Overactive Thyroid Graves Part 4

Hello Everyone.

Well following on from my RAI which was on 11th April, at my last endo appointment 2 weeks ago my TSH had gone to 0.5. Over the last week i have been feeling totally drained and well and truly unwell.

My body aches and having trouble with aching teeth and facial muscles.

Convinced that my levels had now risen and gone Hypo i went for a test on friday. The result is my TSH has dropped to less than 0.03.

As per previous replies i gather its my Thyroid kicking out the last of its thyroxine, but can anyone help with how long it should go on for? I feel as unwell as i have ever done and not sure what to do. My GP said because im under the care of Hospital that its up to them to decide what to do, so i just called the Endo and you have to leave a message etc etc.

Any thoughts anyone?

Chris xx

Hi Chris. Sorry you're feeling so unwell. What was your T4? It's much easier to work out what's going on if you know both your T4 and TSH levels.

Your GP sounds really unhelpful.All I can suggest is that you persevere with contacting your endo. Sorry I'm not being very helpful either, but it's all I can suggest. If you know your T4 then let me know what it is and I'll try and help.

Marigold xx

Hi Marigold,

They did not test the T4 and on the previous test they refused to tell me the T4 level so i don't know. I actually have no idea now what to do. The endo usually takes 2 weeks to respond to a message and the GP won't do anything until the endo replies.

Sorry i can have my bloods done at a different hospital (i'm on the border of 2 health trusts) but if i do i won't get to see the results. I can only call the endo and hope they reply.

Chris

Hi Chris.I get really annoyed when someone refuses to give me blood test results, and I'm sure you do too.I always think it's my body and I have every right to know what's going on.

If you could persuade your GP to contact the endo on your behalf it might chivvy them along a bit.

I hope you get things sorted. Take care.

Marigold xx

Hi Chris,

Same sort of thing happened to me, I ended up in tears with GP and she agreed enough was enough and phoned the hospital for me. She then basically took over my care. Go back to your GP as it sounds to me like you are headed under active.

I've always got my tests results, can't understand why they won't give you them, also they should be testing your T4 as how else will they know what your thyroid is up to?

Take care, it will get better.

Kat x

hey Kay, Marigold,

I managed to see a GP today and get some more details. Before my RAI my TSH was 2.3 and T4 was 18.5, then following RAI on 11th April my TSH had dropped o 0.5, I do not know the T4 as the Endo would not tell me.

The GP told me that from fridays bloodtest my TSH was 0.03 and T4 was 21.9. He is going to fax the Endo and see what they think. He doesn't know if i'm overactive again or whether its the thyroid kicking out last of thyroxine, Any Ideas? I have another appointment in a week so hope the endo has replied by then.

Any Thoughts?

Chris xx

Hi Chris. I'm glad you managed to see a GP.

Your T4 is right at the top of the normal range (11 - 22), so that's not too bad. Your TSH is suppressed as your T4 is a little bit high, so your thyroid doesn't need to produce any more thyroxine. This could be because you're a bit hyper or because your thyroid is kicking out the last of the thyroxine. Whichever it is it does take time for things to settle down when you've had RAI. I went overactive again and had to go back on block and replace for three months.Then it was a matter of adjusting the thyroxine dosage until my levels were in the normal range.

You will get sorted, it's just a matter of time.

Take care.

Marigold xx

Hi Chris,

I agree with Marigold, glad you got to see your GP.

Your symptoms sound like you are heading under active so maybe it is just the thyroid getting rid of everything. At least you are going back for a follow up next week.

Take care and let us know how you get on.

Kat x

Hello everyone

I hope your all well

Had my bloods done on Monday and got my results today

T4 18 , T3. 3.5. , TSH 27

My tsh as come down really well in 3 weeks of taking 100 thyroxin but I don't feel any better ,I'm not so tired but still dizzy every day ,the heart burn and anxiety are back again . I'm suppose to be going away for the weekend at the end of the month but if I'm still like I am now it won't be worth going .

How's everyone else? Have you all booked holidays ?

Take care Deb xx

Hi Deb. I hope you're feeling better now.

I haven't been very well the last couple of weeks. I've had a sinus infection and I've felt so tired, I could have slept all the time. My sinuses are a lot better now, but I'm still tired.

I'm having a thyroid check and a fasting blood sugar on Thursday.So we'll see if they come back normal.

We haven't booked a holiday. Hubby likes to be at home, and I'm not really bothered about going away. I tend to get in a tizz worrying about catching planes etc. You wouldn't believe the things I worry about. I hope you manage to go on your weekend away.

Take care.

Are you back Sue? I hope you've had a good holiday.

Thinking of everyone.

Bess, if you're reading this let us know you're ok. We're worried about you.

love,

Marigold xx

Hello all, thankyou so much for your words of encouragement, it means such a lot to have your support. I am staying at my daughter;s at the moment, doing well but back home on Friday as I hav e an appt. with the cardiologist next week. I am very nervous about this ! I am now going for walks each day and cooking meals etc so getting back to normal. Still wake up scared though, thinking how things could have gone and worried in case in happens again. Suppose I will get my confidence back in a while. Kat, I dont really know what caused the heart attack as my arteries were clear on the angiogram. I think really it was long term stress and perhaps the awful heart symptoms when my thyroid was overactive. How are you KaT ?

Marigold, I'm so sorry you are feeling rotten, sinus infections are horrible. How are you doing with the migraine aura, are you still having them ?. I hope ytour bloods show some answers, perhaps you are run down, and I know what the worry thing makes you feel like ! I have sent away for a "mindfulness" book and tape which is supposed to help you control all those wayward thoughts, will let you know how I get on !

Sue, hope you are having a good holiday and having a good rest hun and not having any dramas while you are away !

