Hypo or no?

I'm pretty much a lurker on this site, but I would be grateful for some contribution now.

Between December 2010 and November 2012 I was treated with liothyronine (T3) only, up to 30 mcg per day. When I first started taking it, the improvement in my symptoms was immediate, but over the next six months it sort of dropped off and after a year I started to have a horrible mixture of hypO and hypER symptoms that no-one could advise me about.

I stopped taking it last autumn, weaning myself off it over about six weeks and have been unmedicated since the middle of November.

Test results on 26 November 2012

TSH (0.35-6) 4.2

FT4 (9-26) 10.2

FT3 (2.8-7) 3.8

I saw an endo with these results and he told me that I was not hypo, I had never been hypo and they had been treating me 'by mistake' for the last two years! He proposed to check my results one more time and then discharge me.

Since then I have not been feeling too bad, but my sleep patterns are disturbed again, like they were before I started T3 and I am having terrible problems with carpal tunnel as well as other symptoms creeping back. My basal body temperature is still generally below 36 and often below 35.

Test results on 18 February 2013

TSH (0.35-6) 2.8

FT4 (9-26) 12

FT3 (2.8-7) 4

I know he's going to say I'm fine, but bearing in mind how I feel, I'm not convinced, I think those frees are way too low, but how do I argue this?

I'd appreciate anybody's input. Thanks in anticipation.

AN

4 Replies

oldestnewest
  • Well - what a shocking indictment of the system to treat you 'by mistake' for two years! You shouldn't be discharged if you have symptoms and no correct diagnosis.

    IF you haven't got hypothyroidism what did they base your diagnosis on in the first place?

    This may be of use:

    us.bestpractice.bmj.com/bes...

    Hopefully others with more experience will comment - I'm dumbfounded!

  • Your results were so close to the limits that you were, for all intents and purposes, hypothyroid. Just because you were in range doesn't mean that you were "right". Clearly your thyroid function is not right if you are having symptoms.

    I notice a marked difference in TSH between the two sets of results. Were they both taken at the same time of day? Time of day can make a difference and it's best to test first thing in the morning.

    IMHO, you are hypothyroid, but fairly mildly at the moment. I also think your thyroid function may be fluctuating. This may explain why you were well and then not so well. You may have become slightly hyper on your T3 if your thyroid function suddenly improved. Some hyper symptoms are similar to hypo symptoms.

    Have you ever had your thyroid antibodies checked? If not, make sure your endo does them next time. It may be that you have the autoimmune form of hypothyroidism called Hashimoto's disease. People with this form sometimes find that their thyroid function fluctuates and they have to alter their dose accordingly.

    I think you should insist on the antibody tests and on treatment if you are experiencing hypo symptoms. I'm sorry to hear that you have been treated so badly :(

    I hope you get the treatment and answers you need.

    Carolyn x

  • Thanks for your responses.

    Both tests were taken at exactly the same time of day, on the same day of the week!

    Yes, I have had my antibodies checked twice and they have been completely negative both times.

    AN

  • Hi I would say that you need treatment with T4 ( levo) and T3 ( split into 2 doses, 12 hours apart). T3 will lower your TSH, Good that the GP has at least tested properly. I, like a lot of people need my FT3 near the top of range and T4 top third when ion treatment.Bloods can vary day to day and of course, Lab to Lab. I expect you know not to take any thyroid meds before tests when on them. If you take Beta Blockers ,the same applies If you do not feel well ,you need treatment and the blood tests show this.

    Best wishes,

    Jackie

You may also like...