Why are we never really 'well' again, once diagnosed?

Hi there, diagnosed 4 or 5 years ago with Graves, had two episodes of an overactive thyroid, which made me crazy both times, and went into remisssion a year after each episode (after Carbimizole starting on 30mg reducing to 5mg both times).

The only time I have ever felt really, properly well, is when I was pregnant in 2011. For that nine months I was better than I'd felt in years!

My question, I suppose, is, WHY, even when Dr's tell us our T3, T4, TSH etc are all "within normal range" and we have "responded well to treatment", WHY do we never feel properly well? I have a few 'up' days where energy is up, my body feels younger again (not too young as I am 43 lol) and my mood is positive.

So will I ever feel whole again?

11 Replies

  • I couldn't agree more! Up and down up and down! Why is it virtually impossible to get well again :0/


  • The fact that you felt well when pregnant may have something to do with it!

    Though a hard time for the body,it does need to focus -natures special request :)

    Perhap your hormones are out of kilter?

    I've seen recent report of UAT causing low hormones- so though you are the other end of the spectrum, thyroid wise, there could be a knock on effect.

    Also, Vit D is never far away from the checklist- do you feel better after some days of sunshine?

    Some autoimmune [reduced with higher D] issues seem equally to effect High as well as Low thyroid action.

    I'm always looking at Hypo trends- so can only say good for being more or less on target and staying positive-though still needing some fine tuning:)

    It may take some diggiing at!

  • Well I hope you find answers. If you do let me know please.

    May look into vit D and hormones - thanks!

  • Hi I have Graves and am hyper on carbimazole and yes bloods have been in range but I have good days and bad days( more the latter) and I am 43 too.

    I am sick of it being blamed on my age ( ie menopausal when I am not). I do not expect to ever feel carefree, fit or truly healthy ever again. I am a realist in case you havent noticed. My endo has called me negative but then she is older than me and not ill.

  • Hi greenginger, I'm sorry you feel so crap, but I'm also a tad relieved it isn't just me!

    Alot of well-meaning (ha!) people have 'suggested' I shouldn't have had a baby so late in life ie 42 when I am always a little unwell.

    I do a good job with her, she's a fantastic little baby - so sunny and easy-going - that she makes my life happy. I lost three babies to miscarriage before her (I also have a 12 year old son) so she is a gift.

    As for this darned horrid disease, I expected to be 'cured' after my first episode, but was not.

    I have days where I feel really 'up' and so energetic (like the hyper buzz but wthout the hot sweats and irritability lol) and some days, especially lately, where I am drained.

    I try to exercise, as, don't know about you, but my weight isn't what it was. I used to be a perfect size 10 but now am hovering at 13 going on 14, I don't lose weight as easily as my friends and have to strictly watch what I eat. I feel achey some days too.

    I sort of feel as though I am always getting over the flu - that type of feeling?

  • Hi I had my first baby at 34 ish then 3 miscarriages then baby two at 38 and then baby 3 at 40. I got a lot of stick for having 3 kids so late in life mainly by so called family and friends not the actual doctors who were very good.

    I have a gym membership and love to swim but because of awful periods and poor health cannot always get. then if I overdo exercise I am rough for days after.

    Weight wise I also hover between 13 and 14 stone and was always around 10. I find it hard to lose weight and always watch what I eat. I do not smoke or drink at all and my diet is pretty good.

    Yes the getting over flu thing is a good description. I have been told by my endo that this is all nonsense as my bloods are in range and it must be because of the kids!! I still find sleeping difficult at night and have period problems, migraines and loadds of other minor illnesses. It is the poor quality of life that I find hard when I am still relatively young.

  • Have you tried eliminating ALL wheat based products?

    This could be a factor -and worth trying with no risk, so long as you replace fibre + protein etc.and maintain good vitamin intake.

    PS Not so much the Gluten as in Celiac- just WHEAT!

  • Hi there, no I haven't. Ashamed to say I don't know why wheat and Graves are incompatible?? Are they?

    I get a bit suspicious about people who say they have wheat allergies - isn't this a new-fangled thing? :-/

  • it's not so much Graves {I'm at the other end of the scale] but the human metabolism that suffers in time with wheat. So much is tied up with the immune system, based in the gut, and wheat is notorious for causing problems like IBS,low energy [wheat molecules mimics the thyroid hormones] that any relief is a good move to consider..

    Vit D supports immune health and can reduce antibody reactions to thyroid hormones even though it makes immune reactions stronger

    It's not an allergy thing, as such, but simply that wheat is not a friendly diet and if other metabolic issues are running then why not give wheat a holiday?

    Extra weight is not the problem with Hyper people, so that's one thing less to spur you on, I agree!

    Further, people are known under treatment to swing between the extremes -on occasion often ending up with both hyper and hypo conditions at various times, esp. if treatment not optimal- from what I've seen on here.

    It's the old adage- try it and see!

  • Actually weight gain is a major problem for quite a lot of hyper people especially when they are on medication. They often feel hungry all the time due to increased overall metabolism but this is not reflected in weight loss. ask around and you fill find that it is a very common problem which is often overlooked by the medical profession and misquoted by many.

  • I agree. I know a few people who have gained and maintained weight gain on GD.

    I used to be a size 10 - since Graves have a hard time staying at a size 12 and I eat healthily.

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