Graves

[Chessika]

I am recurring Graves over 20 year time scale.Been recently on 10ml Carbimazole. Bloods now shoe normal t3 t4 but TSH is non registering which it has always been whatever the drug regime. My Trab is negative.

Is this 100% Graves?

Also been told this week by endo I will have to take Carbimazole for rest of life. Not something I find appealing bearing in mind the side effects.

Are there any natural alternatives?

[Kerry124]

I haven’t had to take it for the rest of my life because you can go into remission I have several times

Some people I know have been on carbimazole for over 10 years and feel very well. As long as you have regular blood tests to monitor your levels I don’t see a problem with that. The alternative would be RAI or to have your thyroid removed which would make you Hypothyroid and you would still be on a medication for the rest of your life. I personally have no intention of having RAI or surgery to have my thyroid removed but that is my choice

Also have a look at Elaine Moore’s site she has a lot of information about Graves’ disease on there

[pennyannie]

Hey there again :

I'm confused - if your TRab are negative and your T3 and T4 in range - isn't it just a question of wait and see - regular monitoring and possibly intermittent courses of an AT drug - if, or when, your Graves waxes and wanes throughout the rest of your life ?

I can't add much to what I've previously said - do you know how to find your Profile page and all your replies and conversations since joining this patient to patient forum ?

Just press the Profile Icon on the task bar alongside where the Alert icon sits -

You can read any other person s Profile by just pressing the icon alongside anything they write -

If you get lost - just go back to your beginning by pressing your Profile which remains as a constant on the taskbar where ever you find yourself reading around - on this forum.

I see I shared Elaine Moore with you last time but that link is now not working as Elaine is ill - but we do have access via her archive records where there are sections on holistic and alternative treatment options that you may find of interest as well as so much research into this poorly understood and badly treated AI health issue :

web.archive.org/web/2024122...

[Kerry124 in reply to pennyannie]

Is Elaine’s site down? I must check it out

[Kerry124 in reply to Kerry124]

You are right. I hope she is ok 😔

[Kiki_76]

hi, I was newly diagnosed with graves last year. I didn’t get on with carb as I came out in an awful rash everywhere. So I’ve been on the lowest dose of PTU since and my levels are within range. The plan is to stay on that 18 months then come off it and monitor. I was told they’re the only two meds available or to have an operation. Thankful PTU worked. What side effects do u get with carb x

[Chessika in reply to Kiki_76]

Hi Kiki76I've had recurring Graves for 20 years. Initially had same reaction as you to carbimazole but I was worse with ppl. So took huge quantities, literally 4 times recommend antihistamine . Felt rubbish but my body got used to it and I was able to slowly reduce.

I mostly felt fine whilst I was active with Graves and don't particularly like how I now feel in 'normal' range.

Personally I feel there is much still not understood about the condition when I give my endo certain questions she just pulls a face and says not everyone fits in the box.

Which is just what i think I feel we are all very different and what's 'normal ' for one person doesn't necessarily fit the next but we have to be standardsised.

[Kerry124 in reply to Kiki_76]

I took PTU because I also came out in a rash with carbimazole. PTU is an old and trusted drug according to my pharmacist

[PurpleNails Administrator]

I have Non-autoimmune hyper & been tested negative for TPO, TG, TRab & TSI.

Have you been tested all thyroid antibodies.

I had an ultrasound which show a nodule, then a further uptake scan to see if the nodule was hyper functioning, which it was.

Nodules are described as non remitting. ie they will remain life long & unless treated definitively usually RAI or surgery the hyperthyroidism will not resolve.

Autoimmune conditions can go into remission & that can occur years later.

Unless you’ve been thoroughly investigated & your doctor knows you have a nodule they are incorrect to say your hyper will remain,

Antithyroid is only effective way to stabilise hyper levels. Natural remedies have not been shown to be effective. Some feel they relieve symptoms such as lemon balm.

[Chessika in reply to PurpleNails]

Hi purple nailsYes I had scan 3 years ago which I was told showed a normal thyroid gland no abnormalities.

However last year I had a CT scan of my rib cage to confirm rib fractures and my thyroid gland is also shown.

My endo tells me that this scan shows my thyroid gland is unsymetrical larger on the left. The significance of this hasn't been explained?!