Hi all.. please bear with me as I'm new to all this, and I've not had anything explained to me, and not been given a print out of my blood tests.. rather been kept in the dark and expected to do as I'm told without question I feel. But listening to my body, I just know something is wrong; I was given a formal diagnoses of having an over active thyroid in May 2015, and having a lot of antibodies appeared to be because of Graves Disease triggered by stress (I'm a single parent and carer of my two autistic sons, with no hands on support and outside support forever deminishing because of cuts) and put on 40mg Carbimozole and 80mg Prop(beta blockers).. they instantly felt like they were not agreeing with me, but seeing it takes 4-8 weeks to kick in I beared with it. My first appointment to see an Endo was suppose to have been in early August, but was postponed to September.. I couldn't wait to see the Endo to get things explained, plus, I was by September feeling really ill, although all the symptoms of over active thyroid had completely gone, and new symptoms were taking over; cramps, my periods return having them twice a month, I'd put on a huge amount of weight that my body was not coping with, I was increasingly feeling down and it felt like my stomach was bloated and like something was scratching my insides away.. everything was ceasing up.. I did try to tell the Endo but I everything I said was dismissed, as all she wanted to do was look at my August blood results, which showed my T3 and T4 were all back to normal but TSH was 0.01.. I was ushered out the room in 3 minutes and told to go get another blood test done.. I just stood in the hall and burst into tears. Every inch of my body was telling me my meds were too high, and actually, the blood tests done that September (although not properly disclosed and I'm very fussy these days I can't remember figures), those figures put me in complete normal range, but the Endo told me to stay on the high dosage and I wouldn't see her again until 21 January.. and I had no further instructions to have further blood tests done until that date.. which I thought was very odd, plus, no urine test was asked for, which I thought was dicey considering what the leaflet about Carbimozole stated. Not sure what to do, I did as I was told for another month, until the symptoms became so unbearable, plus, the muscle cramps were increasing, I couldn't stay awake, loss of appatite but still putting weight on, couldn't keep warm, and basically felt like every time I took my tablets I felt as though I was being poisoned (I can't describe it any other way than that) - I rang my GP and she was lovely and after taking more blood tests (and urine test this time) agreed with me that my dosage be reduced to 20mg Carbimozole and 40mg Proponwhateveritscalled taken once a day.. and, for a while, I seemed to pick up.. Until that is a couple of weeks ago and I seemed to be getting increasing symptoms of having an underactive thyroid, to a point that, I was craving ice and peanuts, which after pregnancy, I was well aware that that is a sign of being aneamic, but I dare not take Iron tablets as I was severely constipated already, plus I don't know if it's okay to take iron tablets or any supplements on these meds.. but more worrying, I was waking up from sleep gasping for air, which has never in all my days happened, and was very frightening.. and as I would almost without warning fall asleep during the day on more than one occassion (which being a carer I should not be doing!) it was happening during any time I slept, with an added worry I was getting very strange heart palpertation.. like, in slow motion (not like I had having an over active thyroid). I had another blood test due 1 December, so thought I'd wait to see what that came back as before bothering the GP, BUT, as I felt concerned about this apnea (worse case senario, but if I died in my sleep, I'd lie dead in my bed until somebody noticed I'm missing, as I know my sons would not know what to do so do nothing.. worse case senario though), so.. I stopped taking the meds, which yes, I know is wrong, but I didn't know what else to do.. but guess what.. not only did the apnea stop, but as I had to wait to speak to a GP (I got a different GP to talk to this time, and .. all he was interested in was my TSH which was 2.4, normal, and therefore no T3 or T4 given, but he said something about my previous T4 being high at 39 on my previous test, but did not explain what that meant, and didn't seem to want to talk about that.. and just kept saying I'm not under active and need to keep taking my meds, completely dismissing the apnea.. in fact, he almost sounded amused that I had apnea, and said its probably cause I'm over weight.. grrr).. He eventually and begrudgingly agreed to me reducing my Carbimozole to 15mg and has written a perscription to pick up next week.. I don't agree, I think I need to stop taking it altogether, it's clearly not agreeing with me, but feeling I wasn't being listened to just thanked him and hung up.. At the moment I don't know if I should try and speak to the other GP in my surgery that I felt did listen, or just phone them and tell them that I wish to try natural treatment to keep my thyroid in balance myself and cancel the 21 Jan Endo appointment (she'll only make me cry again..). Oh, I also noticed my tongue has become to big for my mouth, which looking into that indicated toxins in the stomach.. toxins being the meds I presume as it couldn't be anything else? I also read a few reseaches online about patients who were over medicated on Carbimozole when they were having symptoms of an under active thyroid, and the risk of causing bowel cancer?! is that the internal scratching sensation I'm getting :/ .. I have absolutely no problems with my eyes, and wondering, are antibodies high in the body because I might have some cancer going on that hasn't been detected? .. maybe not, .. but I do think that I may have had this thyroid problem for years undetected, as I started getting hives a year after my youngest son was born, and the GP dismissed it as an allergy but antihistermines did nothing, and I kept telling him that it only flared up if I had a period, or a temperature, so felt it was more linked to hormones not an allergy.. to which I got laughed out of the office.. Now I have always taken good care of myself, diet and exercise at a sensible balanced level, so could I have, for years, without realising it, been managing a thyroid issue naturally on my own? The only reason I went to see a GP in May was because I thought I was going through the menopause and my sister suggested I could benefit from a temporary beta blocker as I was under a huge amount of circumstantial stress :/
Since stopping taking any meds, which I know is naughty,.. I'm starting to feel increasingly 'normal'. with all symptoms slowly diminishing.
So, after all that blurb.. my question is - has anybody else developed apnea on Carbimozole? and has anybody else stopped taking meds, and what are the consequences? Will I get struck off? .. I don't actually care anymore if I do get struck off to be frank, as I would rather suffer with overactive thyroid and manage the symptoms myself, than be forced into an under active thyroid, with the health risks of sleep apnea and possibly diabetes 2! .. but I can't afford to have my sons struck off with their ongoing health problems.
What to do, what to do :/
Any help appreciated