The doctor put me on 15mg of carbimazole which resulted in a TSH of 119.29 min/L and I felt horrible no energy and breathing difficulties (I have copd) so instopped taking the carbimazole and my TSH went back to within the normal range
Recently after another test November 2022
TSH < .05
Ft4 14.6
Ft3 7.2
They wanted to give me 15mg again of carbimazole which after my last experience I refused and agreed to take 5mg and although this has put my TSH back to within normal TSH 3.7mui/L I feel horrible again no energy and my COPD symptoms have exacerbated again (very breathless) my question is does carbimazole affect my breathing? And if I stop taking it what are the repercussions?
NB apparently I have always had a slightly overactive thyroid (news to me) I didn’t feel ill at all until I took the carbimazole
Any insights into this would be appreciated
Thank you
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Lfox1
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You should be rechecked 6 weekly when starting carbimazole, is this how often you have your bloods are tested?
The TSH isn’t a thyroid hormone. It’s a pituitary hormone which signals the thyroid, low mean slow down production there’s enough thyroid hormone.
The higher the TSH the harder the signal to raise levels.
That’s if the TSH is responding & accurate. Often is isn’t. Even in health individuals it can have a delayed response..,, it just that health individuals would more stable levels. You need to focus in FT4 & FT3 & add the lab range (ranges vary)
these results -
TSH < .05
Ft4 14.6
Ft3 7.2
They look like FT4 on lower side & FT3 is high by most ranges, but only a little. Even a small increase is usually enough to lower your TSH.
You need antibodies tested to see if autoimmune condition is affecting thyroid. Hyper can be transient/ fluctuate.
TSH over 3 likely means thyroid levels too low. Carbimazole shouldn’t cause breathing issues, but being hypo can worsen breathing issues & lower energy.
Hi thank you for your reply it’s so hard to get anything done with the nhs over the years my TSH has ranged from .55 mui to 1.95 but that’s been taken irregularly 2007 to May 2022 when it was <.05 which is when my problems began. I also have a small goitre on the right side of my neck which I had a biopsy on but other than inflammation nothing sinister was found.
I don’t know anything about the thyroid and to be honest I find it a minefield. I have always had a very fast heartbeat due to my copd but they will insist it’s part of my thyroid problem. When they put me on 15mg in November 2022 I honestly thought I was seriously ill so when it came back at TSH 119 I said I didn’t want any treatment and to see how I went and it went back to normal, until last November 2023 I was reluctant to take any medication as you said the results were not to off. Now I feel horrible again. Do you think I could ask my. doctor if I can stop taking them and just monitor it? I’m supposed to have another test in three months but I can’t wait that long. The Carbimazole has the affect of slowing my heart rate but that gives me breathing problems. Sorry if I’m rambling.
Right sided goitre…… a swelling one side might mean “hot” or toxic nodule. This would cause hyper, including disproportionately high FT3 often at much lesser elevations than you’d see with Graves autoimmune. (Trab & TSI antibodies)
This might mean you do need carbimazole long term but at a very low level. Certainly not 15mg - Peraps as low at 5mg every other day or 3rd day.
Signs of inflammation however is more in keeping with Hashimoto’s- (autoimmune thyroiditis) which can cause transient hyper but ultimately low function with thyroid.
Both hashi & graves often have TPO & TG antibodies present.
My own history is of a hot nodule. Which was cleared by FNA, but abnormal function missed many years.
Obtain your results, which you our are entitled to.
If doctor can’t or won’t test fully there is option to arrange a private test.
Private testing:
Order a kit online and sample can be taken by fingerprick test, (extra fee for clinic visit / home visit venous draw) sample posted back & results available online often very quickly.
Sample recommended to be taken at 09.00, fast overnight, avoid biotin 3 days before test. Biotin has potential to interfere with tests.
See link for private companies with discounts with many packages & options.
Medichecks thyroid advanced is as good option. Includes TSH, FT4 & FT3, CRP (inflammation marker) TPO & TG antibodies. Also Important to test nutrients - includes folate, ferritin, B12 & vitamin D. Almost certainly affected with high / low thyroid & over treatment with carbimazole treatment.
You often make quicker progress when you have a complete picture at once.
Thank you I have on your advice sent off for the test including antibody test I have an appointment on 18/03 with my doctor so I will ask for the full test results as can only see TSH on previous results? I will also ask if they have nutrient tests I’m sure they did them on other tests. I will let you know my results thank you
Can you please share with forum members your original blood test results and ranges at diagnosis back in May 2022 detailing your TSH, Free T3 and Free T4 and there is probably a thyroid antibody result and range alongside this entry or within a few days of this first blood test results with antibodies detailed as :-
a TPO - TgAB - TRab - TSI - or words reading something like TSH Thyroid Receptor with a number / range:
Is this the same doctor who was happy to let you ' run ' with a slightly overactive thyroid or did any symptoms occur that prompted this new medication ?
Hi thanks for your reply I don’t have the T3 and T4 from May 2022 as I’m reading all this from the nhs app but I will ask. I can’t get a doctors appointment until 18/03 but something isn’t right? I’m going to take SlowDragon’s advice and get the full test including anti bodies privately. I insisted after the 119 TSH result 2022 that we leave it and see if it righted itself which it did until last November 2023. I am under an endocrinologist now and surprisingly he is the one that recommended I take 15mg of carbimazole!! After the drastic result the year before of TSH 119. So I’m confused I didn’t have any symptoms in May 2022 at all. So I’ll get the test and update you. Thank you
Thank you I have sent off for a home test I’m sure I’ve had other vitamin tests when I’ve had other tests? I’ll find out I have doctors appointment 18/03 so at least I can take the results with me and ask the relevant questions in the replies to my post. I’m so grateful to this site and yes I think maybe halving the carbimazole would help because I’m ready to give up on it.
I’ve just checked on my results full bloods from November 2022
25-OH-Vitamin D was 57.2
PCV was 0.482 and has been 0.499 May 2022 or just borderline since 2018
Red blood cell 16.2 has tested 15.9 May 2022
Mean platelet vol 11.0 has tested borderline since May 2022
I have no idea what all this means? All my other results are within the normal parameters. I will ask for vitamin tests?
Reduce Carbimazole to alternate days ….or cut in half and take half tablet daily
Looking to maintain TSH no higher than 2…..around 1 better
Ft4 at least 50-60% through range
Or reduce as PurpleNails has suggested
Right sided goitre…… a swelling one side might mean “hot” or toxic nodule. This would cause hyper, including disproportionately high FT3 often at much lesser elevations than you’d see with Graves autoimmune. (Trab & TSI antibodies)
This might mean you do need carbimazole long term but at a very low level. Certainly not 15mg - Perhaps as low at 5mg every other day or 3rd day.
these are my TSH results over the years pulled off NHS app the blue marked area is when they put me on 15mg of carbimazole and it had such a negative effect on my health. I am at present on 5mg daily since January but feel terrible also it’s having such a negative effect on my breathing (copd) that I can hardly get around my home? I can’t get in to the doctors till 18th March but would like to stop taking them? I apparently have always had I slightly overactive thyroid but have never felt ill until they put me on the carbimazole. Any advice? Thanks
I don’t know but I will ask when I go on 18th March I will reduce to half a day until I go to see the doctor and I will request to see the endocrinologist again now that I have a better explanation of the results. Thank you so much your advice is invaluable to me.
oh that’s great thank you I’ve taken your advice and bought the D3+K2 spray so easy to use. What strength B12 do you recommend ? I am currently taking 1,500ug I’m not sure it’s a u?
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