Advice before I speak to my gp on Tuesday please

I had a tsh of 5.35 in August 2015 and thats when my fatigue became a big issue. By January 2016 it was 6.8 then by March 7.8 and May 9.28. I was put on 25mg of thyroxine. The tsh was 6 in July and September it was 7 so I increased to 50mg. My tsh had come down to 2.6 by November and ft4 which had usually been around 14 (12-22) was now almost 19. Great we thought so gp told me to stay on 50mg for 3 months. I felt well so I was happy to. My energy had picked up and less energy crashes and weakness.

In the last few weeks after a stressful December I started to feel ill again. My legs weakness returned daily, huge energy crashes after doing simple tasks like housework or 1 trip out to a small shop. I'd be in bed weak and fatigued. Then the chronic fatigue hit again. All the symptoms I had a year ago which crippled me for over 9 months. I had my thyroid checked last week and tsh has gone up to 5.7, ft4 17 and ft3 5. So it's gone up from.the tsh of 2.6 and ft4 was almost 19.

I'm speaking to my gp Tuesday about this and I'm worried incase he doesn't think I need an increase. I know he's increased me in the past when it's gone from 9 to 6 then back up to almost 8 but my worry is as it's 5.7 will he say it's still under the NHS 10. I'm sure he won't but incase he does how shall I handle that? All my symptoms are back. My friend thinks the stress I was under in December has just increased my tsh and caused my chronic fatigue and weakness but I know these are my hypo symptoms. The thing is when my tsh was 4.9 in 2013 I didn't feel ill, yet in August 2015 when it was 5.35 my chronic fatigue and weakness started to hit. In November last year when tsh came down to 2.6 I felt much better but I still had bad fatigue by 6pm and would need to stop for the day which is hard being a mum to 3 children but it was much better than it had been all year and no longer did I have energy crashes landing me in bed for days. Would I really still feel tired with a tsh of 2.6? My friend said 2.6 isn't high as hers is 2.8 and she is well. She also thinks a rise to 5.7 isn't that much but why are all my symptoms back?

I'm just worried my gp will agree with that logic of its unlikely I'm feeling ill with a tsh of 5.7. But last year my tsh was 6 and rose to 9.28 in 4 months. I was so poorly. At the time I was under a lot of stress as my son was being bullied and he was very unwell with depression because of it, but once that passed my tsh still kept rising and once it hit 9.28 my gp treated me as I was struggling to walk around and had become agoraphobic and anxious if I left the house due to how ill I felt. Surely if stress causes this condition there would be a heck of a lot of people with hypothyroidism. Lol!

Any advice appreciated. I've had b12, ferritin etc checked 2 months ago so don't next them re checking. Just noting that incase anyone mentions it.

Julie

12 Replies

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  • Read the stuff by Dr Toft, a well respected retired endocrinologist and former head of the Britsh Thyroid association... Show it your doctor and ask if he knows more than dr toft if the doc wonT help.

    Here is a link to dr toft, via dr myhills website.... drmyhill.co.uk/wiki/Thyroid...

    Xx

  • Great link. Thank you.

  • For goodness sake, do not tell him your friend's 'theory' about stress. That way, he can't agree with it, and you won't be putting ideas in his head! :)

  • Haha I won't 😄

  • ......"Would I really still feel tired with a tsh of 2.6? My friend said 2.6 isn't high as hers is 2.8 and she is well. She also thinks a rise to 5.7 isn't that much but why are all my symptoms back?".......

    What works for one person may not work for someone else. That is the whole problem with 'normal ranges' - WE ARE ALL DIFFERENT.

    I am new to this and have just been prescribed 75 mcg levo, my TSH in Dec was 6.58, but in Jan was 6.67 (private) and then 5.3 from GP. I have no energy etc etc etc which is why I have gone to my GP. I have taken advice on supplements and changed my diet to exclude grains to ensure I get the most from the levo.

    When I go back in 6 weeks for new tests, if my TSH drops but I still feel unwell, I will ask for an increase, and will continue to do so until I feel well. I will take with me Dr Toft's references to " restoring a state of euthyroid "- there are lots of references on the forum.

    The advice which has been given in the past on the forum comes from those with more knowledge and experience than most, if not all GPs. It's tough enough getting GPs to accept how ill many of us feel, so giving them 'ammunition' to deny your requests (i.e my friend thinks....) is not something to be recommended - keep it simple with just the facts on your symptoms.

    Wishing you well with your visit :)

  • Thank you.

    Good advice. I shall go armed.

  • Gosh, I definitely wouldn't even mention stress and if he does I think I'd deny it. You need to reduce your tsh.

    It would be worth starting to jot down daily in a diary or notebook a quick note about how you are feeling then show him how it relates to the amount of levo you are taking and your tsh.

    We're your B12, vitamin D, ferritin and folate all high within their ranges when you were tested? 'Fine, OK or within the range' might not be optimal for you.

  • Ferritin was 34, I'm on iron supplements. I can't take iron from gp so take liquid iron. It'd been low over ten years.

    B12 was almost 500. It had dropped from 1000 as I'd stopped supplementing.

    Folate fine and D was 70.

    I won't mention stress but would he consider that a reason for my tsh rising again?

  • checking ferritin etc is vital but what exactly were the results

    stress puts huge strain on the adrenals and all the vits and minerals

    TSH is not really a good measure of thyroid status but its used by NHS as a beating stick

  • Ferritin was 34, I'm on iron supplements. I can't take iron from gp so take liquid iron. It'd been low over ten years.

    B12 was almost 500. It had dropped from 1000 as I'd stopped supplementing.

    Folate fine and D was 70.

  • My TSH is 3 and I am far from fine, but my ft4 is rock bottom so TSH alone doesn't tell much how well one is feeling.

    Reason why you didn't feel ill at first was probably because your body had the ability to adapt at first and compensate the failing thyroid.

    You don't know your biological set point for feeling well. It could have been for example TSH 1 and ft4 18 and ft3 6.

    So 50 mcg could have been enough for a short moment to fulfil that need and you felt better.

    Thyroid wise I would talk less with your friend. I know it sounds harsh. But you are nowhere near healthy enough to just think oh it was stress. Of course stress has negative impact , but you had not reached the point yet where your levels had stabilised and all was under control. You have been ill for long time and it doesn't correct overnight.

    Be strict with your GP :)

  • Thank you Justina.

    I agree. I don't think 50mg was enough to keep the thyroid levels doen and my body needs more. It did help at first then I felt unwell again which did coincide with stress in December but I can't imagine it's the sole reason my thyroid is struggling again.

    I will and I shall update on this thread.

    Thank you.

    Julie

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