over active graves part 2

hi everyone,loads of posts thats good to see most of us are getting by ok,i have been putting pressure on the consultants and gp to get my dates moved forward from march,was told today my t4 was fine but my tsh was way to high which suggests i am hypothyroid,does anyone know how long the transient phase is meant to last after RAI ? Take care ,barry

Hi everyone, hope you all ok. Marigold, could I ask you, ws it you who had migraine aura when you were first diagnosed ? If so, did it clear up ? I have had it back with a vengeance this week, flashing zigzags again and anxiety +++. Thanks Marigold, apologies if it wasn't you. Take care./ Bess.

Hi Bess. Yes, it was me! I've had migraine aura for a lot of years, but never as bad as when the Graves came back last year. It always lasted twenty minutes exactly, and it started mid morning every day. I'd have a few minutes break and then it was back, and it went on all day. It stopped as soon as my thyroid levels came down. I dare hardly say it, but it hasn't come back.I get heartburn too when my levels get too high.

I'm sorry you're not feeling very well. Have you had your bloods checked lately? I hope you feel better soon.

Take care.

Hi Barry. My endo says the transient phase is three months. I don't know why they won't give you any treatment, it would be ok as long as they kept checking your blood. You do right to put pressure on the consultants and gp. I hope you manage to get your appointment brought forward.

Take care.

Hope everyone else is ok.

Marigold

Think I mentioned before that I had been trying (with absolutely no success) to get my GPs to take my claim of having arthritis in my hands seriously. The standard fob off every time was 'wait until your thyroid levels are ok then all these other symptoms will disappear'. Yeh right. Anyway, last week I saw a new ( and I have to say very hunky ) GP who said that as I have Graves he could almost guarantee it was RA and straight away he sent me for xrays and did blood tests (hooray!). Today I am told that indeed I do have rheumatoid arthritis and really it's a shame I didn't do anything about it before now! :evil: Felt really smug but at the same time really annoyed. Hunky doc is going to speak to my endo to discuss suitable meds (ie: what will work best with Carbimazole). In the meantime I am still having to ask husband to unscrew the lid of the coffee jar etc. and plugging in the hoover or the iron is just not possible I'm afraid :twisted:

So keep a look out for your joints dear people - any stiffness, pain, swellings etc. please demand testing for arthritis. The sooner it's confirmed the better the outcome it seems. And, it's true what they say - get one AI disease and there's a fair chance another one will be along to join it shortly!

Still counting my blessings - things could be a lot worse.

Take care all

Lotte.

Hi Lotte. I wish I had a hunky GP, I'd go to the surgery more often. 8)

I'm pleased you got someone to listen to you, that's a novelty. As if you didn't have enough with Graves without having RA as well. I have osteoarthritis, mostly in my back, but my knees, neck and shoulders are affected too. The joints in my hands are getting a bit swollen, but they don't hurt thank goodness.

I hope they get you on treatment quickly, and your hands improve.

Take care.

Marigold

Hi Lotte, Bess, Marigold, Barry in fact everyone!!!!!!!!!!!!!! I too used to suffer with aura migraine but, have not had 1 for 18 months i too think it was down to my thyroid.

Barry i really cant understand why they are leaving you so long. After my rai my t4 was within normal range but tsh was slightly high but, not as high as yours & endo prescribed thyroxine being under may be safer but, it still makes you feel c..p & can be just as bad.

Lotte docs are useless at diagnosing as you know im glad you stuck to your guns as for hoovering, ironing etc let hubby do it i would lol.I still suffer aches & pains especially in my legs endo tested me for ra but came back negative i think for me the aches get worse when my thyroid is out also the palpitations i still dont think im on the right dose of thyroxine but, they seem to think i am still got blood test in a couple of weeks so, will find out then. Take care all. Elaine.

Hi Everyone,

Lotte - by the sounds of it we must be quite close to each other, sorry for the James Bond like secrecy but have to be careful on here, would your Endo = S and if it helps where I live has an angel in the park!!! This message will self distruct in 5,4,3........

So sorry to hear about your arthritis but at least you have a diagnosis now, shame about the Hoover and the ironing! Hunky doctor where I'm switching surgeries

I was tested for coeliac disease just recently another AI condition which funnily enough my Dad had and my niece has just been diagnosed with and now me with Graves must all be linked.

I get painful arms, wrists and fingers which I read could be carpal tunnel brought on by Graves. There are so many symptoms with Graves it's hard to know what to ignore or pursue if you know what I mean.

Take care everyone and have the best weekend you can,

Kat x

Evening,

How is everyone?

What's up with this crazy weather it's wild up here tonight.

