One of the most common causes of fluid retention (if not the most common) is low body temperature. Low body temperature is the common denominator between thyroid and fluid retention. Low thyroid function can lead to low temperatures and low temperatures can cause fluid retention or bloating, tight rings, swollen ankles, and puffy face and eyes.
When low temperatures are normalized symptoms of fluid retention often disappear.
Doctors have known for a long time that thyroid and fluid retention can be related. That’s why when patients come in complaining of fluid retention, fatigue, depression, easy weight gain and other complaints, doctors often order thyroid blood tests.
Unfortunately, most doctors don’t know that people can still have reversible low temperatures causing debilitating symptoms even when all their thyroid blood tests come back normal. This condition is known as Wilson’s Temperature Syndrome and was first described in 1990.
Wilson’s Temperature Syndrome tends to come on or worsen after periods of severe social, emotional, or physical stress, such as divorce or childbirth. Typically, patients are going along fine and then they go through some major stress, and are never the same (see some of the possible symptoms in the symptom list to the right).
The fluid retention of Wilson’s Temperature Syndrome can also contribute to headaches, carpal tunnel syndrome, high blood pressure, and other problems.
Some people can improve their temperatures on their own with healthy diet, exercise, stress reduction, and rest. Others may need the special thyroid (T3) treatment linked below. (Training for Physicians HERE)
I have been taking the T3 for Wilson’s Syndrome for about 20 days. My body temperature was between 95.5 and 97 before treatment. Now it is 98.2 – 98.6. I feel 200% better. Fluid retention is almost gone. Before treatment I took 2 different blood pressure medications and a fluid pill and my blood pressure always ran 150/90 – 165/110. Now it runs between 114/76 – 135/89. I have also stopped taking one of the medications and cut the diuretic in half. I have doctored for my blood pressure for several years (10) with several doctors including a cardiologist. None of these “medical professionals” helped me. I was so glad when I found the Wilson’s site on the Internet.
The metabolism can slow down during stress as a coping mechanism and it is supposed to return to normal but sometimes it doesn’t. It’s not known for sure how low temperatures cause fluid retention. However, it is known that almost all the processes in the human body are catalyzed by enzymes and that when temperatures drop so can enzyme function. It may be that when the temperatures drop the muscle cells in the walls of the blood vessels relax, making the blood vessels more leaky, contributing to fluid retention. When temperatures are corrected, improved vascular muscle tone might account for the correction of the fluid retention.
Looking at people with Wilson’s Temperature Syndrome is a little like looking at people through a camera that is out of focus because their features do not look as crisp or as well-defined because of the bloating. Remarkably, normalizing their temperatures can be like focusing the camera, bringing their features back into crisp focus (when they lose the fluid retention).
The body temperature is probably the most important reading doctors rarely check!
And since many doctors don’t know about Wilson’s Temperature Syndrome, people often have to be proactive about informing them.
Practitioners are often quite responsive to learning more about Wilson’s Temperature Syndrome. In fact, most of the practitioners that are treating it heard about it from their patients.
I am a massage therapist who specializes in lymphatic drainage. I first heard about your treatment from a new patient who suffers from “idiopatic primary lymphedema” (unexplained fluid retention) but has had a diagnosis of Wilson’s Thyroid Syndrome. She asked me if I knew about it, I said no. She promptly planted your books on my desk and “Well you are going to learn.” After studying your website and about half way through your book, I am starting to believe that most of the idiopathic edemas that I see are really myxedemas associated with your syndrome. It is interesting to note that she is mid way through her 1st cycle of t3, her temps have hit normal twice today and the edema has reduced by roughly 1/2. I have seen this type of result with other thyroid problems. So I am convinced I am on to something here.
Wilson’s Temperature Syndrome is not the only possible cause of fluid retention, but it’s a very common and very important cause to consider. There are at least two temperature abnormalities that can lead to fluid retention. One is low temperatures and the other is unsteady temperatures. That is significant because the T3 therapy discussed above can often normalize a person’s temperature, however, it can sometimes make the temperature unsteady during treatment. In other words, sometimes patients’ fluid retention doesn’t improve very much until the treatment is over. During treatment patients can see their temperatures increasing, and usually their fluid retention improves, but sometimes it doesn’t improve until they’re off treatment.
Some people are able to get their temperatures up with the prescription T3 medicine protocol (WT3 protocol). You can check our list to see if there is a doctor near you. Or you can use the information on this website (such as our free eBook and free eManual and Guide and CD) to work with your own doctor.
If you have fluid retention, headaches, bloating, carpal tunnel syndrome, or joint and muscle aches you owe it to yourself to start checking your body temperatures by clicking here: How to measure body temperatures. You can track your temperatures on our free temperature log which you can print.
You can also use the tabs at the top of this page to learn more.
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I have suffered with cold several years. The lowest my body temperature was 91.7, but not unusual to be 94 or 95. I take hot baths to get warm. I have several thermometers. I have hair loss and really dry skin. My blood tests say I am fine. Three different doctors tell me I am fine. I have fatigue, water retention, hard time maintaining my weight I am 143 lbs and 5ft 1in. I eat carefully but nothing comes off. I sit under a hot blanket when not busy in house. Also am finding strength in my hands is all but gone. I am a country girl, worked hard all my life and I hate being wimpy. I am 74, but so not ready to be put on the shelf. We adopted a little girl now 9, three years ago and I take care of a disabled lady in my home, but they are a joy to my husband and I..
Can you help me?
Sally Sue McPherson
Normalizing a low body temperature can be very helpful for a lot of people, for sure. I recommend you check our list of practitioners to see if there’s one near you.
how much fluid weight is it possible to carry?
Depending on the size of the person and the condition, I’m sure it could be over 100 pounds.
I was diagnosed with under active thyroid 7 years aga but despite taking kevothyroxine am gaining weight approximately 5 stone despite careful dieting,
I am very puffy and full of water retention which is not only unsightly but very uncomfortable,
With the slightest exertion I perspire profusely mostly the head and face.
My hands and feet are abnormally cold
I have tried coming off kevothyroxine and feel better in keys elf but continue to struggle.
Could you suggest an alternative as this is affecting all asprcts and quality of life.
Sometimes levothyroxine (T4) doesn’t normalize the body temperature, and therefore doesn’t correct the symptoms of low thyroid function. In order to normalize the body temperature some patients need to take T3 instead of T4. T4 can actually suppress the enzyme that converts T4 to the active thyroid hormone T3. Getting rid of the T4 can sometimes help turn the thyroid system around. It’s like rebooting the thyroid system.
I literally have the same situation as Jane, except I have been taking natural dessicated thyroid treatment. My understanding is that this has t3 and t4. I’ve been on it for the past 4 years, but theres been minimal improvement. Does that mean that if it was this syndrome, the t3 in my medication would have taken care of it?
No, not necessarily. To have an adequate body temperature (metabolism) a person needs sufficient T3 stimulation of the cells. Normally, about 80% of T3 comes from the body converting the raw material, T4, into T3. That’s done by an enzyme called deiodinase. If the body doesn’t convert T4 into T3 very well then the T4 is converted instead into RT3. Turns out that T4 and RT3 can both decrease deiodinase. So you see, getting a little T3 with your T4 in your thyroid medicine does not guarantee that you will be getting adequate T3 stimulation.
I just went to my doctor complaining of fluid retention. She said it was because of my thyroid.i feel so bloated and have gained a lot of weight. I am also going through a family crisis that has been going on for months and I am depressed. I am on 200 ms of synthroid
I’m sorry to hear of your difficulties. It’s true that low body temperatures can cause fluid retention and weight gain and depression. Sometimes the T4 in Synthroid can suppress the 5′ deiodinase enzyme that’s supposed to convert T4 to T3. If you’re not converting the T4 very well, the T4 can also compete with the T3 you are making causing you to have low temps. You may need T3 therapy. If your doctor calls 800 420 5801 I’d be glad to discuss your case for free.
First I wanted to say THANK YOU for taking the time to write each of us back! I work at Shands Ped’s department and understand how our busy our faculty are.
With that being said I am PRAYING you can help direct me- I have never had any thyroid problems. One day I was fine everything was normal then after a very long day of shopping I noticed my feet were a little swollen. Well Dr. It hasn’t stopped. That was about 6 weeks ago. My feet get so swollen I don’t have ONE pair of shoes that fit. My temperature is normal. It always run between 98.1-99.1. I typically feel warm most of the time. I am more fatigued than normal. I’ve gained about 15lbs in the last 6 weeks and keep going up. All water. My primary is a dingbat and I don’t trust he will know where to send me. I do not need referrals with my insurance I just need to know what specialist to go to. I’m starting to get nervous about this. Despite the pain of the swelling the veracious veins that I now have from this… It just looks horrible! Please, any advice is more knowledge than what I currently have. Thanks Dr. Wilson!
Hi Jordan :)
Probably, an internist or cardiologist would be a good place to start. As you probably know, swollen ankles could be a sign that your heart is not keeping up with the demands upon it. The doctor can also look for other causes of fluid retention such as hormones, kidney or liver disease. There is a chance that the thermometer you’re using is not accurate. You may want to check it with one or two other thermometers.
