over active graves part 2

Hi good to hear from you Mari and lotte glad your doing ok , hopefully I will be put on thyroxine soon,the doctor said he expects my levels to rise as he thinks I'm in a transient phase ,if I don't improve il visit my gp

Hi All, Im back!!!!!!!!!!! Had a s**t few weeks my sons marriage broke up just before xmas they had been together 10 yrs turns out she has been seeing someone else so, i have had to be around to support him. Hope everyone had a good xmas & new year? my birthday is 30th dec so i celebrated both & got rat arsed lol. Hope everyone is feeling ok? i Feel ok at the moment still only on 25 thyroxine but, that must be right for me. Take care. Elaine.

Hi Elaine. Pleased you're back, and feeling ok. Sorry about your son, I hope things work out ok for him.

I'm back on block and replace for three months, and I feel really well. Long may it continue.

Sounds like you had a good Christmas and birthday. We had a great Christmas, our granddaughter is 17months, so it was all dollies and toys. She didn't know what to play with first.

Lotte. Pleased you're ok too. The endo said I'll know in three months if the rai has worked. I'm much calmer, so I think that's a good sign.

Barry, as Lotte says get your blood checked again if you don't feel any better. You're the only one who knows how you feel.

Take care everyone.

Marigold

Hi everyone ,

glad everyones feeling better ,and getting through your treatment .

i see my endo on the 18th and just hope my mind and memory hold up for the day ,my app is at 4-30pm . how long is it before he sends you for

rai once your on the medication.

do any of you get benefits for this condition only my doctor said he would

support me for copd that i suffer with asthma but i cant get it for hyperthyroid ..Just wonderd Anyway off to write all the symptoms i have been going through and hope he listens :roll: :roll: keep well all of you

i enjoy reading and gathering information from you all so i know i am not on my own

Hi Susy, You are usually on carbs for 18-24 months before being put forward for rai but, it depends on the severity & endo. Glad everyone is doing well lets hope it all continues. Marigold i have 5 grand-daughters ranging from 21 months to 9 years so it was the same in my household (im only 49 & writing that made me feel old lol) Barry i agree with Lotte & Marigold 2 months is a long time & being hypo is just as bad as hyper believe me & i am sure many others will agree. Take care all. Elaine.

hi everyone ,hope everyone is well and coping with their illness .

I have been to see my endo today and my results were TSH 0.03

FT4 13.5 TT3 3.0 he told me to put my medication up an extra tablet

to 100 mg of PTU a day .He also asked me what did the heart specialist

say ,he was supprised i had not had an appointment, he also wants me

to have a lung function test. I am so breathless but he thinks its not

the thyroid thats doing it ,and wouldnt have it when i said its was worse

when my levels are out . He has also said he is booking me in for RAI

which will be at Cristies in manchester a good 3/4s of an hour from where

i live .Will i be able to get an ambulance as i cant walk far without getting

out of breath and i am frightend of driving on motorways :oops:

please can one of you explain my levels i would be so grateful.

The next question once i have had the RAI and as you know i live on my

to pass the time away i thought i would decorate my living room hall

and bedroom ,it would only be emulsion and glossing ,will i be fit and

well enough to do it :? how are you now barry looking forward to

hearing from you and marigold ,and thankyou elaine for replying to me

take care all of you

sue xxx

hi all,i am still in a transient hypo phase after rai .After seeing the specialist who gave me the rai i took myself off to A & E as i was feeling so washed out,i had every test done they could possibly do and it came back that i am very hypothyroid after rai,the doctors in the hospital contacted my endo who doesnt want to give me thyroxin yet as it wont enable them to get a accurate reading on my levels as i am still in a transient phase .I am due back to see specialist beginning of march.I have been getting out doing 2 mile walks this week and my anxiety does seem to have dropped along with the palpitations,hopefully my body will balance out,hope you are all ok ,take care

hi barrp,

that sounds awful hope you feel better soon ,take care sue

Whats been the situation with everyone else who has had RAI? after reading thru different posts on here i am beginning to wonder why they are leaving me without thyroxin !

As stated i had my RAI on the 1st of december and after last weeks bloods they said i am hypo transient phase.The question is did anyone get put on thyroxin straight after rai and if so what happened? my heads battered cheers barry

Hi Barry, After my rai last feb i went back on 5mg carb for a few weeks then had a blood test where it came back i was hypo so was put on 50mg thyroxine. I think it all depends on your endo but, like i have stated in earlier posts being hypo is just as bad as being hyper.I know they say that rai can take up to 3 months to work properly but, in my case it worked quickly!!!!!!!!!!!!!! Have you been back to your gp? & if so what has he said? some gps are not good at thyroid problems so i would just go back & say that you dont feel right. Well hope everyone else is ok? Elaine.

Hi Barry. After my rai I went back on thyroxine 50 mcgs daily, a week after the treatment. My t4 shot up so the thyroxine was stopped and I went onto carb only. My t4 came down so I took carb and 100 mcgs of thyroxine. I had my blood checked again this week and my t4 has gone up again so my thyroxine has been reduced to 75. I have to continue on the block and replace treatment for three months, and then stop it to see what happens. I have to have my blood checked every two to three weeks.

