Hi all! I’m new here and have read loads of information so far but I’m feeling a little lost and overwhelmed. The brain fog doesn’t make it any easier. So a little back story, I was diagnosed with hyperthyroidism when I discovered I was pregnant 12 years ago. Where I lived at the time medical care wasn’t great and definitely wasn’t affordable (I know you’re thinking well your health is priceless but don’t judge until you experience. You can’t squeeze blood from a stone) Anyway, moved here to the U.K. four years ago, pregnant again, back on PTU, had my levels checked fairly regularly and just did what I was told by the doctors. Never did any research etc. I breastfed for 3 years and every time I went to the Endo they would question me about plans to stop breastfeeding to switch medication or have RAI. Eventually went back to the Endo for a regular appt and had stopped breastfeeding for a few months, had done a little research, decided against RAI and surgery because I figure I’d rather have a thyroid albeit a dysfunctional one, than not. At this point I was on 50mg 3 times a day. I’ll admit I would usually forget my lunch time tablets but I felt great. Well wasn’t that about to change! Endo changed me to 40mg carbimazole that day and it all started to go downhill from there. They never contacted me for follow up bloods and I just assumed I was to carry on taking them as is. Called for a new months prescription (then 3 months in) and my GP phoned back asking if I’d have my levels checked after switching because he didn’t see anything on file and they really should have been done after 4 weeks. I had been puttin off seeing the gp even though I was feeling increasingly run down and out of it but I just chalked it up to being summer and having the kids home from school and everything being hectic. I got those bloods back and my Gp said I had become very hypo (didn’t get those levels) and to cut my dose in half so one 20mg per day carbimazole. Well a few days on I swear I had a near death experience. I ended up in a&e with chest pain, disorientation, shortness of breath, I couldn’t think straight. It was like this feeling of darkness would come over me and nothing sounded, looked or felt right. All my tests in a&e were normal and I got sent home. Well this went on every single day for what felt like forever. I can not describe to you the feeling and the fear I felt. It was nothing like I’ve ever known and I’ve been in some pretty awful situations. There were a few things going on in my life but nothing near what I thought would cause me that level of anxiety to make me so ill but still when I went back to gp and it wasn’t my usual Gp I saw, she said it was likely anxiety and panic attacks but they did a full blood panel (she called it) along with another thyroid test. Everything came back “normal” they said. Still the shortness of breath went on, things didn’t look right, like I was there, but not really, terrified of everything, sensitivity to light, I felt like I was floating and still this weird blanket of darkness would cover me. I’d walk into a shop and things started to look strange and I felt strange and then I’d start to panic. I became obsessed with checking myself. How am I feeling, what am I feeling? Why does that feel like that? Why does that look like that? It consumed my every thought, still is. I can’t sit still because that’s when it’s the worst. I have to keep busy. I’ve always loved excercise (strength training with a tiny bit of cardio thrown in) I track what I eat to make sure I eat balances and enough to fuel me but I can’t focus enough now to care, I can’t strength train because I panic that I’m gonna hurt myself if I pass out because I feel so short of breath that it makes me light headed. So I had my Endo appointment one month ago (sorry this is long and I’m dragging but I don’t want to miss anything that could be important) I explained this to him and my mum told me how worried she was. I explained to him, im a single mum and have no help or relatives here other than my mum who works full time and I am literally afraid to be in my own home alone, I’m terrified of bed time because I’m terrified my kids will fall asleep and something will happen to me and no one will be there with them when they wake. It’s just awful. So he checked my latest tests which are as follows (these are few weeks after cutting down to 20mg carbimazole per day. I don’t have the levels prior to that)
Sept 6th
Serum TSH 4.36 (0.27-4.2)
FT4 16.8 (12-22)
October 2nd
TSH 4.16 (0.27-4.2)
FT4 14.4 (12-22)
Iron 13 (6-35)
Transferrin 2.56 (2.0-3.6)
Ferritin 35 (13-150)
B12 784 (197-771)
Folate 6.9 (>3.9)
I also had a few other tests done like liver function and electrolytes which I have results of if needed. So during this Endo consultation he said I’m still hypo but my levels are improving so cut down to 20mg once a day for 6 days, skip the 7th (Sunday). So I did this for 3 weeks and started to feel a little better (not great but a tiny bit better) by the end of the day I skipped the tablet, and then last week I accidentally forgot to take Monday’s tablet and that day is the best I’ve felt in months. I still didn’t feel fantastic but the shortness of breath had lessened and I didn’t feel so crappy. Well I rang and made an appointment which I couldnt get for 2 weeks so still waiting for that, because I will not take another carbimazole tablet. I contemplating stopping altogether but I’m not sure a swing back to hyper would be a good idea if that was to happen so I still had some PTU tablets left which I have started taking 50mg 3 times a day since Tuesday, so one week now...was that a terrible idea? I’m literally grasping at straws now but Still no shortness of breath, I feel a little better still but nowhere near normal. I’ve also started supplementing Vit D, A, C Magnesium and Selenium. I guess I’m looking for any advice/guidance on my levels and supplements and also any advice for when I go to my doctor in a few days? I’m going to request a T3 test also? Would that be right? This has made me develop like a health anxiety or something because I’m CONSTANTLY worrying that there’s something really wrong! To the point where I sit up at night crying that my kids are gonna be left alone. It’s horrendous. I suppose I’d also like to know if anyone else had these types of feeling due to thyroid complications?? I keep thinking my GP has missed something horribly wrong with me. I don’t know what to do anymore and I’m so overwhelmed with everything and I haven’t ever been a sit down and take it kind of person so I refuse to let this take over me. Brain fog is in full effect today so it’s possible none of this makes any sense but you have no idea how much I appreciate you taking the time to read!
