Grave's Disease

[KurriKurri]

Does anyone else have this? I been having problems with my thyroid and feeling quite unwell for over a year now, it started out as underactive, but since Christmas time it has been getting progressively over active, last week I saw an endocrinologist who has put me on carbimazole.

I'll see him in six weeks to discuss treatment options.

Does anyone know how long before the carbimazole starts working, I still feel awful, I am dripping with sweat all the time which I hate and find embarrassing, finding it hard to sleep and feeling quite down atm.

Has anyone had related problems with their eyes? - Mine have started feeling quite sore - dry and scratchy (am seeing GP this week) does that sound like the start of eye damage?

has anyone had radio active iodine treatment? (this has been offered to me and I'm thinking it over) - did it work, were there any side effects, were you left with underactive thyroid?

I think I'd really just like to hear from someone else who has this, - I don't know anyone else with it, everyone I know with thyroid probs has underactive.

TIA

I know someone who had the radioactive iodine treatment for Graves. As I understand it they actually aim to leave the thyroid underactive as its easier to treat that with thyroxin than to deal with overactivity. AFAIK she's fine with this.

Hope someone with more direct experience shows up for you...

Thank you for answering Grimma, I'm glad your friend is fine now. You are right underactive is easier to treat, and having had both I'd choose it over oveactive.

bumping for evening folk.

Hi - firstly, my commiserations you poor thing! This stage really sucks - are you having weird dreams as well? Increased pulse rate? Craving sugar? It will get better - I promise!!

My husband has graves disease and has had it for about 5 years now. He is on another drug called Propylthiouracil (PTU for short) as he didn't get on very well with Carbimazole. It can cause moth ulcers which is a sign that it is affecting your red blood cell count I think(all from memory - don't quote me!!). Def mention it to your GP anyhow. Again from memory I think the drugs took about a week to start having a good effect!

He has been offered the radioactive iodine and also surgical removal of the thyroid but for now has opted to stay managing it with drugs instead. The reason we didn't go for radioactive iodine was that there is always a risk to fertility/sperm count and we were abouts to get married and start a family at the time. Our first baby has just turned one and we are planning on having a few more so for now radioactive iodine is out!

Surgical removal was a bit too scary for my needle phobic hubby - so that is where we are for now!!

Does your GP seem fairly clued up? Is he referring you to an Endocrinolgist?

Hope you start to feel better soon!

Thank you mellousol, I'm sorry your Dh has also got this, - it does suck, but glad that things are under control for him.

I saw the endocrinologist last week, and am seeing him again in six weeks, to see if the carbimazole is working. I'm on beta blockers for the increased heart rate, - and that has helped a bit, - don't feel quite so panicky now! I am eating like a horse, and yes craving sugar.

I'm way past the age of having children(my two are grown up) so I don't have to worry about fertility aspects,(although I think you are very wise to stay clear until you've completed your family). Part of me thinks it would be good to have a one off treatment which got rid of the problem (even if afterwards I had controlled underactive) - I'm worried with the drugs that if there are periods of adjusting doses I might feel as ill as I do now again, then have to mess about getting blood tests, trying a new dose etc etc.

I'd just finished two years of cancer treatment, when the thyroid probs started, so although I'm normally a pretty cheerful person, I sometimes have a burst of feeling hacked off and sorry for myself But it's encouraging to hear from others who have been through the feeling awful stage and come out the other side,

Good lord - it sounds like you are being put through the mill! Two years of cancer treatment followed by this is enough to send anyone a bit grumpy!

Hubby had resting heart rate of about 130 (when actually asleep!!!) and was waking in the night in a sweaty panic telling me that we would have to lift the floor to get the rats....... among other things!! He was a bit of a nightmare to live with for a wee while - and we were both very relieved when things starting calming down a bit! He was also falling asleep at about 6pm and exhausted all the time as well as tetchy and grumpy!

On a brighter note I will say that once he got his drugs sorted he has been fine now for the whole 5 ish years since diagnosis, and that is remaining on the medical treatment only, so there is hope!! He sees his Endocrinologist about twice a year to get his levels checked - is it THT they check, can't remember off top of head! Other than that he isn't taking anything else - he came off the beta blockers once his heart rate had returned to normal ranges.

I know that people have very good results with the iodine or surgical removal as then you are replacing the thyroxine rather than reducing what your body is producing. His Endo doc told him to think of it as taking a vitamin/supplement - although obviously we are not actually at that stage yet so not really relevant now!

I really hope all goes well when you see GP, and that he can help you sort out your eyes, make them a bit more comfortable!

