Hypothyroidism journey from Carbimazole to remission to coming off Carbi to relapse to being in FT4 range to very hypo to remission

[El4545]

Hello! I wanted to update on my situation. I was first diagnosed as hyperthyroid a few years ago. My FT4 was 100 (12-22 was the range) I started on carbi 10mg. I asked people about weight and someone on this forum told me they saw a bit of weight gain but it all levelled out in the end. I agree with that in my experience. We are used to eating lots but then eventually you realise youre not so hungry all the time and you don’t actually need that much food. Have a look if it would help at some of my posts and the helpful information members gave to me to help me understand what I had. I went gluten free and took vitamins recommended on this forum.

I was told the NHS leave big gaps between appointments but I forgot and the first time I went into remission (I was at the top of the range within 9 months of being on carbi, started on 10mg then moved to 5mg) my appointment for a check up was not for 7-8 months later and by the time I saw the NHS I was hyper again 50 (12-22) FT4 and had had a terrible time in life with relationships and other things in the preceding period. I didn’t make the connect. I went back on carbi but then again the appointments were spaced out. I had started doing my own testing via the handy - in the post kit - from Medichecks (this group recommended it to me) but didn’t keep up and I ended up hypo. Very hypo in fact. My FT4 was showing low when we were tracking at NHS but my TSH needed to go up some more so we stayed on the carbi - it was always about how I felt. And I felt ok. But when I tried to book my next check up with NHS they never had any appointments within the timeframe the doctor suggested, it was always a lot longer. This is why I always had these big gaps between appointments - admin issues. So finally I ended up super hypo for quite a while. Something like 9 (12-22) FT4. I was feeling very tired. Bed at 9pm. Anyway. I came off carbi feb 2020 (about 11 months after my first remission) and started checking every 4-7weeks via Medichecks. Didn’t want a repeat of last time. Within the first week my FT4 was within range 13 (12-22). Its stayed like that ever since and now it’s September 2020. I feel like a different person, the feeling of having drank too much coffee when there were heightened situations has gone.

Sometimes if I was drinking and something was emotional. I’d be over emotional. I no longer need to eat all the time. My thoughts are more structured and I’m not so indecisive. I don’t rush about like things are unravelling before me or I’m chasing a carrot all the time. I feel grounded. Yes, I have moments when I’m anxious and adrenaline pumped but these are much more ‘normal’. I can’t believe I lived like that for so many years. My life wasn’t so exceptionally different to others but inside you juts felt a strain others don’t. I can enjoy more things now and thanks to this group my journey was made easier. I hope this post helps anyone reading as I was helped by this forum when I was first diagnosed and ever since.

If you have any questions, please let me know.

[Bellazzurra]

Thank you for sharing this. I have Graves’ Disease and among other things, it really affects my mood. Some days I get anxious, depressed and highly irritable. I even experience thyroid rage from time to time. After only two months on Carbimazole, I found out yesterday that my medication had made me hypothyroid. My doctor’s taken me off the antithyroid medication entirely and we’ll watch to see how things go and whether my levels stabilise naturally on their own. I’m encouraged by your story and I can only hope that at some point, sooner rather than later, I’ll also feel like myself again.

[El4545 in reply to Bellazzurra]

Keep monitoring both your levels and how you feel. Wishing you all the best. ❤️ This site has so much helpful info from great people. If you need specific guidance or general perk up, post here!

[Bellazzurra in reply to El4545]

Thank you! I’ll keep posting; this site has certainly been a great source of knowledge and encouragement to me 💕

[Angel20]

Why the big gaps for next appointment, you know if it was me, very quickly I would have left the hospital\clinic or whoever treated me, we sometimes need to take matters into our own hands and take responsibility for our own health. Personally I would of asked for next appointment there and then and have it in my hands. Private blood testing is another alternative I use them all the time. Take responsiblity

[El4545 in reply to Angel20]

Hi Angel20 absolutely agree! Still getting my Medichecks every month, so test at home regularly. I asked for hospital appointments there and then on the spot but NHS reception always said they were fully booked and the large gaps were unchangeable and - at the time as a newbie I thought, well if the hospital are ok with it then a long gap must be acceptable and won’t have any serious medical effect on me! And then per my post I realised that was the wrong assumption!! One time, I called the doctor out to the appointment booking desk in the hospital, having realised long gaps aren’t good and the gap was way beyond the time frame he recommended - he told me he would personally send me an appointment, but it never came. So, I have been private testing ever since. Live and learn!

Such great support on this site from people who taught me to understand the disease, especially needed as I was my hyperthyroid levels were so high I was anxious and it was difficult to think straight - and personal life and relationships suffering. The members here taught me importance of private testing so thanks again! Much appreciated! 🙏🏼

[Angel20 in reply to El4545]

Wishing you the best take care