Not happy with blood results or endo :(

I haven't posted in about a year or so, so I hope you'll bear with me explaining it a bit of background. I'm now 40 and was diagnosed with an underactive thyroid when I was 21 - have been on levo all my life and never felt well.

About 5 years ago things took a turn for the worse in regards to fatigue and muscle pain and I started to investigate things in a bit more detail and saw an endo for the first time. He diagnosed Hashi's and also low Vit D and B12 so I've been on prescribed Vit D and B12 injections for a few years now (not that getting levels optimimum has impacted on symptoms).

I have some autoimmune stuff going on - confirmed lichen planus and possibly sjogren's syndrome - I don't have antibodies but rheumatologist thinks that I *may* have it due to my symptoms. I'm on hydroxychloroquine which I generally find helpful.

Anyway I've been seeing an endo in London who was recommended for the last couple of years and also my local hospital will no longer prescribe T3.

I was originally on 150mcg of levo and that was reduced about 3 years ago when T3 was first introduced so I have 100mcg of levo and 20mcg of T3. I've never felt introducing T3 has helped and neither endo would give me a higher dose due to supressed TSH when I'm on it. I've just had my latest bloodwork and I'm not really happy...........

Free T4 is 9.4 pmol/L (range 9-23)

Free T3 4.8 pmol/L (range 2.5-5.7

TSH 0.12 (range 0.3-2.0)

Basically my endo's advice is that he wants to REDUCE my T4 due to my below range TSH!!!!!!!!!! My TSH has only ever been low since I started T3 and I know T3 does supress TSH so it doesn't worry me. I think my T4 is barely in range as it is and I can't see what benefit it's going to be to cut it further. Surely it will only have a negative impact?

I've basically point blank refused to cut my T4 and the endo was pretty sharp/rude to me and he's said that they'll repeat the bloods in 2 months and if TSH is still supressed I'll have to cut my T4. He pretty much just said to me that I need to accept that this is as good as I'm ever going to feel and there's nothing he can do to improve things for me! I was stunned really :(

So I've now decided I'm done with that endo and I'm not planning to go back but I'm not sure what to do next? The endo I have been seeing was on the recommended lists etc and so was the one before that but I literally just feel like I'm getting nowhere with them.

I have thought about NDT but I've not found an endo who is happy to monitor me blood work wise while I'm on it and I'm just scared to try it if I'm honest, plus the financial implications of having to buy it in myself is an issue.

9 Replies

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  • T3 is known to suppress TSH. This is often the reason for prescribing it! It used to be prescribed explicitly for the purpose of suppressing TSH in cases of thyroid cancer, for example and in cases where TSH remained high despite good T4 and T3 levels. My GP actually said this to me. He told me that my TSH was suppressed but not to worry about it because that's what happens when you are taking t3. I would say you need a higher dose of thyroid hormones, not a lower one!

    It would be worth letting Thyroid UK know about these two doctors from the recommended list because it sounds like they are no longer worth recommending.

    I'm sorry you are not getting anywhere with your current doctors and I hope you find one who actually knows something sooner rather than later!

    Pink x

  • Your FT3 isn't optimal yet - people generally feel best if they are close to the top of the range. And see the discussion here on US/UK ranges to see that the range is pretty arbitrary anyway.

    It is a big step to self treat, either with T3 (more T3 in your case) or NDT. But on the other hand if you feel better you'll have more energy to argue the toss with your doctors. My TSH is zero after a long time on NDT (and TSH doesn't recover if I stop taking NDT!) but since I was close to suicidal before (levo doesn't work for me) I would rather battle with the doctors - or even just ignore them!

    I buy Thyroid-S from Thailand, and its dirt cheap. It costs far less than the stuff I put on my hair! But to be honest, if I had to travel there every couple of years to stock up, that is what I would do!

  • What a stupid endo. Not worthy of the title, is he?

    You just need a smudge more T3 - or even an extra 25mcg of levo might do the trick. TSH, as Pink has already said, means zilch in this situation.

    I don't use it myself, but Thai NDT is fairly cheap and many here seem to do just fine with it. Looks like you'd need between 2.5 and 3 grains a day.

    Alternatively, you could let him reduce your levo and up your T3 by sourcing some T3 privately (who says you have to tell him? When it comes to blood tests, 24-48hrs without T3 will usually drop FT3 enough for him not to blame your low TSH on the T3 he's oh-so-generously prescribed).

    How accommodating is your GP? Would he/she let you keep your 100/20 prescription going without the endo's say so?

  • Hi Jules,

    Sorry to hear that things are not going well for you,especially as I think that the first Endo you were seeing is possibly the one I am seeing at a local hospital under NHS and I am happy with the care that is being given to me by both him and his team,so would be unhappy to see him removed from the list. He is a very knowledgable man and certainly not stupid.However, as we are often saying, no one size fits all, so can understand your worries if you have multiple problems to manage which are not being solved.I am actually being monitored on Armour Thyroid by my Endo but have to buy it myself as he cannot prescribe it.However I do agree about the costs involved especially when the VAT gets charged by HMRC( see my other reply).

