Thank you for accepting me in this forum. I have been ill since my thirties (I am now 67) and was diagnosed at 50 with Hashimotos, it seems to be hereditary as my mother and two sisters also have it. I was put on only 25mg of thyroxine and from that moment on I was a lot worse. I asked if I could go off it, as it was such a small dose and I feel worse than I did before the medication, but was not allowed to. Because of the lack of support from my GP I managed my situation myself with a gluten free diet, good diet and vitamins. It worked to a degree. The thyroxine made my hair fall out alarmingly. To cut a very long story short, I kept on researching and recently came across the treatment for something called Wilson's Temperature Syndrome. Which claims to treat people like me (stubborn cholesterol levels, fatigue, hairloss, etc.) with T3 compound, which can (not always) lead to recovery from the above symptoms. I aim to try this but cannot find a doctor in England that can treat me - my question is "has anyone heard of this", and if so, can they give me the name of a doctor in England. Thank you for listening.
Wilson's Temperature Syndrome: Thank you for... - Thyroid UK
Wilson's Temperature Syndrome
1piglet
If you post your latest thyroid test results with their reference ranges, members can help.
25mcg Levo is a starter dose and you are probably very undermedicated. To start with you would need an increase in Levo, not T3. The aim of a treated hypo patient generally is for TSH to be 1 or lower with FT4 and FT3 in the upper part of their ranges if that is where you feel well.
You probably have low nutrient levels too so should get those tested.
The tests you need are
TSH
FT4
FT3
Vit D
B12
Folate
Ferritin
Post your results on the forum and members will comment. Also say what you are supplementing with and the doses.
Thank you for your reply. I have had my Vit D, B12, Magnesium and Ferritin tested privately - all within normal range. I have asked my GP for T4, T3, reverse T3 and antibody tests, several times - but all he ever tests for, and says that's all I need, is TSH. My problem is, although I haven't felt right for a very long time, my problems really escalated when I went on the T4 and because I am on such a low dose, I wonder if I need it at all and that I have this Wilson's Temperature Syndrome. It rang a bell with me because I remembered when I had a hysterectomy, many years ago, that they wouldn't let me out of hospital for a fortnight because my temperature was too low. In the end they had to let me out and said that it was possibly normal for me. I have tested it again recently and it is consistently low. I think the first step is to have the whole thyroid panel done privately. Thank you again for your interest.
1piglet
Being within normal range doesn't mean that levels are optimal, ranges can be very wide and we feel vastly different from being low in range to being at optimal level, so if you post your results we can see if you are low in any of your vitamins and minerals.
Many people feel worse when starting Levo, and keeping you on such a low dose without following protocol for retesting and increasing dose is negligent.
It would be a good idea to have full testing privately but I wouldn't bother with reverse T3. It's expensive and generally FT4 has to be high to make rT3 and on your dose of Levo you're not going to have a high FT4. You will very likely find that your TSH is too high, your FT4 and FT3 are low, and it's low FT3 that causes the symptoms. T3 is the active hormone that every cell in our body needs.
Low temperature is a symptom of hypothyroidism.
Thanks so much for your help, I shall get the tests you suggest privately and let you all know the results. My only worry is that, as I said, although I had a slight hair loss before I was medicated, even at 25mg, my hair loss intensified and I have lost so much hair it's soul destroying. I shouldn't be vain at my age!
1piglet
There's an interesting article about hairloss and vitamin and mineral deficiencies here
healdove.com/disease-illnes...
Thanks for that, great article. I have been taking Perfectil (hair vitamins) for the past two months now and was pleased to see that out of the list of supplements suggested in that article, the Perfectil provided all but Vit A, Beta Carotine and Inositol! So it's good to see that I am on the right track! The nutritional value of each probably wasn't as good as it should be mind.
