New to this (Hyperthyroidism)

[Richy1301]

Hi just been diagnosed with over active thyroid, have a scan this week seeing consultant following week but concerned as weight is dropping fast, on 30mg Carbimazole any advise ?

[PinkNinja]

Hi and welcome

Sorry to hear you have been diagnosed with hyperthyroidism. I'm afraid I don't know much about hyperthyroidism but there are quite a few members on here that do so hopefully one of them will reply soon. Meanwhile you may like to look at the main Thyroid UK website for information. Here is one of the pages on there. There are several others that you might find useful too. The menu is on the left hand side.

thyroiduk.org.uk/tuk/about_...

I am going to edit your title to add "hyperthyroidism" so that it will catch the attention of those that know more about this condition. I have also added a couple of tags for people who are searching for such posts to answer.

I hope you find the answers you are looking for. There are many knowledgeable people on here who had had similar experiences.

Take care

Carolyn x

[Fruitandnutcase]

Hi Richy

I discovered I was hyperactive in November last year. Usual hyper symptoms that had been onions for quite a while, the weight loss I put down to Weight Watchers although I had the feeling my leader was deeply suspicious. My GP rang to say My thyroid was very overactive and i had antibodies and left a prescription for 20 mcg Carbimazole, (along with instructions about it ) at reception so I started right away. I had more bloods taken three weeks later and got a letter from my endo doubling my Carbimazole. Then I eventually had my hospital appointment at the end of February. I saw the endo's side kick who said I had antibodies, I said 'what, like in Graves?' And he said 'Yes, Graves, that's what you've got' so Graves I have. The Carbimazole had made me under active by this point so he said to lay off the Carbimazole for a few days but to start the levothyroxine that day. I did all that but when I had my second endo visit I saw the endo herself who said I was still a bit under and upped my dose, I now take 40mcg Carbimazole and 75 mcg thyroxine.

I was in the fortunate position of being able to do very little, I cancelled the work that I had scheduled for January and although I kept ironing to the gym, I cut back on everything and took things really easy. I just refuse to push myself or be pushed and treat myself very kindly.

When I spoke to the endo she said that no matter how much you read in books or online nothing prepares you for how awful you can feel and that other people just have no idea how you feel. She was so right that I came floating out if the consultation room feeling so good to think that someone actually understood exactly how I felt.

My weight has pretty much stabilised now and I am no longer losing weight. My muscles are quite weak. Before I know what was wring I thought the reason I couldn't get up after kneeling to take photographs of fungi was that my back pack had too much in it. Now I realise it was because my thigh muscles had weakened because of the Graves. So my muscles much weaker than they used to be but apart from that and a couple of really weepy days I feel better in myself, the awful joint and muscle aches are improving and hopefully I will continue to improve although I am feeling cold again and my heard pounds a bit so I think I might need more levo one of these days. I've been told I will be on ' block and replace' for about two years.

Sorry this is all so long but hang on in there and use the forum, there are so many supportive, knowledgeable people who will help you.

Liz

[Richy1301 in reply to Fruitandnutcase]

Hi Liz

Thank you for this its nice to know i'm not alone, once i have seen consultant will post results here

Regards

Richard

[Fruitandnutcase in reply to Richy1301]

Good luck. I'll watch out to see how you get on. I found one of the hardest things was that people just didn't seem to appreciate just how ill you were feeling. In the beginning I was always saying to my husband ' You just don't know how bad I feel' and he would say yes, he did but I knew he had no idea because he would then suggest we go and do something that required energy like, invite all the neighbours in for supper before Christmas, or do things that involved me having to think too hard and make decisions.

Because you tend to look ok - or even in my case, better than normal - people just don't get it. I was like a little old lady ( well actually I pretty much am a little old lady) I used to go upstairs, my heart would pound and I could hardly breath so I would have to sit down to recover from the effort, I used to have to find somewhere to sit while my husband paid if we were in a shop.

