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Patient Orientation Sheet

Patient Orientation Sheet

The information on this sheet summarizes what you can expect during the WT3 protocol. You can use it as a road map to help you navigate the treatment. If you decide to pursue the WT3 protocol you should also read the Doctor’s Manual for Wilson’s Temperature Syndrome, which explains the treatment protocol in full detail. It is very user-friendly and we recommend that you read it from beginning to end. The good news is that if you are a good candidate for the WT3 protocol and you are willing to work at the protocol your chances of being cured are excellent!

How do you know if you are a good candidate for the WT3 protocol?

1. If you have a symptom or symptoms consistent with low thyroid system function (See Wilson’s Temperature Syndrome Symptom Checklist)
2. If you have an average body temperature that is less than 98.6
3. If there are no other likely explanations for your symptoms

It is important to understand that Wilson’s Temperature Syndrome cannot be diagnosed with thyroid blood tests. The primary role of thyroid blood tests in this condition is to make sure that you don’t have other thyroid conditions. This is a hallmark of this condition and its treatment. It’s often difficult for doctors and patients to understand how symptoms can often be cured with thyroid medicine even when thyroid tests don’t show any problems. Like many other conditions, Wilson’s Temperature Syndrome is a diagnosis of exclusion- a diagnosis that is presumed by ruling out other factors. The diagnosis is confirmed by therapeutic trial-which means if you respond to the treatment, that’s a good indication that you were suffering from the condition.

What the WT3 protocol entails

It’s important that you realize what is involved in the WT3 protocol before you start. If you decide to pursue the WT3 protocol it is very important that you comply with the protocol. This involves taking medicine every 12 hours precisely to the minute, as well as monitoring your pulse rate and body temperature on a daily basis. You should count on the treatment requiring a minimum investment of 3-6 months to complete. You will need to visit your treating physician about twice a month, although people with more complex cases often need to come in more frequently. Most patients have at least 8 office visits. Experience has shown that patients who have adequate support and supervision from their doctors usually make fewer mistakes, are more likely to stick with the protocol, have more success, and are happier with the treatment. You may want to think it over for a day or so before deciding if you’re ready to commit to this therapy.

What to expect from the WT3 protocol
Up to 20% of patients may find the regimen too demanding and give up before completing the treatment. Of patients that are willing to do the work and stick with the treatment, the following results might be typical:

1. Within 3 months, about 70% of patients successfully finish the treatment. 90% finish within six months. One year is the maximum treatment time for the remaining 10%.
2. About 20% of patients feel worse before they felt better.
3. 90% of patients are cured of most of their complaints. At times certain symptoms may persist after the treatment. Most patients get to the point that they may have only one or two symptoms left out of the possible 50+ Wilson’s Temperature Syndrome symptoms.
4. People typically feel the best when their temperatures are 98.6 and they are off the medicine. Only some people feel extremely well while at 98.6 and on the medicine.

Background on the WT3 Protocol
the WT3 protocol involves taking incremental doses of a thyroid hormone called T3 which is mixed with a sustained release agent. The dose is increased and then decreased until the body temperature is restored to 98.6 degrees Fahrenheit. Most patients are not able to normalize their temperatures on the first cycle. The protocol involves additional cycles until the patient is able to maintain their temperature at 98.6.

How to get started on the WT3 protocol
Before beginning the treatment, you should fill out the Wilson’s Temperature Syndrome Symptom Checklist. Rate the severity of each symptom with a number. That way, you’ll be able to compare your progress over time. Once you start feeling better, it’s easy to forget how bad you felt before!

Taking your temperature
When patients start with temperatures of less than 97 degrees, it can take a while before their temperature gets into the 98.6 range. If your temperature is nowhere near normal, you can take your temperature once a day. But as your temperature increases to 98.1 or 98.2 it is important that you take your temperature at least twice a day. Take the average by adding two temperatures and dividing by two, or by adding 3 temperatures and dividing by 3.

Taking your medicine
In the morning, before you take your first dose of T3, you should check your pulse rate. Use a watch with a second hand and count your heartbeats for 60 seconds. It is easiest to feel your pulse on your wrist or on your neck. T3 medicine needs to be taken every 12 hours, twice a day, at the same times every day (for example, 8am and 8pm). Try to take the T3 exactly on time every day-not even a few minutes late! If you find out after starting that another time would be more convenient, you may change it- but your doctor may advise you to wean yourself off the medicine and start a new cycle. It’s best to choose your time carefully from the beginning.