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So, when you were diagnosed, do you know which antibodies they tested? TRAB or TSI?
You are, now, very hypo, as your doctor said, and that is probably what is making you feel so bad. Your endo should have instructed you to reduce your carbi slowly but surely, with frequent blood tests, so that you don't go too low. But, that's just how it seems to me, I'm not an expert. I have Hashi's, not Grave's.
I’m not sure which one of the antibodies tests it was I had done but the last time my antibodies were tested was when they had changed my meds to the carbimazole, (I think maybe it was in March) which I didn’t get the results for until a few weeks ago where he said I had still tested positive for grave antibodies. I don’t have the exact values of those tests. You see getting a copy of my latest tests from my GP reception was like actually pulling teeth! I didn’t have the patience to try and get any further back with her
Hi there, I have graves too, i was on 20mgs a day of carbimazole...made me very hypo to the point I honestly thought i was dying. I had turned into a crazy person and was so far away from being myself it was unreal. Endo dropped my doze to 5mgs a day and within a few weeks i felt like a totally different person. Back to being normal me! The doze changes and blood test are a roller coaster ride from hell but hang in there. Make sure u get your bloods checked every 6 weeks, get print outs and keep an eye on your levels. If i even get a hint im going hypo again, im straight to the docs for an extra blood test and on the phone to my endo to ask him to check results! It does get better. Xx
Going hypo from too high a dose of antithyroid can and does lead to anxiety. You were right not to come off your meds completely but idk about switching back to the old dose of PTU, can you get even a phone consult with your Dr?
Well I felt my absolute WORST about 20 minutes after taking the carbimazole up to about 5 or 6 hours later, I figured I was having a really bad reaction to it as well as being hypo. I just wanted to get back to how I felt before all this 😢 but it seems a common occurrence with this type of issue that people say “I felt like I was going to die” i really really did feel I was dying. I tried to get a phone consult but I want to speak to my Doctor who seems to be in high demand and you could get a call from anyone of the doctors available. The last two locum doctors I saw at my surgery said I had anxiety and I shouldn’t stop going to the gym and sent me out the door none the wiser, still in tears, still feeling like I was dying.
Hello.. I was also on the hyper roller-coaster and without the help of this forum and the advice given by Dr Elaine Moore, elaine-moore.com I do not know where I would be. My advice is go the the website: elaine-moore.com, join the forum, post your query as above. Elaine answers all queries on an individual basis and is truly a saint. I wish you the VERY best. With Elaine's help I am functioning normally and I know you can too. Doctors and endos over-prescribe carbimazole (I got caught out once by an endo who could have done terrible damage had I not stopped it after 10 days - I just did not know what planet I was on!!!). Then I found this forum and Elaine Moore. You too can be well.
I really hope you get the help you need soon. I have graves and I get panic attacks and anxiety. I am surprised that they didn't reduce your Carbimazole gradually rather than halve the dose. Take care x
I'm so sorry to hear that you are going through this. The Elaine Moore recommendation is a very good one - she was a life saver for me. I was diagnosed with Graves in 2009. Like you I opted to keep my thyroid as I figured it was my immune system that needed fixing and sacrificing my thyroid would just lead to more grief and a lifetime of Levothyroxine. It took me eight years to get where I am now (happily in remission) but I'd do it again. I was initially over-dosed with carbimazole and went hyper, more than once, so I recognise the Hell you are in. I couldn't drive on major roads or travel on trains because of anxiety, and the breathlessness was simply awful. My advice is not to make any big changes in dosage. I learnt from my mistakes and had a couple of relapses. Eventually I was telling my Endo how I planned to reduce my meds. Even going from 5mg to stopping sent me see-sawing. It took me almost a year to wean myself off carbimazole, which I did by very slowly, incrementally reducing the dose by a small amount every few months after a blood test. I bought a pill cutter and at the end I was taking 0.25mg every other day. Of course it could be that you cannot tolerate carbimazole. I didn't fancy the alternative drug so I stuck with it. Autogenics has also been an amazing in controlling my anxiety. autogenic-therapy.org.uk/
I kept up with the supplements too. B complex, magnesium, vitamin D and milk thistle to guard my liver against the effects of the carbimazole.
