Latest bloods - why is there no improvement? :(

Latest bloods - why is there no improvement? :(

I just got my thyroid blood test results back after seeing my gp again (because I don’t feel any better on the thyroxine). I wanted the dose increased, but my bloods show up fine now - so why don’t I feel any better?! My gp is still convinced I have CFS but I can’t accept that! That means theres nothing I can do :( so sick of having 0 energy all the time!

I’m seeing an endocrinologist in a month’s time, but I doubt they’ll be able to do anything in a single appointment. Been waiting so long, I’m just so sick of this.

Just here for some suggestions. I’ve asked for some before but it all really confuses me - having hypothyroidism, pernicious anaemia and possible coeliac disease (undiagnosed) makes it all so overwhelming. So fed up.

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  • Your t4 is still lowish and there is room for a little more levo. You need to know what your t3 is. Low I suspect. Did you take your levo on the day of the blood draw? Are you taking it on an empty stomach (apologies if you've already been asked this dozens of times)?

    Are your b12 injections enough or just every few months? That might help. And what's the story w coeliac? You have symptoms or antibodies or - ?

  • My T3 hasn't been measured. I took Levo the night before (I take mine at night)- totally didn't think to skip it as I went straight from the doctors to my bloods). I know I should take it on an empty stomach but sometimes I don't. I'm always craving food, mainly junk, and sometimes end up munching on something before or after I've taken it. I just can't seem to take it in the mornings (don't wake up), or on an empty stomach (eat as soon as I crave or I feel like crap)

    I have an injection 3-monthly, and that's kept my levels in the lower end to middle of the "normal range".

    I've had symptoms of coeliac disease pretty much all my life but doctors just put it down to IBS when my bloods came back negative years and years ago. They didn't investigate further but it continued until I went totally gluten free when diagnosed as hypothyroid. Since then, symptoms have occurred after accidentally consuming gluten on a rare occasion. So gluten free means one less pain to worry about

  • Sure, the fatigue can be rotten for food cravings, I've been there. Ever try setting your alarm a couple of hours early, taking your levo and going back to sleep? Or middle of the night can work, depends on how easy/hard it is for you to drop off again.

    Ideally you need a coeliac dx. You may have to sack your gp and move on. They can say ibs but they need to eliminate anything worse.

    Your b12 is not frequent enough if your levels remain low. Would you self-inject?

    You can do a finger-stick tft incl t3. Look at the Medichecks and Blue Horizons websites. It's pretty affordable if you stick to the basics.

  • Thanks, yeah I have tried that but I'm so out of it when I wake up, that's IF I wake up. I struggle to wake up to alarms, I tend to turn them off in my sleep. So I put my alarm further away, but then just ignore it instead! And change the tone, I just wake up confused, turn it off, and sleep again. Not ideal as I'm often late to work because I just don't register.

    I thought about the coeliac test and stuff but that would mean returning to gluten and it's not worth it!

    I would gladly self inject but I don't know where I'd get the needle and vitamin, so I'm trying to remember to take vitamin B complex to compliment it, but I'm so forgetful all the time!

    Ooooh! I'll definitely look into those. Might be worth just to get answers! It's just exhausting fighting for answers with the docs and things take so long! Like I said, my gp thinks it's CFS now

  • If we take levo at bedtime we should miss this dose and take after test and take night dose as usual. This is a link:-

    thyroiduk.org.uk/tuk/testin...

    FT4 and FT3 are important particularly FT3 as T3 is the driving force of our metabolism. You can read in the first lik about FT4 and FT3

    thyroiduk.org.uk/tuk/testin...

    thyroiduk.org.uk/tuk/testin...

    This is another view of CFS:

    holtorfmed.com/chronic-fati...

  • I forgot and my doctor didn't advise me to miss the dose either :/

  • The doctor wouldn't know, I'm sure. I think it's only members of this forum.

  • One step forward, two steps back

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