Also- I should note the med’s I’m on. Depakote (once daily), Humira (one shot every other week), and Klonopin (as needed)
I have very similar symptoms of water retention, in fact so bad at times, that my face looks like a cushion. No doctor around here knows what to do for me and are now implying that all my symptoms are in my head, yet tell me that all I need to do is lose weight. I feel like screaming at each of them. I know about my weight, in fact, I have never had a weight problem until the last 2 years. I haven’t felt well in 2.5 years and continue to gain weight despite dieting and exercise. I have low body temperature even when I’m feeling over heated and sweating, although I often get red when I’m hot, but rarely sweat. I live in Vero, Florida are there any doctors here that will address my problems? My blood work came back normal except for low testosterone and progesterone. Thanks
You can check for doctors near you here: http://www.wilsonssyndrome.com/patients/medical-providers/
You can also call medaus.com and ask them if they know someone.
I am writing about my 80 year old aunt. She has had swelling – edema issues for the last 2 1/2 months and we cannot get it under control. First they said to reduce salt intake, then they said reduce fluid intake and to lie down, then they changed to Lasix to Aldactone and it helped for about a week. She was released from the hospital even though the swelling was returning and again it is out of control. The edema is on her legs and arms and also weeping. All blood test and scans normal except for albumin level (2.1) – low protein. We have increased and monitored her diet and we have come to another dead end. Still swelling – lies down and fluid receeds, up for about 1 hour – sitting and the fluid returns. She has been weighing 89 lbs and five days ago she was 98 lbs. Only medications she is taking are Aldactone, Vit. D3 5000iu, Centrum Silver Multivitatim and eye drops for glaucoma. She is not diabetic.any suggestions be appreciated. Desperate in Corpus Christi, TX — Linda
Low body temperature can contribute to fluid retention.
Dr. Wilson, I have just about every symptom of low body temperature that you list, with 97.6 avg temp, falling hair, cold all of the time, chronic fatigue, muscle and joint pain/fibromyalgia, swollen legs and ankles, and burning tissue, difficulty falling asleep, etc. EXCEPT I do not have a problem with undue weight gain.
Does not having a problem with weight gain rule out low body temperature?
All these symptoms began with lyme disease almost 15 years ago, at which time my Dr diagnosed poor conversion of T4 to T3 and prescribed Armour. After a short course that apparently had an adverse reaction, he prescribed Standard Process, Thytrophin for a period of time. I have been on 15 mg of Armour daily without any symptom relief. I have not been able to find a doctor here in SW Florida that follows your protocol. I am considering stopping the Armour. Any suggestions?
People can have low body temperatures even though they are not overweight. In fact, some people with low temps are underweight. Colin Chan, MD is in St. Petersburg. I can’t give you any medical advice over the internet about how to manage your medicines.
In 2008 I had my thyroid removed due to Hashimotos and an under active thyroid. Turned out I had cancer. Had radiation – drank it. So my surgeon wants to keep my TSH at 1.0 or less. I had Bariatric Surgery in 2010, lost 140 pounds and doing well. Then my TSH level has started to go up due to the way I absorb. My level went up to 2.3 for TSH. Changed my medicine and the way I take it, now don’t take it with any other medicine. My level went to .8. six weeks later tested again and it went to .3. My primary care, thinks it is to low, surgeon thinks it is ok. Last two weeks I have started gaining weight and now last two days water retention is horrible, Both ankles swollen. 10 pounds of water weight right now in last couple of days. Any recommendations. Desperate in Indianapolis
Low body temperatures can explain fluid retention.
My temperature is consistently higher, around 98.8-99.0, yet I still experience hypo symptoms and my lab tests show low levels of t4 and t3; I have tried t3 only (but not sustained release) and desiccated thyroid with no relief. I am also treating low iron. I am very confused on why I have such extreme fluid retention/puffiness. Any thoughts?
You may want to check your temperature with another thermometer. It may be that the one you’re using is not accurate.
I had low t3 syndrome for 3 yrs and was never treated…finally was treated with armour then synthetic back and forth…synthetic made me sick…i have mctd and fibromyalgia and sjogrens…i had to have my thyroid out this feb. i can’t lose weight and my t3 is still low on armour..my temperature is anywhere from 95` to 97 how do you treat without a thyroid….?
It’s easy to treat people without a thyroid gland since the doctor has complete control of the thyroid hormones in the body. It’s a matter of clearing the T4 and RT3 from the body. http://www.wilsonssyndrome.com/emanual/chapters/t3-therapy-in-hypothyroid-patients-euthyroid-patients-presenting-on-t4-containing-medicine/
Your doctor can call 800 420 5801 and I can discuss your case with him/her.
DO YOU HAVE A PRODUCT TO GET RID OF THE EXCESS FLUID? I’M HYPOTHYROID & ON 88 MCG OF SYNTHROID. IT DOESN’T ADDRESS ALL THE WEIGHT I’VE GAINED SINCE I WAS DIAGNOSED AS HYPOTHYROID. THOUGHT YOU MIGHT COULD HELP ME. ANY INFORMATION WOULD BE VERY MUCH APPRECIATED.
No, I’m afraid we don’t have a diuretic type product. One way to get fluid retention down is to get the body temperature up. Sometimes, T3 can get the temperature up when Synthroid fails.
I had a very overactive thyroid in 1965. I was in my 20’s. I took the radioactive pill recommended by my Dr. and probably because I was young and not informed, I didn’t return to him for about a month. First, with the overactive thyroid I was losing a pound a day and had energy to spare. It was great until my hands started shaking too much and my heart was pounding out of my body. I wasn’t heavy to begin with, but being skinny was someone I had never been. After the pill, I started gaining one pound a day even though I was not eating much and watching my weight just as all my family has done through the centuries. I finally went to my Dr. and got a bawling out for not coming in after the pill. My weight as well as my thyroid has been a yoyo syndrome since then. It is now 2014 and I am 71 and still struggling. My primary care ran the T4, T3 and TSH and said I am fine, but I know I am not fine. She lowered my thyroid to 1.27 from 1.50. I looked up at the Mayo clinic and checked out high and low thyroid symptoms and as I already knew, I have no symptoms of high thyroid, but all the symptoms of low thyroid. Yes, I have been under a lot of stress. In 2003, I had four major emergency surgeries starting with my gall bladder that ruptured and downward from there. These all occured within three weeks. I have lost all memory of anything. Because of the ruptures, including my appendix I got a C- Diff ( spelling may be incorrect) infection. Downhill further. I was later told that I had died during three of the surgeries. I was also told later that my brain had been affected and they think I had a small stroke. All this is news to me. The infectionS ran rampage throughout my body for over a year and all the antibiotics could not stop the infections including a blood infection. Finally, I think it is either dormant or gone, but I don’t think completely. One of the antibiotics ate my red and white blood cells and I was a bubble woman for a while. It also ate my bone marrow. I had had a knee replacement the year before, and after the last surgery I guess the infection went to the most vulnerable place and settled in my knee. I went in for emergency surgery on my knee in September of 2013. It all had to be taken out, scraped, and I don’t know what else and I was put on another very strong antibiotic. I also acquired blood clots and was being treated with coumadin for a year. I still have them, but was taken off the medication. I still go in for blood work periodically and ultrasound periodically.
I am still sick, but not dying, at least I don’t think so. Jump to the now. I am very lethargic, hard to get out of bed, and not energy or caring to even umpack from my move from my other home. Lots of boxes still sitting everywhere. Weight gain, ( sometimes indulge in some sweets), bloating, cold hands and feet, low temperature, hair loss, brain fog, Hair loss in my eyebrows. and all the other symptoms. I have been under loads of stress since in 2001 my husband was diagnosed with Alzheimer’s and I was his sole caregiver. He passed away April 23, 2007 1/2 hour after my birthday. The seven years were unbearable and It changed me as a person.
I don’t know where to go to get my throid straightened out. I tried to get into a Dr. that treats thyroid problems, but I cannot get in until the end of August. That is just too far away. I am looking for another Dr.
I know this is long, and I am sorry, but this is a large problem in my life and I thought it best that I told you all of it instead of bits and pieces.
PS. Because of this and my Primary Care Dr. not listening to me, I no longer have a PC.
I am a 53 year old woman who was diagnosed with a Hashimotos Thyroid problem at the age of 9. I was prescribed Armour Thyroid 180 MG – 240 MG ( 3 – 4 grains) daily for over 40 years. I began experiencing problems associated with low thyroid and tests reflected my T4 & TSH levels were both almost non-existent. I was told that it was probably due to the T3 in the Armour medication and was switched to Synthroid 1.75 which only gave me temporary improvement and then back to low levels. I was then placed on Tyrosint (a time released Synthroid) and seemed to do better for about 15 months. I always have a normal low temperature of between 95 – 97. My feet and hands are always ice cold and even blankets don’t help. I’m normally a very active, hard working person, but lately I’m exhausted and have to push myself to do anything and I need to nap a few times through the day. Should I insist the doctor put me back on the Armour medication since it has the T3?
