Graves disease, confused.....

[Diddy]

I was diagnosed with graves last Nov (09) and have been on carbimazole since then. The dose was reduced when my levels came down but they then went up again. In July I became underactive so endo put me on thyroxine as well. One every other day. TSH level as of last week is now 4.68 so endo increased thyroxine to 1 aday (50 mg) Carbimazole is currently 15mg daily along with 20mg propranalol. My legs are so painful and I'm so tired but am finding it difficult to sleep. I get a lot of pain and stiffness in my feet, hands and knees as well. Especially in the morning. I'm also getting a lot of hot flushes which I had when my levels were very overactive. Does this happen if you are underactive as well? My skin feels prickly and my feet and lower legs keeping tingling. Are these normal symptoms for an underactive thyroid as well. I dont understand why they dont just reduce the carbimazole.... I am also taking prednisolene and having pulsed IV steriod treatment as have been diagnosed with thyroid eye disease. Maybe its all the meds I'm on.

Thanks for your help x

[Hidden]

Diddy,

The carbimazole blocks your body from prodicing any thyroid hormones. The hope is that if you're not producing any hormones the Graves will not be so fierce. Graves attacks much more than just the thyroid. The thyroid hormones you need are then given in tablet form.

BUT....

Propanolol is known to interact with thyroxine, it tells you in the patient information leaflet. it stops the inactive t4 convrting into the useable t3. ncbi.nlm.nih.gov/pubmed/706...

Too much unconverted t4 will give you aches and pains.

lack of B12 can give you tingly skin..

Nel

[valerie in reply to Hidden]

Thank you for that bit of info on propranolol and thyroxine. Perhaps that accounts for the spring in my step when I stopped my propranolol for a week (taken for HCM not thyroid) a few months back. I shall definitely talk to my GP and cardiologist about this....Val

[Diddy in reply to Hidden]

Hi Nel

Not sure if you recieved my reply just now. I got kicked out the site

while typing. If not thank you for your reply. Very informative.

I don't see the specialist until earyl Jan so will give him a call as I don't

think I'm just supposed to stop the propranolol.

Can I just buy B12 supplements of are they prescribed.

I'm new to this site and have found out more than the specialist and GP

tells me.

Thanks again for your reply and help.

Diddy x

[Muffy in reply to Hidden]

You can buy Vit B12 supplements over the counter. I read some time ago that they have found that supplements are just as good as injections, so may be worth a go.

[elayneg]

Hi

I was diagnosed with overactive and put on propanolal and carbimazole together within a week I could not get out of bed unaided, I couldn't walk for the pain and thought I was going to die. Fortunately for me my daughter came and stopped all medication till I saw the specialist. He said that I was one of the few people that they didnt agree with and had done the right thing. I will eventually go underactive he has told me. My levels went back to normal within six weeks and now I am on no medication although I have to see him every six weeks.

Now I take Vitamin B complex, multivitimans and omega 3 I can say I have not felt better in a long time.

My main problem was putting on loads of weight which left me a bit bothered to say the least. This is now coming of very slowly but I feel better in myself.

The hardest part for me was being unable to find any support or people to talk to about things I was experiencing. Rashes lots of tingling in my feet and hands in fact my hands went numb especially when Iwas driving.

I hope you are better soon

[Muffy in reply to elayneg]

As Nelly said, T4 conversion to T3 is blocked. Therefore if your FT4 is tested, it may well be high, but to me your TSH is far too high, should be around 1 and you must, must have your FT3 tested.

Show your consultant the insert from your Thyroxine and print out the Ncbi website page and show it to him/her.

[Diddy in reply to elayneg]

Hi Muffy

Thanks for your reply. Strangely enough the rheumatologist

administering the steriod treatment said he wanted the TSH levels

down to under 2 which would help the joint and muscle pain.

You'd think the specialists would be aware of whats interfering with

what.

I'll take a look at the NCBI website.

Thanks again.

Did x

[Diddy in reply to elayneg]

Hi Elayneg

Sorry to hear of your illness. Thanks for your support and suggestions.

Glad your beginning to feel better now. It's great you can do it with

supplements and not all the meds.

I'd be frightened to stop them with having the graves eye disease as well.

Did x

[Diddy in reply to elayneg]

Hi Muffy

I got a print out of the levels. They are as follows:

fT4 level 15 pmol/L (12.3-20.2)

TSH is 4.86mIU/L (0.3-3.94)

It doesn't say what the fT3 is

I'm not sure what the readings mean.....

I'm going to ask the endo if I can just lower the carbimazole and stop taking the thyroxine. I seem to be getting horrible side effects.

Thanks for your reply.

Did x

[Muffy in reply to elayneg]

I know someone who was becoming quite ill on the carbimazole and finally once she was off them she really improved, but was showing so many symptoms of an underactive thyroid when on the medication.

At a TSH of 4.86 you are probably underactive and most people feel well when the results are around 1. Also an FT4 level of 15 is probably too low for you and should be around 18, in other words, top end of the range.

I'm afraid the NHS incredibly rarely measure the FT3 level, but with your results, it may be worth asking the endo to check.

If you feel you have symptoms of hypothyroidism, you really must tell the specialist.

Hope this helps.

[Diddy in reply to elayneg]

Hi Muffy

Just spoken to the endo. He has agreed to me stopping the

thyroxine and reducing the doze of carbimazole to 10mg and to

get the bloods checked again in a couple of weeks. He's

concerned that I don't go overactive again. Fingers crossed x

I'll ask for the fT3 to be checked with the next blood test.

Thanks for your help and speedy reply.

x

[Muffy in reply to elayneg]

Hi,

Pleased you've spoken to endo. Shame he's stopped the thyroxine though, but as bloods checked in a couple of weeks time, not too bad.