Suppressed TSH

[cmh0908w]

A former patient of Dr Skinners living in Bristol. I was diagnosed 16 years ago with hypothyroidism. After Dr Skinner sadly passed away I was lucky to find a sympathetic GP who was happy to prescribe my NDT and thyroxine for me on the NHS. Unfortunately he retired in 2015.

Since then I’ve had several disagreements with my new GP who insists I am over medicated because of my suppressed TSH and slightly over range FT3 and FT4. I was last tested for all 3 in December 2016:

TSH < 0.02mU/L (0.27-4.2)

FT3 7.6pmol/L (3.1 – 6.8)

FT4 27.4 (12-22pmol/L)

B12 216 (180-900pg/mL)

I've kept the NDT at 2 grains, but my GP reduced Thyroxine from 100mcg to 75mcg. I don't feel quite as good on this lower dose. I struggle to lose weight, (I've always been overweight), my memory/concentration isn't as good. I was also getting numbness/tingling in my fingers, my B12 was very low 216 (180-900pg/mL)

. My GP said it was irrelevant because it was in range. The numbness has disappeared after using B12 spray.

When I reduce or increase my Thyroxine from 75mcg to 100mcg my T3 levels also go up or down as you’d expect. My body would appear to be converting the T4 to T3, surely it wouldn’t do that if it didn’t need the extra T3?

My GP phoned me in July to tell me that my NDT medication is costing the NHS £150 per month, is on a ‘red’ list and so unfortunately, it can no longer be prescribed on the NHS. He referred me to an NHS endocrinologist who I saw at Southmead hospital on Friday.

The endocrinologist also thinks I am over medicated, yet I have no clinical symptoms at all, never have done. He said I have sub-clinical hyperthyroidism because of the suppressed TSH. Eventually I’ll get atrial fibrillation and osteoporosis (heard this all before many times).

I tried to point out that the blood tests only measure what’s circulating in the blood and not cell/tissue uptake and maybe I need higher T3 levels for it to get into my tissues. I also mentioned reverse T3 could I have too much of that or Thyroid hormone resistance? He brushed over these points and didn’t seem interested in my opinions. He said my TSH would be much higher if I had Thyroid hormone resistance.

He advised that I should reduce my NDT to 1 grain and Thyroxine down to 50mcg so that my TSH goes above 0.1 and my T4 and T3 are within range. Legally he must stick to current guidelines and referred me to the BTA and AACE websites.

He also told me that GPs can no longer prescribe NDT not even on a ‘named patient basis’. They used to be able to prescribe what they like but now the system will flag it up. A few of the patients at Southmead are taking NDT but they buy it themselves. The endocrinology dept are happy to monitor my use of NDT but only if I first reduce my dose and come and see them again in 2/3 months’ time.

I’m not happy about cutting my dose in half. I could become quite ill. Do I really need to prove that I need my medication? He also said that it could take a year for my TSH to go above 0.1.

Has anyone else been told to do this. Do any of you have slightly over the range T3 with no symptoms of hyperthyroidism? Dr Skinner always relied on clinical symptoms rather than looking at blood test results. I don't have to take the endocrinologists advice but I do need to understand the long-term risk of a suppressed TSH so I can workout the best way forward.

Any help or guidance would be really appreciated. If you could also please PM me recommendations of online pharmacies. I need to buy Levothyroxine and NDT (ERFA, Nature Throid). Thanks again

[shaws]

Dr Skinner is very sadly missed. He was hounded by the Authorities as he treated patients - as all doctors were at the time he was trained - upon clinical symptoms alone.

Could you contact the Vaccine Research Trust (his office) and the staff there may be able to advise on a doctor who uses a similar method as Dr. S.

I did a post earlier of details I got when Dr Afshad Ahmed when she was at the Thyroiduk.org.uk Conference and her and her staff are very excited and hopeful.

healthunlocked.com/thyroidu....

healthunlocked.com/thyroidu...

Personally, I would do my own thing if I was faced with intransigent doctor especially when most of us realise that blood tests are not always accurate when they ignore clinical symptoms. If your health is going backwards you have to make a decision of what you are going to do. Nowadays few doctors know anything about NDT and besides the BTA have made false statements about it as well. Patients know what suits them.

