Does anyone have any ideas ?

Been reading the posts on here for a while and I'm now looking for some advice about my situation.

I stopped eaten gluten 2 years ago as I had IBS and severe back pain which relieved when stopping eating gluten. I also suffer from severe plaque Psoriasis which also eased with avoiding Gluten.

Moving on 6 months ago I visited my GP to address the severe fatigue and feeling unwell.

I was diagnosed hypothyroid with a TSH of 6.8 (0.5-5.0) and started on 25mcg of Levo. That made the fatigue worse so I asked to up the dose to 50mcg which returned me to where I started although I had less "brain fog" and felt less depressed. I also had benefit for my psoriasis (less itching).

My next blood test revealed my TSH was supressed and the GP refused to increase the dose. I was packed off to the local hospital endocrinologist. I was a bit naughty and increased my T4 dose to 75mcg unilaterally as I could feel the benefit with my skin. Basically I was suffering considerably less auto immune attacks.

Which brings me to the results of the endo blood tests as follows:

Free T3 9.6 pmol/l (3.80-6.00)

Free Thyroxine 42.0 pmol/l (8.40-19.10)

TSH <0.01 mIU/l (0.38-5.33)

and a diagnosis of autoimmune thyroiditis despite still not testing antibodies.

I have been directed to stop taking levo immediately and entirely which I'm refusing to do on the basis my symptoms are consistent and unchanged ( all the classic hypo symptoms) and that I have derived considerable benefit with regards to my skin. I have no hyper symptoms which I would expect considering how much over range I am.

I have checked vitamins as recommended here and they are all fine and within range.

Thyroid scan shows that thyroid gland has no abnormalities

Am I reading this right , am I going mad or do these readings and diagnosis make any sense to anyone ? Any thoughts gratefully received.

10 Replies

oldestnewest
  • If the NHS refuses to test your antibodies then do them privately using either Medichecks or Blue Horizon to confirm it either way. Links are on the main thyroid UK website.

    In regards to vitamins and minerals most posters on here don't look at within range we try and find the optimal levels for people. So for example with vitamin D a fine level is 50nmol/L by some labs however here we recommend getting your level up to 100nmol/L and not more than 150nmol/L.

    I'm only mentioning this because your FT3 is high and above range, and if your vitamins and iron levels aren't optimal then you may feel you need to keep it above range to feel OK.

  • Thanks for that Bluebug , the vitamin tests were a while ago but were all well up in range , but you have given me an idea to revisit , I supplement every day and I was surprised they were as good as they were at the time.

  • Now, this is interesting - and, no, you're not going mad!

    I suppose that your doctor only tested your TSH when he diagnosed you, didn't he? Which is a pity, because if he had also tested the Frees, he might have picked up an altogether different problem...

    Now, I'm not medically trained - but then, neither are doctors when it comes to hypo! Most of them just make it up as they go along. But, that aside, it seems to me that your problem is not so much a problem with the thyroid gland itself, but a difficulty to convert T4 to T3 in the tissues. Which would explain why you at first felt worse.

    The thyroid gland makes both T4 and, in lesser quantities, T3. If you cannot convert well, then you are relying on what your gland makes for your T3. And that would not be enough, hence the high TSH.

    Starting to take 25 mcg levo (T4), could have been enough to lower production by your gland, without providing you with any extra T3 to compensate.

    Then, you upped your dose to 75 mcg of T4, which you really don't need, because your own gland can make enough T4 on its own, hence the very high FT4 reading. But you can't convert it well, so, although your FT3 is way over range, comparatively, it's low.

    That may sound like double Dutch. lol But, the way we tell if someone is converting, is to compare the FT4 reading to the FT3 reading. If you convert well, the FT3 is always higher than the FT4 in their respective ranges. Your FT4 is much, much higher than your FT3, as you can see. Therefore, you convert very badly. So, what you want is not levo (T4), but T3.