If you have a normal TSH and low body temperature then you may not be converting T4 to T3 very well. Some T3 may be better than no T3, but all T3 may be better than some. T3-alone therapy can often lower T4 and RT3 levels and upregulate the deiodinase enzyme and normalize body temperatures. In some cases, T4-containing medicine is ineffective in normalizing low body temperatures. You might consider seeing a physician on our list or calling medaus.com to see if they know of a doctor near you.
I have been suffering from Hypothyroid for past 7 Years which resulted in PCOS.The water retention patters has been very strange..one day it feels normal the ther day itself I feel all puffed up.
I do excersize regulalry,eat normally,no sugar,no diary diet.These fluctuations have been hard on mind and not be able live up happily.Not a single day passes by without feeling sorry.
Though I can feel a slow and steady progress for past 4 months. where temperatre fluctuations are minimal..but will I ever be able to get rid of this problem forever?
Some people are able to normalize their temps and remain improved indefinitely, particularly if they are able to reduce the mental, physical, and emotional stress they are under.
Hi I am only 26 faced with fluid and swelling in my thighs and belly. No dr has been able to help me. My body temp ranges between 90 to 94 yet t3 is 10.2 high, t4 is 15.10 and tsh is 0.004 low. Is my non pitting edema related?
Hello Dr. Wilson,
My body temperature was ALWAYS 96.-something. Then I got pregnant, and about week 30, my hands and feet started swelling…and it never went down. (For the record, the last trimester of my pregnancy and the first few months with the baby were /extremely/ stressful.). I’m 7 months pp and I still can’t wear my wedding ring. Around 4 mo pp, I was diagnosed with post partum hypothyroiditis, which looks like it is going to be a permanent hashimoto’s thing. I’ve been taking 100 mcg of synthroid, and my hands and feet are still swollen, I have hot flashes still (but my hormones–estrogen, progesterone etc–are all normal). I believe my doctor thinks my rings don’t fit because I haven’t lost all the baby weight yet, but when I was pregnant, I could wear my rings when I was 25 pounds heavier than I am now. I’m still so exhausted I sometimes worry I will literally drop my child. Not sure what my temps are these days, but I can’t imagine them being low when I feel so hot all the time. Does any of this ring any bells with you or does this just sound like a thyroid that isn’t yet under control, or do you have any thoughts? Thank you so much for any feedback.
Low temps can explain your complaints. I would encourage you to check them because they might be low even though you feel hot all the time. Best :)
I was just wondering if you could tell me if my thyroid could possibly be causing this ! I’m 23 years old, and this year I’ve been experiencing very dry skin, red patches on face, 15 lb weight gain and am always cold. But what really bothers me is that my face had become puffy, not necessarily around my eyes but just my cheeks and jaw line. My TSH for last year was 1.7 and now its 3.9. Is that a normal jump?
Thank you so much for your time!!!
Hi Jen :) Low body temperatures can certainly contribute to dry skin, weight gain, puffiness, and feeling cold. TSH can go up and down. Sometimes it can trend upward when thyroid function begins to struggle. I would recommend you visit one of the doctors listed on our list of treating physicians.
I am suffring from hypothyroidism which 7.5 what should i use asedication for swelling and to control my thyroid
The treatment depends on your situation. I recommend that you consult a physician listed on wilsonssyndrome.com
I am sick and tired of trusting all these different nutrition specialists saying things like to avoid raw cruciferous foods including raw cultured ones such as cabbage, broccoli and cawliflower.
For example, this doctor (Ill avoid using names) suggests to avoid Coconut oil (even though it’s been marketed as the miracle oil for hypothyroism), avoid cultured vegetables and seeds like buckwheat due to their ‘yin’ condition. Apparently, according to Chinese medicine, too many ‘Yin Foods’ are throwing off the body’s balance making it too ‘yin’. This worstens health issues such as Candida and actually making Hypothyroidism worst.
Another well known nutritionist, in her book, (no names here either) is suggesting a diet of fermented vegetables, seeds like buckwheat and coconut oil while this other doctor is advising against all these foods because they’re too ‘yin’ for the body. Both may sound or be logical but which is really right for our low thyroid?? Does anyone really know? Or are we being victims of theoretical experiments??
I must say though, that eating cultured vegetables and coconut oil I lost weight but during that time, I was also living by the beach, so…..
Then we have the Iodine solution. Some say to take Iodoral or eat iodized salt (while it’s stripped most of its minerals and there’s not much iodine in it anyway) and others say to avoid taking Iodoral because it’s a synthetic iodine composition which is also toxic to the liver.
And then it’s salt – due to my weak adrenals I need extra salt. When I consume about 3 teaspoons of unrefined sea salt a day I get bloated! and if I cut down on salt then my low blood pressure worstens! It’s like a cursed double edge sword all the time………..
So is it Iodoral or Kelp? Cultured vegetables or cooked ones only? Coconut Oil or not? Iodized salt or unrefined sea salt?
I am 48, a natural bodybuilder and a mother of two. I think I have had hypothyroidism since my teen years. My weight always fluctuated each time I was exposed to emotional stress. (I have always been a health nut and it’s also what has helped me to get by and deal with all the chronic emotional turmoils in my life).
I understand your frustration. I do think that what might be good for one person might not be so good for another. I’m also convinced that the best measure of the speed of the metabolism is the body temperature. Looking at the body temperature to see how fast your metabolism is going is like looking at the speedometer to see how fast your car is going (instead of the gas gauge). I don’t pretend to know everything, or to have any one-size-fits-all knowledge. However, I do feel that iodine plus selenium plus herbs is better than iodine alone. One way you can see how well dietary changes are affecting your metabolic rate (determined largely by your thyroid system) is by measuring your temperatures. If you feel well on cultured vegetables and coconut oil and your body temperature doesn’t go down, that doesn’t sound very bad to me. If your temperature improves doing those things, that sounds even better.
Thank you for your reply and great advice Dr. Wilson :)
It does sound like a logical one which Ill definitely take into consideration.
Ill start taking my temperature starting tomorrow and see how certain foods affect it. I have been taking Kelp with Selenium including Tyrosine and Beta-Carotene for the last 2 months now and so far I have noticed my sleep has been improved (though my temperature is still around 96) and will continue to do so until I see more improvements.
Gosh, I am starting to believe that our digestion’s function depends more on our soul’s bliss or our soul’s sadness..
My 15 year old daughter and I are both on T3, Cortef and Florinef. My fluid retention and migraines have gone while my daughter continues to have problems with fluid retention. Her migraines are gone as well, but we can’t seem to get rid of the excess fluid while she still has low blood pressure (100/65). We are both on a gluten-free and low-carb, high protein diet. Any thoughts or suggestions would be greatly appreciated.
Hi there :) I’m not sure why you two are taking Florinef, however, one of the side effects of that drug is fluid retention. Perhaps she is taking that for low blood pressure. Though I can’t give medical advice to you over the internet, I’d be happy to speak to your doctor for free about glycerrhizic acid. He/she can call 800 420 5801
Hello, i’m not sure if i’m suffering from this problem, but i’m having major issues with water retention, this water retention is directed around my face, sometimes my features appear chiselled and the next day they appear much more rounded, this is sometimes accompanied with dryness, also the days in which i have more water retention i’m much colder especially around my hands. i’m currently taking iodine supplementation, however, am unsure if taking selenium will benefit my condition or worsen it, currently, taking iodine i have noticed a rise in temperature, could this mean i’m suffering from an iodine defiency or is this just a small fix of a bigger hormonal problem? what else could cause water retention specially directed around the face, this is the only thing that fits?
Yes, low body temperatures can explain fluid retention. Sometimes hypothyroidism can be due to iodine deficiency, at such times, iodine supplementation may correct the hypothyroidism.
I have been taking t3 for 70 days and I feel so much better ! First 30 days on 60mcg and now I have been on 90 mcg for 40 days. I still have fluid retention ! How long will it take to leave my body ? I also notice that my lymph node are swollen from time to time and I don’t know why. I did have my thyroid removed a year ago and I also have graves.
The number one side effect for people taking T3 is fluid retention. This appears to be due to the fact that T3 has a shorter half-life than T4 which makes it more difficult to keep the T3 three levels steady. Taking the T3 in a sustained release format and taking the T3 very much on time seems to help. Of course there our other potential explanations for fluid retention that you can discuss and evaluate for with your physician. I am very glad to hear that you are feeling so much better :)
I have Moyamoya and didn’t think twice about all of my problems. My thyroid levels were low normal but I managed to talk my physician into prescribing Armour 60mg about a year ago. I suffer from horrific complex migraines and take many pain meds along with Botox treatments every 10 weeks.
About three months ago I hit bottom with pain, inability to move easily, significant weight gain… I was on FMLA for two months due to fatigue, lack of sleep (even though I was sleeping more than 12 hours a night). Four weeks ago one of my Dr.s asked me to could my Armour dose to 120mg each morning. Within about four hours I felt like a new person, I even went back to work two weeks ago and have felt great -until a few days ago. I am slowly getting signs of migraine and not sleeping well again. My body tem is again normal, up from 96.6. I would like to know if the T3 protocol might be a better alternative.