I never heard of milk thistle for the liver! Just for milk production during breastfeeding I think it was! I’ll have to pick some of that up! Thanks for your reply!!
Thanks everyone for the advice and replies. This has all felt so isolating cuz I couldn’t explain to anyone how I felt. Yesterday and now today have been my best days so far....still not great but better! I hope I keep feeling a little better every day. I haven’t done anything differently since stopping the carbimazole and restarting PTU. So I’m on 50mg 3 times a day. Before they had switched me to carbimazole I was on 100mg PTU 3times a day. I have a gp appointment on Monday and Endo appointment for early January. I’m kind of scared they’re going to make me go back on high doses of carbimazole or just refuse to write me a new PTU script. Based on the research I’ve done the risks of PTU and CARBIMAZOLE are pretty similar. Does anyone know why the preference seems to lean towards carbimazole? Is it just because it’s longer lasting in lower doses?? I’d rather have the inconvenience of taking pills 3 times a day than one pill that made me feel like I was dying within twenty minutes of taking it.
There can be a compliance issue, as the PTU dose typically needs to be split, whereas carbimazole can be taken all at once, but if you've shown you can stick to the prescribed schedule, this shouldn't be a problem. The reason for the difference is that carbimazole has a longer half life than PTU (it is effective over a longer period).
I understand your fear and obsession with your health. I've been there too. I cried hysterically for months, fear and anxiety for no outside cause.
This website will keep you from going nuts. Very supportive. I am now my own dosage doctor and feeling better. I have Graves and had my thyroid removed. I wonder if that was necessary but too late now. All my tests say "you are fine" when I am going crazy. Hang in there.
It is ridiculous how irrational my thoughts become! I’m really scaring myself. I can’t think straight, and when I do I can only think about why I can’t thibk straight, why I feel like I’m going crazy and why the floor always feels like it’s moving under my feet. 😖I’m exhausted with it all
I also suffered dreadful side effects very similar to yours from taking Carbimazole. The nurse at my GP surgery advised that it can take months for it to be out of your system.
I only took it for about 3 weeks. I came off it because I was so ill. It took weeks before the anxiety lessened. I am not on any medication now. Having blood tests again in 3 months. I've seen a naturopath and I'm taking a herbal remedy plus assorted vitamins and a probiotic. I would rather live with the symptoms than be on the medication.
I would agree with you! The terrible thing is that my hyper symptoms never bothered me. The doctors scared me into taking the meds because they said it would put too much strain on my heart cuz my metabolism always in over drive. I was always warm, but I lived in the Bahamas so no surprise, I had a tremor of my hands which never ever annoyed me, and I could live on very little sleep which definitely didn’t bother me. Now I just feel like I won’t get through the next five minutes let alone another day....
The Endo scared me into taking the meds too. with hideous side effects. Next time I saw him, I asked where I was on a scale of 1-10 (10 being the most severe). He said I was a 2. That's why for the moment I am not considering any of the treatments. I may live to regret it but only time will tell. I think I've probably had symptoms for years.
That’s awful. I think you’ve made the right choice. I had bloods done yesterday and honestly I’m leaning towards ditching all meds also. The last year and a half I’ve completely changed my lifestyle (not anything to do with this) and am genuinely wondering if the hyper has settled due to it and Ive just been taking meds pointlessly. I suppose it’s smart to wait for results on Monday though
Don't be embarrassed about being obsessed with your health. When I was learning about the endocrine system (because my Endo didn't have a clue) I went totally manic for about 6 months. Fortunately I had a GP who was equally interested in dose vs feeling well so he did as many blood tests as I needed so after 2 years of fiddling around and driving my sweet GP crazy I managed to get to the correct dose for me. So "go girl", open the books, sit for hours on end on the Internet and this site, once you understand it all you will feel well. You may have to get your own private blood tests at the beginning but the frequency of this will reduce to once a year once you are stable. Don't be shy to change your doc either if your current one doesn't have a clue, I am on about my fifth doc and I don't regret firing any of the early ones who were under educated, don't be shy to do this. It's a terrible struggle in the beginning, we all go through that but you can get out of the darkness. Some of us thought we were dying (like me) at some point, but we struggle through the hell, some times without the help of our docs. Don't give up, study, study and study, it will pay off.
I have posted in the Elaine Moore forum so just waiting to hear back. Thanks for that advice! I was feeling better the last two days and then woke up this morning and just didn’t feel right, it’s lasted all day and I’ve felt like crap again with anxiety heightening....when does it end. The ups are giving me false hope and then the downs are really bringing me down....further and further. Not a good day for parent teacher meetings 😖
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Updated blood test results - sorry!
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