Why do I feel so bad?!!

I was diagnosed with Hashi's in October last year. Now up to 100mcg of levo. Saw doctor today. Latest bloods: My TSH has now dropped to 2.9 (from 17) range 0.4 to 4.5, and my T4 has gone up to 15.8 (from 12), range 11 to 22. Why then, when numbers look like they are going in the right direction, do I feel worse? Am sleeping 10 to 12 hours every day and wake up with awful ache/pain across my shoulders and very heavy arms. Drag myself around every day. No energy. Doctor says I'm fine so no need to increase dose. I feel bad. They won't test antibodies now as they say makes no difference to my treatment so don't know if these have increased. Anyone any ideas/suggestions? Thank you.

15 Replies

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  • Maybe time to go gluten free ?? thyroidrootcause.org thyroidlifestyle.com You may feel better when your TSH reduces even more - many do. How are your levels of B12 VitD Folates Ferritin Iron - they all need to be HIGH in their ranges for good conversion of T4 into the ACTIVE T3.

    If you have been poorly for many years - then I am afraid it will take time for you to feel an improvement. The body needs time to adjust and heal. Healing the gut is the most important thing with Hashimotos - or any other auto-immune illness.

    I have Hashimotos and Crohns - so have travelled the bumpy road !

  • Hi Marz! Thanks for your reply. I asked the doctor today re testing B12, ferririn, Vit D etc. She just said they would be able to tell from my other blood tests re my health! And she said all ok. Apart from liver? But she said that probably ok and due to the thyroid. But she said will test for Vit D in 2 months. At least that's one off the list I guess. It's weird tho cos was recently in Malaysia for three weeks and felt pretty good when I was there. All gone downhill since I've been back. I too also have another autoimmune disease, MS. Been lucky with it tho as 'benign'. Doesn't mean doesn't affect me but it could have been worse. Hmm. Yes. Gluten free. I did wonder but they tested me for Celiac and said no. Also ate loads of noodles in Malaysia! No ill effects.

  • There are some really stupid comments there made by your GP - you have just eaten loads of noodles and then end up in her surgery because you dont feel well and all is hunky dory?????? I agree with Marz re gluten and would push for a gastro referral.

    My doctor couldn't tell I was VitD deficient or iron deficient by my "other blood tests" so how come yours can - I think she is on a money saving mission and you have drawn the short straw. Try and see another GP next time and see if you have better luck.

    Moggie x

  • Hi Moggie. Thanks for your reply. I did think it was odd that she could tell my general health from non specific blood tests. I first presented in a hyper phase of hashi's and, cos of my age, they just tried to fob me off with anti depressants (?) and HRT, which I declined to take. In short, now I know what I have, it's v obvious to me that I have been swinging backwards and forwards between hyper and hypo for some years. Body has taken a bashing but is now firmly hypo. It's funny you say gastro referral as I don't really eat. Not gaining weight anymore ( put on nearlly 2 stone in 6 months whilst watching my diet!) thank God but not losing. Am off a lot of foods, can't face many things, and have this feeling of fullness/ distension in pelvic area. Also only had one period last year. Yet no peri menopausal symptoms? Doc just ignored me when I raised my concerns re this. Help!

  • I would so change my doctor - can you see anyone else at the surgery as the doctor you are seeing doesn't seem to want to do her job properly.

    You say that you are not eating but still feel full and when you mentioned this she just ignored you. This is not right and I think you know it isn't.

    If your GP wont help then maybe a trip to A&E will wake her up but I dont think I would trust her to do her job properly and I would seek another doctors opinion.

    Moggie x

  • I have told my dr and rheumatologist this fro the last few years -I m not eating and feel full after breakfast and ignored .ive been to A&E and get dismissed there just the same.

  • My endo told me that FBC was fine ergo I wasn't anaemic although very pale and ferritin, vitD, B12 & folate would be fine.

    3 months later I persuaded GP to test. Ferritin was high, VitD severely deficient <10, B12 low in range and folate also deficient.

    Change GP. She's compromising your health. I'm seeing the other half of the endo team and mean to request she's the only one I see from now on.

  • Am afraid the coeliac test in the UK is woefully inadequate. Do read the website I suggested and the book. You will see that your wellbeing is in your hands. Noodles may have been rice noodles - therefore not such a problem. I tested negative for Coeliac antibodies - but am far better being gluten free. Gluten molecules can penetrate the blood/brain barrier anc cause inflammation - that was enough to make me go gluten free !!

    B12 and the other tests I mentioned are not covered in a FBC - they are specifically requested and much needed for people with Auto-immune Thyroid illness. Something your Doc will not be aware of - so you will have to educate them !

    Check out Dr Tom O'Bryan and The Gluten Summit - recently took place as an audio on-line. There is a follow-up at the end of this month. Why not register and have a listen - you will be well informed.

    You mention MS and I have read that sufferers have VERY low VitD. VitD is more than a vitamin - it is a steroidal pre-hormone and involved in many aspects of body functions.

    vitamindcouncil.org

    b12deficiency.info/

    Looking at B12 deficiency you can see there are many neurological conditions as a result.

    Hope this is useful....

  • Sorry don't think the website links are working - apologies....

  • They are now! (I hope.) :-)

  • Rod you are a Dear - what would we do without you - thanks :-)

  • You really need your TSH around one and maybe even lower and your FT4 should be at the top of the range.

  • I would like your doctor to go to work and do a full day feeling like you do. They have absolutely no idea. To diagnose patients by TSH alone and dismiss clinical symptoms is awful.

  • my doctor only measured my TSH .I didnt know what T3 and T4 were,now I know I have a thyroid problem cos of hair loss and weight loss but still dr's don't want to give you any answers.i was told I ahd protein in my urine btu not that it could be a kidney problem and that hairloss is alopecia btu not why im losing hair.

  • I had alopecia too, it is another autoimmune condition but my hair has since grown back. Hair loss generally is quite common but usually comes back when on optimum medication.

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