Good luck! :)

Hi Kurri

Just wondered how you are holding up, are things beginning to sort themselves a bit now??

xx

Thanks Mellousol - I am feeling a bit better now, the carbimazole is just starting to work I think. - I'm much less sweaty (which can only be a good thing ) sleeping a bit better on some nights. And the GP thought my eyes were OK (just an allergic irritation, nothing major)

I'm seeing the endo again mid October, to have my blood tests done, discuss treatments etc.

I hope your DH is fine too. Thanks for being there for a chat when I was feeling low, - it really helped, and I'm feeling much better than I was a couple of weeks ago x

Hi there - sorry I didn't see this last week. I've got Grave's disease - was diagnosed 12 years ago. I ended up at the GP's when, after months of palpitations, sweating and my heart racing, I thought I'd better get it checked out . I was put on beta blockers (my pulse was around 200 resting!) and then carbimazole, but kept on being over active, so had two lots of radioactive iodine (first lot didn't work) and am now permanently underactive... The second lot of radioactive iodine left me feeling a bit sick for a while and I had a couple of weeks off work - fortunately at that time I didn't have any children, as I couldn't be near children/pregnant women for a couple of weeks or so.

I'm on thyroxine now and have been for 10 years or so and it's fine. To be really honest, I preferred being over active - lost tons of weight, whilst eating loads, and it was fab being that hyper But I know it's far better to be underactive and have it corrected with Thyroxine - and the upside is free prescriptions forever!

Got to go - teatime calls - but give me a shout if you want a chat.

HI, i have had Graves twice now and on and off sessions of HyperT several times. I was recently diagnoised with Graves again in March. I knew i was, i went to the doc and said i needed a BT as i was Hyper T again..he said you cant tell...i could cause i had all the symptoms and i mean all of them. Very rapid heart rate, shortness of breath, sweatting buckets, sore swollen eyelids, tremors in my hands and legs, blurred vission and not to mention my periods! I was told enough was enough as i was becomming to a point of it being dangerous. I had RAI treatemnt a 200mg capsule on 22nd Aug. I had to stay away from my family for a wk, my boss booted me out the office! I had a sore throat for a few days but felt otherwise ok to be honest. I still get temperature issues..either hot or cold! It takes at least 3+ wks to see how carbimazole is working as i was on them for years! Now i have just had a BT yesterday to see whats happened to my Thryoid now, if its gone down to normal levels or if i have now gone Hypothryoid (high risk of this now happening!). Being Hyper is far more dangerous than being Hypo..trust me i have spent years doing all the internet research, books etc. Its not nice being snappy, aggravated at silly things and a bitch when you dont mean to be. Like i say i was first Graves when my son was one, he is now 10 yrs old and i have just had the 2nd session of Graves with loads of Hyperthryoidism in between..im glad its sorted out now...i hope!

Dotty and Zara - thanks so much for telling me your experiences (Dotty I do apologise for not seeing you had replied earlier) it helps hearing how others have got on. I've decided to ask for the RI when I have my next appointment, I just want to get it sorted. I'm still feeling very sweaty (but my cancer drugs can have that effect a bit too), but I'm not feeling so down about things.

Sleeping not too good atm, but I'm on holiday next week, so hoping being able to relax and not have to get up early will help

Thanks again for you posts

I had Graves Disease over 25 years ago. Carbimazole wasn't really effective for me, so I had surgery to remove most of my thyroid (not sure whether radioactive Iodine was available as treatment back then), they left a bit behind and my levels returned completely to normal. Anyway the surgery was 100% successful for me - I get my thyroid levels checked every year and its always been normal and I have never needed to take thyroxine, or any other medication for it. Although I am now 47, I am expecting that at some time fairly soon I'll go hypo and will need to take it.

Ok guys so now my results are back i need some help..they said that the T4 was 9.5 (reference range of 7 - 16)..which is fine?! Yes?, then my TSH is low 0.13 (should be between 0.20 -5.5) ! This is telling me i am still Hyperthyroid right? But as the T4 has calmed down so have my symptoms is that right? I asked the receptionist if i need to see the doc and she said NO !!! I had RAI on 22nd Sept and was made to feel like a freak, had to send my son away for a week and kept away from everyone and now its not worked..i feel totally crap. I do have a follow-up appt with the Endocrinology specialist in a week or two so i guess she can confirm if im still Hyperthyroid and if i have to go through it all again. Maybe this is the reason why my periods have gone on for all of Sept !

Hi Zara - really sorry but I'm useless with things like this - it's good you've got your appointment soon - hopefully they'll be able to go over your results and fingers crossed you start to feel less crap very soon.