Graves Disease, any experience

[mkz10]

Anyone with experience of Graves Disease? Was diagnosed 13months ago and really struggling to get it under control. Endocrinologist wants me to destroy or remove my thyroid but I am very reluctant to do that, having read some online accounts that it just replaces one problem with a different one.

Currently taking 30mg Carbimazole and 20mg Inderal. Did try to reduce Carbimazole to 15 mg and I went crazy hyperthyroid again.

No, from what I've read, hypo isn't inevitable at all. And should be manageable if gp follows correct guidelines and listens to you.

doesn't the endo check for all the antibodies in first instance or is this just a hyper thing?

No, it's just a hyper thing. Hyper is always taken more seriously and referred to endo. Sub clinical hypothyroidism is a bugger though if guidelines are followed it should be ok. It seems pretty hard to get antibodies done, though imo / my knowledge is that with wavering Tsh (borderline) with antibodies and symptoms should result in treatment.

Her Tsh apparently wavers but pretty much within guidelines (though often above 2 which is needed for conception) but recently went nearer 4. She has symptoms though and is really struggling physically - which is being blamed on bipolar. Had lots of tests and hopefully will get somewhere though.

^^this is the situation that causes much heartache re hypothyroidism; if it ever comes to that with you I don't think it will be an issue at all / easily managed.

No, it's just a hyper thing. Hyper is always taken more seriously and referred to endo. Sub clinical hypothyroidism is a bugger though if guidelines are followed it should be ok. It seems pretty hard to get antibodies done, though imo / my knowledge is that with wavering Tsh (borderline) with antibodies and symptoms should result in treatment.

Her Tsh apparently wavers but pretty much within guidelines (though often above 2 which is needed for conception) but recently went nearer 4. She has symptoms though and is really struggling physically - which is being blamed on bipolar. Had lots of tests and hopefully will get somewhere though.

^^this is the situation that causes much heartache re hypothyroidism; if it ever comes to that with you I don't think it will be an issue at all / easily managed.

oh that sounds so frustrating, yet understandable, I would not be able to tell thyroid stuff from bipolar and was diagnosed about 15 yrs ago so lots of experience (except some weird physical symptoms like I started vomiting during runs, every 3 or 4 miles, and feeling like I've been punched in the quads whether I've exercised them or not)

I did read a worrying thing in that book you recommended that worsening of pre-existing psychiatric conditions can continue for years after thyrotoxicosis is over

endo and psych both say I will be given shed loads of thyroxine in the event of hypothyroidism after treatment so I hope they mean it!

yikes

Hmm I didn't see that bit in book, but haven't read all hyper stuff. It sounds like it's been more physical for you? The anxiety is part of it but should ease as you feel better - plus anyone dealing with difficult health stuff gets anxious.

I'm not sure how though too? Tbh it could be that in the past people haven't been properly treated (presuming if go onto thyroxine) I'm aware things have been better/ easier in the last 5 years re hypo stuff, I was first diagnosed 18 years ago.

well am v pleased that my levels are already 'virtually normal' which means was not imagining feeling better, but was under impression we would start reducing carbimazole right away? instead am to stay on same dose for next couple of months - does this risk causing under activity?

Sorry I'm not sure poppy, hope someone can answer soon. From a
Hypo pov things tend to take 2-3 months so may be similar?

My friends levels have increased a tiny amount - not enough to quite trigger treatment but enough to get them taking it seriously, especially regarding pregnancy, so that's good :)

yay glad friend's situation is improving

friend (who is a Dr) told me today our bodies lag several months behind thyroid levels so everything will take a while to catch up with it and get really back to normal - the only thing bothering me (apart from needing so much more food) is the madness of the fatigue

am just so pleased the carbimazole has started to work so well already :)

he said 4-6 months but that isn't too long at all

Poppy, I went hypo having been on 40mg for 4 months straight, I hated being hypo, the lethargy, depression, the frozen feet, the puffy swollen face, weight gain! When we started to reduce Carb, I went hyper again very quickly. Typically the meds take 6 weeks to begin to see the benefits, I was not a typical patient.

My blood levels this week show that my FT3 and FT4 are finally in range, higher end of normal, TSH still negligible. Endo has said I should stay on 30mg for another 2 weeks and then reduce to 25mg and 2weeks later have a blood test again. I think the first time I started reducing and went hyper again was because I tried to reduce too quickly.

I had asked my Endo to prescribe something for the mood swings, specifically the rages (I was terrifying my kids )and she refused, as she said I just needed to get my thyroid levels to a correct level and I would be back to myself again. I am so much better now on the psychological level, so she was right.