That's why I came away from my endo walking on air - someone actually knew just how bad I had been feeling. Yay!

Be kind to yourself, rest and relax if you can, don't even bother to try to do the things you used to do unless you actually want to do them - and hopefully with that and your meds gradually you will feel better.

Liz

[Hidden in reply to Fruitandnutcase]

Exactly how I feel Liz and so much so I read this out to my boyfriend ! I have had people say that I actually look great & not ill. (Losing weight does that).

[duster]

Hi Richy

I was told 2 and a half years ago I had an overactive thyroid after many visits to the doc due to weight loss. I had thyroid eye disease too which I had ignored rather stupidly so I had Iv steroid treatment for 6 weeks. Now have everything under control and am on 20mg carbimozole and 50mg thyroxine. I started on 40mg carbimozole which made me very sick so was reduced. Once my levels were normal I came off all the meds but lasted only 3months, I have refused Rai as afraid it may upset my sight again.

My weight is now back to what it was and as long as I take the meds I'm fine, life is rosy again. It's along old job but you'll get there. Take care.

[Fruitandnutcase in reply to duster]

So glad to hear you saying your life is rosy again Duster - that's just what I am hoping for

Liz

[hotfeet]

hello

i was diagnosed with graves in feb 2012 although no antibodies test has ever been done

when i asked my endo about this he said they only do it in pregnancy?!

i was on 6 tablets of 5mg carbimazol initially as i d lost weight resting pulse was 130 and i was breathless and could nt stand up from bending stairs were also an issue

gradually this dose was reduced but unfortunately it had affected my white cell count and i was taken off of it and put on ptu

all symptoms disappeared and my meds reduced but sadly last blood test showed levels very high again so im back on ptu 50mg 2x daily

still a little breathless on climbing stairs and occasionally itchy

endo said take anti histamine! not exactly the response i wanted i d like to take less drugs not more!

i was concerned they were going to rush me for op or rai but endo said i can continue taking anti thyroid drugs in definitely

hope you feel better soon

there is light at the end of the tunnel

when my levels initially dropped i felt fine no symptoms at all

good luck

hotfeet

[sugarplumfairy]

Oh I feel for you. I was dx with graves in sep 09 and that was after years of the blatant symptoms but was told I was simply mad and imagining things (hard to imagine yourself bald but I did apparently lol)...Im now on PTU and Im stable and feeling almost normal, still crashing tiredness but watch your diet and dont smoke - i stopped and that has definitely helped. No booze either but then it tastes like poison now sadly (used to love a good pint) but eating really healthy foods, and being a bit saintly does make a difference. Sleep is important - Graves is covered by the disability discrimination act so your boss needs to make reasonable adjustments for you to do your job....working from home for a bit if poss etc...means you can nap in the day which helps massively too. Its a horrible thing to have but it is possible to get to a stage where you can manage life again. Good luck!! thinking of you.

[jolioliver]

I was diagnosed with Graves Disease in March 2013 so very new for me too. Propranolol 40mg three times daily as pulse was 170 with Carbimazole 40mg. Levels of fT3 were 11.5 times higher than normal and T4 3.5 times higher than normal. Had terrible myopathy in lower legs especially (couldnt get out of chair or up from haunches) and then went into heart failure as it was all a bit under pressure. Felt rubbish for about 4 weeks - worse than before meds but now, 8 weeks on feeling more like me. I am just so glad that despite the heart trouble, which can be treated I have not suffered with eye problems. I think you need to be positive and try and not let the disease rule your life if you can. I went back to work after a couple of weeks but really that was a bit soon but I wanted to normal - dont do the sick thing. I have a v good endochronologist who has given me a plan of where we aim to be in 18 months and I can live with that. I am sure it will be a rollercoaster but I think I am accepting of that and that I might not feel great all of the time and thats helping. I think lack of information makes things worse because you read everything and usually it reads as bad! So keep your chin up and good luck to all out there.