Overactive Thyroid Graves Part 4

Hi Everyone!

I was diagnosed with hyperthyroidism in late June 2011 after going to see my GP with a high pulse rate (108) and badly swollen ankles. After diagnosis, I realised the night sweats, itchiness, lack of periods and generally feeling not well were down to that, and not the menopause, as I'd thought for the previous couple of months. It got worse after diagnosis though – everything seems to lag with this condition, doesn't it? - within the next couple of weeks I lost half a stone very suddenly and started shaking.

Anyway, my GP put me on 20mg of Carbimazole and when I went to see the endocrinologist at the hospital a couple of weeks later, he increased it to 40mg for 2 weeks, then told me to go back to 20mg until I saw him again in September. I'd had a blood test in early August which showed the levels had gone down (though still not normal by a long way) but by September they'd gone back up. So back up to 40mg I went for six weeks. In late October, another blood test showed the levels were in the normal range (yippee! And I felt well for the first time in months too. :-)) and I was put back on 20mg. It was at this point that my problem was confirmed as Graves Disease. Early December another blood test and still normal. (Cue general feeling of “I've beaten this!”)

Over Christmas I started feeling my heart miss beats, and when I took my pulse I realised it'd gone back up to over 90. So early January I was back to the GP - she gave me an ECG (no, of course it didn't do it in those thirty seconds or so, but it did skip when she took my pulse), and after consulting with the hospital put my dosage up to 30mg. I had another blood test last week and the levels have hardly improved since early January. So I'm back up to 40mg again. Oh, and over the last few weeks I've starting to get problems with my eyes – dryness, soreness, watering, and if I look up I feel like my left eye is going cross-eyed. I reported this to my GP who 'isn't concerned at the moment' as my eyesight isn't affected.

So – my levels seem to be under control if I take 40mg of Carbimazole, but it doesn't seem to work if I'm on less. I'm due an appointment at the hospital in mid March and my GP is saying we ought to be looking at alternatives to the Carbimazole. I don't like the sound of either the radioactive iodine or surgery, so I guess I'm wanting to ask you all if you think it's worth trying one more time with the Carbimazole, perhaps staying on the 40mg dose for longer and reducing more slowly, or if I'm better off just doing something more drastic straight away? And what would you say the pros and cons of the alternatives are?

Sorry to rabbit on for so long but I'm sick to death of not feeling well. My hair's gone thin, I've got an odd itchy rash on my leg that won't clear up and a sprained shoulder that just won't go away. My heart is still skipping beats, my eyes feel funny and I lose my temper far more easily than is rational. I think I'm just so run down my body can't cope with anything much at all.

Oh dear, I just read that back... sorry, I am cheerful most of the time!

Anyway, any advice will be gratefully received.

Hi Charlotte. Welcome to the forum. If you fancy a rabbit and a good moan you've come to the right place. We all do our share. lol.

Graves is a horrible illness, and although it might not feel like it at the moment you will get better. I was interested to see that you had swollen ankles as well as all the other symptoms associated with Graves. My ankles and legs were very swollen, I couldn't get my shoes on, climb the stairs or get in and out of the bath without help.It was caused by my heart rate being too fast, and I was put on Propranol to slow things down. Once my heart rate went down the swelling went.

I was put on 40 mgms. of Carbimazole and once my T4 level went down the endo added Thyroxine to the Carbimazole (block and replace). Some endos use this method, some don't. As this was a recurrence my endo said I needed a more permanent solution as once you've had a recurrence it's almost certain that it'll recur again. He also said he could only recommend staying on Carbimazole for eighteen months. I didn't fancy having surgery so I had RAI six months after the recurrence.It's no big deal, I can remember wondering what all the fuss was about.I had to sleep alone for about ten nights, and avoided contact with our little granddaughter for three weeks although I was told it wasn't necessary as it's only prolonged contact that's dangerous. I went shopping as normal. The advice you're given varies depending on where you live.I did have to go back on Carbimazole and Thyroxine for six months afterwards as my T4 shot up again, and it took some time to settle, but I got there in the end. I haven't regretted having the RAI, the best thing I've ever done. I've got my life back.

