Carbimozole and sleep apnea?

[JackieOR]

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

[shaws Administrator]

Welcome to our forum,

Sleep Apnea and Hyperthyroidism and two separate autoimmune conditions. Usually when we have one autoimmune we can develop others, unfortunately.

With hyperthyroidism I don't think it's wise to stop your medication without discussing it with your specialist/doctor. Even though you feel much better you may be doing damage to your organs etc.

In the meantime this is a link which may be helpful

thyroiduk.org.uk/tuk/about_...

I have hypothyroidism but others who have/had hyperthyroidism will respond.

[JackieOR in reply to shaws]

Thanks for your reply. I have read that, and although I started off with all those symptoms, I very quickly stopped having any of them.. All my current symptoms are exactly as explained having an under active thyroid, which, apnea and anemia can also be linked to.

[JackieOR in reply to JackieOR]

Oh I should add, I have seen lots of the internet, research reports etc., for the link between an under active thyroid and apnea. But I cannot find anything about people taking medication for an over active thyroid, or possibly over medicated, and suffering apnea. For other words, taking Carbimozole and apnea, and what could be a potential risk of continuing taking Carbimozole when apnea symptoms start.

sorry, it's hard to make myself clear,.. it's so messy all of this.

[shaws Administrator in reply to JackieOR]

Hopefully another member whose had your experience will respond and have you had a recent blood test to know the exact whereabouts of your results/ranges at present.

[JackieOR in reply to shaws]

Yes, my blood test of the 1 Dec showed my TSH at 2.4, which, being normal, they did not test the T3 and T4

[shaws Administrator in reply to JackieOR]

Most of us feel better when TSH is 1 or lower. Dr Toft who was President of the British Thyroid Association says:-

The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range – 0.2-0.5mU/l.

In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l. Most patients will feel well in that circumstance.

But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

[JackieOR in reply to shaws]

Oh thanks for that. I think I will see if I can speak to the lady GP I spoke to previously, and see if she will discuss the block and replace, instead of the blocking alone method. Cause I can't live like this, I can't function.

[shaws Administrator in reply to JackieOR]

I'm sorry and understand how frustrating it can be once diagnosed, (whether Hypo/hyper) when we have all these horrible symptoms and want relief. Unfortunately, it seems to be trial and error for many of us before we, gradually, get to a place where we have improved to the point that we can carry on as normal.

When doctors say 'normal' regarding bloods it usually means anywhere in the 'range' and stop increasing meds as we are 'normal' which might not be the case if we still have symptoms.

I hope you feel better very soon as everything is 'gradual' till we get to that point.

Regards

[JackieOR in reply to shaws]

Thank you very much for all of that. I'll resume my Carbimozle and Propothingies meds again today (might snap them in half to 10mg though - only 5mg short of 15mg the GP told me yesterday to take), and see if I can make a telephone appointment with that nice GP I spoke to previously on Monday .. If apnea kicks in again though I'll have to stop taking them again until I can speak some one. Fingers crossed x

[gabkad in reply to JackieOR]

It's likely the propranolol causing the OSA. See about reducing that and check blood pressure and heart rate after doing so.

Medications That May Worsen OSA

CNS depressants such as opiates, benzodiazepines, barbiturates, older sleep agents, and alcohol can actually worsen OSA by adversely affecting the control of ventilation during sleep and making the upper airway more easily collapsible.[37,38] They are an additional threat due to their muscle relaxant properties.[37] Other medications such as propranolol, a beta-blocker, and sildenafil, an erectile dysfunction medication, can also worsen OSA.[38] Therefore, pharmacists should review medication profiles for those patients with OSA since there are few pharmacologic treatments available. Pharmacists should recommend discontinuation of medications that can have a negative impact on the treatment of OSA.

[JackieOR in reply to gabkad]

Oh, that's interesting, thank you.. I never considered the beta blocker on its own

[gabkad in reply to JackieOR]

Well, when you wrote that your tongue swelled up, to me that indicates cardiac function is not adequate.

