Hi There,5 days ago I stopped carbimazole as I started to get a mouth ulcer, constipation, severe fatigue, weight gain and issues with my eyes.
My endocrinologist said if I had any of these symptoms to stop right away and call them ASAP.
I have called everyday for 5 days and no one is returning my calls. My GP won't touch me as this is in the endos hands.
I have only been carbimazole for 50 days, so relatively new to the medication.
I have read a lot of people when stopping their meds they start to feel the effects of hyperthyroidism again however I haven't had any of those symptoms and have been bedridden for a week now. I get 3 hours I'm the morning where I can do things and then I crash badly, needing to take multiple naps a day and sleeping 12 hours a night.
I've never felt so tired before and wonder if there's a possibility of going into hypothyroidism?
I have another radionuclide test tomorrow and also had an ultrasound on my thyroid 3 days ago. The ultrasound lady even stated that my thyroid still looks angry.
Im so confused as to what is going on and with the receptionists either not passing my calls on or the endo team being to busy to call it scares me.
I had an eye test on Tuesday and they have noticed a change in my eyes, which I've now got another referral to the hospital for my eyes (they think it could also he neurological).
I'm also confused and forgetting how to spell (relying on spell check etc).
Has anyone else gone through this? It's very hard to find info online.
Many Thanks,
Written by
AsherLee
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We are a friendly, supportive forum and are here to help.
So we can offer better advice, can you tell us more about your thyroid condition, eg prescribed Carbimazole dosage, initial symptoms before commencing Carbimazole, plus blood test results (with ranges in brackets) for:
TSH
FT3
FT4
Plus any key vitamin tests (ferritin, folate, vitamins D and B12)
In the first instance, do ask your GP for the above tests. Also ask for print out of ultrasound report. We don’t recommend supplementing key vitamins without testing first (and sharing results with us).
If your GP is unable to complete all the above (eg if TSH is within range, some surgeries may not be able to access FT4 and FT3 tests), you could look to do this privately, as many forum members do, for a better picture of your thyroid health:
It is essential to have correct Antibody tests if Graves is suspected, so please request these. I say this because I was initially diagnosed as Graves, largely on hyper- like symptoms, but (following advice here), I pushed for correct testing and found I’m actually hypothyroid with Hashimotos.
Graves Disease (hyperthyroidism) needs to be confirmed via positive TRab or TSI:
I've had blood tests recently but I do not have these results. My previous results from 20th of February 2025 are:
TSH 0.009
T3 5.7
T4 13.6
The t3 and 4 both improved dramatically within 6 weeks of meds yet the tsh did not change.
Previous T3 19.7
Previous T4 26
Ferretin 226 however I had an iron infusion on the 3rd of January prior to doctors realising I had graves. I also was in a thyroid storm and had an episode at work which uncovered the thyroid stuff and waiting to hear if I have MS as I have 2 T2 hyperintensity lesions in my brain.
Vit D 137
B12 215 and active b12 39
I've also been diagnosed with Hyper parathyroidism, but not super dramatic with results.
Calcium 1.52
Ca cor. PH 1.48
I hope this helps? Again not sure what my most recent bloods are that i had last week.
Is it normal to feel this fatigued?
Edit*
I have definitely had those tests however I haven't requested them. The results were definitely graves disease.
I was on 5mg morning and 5mg at night. So 10mg a day.
I don't know if these help.
Parathyroid hormone 9.7
Total calcium 2.75
Albumin 45
Corr. Calcium 2.65
It's hard as my doctor won't see me and the wait time is now over a week. Our system is shocking!
I will try find out more tomorrow when I'm in hospital, but not confident in my chance
It is not surprising you feel so fatigued after all you have been through. Your mind and body will need time / significant rest to recover.
Can you edit the above tests to add ranges. As these can vary between laboratories
Were any thyroid antibodies checked?
What dose Carbimazole was prescribed?
Sometimes when the thyroid is struggling, blood test levels can vary considerably. This definitely happened in my case and that’s why I’d insist on TRab and TSI to confirm Graves.
Most people who develop TED have an overactive thyroid and Grave’s Disease, whereas some have it with an under active thyroid/ Hashimotos (like myself) and a few have it who are euthyroid (no thyroid condition).
I recommend you take a Selenium supplement, 200ug daily, as this has showed to help in mild/ moderate TED when taken in the first 6 months. Many take a maintenance dose of 100ug daily when the active phase of the condition has passed. Preservative free lubricating eye drops are important, such as HycoSan or Hyloforte. For light sensitivity wear sunglasses (even indoors if needed). If you have any eye pain, my TED ophthalmologist said to take ibuprofen (with food to protect your stomach). Also worth doing is using 2 pillows at night, to elevate your head.
