Hi all, I’m new here, I’ve written out my history in my profile including all test results so won’t go into too much depth. Essentially found to have hyperthyroidism in October and have been on 15mg Carbimazole a day since then. The doctor openly told me she ‘doesn’t know much about hyperthyroidism as all her patients normally have hypothyroidism’. I had one follow-up blood test after a month on meds but the GP didn’t contact me so I just saw my results in the NHS app and she’d written that results were normal and to continue meds. I’ve been trying to get a review with a doctor but the surgery directed me to a pharmacist who wasn’t able to do anything to help and I want to understand how I should be being managed. At the moment I’m also only being prescribed a month of Carbimazole at a time which is annoying, especially when there doesn’t seem to be any reason for it as no-one’s monitoring me! The pharmacist said she couldn’t change the prescription…
All I know about this condition is based on what I’ve read online and I still have some questions I’m hoping you can help with!
1. What should my GP be doing? Am I right in thinking I should be having regular blood tests and my dose monitored? She referred me to endocrinology but I called them this month and they told me they’re only now sending appointments to patients referred in January last year, so I have a long wait ahead!
2. I asked the GP if she could do an antibody test and when I saw the results it was a thyroid peroxidase test, am I right in thinking that’s the one you’d normally have done for hypothyroidism/hashimotos? Can the GP order others and should I ask for these or is it not important? Regardless my result was considerably higher than the normal range.
3. At what point is Carbinazole dose reduced? My FT4 was back in range within a month, but I’m still taking the same dose as before. I’m a little concerned because I’ve got some symptoms that are indicative of hypothyroidism such as low resting heart rate (I’ve hit 38/39 a few times recently), cold hands and feet, I’ve gained a stone in weight since starting meds despite the fact that I’ve slowly gotten back to exercising regularly (which I’d had to stop due to my heart rate getting so high during exercise), and despite calorie counting in an attempt to lose weight since Christmas. I’ve managed to gain another 3lbs since I’ve been trying to lose weight. I’ve also had really painful and stiff legs on occasion that is worse than any exercise related soreness.
4. Is acid reflux a common symptom of Carbimazole? I’ve been struggling with this in the last couple of weeks. One night I woke up with pain in my chest that hurt more when I inhaled, but I’ve also had a feeling of tightness/lump in my throat, acid coming up into my throat etc. I’m not sure why I’ve now suddenly got this, and environmental changes such as not eating for a few hours before bed and avoiding certain foods aren’t making a lot of difference.
Thank you so much for a very confused and frustrated person!
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LeopardLegs
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Latest results TSH <0.01 mu/L, FT4 14.9 pmol/L, (no FT3)
FT4 quite low by many ranges (ranges vary between labs always add them), likely now lower. The low heart rate strong indicator you are hypothyroid. TSH takes time to respond from now on consider it unreliable.
I started on 20mg carbimazole after 2 months the dose was halved. It should have been tested 6 weekly, but there was a mix up & my referral appointment was delayed, but once levels are approaching range it’s normal to reduce dose often by 50%.
Every adjustment needs a repeat test after 6 weeks until stable then 3 monthly can be considered.
I think you need to reduce carbimazole now, as the decline will continue. Is it 15mg pills? or 3x5mg. I think I might drop to 5mg per day. taking 10 / 5 every other day would equal half current total. Pills aren’t meant to be split, but I did & had no issues - its due to it being less accurate. Slightly less accurate daily is better than having the wrong total weekly, carbimazole work’s cumulatively. It reduces thyroid output.
Thyroid peroxidase 123.1 iu/mL (range 0-5.5). Confirms autoimmune but not if thyroiditis or continuous Graves, TPO can be positive with both.
It’s TSI or TRab which need to be tested. Ive seen private options but they are expensive, can take a long time to process & cant be by finger prick. & I can’t find the one I saw previously.
I’d start by asking your GP of they can have blood tests sent from endocrinologist including TSI or TRab. It’s sounds ridiculous they are a year behind.
I’m on extended wait list for endocrinology myself & assumed it was because I was stable.
Acid reflux could be caused by thyroid issue, if currently hypothyroidism don’t assume it high acid, you could have low acid which causes same symptoms & will affect absorption of food.
Gluten issues are also common with thyroid autoimmune. This is something GP should be able to test for. this will detect allergy (you need to be eating a gluten diet prior to test) it won’t show intolerance. So even if negative result trial a strictly gluten free diet.
Recommend nutrients tested folate, ferritin, B12 & vitamin D. GP may agree but not always, many use private companies for full test including FT3 & nutrients.
Thank you, this is really helpful. I was planning to drop my dose to potentially 5mg but was feeling like I shouldn’t have to be managing this myself and forking out for private blood tests constantly! I think the lab range for FT4 is 9-19 so 14 seems right in the middle but that was 8 weeks ago. I am on 3 x 5mg a day so it’s easy to drop down at least.
My NHS app says my referral to endocrinology hasn’t even been reviewed so the wait doesn’t seem to have anything to do with the way my referral might have been triaged!