It is indeed possible that the T3 protocol might be a better alternative. I wouldn’t expect your migraines and not sleeping well to creep back without your body temperature slipping lower. Best :)
Hi Dr Wilson,
Last year I gained over 15kg (8kg of that was in 8 weeks) – after having my thyroid levels tested my TSH was “normal” and my GP told me to go on a diet – at the time I was running 10km most days and I eat a very balanced diet of around 1500cal/day. After a few more months of maintaining a regular exercise routine and decreasing calories I was a few more kilograms heavier so I went back and had my TSH, T3 and T4 levels checked and my t3 was low and the T4 was borderline. Despite this I was still not I eventually got them to agree to giving me a referral to an endocrinologist who sent me for an MRI which shows a possible pituitary tumor.
So I was started on thyroxine almost 7 weeks ago now, however I am still gaining weight, unlike other’s here I always feel hot (I used to be cold all the time up until the dramatic weight gain), my hair is getting thinner and breaking off, i didn’t have my period for 2 years – up until last month (after commencing the thyroxine so ? it has triggered something). And ? some of the weight is fluid retention.
Anyways, I am at a loss as to what to do next and feeling very frustrated with the process so far – it was a year ago when this all first started.
The symptoms of low thyroid come from low temperature. The purpose of thyroid treatment is to normalize body temperature. Low temps can explain easy weight gain and the other symptoms you have. I wouldn’t expect the symptoms to improve until your temperature improves. Best :)
I have been suffering from fluid retention for several years now, mostly in my ankles and lower legs, more on the left leg. I was told it was because I am heavy and it is a drainage issue. I asked this of more than one doctor, one being a vascular surgeon and this is what I was told. Now, I found out that I have a low thyroid and a doctor is telling me that this could contribute to it. The fluid retention, swelling of the legs and ankles used to occur mostly in the heat of the summer and would disappear for long periods of time. Now it is happening all year round. Today I am particularly swollen. The Rheumatoid specialist I just seen is going to prescribe a low dose medicine for my thyroid issue and wants to start me on it asap, after I take some blood tests. She said it should make me feel better. I was also getting symptoms of irregular heartbeat and have had very heavy periods on and off since 2008 culminating in a D & C in late 2011. So far I have been basically okay with that. At this point I am most alarmed about the fluid retention.
Yes, low temperatures due to thyroid issues can cause fluid retention. Sometimes T4-containing medicine doesn’t get the temperature up. I recommend for you to see if the medicine improves your temperature. If it doesn’t improve your temp then it might not help your swelling. T3 can often get the temp up if T4 can’t, but T3 tends to be unsteady and the number one side effect of unsteady T3 levels in fluid retention. So it can be tricky to fix but there is definitely hope.
I have been on a very low dose of meds for the low thyroid for about three weeks. So far the fluid is not decreasing. It’s the same. I have not taken my temperature. I will mention this to my doctor at the end of April but the leg, and ankle swelling is my most bothersome symptom.
Surely, I would only expect thyroid medicine to help symptoms by using it in such a way as to normalize the body temperature.
I had thyroid cancer and had my complete thyroid removed. I take sythroid but my weight has not come down. also I have sudden symptoms of carpal tunnel n swollen hands n feet.
Should I talk to my doctor about Wilson syndrome?
Absolutely. You can take your temperatures and then talk to your doctor.
Hi, at christmas my husband had a tumur removed from his piturity gland. Since surgery, he really feels the cold, he wears 3 pairs of thermal socks, hot waterbottles and electric blanket and his feet are still freezing cold, and they are swollen with water retention. His knees are very painful and swollen. Also since surgery his hands and arms are very painful, hands are swollen and he cant even remove a top off a bottle. His endocrine consutant says all routine tests after the op are ‘normal’ and just shrug his shoulders when we mention that my husband is this unwell, he just stays in bef he has not been able to work for 4 months, some insight from you would be greatly appreciated.
Hi Wendy! If he has low temperatures then I’d recommend that he look into having his temp raised to normal with treatment. Could make a big difference. Might solve the whole thing.
This is such an eye opener. I have battled with my Thyroid since college (98) and it got worse with both of my pregnancies. I have been eating clean no sugar or processed carbs, I just eat lean protein. I drink a ton of water like 80-100 ounces a day. I also cross-fit 3 days a week. Yet no matter how much I feel like I am in shape I do not feel a visible loss. UGH SO FRUSTRATED>
Yes, low temps can definitely contribute to weight issues.
I was diagnosed as hypothyroid in 2010. I was on Levo for the first 2 years and then switched to Synthroid. After I switched I noticed a significant difference. However, I gave birth to my son in September and have since been feeling worse. I am currently on 175 mcg and am 7 months post and experiences swollen hands. I do not even know where to begin with speaking to my doctor but I am thinking I should start monitoring my body temperature. Which was of taking my temperature would be the most accurate?
Here you go: http://www.wilsonssyndrome.com/identify/how-are-body-temperatures-measured/
I have been on a very low dose of levothryroxine for a little over a month. I thought the foot, ankle and leg swelling was going away. I was free of swelling after about three weeks, for about a week and then it came back with a vengance. I am also experiencing flare ups of rashes on my lower legs. I did have swelling before going on the drug and also noticed a light rash but everything seems to be getting worse. Not sure if I should stop the drug or not at this point. I am not seeing the doctor until the end of April.
I am 70. I was diagnosed with low thyroid in my early 50’s. My dose of thyroid (or its generic) has increased over the years. It is now 125. For the past 4 years I have felt such lethargy that some days I cannot even function. I have told my internist for several years. He suggested a sleep study. He is no help. I went to my cardiologist the other day and she ordered a free T3 and free T4 besides a TSH. I had never had the first two tests before. My TSH is 5.39. I think the T3 and T4 were almost normal. I know a few years ago, while I was already suffering severe fatigue, my TSH was much lower and my internist told me to skip a pill a week. My cardiologist has sent me to a endocrinologist. My appt. is in TWO weeks. I cannot wait. I cannot live like this. Do you think he will do tests my internist never checked. I don’t even know if it is Hashimoto’s (would that matter). Thank you so much for any encouragement you can give me. P.S. My body temperature has been running 97.6 for the past month. I have cold feet and sometimes hands. I get severe headaches that last 3 weeks and then go away for 2 or 3 months. PPS The first dr. who diagnosed my low thyroid was my then internist, who was also an endocrinologist. I asked him if I had Hasimotos and he said, “what does it matter.!”
The purpose of the thyroid system is to maintain a normal temperature.
The purpose of thyroid treatment is to normalize body temperature.
Blood tests can’t accurately measure your metabolism because they don’t measure body temperature.
I would expect your thyroid symptoms to resolve until your body temperature is normal.
Body temperatures can often be normalized with proper treatment.
Hashimoto’s can sometimes be stopped, which is good because that can save the thyroid gland.
There is a list of treating physicians on our website: http://wilsonssyndrome.com
I could just cry right now. I’ve been dealing with fluid retension and swelling in my face, legs and more importantly under my arm pits. The doctors keep telling me that the under arm swelling is just excess breast tissue. I finally took a couple of pictures of what I look like in the morning when I wake up. Everyone that has seen says the samething, oh My God that’s not normal. The last doctor has me taking 2 water pills but that’s not helping. I has hoshi’s and am now on Armour thyroid. I not really over weight, 148 pounds. I wake up at 5:00 and weigh myself, take my Armour and then go to the bathroom. When I get up an hour later I go to the bathroom again and re weigh myself and I will be 3 pounds lighter. The fluid builds up while I’m sleeping. I will start taking my temp each day and see if that is anissue. I’m SO THANKFUL. for this post. I will show my surgeon next week when I see him. Thanks
If blood tests are normal what causes of low temperature?
Blood tests can’t measure how your metabolism is doing because blood tests can’t measure body temperature. Blood tests only measure thyroid hormone supply, not thyroid hormone utilization. Suleliman, it’s a little like someone looking in your refrigerator to try to figure out whether you’re hungry or not. If I wanted to know if you were hungry, I’d ask you. You could have a full refrigerator and may not have eaten for 24 hours. T4 must be converted to T3 in order to be activated.
Over the last 5 years my hypothyroidism has gotten worse and the more medication (armour) the worse I get. They even took me off t3 at one point and put me on straight t4 and my body ballooned from water and my ski was flushed. Recently my dr upped my armour a whole grain even though all my levels are extremely low indicating hyperthyroid I feel like crap and I keep gaining weight. The past 2 weeks have been a nightmare and I’m holding so much water it Is painful. I stopped taking my armour last night and ive only been taking my t3 (37.5mcg) is this an odd occurrence? Will this water that is in my legs and arms go away by stoping the armour. Beginning to wonder if t3 only will be the right answer for me.
