Advise please

Good afternoon all, I have been Hypothyroid for 13 years now and struggled through never feeling myself. I have always put it down to stress as I have a son with learning disability and complex health needs (has to live in nursing care) I also am a contract worker and have a stressful job when I feel able to work. Anyway I have noticed my intolerance to work has increased the last few years ie have to finish by 16,00 and I can only do 4 days. I am also needing more and more weeks/ months off in between to recover. Mid June I noticed that I was not recovering from a stressful situation at work, my concentration and memory deteriorated and the low level chronic depression I seem to always suffer got worse along with fatigue, pain in legs and other symptoms. I lost my contract. I had the blood test results end of june and levothyroxine was increased from 50mcg to 75mcg. (I didn't know the results)

I have just been back to see another GP and after all your helpful info asked for a print out of results.

T4 is 18.3pmol/L 8.00-21.00pmol/L

TSH is 0.01mu/L 0.40-4.50mu/L it also said on print out -suggests over replacement target for T4 treatment is TSH within reference range.

although the other GP was requesting I come in to see them this one said that I shouldn't really need a change as TSH levels are just out side normal. I told her I could barely get off the sofa I am so fatigued and I am crying all the time. GP has increased my dose to 100mcg to see if that makes me feel any better and is sending me for blood tests for chronic fatigue syndrome.

Any advise I would be grateful as I have realised just what I have been putting up with. Over the last few years have become totally isolated as I haven't had the energy to have any social relationships.

thank you

6 Replies

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  • First of all, really sorry to hear you're so ill.

    Someone with more experience than me will be able to give you better advice, but have you had your free T3 tested, and also vitamin/mineral levels (esp. B12, vit D, iron, folate)? If not, I think it's important you get these tests done to get a better picture of what's going on.

    All the best,

    A

  • Thank you for your replies, however just realised that the GP's secretary has give me a print out of someone else's results, that's data protection for you lol . So I will try again if you don't mind? Results are

    T4 level 17.3pmol/L

    TSH level 5.91 mu/L so just outside normal range of 0.4-4.5 .

    unfortunately most of the history is missing for some reason. I asked about the above tests but never got anywhere other than testing for chronic fatigue syndrome as GP thinks I have to many symptoms for it to be my Thyroid. Tests she is doing are THYR and auto antibodies, ferritin, CK, coeliac screen, glucose, and reactive protein. looking back at same time last year my T4 level was the same at 17.3 however my TSH level was 8.76. I don't know if just my TSH level changing will causes such drastic change in my physical and mental wellbeing?

    cheers x

  • Hi, I'm so sorry that you are having such a hard time.

    The dreaded CFS diagnosis rears its head yet again. I truly believe there is no such condition. It is a catch-all umbrella term used when the doctor has run out of ideas about someone who has depression, fatigue, pain and a myriad of other symptoms. I would be VERY interested as to which test she uses to check for it, as there is actually no such test. There are plenty of tests she could be doing for vitamin/mineral deficiencies, low nagalase and methylation problems however, and I'd really like to know which tests she's chosen to do.

    My daughter was labelled with ME/CFS for years and was offered psychiatric counselling, anti-depressants, CBT and measured exercise, all of which have no proven benefits because the root of the problem MUST be found before any treatment is offered. She did eventually agree to a psychiatric assessment at which the psychiatrist was furious that she had been sent to him as there was clearly no psychiatric problem.

    Can I suggest for starters that you check out this page on the main TUK website and ask for ALL of the tests mentioned in it to be carried out. It certainly looks as though your TSH level is too high: thyroiduk.org.uk/tuk/diagno... I would also ask for an intracellular magnesium test.

    It may be that you need an adjustment to your thyroid replacement and/or some vit/min supplements. If this doesn't work that is not the end of the road - we can think again.

    Jane x x

  • From those results i would say an increase in levo would do you the world of good the tsh indicates you are still undermedicated so i doubt it is chronic fatigue syndrome mine is 0.02 and even when it was 1 i didnt feel back to normal have you iron and b12 checked too as being deficient can give similar symptoms, hope this helps

  • I have hypothyroidism and have just been diagnosed with sarcoidosis plus, plus. I contacted SILA and had a very interesting conversation. I had ME/CFS in 1991/2. The lady said sarcoidosis is always being mis identified as ME so I could have actually been unwell all this time instead of feeling unwell. I think calling everything ME is lazy in the extreme but it is cheap. They just leave us to get over it... or not. Good luck :-) :-) Alison

  • Thank you for all your replies. I will persevere with this as I now have no option , even if I have a sit in, in the GP surgery lol.

    kerry

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