Help in understanding please

Hi

I have been bounced around regarding any diagnosis for some years and keep getting the same response of 'blood tests are normal' and 'just lose weight' [despite weight not being my only issue]

Today I looked through all my medical records and got a list of most the results on there [I had some carried out at a hospital that were not there] and I am just wondering if someone can help me make sense of them please?

August 2008 - TSH 3.5 Free T4 13.8 [no ref range]

April 2010 - TSH 2.3 Free T4 11.3 [no ref range] Notes saying borderline TSH and Low Free T4

May 2010 - Notes stating borderline thyroid but no follow up by GP

June 2010 - Notes stating possible small goitre

July 2010 - TRH test carried out [no other hospital notes for results]

September 2010 - TSH 2.1 Free T4 12.8

November 2013 - TSH 1.53 [0.38-5.5]

March 2016 - TSH 2.9 [0.27 - 4.2]

My November 2013 result seems odd to me but the GP said today that it's fine. They are really pushing for a diagnosis of PCOS despite all ultrasounds and blood tests coming back as normal and have referred me to an endocrinologist to confirm PCOS [seeing them next month]

I'm just not really sure what to think or what to do next

Many thanks in advance

6 Replies

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  • Hi Neon Fairy

    Im sorry you havent had any replies yet apart from mine!

    Im afraid i dont really know how to help you...sadly TSH on itself is not very revealing, we really need to see FT4 and if possible FT3 as well but going by TSH alone its hard to say what is going on also i cannot make sense of the results either.

    Have you had any other blood tests e.g. estrogen, progesterone? Just wondering as you mention PCOS? I am also wondering how the endocrinologist will diagnose PCOS if there is no evidence? What symptoms other than weight gain are you having at the moment?

  • No other FT4 tests were done and I have never had an FT3 test

    I had the following done before being referred to the endo which were all normal

    Serum follicle stimulating hormone level 6.8 iu/L

    Serum LH level 5.1 iu/L

    Serum sex hormone binding globulin level 42 nmol/L [32.4 - 128]

    Serum testosterone level 1 nmol/L [0.28 - 1.73]

    Haemoglobin A1c level - IFCC standardised 33 mmol/mol [23 - 41]

    The only thing that came back as an issue was:

    Serum total 25-hydroxy vitamin D level 31 nmol/L

    I was given InVita D3 25,000units/1ml oral solution to take twice weekly for twelve weeks. Treatment was stopped after 6 weeks as I became severely fatigued, my muscles ached and I gained a significant amount of weight

    Symptoms currently:

    Excessive tiredness

    Cold hands and feet <suspected Raynauds not confirmed> and pins and needles/numbness especially at night

    Insomnia

    Dizzy spells / migraines / nausea

    Constantly cold

    Fine hair that falls out easily <my friend says I have doll hair>

    Flaky/peeling nails

    Restless legs at night

    No periods due to contraceptive injection <prior were heavy, painful and irregular>

    Anxiety

    Mood changes for no reason

    Back and leg pain / nerve compression

    Trouble focusing

    Losing muscle when exercising not fat <have a personal trainer so am doing the right type of exercises so this should not happen>

    Palpations

    At this point I'm ready to give up because my Dr has told me it's just all my fault

  • Hi Neon Fairy

    You certainly have some low thyroid symptoms but as you probably are aware quite a lot of the symptoms can be due to other problems too, you mentioned Vit D which was low, its a pity you had trouble with the VitD injection as that can cause a lot of symptoms similar to low thyroid but hopefully you have managed to get out and about in the sunshine? What about the pins and needles? Have you had your B12 looked at? Its just a thought as that can cause pins and needles. Would you say you feel better since having the contraception injection or did you feel better before apart from the heavy periods? When i was having heavy periods a long time ago i became anaemic, have you had tests for iron and ferritin recently? You also mention insomnia which can be caused by many things such as cortisol, progesterone and i also have been suffering with insomnia and i think i know whats going on with me...its usually prior to a monthly cycle and is inbearable, i really dont know how i make it through the next day but i have to i guess! Plus the low moods, bloating etc but my doc wont test my progesterone/estrogen levels as she wants to get the thyroid sorted for the moment. I am not in menopause but i think as im in my 40's that levels of estrogen/progesterone are now in decline which might be giving me lots of symptoms.

    I think your doctor is wrong to suggest its your fault, your symptoms are very real. How can it be your fault!

    Im not sure if any of what i have written is of any use to you but i do hope that you can work out what is wrong and if your doctor is making you feel that it is your fault then i think you need to change doctors to someone who is willing to work with you to figure it out.

  • I've tried changing Dr's but they all just want to diagnose on tests

    I wish I could go out in the sun but it completely wipes me out <makes sense why a supplement would do the same>

    I have the contraceptive injection due to the issues around my periods and have been for over ten years so I have nothing to really compare it to whether I feel better or worse. I am worse, but it wasn't specific to having the injection

    The last time I had a B12 and ferratin check was in 2013 and it was normal around 400 and 73 respectively

    When I moved Drs last year they concluded I wasn't anaemic but suggested I try not eating gluten. I would say that actually made me worse if anything, definitely didn't improve things

  • Oh dear! Why does the sun wipe you out? Curious to know...

  • I'd love to know the answer too

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