[JackieOR]

Thank you. I thought as much.. searching for apnea alone on the internet and it points to hypo as a possible cause, and I've never ever had that experience before.

[adin]

Yes, the OSA and hypo are linked because the tongue enlarges in volume and obstruct airing while you sleep. When I became hypo(on levo too) I had the same apnea symptoms. Cpap machine helped me a lot and the apnea symptoms is gone. It would be a good idea cut down the carbimazole.

[JackieOR in reply to adin]

Thank you so much. All these responses are really empowering

[Smvs]

Wow, you've just written to the story of my life since May. EVERYTHING, down to the craving ice and peanuts, sleep apnoea, tongue to big for my mouth...

I started on 30 carbimazole in May and within 4 weeks it levelled out my bloods, doc reduced to 20 but within 2 weeks I felt terrible so next visit he out dose back up. What I didn't realise was that I had already gone hypo. Endo appointment in August was cancelled until September, by this point very Hypo had to come off carbimazole for 1 weeks then restart on 10 mg.

Well, endo didn't believe me when I told him I could actually feel my thyroid kick in again during the week off. Now I am on 5mg and clinically my thyroid is perfect, he actually got annoyed with me when I insisted it wasn't. The endo only became interested when I told him that I was extremely paranoid about being in the house on my own, severe bloating, Throat actually feels swollen inside despite my thyroid being smaller than normal etc and ordered all blood tests - coeliac, cortisol etc plus a thyroid uptake scan all booked within 3 days. All bloods clear but thyroid scan confirmed graves. He's now saying that thyroid is fine but my body is lagging behind and will take time to behave like my thyroids fine because it's been running on hyper for so long (I'm sure it's been several years).

My husband is now freaking out because not only have I started snoring, but I stop breathing as well! Never put this down to carbimazole so I will definitely mention it next time.

My gp expected me to manage my own medication depending on my symptoms and was quite shocked when I didn't change dose between visits. However, my endo would be quite shocked if I even considered it, and for now I have decided to see if my body catches up with my thyroid in the next couple of months. One treats symptoms, the other blood tests!

You can always go back to your nice gp and ask for a referral to another endo, someone recommended? Or you can stick with your nice go and they could advise you on natural therapy and support you with blood tests. Either way, you cannot be hyper as this is actually quite dangerous to your body, and being hypo is no fun, so you need to be monitored more often and dose changed until you bloods sort them selves out.

It sounds like you were kept on the high dose of carbimazole for far too long and went very hypo and now you've stopped the carb your thyroid is kicking in making you feel 'normal'. Problem is you are probably very used to running on Hyper so this feels normal to you! Why don't you start back on a much lower dose then tell them if your next blood tests come back ok?

My daughter had a brain tumour at 18 months so I know how hard it is coping with children with special needs, so I hope you get sorted soon. There is no way you will be 'struck off' and left without a doctor for you or your kids, if your gp gets shirty, move to another one (hassle, but may be worth it). X

[JackieOR]

Thank you so much for your response The good news is, as somebody highlighted the effects of Propronolol/Beta Blocker, I had another look at the side effects of that alone, and after speaking to the nice GP about the beta-blocker, it was agreed I come off that completely (there was no reason for me to stay on it anymore anyway as my thyroid levels had normaled out, and we had reduced the beta blocker already).. after a week of coming off that, ALL those horrible symptoms vanished, and apart from dealing with the extra weight which I am not use to, I actually feel 'normal' again!!! Once the Xmas break is over I plan to slowly (very slowly!) work on getting some muscel strength back and weight down gradually ... It looks like the beta-blocker was not for me, and they've made a note of that on my records now .. sadly our GP will be closing down (this new contract thing, they decided as so many GPs are leaving anyway, they are not applying for the new contract.. so sad! Will have to hunt down another GP surgery in the new year and I've been warned that some are already full..