Test results interpretation

[Cal123]

Hi again, I've got Graves and am hyper on Carbimazole 30mg and Propanolol at 40mg 3 x day. The beta blockers have caused a very very itchy psoriasis - like rash. GP has just prescribed some steroid cream which should help! My question though, as I'm still very new to this is how to interpret my blood results, what do they mean? : TSH 0.05, T4 free 39.1, T3 free 13.3 and thyroid receptor antibody 21

[Fruitandnutcase]

Your TSH and T4 figures are similar to mine when I was first diagnosed with Graves. My hospital treats with block and replace some treat by titrating Carbimazole.

I was taking 40mcg Carbimazole every day - I couldn't have beta blockers because of my asthma so you don't absolutely have to take beta blockers. Once the carb has kicked in the palpitations ought to stop on their own ( or mine did)

When I started on the carb I was told by my pharmacist to take vitamin c so I took 1000mcg slow release every day.

Are you still waiting to see an endocrinologist or have you seen one?

When you post results post the figures in brackets too - they are the lab ranges. Have you had your b12, vitaminD, ferritin and folates checked out too. They all contribute to your thyroid's health.

Also make sure your bloods are tested regularly - last thing you want is to become hypothyroid because of the Carbimazole.

I started on 20mcg and after a month because it hadn't nade much difference, it was increased to 40mcg - I wasn't checked for another two months and by the time I was I had become very hypo. Not nice at all - so make sure your bloods are tested every month or so just to be sure.

Good luck.

[Cal123 in reply to Fruitandnutcase]

Hi fruitandnutcase.

Thank you. I don't have the lab ranges unfortunately, the GP just wrote these down for me this morning. Do they differ greatly?

I've had lots of bloods taken and I know he has tested for liver function and that was ok. I need to get them don't I !?!

I've seen the endo once and I hadn't done any research before seeing him but I did ask about diet and nutrition and links to other,auto immune diseases (my sister was diagnosed with coeliacs last year). He said there is no link!! then he offered RAI or surgery as options to think about before I go back in 12 weeks. I don't want these though. He took bloods then and has told me to go back for more at the end of April. that's too long, so I'll get them done before.

The propanolol is a bit of a strange one. I was having palpitations so was given it and after a few days (before I got the Carb) i was getting out of breath and on the advice of another GP I stopped it. I then got really short of breath, quite scary, and had to go for a chest x ray. My own GP then put me back on propanolol and my breathing is much better. However I now have a psoriais-like rash from it, and now have to use a steroid cream! Call me cynical but somebody is making some money from these drugs!

Can I request the bloods for b12, vitamin D, ferritin and folates to be done? As this will help with diet/supplements?

Sorry I've rambled a bit!!

[Fruitandnutcase in reply to Cal123]

Lab ranges do vary, my hospital TSH range is (0.35 - 5.5 ) but when I use Blue Horizon the range they use is (0.27 - 4.2). I use BH because it seems to be impossible to have T3 tested.

I can't believe that your endo doesn't see a link between auto immune diseases. Of course there is - look online and you'll find loads of evidence.

At one point while I was being treated i developed palpitations and thought I was hyper again but someone on here said that I was probably under educated and that turned out to be the case. I went to my GP who didn't want to increase my levo but as I had another month to go before I went back to my endo was prepared to give me amitriptyline - an antidepressant that is now used as a painkiller and other things) anyway I was only going to be on a very small dose so I took it and that stopped the palps - by the time I saw the endo I had stopped the palps and phased out the amitryptiline too, so that could be a possibility instead of the beta blockers.

I've been told that should I relapse my next step is RAI. Every time it was mentioned I told them I wasn't having it - and was ignored - so as I didn't want to get stressed about it (stress is very bad for Graves) I went to my GP who said they couldn't force me to have it and they couldn't refuse to treat me either so I was happy with that, obviously I would rethink if I had problems with antithyroid drugs at any time in the future. I think my go must have added that to my notes because at my final hospital appointment there was no mention of RAI.

I don't want it because I'm not confident I would be given the amount of levo I might need to keep me feeling well and I felt awful when I was hypo during my treatment.

I also feel it is just a way of the hospital getting rid of you back to your GP who as I say may or may not give you as much levo as it takes to keep you feeling tip top.

