I was diagnosed about 8 weeks ago and put on 20mg Carbimazole and 30mg beta blockers. I am still having tests to confirm if I have nodules?
For the first few weeks I felt so much better, but over the last week I have stopped taking beta blockers (my Endo said I could stop taking them), but I have also been struggling to sleep.
It takes me about 2 hours to fall asleep, then I wake up after about 4 hours starving hungry, and not able to get back back to sleep.
Can I take sleeping tablets for one night? Any advice would be much appreciated
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Oopsy
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Having read your previous posts I am still wondering if you had anti-bodies TPO and Tg tested to rule out Hashimotos. With Hashi's you can swing from Hyper to Hypo. Docs don't have a clue - sadly. It has happened before on this Forum. ...
My recent blood test showed t4 14 (normal), t3 3.7 (normal), tsh is still 0.03. So I’m wondering if they need to lower the dose? I’m waiting for Endo to call me back?
Sorry - but normal is an opinion - without the range I cannot tell if it is optimal. The FT3 looks Low in the range to me. Still no Anti-bodies - TPO & Tg MUST be tested ...
Those results do not in anyway look Hyper .. it looks to me as if you are being treated according to the TSH.
My initial readings were t4 24, t3 6.9, tsh 0.01, so I think I was only slightly out of range. At that time I went to doctor because I was having night sweats, memory loss, irritable, no periods etc..
I’m waiting for Endo to call because I think the Carbimazole is now too high? I would see my doctor but feel like they know very little
For full Thyroid evaluation you need TSH, FT4, TT4, FT3 plus TPO and TG thyroid antibodies and also very important to test vitamin D, folate, ferritin and B12
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or vitamins
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.
All thyroid tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)
If TPO and/or TG antibodies are high this is most likely Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease). Though TPO and TG can be slightly raised with Graves' disease
Private testing for suspected Graves - TSI or TRab antibodies
Low vitamins are especially common with Hashimoto's and Graves. Food intolerances are very common too, especially gluten. So it's important to get TPO and TG thyroid antibodies tested at least once . Plus TRab antibodies is suspect Graves
Early stage Hashimoto's can easily be confused with Graves
Ah that’s brilliant. Thank you slow dragon. I think I would rather pay for a private test instead of relying on NHS. (I know they do their best but I want to feel better).
I don’t know what I would do without this site. Thank you everyone 😊
So I have booked a private gp appointment next week. Yesterday I self reduced carbimazole from 20g to 15g, and although I have a little bit of a headache, I slept much better last night, which has convinced me my dose is too high.
I was going to reduce to 10g because I am worried I will go hypo. Is that safe or should I wait to see gp next week?
My guess is that you are yet another member who has been wrongly put on Carbimazole.
I’m pretty sure they tested my antibodies, and said it definitely wasn’t Graves?
If they have tested TSI and TRab antibodies (the Graves) antibodies and it's not Graves, they have no business putting you on Carbimazole. This is why it's essential to get them tested before prescribing this.
Being only slightly over range for FT4 and FT3 and a TSH of 0.01 doesn't confirm Graves. I believe, like the other members who have responded, that you most likely have Hashi's and at the time of these tests you were either going into or coming out of a "hyper" phase. As mentioned, you absolutely must get TPO and TG antibodies tested. For the sake of your own health you need to get this sorted.
You have to know one way or the other whether you have Graves or Hashi's.
There are quite a few posts recently where a doctor has jumped to the conclusion that the member needs Carbimazole and it's not been the case. There was one being discuss yesterday, some of the information applies in your case
Thank you seasidesusie. I have been wondering if they have correctly diagnosed me because my symptoms don’t seem to be too bad since they put me on carbimazole, and I feel like I’m ready to come off them or lower my dose? I have to wait 2 months to see Endo and I can’t carry on feeling like this. Could I self medicate and drop to 15g? Or should I visit my doctor? (My doctor is quite helpful but seems to have a general knowledge rather than any specialist knowledge)
I can't tell you what to do with your medication, I've never been on Carbimazole.
If your doctor is helpful, what I would do in your position is to make a note of all the information and advice you have been given so you can discuss it with your GP. Don't mention "internet" or "forum" (they definitely don't like that) but you could say that you have been in contact with NHS Choices recommended source of information for thyroid disease (which is ThyroidUK) and they have advised that you need:
1) TSI and TRab antibodies testing to confirm Graves disease due to the fact that you have been prescribed carbimazole. They say this is particularly important due to the fact that you're pretty sure they tested your antibodies, and said it definitely wasn’t Graves, in which case you shouldn't have been prescribed carbimazole.
2) TPO and TG antibodies testing because it's possible that you have autoimmune thyroiditis (doctor speak for Hashimoto's) rather than Graves.
If your GP doesn't know anything about Hashi's, you can explain that "This is where antibodies attack the thyroid and gradually destroy it. The antibody attacks cause fluctuations in symptoms and test results.