The starting dose is 7.5 mcg of T3, twice a day (7.5mcg in the morning, 7.5 mcg in the evening).

Cycling up
If your temperature remains below 98.6, and you are without complaints, you may increase the dose by 7.5 mcg every day. That means that on the second day you would take 15 mcg in the morning and 15 mcg in the evening, the third day you would take 22.5 mcg in the morning and evening, etc.

Do not increase your dose if:
1. You have a resting heart rate of over 100 beats per minute or if you have any disturbing complaints, such as significant heart palpitations (disagreeable awareness of your heartbeat). Your doctor may also not want you to increase your dose if you are having other side effects such as worsening migraines, panic attacks, or fluid retention. Check with your doctor if you are uncertain whether or not to increase your dose.
2. Your temperature has reached 98.6 or higher, on average.
3. You reach the maximum dose – 75mcg, twice a day, or the maximum indicated by your doctor.
It’s worse to have a pulse rate over 100 than it is to have a temperature over 98.6. If you increase your dose when your resting pulse is over 100 you can start getting unwanted side effects. On the other hand having a temperature a little over 98.6 can give you some extra leeway as you wean down off the T3.

Capturing the temperature

The Three Most important Things To Remember
1. Take the T3 on time.
2. Write down your pulse rate every morning.
3. Pay attention to any disagreeable awareness of your heartbeat.

When your temperature reaches 98.6 you can stop increasing your T3 dose. Keep an eye on your temperature because your temperature will likely go down again. This is called compensation and is perfectly normal. When this happens you can simply continue cycling up to get your temperature back up to 98.6, (unless you’re already on the maximum dose). When your temperature averages 98.6 on the same dose of T3 for 3 weeks, you have captured your temperature. This means that the hard part is over! When this happens you should plateau at that same dose until your next appointment with your doctor.

Plateau
If your temperature is still low even though you can’t increase the dose any higher (either because you can’t tolerate a higher dose, or you’re on the maximum allowable dose) then you can stay on that dose for a time and then wean down in preparation for your next cycle. With each cycle, patients often are able to increase their temperatures with lower doses than were required on previous cycles. You may stay on a plateau for a few days or a few weeks depending on your doctor’s advice.

Weaning
It’s important to wean the T3 slowly enough that your daily average temperature doesn’t drop. Some people can decrease their dose every two days but others may need to slow it down to every four or eight days. The danger of weaning too quickly is that your temperature can drop more than .2 degrees Fahrenheit. It’s more important to monitor your temperature while you’re weaning off than when cycling up, to make sure you don’t lose any of the progress that you’ve made.

Between Cycles
Usually you can stay off the T3 for two days before starting the next cycle. If you are still having any side effects from the T3 once you’ve weaned off, you should wait until you have been free of side effects for 2-3 days before starting the next cycle.

If your temperature doesn’t go up on the first round, it usually will on the second.

Protecting Against the Side Effects of the WT3 protocol

Possible Side Effects from treatment
1. Fluid retention or puffiness
2. Flu-like feeling and/or aches
3. Dull headache
4. Irritability
5. Anxiety
6. Increased awareness of heartbeat / increased heart rate
Side effects occur more often when patients don’t take the T3 on time (to the minute). This can result in side effects or decreased benefits for up to 2 weeks.

T4 or Synthroid is almost identical to T3 only it is much weaker and longer acting. Therefore, it can act like an antidote for T3 treatment. The following are standard procedures for side effects on the WT3 protocol.

1. Your doctor may instruct you to take .0125 mg of T4. This usually helps within 45 minutes of the dose. If in 45 minutes the symptoms are not totally resolved the T4 dose may be repeated. It is not advised to take more than 3 doses of T4 in one day. All WT3 treatments and instruction of the use of T4 need to be done under the supervision of a physician. Patients who need more than this to manage side effects often need to wean off the T3 and start up a new cycle.

2. If the symptoms persist you should call your doctor back. You may be instructed to wean off the T3.

Patient Support
If you’d like to talk to another patient who has gone through the treatment, your doctor’s office may be able to put you in touch with one. There are many patients who have completed the treatment that are willing to share their experiences with others. You can also look at our website (www.wilsonssyndrome.com) to read patient testimonials.

Sticking With It
the WT3 protocol takes work and dedication. But the results might change your life. Good luck!