Graves disease

[ali56]

Hi

I have been diagnosed and treated for Graves' disease for over three years.

Saw consultant back in April he said he couldn't stabilise my levels t4 was 22 range 11-22 put me back on 10mg carbimazole blood test taken 3 months later t4 had risen to 36

Put carbimazole back up to 40mg carb for one month then reduce to 30mg and blood test in six weeks. Now results are tsh 3.05 range 0.30 -5.00 t3 4.61 range 0- 7.0

T4 9.4 range 11-22 .Was informed 2 weeks later to reduce carb to 15mg so surely with taking 30mg for over two weeks have been over medicated anybody understand how carb works. To be honest am sick of them playing about with levels and my consultant is pushing for RAI. Have appointment with him 29/9/2014.

Thank you

Ali

[marram]

Have they considered block and replace?

[ali56 in reply to marram]

This consultant doesn't do block and replace was under another consultant at the beginning who did block and replace and the levothyroxine made me feel ten times worse it is a minefield.

Ali

[Fruitandnutcase in reply to ali56]

Do you realise that if you have RAI your thyroid is very likely to become permanently under active and need to take thyroxine / T3 for the rest of your life? Might be worth persevering with the Carbimazole or even trying B&R again.

I don't know a huge amount about levels but I've got graves and I would have thought TSH 3.05 is quite high and that your thyroid was more likely to be becoming under active which is why they are reducing your carb again. I spent a month of 20mcg carb with no effect, it was doubled up to 40 for two months and I became very under active and felt quite ill but in a different way to when I was very hyper. Once the levo was gradually increased to 100mcg along with the 40 mcg carb I felt a lot more 'normal' I think it can sometimes take a while to get levels sorted out.

You might just be exchanging one sort of problem for another if you go for RAI - but again you might not be - there must be people who feel fine after RAI and get on with their lives without coming on here.

[ali56 in reply to Fruitandnutcase]

Hi Fruit and nutcase

Thank you for your reply. I do not want to have RAI but what I don't understand is why they take you right down so you go hypo why can't they use a lower dose carb as maintenance instead of all this yo yoing of levels. I was on 5mg a year ago and my levels were stable then he took me off carb and in six months they soared again. I wonder if the consultants want you to have RAI so they can discharge you to your gp!!! Anyway my heart goes out to everyone who is on the thyroid roundabout and am thinking of you all.

Ali xx

[ali56]

Sorry don't know why you got so many replays from me.

Ali xx

[Clutter in reply to ali56]

Ali, I've deleted the duplicate replies. Sometimes there is a lag before posts are sent and if you resubmit you get duplicates. If you click on the down arrow next to Recommend you can select delete to remove duplicate posts or edit if you want to change something.

[ali56 in reply to Clutter]

Thank you Clutter think I must have been over enthusiastic when replying!!!!

Ali xx

[Fruitandnutcase]

My carb was raised to 40 after my first blood test - got a letter from my endo telling me to double my dose etc. I think if I had been tested a month from when I started 40 mcg carb I could have been given levo sooner because I would have been caught before I became hypo. As it was by the time I got to my first endo appointment my TSH had gone from >0.03 (which I was told later was too low to record) to 7 so it was a real roller coaster for my poor old body.

Sounds like you were being titrated if you were down to 5mcg then they stopped. Had you been on a large dose of carb then gradually reduced to the 5mcg?

I couldn't agree more - I'm convinced they want to give you RAI then get rid of you back out to your GP for them to deal with you - when you are hyper and on B&R you 'clutter up' the hospital - give you RAI - you're 'cured' then if you become hypo you are on your own with your GP.

Good luck for the future

[ali56 in reply to Fruitandnutcase]

That's exactly it you are cluttering up their clinics!!!!

RAI does not cure graves as it is an autoimmune disease. The consultants are only addressing the thyroid gland and are not interested in getting to the bottom of autoimmune disease. There is a study going on in Bristol they are researching I think it is Apitope immunisation to kill graves antibodies am not sure wether it was you who told me about the research in Belgium. Wouldn't that be ideal. I am going to hang in there I am endincrinologist nightmare he has already called me a pain.

Ali xxx

[Fruitandnutcase]

Exactly. Even if they kill off your thyroid you'll still have Graves. I wonder how long it will take for Apitope to come up with their vaccine. I got the impression they were quite far ahead with it when the got the EU money. I think it is the most hopeful thing to happen in a long time for Graves - particularly for young people. Another good reason to try and hang on to your thyroid for as long as you can.