TPO etc. And reducing carbimazole

[PeggysM]

So, I finally got my results. I had to lie and say the consultant had already given them to me and discussed them at my last appointment 🤔🙈. My TPO is 587 (normal range 0-75)

TRAb 3.5 (normal range 0.0-0.9).

These were taken on the 26th September.

I've now had a letter from my consultant to say to reduce my carbimazole to 15mg for 3 weeks, then 10mg for 3 weeks and 5mg maintenence for the forseable. I have to see my GP first which probably won't be for another week with it coming to New Year. Repeat bloods in about 5weeks. My current thyroid levels are within normal range.

Im after other people's experience on reducing carbimazole and being on a maintenence dose. I understand everyone is different, and everybody reacts differently to meds and med changes, I know that.

[SlowDragon Administrator]

So your TrAb antibodies confirms you have Graves' disease

But your TPO antibodies are very high. This may just be due to Graves, but it's possible to have Hashimoto's at same time

thyroiduk.org.uk/tuk/about_...

Either way you need vitamin D, folate, ferritin and B12 tested

These are frequently too low with Hashimoto's or Graves. Ask GP to test or test privately

Vitamin levels need to be optimal, this can help reduce symptoms

Come back with new post once you get vitamin results

Similarly many, many people find strictly gluten free diet helps, sometimes significantly

While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first

Assuming test is negative you can immediately go on strictly gluten free diet




(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)




Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse

chriskresser.com/the-gluten...

amymyersmd.com/2018/04/3-re...

[PeggysM in reply to SlowDragon]

I had vit d levels tested on the 26th Sept. too. The level was 47. I'm not sure of the units/range but the consultant said they like it to be above 50. I've had low vit d in the past (hence previous thyroid testing for extreme tiredness, muscle aches etc. a few times over the years). All other tests b12 etc. Have always come back normal but I haven't had them tested since the thyroid issues. I have always tried to remember to take vit d since it was last low a few years ago but I'm not good at it.

I will get back on it as it takes a few weeks to work.

When I see my GP to get my new carbimazole prescription, I'll ask about vit testing and see what's said.

I've gradually become intolerant to dairy over the past year or 2. I haven't had an official lactose intolerance diagnosis, I just don't consume as much of it be I never know if it's going to make me sick etc. when I eat it.

I did wonder if there was any significance as to how how my TPO is compared to other people with graves and/TRAb

[Catseyes235]

Remember you are entitled to get a print out of any blood test so no need to pretend anything!

I had carbimazole reduced twice and both times the hyper symptoms returned so that eventually I had radio iodine which knocked out my thyroid gland and I went on replacement thyroxine which I’ve b even on for 30 + years now with few problems other patience needed to reach optimal dose.

[Lora7again in reply to Catseyes235]

I am glad it worked out for you but it hasn't for a lot of people who have had their thyroid destroyed and are now struggling to get well. I don't intend to ever have that done to mine because I am now in my second remission the last one lasted 4 years and I had a normal life so I am hoping this one lasts as long.

[Lora7again]

What is your TSH, T4 and T3? My Endo overdosed me on PTU and I became very ill with a TSH of 9 so you need to keep an eye on your levels.

[PeggysM in reply to Lora7again]

I'm not sure of my results, theyre within norm which is why they are reducing my carbimazole. I'll have another blood test in about 5 weeks

[london81 in reply to PeggysM]

you need a print out of these tests too, as within nhs normal ranges means nothing it’s important to look at the tests as a whole as well as in relation to symptoms. i now always get prints for test results for myself and parents, so i can see the picture over time.

[london81 in reply to PeggysM]

probably easier to just do a subject access request for all tests with ranges since you started with that GP? it should be free and it is your legal right to obtain under gdpr/data protection