Life after carbimazole

[Lisa254]

Hi,

I am coming up to 3 months of being carbimazole free 😊 I have suffered side effects from coming off this medication (as I was so ill on it) but every week or so I feel a little lighter and notice another symptom disappear. I no longer have a dizzy head and panick,anxiety and depression are a lot milder now, I find myself doing things without thinking, that I would never of been able to do when on the treatment, including getting back to running and returning to work.

I have had my bloods checked a few times since stopping the meds and my thyroid is in normal rAnge I had my full blood count done which came back fine and also the following

Vit d 96 (50-200)

B12 314 (197-771)

Folate 10.4 (3.9-26.8)

Ferritin 47 (13-150)

I do still feel a little wobbly from time to time and a little groggy headed but no where near as bad as what I was (I'm hoping this will clear soon too). The thing that's annoying me is my energy levels even though they have improved no end I'm still finding a couple of afternoons in the week where My energy drops I sometimes have woken up like this but pushed through the day. Does it take while for your body to rebalance after being on this treatment? I am so impatient !!

Thank you 😊

[Kari55]

Glad to hear that you are doing well Lisa 🌺 x

[Lisa254 in reply to Kari55]

Thank you 😊 I still have a little way to go but it's such a relief to not feel like I did just hope these last few symptoms go soon ... how is your husband doing, I hope you managed to enjoy your holiday x

[Kari55 in reply to Lisa254]

I’m sure the few symptoms will go away soon. Thank you for asking about my husband. We did enjoy the holiday in August. He has tried to reduced his dose but every time he took PTU he felt awful so decided to stop them and have a blood test in 4 weeks. So we will see. His TSH is now 1.07. X

[Inafunk63]

Hi Lisa!! Was wondering how you’re feeling now? I can totally relate to your weird feelings! While on carbimazole and after coming off it I constantly felt like I was dreaming! And this feeling would come over me where nothing I looked at made sense. It wasn’t distorted or anything, it was just like my brain couldn’t quite fit the pieces together. I also didn’t know what was real anymore. Like patterns, or people talking on tv, they just didn’t make sense to me....it’s nearly like what I think paranoia would feel like. And it’s nearly impossible to describe. I’m around 5 weeks off carbimazole now (on PTU 75mg per day) and I feel so exhausted all the time still even though my levels are “within range” (had my bloods done a few days ago) I’ve just today decided to come off all meds and just see what happens. I know my Endo will be furious but he isn’t the one that has to live with these awful feelings. It got so bad a few days ago that I had this weird episode where I was walking into my kitchen and everything in front of my eyes went black, I was aware of my surroundings but couldn’t move, speak see or make sense of anything for a few minutes. I thought it was a seizure or I had a brain tumour and went to a&e where they did a ct scan and everything was fine. That was the final straw for me. I’ve lost over 8 months of my life due to not being given the right information by someone I should be able to trust so now I’m only trusting my body. I’ve been working diligently on my diet for over a year now, and I exercise and I’ve been supplementing what I need so I feel I’ve given my body the best chance to fix itself....if it doesn’t then I’ll cross that bridge later but I’m going med free until I see my Endo in January.

[Lisa254 in reply to Inafunk63]

Hi inafunk, eek that must of been so scarey for you, I'm glad your tests all came back ok.

I don't have any experience of being on ptu but I am now into my 5th month of being off carbimazole (I'm on no meds at all) it's only been this last month or so that I have really felt I am now recovering.

I still have some weird feelings in my brain from time to time like I can't concentrate or the top of my brain has been shave off or there is string being pulled through my brain (ur probs laughing weird huh) and I do have groggy brain foggy mornings (no where near as bad as before but the dizzy feeling has gone) and I am having to relearn to trust my body again but I am nearly there.

I am back excecising, socialising even had a few alcoholic drinks 😂. I do think this medication (or the thyroid disease) messes with your mental well being and it's a bit of a long road to recover but I feel so much calmer now and my anxiety is very mild so I'm thinking more time and I'll be back to normal.

I read a blog online about a lady coming off carbimazole she said it took her 6-12 months to feel normal and she had to work on her mental health and learn to trust her body again which I could really relate to. I have never suffered with mental health issues in my life.

But it does get better when I look back 3-4-5 months ago I was a quarter of the person I am now and the symptoms do fade.

I did the same as you diet wise but now I eat what I like but I have stayed off gluten and try not to eat to much sugar as I have found it gives me a groggy head the next day!

I hope it goes well for you, you may feel like you have hyper symptoms coming off I had a few moments where I got my bloods done as I thought I had gone hyper again but it was just side effects of coming off, but listen to your body and get checked if you feel necessary.

Good luck 😊

[Inafunk63]

Hi Lisa!! Wondering how you’ve been getting on lately?? I have started feeling like myself again, now med free since December. I still have days where I don’t feel fantastic but I feel a can trust my body a little more each day. It has really left me with what i can describe as some sort of ptsd because although Ive had a lot of tough times in my life, the feeling that I was losing my mind really scarred me, especially the fact that no one would listen or take me seriously! but I’m just working on looking after myself. Have you been keeping well?? Getting back to normal??

[Lisa254]

Hi Inafunk63 im so glad your feeling more yourself, that’s such great news 😊😀

I’m doing good thank you, I am now 8months off the meds and it has been a bumpy old road with side effects but what you have typed is exactly what I’ve experienced (scary loosing your mind and no one listening) it is like ptsd ( I saw a few cbt people who pointed it out) it left me with such bad health anxiety too but learning to trust your body again is a massive mountain to climb and you need to take little steps and keep doing it again and again...but I think I’m nearly there. My life has slowly reopened back to what it was I’ve been back at work nearly 6 months now, I’m back running and pushing my body now I no longer feel like I’m going to self combust (heart palps) from just sitting on the sofa when I was on carb 😂..still finding my feet socialising again but i promise it all gets easier and I feel so much lighter and I actually want to do things now ... I can’t explain!! Hypnotherapy and just time really helped me to gain that trust, you will start to notice the not so great days get fewer and when u have a down day it’s not as bad as it used to be!!

I hope it continues for you, i wish u well it does get easier 😊

[Inafunk63 in reply to Lisa254]

Thanks for your lovely reply. Im glad your keeping well also! Hopefully it’s all up from here for both of us! 🤗😁

[Lisa254 in reply to Inafunk63]

Yes positive thinking Onwards and upwards from now on 😊 shout me if u need ... it is hard work but it’s worth it !