Hi I had a blood test after taking carbimozole for 4 weeks for overactive thyroid.I have received a letter from my gp today saying there is

No improvement so I need to see him on tuesday to alter my medication not sure if he means totally change or just alter dose(I am currently on 20mg a day).I am a bit confused as I thought it took at leadt a month to work anyway as we have to use up what is stored already in the body.Could anyone throw any light on this.Thankyou

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  • Hi

    Have you got the latest bloods please with the ranges..? This might help people to better understand what doc might mean..

    Thanks

    L

    x

  • Hi thanks for your reply the only result I know up to now is my tsh is 0.02

  • Thyroid Manager suggests that the first phase is around 4 to 6 weeks. Is it possible that this test was done a touch too soon?

    thyroidmanager.org/chapter/...

    However it is also possible that a higher dose is required.

    Are you taking split doses? Or once a day? Quite a number of sources suggest that split dosing is more effective as the carbimazole does not remain active for very long.

    The initial dose is in the range 20mg to 60mg, taken as two to three divided doses. The dose should be titrated against thyroid function until the patient is euthyroid in order to reduce the risk of over-treatment and resultant hypothyroidism.

    medicines.org.uk/emc/medici...

    Rod

  • Hi thanks for your reply I take the carbimozole in on dose

  • After a 6 month break my overactive thyroid condition became high again and I was restarted on Carbimazole at 10mg daily which I took in one dose. After 3 weeks I had a blood test and was advised to increase the medication to 15mg daily. As this is supplied in 5mg tablets I now space the Carbimazloe out and take it morning, afternoon and evening after reading the information earlier on the link that Rod has passed on to you.

    It makes sense and so I thought it was worth a try. Good luck with your doctors appointment on Tuesday p1pp1ns xx

  • Thanks for that glow42

  • I started last December on 20mcg a day, had my first blood test after four weeks and while the T4 had come down the TSH was still the same. My. Results go straight to my consultant so I got a letter from him to say to double my dose to 40mcg. I did that from early January until I had my first endo visit at the very end if February, by that time I had become quite hypo and was told to stop the carb for 'a few days' and start levo right away. I started on 50mcg of that and worked up to 75/100 on alternate days.

    Are you seeing or due to see an endocrinologist as well your GP?

  • Hi yes I am having my first endo visit on jan 16th.my tsh is still the same as before I started on carbimazole but dont have T4 result yet.Did you remain hypo then or did you eventually go back on carbimazole? Thanks for your reply I am new to all of this only been diagnosed 6 weeks so any info is helpful

  • No, I just had to stop the carb 'for a few days' as the guy said. I asked how long was a few days, this was on a Thursday so I said I wicked start it again on the Monday and the guy said that would be fine. I took my 50mcg levo the next morning then started the carb and levo together from the Monday. My hospital treats with block and replace. Some hospitals titrate, think the end results are the same really.

    If you start taking levo you need to make sure you take it on a completely empty stomach and with a big glass if water and well away from anything else. Don't have it with milk to tea or that sort of thing. Some people on here take it last thing at night but even though I would have preferred that I felt better when I was taking it in the morning.

    My pharmacist said to take vitamin c when I was taking Carbimazole so I take two slow release capsules every day even though I stopped both levo and Carbimazole in November - I am hoping I am in remission. Fingers crossed :-)

    I also take CoQ10, sublingual vitamin B12 Methylcobalamin because although I was in the range for that I was very low and have a family history of pernicious anaemia

    By April I had come 'within the range' but I didn't feel really good until my TSH was below 1 and my T4 was well into the upper part of the range.

    I felt so incredibly ill to begin with, heart pounding like it was going to pop out of my chest, I was breathless, really anxious and stressed, the shakiest hands ever. It was awful I used to have to sit down in shops like an old lady.

    In the end I treated myself like the invalid I was and got masses and masses of rest and only did things I wanted to do but I was fortunate in that my family have flown the nest and my husband was prepared to cook for us.