When we take NDT it cannot in any way compare to the tests for T4. T4 (levo) is inactive and has to convert to T3. So therefore if we take NDT which contains T4, T3, T2, T1 and calcitonin they tests cannot be identical and it is how we, the patient, feels on a dose which is the proof of whether or not we are on the correct one for us.

[cmh0908w in reply to shaws]

Thanks shaws for your reply and advice. Dr Skinner was such a great doctor. I really miss him. I always looked forward to my appointments with him at his clinic. You can't say that about many medical professionals especially endocrinologists! I dreaded going to my endocrinologist appointment on Friday, a one way conversation most of the time.

I'll get in touch with the Vaccine Research Trust. I met Afshan a couple of times at the clinic, very nice lady. I really do hope they can publish Dr Skinner's work. I'll definitely make a donation.

[Clutter]

cmh0908w,

Assuming you are leaving 12 hours between last dose of NDT and blood draw you are biologically overmedicated because both FT4 and FT3 are over range. Your endocrinologist (and mine) are concerned with suppressed TSH but I think it is high FT3 which is concerning. Read Treatment Options in thyroiduk.org.uk/tuk/about_... Email [e-mail] if you would like a copy of the Pulse article to show your GP.

My endo thinks my TSH is over suppressed at <0.01 and would prefer it around 0.05. Three dose reductions over 2 years didn't budge TSH although FT4 and FT3, which were always within range, dropped quite a bit. I refused to agree to any more dose reductions.

Adverse effects caused by suppressed TSH are allegedly increased risk of atrial fibrillation and/or osteoporosis. You can Google "suppressed TSH". This study didn't find any association between TSH and atrial fibrillation but there is an association between high FT4 and AF. press.endocrine.org/doi/abs...

You could have high reverse T3 (rT3) because FT4 and FT3 are both over range. NHS doesn't test reverse T3 so if you want it tested you will have to order a private thyroid test and arrange a phlebotomist to do a venous blood draw. If rT3 is high reducing dose will bring it down. Hyperthyroid patients always have high rT3. thyroiduk.org.uk/tuk/testin... Medichecks offer #ThyroidThursday discounts.

Why do you need to buy Levothyroxine?

NatureThroid and Erfa are in short supply so you may need to consider other brands. NatureThroid may remain in short supply until end of November.

[cmh0908w in reply to Clutter]

Hi clutter thanks for your reply and advice.

Yes it was 24 hours since I last took my medication when I had the blood test.

I had another blood test on Friday so I'll see what the results are from those. I was interested to hear about your suppressed TSH and the fact it wouldn't budge after 2 years with 3 dose reductions. I suspect I would have the same problem.

I was also thinking that I might have high reverse T3 and will order a kit from Medichecks. My levothyroxine ran out and there's no chance my GP will prescribe it for me now unless I half my current dose as suggested by the endocrinologist.

I have a good supply of Nature-throid (2 grains). I stocked up a couple of months ago. I'm not sure if I'm doing so well on it though maybe because I'm not taking the levothyroxine at the moment.

[Hidden in reply to Clutter]

Clutter,

In your opinion, if you leave at least 12 hours between taking meds and drawing blood (I actually leave 24 h), should you look at your FT3 levels on the day you go to the lab, or assume they were +/- 20% higher on the previous day and use that result to decide whether you are indeed overmedicated?

[Clutter in reply to Hidden]

Anna69,

If your FT3 is over range 24 hours after last dose then you are overmedicated.

[Hidden in reply to Clutter]

No, it's in range 24 h after last dose, but if I add 20% to that result, it means slightly hyper. What I meant was: which result should I care about; the one I get 24 h after taking NDT, or the one I get when I add 20% to that result (as I believe the latter is what FT3 levels looked like on the previous day)?

[Clutter in reply to Hidden]

Anna69,

If you feel well I wouldn't worry about being slightly overmedicated a few hours after taking NDT/T3. Unless dose is divided into 4-5 daily doses it is likely most of us taking NDT/T3 will be temporarily overmedicated.

tiredthyroid.com/blog/2015/...

[Hidden in reply to Clutter]

Thanks for another great post, Clutter

[Clutter]

cmh0908w,

B12 is very low. If you have the symptoms in b12deficiency.info/signs-an... go to healthunlocked.com/pasoc for advice as they are the experts on B12 deficiency.

