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Looking for a doctor in UK, or Europe who treats Wisons Syndrome

RobinPaulWilliams profile image

Hi all

I've been experimenting with all sorts of atrategies to get my energy back; just recently I have been getting my temperature up artificially, then I completely cut grains, and for the last week I gave been swimming daily despite the tiredness in the hope that my body would rebalance... Nothing I've tried yet seems to have helped so far. My labs are and always have been normal (since June)

The next strategy on my list is to try out T3 therapy for Wilson's Syndrome - However I can't seem to find any Wilsons Syndromw practitioners either in Italy (where I live) or the UK (where my family lives). Can anyobe please point me in the right direction?...

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RobinPaulWilliams
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11 Replies
Clutter profile image
Clutter

RobinPaulWilliams,

Wilson's Syndrome isn't a recognised medical condition so you won't find a doctor to treat it.

Read healthunlocked.com/thyroidu... warning against using Wilson's T3 protocol and see Jimh111's comments re Wilson being struck off after one of his patients died of a heart attack.

Hi Clutter.

When I first read about WTS, I believed the negative stories about it. However, as I am desperate to regain my health, as we all are on this forum, I recently started taking an interest in low body temperature as a fundamental factor in my hypothyroid-like symptoms.

I have since researched into Wilson's Syndrome and read Dr Wilson's book. his arguments are convincing to me. Also the dirty-tricks of the medical establishment are entirely believable to me and the dogmatic insistence on TSH as their gold-standard of tests. I am ready to try something that I believe could help me. Taking T3 in itself is not a problem, it being a natural substance that our own bodies produce - I guess that in order not to die of a heart attack, all I need to do is take safeguards... and do so under the supervision of a professional!

I understand that WTS is not "officially" recognised, but is there really no-one who would be willing to prescribe T3 therapy? I am reluctant to go this alone, but I will if I have to :-(

shaws profile image
shawsAdministrator in reply to RobinPaulWilliams

Dr Lowe, for his patients, he would never prescribe levothyroxine. He only prescribed NDT and for thyroid hormone resistant patients T3 only.

Dr L was also a scientists/researcher.

shaws profile image
shawsAdministrator

This is an extract from an archived link which was one of our Adviser's before his untimely death. It is about Wilson's Syndrome and the following is an excerpt:

"A popular belief nowadays (proposed by Dr. Dennis Wilson) has not been proven to be true, and much scientific evidence tips the scales in the "false" direction with regard to this idea. The belief is that the process involving impaired T4 to T3 conversion with increases in reverse-T3 becomes stuck. The "stuck" conversion is supposed to cause chronic low T3 levels and chronically slowed metabolism. Some have speculated that the elevated reverse-T3 is the culprit, continually blocking the conversion of T4 to T3 as a competitive substrate for the 5’-deiodinase enzyme. However, this belief is contradicted by studies of the dynamics of T4 to T3 conversion and T4 to reverse-T3 conversion. Laboratory studies have shown that when factors such as increased cortisol levels cause a decrease in T4 to T3 conversion and an increase in T4 to reverse-T3 conversion, the shift in the percentages of T3 and reverse-T3 produced is only temporary.

To answer your question: In a 1994 article, I did write of my testing of fibromyalgia patients for laboratory evidence of elevated reverse-T3. [Lowe, J.C., Eichelberger, J., Manso, G., and Peterson, K.: Improvement in euthyroid fibromyalgia patients treated with T3. J. Myofascial Ther.,1(2):16-29, 1994.]

During one year, I tested 50 fibromyalgia patients to see if they had laboratory values that would suggest that they had impaired conversion of T4 to T3 with elevated reverse-T3. I've also tested other patients since 1994. However, I have not found laboratory evidence of impaired T4 to T3 conversion in a single patient.

web.archive.org/web/2010103...

If you have a print-out of your most recent results with the ranges, if you can post them on a new question for comments.

Blood tests for thyroid hormones have to be taken at the very earliest possible, fasting and allow a gap of 24 hours between last dose of levo and the test and take afterwards. This helps TSH to be at its highest.

shaws profile image
shawsAdministrator

Maybe some of these chapters may be be informative for you. They are from a book Dr L wrote:-

Chapter 2

web.archive.org/web/2010103...