    Make a list of questions to take with you when you go to see your endo or you could even take someone in with you to make notes of what is said. Also try and get your blood test results with the lab ranges - that is how I know whereabouts on the range I feel good.

    You probably feel awful just now but there is light at the end of the tunnel. My first question to the group was 'will I ever feel good again?'

    Liz x

  • Thanks for your reply Fruitandnutcase it very helpful.I did ask the receptionist for a printout of my bloods and she said oh we dont usually do that! I have been unwell for about a 18 months sweating, feeling hot, anxious, heart pounding, insomnia, severe fluid retention(I have gone up 8 rong sizes) and dry sore eyes.My doctor put it all down to menopause.Now at least I know the reason fot it all.However because of all these symptoms so callef friends I havr discovered think I am a hypocondriac! I have been upset by this and now dont tell them even if I feel awful I say I am fine.Thats why I joinef this forum to contact people wh understand.I have so many commitments and find it hard to say no.I am not very confident or assertive so probably a good idea totake someone along with me to see endo.Thankyou again for replying.take care kim x

  • I have lost friends too, several others on here have found the same. I got so intolerant that I could no longer ignore things I used to just let go and of course that upsets people. I could have grovelled but I couldn't be bothered in the end.

    If you have gone up ring sizes have you put weight on all over? I lost a load of weight by the end but I have always been the chunky side. The weight loss was great although because I looked really good people didn't think I was ill which was a downside too.

    I think thyroid problems can make you appear like a hypochondriac, in fact I think if GPs see people coming in with a range of symptoms - especially women of a certain age - and thins that they are dealing with a real hypochondriac then they ought to check out the person's thyroid. I saw a doctor in August who looked at me like I was a total nutter and said I was needing a holiday!

    By November I had nearly killed myself in the car one Tuesday night, saw the doctor next morning because I KNEW I was not right, had bloods on the Thursday and got a phone call telling me to collect my Carbimazole and I would be going to see an endocrinologist etc on the Friday.

    So some hypochondriac! When I look back I had all sorts of symptoms over a period of time, I had thought for ages that I must have had some sort of autoimmune problem because I never felt good but knew it wasn't lupus or Sjorgens - never even thought of thyroid even though I had been told many years ago that I was borderline overactive ( I was being checked out because my body was behaving like I was under active - weight gain, tired etc ) so I bet I was looked on as being a bit of a hypochondriac.

    I got my first print out of results very easily but next time when the receptionist went to print them off they weren't there! Even when I asked the doctor last time she had to go somewhere else online to get them. Hospital and GP share records but it looks like the GP shares more than the hospital does. Some people on here have a lot of difficulty getting their results and have to pay, others have no difficulty and a load are in between but get them in the end.

    If you take someone with you you can ask your endo for your results (with lab ranges) and get the person with you to write them down. I usually just write them down myself, I make the headings of any tests I have had in my notebook before I go so that it is quick to do and I know what the lab ranges are likely to be but I just double check at the time. I am always tempted to whip out my iPad and do it on that but if anything went wrong and it didn't work I would look an idiot so pen and paper it is.

    Friends and family generally have no idea of what you feel like with Graves, they say they do but they don't really.

    My younger son who lives abroad was funny because when I told him, he must have googled as he came back and said that was what Missy Elliot had so it was really good that he knew from her.

    Sorry to ramble on but good luck. Liz :-)

  • Thankyou Liz, I have gained around a stone in weight and look puffy.Loosing weight is the only symptom I havnt had and the one I would welcome! I will have to see if it is graves or not as all I know uo to now it is very overactive but I suppose this is something the endo will look into.My daughter whose only in her twenties has auto immune arthritis so it is possible my prob could be auto immune too.Will let you know when I have some info to shareThankyou again x

  • Thanks, I'll be interested to see how it goes for you. Be easier if you haven't got Graves won't it although the treatment must be the same I suppose - don't know though.

    Shame about your daughter having it so young. I used to scribe for a girl who had RA when she was doing her A levels and couldn't write for long periods of time.

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