Deb, Maria and all, how a\re you doing ? Thinking of you all and hoping you are ok. Also those we havent heard from for a while.

Excuse the awful typing, got the laptop balanced in front of me. Love to all, you are such lovely friends.

Take care,

Bess xxxx

Hi All

Marigold- sorry to hear you have not been too well but hope you are on the mend now.

Bess - hope your appointment goes well with cardiologist, try not to worry too much, just keep focused on the positives

I had a week of appointments last week, haematologist first, apparently things are moving in the right direction now although my cells are still too small but she does not want to see me for 6 months. She hopes by then all will be back on track.

Next was the endo, she is pleased with progress, my T4 levels are coming down, they were off the scale in April, had fallen to 58 in May and are now 40! I am taking 35mg of carbimazole a day now which I seem to be able to tolerate ok. Endo thinks levels will be back within normal range in another month so things have improved quite quickly. I have another appointment on 1st July to hopefully discuss arrangements for surgery!!

I also saw a rheumatologist who was really nice, he said there was a possibility that the arthritis would subside once I get thyroid sorted but I was not to expect it - still living in hope then! He gave me 2 steriod injections which said would make life easier in short term. There has been some improvement in that I am not so stiff in a morning but I'm certainly not fully mobile. And the bad news is the shoulder I didnt have the injection in now appears worse & keeps feeling really odd and weak! I have no idea whether the steriods will have side efffects either, the doc was fairly vague about that. He did say there have been great improvements in arthritis medicine in the last 10 years and it would be possible to lead a normal life!

So it was a positive week in some respects but a disaster in others, my 20 year old daughter was involved in a car crash & is now in hospital with a badly broken femur & large metal plate in her leg which has to remain for ever! The guy who crashed into her had been in the pub all afternoon, was arrested at the scene & has been charged with drink driving - apparently this is not the first time he has been done! She has a long recovery road ahead but we are just taking one day at a time at the moment.

2013 has certainly been a year to forget, it started badly with my youngest breaking his collar bone on our skiing holiday on the first day in the first 1.5 hours on the slope! They say things come in 3's so if you include me being ill since February we should have had all the bad luck we are going to have!! fingers crossed.

Sue - hope you have had a lovely time in Mallorca.

With best wishes to you all

Kind regards

Ann

Hello everyone

Marigold sorry to hear you haven't been well,sleep is the best thing when your feeling ill but I know it's not nice when your tired all the time. Hope your feeling better very soon . I know what you mean about the worrying ive never worried about things as much as i have since having thyroid problems . I only tend to book short holidays as I like my own bed, I get homesick after two days . X

Bess it's nice to hear from you you are bound to worry after what you have been through.

I hope everything goes well with the appointment next week . The book and tape sounds a good idea , let us know how it goes . X

Ann you do sound like you and your family have had a bad year , I hope things improve . Sorry to hear about your daughter . Drink drivers don't get a hard enough punishment . X

Take care Deb xx

Just new to the site, I have been looking for information about thyroid/ Graves' disease, I went to the doctors about 2 months ago now suffering with pins and needles and shoulder pain, I was referred for physio (still waiting). Because of some of the other things I was experiencing for example dizziness, joint pain as well as pins and needles she suggested I have a blood test, they came back that I have high free t3, I have no idea what this means, since then I have had another blood test to double check and again she said it was high, I now have to go for a neck ultrasound and have an appointment with endocrinology...my doctor didn't go into detail but after sending my results to the specialist to look at he thinks I have the start of Graves' disease??????

My test results are as follows

Free t4. 12.4

Free t3. 7.8

TSH less than 0.05

Can anyone shed any light on this for me, very confused

Hello everyone

Found out nearly a month ago that I have Graves, and had probably had it for months before going to the doc. In fact, the only reason I went to a doctor was that I developed a goitre. I had noticed that I'd lost weight, but I was more active and it was summer. Plus, stress at work was getting to me, and I'd thought that was the reason my heart was palpitating.

When the doctor checked my BPM it was 150-170, and my BP was 160+/90+. The doctor also did an ECG in his office and took a range of blood samples.

I was put onto Ativan and PurBloka that evening to calm me and my heart down, and a cortisone tablet the next day. I can't remember exactly what the figures for T3, T4 and TSH were, but I remember that one was nearly 50x higher than normal and the other around 100x! I was admitted to hospital on the Monday, and was there for a week while they monitored my heart, and my white blood cell count due to the Neo-Mercazole.

My neutrophils went from 2.64 (still low anyway apparently) before I went to hospital, to 1.25 by the fourth day. The endocrinologist was getting worried that I wouldn't be able to continue with Neo-Mercazole, due to my lowered immune system. When she called a haematologist to take a look, she started to talk about other causes for the drop in white cells, and would need to conduct a bone marrow aspiration to see whether my marrow was healthy. Needless to say it was my turn to panic, and the next day my count went back up to 1.8! The count went up again the next day, and I was discharged and spent a week at home. By the next blood test, my count had gotten to 3.43.

I’m still taking 30mg PurBloka daily, and I’m on 20mg Neo-Mercazole at the moment. Will cross the RAI/surgery options bridge if I come to it. My next blood test is in a month, and it’ll be another full blood count and a liver function test.

My worries at the moment are-

-That my eyes will never get back to non-poppy and non-goldfishy- has anybody had a similar issue?

-That I’m going to put on massive amounts of weight, especially during our winter-argh! It seems

that this is a common issue. Do you think a better diet and more exercise will help? What type of

exercise has been effective?

- And that the Neo-Mercazole will affect my liver function- even bigger argh! Small risk apparently, but

still worrying.

Apologies for the essay!

xx