Help please!!! Hypothyroid now not hypothyroid but subclinical thyroid dysfunction whaaaaat

So I have been to the doctors today, I saw a different doctor to my regular doctor. I was diagnosed by my regular gp as hypothyroid in Jan this year. Put on 100mg of levothyroxine. I haven't really noticed an improvement. But carried on. The last couple of weeks I have been suffering from bouts of tachycardia, dizziness and blurred vision. I went to my regular gp he tested my thyroid levels and I got told they were satisfactory and return if heart issue continued. Last night I had a really bad episode so went to a doctor today. He has basically said I am not hypothyroid but I have subclinical thyroid dysfunction and I have been given levothyroxine when I shouldn't have. He believes I have antibodies attacking my thyroid and is sending me for a blood test. He wants to ween off the thyroxine. He showed me my test results.

Originally my thyroid levels were 10 and tsh was between 3 - 4. Now on thyroxine my thyroid levels are around 16 but my tsh is practically at zero.

Does anybody have any advice for me?

The doctor has referred me to have a 24hr ECG monitor to check there is no underlying heart arrhythmia and has asked me to have blood tests to check my thyroid levels 6 weeks and then 3 months after coming off the levothyroxine.

The doctor I saw today is going to speak to my doctor, he didn't seem happy with him at all

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12 Replies

  • Pinklady78 Isn't it annoying when doctors can't agree on a diagnosis?

    I've not heard the term 'subclinical thyroid disfunction before so I googled it and this is what I found:

    "Subclinical thyroid dysfunction is defined as an abnormal serum thyroid-stimulating hormone level (reference range: 0.45 to 4.50 μU per mL) and free thyroxine and triiodothyronine levels within their reference ranges. The management of subclinical thyroid dysfunction is controversial. 15 Oct 2005"

    Which is from this website

    Your TSH was 3-4 and 'thyroid levels' (do you mean FT4?) of 10. You haven't quoted ranges but I'd say your TSH is not abnormal but within normal range and, depending on the range your FT4 could be under. That doesn't seem to fit with the definition given on that website.

    Now my surgery doesn't seem to have time to explain things and frequently just print something off, hand it to you to take home to read. If I put my slightly awkward head on, I'd be asking for a print out of any information I can take home to read about it :) (but that's me and how I feel about my surgery!)

    Did you get a print out of your results or write them down. Can you post them with reference ranges so that members can make suggestions.

    PS - it would seem that the Levo you've been on is doing the job it's supposed to do ie it's lowered your and increased your FT4 but you don't seem to have felt any benefit.

  • It's such a nightmare, my health spiralled downwards 5 years ago, I had pnemonia and had a chest infection for about 9 months, haven't been right since, doctors sending me this way and that way, I got diagnosed with coeliac disease a couple of years ago, had a slight pick up then went down hill again, doctor said I don't know what else to do. Then did some more bloods and said I had underactive thyroid. I had spinal surgery a couple of months ago, picked up a bit and then dipped again. Now the doctors can't agree. I googled it too and thought well that's not what my levels were. This doctor only showed me on the screen, to be honest I was that dumbfounded that he was telling my other doctor was wrong that I didn't ask for print outs. My results seem to have shown that my t4 is in normal range and my tsh has lowered whilst on Levo. Which had indicated it was working but now this doctor is saying that it's wrong I'm not hypothyroid but I may have antibodies attacking my thyroid which is stopping it from working properly. I'm just drained by the whole experience. I feel I have no life anymore and feel I have no proper care in place. I don't know whether to call my own doctor and speak to him about what the other doctor has said. I don't want to have heart troubles but then I don't want to feel ill from thyroid either. Whose opinion to take? Maybe I should see somebody private?

  • Pinklady78 I would suggest you ask your surgery for a print out of all your tests, you are legally entitled to them (Data Protection Act). They may make a small charge for printing but not all surgeries do.

    When you get your antibody test results back, make a new post with all the thyroid test results. If your antibodies are positive then you have autoimmune thyroiditis aka Hashimoto's disease. Hashi's isn't treated, it's the resulting hypothyroidism that is treated. As antibodies attack then symptoms, and test results, will fluctuate.

    As you have been diagnosed with coeliac disease, have you gone gluten free? If you have Hashimoto's then being scrupulously gluten free can help reduce the antibody attacks.

    See what your test results say before considering going private. Once you do that it can get expensive. When I went to a private thyroid specialist years ago my GP refused to have anything to do with my thyroid health so I had to pay for private tests and medication as well as consultations.

  • Thank you for the advice, spoke to a third doctor this morning who said both doctors were right, have now been referred to a specialist thank goodness, having antibody test on Thursday x

  • OK, well celiac disease and thyroid disease very often go together. It is right to check for antibodies against your thyroid, and if you have them, you have Hashimotos Disease. I suspect you will have them. If your TSH was around 3.5 and you had symptoms then many endocrinologists in the States would treat you, I felt terrible at that level and though theoretically it can be called sub clinical hypothyroidism, many on this forum will report having full blown symptoms at that kind of level. Your gp was right in my view to give a trial of levo. I am surprised your antibodies weren't checked though.

    It may be you need to reduce the dose, but I would be wary of agreeing to come off it, certainly if you turn out to have antibodies, and if your symptoms improved when on levo.

    Ask the receptionist for a print of all your past thyroid results and post here.

    Many cleverer people than I will comment soon.

  • Thank you for the advice, spoke to a third doctor this morning who said both doctors were right, have now been referred to a specialist thank goodness, having antibody test on Thursday x

  • dont know you history but if they gave you 100 to start off with rather than gradually building it up...that could be too could just need a lower dosage but you also could have adrenal fatigue that effects the thyroid too.....

  • Thank you for the advice, spoke to a third doctor this morning who said both doctors were right, have now been referred to a specialist thank goodness, having antibody test on Thursday x

  • If you are on levo, your TSH should be under 1 and is often suppressed (as yours is - some people are just very sensitive to levo) and free T4 should be in the top quarter of the range. You don't give ranges, so it is not possible to tell if yours is OK. You may have hashimotos disease which means that you'll get hyper "flares" as the antibodies destroy your thyroid and release a huge burst of hormone.

    I'd drop levo dose by 25mcg a day to see if you feel better and get your GP to test b12, ferritin, D3 and folate. If those aren't optimum (not just within range), you can't utilize the levo properly and can't tolerate necessary dose increases, and often you feel bad. If your Free t4 was only 10 you are definitely hypo and your GP is being stupid. I'd ask for a referral to an endo on the TUK list.

  • Thank you so much, I called the surgery again today as I wasn't happy with the conflicting doctors, I asked to be referred to an endo which this doctor has done, I have an antibody test next week so hopefully the result will be in before I see the endo, I really appreciate your advice thank you x

  • i would make sure you dr checks your iron ferritin your b12 and your vitamin d3 because all of those effect how you feel and even can effect how your meds work......and i felt TERRIBLE WHEN i was low in any one of those.......and it is very very common......its common to be low in all three....i am shocked i have to really keep a watch on those bec i have digestive issues...

  • I have digestive issues too, thank you for the advice, I am so glad I came on here, I was really starting to despair and thanks to the help and advice on here I feel I am actually getting somewhere and don't feel quite so lost xxx

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