[Framboise]

Hi, I've gone through similar and sympathise! After Dr Skinner died I self-medicated for a while, then found an endocrinologist who had a good reputation for helping, but after a while he decide that I'd never had a thyroid problem, didn't need any hormones and must at least cut down the dose because my suppressed TSH would cause a stroke, osteoporosis etc.. Nothing would convince him otherwise. So, to prove a point, I did cut down, actually became quite ill, hair began falling out, felt exhausted, hands got stiff and painful, felt light-headed etc. meanwhile my TSH remained suppressed, and yet none of this convinced him. He tried to send me to other consultants for all the symptoms that were reappearing and also wanted me to cut down still further.

Thankfully I changed to another endo I heard of through this forum, who was a breath of fresh air. He switched me from Thyroid-S to Nature-Throid, increased my dose to higher than it had originally been and also said that the TSH level is immaterial once you're taking thyroid hormones and that being suppressed is nothing to worry about. I had already read up on this and was anyway satisfied that Dr Skinner wouldn't have endangered us if a suppressed TSH might have caused problems.

Had I not found this new endo I would have gone back to self-treating, and if you're happy to do that, it's far better than reducing your dose and becoming ill. I can't understand now why I thought that any point was worth proving to the first endo!

[cmh0908w in reply to Framboise]

Thanks for your reply Framboise. Sorry to hear you became quite ill again after reducing your dose. I was considering reducing my dose as requested by the endo but I think the same thing will happen to me. I'm glad you've found a more sympathetic endo. Would you be able to PM me their details as I think I need to find an endo like Dr Skinner. I'm not overly happy with self medicating but if that's the only option I have to feel well then I will. I may reduce my dose slightly once I've found out the results of my blood test on Friday.

[Hidden]

My doctor, a so called Hertoghe doctor, told me that what you see on the lab sheet is just the hormone levels in the blood at a given point in time, not the hormone levels on cellular level which is what is really important...not that many doctors know that, of course

My Hertoghe doctor is fine with my suppressed TSH (<0.01) because all my hypo symptoms are gone (my FT4 levels are slightly above midrange and my FT3 levels look like yours), but I constantly have to fight my GP and OB-Gyn who both claim I'm hyperthyroid and need to go back on T4 only asap...it never gets easy, but I simply tell them that I am seeing a "specialist" who prescribed the drug Novothyral for me (it's a synthetic T3 + T4 drug, and I say I take that rather than NDT because I figured that they would find it easier to accept). I am not proud of lying, but sometimes it feels necessary...and I tell myself it's a white lie as my TSH would look the same even if I did take Novothyral...! What's important is to convey the message that I take T3, in addition to T4, and that suppresses my TSH, making it necessary to look at my FTs.

[Hidden in reply to Hidden]

This article actually gives very helpful information about how to calculate optimal FT3 levels...although I suspect that if they are close to the upper normal limit 24 h after taking T3, they were actually over range the previous day and therefore you should cut back slightly...it's not easy, as T3 has such a short half-life and most of us are told to wait 12-24 h between thyroid meds and labs. I assume most members do not take their meds before going to the lab...?

hypothyroidmom.com/the-thyr...

[cmh0908w in reply to Hidden]

Thanks very much anna69 for your reply and advice. Dr Skinner was never really interested in blood test results only how you felt. I've always had battles with my GP. It's been quite stressful at times. Whenever I reduce my dose at their request I always feel worse. I may have slightly higher hormone levels in my blood but is it getting into my cells? I think I need to look into this some more and order more blood tests.

[Hidden in reply to cmh0908w]

Actually, my Hertoghe doctor told me a few months ago that what shows up on lab sheets only shows what is in your blood on the day you go to the lab, but does not say anything about how much hormones you have on cellular level which is what really matters...my doctor also goes mainly by symptoms. I know what you mean: in the past, I have also adjusted my dose according to doctors' instructions, only to end up feeling worse...the problem is that few doctors reason like that...most of them only care about the TSH

[Healthanxietyhater]

Wow sorry to be random but you're from Bristol and go to a doctor a southmead too? What a small world