When the antibodies attack, the dying cells dump a load of thyroid hormone into the blood and this can cause TSH to become suppressed and Free T4 and Free T3 to be very high or over range.These are called 'Hashi's swings" can give hyper type symptoms to go along with these results that look as though you are overmedicated. " And this is why you think there has possibly been a mistake, that you weren't actually "overactive" but rather that you were going through a "hyper" phase of Hashimoto's.
Hi oopsy, Marz is right docs don't have a clue, I too have hashi but also graves, when I was really hyper I struggled to sleep too but mine was for breathlessness and heart palps and body jolting, then later I was just so alert all night, personally I would not want to take sleeping tablets as you do not know what affect this has on the thyroid and impact on your heart, you could ask gp but if your gp is anything like mine he will not have a clue, I think its something you just need to ride out naturally, I know its hard but others may have a different point of view, but sadly nothing happens quickly with the thyroid.
Its worth getting your gp to run the auto immune disease blood tests.😀😀
Its a nightmare, hyper swings, exhaustion, memory loss, feels like the start of a flu virus, my thyroid swells up and down and makes my throat and neck tight with breathing short until it goes down. It usually lasts around 2-3 days and it can happen anytime. I am celiac so I follow a gluten free diet and soya free as this does lessen attacks slightly.😀🌟
I don’t really get memory loss and stuff, sometimes I feel a bit hyper (and usually get a bit giggly and silly!), but the main problem is the sleep.
I will have 4-6 hours sleep for a few days, then I feel exhausted so will have about 7-8 hours sleep, but I keep waking really early which is not great when you work shifts ☹️
Think I would avoid the sleeping tablets. I totally blacked out the bedroom, husband hated that so he moved into the spare room for the night and we get together in the morning for a cuddle. We’re both in our seventies - don’t know how that would have worked had we been a lot younger.
I found he would waken me with the way he breathes - it’s much faster than how I breathe and I found it very difficult to get back to sleep if I was woken up. If I wake naturally I usually drop off again quite quickly. Besides he liked the bedclothes to be a certain way and that kind of interfered with my sleep too.
As well as being totally blacked out I don’t have anything in the room that gives off a light - no clock, no radio, no TV. I don’t even charge my electric toothbrush while I’m sleeping as the green light lights the room up. So all that sort of stuff has gone. I don’t read my kindle or use my iPad before I got to bed. I’ve bought a pile of charity shop paperbacks to read when I go to bed.
I found when I was taking carb that something it helped me sleep if I ate a little something before I went to bed. Just a slice of toast or a cracker bread. There was a fine line between enough and too much though.
Lavender oil in a warm (not hot) bath of magnesium flakes helped. I also like Origins Peace of Mind peppermint lotion and even now if I do waken up and can’t sleep I keep it by the bed and put some on my wrists, elbows, and forehead and that always works.
I know where you’re coming from though, I feel absolutely dreadful if I don’t sleep well and when it was my husband who used to waken me I felt murderous! I’m sure I was just as annoying to sleep next to too.
I’m in remission from Graves. I was treated for a year with block and replace treatment and stopped it in 2013. I’ve not taken any thyroid meds since but I try to eat healthily, keep my vitamin D and B12 well up in their range. I exercise regularly and try to relax and avoid stress.
If I’m woke up suddenly by someone or something during the night I feel like someone has switched my brain off. It is a very odd feeling. Yet I’m ok if I waken as part of my sleep cycle as I just doze off again.
The Peace of Mind is expensive - I usually get it from a John Lewis - but boy is it worth it. I use it if I have a headache. I've seen me have the most pounding headache. Go to bed with peace of mind on, pull the duvet over my head and waken up feeling great. It’s amazing. I do the same with Vicks Vapour Rub if I have a cold and that works well too.
Always get your copy bloods!! You need a file to look back on from where you felt good, marz is right- do not settle for "you're in range!! You need to find where in the range you feel good at but your ft3 and ft4 are sitting in lower range at present, my ft4 is 12 but looking back ony notes when it was around 18 and my ft3 was around 5 I felt much better, we will only bring these levels up with a reduction in carbi each time, its so important to request bloods every 4-6 weeks, endos Luke to make you hypo as its less dangerous according to them but having been hypo myself back in December that's no picnic either.
Yes I went through the sleep thing too but my sleep loss was through my trembling and hypnic jolts most of the time,we are all different, its good you are able to work through yours as a year later I'm still not back at work but I was blessed with having the whole shabang of symptoms plus 3immune diseases😠 but keep on top of it and get your copies of bloods as you will get to know that sadly GPS and endos do not know enough about the thyroid, learn as much as you can about your own health oopsy, this site is great, I've learnt soooo much in a year from everyone on here, including the regulars on this page, slowdragon, Mars, fruitnutcase🌟🌟
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Carbimazole 
Carbimazole 
STOPPED SLEEPING help please!!! Sleeping tablets stopped working! ZERO sleep!!
Carbimazole