What you describe is classic. Please see this link: http://www.wilsonssyndrome.com/emanual/chapters/if-considering-therapeutic-trial-of-thyroid-why-not-use-t4/
Dear Denise Brandt: With all due respect to what the doctor says — I’ve had both hypothyroidism and lymphedema for 54 years. Lymphedema often follows hypothyroidism – no one knows why, but a doctor in the U.S. has taken notice and is researching why lymphedema very, very often follows hypothyroidism. The lymphedema brings on edema far greater than the swelling that comes with hypothyroidism and its cool temeratures. The swelling of lymphedema is worse in warm temperatures in which your body gets very warm. Lymphedema can be part of any area of the body but it especially shows in the lower parts. Yes, you can have lymphedema swellling in your face, and whereever. An ENT specialist told me I have it in my throat and in my ears! I have some difficulty with blocked lymph nodes in the crook of the elbow which keeps the arms and yes maybe the armpits swelled. With lymphedema, you should NEVER take diuretics as it makes the condition worse. If I had space I could explain what the doctor told me why diuretics make the condition worse. If you could find a message therapist who practices Manual Lymph Drainage, it would help you. However, it is not cheap. Where I am it costs $120/hr treatment but it will give you relief for a few days.
I have a ridiculous amount of issues. I have problems using the bathroom, fluid retention, at times I freeze to death and take forever to get warm. I struggle with my weight and constantly hurt all over. I have headaches regularly and sinus type issues. I have went to the doctor and they did blood work and my crp was 25.5. The inflammation levels scares me. I am just miserable and need help. I have a history of heart disease, kidney disease and cancer in my family. Sometimes I have such problems with my hip that I can’t lift my leg in and out of the car or even left my leg to put on clothes without assistance. I am only 36 and I am really worried that I won’t be around to raise my children. Please help… also I was wanting to know how much of my weight could be from fluid retention.
Yes, certainly fluid retention could contribute to your weight though it would be hard to say how much. Under the Patient menu on wilsonssyndrome.com you can find a link to a list of medical practitioners that can help you. Best wishes.
I have had hypothyroid for years. Most doctors I had only put me on very low doses of medication, because they were only treating lab tests. I now have a great doctor who did some further digging and found nodules on my thyroid that were big enough to need biopsied. After that, I had to have my thyroid completely removed, and was diagnosed as Hashimoto’s. Having said all this, I have had MAJOR swelling/fluid retention for years in my feet and ankles and occasionally my face. it is ALWAYS worse when it is warm out. I’m only 31, but I have been miserable for years. I’m confused about the whole body temperature thing. I have never had issues with my temperature being low. I seem to always be hot….non stop to a point that it’s annoying. I now lately have had swelling and fluid retention not only in my lower extremities, but also my abdomen, face and fingers. I am miserable. Where do I go from here?
Hi Leslie :)
People can have low temperatures even though they feel hot all the time. I recommend you check your oral body temperature with a glass thermometer: http://www.wilsonssyndrome.com/identify/how-are-body-temperatures-measured/
Hi Dr Wilson
What a interesting site and thank you Dr Wilson, in taking the time in answering everyones question. I have a few medical issues that my Dr doesn’t have an answer for.
Bit of my history.
June 2012 – My Dr put me on Evorel seqi patches (HRT) as my hormone reading was 29. (Age 37). Still having normal and regular cycles.
June 2013 – I can off the HRT patches as I was gaining a lot of weight. 3 stone. Didn’t use any other medicine,
Feb 2014 – I started to develop alopecia areata which spread to about 30%. This year 2015 it has started to regrow from private treatment.
Jan 2015 – My body, especially my face is continually swollen. Have gone up a shoe size. And my stomach looks like I’m 9mths pregnant. Tried antihistamines, fluid retention tablets. Nothing worked.
March 2015 – Had a MOT done on my bloods and they came back fine.
June 2015 – Had a CT scan to check if there was any obstruction or blockages. Came back clear.
I eat extremely healthy, no processed food in the cupboards, fridge or freezer. Drink about 3 litres of water per day. Do alot of walking but don’t go to the gym due to my size.
Dr said that there is nothing they can do. I feel extremely dis heartened by this, as not only I have gained 4 stone in weight, which will not move, was almost bold.
Could you please recommend so advice so I can present it to her.
Thank you for taking the time in reading my email. My temperature is 36.6 C.
Hi Michelle! It sounds like you’re in the UK. Yes, stress can cause low temperatures and low temperatures can contribute to weight gain. It seems that you should talk to your doctor about wilsonssyndrome.com and getting your temperature up to 37 C. Here is an article you can refer your doctor to: http://www.sciencedaily.com/releases/2015/03/150318144843.htm
I came across your thread while looking up some symptoms. I’ve gained ten pounds in the last couple weeks despite more exercise than usual, I have been extremely tired and having troubles falling asleep at work, and now have really swollen ankles. My hands and feet are always cold, and I have carpal tunnel issues which have gotten much worse in the last few weeks as well. I have also been under an insane amount of stress and have been depressed more than usual lately. I can’t afford a doctor visit at the moment but am starting to get a little worried and its starting to sound much like a thyroid problem with what I have read here. My temp reads 98 on the dot though, not particularly low. Can you give me any input of advice? Is there anything I can do to reduce the water retention and swelling? Any rough idea what thyroid tests will cost? Thanks.
Hi there :), Thyroid tests will hopefully cost under $100. A temperature of 98 is not particularly low but it is low enough to possibly explain such symptoms. Plus, your temperature might be lower, if your thermometer is not accurate. Getting your temperature up may reduce your fluid retention. You can try reducing your stress or perhaps changing your perspective, and getting more exercise. http://www.wilsonssyndrome.com/restore/restoring-metabolism-without-a-prescription/ Best wishes to you.
Hi Dr. Wilson,
You’ve probably heard this thousands of times but so many of the symptoms listed are so familiar and have been for many years. I’m in Southern Ireland, do you have any registered physicians here? How would my doctor go about sourcing T3 for treatment?
Best regards and thanks,
Hi Mary :) No, unfortunately we do not have any registered physicians in Ireland. However, Here is a page that will give you some ideas on how to talk to a doctor near you: http://www.wilsonssyndrome.com/patients/recruiting-a-doctor/
Then, this doctor would need to work with a pharmacist in your area that can provide the T3. Best wishes!
I have hypothyroidism since 1998. I’ve been pretty much fine until I turned 40. Now I’m 45 and even when my doctor keeps telling me everything is fine I can tell something is off. I know for fact my body temperature it’s been low my entire life I'[ve been always around 36.5 Cº or 37º. I’ve been struggling with water retention for the past 2 years. This is my concern and I know this might sound weird but for 3 to 4 month period my body seems to accumulate the weight I gain on every period. Let me explain it better, If I gain 3-4 Lb when on my period the water and the bloating stays with me until the next period and then a will pile another extra pounds. Crazyyyy! Right? I’ve been struggling with this sort of “body behavior” for the past 2 years fluctuating like crazy and my general doctor, gynecologist and endocrinologist all together blame my age. If I put myself on very strict diet I can control the symptoms but sometimes I can keep up with it and everything goes back to the fluctuation weight loop. I’m on L-thyroxine 112 mcg 1 pill a day and Liothyronine 5mcg twice a day. If you have any suggestions on how to fix this I will really appreciate it. Thank you!
Hi Fabiana! Yes, I can believe what you’re saying. You can go to wilsonssyndrome.com to get more information and here: http://www.wilsonssyndrome.com/patients/medical-providers/ to find a doctor that can try to help you sort through your problems. Good luck :)
I’ve had hypothyroidism since childhood. I am currently on both Armour thyroid and Cytomel. My symptoms are minimal, but still annoying. From time to time (like now) I experience swelling of my ankles. It’s especially warm here, but it happens at other times also without explanation. Also every morning I wake with my face puffy. Am I not taking enough meds? My experience is that if I take much more medication, I’ll experience heart palpitations, so I’m confused as to what the cause of all this is.
I do suggest that you consider visiting a doctor listed here to help you sort through your issues:
Off and on for a few years I’ve had pins and needles in my hands and feet, also facial swelling (never noticeable). On June 16th, I noticed a weird feeling in my ankle. We had been eating out a lot because of a big move. I checked my calf and it had pitted edema. I started eating healthier but the swelling never went away and has gotten worse. My calves, ankles, stomach, arms, and face have edema. I have pins and needles in my hands and feet at night. I went to the dr because I have never had a problem with swelling even during periods. My body temp at the dr was 97, my bp was 155/95 (had it rechecked before I left it was 110/85). Dr put me on 12.5mg hydrochlorothiazide. It helped my swelling the first day, but the second not so much. I have been on a very low sodium diet since Friday. Could this be hypothyroidism? Dr thinks so. I think it’s cardiac because of a lot of heart related problems in my family but I am not a dr. Any advice? Is there a vitamin that would help the thyroid if that is the problem?
Low body temperatures can certainly contribute to fluid retention. Congestive heart failure can also. It does make sense for you to get evaluated for heart disease.
