New Here - Graves Disease - Why does medication make me feel worse?

[MariaChandler]

Hi everyone, I'm new to this forum and hope some of you can help, as I don't seem to be getting anywhere with my doctor. I have been diagnosed with hyperthyroidism - Graves Disease - and have been on a block and replace regime for around a year. Before I knew I had Graves Disease and before the block and replace medication, I felt fine (other than heat intolerant) and lived a normal life. With the medication, although the hormone levels are pretty much now in the normal range, I feel much worse. I'm sluggish, tired, and lacking in energy and motivation all the time. It's increasingly hard to get up and do anything, and I do need to keep active as I'm the full time carer for my husband who has had a stroke. Has anyone out there experienced anything similar (ie, medically better but feeling much the worse for it), or has any advice or suggestions? I would really be grateful. Thank you, Maria

[MissZP]

Hi Maria,

First I'm sorry to hear about your health troubles and about your husband too, I hope he's recovering well.

After reading your post you could be describing me. I was only diagnosed with hyper in July and I'm still on carbimazole trying to get my levels down. I haven't seen an endo yet but I suspect it's Graves since I've got the thyroid eye disease.

I've been feel so tired and sluggish but I've been finding setting small goals stops me feeling so useless and frustrated that I can't get as much done as I'd like.

I used to be up until 10/11pm getting stuff done, ironing or whatever needed doing, I've got a 3 year old and 11 year old and a partner so always loads to do! Now I'm falling asleep on the sofa and finding it hard to find the motivation. The exact opposite to how I was feeling, I had loads of energy.

I'm trying to be kinder to myself and just doing the minimum, not everything has to be done right now!

I set out to do the ironing one night or some cleaning another day and trying not to push myself too much or it makes me feel worse.

Have you got anyone who to can confide in? People usually don't realise what others go through on a day to day basis and usually offer to help. My advice would be take any help that is offered. And just be kinder to yourself.

I hope things improve for you very soon.

Zoe

[MariaChandler in reply to MissZP]

Hi Zoe,

thanks so much for your reply and concern. I hope things get better for you too ... it sounds like you have your plate full with a 3 year old and 11 year old!

It does help to know that someone else is experiencing the same type of thing : it's odd though, as everything I've read and everything the consultant said indicated that when things returned to normal (in terms of TSH, T3 and T4, which is now nearly the case) things should feel better too. That's definitely not the case with me! Do you know if your readings are now in the normal range or if the medication you're on has possibly put you in the hypo range?

I'd also be interested to know if you had/were aware of any hyperthyroid symptoms before the diagnosis. Other than heat intolerance, I had none. So, although medically I've gone from bad to good, in terms of experience and feeling I've gone from good to bad.

I'll be seeing my consultant in a few weeks time, and at the moment I'm inclined to say I want to come off the medication and take my chances. Untreated hyperthyroidism may have its own risks, but if life is a struggle on a day to day basis prolonging it isn't much of a bonus.

Thank you for your advice and for being caring enough to message me. You sound a lovely and positive person.

All the best for your future, Maria

[MissZP in reply to MariaChandler]

Hi Maria,

Nice to hear back from you.

My mother had a couple of strokes back when I was about 11 and then again at about 13, and my younger brother and I were her main carers, I know it isn't easy. Hang in there.

I was only diagnosed as being hyper in July, so I'm very new to all this, I literally only just signed up to this forum when I saw your post!

When diagnosed my free T4 was 88, after two weeks 35 and it has stayed that's way since. Last blood test a couple of weeks ago showed a result of 38 so Dr increased carbimazole from 20mg daily to 30mg. I was feeling pretty bad before the increase so I can't say that was the cause. I'm still hyper at free T4 38 so it's not low levels making me feel like this. I'm thinking maybe it's the carbimazole? My dr hasn't discussed my other levels with me, only the free T4 so I haven't got much to go on. I'm waiting to get referred to an endo.

In answer to your question about signs and symptoms, I had them all! I just didn't realise what they all meant. I had the heat intolerance, sweating, tremors, breathlessness, palpitations everything. Also an upset tummy a lot of the time which is why I went to the dr. I was losing weight but food was moving through me pretty fast. I thought I had IBS.

In comparison to how I feel then I feel a lot worse now. I left it months before I went to dr because I just thought I was a bit stressed. I could live with the other annoying symptoms. I do agree with you about taking chances without the meds, I feel exactly the same. But from what I gather it can be pretty dangerous coming off them, I saw a post the other day about a lady who had a thyroid storm - it didn't sound pretty, and it's potentially life threatening. Hang in there and see your consultant.

Thank you for saying I sound positive, I'm not feeling it at the moment. Just found out I've got thyroid eye disease which I'm a bit paranoid about. But it helps being able to speak to lovely people like yourself who know what it's like living with this.

Hope you feel better soon.

Zoe

[Laquin]

Hi Maria,

I have suspected Graves and I'm on PTU as I'm trying to conceive but like you feeling a bit hypo and my numbers suggest the same. My Endocrinologist says he's aiming to keep me on the hyper side between 0.4-0.8. It seems to be such an individual thing the way you respond to having a certain TSH level; maybe you could ask to get your meds adapted to how you feel rather sticking to the guidelines?

When I was very hyper I felt really tired and found eating good fats like coconut oil, avacado and full fat yoghurt and staying hydrated helped with the burn out. On the advice of the forum I'm getting an iron panel, VitB12, Vit D, folate, CRP and ferritin tested tomorrow. I'm also going to see an Immunologist to see if that helps too. Hope you feel better soon. 🌺