I've had problems with my eyes for a long time and had to take steroids to protect them when I had RAI. I find artificial tears a big help, and get them on prescription. My hair was thin too, but it's back to normal now. In fact my hairdresser says it's better than it's ever been. lol

Take care, and keep in touch.

Marigold.

morin everyone,couldnt get an app yesterday to see gp but managed to get one for 5-30 today ,Just as i put the phone down my endos secretary phoned me offering an app to see him at 2-30 today ,i just hope he can or will sort me out ,will post later ,hope you all are well ,thinking of you all

love sue xx

morin everyone,couldnt get an app yesterday to see gp but managed to get one for 5-30 today ,Just as i put the phone down my endos secretary phoned me offering an app to see him at 2-30 today ,i just hope he can or will sort me out ,will post later ,hope you all are well ,thinking of you all

love sue xx

I have recently been diagnosed with hyperthyroidism and thyroid eye disease (last week!) so am new to all this! It's good to know there are others out there who have gone through all this and survived- it is a horrible thing to have! I am having a CT scan next week and my GP has just put me on Carbimazole. You all seem to managed your conditions well, hopefully I will do so too once I'm sorted. I wanted to post to ask if you could give me some idea of what comes next, and in the near future? I don't know anyone who has had this condition so am feeling a bit isolated. Any advice you can offer would be gratefully received!

Many thanks

Hello Hare, welcome. I can't help with the thyroid eye condition as I haven't experienced this. I was prescribed Carbimazole for 18 months and this really helped. Propanolol is also often prescribed for rapid heart beat, don't know if you are having this. Its scary but does settle down. What happens next will depend on your scan and blood test results. Do you know what your T4, T3 and TSH are ? It helps to ask for them and write them down each time so that you can see how you are doing. There are others on here who have had RAI treatment who will be able to help you if you need this. Everyone on here is so supportive and we all have a good moan when we we need to ! I don't know how I would have coped without everyone on here. Sorry I can't help much but others will be able to help you more. Take care.

Sue, talk about buses ! Nothing then two appointments in one day. I hope you get on ok and they really listen to you. Be thinking of you.

Hope everyone ok today.

Bess xx

Hi Hare. Welcome to the forum. It is a horrible illness, but you will start to feel better now that you're on Casrbimazole. As Bess says what happens next will depend on your scan and blood test results. Do you have an appointment with an endocrinologist? It's a good idea to keep a record of your blood results.

I have had thyroid eye disease for many years. My eyes protrude a little, and they are often dry and sore. I find artificial tears help a lot. I saw a consultant at the thyroid eye clinic before I had RAI (radioactive iodine) to make sure it was safe to go ahead. If the eye disease is active, the RAI can make it worse. I also took steroids for two weeks before the RAI and two weeks after to protect my eyes. If my eyes start to protrude more I can have surgery to make them look better, but at the moment they don't look bad at all. It's good to know that there's treatment available if necessary.

I'm sure you'll be fine. Take care.

Marigold

xxxx

Hi all,

I hope you don't mind me joining in this group, as you all seem very supportive, & like Hare, I'm newly diagnosed with Graves disease, one month ago. i was given Propanolol, but had nasty reaction to it, & maybe that's a good thing, as I got an appointment with an Endo doctor straight away! Am on 20gms of Carbimazole daily, but suddenly since last week I've felt very distant & like everything's an effort. I'm thinking it's just my poor body getting used to not being hyper though. Does this rotten feeling go away??? AARGGH!, and I was so relieved when the doctor diagnosed me, as she was sure it was diabetes.

Jackie O

Hi Jackie. You're very welcome to join in. It might not feel like it at the moment, but you will feel better soon. It takes a while for the Carbimazole to work. Don't try to fight the way you feel. If you feel like you need to rest then rest. When do you see the endo again?

Keep a record of your blood results T4 and TSH then you'll know how you're doing.

Take care and keep in touch.

Marigold.

Hope everyone else is ok. How did you get on with the endo Sue?xxxx

Thanks Marigold,

I'll start a record of my T4 & TSH, then will probably need help understanding it ha ha, as brain's gone mushy! I see endo in 5 weeks, & will take your advice. I'm lucky because work is keeping me going, but eyes are going blurry and left eyelid doesn't shut, oh well

Hi Charlotte, hope you're feeling a little better? It seems you've had a poorly time. Sorry your doctor sounds a bit of a twat "& isn't concerned at the moment", can you ask for another doctor who is? am thinking of you.