Sir, i am writing about my mother.She was diagnosed with thyroid about 15 years ago.But still her thyroid is not under control.She is taking thyroid sodium tablets 125 mcg.She has been suffering from fluid retention.She has edema in her legs and face.The doctor asked her for kidney test which is normal.She is so depressed now.Please help…
I’m sorry to hear about the difficulty your mother is facing. She is lucky to have such a loving and concerned son. Wilsonssyndrome.com has a lot of information for patients and doctors that explain why some people on thyroid sodium tablets can have normal blood tests and still have low body temperatures and troublesome symptoms. There is even a doctor’s manual there that explains how to fix the problem. I can also discuss it with her physician for free.
Hi Dr. Wilson,
I have been diagnosed with hypothyroidism. My doctor thinks I may possibly have euthyroid sick syndrome, but he has been flabbergasted by my body’s lack of response to the thyroid medication. He knows for sure that I have Reynaud’s.
Neither the armour thyroid medication nor the compounded thyroid medication that I was prescribed have helped. I have actually gained weight, and I believe that at least 70 lbs of the weight are due to edema. I even took over the counter iodine drops for a couple of weeks, but they did not help. I stopped adding table salt to my food. I have reduced my caloric intake, and I am at the highest weight that I have ever been. I am almost at my wit’s end. I have tried eating foods such as garlic and celery that promote the release of fluid, and I elevate my legs at night (and sometimes throughout the day). My doctor even prescribed Lasik for me, but it didn’t help much either. At the most, I will lose 7 or 8 lbs in a couple of days from the leg elevation and from eating natural diuretics, but the weight comes back as soon as I eat. Also, if I sit up the edema runs straight to my feet.
In addition to seeing my doctor, I have also been reading up on different possible scenarios, e.g. adrenal fatigue. I have also come across info on estrogen dominance. I am wondering if I have some combination of both estrogen dominance and hypothyroidism. I attended your webinar earlier this week, and I took notes. I am trying to see what my next steps should be, and I had a few questions for you:
1. In the webinar you mentioned liver support as one of the methods to improve the conversion of T4 to T3. What products, vitamins, foods, etc. support the liver?
2. I have seen the blog where you recommend avoiding gluten, but do you recommend a specific diet (for example, Paleo, Mediterranean, etc.) to help heal the thyroid?
3. Can body temperature be fixed without taking thyroid medication? If so, how?
4. Are there natural ways to rid the body of the negative effects of estrogen dominance?
5. In the webinar you mentioned cycling on and off the medication. If for some reason my doctor was not familiar with Wilson’s temperature syndrome and I wanted to try your thyrocare myself, how would I as a patient know when to cycle off the medication and when to cycle back on? Would I cycle off and on based on the way I feel physically (if so, what physical changes should I look for), or would I cycle on and off based on a set schedule (if so, what would that schedule be)?
6. I love broccoli, but I have read that it can actually be harmful to my thyroid health. Is this true for those with hyperthyroidism only, or is this also true for those with hypothyroidism?
Thank you in advance,
Hi :) Tumeric is an herb used in India to tone the liver, Milk Thistle also used to support liver. Antioxidants are helpful to decrease the load on the liver, and to help the liver clear toxins that can adversely affect the thyroid gland. It’s true that some T4 to T3 conversion happens in the liver, though I mainly wanted to emphasize the importance of detoxing the body of toxins.
Yes, both those diets would be fine. Mainly it’s good to stay away from wheat and minimize refined carbohydrates and sweets.
You can find out more about recovery without a prescription here: http://www.wilsonssyndrome.com/restore/restoring-metabolism-without-a-prescription/
4. Good diet and detoxification would be good places to start (as above)
5. The concept of cycling pertains to T3, which is a prescription medicine.
6. I don’t believe a small amount of brocolli now and then will be a problem. You could probably eat up to 1/2 cup every day or every other day without too much trouble.
Hello Dr. Wilson,
My wife is suffering from edema for the last 2 yrs mainly on her foot and ankles. Sometimes this fluid retention disappear. But for the last one month its becoming worse. We visited several doctors and they did blood work. All the times all the blood reports were fine. Her TSH is normally between 3.5 to 4.0 IU/ml. Also as a life partner i always feel her Cold Blooded. Is this fluid retention related to thyroid problems?
Low body temperatures can contribute to fluid retention, for sure.
Hi Dr. Wilson,
I have been hypothyroid for 9 years, been on levothyroxine and cytomel and never had any issues. In June, I had all 7 of my mercury fillings removed. Since then, my TSH has increased while all my other thyroid numbers have decreased (free T3, T4, reverse, etc). I am also getting brain fog every time I take my thyroid meds. I am gaining weight, even though I am eating the same foods. I also eat steamed broccoli, brussel sprouts and cooked rutabaga every day (great vegetable sources) My body temp is usually around 98.3 in the am, and lower throughout the day. I am chelating the mercury out (levels are high), but am wondering if your protocol might help clear my thyroid receptor sites as well, so I can get my thyroid back to normal ??
For sure, diet, exercise and T3 therapy are excellent options for clearing thyroid pathways and normalizing body temperatures in patients with low body temperature.
I happened to stumble upon this site looking up about lymphedema. I’m scheduled to go a lymphedema clinic next Thursday. I’m 41 and had a hysterectomy at 27. I’ve had some major medical problems including hx of renal failure (resolved), blood clots, mild htn, asthma and Lupus to name a few. I have always been very thin until I had a hysterectomy. I finally had got my weight off until this past year. My temp avg is about 96. When it gets lower, I develope chills and sweating and feel awful! When I run “fever” even at 99, I feel like death. I have chronic fatigue and 3+ pitting edema in my legs and ankles. I swell everywhere though. I have been on 40mg of Lasix since I was 25. But the past few months, even 80mg doesn’t touch the fluid. I do have a goiter and several nodules on my thyroid but my function test are “normal”. This past yr I’ve gained about 30lbs, at 5’2″ that is huge. My belly is very distended and hurts for clothes to touch it. Do you think all of these things could be due to my temperature? I know I’m a very complicated case. With all of my health issues my temp has never been addressed, except 1 time. I was told that it was because I was so sick with an infection and sometimes people have a low temp instead of high. I’ve tried to tell them, it’s chronic. Is this a known medical condition or do you need to see a special dr? Thank you so very much!
Hi Rachel! Having a low temperature can easily cause a lot of health problems. It is a big deal to have a temperature that averages 96. Essentially, doctors should not give you any diagnoses until your temperature is normal. Your low temperature proves that your metabolic rate is not adequate. Your slow metabolism affects virtually every bodily function. You may have a way to go to recover good health, but it seems to me that normalizing your low temperature should be one of the first steps.
i have PCOS since 9 years. 3 years back i acquired hypothyroidism. since then i am just increasing weight inspite of taking high doses of thyroxine(175mcg currently). nothing has helped to reduce my weight ( and increasing day by day). other than that i am also taking metformins. anti TPO is 7600.i also have water retention in my ankles, fatigueness, joint and muscle pain and depression.
Hi Yukti, If your body temperature is not normal, then your thyroid medicine is not adjusted correctly. I recommend that you visit a doctor that can normalize your body temperature and hopefully bring down your TPO antibodies. I can speak with your doctor for free or you can try visiting a doctor from our list of treating physicians at wilsonssyndrome.com
May of 2014 I noticed my legs where getting bigger and I had these red dots all over. I was told it was petechiae, my kegs we’re swelling so much it was causing my blood vessels to burst. From there it has been a down hill slope of Dr after Dr and test after test with nothing being the answer. I am tired all the time, although I was diagnosed with mono in Feb 2015 so that was brushed aside. I do get headaches a lot, but that is some tgat is gentic I’ve had those since I was 10. My toes and hand are often cold as am I when everyone else is not. I get a tingling numb feeling in my arms sometimes. I am finding it hard to lose weight no matter what I do. I’m not really gaining a lot just can’t seem to get it off. When my legs become really swollen they are so tender and achey. My knees and shins will often cause me pain. I’m tired of feeling like this and having my legs swollen with no answers. Do you think t3 treatment would helpful me? Or am I just a lost cause.
Hi Nicole, I definitely would not say you’re a lost cause. I believe there is always an answer and the only way to lose in life is to give up. Normalizing low body temperatures can often improve fluid retention. Toxins in the body can contribute to thyroid and weight problems so you might consider looking into some sort of detoxification program.
