Overactive thyroid, graves - Part 1

Hi All, Dave hope they soon get you sorted im starting to feel out of sorts again. Heart palpitions, lightheaded, heartburn & aching etc etc thought i was doing ok but, as we know we will never be 100% again.Cheery aint i? lol How is everyone else? Elaine.

Evening All. Just been having a catch up as I am afraid I had taken my finger off the thyroid pulse for a wee while! Dave I hope you enjoy your holiday, I'm sure it will do you the world of good. How did hospital go? Elaine, am sorry to read that you're out of sorts. Do you think you are hyper again? I only ask because those symptoms you describe are [u:37f1de20b8]exactly[/u:37f1de20b8] what I have when I go 'over'. Then again I do believe many symptoms can be the same hyper or hypo. Are you still on 50 thyroxine? Can you have blood done again soon to find out where you are? Marigold - please don't worry about not gaining weight, you will, believe me you will. 2 years ago when diagnosed I was literally skin and bone, now I am so overweight and I blame that on carbimazole. I am a mega active outdoors type and have cut out all the crap from my diet but still cant lose it. Also, the purple blotches and swelling of the legs will disappear along with most of the aches and pains.

I am still dodging along on 5mg carbimazole one day then 10mg the next. Seems to be working as I feel pretty much ok. Have been away round the country showing my shetland ponies - Royal Highland Show, Great Yorkshire Show etc. and have been having a bit of success so that's kept me cheery. I don't go back to endo till October unless I feel I need to see him before then. I was thinking about arranging another blast of RAI but I think deep down I'm scared it wont work again which then only leaves surgery as an option and that scares me. Maybe I'll just keep going as I am?! This disease is just so tiring - mentally and physically.

Take care everyone.

Lotte.

Hello everyone. Elaine, I had really bad heartburn for months, practically living on Rennies, eating them like sweets. I read somewhere it could be a sign of an overactive thyroid, but as my thyroid tests kept coming back normal I didn't think thay could be the cause. However, when my bloods were raised and I started on Carbimazole the heartburn disappeared, and fingers crossed it hasn't come back. I'm sorry you're feeling out of sorts. I feel a bit irritable at the moment, could fight with a feather. I have an appointment with the endo next week so I'll see what he has to say.

Lotte. Still not gaining weight. Hubby has offered to lend me some braces to keep my trousers up. I'm on 100 mcg thyroxine and 40 mgms carbimazole. I don't have much appetite so that's not helping.

I might have to have surgery as my eyes were affected last time I had Graves, and RAI might make things worse. How many shetland ponies do you have? I'm pleased you're having some success at the shows.

Take care everyone

Marigold

had my appointment, they said im fine now, the results are normal and ill stay on 100mcg of levothyroxine. i was a little confussesed and asked what the result should be, she said between 10 and 20 for T4, they didnt check my T4 as my TSH was fine? i was 12 last time and they stiill put me up?????????????? theyve done more blood tests so ill see how they go, having another appointment in 4 months. this was the 4th consultant id seen in 6 appointments!!!!!!!!!!!!!!!!

Hi All, Dave they shouldnt really go by your tsh alone as its the t4 that needs to be correct as for seeing all those endos it s bloody ridiculous as, they all have different opinions on how to treat you. I think they just see that we are in \" normal range \" & thats it, what they dont realise & cant grasp is that we can still feel shit. Anyway have a great holiday it will do you good. Lotte & Marigold i do hope im not going hyper again though im feeling extremely hot am going through the menopause though. Hope you are both ok? Elaine.

Hi Dave

As you are on Levo you should be looking at getting your TSH to 1 or below and T4 at or near the top of the range so around 20 would be good.

You say something was 12 last time, was that TSH ot T4 ? if it was TSH that's way too high and if it was T4 that's too low.

You really need the printout from your tests so that you can keep check of things and you do need T4 and T3 done as they can be out of range even though TSH is in range.

My TSH has been 0.05 for ages, which is fine, but last tests showed my T4 was 27.2 so too high, had they gone by TSH alone then I would be left Hyper.

You need to insist on T3 and T4 being done especially if you are not feeling right.

Hi All, its me again. Don't know if my bloods are up at the moment but the anxiety and panic are back with a vengeance. Keep imagining I've got all sorts of dreadful things wrong with me and then panic even more. One day I'm ok and then suddenly so afraid again. Any one else got this and if so, any tips on how to deal with it ? Its so much worse at night. I feel such a fool I don't tell anyone how I feel so not getting any reassurance. This disease is a lonely old business. Hope you are all feeling much better soon. Bess.

