1st post! Help with test results/Graves

[Jenny2025]

Hello everyone. I was diagnosed with overactive thyroid ('probably Graves') in March. These are my blood test results. Consultant says I will definitely have to have RAI or Thyroidectomy . I am seeing him in 2 weeks and he says I will need to make a decision. Not keen on either really. I have no TED symptoms but heard that RAi can trigger TED? Currently on 40mg Carbimazole and 3 x Propanolol per day and feel OK. I don't really understand the bloods, although have tried reading posts on here, but I gather they are improving. What are the dangers of sticking with the meds? I am really not keen on being permanently Hypothyroid. (I am 56 by the way) Any thoughts from anyone please? Thank you!!.

[WobblyX]

My history is similar to yours - diagnosed overactive Thyroid due to Graves' disease in June this year. I'm 58, and I was Prescribed Carbimazole 40 mg and beta blockers. My T4 started at 63 and my results by August were very similar to what your have now. However in August my liver function was severely affected by the carbimazole and the Endo took me off it and was not happy to put me on the alternative as my liver needed time to heal. We discussed options and RAI was no longer a safe option as it can trigger hyperthyroid in the short term and require Carbimazole in initial management ....and I could no longer have this. The Carbimazole had worked and brought my thyroid levels down so we had a bit of time, but due to Graves these levels were going to rise again. So I was left with little options and had a thyroidectomy a few weeks ago. I would suggest to keep reading up on the options as Carbimazole is a very strong drug and although some people have been on it a long time it can cause other problems. This forum has been a huge help to me over the last few months both with signposts to other sources of info and with ongoing learning how to manage my health....

[Jenny2025 in reply to WobblyX]

Thanks WobblyX. Not sure about my liver function but am about to have another blood test and will see what Consultant says. Yes, I am concerned about long term effects of Carb, Take care of yourself.

[Clutter]

Jenny2025,

I think your endo is prematurely recommending RAI or surgery. Many patients take Carbimazole for 12-18 months before weaning off and trying for remission. If remission fails, which it is likely to do in more than 50% of Graves patients, you can resume Carbimazole. Don't let your endo push you into treatment you don't want.

The ATA has recently said that it can be fine for hyperthyroid patients to take Carbimazole for up to 10 years.

medscape.com/viewarticle/86...

online.liebertpub.com/doi/p...

[Jenny2025 in reply to Clutter]

Thanks Clutter, I did read the medscape one before. There are always arguments for and against!! I would prefer not to have rai or surgery but also concerned about toxicity of Carb. Still thinking!! Many thanks.

[Fruitandnutcase]

Hi,

I'm in remission from Graves. I started out at TSH - < 0.03. (0.35 - 5.5 ) below low reference limit Free T4 - 38.5. (10.0 - 19.8) consistent with hyperthyroidism - above high reference limit.

I spent four weeks on 20mcg carbimazole and it didn't make any difference, my endo wrote and told me to double it up until I got to the hospital (I waited three months from diagnosis to firsthospital visit)

After two months on 40mcg I was quite hypo by the time I saw the endo and that was pretty horrible, Graves is no fun but being hypo has problems of its own and is no fun either.

My hospital uses block and replace to treat Graves so once I got to the endo I was told to stop the carb 'for a few days' and start levothyroxine straight away.

I took carbimazole for a year and generally felt well on it. As I approached signing off time I kept being told that should I relapse then it was RAI fir me. I kept telling them no it wasn't. They kept saying 'your eyes are fine' I kept saying that they weren't - they were / are extremely dry, I get blurred vision, they water, I get vertical sort of double vision - I see a sort of after image when I look at things like the credits on TV.

Anyway, after a year, my blood results were where they wanted them to be and I was signed off and after a week of worrying about relapsing and being given RAI, I made an appointment to see my GP and said I wanted to go back into carbimazole should I relapse and could they a) refuse to let me do that and b) refuse to treat me and the answer was no to both questions so I went home and got n with life.

Obviously if I had a tumour or something like that I would have to reconsider but just to be given RAI after a first try on block and replace - then I'm afraid that I wasn't wanting that at all.

Once you have no thyroid then you are off the hospital list and you have to rely on your GP who may know a lot about hypothyroidism - because I think eventually you become hypo - or who may know very little about it and who may or may not be willing to give you enough Levo to make you feel well and who may or may not be willing to give you T3 should you need that.

So although I am not a doctor or a nurse I have read a lot about thyroid problems because of my condition, I have come across many people who have taken carb for long periods of a time and I decided that inmy case I'd rather stick with carbimazole even if it an old and I once read a 'dirty' drug (whatever that means)

I have to agree with clutter, unless there is some particular reason in your case that we don't know about then I think it's quite soon to be offering RAI or a thyroidectomy.

It's a tough decision to have to make. Bear in mind that people who use this forum are often quite desperate - and there are probably loads of people out there who have had RAI or total thyroidectomy who are doing very well and are happy with their decision - they tend not to use a forum like this.

[Jenny2025 in reply to Fruitandnutcase]

Thank you! That's really helpful. Allthe replies are going to give me a bit of confidence when I see the consultant again (hopefully ). Much appreciated.

