Graves - Frequency of blood tests

[Nathalie70]

Hello,

I relapsed from Graves 2 and half months ago. I had a test because I had signs of hypo early July but I was actually a little bit hyper. A month later I was clearly hyper and was put on 15mg of Carbimazole.

Basically, I was hyper for a month before being put on Carbi.

My GP has not given me a repeat prescription for Carbimazole and has not scheduled any blood tests. What should I do? What is the usual frequency of blood tests at the beginning of the treatment? I'm French and in France, it's every 3 weeks when the hyper was caught very early on.

My appointment with the endo is at the end of October as there is a 3 month waiting list at my hospital.

Thanks a lot!

PS: when I first had Graves I was tested every month.

[Clutter]

Nathalie, you should request a blood test prior to Carbimazole prescription running out so dose can be titrated if required. In the UK bloods should be done every 4-6 weeks until levels are stable but I've heard of patients parked on Carbimazole for months without a follow up test and becoming profoundly hypothyroid.

[Nathalie70 in reply to Clutter]

It's OK, I managed to get a new Carbimazole prescription in time. I know myself very well and I was still in hyper a week ago, losing weight. I now must be in normal range but I'm far from being in hypo - my last blood test was 3 weeks ago and my TSH was still suppressed and my T4 at 23 (9-19). It's going to be 4 weeks next week, I'm going to request a blood test then. When I tend to go hypo, my heart rate is below 60. I'm at 70-75 at the moment. Thanks!

[Nathalie70 in reply to Clutter]

Hi Clutter,

I had my blood taken yesterday. All my muscles are sore and painful, even the muscle of my fingers. Isn't it a sign of hypo? My heart rate has suddenly dropped too. I'll have the results by the end of the week.

I actually called my surgery explaining my new symptoms and the on-call doctor called me back and issued a blood test form. I went to the hospital yesterday. I think I'll manage to have a blood test very easily as long as I have changing symptoms.

Thanks for your precious help.

[Clutter in reply to Nathalie70]

nathalie, bradycardia & muscle pain are hypo symptoms. How much Carb are you taking? Sounds like you could reduce it a bit.

[Nathalie70 in reply to Clutter]

15mg for the past 8 weeks. I just had my results this morning and I'm still hyper:

TSH: supressed

T4: 25 (9-19)

My T4 were at 20 after one week of treatment, at 23 after 3 weeks and now at 25 after 8 weeks.

I have no hyper symptoms anymore, my GP is calling me this afternoon to discuss the matter.

As it's a relapse I can compare with the previous time and it's different, my T4 were at 12 after 8 weeks and we had to cut to 10mg.

[Clutter in reply to Nathalie70]

Nathalie, your dose will need increasing while your T4 is climbing. Just had a look at the hyper symptoms check list and muscle aches and pains are on it. thyroiduk.org.uk/tuk/about_...

[Nathalie70 in reply to Clutter]

I just had my doctor on the phone. She increased my dose to 20mg instead of 15 with a blood test in 2 weeks. I think I'm in good hands.

[Clutter in reply to Nathalie70]

Nathalie, sounds like it. She's monitoring you closely

[Nathalie70 in reply to Clutter]

Well she first suggested 3 to 4 weeks but I told her that my T4 had dropped suddenly in 2012. She double-checked and noticed I was right and suggested 2 weeks. She's very flexible.

As you always have good pieces of advice, I have a question - I forgot to ask my GP: I take my 15mg in the morning in a single dose. In 2012, I used to take 1 in the morning, 1 for lunch and 1 at bed time. Do you think my 2012 method was more efficient or is it the same?

Thanks!

[Clutter in reply to Nathalie70]

Nathalie, I was under the impression it should be taken 2 or 3 times a day.

[Nathalie70 in reply to Clutter]

I'm going to take 2 in the morning and 2 in the evening. Thanks!

[Stell55]

Hi there I was diagnosed with graves two years ago at first I was having blood tests every three months and urine tests every six after the first year I was dismissed from the hospital as the said things had settled far from it three months later I felt so unwell I saw another specialist who sent me straight back to the clinic where they told me my blood pressure and white cell count were down he's upped my carbomizal up to 15mg from 5 as they were not helping at all things are still not good at the moment going back to the hospital in 3 months but blood test at doctors next week hope you get things sorted xx

[Nathalie70 in reply to Stell55]

I'm really sorry for you. The first time I had Graves, I had a blood test every 6 weeks until stable and then every 6 weeks. I had to go private after 9 months because my results were OK - T4 middle of the range and TSH at 2.2 - but I was loaded with progesterone and couldn't sleep anymore. The private endo told me it was a sign I was cured and he was right, I was cured for more than 2 years. If you can, going private can be very useful.

[Stell55]

Many thanks I will look into it xx