Think I've made a mistake!!

2 years ago I was diagnosed as hypothyroid by my gp with a low T4 and normal TSH and put on 25mg levo. After christmas 2014 I was put on 50mg levo as my T4 had drpped below range again. My doctor also tested other pituitary hormones which all came back normal. I had a private blu horizon blood test 6 weeks after starting new 50mg dose as I waned to know my T3 levels which my doctor could not order on the NHS and this showed T3 and T4 in range (4.1 and 14.4 respectively) but a suppressed TSH. Concerned with this result I went back to and showed results to gp. He suggested I try 25mg and 50mg on alternate days which I did and started to feel slow and tired and my dry skin and aching joints came back. I therefore went back to 50mg. I also asked to be referred to an endo which my doctor did.

I saw the endo last week who said with my history he would not have diagnosed hypothyroidism. I quizzed him why he would not have done so giving my symptoms and he replied by saying he was very suprised that levo had given me any relief and seemed to not even acknowledge my symptoms. I had brought along my nhs lab results from a blood test a week prior to my appointment showing T4 below range (11.1) and TSH normal (1.95). He said the discrepencies and low t4 results were probably due to assay sensitivity issues. He wants to test me at another lab which he prefers.

I am concerned I have made a terrible mistake going to see an endo and should have stuck with my gp. Can he take my levo off me? I am very worried.

If anyone knows of a good private endo in essex or london could you pm me?

Thank you.

19 Replies

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  • LR1000, I find it hard to believe that 2 assays done 2 years apart would both be wrong and problems with the lab wouldn't be detected. Endos do love their own pet labs, others simply can't be trusted to get it right ;)

    If your FT4 and FT3 are low in range when you are taking 50mcg I doubt the endo will recommend stopping it. If TSH is suppressed he might suggest reducing dose though.

    A suppressed TSH isn't anything to be worried about as long as FT3 is within range and 4.1 is quite low in most ranges.

    Email louise.warvill@thyroiduk.org.uk for a list of endos recommended by members.

  • Thank you for your reply. I will contact Louise. I am going for the test at my endo's preferred lab next week and will see what it yields. If I'm not happy with the outcome I will definitely be looking for a private endo! I have read lots of posts on this forum before I went to see the endo as know it could be a bit of a lost cause, however I don't think I was really prepared for such a dismissive attitude and was quite shocked and shaky when I came out the appointment! Thanks again.

  • Just make sure you have your bloods done at the earliest possible appointment to give the optimal results

  • It's very frustrating. I did get T3 from my endo but he told me I won't be able to have it for long and I know when I see him next month he is going to reduce everything because of my tsh even though I am feeling better. we are stuck between a rock and a hard place! I have bought a load of T3 and T4 online in preparation for his decision. Good luck with your new tests. Xx

  • Where did you buy it from x

  • GPs are independent clinicians and prescribers. Yours can make their own choice like any other. If you're getting relief via low dose levothyroxine, your go is well within their right to continue.

  • My GP this week declared himself 'baffled' as to how my TSH came back as undetectable while my ft4 was bottom of the range at 4.2 while my ft3 was out of range at 2.7. IMO and I stress I am no expert, it is possible your body struggles to convert T4 to T3 as explained in a recent article posted this week on the forum where up to 15% of thyroid patients struggle to convert. Now I have elevated BNP which is a marker for heart failure. What has been shown to be closely linked in some cases to heart damage? Yep, low T3. None of this has come to me from endos or GPs just my own research helped by this lovely forum.

  • It is very rare but you can have isolated TSH deficiency without all the other Pituitary hormones being affected. If they try to take you off meds or reduce them when your T4 and T3 are below or bottom of range I would ask for the TRH test to rule that out.

    Here's a link that might be helpful:- ncbi.nlm.nih.gov/pubmed/871...

  • When you get your bloods done get them as early as possible and don' take that days meds til after the test.

  • Thanks for all your advise. I will get my blood test done Wednesday as it has to be 9am for the cortisol test and I can't get anyone to help drop my children at school while I have the test till then. I will be sure to ask for the TRH test if my FT4 comes back low again. If it doesn't I will probably go ahead and get it done privately.

  • Be careful if you are having a cortisol test, any slight stress that morning (getting kids to school on time for one thing!) can raise your cortisol levels then you will come back normal. It's a very sensitive test and not very accurate.

  • First regarding doctor referral in UK, Ask the administrator of this site.

    SECOND, MORE IMPT- hypothyrodism made ME feel the same things you are.

    Personally I was on levothyroxine which addresses t4. I switched to ARmour which is the natural desiccated formula from pig because I was missing t1, t2 and t3. I felt fantastic. Normally, unless you complain in USA there won't be a change from Levothyroxine and they just mess with your system. When I have dry skin, etc now its from a yeast infection common with menopause. Hope this helps you.

  • I think others have valid points as well. Be sure to check thoroughly with another opinion. This is one area its crucial to get correct

  • Hi LR1000

    A few years ago I had strange experience with NHS lab.

    My results came back that I was OK and not hypo. Until one day they lost my blood,another time they said they broke it..... So I was fed up and used a private lab. And surprise, surprise I was completely hypo, no wonder I was feeling very ill. Since then, it took a while but now I'm feeling very good.

    Maybe a good idea to try a different lab.

    Wish you all the best.

  • You give no ranges to your results, which makes it difficult to know where the results sit. A suppressed TSH isn't necessarily a bad thing. Try and find out what this Endo's specialism actually is. Probably it is diabetes.

  • LR1000

    Maybe I have read this wrong but, TSH is NOT suppressed at 1.95 :-)

  • Barb, no one has suggested 1.95 is suppressed. LR is worried the endo might take her off Levothyroxine when she tests at the endo's lab. I suggested if T4 and T3 are low and if TSH is suppressed endo might adjust dose but isn't likely to stop it.

  • Ok Clutter, I expect I have read this wrong. The dreaded fog strikes again. I should stop reading and do something else which takes less concentration. I am absolutely shattered and cannot sleep tonight! Hmm, wonder where I've heard that before, lol. :-)

  • ((( Barb ))).

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