Finally, had some results back. I also asked for TPO and TG thyroid antibodies - but received liver results!! Unfortunately, I live in Spain and often things are lost in the translation! Anyway, I will show you what I have:
T3 79.42 ng/dl (62.00 - 163 ng/dl)
T4 7.91 mcg/L (6.09 - 12.23 mcg/L)
TSH 3.66 mcU/mL (0.25 - 7.00 mcU/mL)
Note: Hyperthyroidism ............ Less than 0.15 mcU/ml
Hypothyroidism ............ More than 7 mcU/ml
Magnesium 2.6 mg/dl (1.80 - 2.60 mg/dL)
Vitamin B-12 320 pg/mL (180.00 - 850 pg/mL)
Ferritin 72.39 ng/mL (20.00 - 300.00 ng/mL
Vitamina D (25 OH Calciferol) 37.00 ng/mL Deficiencia: Less than 10ng/mL
Insufficienia: 10-29 ng/ML
Sufficiencia: 30-100 ng/mL
Tixucudad: More than 100ng/mL
1piglet
Your TSH is too high. The aim of a treated hypo patient generally is for TSH to be 1 or lower with FT4 and FT3 in the upper part of their ranges if that is where you feel well.
Unfortunately it's hard to comment on your T4 and T3. We need Free T4 and T3 and I don't recognise those ranges and wonder if they are Total T4 and T3, in which case they are of no use.
It's possible the T4 is Free T4 and if so it's far too low, again confirming undermedication.
But you already know from previous replies that 25mcg is a starter dose and you should have had an increase long before now. Retesting every 6 weeks, with a 25mcg increase in Levo each time until your level is where it needs to be for you to feel well is the normal protocol.
**
B12 is too low, it needs to be over 550 according to an extract from the book, "Could it be B12?" by Sally M. Pacholok:
"We believe that the 'normal' serum B12 threshold needs to be raised from 200 pg/ml to at least 450 pg/ml because deficiencies begin to appear in the cerebrospinal fluid below 550".
"For brain and nervous system health and prevention of disease in older adults, serum B12 levels should be maintained near or above 1000 pg/ml."
Because B12 and Folate work together, you should also have Folate tested.
**
Vit D is slightly low, the Vit D Council recommends a level of 40-60 ng/ml. Maybe you make enough from the sun as you live in Spain, if not then you could supplement with D3 but you wouldn't need a large dose, maybe 1000iu in summer, 2000iu in winter, you'd have to retest 3 months after starting to see where your level is then and adjust if necessary. It's important to take D3's cofactors - Vit K2-mk7 and magnesium, but your magnesium level is at the top of the range already although apparently testing magnesium isn't particularly reliable.
**
Ferritin us just about OK, it needs to be at least 70 for thyroid hormone to work. I would eat liver every couple of weeks, plus other iron rich foods, to give your level a bit of a boost.
As I understand it, Wilson's syndrome is very much discredited these days - Dr Wilson's course of treatment directly caused one of his patients to die, and he was struck off.
As Seaside Suzie said, the likely culprit is being under-medicated. I hear a lot of people often feel worse when put on a mere 25mcg, but usually feel better when dose is increased. If you share your results, people will have some great advice to help you out.
The standard starter dose is 50mcgs and then dose is increased in 25mcg steps until TSH is around one and FT4 towards top of range and FT3 at least half way in range
NICE guidelines saying how to initiate and increase.
testing 6-8 weeks after each dose increase, not 4 weeks as it says in this link
Note that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine
cks.nice.org.uk/hypothyroid...
Can you add your actual results and ranges on the vitamin tests. These need to be optimal , not just in range
For full Thyroid evaluation you need TSH, FT4, TT4, FT3 plus TPO and TG thyroid antibodies. Plus vitamin D, folate, ferritin and B12.
Essential to test thyroid antibodies, FT3 and FT4, plus vitamins
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies
thyroiduk.org.uk/tuk/testin...
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.
All thyroid tests should ideally be done as early as possible in morning and fasting.
If on Levothyroxine, don't take in the 24 hours prior to test, and if on T3 don't take in 12 hours prior to test, delay and take straight after
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)
If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).
As you are on gluten free diet, you probably have Hashimoto's
About 90% of all hypothyroidism in Uk is due to Hashimoto's. Low vitamins are especially common with Hashimoto's. Food intolerances too, especially gluten and dairy
No one can force you to take medication. However, hypothyroidism, if untreated or undertreated (which you probably are) can cause (a slow) death from heart problems and dementia. You need a full thyroid test, Free t4,m free t3, TSH, TPO and TG antibodies, B12, folate, vit D and ferritin. The post the results and someone will advise. You can buy your own T3 (or levo) and import it into the UK for your own use, but you may find it difficult to find someone to monitor you. On such a small dose, it is really impossible to tell whether you have thyroid hormone resistance.
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