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!
HELP
Carbimazole for life???
How quickly can you go to Hyper to Hypo and the related symptoms
