Why do I feel ill

HI Buddies, while waiting to see Endo. I have been prescribed 40mg CMZ and beta blockers. For the last three weeks I have felt better and thought that maybe I would be fine. Suddenly I do not feel well at all, some of the symptoms back again for no apparent reason. What did I do to cause this change please? Also, are there any vitamins or potions I can take to help myself, After reading all the help and wonderful advise you give to so many very poorly people I can only thank you. Val

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  • What is CMZ and what reason were you prescribed betablockers?

  • HI Nanaedake,

    I thought CMZ was short for Carbimazole. I take them as I have been told I have elevated levels, my thyroid is overactive with nasty symptoms. Waiting to see Endocrinologist.

  • I'm 7 weeks in, on the same meds as you. I found the symptoms I had at first came and went, last week I started to ease off the beta blockers and I'm now down to 20mg a day. I've still no energy but I am back a work - so I've definitely more energy than before. I started gluten free two weeks in and my previous bloating has disappeared. Go to your gap if you are worried. Big hug.

  • 437jd, many thanks, It appears that our body is not stable then with this problem.. Do you take anything to help get well apart from the meds from doctor. Val

  • No it's definitely a roller coaster! I'm seeing my endo tomorrow and although he's nice enough he's very matterof fact with me. I want to ask about a testing my vitamin levels as I've heard Graves can effect them. Not sure I'm brave enough to ask! I'd never heard of graves T3T4 or TSH until 7 weeks ago ! 😵

  • Hi 437jd if you get nowhere with endo regarding getting vitamin levels checked you can get them done privately from medichecks or blue horizon, alot of us on here go down the private route for vitamin bloodtest as gp's don't always want to do them they don't seem to understand how they can impact our health when we have thyroid problems especially if you have stomach problems eg: bloating or reflux which is very often caused by low stomach acid this can cause us not to absorb the vitamin's properly and we need our vitamins at optimal levels. Hope this helps.

  • Thanks Raventhorpe, I didn't see your reply until I'd posted below. Sounds daft but how do you have a blood test through these companies? Is it a thumb prick test? My bloating has significantly reduced but is this my gluten free diet or the meds working perhaps? I'm not 100% sure, stomach discomfort, down my left side , especially after eating was one of my earliest symptoms. It's definitely worth investigating.

  • I think it is essential to enquire about the whole range of vitamin tests.

    Do not be afraid of asking.

    Don't worry.

    xx

  • Hi 437jd, good luck with your requests for vitamin tests. I go to endo tomorrow 15th. And I will ask for them as well. This is the first visit so I am a bit apprehensive about it. I will let you know how he is about tests. Be kind to yourself, I find a bunch of flowers works wonders. VAL x

  • Hi Vbgr he said it's not something they did. I'd be interested to know if your endo agrees to do it for you. On the plus side my levels have dropped again, so after today's blood test results I'll be starting block and replace soon. Good luck with your visit, hope it goes well. I've always been a busy person but Graves has shown me that relaxing is something I've got to get used to doing x

  • I'll be seeing my gp soon might ask him !?

  • Don't worry about not seeing my post. I think it's worth asking your gp about getting vitamin's checked they won't do all of them but they might do some, ask for ferritin, folate, b12 and vit D, they probably won't do vit D as they rarely do that one.its easy to order private bloodtest just go on line and put in medichecks or blue horizon these are the ones most of us use on here they are both really good. You order the bloodtest you want, the one I had was thyroid 11 does t4/t3,tsh all the vits and antibodies. They send you the kit with everything you need in it. You do test early morning ,fasting.you prick your fingers with the prickers that are in the pack you probably have to do three pricks on different fingers and fill little bottle up with blood and then post it back to them and they give you results about 48hrs after they have received pack.you can elect to have blood drawn at extra cost if you want.

  • Thank you Raventhorpe. You've explained things really clearly. I'm the sort of person who needs to know exactly what's happening or going to happen, otherwise I tend to worry. I might just go with the private testing as it will be quicker. I wouldn't have thought about vitamin testing without this site and considering I didn't get any information from the hospital I feel people like you, help everyone whether they're posting or just reading the posts. Thank you again🙂

  • Vbgr,

    Carbimazole is very effective at stopping your thyroid from making any thyroid hormone. When you start taking it, your manufacture of thyroid hormone drops almost immediately.

    However, anyone who is seriously hyperthyroid will have lots of stored thyroid hormone - in their thyroid, in their blood (largely bound to proteins), etc. Once your thyroid is not making more thyroid hormone, what is already there starts to get used up.

    Trouble is, once your thyroid hormone levels drop towards a more healthy level, there is nothing to stop you going flying straight past the good point, and heading right down into being hypothyroid.

    We see this time after time. Typically two to four weeks after starting carbimazole but it can vary. At this point you (or your doctor) can choose two different routes. First, reduce your carbimazole and try to balance the dose so that you make just enough thyroid hormone. This can take some time - and you would typically end up on something like 5, 10 or 15 milligrams a day. Or keep your carbimazole high and take levothyroxine as your source of thyroid hormone.

    What should never happen is that you are left to find this out for yourself on a patient forum. It should have been properly explained to you. And when it happens you should have an immediate appointment to review and decide what to do. It is almost as predictable as night following day - just the precise timing isn't so accurate!

  • Thank you for the info Helvella, I have seen endo. He was very nice and took bloods. Also said I should have a U.sound which I had the next day. Radiologist said I have a multi nodular goitre that has gone below the bone. Nothing look suspicious though so I am relieved. Asked doc if I could have vitamin test and he said yes . Appointment tomorrow. Today I feel better as I don't have to take beta.b perhaps now is the time to think of reducing CMZ to 20 a day? The endo took my bloods and told me to see him in three months, I suppose he expects me to take 2 x 20 CMZ till then. What would happen if I don't do what he tells me to do?

  • I'd much rather others who actually have experience respond here.

    My personal view is that three months is too long - but you are likely stuck with that. :-(

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