Overactive Thyroid Graves Part 4

Hi Bess.

5 miles a day!!! Have you got some hiking boots? I'll be thinking of you having your scans. You'll be fine. It's good they're trying to get to the bottom of things. As you say it could have been your silly thyroid that started things off.

Let us know how you get on. I'm fine.Little granddaughters 4th birthday tomorrow, so we're looking forward to the party.

love,

Marigold

xxx

Hello all,

I found this discussion thread while searching for experience from ending Block and replace treatment. I was diagnosed with Graves in Jan 2012, and came to theend of my Block & replacement tverapy last week. The doctor I met at the appointment seemd very unsecure about how and if I should continue withany levotyroxine or just end with all meds at once. She could not explain how quick my thyroid would start producing hormones again, and when I expressed y worries for my eyes (have had mild TED, still experiencing some symptoms) I ended up being prescribed to go from 150ug levotyroxine to 100ug. Now I would like to understand if this is a normal ending of B&R treatment? i have also read that somepeople quit allmeds including levothyroxine at once. I would be very grateful if you could share your experience! Perhaps I should add that I will take new labs in two weeks and that I prior to the decision to quit B&R had a TSH very close to the lower limits of normal and a T4 above the normal range.

Thaks for your support in sharing your experience!!

Hello Marigold, and everyone else,

Just a little update.. follwing on from my RAI in May my TSH continued to drop and my T4 rise, i was placed back on Carbimazole and have been waiting for an endo appointment (my last one was end of june). I went for a blood test mid july and the consultant kindly sent me the results last weeks saying your TSH is now right down, less than 0.01 and t4 continues to rise, it was only mid 20s so not too bad. They have increased my Carbimazole.

Had a letter the day after with my next endo appointment which is 2nd December.

So i'm guessing after being told by them over and over that the RAI would work it just takes a few weeks, has it not worked? And the next stage could be further RAI or Surgery?

And on another note, ive had jaw, teeth pain for months, just aching etc nothing too painful, the GP and dentist can't find anything but it now looks like a wisdom tooth that i thought was already through is coming through further... Argggh... But would the thyroid have any connection to mouth, jaw pain?? i guess probs not.

On a more positive note i have a new partner, only have 3 days to work this week , then i have some holiday days.. woo i need a rest. Feeling all in all quite drained.

Hope everyones well.

Chris xx

Hi Everyone This is a blast from the past.I just thought I would have a wee look and see how my old comrades are doing.It is a year this week since I had RAI and I have never looked back.I saw my endo 2 weeks ago and he has released me into the hands of the G.P. as he is very pleased with all that has happened since RAI.My G.P. has been checking my blood tests every 4 weeks and as a matter of interest T4----25-2 TSH ---3-92.I am on 100mg thyroxine so they are happy with that.This is to encourage all of you who are on the long road to a cure. Believe me it will happen for you as it did for me but it is a long road.Sooooo dont give up and my thoughts are with you all who are battling overactive thyroids. Alice in Wonderland

Hello everyone,

quick update.. had blood tests back today and my RAI in May has worked.. which is the good news, the bad news is the levels were a little off;

TSH over 99.00 and T4 was at 2.0. The GP said "i don't quite know how you have been working/ functioning like this." She has put me on Thyroxine and will monitor me over the next few weeks.

At least i now know why ive been feeling so rough and have a clear way forward. Phew.

Chris x

Just to add to the previous 2 posts - I had RAI just over a year ago and went hypothyroid at my second post-treatment check so have been on thyroxine since. It has taken time to get the correct dose but am now settled on 100mcg three days a week and 75mcg on the other 4 days. Am so glad I went this route instead of carbimazole or PTU which I hated taking. Have also coped with 2 hip replacements (Feb and June) and feel NORMAL again! To anyone considering RAI I would say go for it!

AgW

Hello Everyone, I am new to this website and am finding the forum on hyperthyroidism fascinating. I was diagnosed with Graves Disease 4 years ago and was succesfully treated with carbimazole and then thyroxine for 18 months. I was fine for about 2-3 years, then early this year, due to significant stress, it came back - with a vengeance! My endo wants me to have RAI but I am very reluctant, due to the slight increase in risk for stomach cancer and breast cancer. As a breast cancer survivor with already increased risk for a reoccurence, significant cancer on my mother's family side, I do not want to have that risk. Have any of you had any other treatment options? RAI just sounds too drastic to me.

Hello everyone

How's everyone doing ?

Bess how did the heart scans go ?