I have edema all over my body. I have been to every kind doctor. Cardiologist Endocrinologist Internal medicine. They keep telling me its because of my weight but I received my bloodwork and it showed fluid through my entire body. I get chest palpations have become pre diabetic 6.1 AIC I have dropped that from 6.4.Reading this article all the symptoms you mentioned I have yet no doctor will treat me for my thyroid. My temperature tonight is 97.5 and its always low. Can you please help I cant last much longer like this. This fluid is going to cause a major cardiac event I can feel it in my soul. Thank you
Absolutely Danielle, You can get help by seeing a doctor on this list: http://www.wilsonssyndrome.com/patients/medical-providers/
Thank you for taking the time to read this. I am in a desperate need of some advice. I got tested for under active thyroid 3 months ago. My symptoms were getting out of hand. I was seeing flashes of lights, floaters, I was having episodes of extreme coldness, pain in my tail bone, dizziness, tieredness, blues, and hair loss. My test results came out as TSH 18.6 T4 as 0.54. My doctor didn’t explain anything to me. He just gave me meds and sent me on my way. I research what levothyroxine was for , my blood results, and my symptoms and determined I had hypothyroidism. The medication he gave me haven’t made a big difference and I just recently started gaining weight like crazy. My feet hurt every morning as I get out bed. Plus all the symptoms I had before. I am fearful for my health’s future what can I do?!!! Please help me. Thank you so much
Hi Guadalupe! If your temperature on thyroid medicine is still averaging less than 98.6 then your thyroid treatment is not optimal and could easily explain your continued symptoms. You can look for a doctor near you here: http://www.wilsonssyndrome.com/patients/medical-providers/
Fluid retention is one of my largest issues with low Thyroid. I have just completed my third round of T3 therapy. During the therapy, the fluid retention gets much worse until I wean off of the T3. Some of the other symptoms / side effects can be rather uncomfortable as well.
My question for you is this; We keep our home rather cool and since I am past the age of menopause, I’m usually comfortable in just a t-shirt. I find that the non-mercury thermometer gives me a low reading in my cool house. Also, I’ve found that if I wear a scarf around my neck prior to taking my temp, I get a higher reading. The difference can be from 96 without a scarf Up to 98 with a scarf. Is it ok to use the scarf or am I creating a false reading?
And one more question. I will be traveling and prefer to not start my next cycle for 1 1/2 to 2 weeks. Plus, my body seems to need the break. My pulse doesn’t return to normal levels until I’m down to 7.5 mcg dose. Will it cause any problems to wait that long in between?
Thank you for the work you do and for getting this information out! I am hoping to feel better soon, after a few more cycles.
Hi Mary :) Most people don’t wear scarves during the treatment. We have more experience with people not wearing scarves. People that don’t wear scarves usually feel better when their temperatures are normal. People often retain a lot of benefit even when cycles are spread out. For example, I first noticed the benefits of cycling when my “snowbird” patients would be gone for months and then they would need less medicine to get their temperatures up on the next cycle when they returned.
I feels low body temprature 95-98 and my body acts as i am having fever and body seems strenthless Body seems to be hotty My Dr has no any comment What should be treatment ?
Hi Surinder :) You can get ideas for treatment on wilsonssyndrome.com
Im 32 years old , I eat healthy and drink about a gallon of water a day. My hands and feet are always ice cold. I noticed whenever i get really stressd out, i wake up and my hands are very swollen and my feet and my face. I feel as if i have gained 20lbs of water weight. This happened 2 years ago and the doctors have checked my blood several times for lupus and my blood work always comes back fine. My grandmother has thyroid issues, they have tested me for thyroid but always say everything is fine. Past 3 days woke up swollen face hands and feet and basically all over. what do i have my doctor test me for?
I recommend that they test your body temperature. The purpose of thyroid hormone is to set your metabolic rate or body temperature. Blood tests will never be an accurate measure of your metabolic rate because they do not measure body temperature. Normalizing your low body temperature (if you have one) might help your body function better.
Ok! No scarf! I was just really surprised at the difference when I had one on. LOL!
I have a thyroid on my neck and have been generating extra fluid retention in my Tommy that makes me look like an eight month pregnant ,have done scan and my doctor said all my organs are well function but could not know the cause of the fluid. Please doctor I would like to know what could probably be the cause and the remedy to stop the fluid from further generating. Thanks
Hi Abigail, low body temperatures are certainly one possible explanation of fluid retention. You could try normalizing your low body temperature to see if that helps.
Hello! I went through a very traumatizing experience one and a half year ago and it had the affect that I went to a state of very deep depression. Shortly after that I’ve felt that my appearance changed a lot and I didn’t recognize myself when I looked in the mirror. It feels like my face is SO bloated, and there is an extra layer on my face. My eyelids get thick and heavy, and the area around the eyes to, especially on both sides of the nose. When I smile, I smile differently and there are extra “wrinkles” that form. When I turn my head down, it feels like there is a heavy baggage on my face. But then I get good days in between where I actually SEE myself, the old me! I always thought this was some kind of allergy but it doesn’t seem to matter what I eat or drink, it has nothing to do with it. Also, when I have these bad days, my skin is very dry and feels like I have some kind of allergy.
I told people about it but they don’t really listen and just this morning I had a very bad experience where a skin doctor actually LAUGHED right in my face!!! He told me it was normal to look different every day, but this is not normal!! I got so angry I cried. I’m so tired of nobody listening to me and recognizing the problem. I have even been taking pictures of myself and I showed them to him, but he didn’t care. In the photos you can see obvious difference!
I strongly believe I have this wilson’s syndrome but the thing is, I’m pregnant!! I know this fluid retention isn’t related to the pregnancy because I’ve had it for more than a year and I’m only 4 months pregnant. Can I get diagnose and treatment while pregnant ? I know the hormones are already messed up.
I’m so tired of this and I just want to look like myself again, this makes me SO miserable that sometimes I don’t even want to leave the house!
So happy that I stumbled upon this website!! Thank you in advance.
Yes Salvor, WTS is treatable during pregnancy.
Hi dr Wilson
My is Liz I had a thyroid cancer did a total thyrodectomy with a dissection of the neck since I had metastasis almost 19 years ago and ever since I have never had a balance or accurate level on my levothyroxine I decided to try nature throid but it didn’t function well either I retain a lot of fluid , bloating, PMS galore it’s been horrible for me today ima try cytomel with 150 mcg of levothyroxine I’ll keep you posted of how I feel I really hope this does the trick cause I need it .
how so ? because a doctor that I talked to yesterday told me I would need to take T3 and that might hurt the baby. Is there another way ?
Thanks for the reply!! :)
Hello everyone, been through a lot and too tired and worn out, but i have a question that might sound lame:
Kelp, can i take Kelp, and will it help? all other Meds make me feel bad….long story.
I will try and sum up:
I am 51, in 1984 when i was 19, i had a swollen gland on the back of my neck, my neck hurt, next day, gland gone, but had neck pain, and pounding temples, and within a few months, the pain was all over my entire body went to endless doctors for Decades, all said in my head.
Finally in 2000 diagnosed with Fibromyalgia, i was hoping it was my thyroid, i had all my amalgams out in 2001, didnt help, pregnant with first child in 2002, i was slightly Hypo then preg with child number 2 in 2004, i was slightly Hyper but then the docs later said my thyroid was fine, even the t3 and T4 and Antibodies test all came back fine etc.. one doc let me try Synthroid for a few months, 50mcgs, but it caused Thyroid storms for me.
So i gave up the Thyroid idea.
Then in 2008, told my blood work showed EBV chronic and so that must have been what the swollen gland on my neck.
I have Fibromyalgia due to a Viral Infection of the Nervous system? ! dang, i would rather take a pill, seems a lot easier than fighting a Phantom Virus that is in the Herpes Family, and is hiding in my nerves,
i am not saying that it is easy to correct Thyroid issues, just a lot less stabbing in the dark, HOW do you fight a Virus that your Immune System will for ever be on the Hunt for?
Anyway, i DO have puffy face now and holding 30 pounds of water and this all started in 2009 when peri menopause occurred, i had panic attacks every hour and blew up, my BS was OUT OF CONTROL and was LOW, i had to eat every our small meals or die.
Happy to day that the Insomnia is better now, everything else too, my guess was Adrenal Fatigue, but i cannot tolerate cortisol, at any rate, most Docs dont buy in AF, let me tell you, it REAL!.
But get this, my Body temp had ALWAYS been 95.6 and my nails have always been brittle and wont grow, hardly have eyelashes and dont know it my decades of sore throat is from the EBV or Thyroid.
Cant take a DANG thing for pain and i have to white knuckled it for years,
Cannot tolerate ANY type of drug, sends me into crazy panic land.
So the point of my post here is…MAN, I WISH it were my Thyroid,so at least i could have a fighting chance.
BTW, Candida sucks too, got in in my Esophagus from antibiotics i took in 2012, still working on that since i cant an WONT take Drugs. PHEW!
Kelp in the past i took for the Mercury theory i had for a while, i lost weight here and there when i took it, but i was taking other things to that were natural,so i wasn’t sure if it was the Iodine in the Kelp that helped me.
cant and wont take drugs, sorry, but i will take kelp again.
Man, my face is the Puffiest thing you have ever seen and i DO NOT OVER EAT!
Thanks all, hope i did not confuse,
obviously there is something going on with my Immune System,
i never got full blown Mono in 1984, just the Epstien Barr Virus.
Yes, kelp is one thing that can provide some support for the body temperature. Alone, it may not be enough to normalize body temperatures.
A little more here…
The Same year i got the Fibro, i had Dental work done and they made me swish with fluoride, i swallowed just a little, i remember that clearly.