[cc251254]

Hi Jenny2025 I agree with Fruitandnutcase - unless you are having problems taking Carbimazole, I would not rush into or be pushed into having RAI or a Thyroidectomy, both result in being HypO afterwards and RAI can also leave you HypeR again and RAI has to be carried out again.

I was diagnosed with Graves in 2013 and with similar bloods to yours. After a few weeks on 40 mgs Carbimazole (too many weeks because I then went markedly HypO), I was treated with Block & Replace which is taking Carbimazole (in my case 40 mgs) and Levothyroxine (in my case 100 mcgs). I was on this for approx. 22 months (again too long on the same doses because of a lack of communication between specialist and doctor). Consequently, when I was taken off the meds to see how my thyroid re-acted, within a week to ten days, I was back to square one with a vengeance !

My specialist then tried pushing me into RAI even using scare tactics to get me to have it BUT I refused (having gone to see him armed with some knowledge about the affects of taking Carbimazole long term - and my most effective point of knowledge was that it is well written that if a patient is going to suffer any dangerously harmful affect from Carbimazole, it will occur within the first 3 months of taking it).

The result was that I am now being treated with Carbimazole Titration (no thyroxine, which didn't agree with me or I just felt so ill on it because the dose was never adjusted and I know now that it should have been). I started this treatment at the beginning of May this year and started on 40 mgs daily and this has now been titrated down to 5 mgs daily. I also asked the GP to prescribe Beta Blockers which I had never had before but feel they could have helped me to cope a little better over the last 3 years.

I'm pleased to report that I feel SO MUCH better than I have done for far too long ! I'm not there yet because I still have some very bad days but I am now having some very good days too !

So I think as long as the specialist and/or doctor carry out frequent white blood cell tests, you should be fine. Some patients on this forum and other forums have been on Carbimazole for 20 years !

I'm 61, Graves has taken its' toll put 10 years on me because I've lost so much weight, been so ill, not had a life, beaten the stuffing out of me, a shadow of my former self etc etc - time to put up a fight !

Be strong

Christine

[Jenny2025 in reply to cc251254]

Wow! Thanks Christine, you have done really well. That's very helpful advice as it looks like we are in similar positions and age, although so far I am feeling OK (since taking the drugs) and all the weight is back on (sadly), so I will see if I can argue the case with the Consultant unless he has compelling evidence for his treatment approaches. Take care. Jenny.

[cc251254 in reply to Jenny2025]

From what I have gleamed through the various forums I am a member of and the hours of research I have done on thyroid disease (had to do it because like most I received very little or no information about it from specialist or GP), the earlier the diagnosis the better chance for remission. In my case, I left it far too long to get diagnosed and in hindsight some of the symptoms had been "creeping up" on me for years before I finally (in 2013) had so many symptoms that I thought my end was nigh ! Prior to that I had always been able to find a reason for say the slight loss of weight (my fathers diagnosis of cancer or maybe the planning of my daughters wedding), the swollen ankles and lower legs (wearing high heels for a special occasion) etc etc. It was only when I started having the racing thumping heartbeat, couldn't tolerate heat in any form (weather/central heating), couldn't tolerate loud noises, blurred double vision (but I don't have TED), shaking hands, anxiety, panic attacks, breathlessness, extreme fatigue, not being able to walk more than 20 steps, strange racing thoughts, tired but wired and then plus a dramatic fast weight loss no matter how much I ate including a craving for sweet food - went from size 10/12 to size 6/8 -I thought oh dear, I need to get an appointment at the doctors !

So I think the disease was well progressed when I eventually persuaded myself to go to the doctors.

Not managed to gain much weight yet - in fact only 4 lbs over 3 years but I have just learned (again from forums/internet) that being over medicated on thyroid meds could be the reason.

Good luck Jenny and keep us updated !

Christine

[Jenny2025 in reply to cc251254]

Thanks Christine. I went to the GP pretty pronto, but it seemed to come on quick and poleaxed me! This is a lovely supportive forum.

[Fruitandnutcase in reply to cc251254]

Well done for fighting your corner Christine. I've read that about carb too. Interesting we both became hypo due to lack of testing. Another reason I started dong my own fingerprick testing.

Do you keep a diary? I did and was able to see that I was actually making progress even if I didn't always feel like I was.

I did it online at one point but at the moment I'm writing notes to help with my inflammatory arthritis and at the I'm using an a A5 diary I bought cheap in the New Year sales - before that I was using a freebie pocket diary.

I don't write much at all, just a few lines but looking back is amazing. When I was doing it for my Graves it was really useful because I could see exactly how I was feeling on a particular dose and that came in handy when I wanted an increase in my Levo. I think I started on something like 25mxg and increased to 50mcg, then eventually alternated between 75mcg and 100mcg although I have to say I often just took the 100mcg. Then one day I stopped the lot.

[Silver_Fairy]

You were only diagnosed seven months ago, it's way too early to be pushing you into anything as permanent as RAI or TT. Do lots of research before you decide.

There is a lady on FaceBook who has been taking Carbimazole for twenty years!

[Jenny2025 in reply to Silver_Fairy]

Thanks Silver Fairy. I will practice my assertiveness! Jenny