over active graves part 2

Thankyou all for being here ,knowing and understanding what each and every one of is going through takes some of the worries away.

I went for my lung funtion test on thursday (will have to wait for the results) and while i was there i called in the eye clinic to see if anyone could look at my left eye that i once had Iritus in ,i started getting bright flashes in the corner of my eye and lots of floaters ,but not the the painful explosion like a firework going off in my eye like when it was Iritus.I also wanted to know if it was safe for me to have RAI with this eye problem. i saw a doctor at 7-00 pm as an emergancy but now have to go back wednesday as i have to have eye drops in which blow the pupil up so he can see better at the back of my eye he said i wouldnt be able to drive for 4 hrs so one of my girls will take me ,When i first had Iritus the dr said it was usually associated with R/athritus and over the years i have had pain roud the brow and eye socket also the jaw so i am hoping he will look into for me as for the last few years i cant walk far as my hips and back ache something terrible .I never thought that after losing my husband i would start with all these illnesses i feel like a moaning hypercondriac ,hardly ever visting the dr .

Marigold if i ring christies up where i am having the RAI would they have my instructions for my meds or should i phone endo secratary,who wasnt much help once when i rang her

sorry for the long letter take care all of you ,and i hope this reads alrightas its it me ages to remember everything :oops:

sue xx

Hello everyone I am sorry that some of you are still not right but it has been great to see that there is light at the end of the tunnel.

This is my first post so here goes......Can anyone relate to this, I am not having a great time just now feeling weird, hot all the time, can't sleep, a bit shaky, high blood pressure and nose bleeds. GP sent me for a scan and blood tests which confirmed Graves and I saw an endo this week. My T3 is 34 and T4 off the scale, TSH is 0.001.

He has put me on medication which he claims will level me off in six weeks when he wants to do a total thyroidectomy or RAI, he has given me some documentation to help me decide which I prefer but I can't concentrate and am scared stiff let alone come to such a big decision, either way I will have to take medication forever. It has come as a bit of a shock as I had no idea that it was so bad. Not allowed to work, excercise or drink either so no chance of taking my mind off it. What do you think?

Thanks a lot

Jane

hi all

:oops: forgot to say ,how long am i likely to wait for my app after seeing him on the 18th jan ,my lung function app came through but not heard from cardiolagist or christies ,the next question is do any of you suffer with breathlessness like me ,my endo said it wasnt because i was hyperthyroid ,but i think it is ,i even get out of breath turning over in bed sometimes ,i can get out of breath walking some days then go days or longer as normal ,like a young girl :lol: .Also i am having alot of pain in the night in my legs and hips which wakes me up every morning when i could do with a bit longer in bed .and it getting me down ,the only good thing now is i do not need sleeping tablets but could do without this awful pain waking me up ....

sue

Hi Sue. I'd contact your endo's secretary and ask her about your medication when you have the RAI. When you get the appointment it'll tell you to follow the instructions from your endo.(that's what it said in mine anyway).

I have problems with my eyes. My eyes protrude from when I last had trouble with Graves. It's not that noticeable, but my eyes get dry and I have to use drops. When I had RAI I had steroids for a month to protect my eyes, and it's important I don't go hypo.

I was supposed to get my appointment for the RAI within a month, but someone forgot to send it out. :x I suppose it will vary depending where you live.

I don't get breathless. I have osteoarthritis, so I'm usually stiff when I wake up on a morning. My knees and back are the worst, but it varies from day to day. I have trouble getting upstairs at the moment as the muscles in my thighs have wasted a bit with the Graves. It has a lot to answer for. :lol: I have a small cushion that I put between my knees when I lie on my side, and I find that thay helps the pain in my knees.

I hope your pain settles down a bit.