Cant remember how close to the Neck Gland issue that was though,
to hard to say if it was the EBV or something else that caused the Swollen gland becasue the EBV blood test wasn’t done until 2008 DECADES later !
oh, and i am on SSDI (Permanent Disability ) since 2002 for Fibromyalgia, neck pain has NEVER Stopped, not for one second of one minute, of one hour of one day, of one week of one month of one year for 31 years.
Back on neck, pain, at base of Skull.
I must say, having tried all mes (pain etc) that nothing worked, thats why i dont anymore.
AND i forgot to mention the UNHEALTHY HAIR that started that same year the Pain in neck did, 1984
cracky breaky, yucky hair, wont hardly grow.
so most likely i have Low Thyroid and Chronic EBV, but i wish it were simpler. I wish i could PIN point and fix the muscle pain and spasms, now i know why they called in RHEUMATISM i the old days.
Thank you Doc Wilson :)
Hi Dr. Wilson,
I’m at my wits end and need help. I am a 30 year old female and I gwt about 4-5 hours of physical activity (farm chores) 7 days a week.
Three years ago I read your website and starting taking my temperature religiously; it was usually around 95-96°. I was also 85 lbs overweight and no amount of diet or exercise could help me. I went to my GP with printouts from your website and my temperature record; he took my temperature (about midday) and it was around 97.5° then so he quickly dismissed me and told me I just need to lose weight the old fashioned way. I wouldn’t give up though, I was positive I had a thyroid problem. So I took matters into my own hands and ordered natural dedicated thyroid from overseas. I started taking it and I could instantly feel a difference. I started to easily shed weight when I dieted and my temps were up to 98.4° daily. I should also note that I was on birth control at the time.
All was well and good until I decided to take a break from birth control. At this point, I had lost 85 lbs and I was on 4 grains of NDT. After being off the birth control for one month, I had an evening where my heart was racing at 120 bpm when I went to bed and it scared me. So I took a day off of the NDT because I thought it was the cause. After that day, I stopped feeling any effects from the NDT. I even tried a different brand.
It was then that I started gaining weight. I would gain 5 pounds in a weekend and I was only eating around 1100-1500 calories (I weighed 140 lbs). I have kept gaining and I’m now up to 165 lbs. I also never got my period back for the 6 months I was off BCP. I thought it was maybe the birth control, so I went back on it. I stopped gaining, but felt, as I had for the past 6 months, like I had a complete lack of hormones (like menopause). Since then, I have continued taking the NDT and I have not felt the effects; I even got up to 7 grains a day! I am now back on 4. My temperature is 98.1° daily.
I’ve been to my doc and an endocrinologist; they found a 12 mm tumour in the middle of my pituitary. Endo said i had hypothyroidism from it and pyt me on obe grain of Thyroid (NDT here is Canada). Again, no change. I’ve just been steadily gaining water.
I went to a naturopath and she said I have adrenal fatigue. She told me to do an elimination diet and I’d lose the water. I’ve been doing the diet for 3 weeks and I’m still gaining. I need help desperately!!!
Hi Dana, according to me, if your temperature is low your metabolic rate is low, by definition. If your TSH is normal and your temperature is low then you might not be converting and utilizing the NDT optimally. You might benefit from T3 only therapy and I’d be happy to discuss that approach with your physicians for free (802 262 6100, they can call to arrange it). Good luck :)
To treat Wilsons Temp syndrome you have to treat the liver like taking artichoke extract and get zinc and selenium up as your T4 converts in the liver and gut. Gut-wise make sure you don’t have candida overgrowth (fungal/yeast overgrowth) these can prevent treatment with T3.
Hi Dr. Wilson,
Wow, thank you so much! I am seeing both my doctors today, so hopefully I can get something going. Cheers :-)
Hello, I had my thyroid removed 3 years ago. I had suffered with Hashimotis for years and I had devoloped a nodule. The endo decided to go ahead and remove the gland. When removed I was put on Synthroid and all the swelling went away. I have my levels checked every 3 months, but I have been suffering from swelling again. I have had so much swelling it has caused some neuroma in my feet. I’ve been to Doctor and they have checked me for different auto immune diseases, but they all come back negative. What can I do to get the swelling off of my body. Everything swells, feet, legs, ankles, elbows, hands, and face. Makes me feel miserable.
You can check your temperature. People with low temperatures can have swelling. It’s a very common sign of low temperature. Normal thyroid function is supposed to prevent that. Unfortunately, adjusting Synthroid to give someone a normal TSH test does not guarantee the patient will have a normal body temperature. I’m saying that when your thyroid hormone is adjusted to provide you a normal temperature, you may not experience as much, if any, swelling.
I have taken armour since I was 18. never had any issues and had two kids, and have always been healthy. In 2010 I fell and injured my C5-C6,, which then everything spiraled .. within 6 months I had Hashimotos.. and could barely work. I was on armour at the time, so they gave me Cytomel. This put me in the hospital literally.. so I have never gone on T3 again.. I have a large nodule as well. I did have a biopsy and it is not cancerous. I am gluten free, grain free. and watch my diet. I have always worked out and even a personal trainer for many years. I have my degree in Exercise Science etc. It has been a rollercoaster since 2010 . I have gained 20 pounds even though I have tried literally everything. I am now taking Naturethroid.. I take 1 1/2 grain in the morning,, and 1 1/4 grain in the afternoon. I supplement with Vit D, Selenium, occasional Zinc and probiotics every day. I take flax seeds, and also bio identical progesterone because I seem to be estrogen dominant. I dont sleep well. I possibly have sleep apnea which is my next appt. I really dont want to go down that road with a CPap etc. Currently.. my blood work show TSH 0.678, Free T4 .93, and Free T3 is 2.9. I have not done the Reverse T3, or taking my temperature like your website shows. Could this be the last of the missing pieces ? I am worried about asking my doctor to place me on T3… I am already taking quite a bit of the Naturethroid.. which my labs still show my Free T3, as a little low as well as the Free T4. I have spent thousands on doctors, specialists, Naturopaths, I am a single mom of two kids. and I have read tons of books on thyroid, auto immune diseases etc. I just want to feel better.. So tired all the time.. but still do my workouts and yoga.. I am trying everything I can. Anything you think is missing let me know. ;) Thanks so much.
I can’t dispense medical advice, but you may want to read about T3 and show this to your doctor as a possible option: http://www.wilsonssyndrome.com/restore/t3-sustained-release/
Best of luck with getting back on track!
Hi Dr. Wilson, I’m a 35 year old female from London England. In 2007 I came back from holiday and my left foot was swollen (water retention build up). I went to the doctors and the tested me for various things including DVT and liver, kidney functions, etc. Everything came back negative and through a series of blood tests it showed that I had an under active thyroid and I was prescribed levothyroxine. In 2010 I had a baby everything was fine however my arms started to feel week. In 2012 I woke up one morning and both my wrist were swollen. My fingers started to swell and both really hurt. I had another baby in February 2016 but when I was 8 months pregnant I developed pain and fluid on my right knee. Now I also have swelling on my left knee. I’ve been tested for arthritis however blood tests have come back negative so has MRI scans. Nearly 10 years later I still have the fluid in my left foot it has never gone away it has reduced however when I’m not stressed but it never goes down fully. Now my foot, both knees, both hands, wrists and fingers are swollen and it’s really difficult to function. I have 2 young children and I struggle to hold my 12 week old baby. What do you suggest I do to get rid of the fluid? I think it might be carpal tunnel in my hands. I just really want to be able to do stuff again for my children and me.
Hi Natalia :) I’m very sorry to hear of the difficulty you’re having. Fluid retention can be a very difficult problem to have and to treat. However, I have seen that normalizing low body temperatures can be helpful. Wilsonssyndrome.com has some ideas on things you can do to try to help normalize your body temperatures. Good luck :)
I have been on the Wilsons Protocol for 5 months now, taking T3 (starting at 7.5 and fradually working my way up to 90 – then all the way down again). Since doing this under supervision of my doctor I have onlt gained weight and my symptoms simply became worse! Water retention, bloating, tired and dry hair. My clothes dont fit anymore, even my largest clothes are tight and uncomfortable. i am so discouraged.
I eat a 100% clean diet, nothing refined and mainly a whole fods diet. I do yoga daily and work out a few times a week. Im 1.65m and way around 75kg (about 15kg overweight). I dont k ow what to do amymore – we have tried so many things amd the T3 was my last hope! I dont know what to do anymore.
Hello, I’m sorry I can’t offer advice over the internet. You may want to talk to your doctor about other options.
Hello Dr. Wilson, Have you had patients with underactive thryroid ever complain of symptoms where they feel like they are being shocked. I have had these episodes on and off over the years. I take 25 Levothyroxine and 97.5 of Naturthroid for my hypo-thryoid condition.
Hello, I’m sorry, I’m not familiar with that.
I was diagnosed with myxedema March 2015. I’ve been on Armour, and have lost about 25 pounds, however, I still have water retention in my lower legs. It cuts off at the end of my legs. It’s been this way for 10 years, so I can understand the build up, but I’m very impatient! I want it to go away. Is there anything else I could do, or is this possibly also lipoedema?
Hello, I’m sorry I don’t have an answer for you, but please consult with your physician. Best of luck!