There are lots of examples of people who have stayed on antithyroid drugs for long periods of a time and Dr Toft's little book 'Understanding your thyroid' says that too - he is one of the 'establishment' so I always had that to hand when putting forward my case. So don't be pushed into anything permanent.

If you don't get anywhere with your endo email Louise at the Thyroid UK office and ask for a list of thyroid patient friendly consultants. you might have to travel but it could be worth while.

You could try a GF diet - a lot of people are trying that to reduce their antibodies and it seems to be successful.

Sorry to ramble on - hope there is something useful for you 😊

[Cal123 in reply to Fruitandnutcase]

I have the same reason for not wanting RAI or a thyroidectomy, although if i had to, I'm thinking at this point I would rather have a partial thyroidectomy than RAI. I've just heard so many bad things about it.

somebody else mentioned Dr toft to me in relation to staying on antithyroids and I did email and was sent his article on that. I am going to start putting a 'scrapbook' /journal together with all this info.

I might mention the amitriptyline to my GP, that sounds like something I could consider.

I will email Louise, thank you.

I'm certainly looking at and changing my diet and have just ordered a book by Susan S Blum, the immune system recovery plan.

Lots of useful stuff, thank you

[Fruitandnutcase in reply to Cal123]

Very good idea to keep a journal / diary. I did that. I kept a page for all my test results, I had the headings all marked out so that all I had to do was ask the result and lab ranges and just jot them down quickly. I also got print outs from the surgery but I liked to bring my notebook out and jot things down on the spot. I also used to write down any questions I wanted to ask. I always said I had the things I wanted to ask written down and no one ever minded.

I've just ordered your Susan Blume book - it looks very interesting. You learn so much useful stuff on this site don't you.

Joy is so right about having 'doing nothing days' I treated myself as an invalid. You are actually quite ill when you have Graves even if you don't look it and you need a lot of rest

[Cal123 in reply to Fruitandnutcase]

I decided to do it after reading on here that people were writing things down. My first thought it was may be my age, being forgetful! I'm 49! I also got scared as my mum has dementia. I was also really worried that I was getting very depressed and anxious with the panic attacks. Until I started reading I had no idea how much it affects every cell in the body. The relief after speaking to people like yourself and doing lots of research, is immense.

I hope you like the book, I've not got mine yet but it comes highly recommended!

[Fruitandnutcase in reply to Cal123]

I know, it's amazing isn't it - at one point I felt as if I must be mentally ill. Apart from everything else I was so stressed and anxious, there was nothing I couldn't manage to worry about. Now I'm fixed all that has gone.

Has your mum had her B12 and vitamin D and her ferritin and folates checked out? It is very important to have them well up on their ranges so if she hasn't it might be worth getting that done for her to maximise what memory she has left.

Yes, really looking forward to getting the book😊

[Cal123 in reply to Fruitandnutcase]

I'm glad to hear you're feeling better now!

It would be a miracle if i can get my mum or dad to a doctor for anything. Between me and my sisters, we have finally just persuaded them to go for a review of their current medications. I will mention this as well now though!

[Fruitandnutcase in reply to Cal123]

I can imagine - my mother died years ago but I doubt I could have got her to do it either but I've you've managed to get them there you might as well strike while the iron is hot.

[Cal123 in reply to Fruitandnutcase]

I'm sorry to hear that.

I know, I'll march them there myself if I have to!

[Fruitandnutcase in reply to Cal123]

😃

[Joy333]

Hi there,

You might want to consider asking your GP for a different betablocker until your thyroid levels come under control. When I was first diagnosed, I too couldn't get a breath and the palpitations were horrendous so I can relate to how awful you must feel.

It does get better once your levels stabilise and when they do you can start to reduce the betablocker. I agree with fruit and nutcase, it is so so important to get your bloods done every 4weeks initially and according to your results titrate your carbimazole by 5mg at a time, then 4weeks later get more bloods done and titrate and so on. Some peoples levels come down quickly and others like myself took quite some time to behave and come into range.

Allow yourself to rest as your body is going through a lot at the moment, I hope this helps a little.

[Cal123 in reply to Joy333]

I will, I am definitely going to be watching my bloods like a hawk. I haven rested as much as I should, but tomorrow is a 'do absolutely nothing' day! thank you Joy

[Joy333]

'Absolute nothing days' are great to do, enjoy😉