Take care,

Marigold

Evening all ! Thanks for your reply Marigold, you are such a comfort, I'm glad you're there. Jane, I have only had to have medication so far but my grandaughter had overactive thyroid and reacted to the medication. She had a thyroidectomy as a bit of an emergency in the end, but now she is looking fantastic. Its the best thing she could have done. She gets tired sometimes, whe her bloods are low but she leads a very busy life, doing all the things she would like to do and although she has to take medications she is absolutely fine. She really had no choice in this, it must be difficult when the doctors give you an option. What are you supposed to do ?! Perhaps its best to take your time if you can, I'm sure they will guide you through it. Try not to be frightened, you really are going to be fine at the end of all this. Feeling hot, shaky and unable to sleep is typical hyperthyroid, I think most of us are up roaming the house in the middle of the night. Unfortunately thats when I find the biscuit tin. Sue, how can the doctor say being breathless is nothing to do with your thyroid ! I could hardly walk twenty paces in the beginning and went up the stairs like a 9o year old.

Take care all, hope you all sleep well tonight. Bess. Ps. If you are awake and hear a strange rattling noise - its my biscuit tin.

Hi Jane. Welcome to the forum. We all support each other, and it's good to be able to talk to other people with the same problems.

Are you on Carbimazole? You should start to feel better now you're on medication. I started to improve before the six weeks were up.

I had RAI in November. That was a doddle, just swallow a capsule and go home. Whether you have the RAI or the thyroidectomy is a decision that no one can make for you unfortunately. I know it's worrying. If you become hypo after treatment it only means you have to take thyroxine for the rest of your life. It's only one tablet a day.

It is an awful illness, but you will feel better soon. I felt so ill last year I(thought I would never feel well again, but I feel fine now. Keep your chin up. Keep in touch.

Take care.

Marigold

Bess, Marigold,

Thanks for getting back to me so quickly, thank god I found this website. You realy have got the T shirt which although my friends and family mean well have not.

Yes Marigold I am on 40 Carbimizole and 120 proponolol per day. The GP put me on this at the beginning so I have been on it 2.5 weeks now, I feel less breathless already and now have achey legs and clicky hips like Sue. The endo said that it was because it had been left untreated and is one of those things that will go when I am stabalised.

I would like to say Bess that I have never been so hungry in all my life and yes the biscuits have taken a hammering, it seems to be sweet things that I need, I think that I may have picked up a slight addiction to cadbury's mini eggs. (good job it's nearly Easter)

I have read scary stories equally about RAI and surgery on the internet as have done little else for the last week. The the fact that yours was a screaming success is a massive boost and will be for others who may need to go for it in future. At present I don't feel able to do the isolation associated with it. You never know by the time I start to feel better anything is possible. I will keep picking your brains if that's ok.

All the best

Jane

hi everyone ,

hoping you are all well or coping,

i get a lot of comfort knowing we can share our worries and experiences

marigold i am going to phone endos secr atary tomorrow aslo i will phone christies to see if they have had a referal from my endo,hoping they havent forgotten to send it ,i will be mad if she has.

ive had a terrible night with cramps and pain in my joints even cramp in my stomach and back ,not had a wink of sleep. i cant wait to feel well again.

welcome jane together we will get through this terrible journey to get well

so sitting here tacking it easy with brainfog having a ciggy and a cup of tea trying to keep awake ,and trying to making a list of apps starting with blood test for eye specialist weds to join all the other lists to jog my memory take care all sue

Bess, I thought I heard mice in the night, then I thought no it'll be Bess eating her biscuits. I have a very sweet tooth, (I didn't have before). I don't eat sweets, but I can't say the same about the biscuits.

Jane you made me laugh about the cadbury mini eggs. When I was pregnant, many years ago, I had a craving for cadbury cream eggs.If I started eating cadbury eggs again I think my husband would get worried.

You said you'd been reading scary stories in the internet about RAI and thyroidectomy. I told my endo that I'd been frightening myself reading horror stories, and he said to remember that people tend to put their stories online when something has gone wrong, but we don't hear about the people where everything has gone right.

Sue, sorry you're not sleeping. It's awful when you're in pain. Everything seems worse in the night. I have awful dreams. I hope you get your appointments sorted out.

Take care everyone.

Marigold

Hi All, Sue i too have flashes to the side of my right eye this only came about from my diagnosis so, im guessing its the graves also have & still do suffer with leg pains endo told me this is thyroid related so, basically we just got to put up with the s..t!!!!!!!!!