  • Hiya - yep my first endo is the one you see :) I didn't dislike him at all but he wouldn't increase my T3 dose or my levo dose so I felt it was the end of the road with him as I still feel I'm undermedicated :( That's why I went to London for a second opinion but 2 years on I'm now no further down the line really, hence the frustration :(

  • I know how you feel as they do seem to err on the side of caution.Maybe if at some stage you can try some NDT at least you would be able to be in control and as long as you start on a lower dose ( my Endo started me on 1 grain) you can gradually increase .I now take 1 1/2 grains and am OK. However,as said before,I am being monitored.Eventually you would hopefully find a level that suits you.

  • Hi Jules, I remember seeing your post initially I think about a year ago. I'd not been using TUK long myself.

    However going back to start of this post. You say you Things started taking turn for worse about 5 yrs ago, at age 35, having been on Levo since age 21 - I hope that's correct. Your ages mentioned started to make me think!(at 22 I went on The Pill - at 35 I was sterilised so I could stop taking it).

    Were you possibly on the Pill for the 14 years between your ages and then also stopped. Also can you remember why you had a blood test at 21 that shoŵed you had a thyroid problem, was it due to symptoms or something else? Also Is there a possibility it could be a hormone problem, and you are now in need of Oestrogen, and possibly because you are starting to go through the menopause? Or are other minerals/ vitamins are needed by your system. I certainly know that the Vitamin D3 I'm prescribed monthly helps me. Given that bodies and health often undergo changes in 7yr stages, some of the above may be part of the problem for you. C

    (Given your other comments and the replies) I'm not prepared to rubbish 2 recommended Endos, who I presume are Thyroid specialists, as opposed to Hepatic or Liver Specialists. Where I live, the Thyroid Consultant was different to the Endo one I saw. I saw both separately for different conditions. Have you ever had your Thyroid scanned? From your results yes the TSH is below bottom of range, I'm not good on commenting on results, symptoms are what I go on for myself - what I call my "gut instinct" on what works, what doesn't for me.

    You say you feel the T3 is doing you no good. However It's your Free T4 that's at lower end of range of your results- being 9.4 (range 9-23) - I hope one of the Admins will suggest on your Levo dosage. I'd be prepared to look at all options before saying or agreeing your Endos are rubbish! We are all didifferenr in terms of individual health. I wasnt diagnosed or start taking taking Levo Until I was 53, 16 years ago. Having been on 100mcg whole time, with exception of a couple of trials on different doses - one was my own and the other was doctors trial.

    What I have done though is clear out my 'endocrine system' with a natural product detox and now find I do well taking my 100mcg once every 2 days.

    It keeps my dry skin and hair loss in better check, though both still there. Which makes me think it's more a vitamin/mineral deficiency problem than specific Thyroid daily dosage, though all are linked to skin and hair follicle cell health! Have you had your Folate, Ferritin, Vit B12, VitD blood tested at same time as Thyroid testing?

    I think we sometimes forget that TSH stands for thyyroid 'supplementing' hormone!, to test the correct level of efficacy of Levothyroxine or whichever med is taken, if the Pituitary gland is not is not able to assist the Thyroid gland and insufficient levels of thyroxine are not produced naturally. Sorry if that's too much human biology for you to absorb.

    Also have you thought about buying a pill cutter from a chemist, then increase/decrease your dose by 25mcg to see If that helps, then tell your doctor and he can prescribe you some 25 or 75 mcg Levo tabs. Many on here also suggest as you probably know, going gluten free, but gluten doesn't appear to affect my digestive system.

    Hope I've given you some pause for thought before you abandon your Endo and TUK admins can also give you some suggestions.

  • Sorry for the slow reply - to answer your points - I had glandular fever when i was 21 and the thyroid result was picked up on that blood test. I wasn't aware I had any hypo symptoms and starting meds didn't have any impact as I didn't have any thyroid symptoms that I was aware of if that makes sense?

    I'm still on the pill so have never had a break from taking it - I'm on cerelle, a progesterone only pill and I do really well on it :) Don't think it's a hormone problem as I've had all my sex hormones checked by my gynaecologist and I've also been on prescription Vitamin D for about 3 years and have B12 injections - getting to good ranges on those hasn't helped any symptoms either unfortunately :(

    I was gluten free for 18 months without cheating once but gave it up last December as I just didn't feel it was giving me any improvement but making me very miserable :( Folate and Ferritin have been checked regularly and I always have high Ferritin which I know is a sign of inflammation but that doesn't seem relevant to any doctor I bring it up with :(

    I honestly literally feel that I have had every blood test known to man and looked it to everything that is humanely possible and nothing ever makes me feel any better :(

  • Interestingly I've been digging out all my blood tests over the last couple of years and I can see a steady decline in my T4 results even though my dose was the same in all that time (100mcg of levo and 20mcg of T3). In 2014 it was 16.3 in 2015 11.1 and the one from last month was 9.4 and the range is the same in all the tests at 9-23.

    My current endo's idea for the next step of my treatment is to reduce my T4 medication?!!!! I'm just not prepared to do that given my results and I can't understand why he would think that's a good plan?

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