    Well, that's my theory, anyway. How you would convince your endo if he hasn't already seen it for himself, I don't know. But, certainly, you do not need 75 mcg of T4, so he was half right in stopping that - but, only half right...

    Oh, and your nutrients. Do you have the actual numbers? Because just 'in range' isn't good enough. It's not the same as optimal. :)

  • Actually I can see the logic , apart from I now appear to have sufficient T3 to improve my health and by your logic , dropping T4 would drop T3 levels.

    Thanks for your thoughts , its given me ammunition.

    The Endo is clueless and I am about to drop a complaint about him as he has had a consultation with me (lies) and didn't notice I was male (I am apparently a very nice lady).

    I'm still clueless about how you diagnose autoimmune thyroiditis without testing for antibodies , if anyone can answer that I'd be very grateful , maybe he is psychic ?

  • Yes, you're right, now you do have enough T3 to improve your health, and it could well be that you're someone who needs their FT3 over-range to feel well, because they have some kind of hormone resistance.

    And, right again, dropping the T4 will cause your FT3 to drop. BUT you have an enormous amount of unconverted T4 hanging around in your blood, probably converting to rT3, and that's not good. And, it could be why you need your FT3 over-range, because the rT3 blocks the receptors, and only high amounts of FT3 will get rid of it.

    So, that's why I say, you need T3, not T4. Taking excess T4 just causes problems.

    And, if it's any consolation, people are always taking me for a man! lol

  • Thank you greygoose , I must say I'm amazed that this forum has taken me from confused and worried to feeling like I understand my problem for the first time. You are all absolute stars !! Only took you all 1 hour to provide more information and solutions than the NHS has done in 6 months.

    For the record I have no problem being mistaken for a woman , I only have a problem with being lied to by my Endo , fortunately he was stupid enough to put all of it in writing. I expect he will tie himself in knots trying to explain why he has lied through his teeth and then written it all down.

  • First lesson to learn is that endos are usually diabetes experts who think that thyroid is easy and they'll be able to muddle through. They know nothing about it! As I said above, for the most part, they make it up as they go along. They don't exactly lie, and they probably forget what they've said the instant they've said it.

    Expecting to get any sense out of an endo is like believing in Father Christmas, the Tooth Fairy and the Easter Bunny, all rolled into one. Endos really aren't thyroid specialists, as we're lead to believe. It's much better to find a doctor with another speciality who has an interest in thyroid, like Dr Peatfield. But, they are rare and difficult to find.

    The doctor that set me on the right road was an anti-aging doctor, who had a special interest in thyroid because he has Hashi's himself. But, even his knowledge was limited.

  • You are far too kind , me , not so much. I'm not so worried about the diagnosis , I am worried about the treatment received at the hands of this person. I have a fairly tough skin , but most people don't and would just take his word for it , not knowing any better.

    Thyroid treatment in the UK isn't going to improve if these people aren't made to explain their diagnosis. If I accept his recommendations I will be even less well than I am now. Not an acceptable outcome. Though how I am going to get appropriate treatment is the next problem.

  • Well, you know, we've all been through it. We all understand exactly what you're talking about. However, you cannot take these people to task. They are untouchable. It's very rare that a complaint about a doctor gets anyone anywhere. It just uses up your precious energy.

    So, what most of us do is take things into our own hands, and self-treat. We get our own private labs done, and buy our own thyroid hormone replacement of choice. That's how we manage to get better. If I'd followed my doctors, right from the beginning, I'd be dead by now - and that's no exaggeration. They would have killed me with their ignorance. I cannot tolerate T4 - not the synthetic, nor the stuff in NDT. I need to be on T3 only. But, the first endo I saw, told me there was no choice, levo was the only treatment that existed. I don't know if she was lying, or just ignorant. But, had I believed her - and taken her disastrous nutritional advice! - I would most certainly be dead. And, I think, a lot of people on here could tell much the same story. So, we self-treat! :)

  • well you know what the next question will be !

    If you have any suggestions , please PM me if you feel able. If not then thanks for your sage advice.

You may also like...