Hi Bess. I'm sorry you're not feeling very well. My mood changes from day to day. Some days I feel fine, and others I'm so irritable I can't agree with myself. I think things always seem worse at night. I sometimes lie in bed imagining all sorts of things. You're not being a fool, it's part of the illness. One doctor gave me some good advice. He said if I started to feel anxious and to think about worrying things to try and distract myself. I think it's better to get up during the night if you're feeling anxious. Have a cup of tea and read for a while. It helps me.

I asked the endo about the purple blotches. He said it's pretibial myxoedema, but it's not confined to the shins, and you can even get it on your arms. He said it'll go away eventually. I'm not convinced that's what it is, but I suppose he knows best. My thyroxine has been reduced to 75 mcgs.

I hope you feel better soon. Hope everyone else is ok.

Take care,

Marigold.

Thankyou Marigold, its such a comfort hearing from others and knowing we are not alone with this. Interesting to hear about the purple blotches. Myxoedema ? I thought that was what rabbits got ! lol. Take care.

Bess, you could be right about the rabbits. I thought my teeth were getting longer. lol.

Take care,

Marigold

Hello. How is everyone doing? Guess everybody's away / been on holiday - it's all gone quiet! Hope everyone is as well as can be expected.

Hi Lotte, Hope all is going ok with you. I am not too bad, uncomfortably aware of heart beat at times and still rather anxious. Otherwise trying to pretend its not happenening ! Haven't had a blood test for almost 3 months and been put on repeat Carbimazole till June 2011. Am going to ask for another blood test soon, I have only had one normal set of results and would like it to be properly monitored. Hope Dave and Elaine and everyone had good holidays, take care all. Bess

Hi Bess. Yes, I am about to organise another blood test too. I haven't had one since end of May and I dont go back to Endo until 7th October but this last week or so my energy levels have gone down so much. I just want to sleep all the time and have no enthusiasm for anything. The warm weather doesn't help either. I am very bad tempered just now too - according to husband anyway! I wonder if I have gone 'under' on my extra 2.5 mg carbimazole per day! What dose are you on Bess? Heart palps are scary, I remember they really worried me. I think I might try a second dose of RAI - am getting fed up with all this now. It's over 2 years since diagnosis and now I appear to have arthritis in my fingers - super. You're right Bess, this is a lonely illness.

Marigold - have you put any weight on yet? Are you feeling ok? I have 7 shetland ponies & 1 horse and am supposed to be taking 3 of the ponies to a show this coming Saturday but you know what? I can't even summon up the energy for that.

Elaine & Dave - you guys doing ok at the moment?

Take care all. Lotte.

Hi Lotte. I'm having a blood test tomorrow. I'm on 40 mgms. of Carbimazole, and the Thyroxine was reduced to 75 mcgs a month ago as I was feeling irritable. Off to see the eye specialist next week to see if I can have RAI. If she says no then it'll be surgery.

Sorry to hear you have arthritis in your hands. I've had arthritis for a lot of years, mainly in my back. I haven't much energy either, everything seems such an effort. I'm struggling going up stairs, my legs seem to have no strength in them. No, I haven't put any weight on. I wish I could, as I'm far too thin. You'll have your hands full with your ponies and horse. I hope your ponies do well if you decide to go to the show.

Bess, sorry you're still feeling anxious. I lie in bed worrying about things, and not sleeping very well at all. I admit I feel loads better than I did a few months ago, but I just wish it would go away.

Take care everybody.

Marigold.

Hi Lotte and Marigold, Sorry you so tired Lotte, I have 2 dogs to exercise and wanted to get a 3rd but don't think it would be a good idea at the moment. It must be so much worse having ponies etc. to worry about, I hope you get your energy back soon. Would an iron and vitamin supplement help ? Floravital is a good one. I broke my toe last Christmas, about the same time as the thyroid flare up although I wasn't diagnosed at the time - now I can hardly walk on that toe and wonder if osteo arthritis has set in. Don't know if this and thyroid go together. Marigold, I hope you get better sleep soon. I was awake till 3.30 this morning and lie there wondering if I should have had a glass of wine before bed - perhaps best not to start that ! Take care all.