I’d not heard of low acid so will look into that. The information on the antibody testing and gluten is also really helpful. I’ve been cutting out processed foods and focusing on whole foods anyway and trying to do things to manage stress levels!
I got blood tests done for vitamin D and anaemia as part of the initial home blood test package I had done back in October that identified the thyroid issue and they were all within range. I take a vitamin D supplement over winter, a multivitamin that includes iron because I can have heavy periods which cause fatigue and once I was due to give blood while on my period and was borderline on iron levels! I also started taking a magnesium supplement after I was diagnosed with hyperthyroidism to help with my sleep.
You MUST have TSI or Trab tested to confirm Graves’ disease
you certainly sound like you need dose Carbimazole reduced.
Autoimmune HYPOTHYROID (hashimoto’s) frequently starts with transient hyperthyroid results and symptoms as cells breakdown releasing excess thyroid hormones. It’s not true hyperthyroidism and Carbimazole is not correct treatment.
high TPO antibodies can be linked to Graves’ disease as well as Hashimoto’s
For full Thyroid evaluation you need TSH, FT4 and FT3 tested
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high TPO and/or high TG thyroid antibodies
Autoimmune thyroid disease with goitre is Hashimoto’s
Autoimmune thyroid disease without goitre is Ord’s thyroiditis.
Both are autoimmune and generally called Hashimoto’s.
Low vitamin levels are extremely common with hashimoto’s or Graves’ disease
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
Testing options and includes money off codes for private testing
Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee
Totally unacceptable and unusual to have to wait a year for referral with Graves’ disease
A years wait is typical with Hashimoto’s, though also unacceptable
Here’s link for how to request Thyroid U.K.list of private Doctors emailed to you, but within the email a link to download list of recommended thyroid specialist endocrinologists
Ideally choose an endocrinologist to see privately initially and who also does NHS consultations
Thank you so much for this. I had vitamin D/B12/folate/ferritin tested when I ordered the private home blood tests back in October and they were all ok but I do take those within supplements already anyway!
What you’ve said was my worry, that I may be being treated for Grave’s when actually the hyperthyroidism was just temporary and it’s actually Hashimoto’s and things will go excessively in the other direction. I really don’t want to spend the next year on a rollercoaster of thyroid problems and feeling unwell!
I can’t really afford a significant amount of private tests and appointments (ironically I work in the NHS!) but I’ll go that route if I have to. I had only been able to find the TPO test available online which is the one I’ve had so I’ll look into those links you’ve provided. As I’ve had no success trying to talk to a GP so far I’ve put through an e-consult and laid everything out there so we’ll see what happens but in the meantime I’ll reduce my own dose of Carbimazole and see how I feel.
There's no point in long explanations here. You need to be looked after by an endocrinologist. You don't need to see them, it can all be done by phone and letter.
In short - your understanding is correct - and you should have regular - 6-8 week follow up appointments and the Anti Thyroid drug titrated down as your T3 and T4 fall back down into range as otherwise your T3 and T4 will fall too far through the ranges and you suffer the equally disabling, if not worse, symptoms of hypothyroidism.
All the AT drug does is put you into a ' holding position ' much like a plane circulating above while waiting for a landing slot -
while we wait for your immune system response to calm down and your thyroid hopefully reset itself without the need to any medication.
Your body is / was in a heightened state - and suggest you stop the dieting and exercise and rest - eat clean and cook from scratch - nurture your body rather than deprive it - you are not well :
What were your original symptoms - have these been relieved :
There are 2 auto immune diseases that can cause a hyperactive/overactive thyroid -
but only Graves Disease should be treated with an AT drug as with Hashimoto's the ' hyper phase ' is transient and the T3 and T4 fall back down into range by themselves.
To know which AI disease you have we need to know which antibodies were found over range and positive in your blood test at diagnosis -
it may have come back after the initial T3 and T4 readings -
P.S. So I see an o/range TPO reading which does not rule out Graves Disease -
which is generally written as a Thyroid - TSH Receptor antibody - TRab or a TSI :
Hi Penny, thanks for this! No antibody tests were done at diagnosis, I’d been told they would be but then when I got the initial blood test results it hadn’t been. They did the antibody test I’ve had (TPO) at the review because I’d specifically asked if they could do the antibody tests. It wasn’t until I got the results that I realised they weren’t the ones I was expecting them to do!
My initial symptoms that led me to query if there was something going on were fatigue, poor sleep and my heart rate hitting 195 within a couple of minutes of starting a run despite being generally fit! Once I got the results I realised that I was having many of the other common symptoms but I had just thought I was stressed/had a lot of nervous energy/perhaps was pre-diabetic! Things like shaky hands, weight loss (I’d been actively trying to lose weight anyway but was struggling to restrict calories so I just thought my metabolism was really fired up, which it was but not for the reason I thought!), hungry all the time to the point where I felt really angry and shaky if I didn’t eat. I was feeling really awful by the time I got prescribed medication and was desperate for something to help me feel better. Records from my garmin watch shows my heart rate increasing from about July until I got on meds at the end of October. I can’t think of anything that could have set it off, my job now is a lot less stressful than jobs I’ve had in the past and I’ve not had anything else going on. My symptoms subsided quite quickly after starting medication though I did get covid not long after and had some odd symptoms with that.