Finally got my lower dose of Carbs and started them this morning, wish they would hurry up and kick in, anxiety/panicky feeling rearing it's ugly head again.

I'm back to weekly blood tests due to being on warfarin as a precaution due to thyroid giving me atrial fibrillation, hoping to have a procedure at end Feb that should zap my heart back to a regular rhythm hopefully it works and I can get off some of the tablets.

Anyway that's my news,

Take care,

Kat x

hi katt and all

I am on Diltiazem 200mg slow release for A/fibrallation and clopidrogal to thin my blood ,very scary isnt it ,i have been rushed into hospital twice

with it .frightend me to death .I have been very down the last couple of weeks and cant wait to have RAI but not had my appp yet .Coping with the loss of my husband and dad within a week of one another makes it so hard for me while coping with this terrible illness.WHen i had my last app on 18th jan my endo told me i had to stop my tablets so many days before i had my RAI but cant remember when and what to take so many days after ,i feel such a fool with this brain fog ,my doctor told me it was probably due to bereavement as well .

I wonder how barry is he was having a right old time of it .I hope hes been sorted .

how is everyone else would love to hear from you .

take care katt ,hope you feel better soon

sue xx

Hi Kat. The weather's still wild here, I think we've had enough of the wind and rain now. I hope you start to feel better on your lower dose of carbs, and I hope your heart settles down when it's been zapped. I know what you mean about all the pills, I feel as though I'm rattling sometimes. I have to come off the carbs and thyroxine in about six weeks to see what effect the radioactive iodine has had. I'm not looking forward to that. I feel fine at the moment, but I can't stay on carbs long term, so I'll have to come off it sometime. I feel a lot calmer, but I still have trouble sleeping some nights. I have all sorts of things going round in my head.

Take care.

Hi Sue. I asked the endo to write my instructions down for me as my memory isn't as good as it used to be. You've had a lot to cope with. I lost my mum a short time before I started with this illness, and I'm sure the bereavement had something to do with the illness recurring.

I hope you get your appointment for the RAI soon, and that you start to feel better.

Hope everyone else is coping.

Marigold

Hi all ,glad to hear alot of us are coping ok, I seen my doctor today and was told my levels were near enough spot on which I found strange as I was transient hypo and I am still getting symptoms, I have also developed a swollen Tongue has anyone experinced this? I'm just hoping my body will now settle down over time , take care all

Hi Barry. I was going to ask yesterday if you'd had a swollen tongue, and I forgot! Mine has been swollen for the last few days. It's sore down the sides. Is yours sore? It looks red, but I can't see anything else the matter with it. Not that it's easy trying to see your tongue!

hi marigold,yes it can be sore and red some times,mainly i can see my teeth indentations were its been pressing,apparently its to do with the antibodies and the graves,ive had 4 different doctors look at it to put my mind at ease so i wouldnt worry,how are your levels now? im only taking propanolol now i was shocked to hear my levels wear normal because i still get some symptoms,take care

Hi everyone, thanks Marigold and Elaine for letting me know about the migraine aura. Not sure why this flared up as my TSH is 10. Kat and Sue, what a terrible time you have been having, I do hope things improve quickly. Its lovely to have this forum as friends and family don't really know how it all feels. Barry, pleased you doing so well. I will have been on Carbimazole for a year at the end of Feb, wonder what will happen next ?! I am hoping that if I ignore it, it will all go away. I really feel for those who have AF, its so frightening when the heart is racing out of control like that and the fear makes it all even worse - happy days !. Dave, if you are checking in on here, hope all is well with you. Have a good weekend all, hang on in there. Bess

Hi Barry. I'll stop worrying about my tongue. Thanks for putting my mind at rest, I'll worry about something else now. :lol: Do you think it's connected to the RAI?I've never had tongue problems before. I've been using Bonjela, and it's helped a lot. We had some in the house from when our granddaughter was teething.

My levels are still a bit up and down. I'm still on 40 mgms. of carbimazole. I was on 100 mcg of thyroxine, but my T4 went up from 18 to 25 in a fortnight, so now I'm on 75 thyroxine. I have my blood checked again next week. I'm still on propranolol. I feel a lot calmer.

Did they tell you what your levels were? I hope your symptoms settle down.

Take care.

Marigold

Hi Bess.

I'm like you Bess, I hope it'll all go away if I ignore it. I feel fine at the moment on the block and replace, but the time is fast approaching when I'll have to come off everything and see what effect the RAI has had. My goitre is definitely smaller, and I feel much calmer.

You're right, a lot of people don't understand what a horrible illness this is.

We don't always get a lot of sympathy.

Take care.

Marigold