Am I being too impatient?

Dear all, I've been lurking here since diagnosis in September, soaking up information, and this is my first post... ;-)

Levels as follows:

19th September 2012

Free T4 - <1.0 (11-25). Started on 75mcg. Weight 111kg

TSH - 50.8 (0.27-4.200)

CK enzymes 1370 (<200)

26th October 2012

FreeT4 - 11 (11-25)

Serum TSH - 33.0 (0.270-4.200). Increased to 150mcg

CK enzymes 143 (<200)

19th November 2012

FreeT4 - 18 (11-25). Increased to 200mcg - weight 103 kg

Serum TSH - 13.0 (0.270-4.200)

2nd January 2013

Serum TSH - 0.2 (0.270-4.200). Results received today - TSH NORMAL.

FreeT4 not tested See doctor in 3 months' time

I still have hypo symptoms (fatigue, cold extremities, carpel tunnel, breathlessness, hoarse voice, rage (very sudden - I no longer have an 'irritated' state - I go straight from reasonably content to furious in one almighty leap), cramps, heel pain, swollen features etc etc) I felt marginally better for a fortnight after the November increase to 200mcg only for symptoms to return. Saw Endo on 11/12 who said he'd "maybe test cortisol once TSH in normal range, as previous test 'wasn't normal' ". He did not elaborate and asked me to return in 3 months.

Have had symptoms for years, treated for depression (given Citalopram), menopause (10 years HRT, hysterectomy in 2009), none of which helped. I was only diagnosed after ceasing smoking Jan 2012, after at least 6 thyroid blood tests which all returned 'normal' until my September test which suddenly showed me to be hypothyroid, 3 weeks after Endo told me that all tests were normal; that he'd be unable to help me and suggested I saw a neurologist...

I'm doing everything suggested here, Levo with water, taking iron, D3 and B12 supplements (prescribed by GP) all at least 4 hours away from Levo...

My question is - am I being a horribly impatient patient? I am so tired, I am sleeping 16-18 hours a day, waking unrefreshed. Going upstairs is horrible, standing up feels as though gravity has somehow increased tenfold. A shower takes a couple of days to recover. A trip to the supermarket renders me flat out on the sofa for the whole afternoon. I took early retirement in 2010 because I felt so ill and couldn't cope with travelling and long hours, but always intended to get a part-time job, but this has proved impossible.

Apologies for very long first post... But I now can't see the wood for the trees and can't imagine how I'm going to last 3 months before seeing anyone. Should I be going to see someone privately?

Grateful thanks to all for such an informative site...

Karen

4 Replies

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  • Hi Karen

    Thanks for listing all your results so clearly, that is very helpful.

    I think you need to know your free T4 and free T3. It is possible that your fT4 is high but not converting properly into fT3.

    It is also possible that you are slightly overmedicated as your TSH now is actually lower than the range (weird they didn't notice!)

    Very good idea to check cortisol, I'd do that. If possible also check other adrenal output such as DHEA.

    Then I'd suggest checking vitamins and minerals. Deficiencies can make you feel awful and thy can also prevent the thyroid meds form having the effect they should. I'd make sure you know your ferritin, vit D, iron, B12 and B9 as these are common deficiencies in thyroid patients.

    Good luck

    koala x

  • If you can afford private I would suggest.you do. ThyroidUK have a list of sympathetic doctors

    thyroiduk.org.uk/tuk/diagno...

    It does take quite a while, unfortunately, to begin to feel the benefit of medication and many do fine on levo alone. I, didn't do well on levo and eventuually went private but I was on Levo/T3 by then and still not perfect but much improved with the addition of T3.

    The problem is, as soon as your TSH is 'normal' the assumption is that you should be too unfortunately that isn't the case. They do not consider clinical symptoms at all. The question they should ask is 'how do you feel'.. You should be given enough thyroxine until you feel well and it is o.k. to have a suppressed TSH or even the addition of T3 to your T4 if it makes you feel better but many doctors would prescribe T3.

    I had a change of personality on levo but I think it is because you feel so unwell and wonder if you will ever get better. You do but you have to have the right medication which suits you and you should be dosed until symptoms go, unless of course the meds do not agree with you.

  • I agree with Shaws that the TSH being suppressed is OK in fact Dr Toft says 0.2 is a 'typical' result when the patient starts to feel better, but then he adds that some patients do not start to feel well until TSH is low to undetectable, This is alright so long as T3 is unequivocally normal. So it is necessary to test the T3 at that stage.

  • This just sounds like me Karen! I feel totally shattered. X

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