I stopped exercising from the start of October when I realised something was wrong through til just before Christmas, I went on a nice relaxing holiday where I forced myself to rest and only did yoga and walking the dog. Because my heart rate had been lower for 6-8 weeks around Christmas I decided to slowly start exercising again but I haven’t hit it too hard. I started couch to 5k but only doing 1-2 sessions a week and going climbing once a week. Exercise and being outdoors is an important part of my lifestyle and mental health/stress management, I don’t really do it for weight loss reasons as much as enjoyment and staying healthy in body and mind. I’ve made a real conscious effort to eat well and cut out processed foods/sweets etc. I don’t generally drink alcohol but chocolate is probably my downfall and I’ve only allowed myself 85% barring the odd special occasion. I only have one coffee at 9am and then water or squash the rest of the day. I don’t smoke. I do things that I know help stress/anxiety such as always going for a walk on my lunch break, journaling etc. I’ve spent a lot of time in therapy to deal with old wounds. Generally I’d say I have a healthier lifestyle than most and I feel like I do the ‘right’ things which is why this is so frustrating!
Slow( speedy ) Dragon has given you the link to the Medichecks Graves antibodies test highlighted in her reply in black, darker print.
Ok - you seem to be very controlled and measured in all you do - maybe cut yourself some slack and don't be too demanding of yourself - you are only human - and currently unwell - find things that give you pleasure and try and ' turn off ' though I know it's easier to say it than to do it - when in a state of flux.
either way - whether Graves or Hashimoto's we are looking at an Auto Immune disease -
Hashimoto's tends to attack just the thyroid and eyes - where as Graves is multi organ - though mostly evident through thyroid and eye issues, and said to be life threatening if not medicated with an AT drug as thyroid levels can continue to rise higher and higher causing undue stress on the total body and cause the heart to malfunction.
Stress and anxiety are common triggers especially for Graves Disease - you might like to read around a bit - I found Elaine Moore the most well rounded of all I researched - both in book and website form elaine-moore.com
Hi, GPs do not usually start carbimazole treatment or know much about hyperthyroidism, often they are not even allowed to test T3 or Trab antibodies, the reason they are treating you is probably because of the long waiting for endo. The fact the GP admits not knowing much might play in your favour, they might be more ameanable to listen to you.
I was diagnosed with Graves (on Trab antibodies, although they found the positive TPO first) after finding a T4 of 42 and no TSH (GP blood test prompted by symptoms). Endo recommended to the GP to start me on 20mg (while on waiting list). Less than 3 months later, on my suggestion, I had had my dose lowered twice, and was on 5mg. 10 months after starting treatment I started cutting the pills in half and continued like that for 4 months, which is when treatment stopped as I was on remission.
I share this to say, that yes, it sounds like you need a lower dose.
I now seem to have Hashimotos which has not been diagnosed nor treated yet (waiting on my Medichecks today) but that is another story.
Graves treatment takes precedence and there is no medication as such for Hashimoto's as it is transient high levels of T3 and T4 and the AT drug will also be semi-blocking your own new daily thyroid production and presume the extremes of Hashimoto's off set by the AT drug.
I think we have some research papers since I last wrote to you - apologies if I've sent these before - but the may well also be useful for the o/poster LeopardLegs -
Thanks Pennyannie! Sorry, I did not express myself well, what I meant to say is: I had Graves, was treated with carbi (didn't need high doses), went into remission and stopped carbi as per endo advice about 7 months ago (after 14 months of treatment), was ok for a few months and now, instead of suffering a hyper relapse, I have developed hypothyroid symptoms, high TSH (but not over 10) and borderline low, or just out of range T4. And my consultant is off sick. But I think I need levothyroxine, hence doing a Medichecks to see if I can talk to my GP.
Ophthalmologist ruled out TED and Sjorgrens. I use an Optase heat mask as per your helpful advice, and 0.2% Hyaluronic Acid preservative free eyedrops. It is not perfect but I get by. 😀
Oh - ok - then - can't take the credit for the Optase but will for the Preservative Free eye drops.
So with Hashimoto's you are liable to erratic own daily thyroid hormone production as this AI disease progressively attacks and disables your thyroid.
You may well experience ' swings ' in symptoms with higher than ' normal ' T3 and T4 results and then lower than ' normal ' T3 and T4 readings for you - which ultimately results in your thyroid being unable to function and support you and will you requiring full spectrum thyroid hormone replacement.
thyroidpharmacist.com - written and researched by Dr Izabella Wentz seems well received by many forum members who are dealing with this AI disease.
Just to reference ' normal ' is not optimal and that's where we need to be to support our bodies through this phase of ill health -
I aim for a ferritin at around 100 - folate around 20 - active B12 75++ ( serum B12 500++ ) and vitamin D at around 100.
Ok, the preservative free goes to you then, ha, ha! I thought it was both you. I am going to start a new thread now that I have my Medichecks results so as not too highjack this thread. Thank you soo much!
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