Told to stop Carbimazole after only 5 weeks by Doctor is this right?

Hi, after 8 months of feeling not myself with a 2st weight loss, panic attacks, anxiousness, mood swings, tearfullness, tremors & feeling like I'd lost control of my body I was 5 wks ago diagnosed with Hyperthyroidism, I got my results over the phone after blood tests,& was going on hols the next day so Doc prescribed 3 x 5mg of Carbimazole per day & said as a surgery they don't usually treat & has referred me to an Endocrinologist. I have felt gradually better and put on 10lb had further blood test last wk at Docs & been told my level was 29 (not told what level this was!) but is now 19, Doc said normal range was 9-19 (presuming this is T4?) but I've read that normal T4 is between 4-12.5 Doc said I can stop taking the meds but keep Endo appt - this isnt until 14th June so am now concerned if I stop taking and Doc has misinterpreted the results (they admit don't normally treat at surgery) I will go back to where I was 5 weeks ago - any advice greatly appreciated - Thankyou :)

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  • Ranges vary from lab to lab so you must use the ones from your lab, dont compare your results to other peoples unless your tests have been processed at the same lab, so your gp is probably right but ifyou get a reoccurence of your symptoms before your endo appoint just go back and see your gp x

  • Totally agree about ranges.

    It is quite common for hyperthyroid patients to start on a fair dose, then drop to a low dose. For example, start on 20, then drop to 5 when the thyroid hormone level comes into range. Sometimes they need to take the lower dose (whatever that ends up being) for many months. But the course of hyperthyroidism tends to be unpredictable.

    All too often, we see people posting that they have gone from severely hyperthyroid to significantly hypothyroid because the carbimazole dose has not been reduced in a timely fashion.

    Be careful and if you feel that you are going hyper again, get straight back in touch and ask to be tested and allowed to take the carbimazole again - maybe at a lower level?

    I am definitely not a good source of advice on hyperthyroidism but wanted to point out some possibilities.

    Hopefully some people with personal experience can also answer?

    Rod

  • Sorry I've done my reply as an answer to the question please see below - doh! Lol!

  • No problem!

    Please simply try to be aware of yourself and do not hesitate if you feel the need to do something about it.

  • Will do now I know what the problem is and the symptoms I will be back at the Doctors if the recurr for definate - Thanks for your help and advice.

  • Thankyou will monitor myself have stopped taking but still have a supply and Doc said to get bloods done if feel a recurrence just don't want to go back to square one :)

  • Thankyou - I still have a supply as the Doc represcribed before my results were back and said would leave me a blood test form at the surgery if I felt I needed it, just don't want to go back to feeling how I did for those previous 8 months, I have stopped taking and will monitor how I amover the coming weeks - thankyou for your help :)

  • Hi

    Being hyper is always dealt with by an endo becasue GPs cannot deal with it.

    You should contact the endo department where your appointment will take place and ask their advice. It is not usual to start and then stop carbimazole in such a short space of time.

    You should contact your GP and request your blood results and post on here. You need to know your TSH and T3 too. Plus request an antibodies test, and enquire about bloods for vtiamin D, B12 and iron/folates. Keep a record of your symptoms in a diary and keep copies of all blood tests. Also make sure you have a blood test a few days before your endo's appointment or else they will no doubt take one on the day and fob you off until the results come back.

    I hope this makes sense and helps.

  • Yes all makes sense thankyou, I'll ring the surgery tomorrow and try and get the results - if I can get past reception lol! And then post on here, tbh felt a bit fobbed off by the Doctor as they mentioned a scan of my thyroid initally then said they'd let the Endo deal and last time I went she didn't ask me any questions apart from tell me to see the nurse and get my bloods done again - just concerned as my Endo appt is so far away (diagnosed 4th April) that don't want to go downhill again and have to restart all over again.

  • Hi rang surgery spoke to different Doctor - the only levels he had were T4 was 29 now 19 and TSH was under 0.5 and now 0.05 discussed fact concerned that coming off completely was worrying me and he agreed I should recommence on lower dose of 2 x 5mg day and get blood tested again in4 weeks - 1 week prior to Endo appt so hopefully this will keep me ticking over til then sounds ridiculous but only been off it 2 days and already feel symptoms coming back is that possible? Thankyou for your advice and help.

  • I was at 19 too after 5 weeks but my TSH was still suppressed. It's clear that you respond very well to Carbimazole and that you may not have Graves. Nevertheless, the endo will have to determine the under-lying cause of your hyperthyroidism to properly adjust your treatment. Stopping so soon is insane, cutting to 2 tablets seems appropriate.

  • Thankyou feel much better after being on this forum helps to discuss with people going thru the same thing and know your'r not alone :)

  • Yes all makes sense thankyou, I'll ring the surgery tomorrow and try and get the results - if I can get past reception lol! And then post on here, tbh felt a bit fobbed off by the Doctor as they mentioned a scan of my thyroid initally then said they'd let the Endo deal and last time I went she didn't ask me any questions apart from tell me to see the nurse and get my bloods done again - just concerned as my Endo appt is so far away (diagnosed 4th April) that don't want to go downhill again and have to restart all over again.

  • I had similar issues when I got diagnosed in May 2011. Did not see an endo for a couple of months. They are generally rubbish too though!

  • Oh no was hoping they'd get me sorted - maybe I'll get lucky and get one that knows what they're doing!!

  • Hi! I have Graves, in my experience it is normal for T4 to drop quickly once you are on Carbimazole, although yours seemed to drop in record time, maybe your starting dose was too high? You must get under the care of an Endo as what they try to do with the meds is get your TSH levels back up, and this happens much more slowly than T4 dropping (hope this makes sense). That's why a lot of us end up hypo, because the Endo is focused on the TSH. People are usually on the meds for 1 year to 18 months, at least. Another thing I would say is that I had to wean myself up and down from carbimazole, big changes in dose in one go had a dramatic effect on me.

    You are right to be worried about going hyper again, if you feel it coming on go straight back to your GP and insist on a blood test. I hope this helps.

    I have private medical insurance and have monthly blood tests, but this still wasn't enough to stop me going hypo at one point. I'm on the right dose for me now, which is 5mg, but it's taken me 9 months to get here. I also have a B12 deficiency - when you see the Endo make sure he tests you for vitamin and mineral deficiencies and anaemia as well. There's some good advice on this elsewhere on the forum I think.

  • Hi rang surgery spoke to different Doctor - the only levels he had were T4 was 29 now 19 and TSH was under 0.5 and now 0.05 discussed fact concerned that coming off completely was worrying me and he agreed I should recommence on lower dose of 2 x 5mg day and get blood tested again in4 weeks - 1 week prior to Endo appt so hopefully this will keep me ticking over til then sounds ridiculous but only been off it 2 days and already feel symptoms coming back is that possible? Thankyou for your advice and help.

  • This sounds much more sensible to me. All the best.

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