I agree with Elaine some gps don't know much about thyroids. Mine phones me to ask if the results are ok. Really fills you with confidence.

My endo is really good, so I ask him what I have to do. If you still feel awful I'd go back to your gp.

Hi Sue,

After I had my rai I followed the rules regarding avoiding close contact, having my own cutlery etc, etc, but apart from that I carried on as normal.

I felt a bit jittery a couple of weeks after when my t4 went up, but it soon settled when my treatment was changed.

If you need an ambulance your gp surgery should be able to arrange it.

I'm not very good interpreting blood results, but your t4 is at the lower end of normal.

I hope you feel better soon.

Hope everyone else is ok.

Marigold

Thanks for replying, marigold it seems ur still up and down with regards to ur medication u could well be still in transient phase and that's why ur levels keep going up when u take thyroxin? I presume this is the reason my endo,gp and specialist won't put me on thyroxin as it won't give them an accurate Reading to how my thyroid is working long term , as stated I have also been into A and E for an xtra opinion and they all refuse to give me thyroxin at this stage so I'm just tuna have to dig in. What a horrible thing this is

Hi, Dave, Elaine, Lotte, Marigold, Barry etc

I have just discovered this forum and have over the last few days been reading all your posts.

I too have the dreaded GD I was diagnosed in June 2010 but I suspect my thyroid has been playing up for at least 6 years before that. I was told I had anxiety disorder but I just knew something else was wrong.

Anyhow in May 2010 my heart started to race and would not slow down, went to GP who sent me straight to hospital, what felt like pints of blood were taken and they sent me home with warfarin and beta blockers. Phone call from a consultant next day stop taking the warfarin and beta blockers you have an over active thyroid! I then had a follow up Appt with GP who said \"oh dear we should have tested your thyroid years ago\", great I thought now you tell me!

Anyway started seeing Endo and Cardiologist - tested positive for Graves antibodies in July 2010 and then the chemist full of tablets began - 40 mg carbizmole, 10 mg bisoprolol, 1.5mg warfarin.

I am now down to 20 mg carb and have Appt to discuss recent blood tests on Monday with GP as I have been feeling really tired, have aches in my arms and legs especially my left arm, memory is shot and trying to concentrate for any longer than 5 mins is impossible.

I am also waiting to have a Cardio version which is were they shock your heart back into a regular rhythm have any of you had to have this? Or did the heart racing/palpitations settle down on their own?

I'm not sure of my levels as I haven't had a test for ages will know on Monday.

I feel that it is always me pushing for tests/ appts etc anyone else find this?

When I said to my GP \"nobody seems to be coordinating my treatment\" she said \"oh it should be us really\"!!!

Anyway sorry I'm going on a bit this is a good place to let off steam to people who understand.

One last question GP also got me to complete a depression/anxiety questionnaire which she is going to score on Monday - anyone done this? What I don't want to happen is them to say I have depression and then only focus on treating that, if you know what I mean.

Right I'll stop now going to try and attempt to push the Hoover around.

Take care all

Kat

Hi everyone, not been on for a while, just caught up with posts. Kat, I wouldn't worry that your GP will only focus on anxiety/depression. I'm impressed they are going to score you on this - I think we would all probably be off the scale most of the time ! It sounds as though your Drs etc. are covering every angle. I also think that some GP's aren't good with thyroid problems. Elaine, sorry to hear about your worries with your son, hope this work out ok. It doesn't matter how old our children are we never escape the worry.Barry, Marigold and everyone, sounds like you are having to work through a lot - hope things get easier soon. It seems to take forever. My last blood test showed TSH had gone up from 0.01 to 10, not sure whats going on. The GP said I was still overactive but results from Path Lab said \"patient appears to be mildly overmedicated on current dose of Carbimazole \". GP asked me if I could cut my tablets in half, as I'm only on 5mgs I said no ! I don't really have a lot of confidence in him but I'm probably being very unfair. I don't feel too bad but have started myself back on Propanolol 20mgs three times daily as thumping heart and anxiety were becoming a problem again. B/P at surgery was up again (white coat syndrome?), have to take some home readings at next visit. Anyone else had blood pressure going up with this thyroid stuff? Take care all, sorry for the long ramble. Bess.

Hi Kat. Welcome aboard! We all help each other on this forum. I don't know how I'd have managed without it.

I had an echocardiogram as I had palpitations, and the endo found a heart murmur. My heart was normal, the murmur was due to the increased blood flow as my heart was beating too fast. The palpitations have mostly settled down now. I'm on betablockers, carbimazole and thyroxine.I had radioactive iodine in November. I feeling loads better.I have a small goitre, but it's getting smaller, and I feel a lot calmer.

Like you, my gp said I was suffering from anxiety, but I started with graves 40 years ago, and I knew it had come back, but he didn't believe me. I've never felt so ill.

I can never understand why gps are surprised that someone who's ill is suffering from anxiety. It's only natural isn't it? Well, I think it is anyway.

Keep in touch, and let us know how you go on.

Take care.

Marigold