Chapter 3

nebula.wsimg.com/b822d36efe...

Chapter 7

web.archive.org/web/2010112...

Hi Shaws

Many thanks for the excerpt and many thanks for the links to Dr Lowe's thoughts on the matter. I will definitely read them all, as well as re-read Dr Durrent-Peatfield's thoughts in his book, which I have.

One thing that despite my "normal", middle-of-the-range labs, my temperature does seem out of whack. My oral temperature is never above 36.7C and is normally closer to the 36.0C mark. I wear lots more clothes than others in the room and often feel cold when they don't! One thing that is confusing me is that my Rectal temperature (yes I have even resorted to taking this daily) is normally in the 37.2C range and oscillated between 36.8 and goes as high 38.0 (after swimming). My Rectal temperature would seem to be about right, whereas my Oral temp is ALWAYS low...

My latest thyroid labs: TSH: 1.74microU/ml (0.3-3.75)

FT4: 10.6pg/ml (7-15)

FT3: 3.42pg/ml (2-4)

Yours confused (and desperate!)

Robin :-(

jimh111 profile image
jimh111

The Wilson protocol is dangerous and isn't backed up with good science. Wilson could carry out a trial to show abnormal rT3 levels but has failed to do so. Some patients do have hypothyroidism with normal hormone levels and require supraphysiological doses of L-T3. This suggests peripheral resistance to thyroid hormone not the self named Wilson's Syndrome. I know others might disagree but body temperature is not a specific marker for hypothyroidism, it's a useful addition but not good enough to rely on.

Looking at one of your previous posts I notice you had a normal TSH with low normal fT3 and fT4, which suggests impaired pituitary output. This will probably respond to liothyroine but by working up slowly whilst monitoring your symptoms and pulse. The Wilson protocol is not appropriate.

RobinPaulWilliams profile image
RobinPaulWilliams in reply to jimh111

Thanks Jim, thats a really interesting lead. Can you tell me where to research this further? Would I take liothyronine (T3) for life, of just for a period, whilst my endochrine system readjusts back to normality?

jimh111 profile image
jimh111 in reply to RobinPaulWilliams

From a research point of view you could search PubMed for 'down-regulated pituitary thyriod axis'. This can be caused by strict dieting, depression, some concurrent illnesses or having had a suppressed TSH for some time. You may possibly need liothyronine indefinitely although I always try reducing my dose a touch every month or two, just to confirm I'm on the minimum effective dose.

I'm not actually sure you have a thyroid problem, your numbers are OK (but symptoms are more important), and you have a lowish body temperature and feeling tired. Do you have other symptoms as tiredness can be due to a number of issues.

RobinPaulWilliams profile image
RobinPaulWilliams in reply to jimh111

Hi Jim. One of my symptoms is a stomach that has always been a little rounded, even in periods when I have been extremely sporty! I have also had frequent outbreaks of candida infection. I have noticed that after swimming that, if I don't eat something (like a banana) immediately afterwards, my energy level collapses. I don't see anyone else at the pool changing-rooms with bananas in their hands!

I am currently working on a new theory that I might have Candidiasis and possibly a "leaky-gut". If this is the case then it might explain that my intestines are not converting enough T4 into T3... I have been on a (anti-)Candida diet now for a fortnight and am feeling a little rough, with constant acid-reflux and my poo is dark-brown. I imagine that this is the famous Herxheimer toxicity reaction from the Candida die-off...

My thyroid blood tests are all mid-range "normal" and I have never yet taken thyroid medication.As I am gleaning from others who have sub-optimal health, I am trying a number of avenues at any one time. I am considering taking NDT (which I have 2 bottles of) to help me through the Candida clean and kick-start T3 conversion. I am not quite convinced yet that this will be of help, but working on a few theories around T3 production and absorbtion...

jimh111 profile image
jimh111 in reply to RobinPaulWilliams

Candida and abdominal bloating can be caused by low magnesium levels, so you could try supplementing with magnesium citrate. Note that magnesium blood tests are no use as they don't determine intracellular levels which are not reflected in blood levels.

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