My relationship with my husband has suffered as a result of Graves disease, it was such a relief to get the diagnosis and to realise that the person I thought I had become was actually due to a physical illness. At one point before I was diagnosed and, when I now realise I was in the full throes of Thyrotoxicosis, my husband told me he couldn't live with me anymore, that I clearly hated him and he was only staying for the kids sake. We are still trying to rebuild the bridges from that awful period.

Good luck and keep me posted on how it is going.

So sorry to hear that mkz- my marriage has suffered too, though from my hypo state.

My experience is as your friend says poppy, I think it's why they often wait 3 months to test in hypo - apart from the half life of thyroxine, they need to know how you feel.

what a horrible time you've had mkz am so glad to hear things are stabilising

are you still thinking about whether to have RAI or surgery?

Sorry to hear of your troubles, mkz10. I have Graves' disease. In my case it started after I gave birth to my first daughter in 2007. It went into remission after about 9 months on gradually decreasing dose of carbimazole, then it came back after my second daughter was born in 2010. Then it took longer to go into remission, even though treatment had started earlier because I could recognise the symptoms. But that's been 4 years now and it hasn't come back.

I was also against RAI or surgery. My endocrinologist didn't push RAI too much the first time but the second time she did. I resisted though - I was sure that the immune changes during the post-partum period trigger my Graves'. Since I didn't plan on having any more children, I didn't see the need for more drastic measures than antithyroid meds whilst it settled. I hope I'll not be proved wrong yet.

Poppy, have ruled out RAI, I am not taking that option. If I really have to, I will have a thyroidectomy. Endocrinologist is saying that if my levels are not under control by September on a lower dose of Carb, I will need to have it removed. Fingers crossed I can get it under control.

FG, I too would prefer to keep it under control with meds. You are lucky to have gone into remission 2x and so quickly the first time.

I do feel lucky, but I also remember well what it was like to be where you are now; so much of what you describe was my experience too. It is scary not knowing when you will get better. I did a lot of research online and people seem to have such vastly differing experiences with the disease.

I'm not complacent either even though I've been well for a while - I know it can come back unexpectedly. I get twice yearly bloods at the GP and I still automatically check my resting pulse rate once a day; if it's a bit high I will worry and keep rechecking until it's back to normal.

Best of luck to you and Poppy and anyone else going through this.

how is everyone? feel like some thyroid chat after stupidly reducing my carbimazole I can't believe how quickly all the symptoms have come back

do I have to do this for a year or more or can I just have my thyroid removed and take my chances on thyroxine

Hi poppy, I think I've definitely been suffering from over replacement. It's horrid! Much worse than under active. And I had low ferritin. I'm starting to get some muscle back and feel stronger. I've been off work for 6 months with strange muscle things. Sertaline caused it all by complicating thyroid level but then it seemed ferritin was a big issue too. But thyroxine was wacked up when on sertraline too high. I definitely agree with your friend who said there can be delays of 3 months or more with thyroid stuff!

Sorry to hear you had a wobble. Have you called BTF for a chat?

No I haven't called them, I assumed the whole thing had gone away and then of course cut down/out the carbimazole for fear of hypothyroidism then the thigh ache and tiredness and waking in the night with my fists clenched all started up again very suddenly. Resting heart rate around 55 today though which is fantastic.

am sorry to hear it's still so difficult to get everything right, the muscle thing you describe sounds awful

Poppy, that is what I did, Dr. had told me to reduce by 5mg and I reduced by 10mg, I think I also forgot to take it on a few occasions and then I was back into full blown Hyper. I have been on this roller coaster since March 11th 2014, but finally feeling okay again just this past 3 or 4 weeks. Libido is slowly resurfacing, thankfully, I am beginning to feel normal

My kids tonight commented that I am getting 'fat', no holds barred on the comments about my big tummy and fat legs, Ugh, but that is a small price to pay for finally feeling almost like my old self. That being said, I still have dreadful palpitations every evening, end up knocking back the Inderal to try to control it.

Clarella, I absolutely detested being hypo too, much worse than being hyper, although as per Endocrinologist, much less serious than hyperthyroid.

Do you all suffer from joint aches ? the stabbing pain in my thigh and upper arm has resolved completely, but I have terrible joint pains, mainly on my right side, which is bizarre that is one sided.

I am a bit scared to jinx myself by saying I am feeling good !!!

it's great to hear you are feeling better mkz! don't know how to deal with weight gain but everyone seems to end up looking pretty healthy once it's all under control

my best friend is actually dying of cancer so I feel ridiculous for being so hysterical about my non fatal and very treatable condition sometimes but it just seems to have that effect on me