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Thyroid UK
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Graves disease - anyone else very up and down

I've been taking carbimazole and then PTU for Graves disease for about four months. My levels are just about normal now but it's been a slow process.

The overall trajectory is definitely positive but I find the symptoms are still very up and down. Some days I feel great, other times it feels like I've taken a step back.

Wondering if other people have this experience? Or if it's a problem with my meds not being effective enough?

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Yes, I took 40 McGill carbimazole for three months, well 20mcg for four weeks and when that didn't make any difference it was raised to forty.

I was very up and down until the carbimazole kicked in and that was just before I saw my endo three months after being diagnosed - my GP surgery file shares with my local teaching hospital was why I think my doctor was able to go ahead and prescribe for me, I'm sure she probably spoke to the endo in the phone.

When I met my endo after three months I was quite hypo. I then started levothyroxine and I think that was when I started to feel more balanced although when I needed an increase in Levo I used to feel like I was hyper again (I wasn't!)

Keep a diary of how you feel every day, it will be very useful. You don't need to write loads, just a line or two about how you feel generally - unless you have a lot you want to put down that is.

I used to do that, it was very useful for when I saw my endo. I realised that when asked how I am I naturally say 'Fine' when I'm actually not fine at all. Then I used to just do a bullet pointed list of things I wanted to talk to the endo about.

I also kept a note of my bloodtest results and the medicines I was on. Hopefully you will go from strength to strength and the rubbish days get fewer ☀️

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thank you! definitely a good shout to keep a diary. I've been doing that with food etc to see if what I eat (or any alcohol intake) makes a difference but you're right it's a good idea to keep a general diary too.

And yeah, so easy to forget everything you want to say in appointments. I'm definitely going to take a list in next time.

hope things are going well for you

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Hopefully they are, I've been in remission for since 2013 and still feeling good. Took a while to get back to walking long distances but imthere now. You think you'll never be normal again but you are so hang on in.

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Hi ERSH! That is exactly how I feel! I was diagnosed in March and now on 20mg Carbimazole but still having some symptoms, nausea, fluy feeling, shaky, now hair loss and some days are better than others. Some symptoms are better than initially but I thought I would have felt better by now, and wonder, the same as you, if the drugs are effective for everyone?

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agh, so reassuring to find somebody with a similar experience (although of course i'm really sorry for you that it's proving hard to control the Graves, its such a nightmare!). I think effectiveness does vary - they've put me on 600mg of PTU (equivalent to 60mg of carbimazole!) because my levels just weren't coming down fast enough. Maybe if your levels are still high its worth asking for a dose increase? My endo didn't seem particularly surprised when I last emailed him that my symptoms were up and down, but I'd like to talk to him, or someone else, properly about why that is, what can be done to control it better etc.

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I have been on Carbimazole since late March early April this year. Initially on 15mg then up to 30 now back down to 15. So the levels have been up and down. It's a good idea to keep a journal as some days you feel on top of the world then the next day it's as much as you can do to get up. I have another blood test on Monday but can't get hospital appoint until September I was referred in April!!

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It's amazing how slow it all is isn't it. When I think back I was SO ill and my GP knew that too yet I still had to wait three months to see anyone. OK I was given carbimazole which was reviewed after four weeks when I got a letter from my endo with instructions to get more pills from my GP and double the dose.

I have this theory that Graves is treated by numbers and I always felt I didn't really need to be there - all they want is your blood and possibly your weight, then they would adjust your medicines, in my case it was usually increase my levothyroxine a bit because my carbimazole always stayed at the same (40mcg) throughout my treatment.

I said to the endo's 'assistant' one day that I couldn't see the point of coming in and hanging around for hours when all they really needed to treat me was my blood - and really I could be treated remotely (like I had been in the very beginning) She looked at me kind of puzzled. But really I had read so much about Graves in books and on here and I never felt the doctor's were all that interested in hearing what I had to say ( I mean that in a nice way, but I still felt superfluous).

I used to get myself all the way there, sit around for absolutely ages then see a totally different person each time I went, I imagine because I attended a big teaching hospital. My case wasn't really complicated, so I'd have been quite happy if they had just phoned and said 'Do you feel ok? Well in that case increase your thyroxine by x amount and get more bloods done in six weeks.

I would say to learn as much as you can and ask questions, be a partner in your treatment rather than someone 'it happens to'. ☀️

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You are so right. You have a blood test then either a telephone appointment or a face to face and its " well let's lower the dose or raise the dose " have another test in 4 weeks 🤓 endo appointment is in September so we will see what that brings not been before.

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yeah I feel similarly - to be fair I've got it good in that I see the same person every time and have been able to get fairly quick appointments and go in every 6 to 8 weeks. But I feel that unless things I tell him fit into his pre-existing narrative of how Graves works they are pretty much dismissed. And I always feel like I'm rushed out of there and not able to properly discuss what results mean or why I might be feeling how I do. I guess it's all just so underfunded atm in the NHS that they don't have time to tailor treatment to the individual.

Anyway when I went in yesterday they said my T3 and T4 levels are now normal (woop!) , he didn't really say why I'd then still be feeling a bit dodgy on and off but said that sometimes there's a lag time between levels being in check and symptoms being in check. My TSH is still nonexistent though so I guess I need the meds to keep my levels stable for a while longer so that my body hopefully learns to do it itself.

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