Jane welcome to the forum its seems a bit early for your endo to be discussing thyroidectemy or rai seeing as you have only been on meds a couple of weeks my t4 was 83!!!!!!! & i still had to wait 14 months for rai but, i suppose it depends what part of the country your from.

Glad to hear everyone else is keeping well marigold & Barry i never had trouble with my tongue just everything else lol Well all take care. Elaine.

Hello everybody hope you are all well,

Sue did you manage to get an appointment?

Marigolod, I have mini eggs as I write for theraputic reasons obviously!

Elaine, I agree with you, this is coming round fast but equally I am not sure if I want to put it off. If it is an inevitable outcome then I am more than happy to cut out the middleman, it's just the uncertainty and finality of it thats a concern. I am going to chat with my GP and see what he thinks. I'm a Northerner, not sure if that is the policy up here or not but I will ask.

On the whole I feel calmer and less breathless so things are looking up.

Keep your chin up

Jane

hi everyone hope you are all well.

hi jane i rang my endos secratary yesterday and explained i had forgotten what he told me about my medication ,and could he get back in touch with me but i have not heard anything as yet but there was 2 number not known on my phone so will ring back tomorrow i was having blood test yesterday too for the doctor i saw with my eye, who i go to see tomrrow at 1-30 .I have not phoned the hospital today as i had an app at my doctors at 11-30 this morning for more ptu .my blood pressure was abit high but not enough to worry about he was also pleased that i dont need a vitiman d jab ,he also told me to phone christies to see if they will provide an ambulance ,so im glad i havent phoned as yet as i can ask the 2 questions together.My doctor also said he would support me in claiming disability allowance so requested a form from them today.All these appointments have done my head in and i just wish they would send for me now as i have had enough of it all. In the morning i will call christies about my date and ask if i can have an ambulance .

Marigold when you had Rai what did they tell you about contamination ,do you have to stop in one room for a while or if you sit in a chair how do you get rid of the contamination,..can you use library books ,will i have to clean everything i touch ,

hope i will soon be laughing about this memory fog and beable to write better letters :oops:

take care sue xx

Hi Jane. Do you get your mini eggs on prescription? Ten three times a day. I agree with you. If you need RAI, you might as well get it done.

My endo said he was looking for a long term solution, either RAI or thyroidectomy. I'm pleased you're starting to feel better. The carbimazole must be doing it's job.

Take care.

Hi Sue. It sounds like you're having a busy time with your appointments etc. Don't get in a tizz about the isolation after the RAI. I had to have my own cutlery and crockery for three or four days, and it had to be washed separately. I had to sleep alone for eleven days, and flush the toilet twice. I had to avoid close contact with small children and pregnant women, but the physicist who gave me the capsule said that the three weeks isolation only applied to mothers of small children. However, I did keep away from our small granddaughter for three weeks just to be on the safe side. He said I could pick her up and even kiss her as long as I didn't have her sat on my knee for long periods.I was allowed to go out shopping as normal. He said the RAI wouldn't hurt me, and it wouldn't hurt anyone else. Different parts of the country seem to have different rules., and really you don't know what to believe.

Take care.

Hope everyone else is ok.

Marigold

Hi all, after having my blood levels checked over the past few weeks my tsh has returned to a normal level of 2.76 ,they say I'm clinically euthyroid whichever that means,I am still taking propanolol as I have been anxious for years. I still don't feel 100% but I guess that's the graves, does anyone know what and ideal normal tsh level is ? Hope everyone is doing ok

Hello Barry,

Glad to see that you are on the mend. According to Thyroid UK website the TSH range is 0.4 to 4.5 so it seems like you are right in the middle.

I have had more blood tests today as I have a very sore throat and feel quite tired all of a sudden. The doc thinks that its probably a virus but could be a reaction to carbimazole and wants to check the white blood cells.

Am more confused than ever over the RAI/surgery thing as doc says that in his opinion RAI is safer and I was thinking the opposite.

Hope everyone else is bearing up.

Jane