Chris I'm surprised you have been doing anything with them levels, my tsh went to 80 after rai and all I wanted to do was sleep . It's a long road getting this thyroxin dose right as well so make sure they check your levels regular .

Marigold I've had my bloods checked again and wondered if you can help on my levels , my t4 is 20 t3 3.5 and tsh 7 , my dr said she doesn't know what to tell me to take as the t4 is showing I'm going over and the tsh showing I'm still under , I've rang the hospital to speak to the endo 4 times but always told he will ring me back and as usual he doesn't . So no ones told me what to take since having bloods checked last week.

I've been for the scan on my neck as it looks swallon where thyroid is and at the side as swelled so waiting on results.

Take care Deb x

Hey Deb,

I was coping ok until last week, this weekend and i have now basically collapsed, i'm sleeping constantly, napping all day etc. I feel ok for an hour or two and then i just drop.

I have had a headache for a week, my legs ache to the point where i can't drive and i'm crying constantly. I will be talking mid sentence and the words just stop. Its pretty strange.

I think i had some thyroxine in me but its now gone.

The GP has put me on 50mg of thyroxine but it hasn't seemed t do much, she thinks i need to be on much more but was reluctant to start too high. Can you help with suggesting how long it might take to settle or have an effect? I'm totally exhausted.

I'm due back at work this weekend but i doubt i'll be able to.

Any ideas?

Chris

Hello chris I had rai in January and I started on thyroxin I think in may , they started me on 50mgs as well but I'm now on 125 mgs . My levels are now more stable than they were . before starting thyroxin I was tired all day and night, I ached all over and also had headaches . I have my bloods checked every 3 weeks and I'm now just starting to feel normal and have more energy . Since being on thyroxin I've had trouble with my ears ringing ,hurting and feeling blocked but the doctors say its not to do with the thyroxin so not sure .

It takes a while to get your dose of thyroid right I'm still not sure if I'm on the right amount , if you can get away with not going to work that might be better while your levels are so out. Surely your doctor would put you on sick? . Take things easy while you wait for the thyroxin to work. Hopefully soon you will be feeling better

Take care Deb x

Hey Deb,

Well im off to the GP today to sort out a sick note (she said she would sign me, i just thought i'd be up and running again). Up until last weekend i was coping ok, but it just hit me.

Have been on the 50mgs of thyroxine for a week but no change, i guess i'm wondering how long will it take? Should i just lay down and rest or should i be trying to do stuff? I'm active but no idea what to do for the best.

I wake up and check off the following.... Tired.. Yes.... Headache... Yes.... Legs aching Yes.... Body aching Yes....Mind seemingly confused and agitated. Yes. Wanting to cry. Yes.

I guess it may take a while to get the levels straight, i just have no idea what i can do to help myself whilst thats happening.

Chris x

Hello Chris

I know it's horrible when your feeling like you do but just rest when ever you can, I tried to carry on as normal and it made me worse so then I just slept when I needed it .

I started on 50 mgs for three weeks then upped to 75mgs and that's when I started to feel a little better . At the moment I'm on 125mgs and find I'm ok all day and have lots of energy till tea time then I start to feel tired but I'm feeling a lot better so hopefully it won't be long till your feeling better. You will have more of a idea when you have your bloods checked and see if your levels have changed much.

Take care Deb x

Hi I was diagnosed with Graves' disease 2 years ago. Since jan 13 I have been in remission. I have been on hol for the last four weeks and have felt awful. Headaches have started again plus indigestion and heartburn. At night have the most awful shivers and heart is racing. Just feel absolute rubbish. Endo told me before indigestion wasn't a symptom but seem others has that problem too.

Symptoms are coming and going so does that sound like thyroid has one haywire again to others

Hi all, just had my endo appointment last week and he said I have t3 toxicosis, the large nodule I have is a hot nodule and the FNA was benign thank god, he said the rest of my thyroid looked to be ok and was suppressed due to the hot nodule causing all my problems, I now have 2 options, the first being RAI which I am not too sure about due to all the later precautions you have to take, I mean if you are considered a risk to others for a period after the treatment what risk is it to yourself???? The other option is surgery, he has told me it needs to come out either way as it is causing pain and is pressing on my windpipe causing me to wheeze.....please can someone give me some advice.

The only thing I cannot bear is the RAI not being successful first time round and still needing to take the meds, I walk round like a zombie off propranolol sometimes,

Anyhow once successful treatment has happened he said my thyroid should "wake up" hopefully and start to work