Jackie O

Hi Everyone,

I hope you are all sitting down? I had my latest blood results back last week and I am ................................................... (wait for it!)................. NORMAL yes you read right NORMAL.

TSH = 3.39 and T4 = 19

First time I have been within range for about a year, very happy.

Doctor was really pleased, I mentioned that I had been feeling not right for a couple of weeks and she thinks it is was a virus and nothing to do with my thyroid, I am feeling better so I think she was right.

I did say though that the anxiety was getting quite bad again and I had lost a lot of my confidence. She wants me to keep a diary of when its really bad for the next couple of weeks and then go back and see her. She said there are tablets that might help but she is keen to get to the root of the problem and has suggested some councelling. She thinks because I have been ill for so long and I am finding it hard to adjust to being "normal" again. I'm up for anything that helps.

Sue how did you day of appointments go? I hope you got some answers.

Welcome Hare and Jackie, as Marigold and Bess have said this is a great forum everyone so helpful and supportive. It might not feel like it at the moment but it does get better, it just takes awhile.

We have just booked our summer holidays, we are off to Spain can't wait we have been to the resort twice before and its lovely. It's keeping me going with my diet which I have been struggling with a bit lately but now back on track, I have a bikini to get into.

Hope everyone else is the best they can be?

Take Care,

Kat xxxx

hi everyone ,just to update you on visit to endo and gp.Last blood results in January tsh 0.43 ft4 13.3 endo said these were perfect results ,he said all the symptoms i am having are not from my thyroid but could be side effects from my other medication ,he then asked me to hold my hands out he said they were only shaking slightly lol ,he does not want to put me on t3 as it could make my heart race and make me more aggitated ,i thought it couldnt be any worse than it is now ,lol,he also said part of my thyroid is still working hence the shaking hands ,anyway he sent me for a blood test requesting t3 and some other tests ,i am sure he thought it was all in my head.Next at my gps he told me he had been reading back on all my notes and noticed i hardly ever went to the surgery before i lost my husband and wondered if now i hadnt got him to care for was i focusing on my self more and causing myself some kind of anxiety bringing out all the aches and pains .I told him the only things i am suffering from are thyroid related Anyway he is weaning me off some of my tablets and wants to see me in a month .How do you get it through to them is all you want is to feel normal again.Endo told me to keep my appointment for the end of May so at least its only 12 weeks before i see him again

Hope everyone is well

thinking of you all

love sue xx

so sorry ,please dont think i am ignoring your posts ,i just didnt see them ,I will have to try and find a way of reading your posts before i post myself OMG as if i am not confused enough myself

I hope you all know what i mean ,its just not the same anymore

love sue xx

Thanks Bess and Marigold, for your advice, I will make sure I keep a record of my blood test results in future so I can see where I am. All your experiences have made me realise I'm not going mad, it's all part of the condition! My eyes are swollen on a morning but it goes down through te day, leaving me with tight, gritty sore eyes. I do prop myself up in bed which has helped, they're not as bad as they were.

I don't have an appointment to see an endo as my dr said he would refer me if the Carbimazole didn't work. I am awaiting an appointment for the eye clinic to have a look at my eyes - don't know what to expect there - how did it go for you Marigold?

Enough with the questions! I need to read through all your threads once I can focus properly then I'll have some answers!

Thanks again

Hare

X

Hi All,

I have been trying to get on here all day, but seems that they have had problems.

Welcome to Charlotte, Hare, and Jackie. This is a great forum with lots of help when you are not feeling great, with great tips and advice. .

Suzy, like you my levels are in what is called "normal" but like you I have not been feeling great, palpitations, a really bad upset stomach,unable to sleep and tremors. I thought that once I had finished work and didn't have that 2 hour journey to work, that I would be well on the road to recover. I see what the Endo has to say in March.

I hope that the upset stomach stops as we are due to go on holiday next week to Egypt, not a great place to feel unwell... Kate I hate to think what I will look like in my bikini next week, I really need to loose some weight but too late now and I normally loose weight when I am on my hols.

I hope that everyone else is OK and spring is here tomorrow.

Love Maria xx