Above all, please don’t overdo it on Google images, as they show ‘worst case’ scenarios.
I received great advice and support from TEDct, so do get their information pack. They run a telephone advice line, hold regular webinars and have a Facebook group. TEDct helped me find a TED specialist ophthalmologist in my area.
Please double check the eye drops you have purchased are preservative free- this is very important.
Light sensitivity was a huge issue for me (& like dry eye, continues to be an issue- although eye swelling/ pain has subsided). I still have to wear reactive lenses to block out bright lights and coloured overlays for night driving (to reduce glare)
I also recommend you take ongoing photos of your eyes/ alignment and store in ‘hidden’ on your phone, as you don’t want to be looking at them all the time. Having this bank of photos over time is useful when I have both endocrinology and ophthalmology appointments.
Yess light sensitivity is a nightmare!I actually picked up Hyloforte on Tuesday and it has been helping.
Thats very interesting that you were initially diagnosed with Graves and then found out it was hashimotos.
The doctor did say I could switch but I haven't found any info on that.
I'm super sensitive to any medication as well.
I will definitely try to Ibrufen and look into the Selenium.
I also find I have terrible brain fog, this hasn't improved since November when I noticed all the symptoms start.
I was losing weight quickly and have always been slim, I've noticed in the last week I have put on 3kgs and it's usually near impossible for me to put weight on. This also raises my suspicions
Carbimazole is an Anti Thyroid drug generally prescribed after there has been a diagnosis of Graves Disease - this is an Auto Immune disease that tends to only get diagnosed when the immune system starts attacking the thyroid and / or eyes.
There is an alternative AT drug - Propylthiouracil - PTU - please ask if this can be prescribed - and it is essential if you have Graves Disease that you stay on some form of AT Drug.
Graves can present with either Blocking or Stimulating antibodies - and these 2 extremes of symptoms can change places as they vie for control of your thyroid - and you can experience a roller coaster of symptoms though none of the fun -
your body can be in a ' heightened ' state and have something of a brain / body mismatch - with your brain ' wired ' and thinks you should run a marathon - whilst your body too tired to make a cup of tea without sitting down while waiting for the kettle to boil.
All the AT drug does is dampen down your immune system and ' buys you time ' while we wait for your immune system to calm back down again and hopefully your thyroid reset itself without the need for any drugs.
I detail below the most recent research that could be of relevance to you :-
Possibly your dose of the AT drug now needs reducing - but we need to have more information to help you better understand what is going on.
Do you have a copy of your initial blood tests at diagnosis ?
this would look like a TSH-T3-T4 result and range - and any antibody blood test results looking like a TPO - TgAB - TSI - TRab - result & range or maybe writing saying a TSH Thyroid Receptor with a single number result and cut off ?
What dose of AT drug - Carbimazole - were you first prescribed and has this been reduced since ?
What are your most recent follow up blood test results for your TSH + T3 + T4 -
We need both the T3 and T4 thyroid hormones to be maintained at around mid point in the ranges and your TSH may or may not have moved at this point in time.
Please try and rest - if with Graves disease - it is essential that you stay on an AT drug as your immune system can be highly volatile during the early stages of a phase of Graves Disease.
I just wrote a whole message and it disappeared 😕 sorry!Thank you for your information and response.
I put the results that I have on hand in one of the previous chats, I think second from the top?
I have definitely been diagnosed and run all the tests for graves I just don't have those results on hand.
Funnily enough my doctor just called, she has an assumption that I may have gone into hypo given my current state.
She said they think from the ultra sound I have an adenoma on my parathyroid but they radionuclide appt will give a better result tomorrow.
As I'll be in the hospital, I will try and find the endo team and if no luck she will call them.
Carbimazole 5mg twice a day, I've only been on the medication since January.
I'm definitely not feeling how I felt prior to meds. I was also in a thyroid storm at the start of January, so I definitely didn't enjoy any of those symptoms. Currently I'm bed ridden, no racing head or anything I felt before. This all feels new.
The calcium could be causing some of these issues I was told.
I will have a look at those articles you sent though. Thank you.
You all seem so lovely and have a great deal of knowledge and information that's be valuable
We are a patient to patient open forum and many forum members have ' been there ' before you - and why this forum, supported by Thyroid UK - thyroiduk.org - so brilliant.
Yes - your parathyroid issue does throw another spanner in the works - but lets just go step at a time - find out exactly what your diagnosis is - and ensure your dose of the AT medication is at a low enough level to maintain your T3 and T4 within the ranges at around mid point -
When metabolism runs too fast as in hyperthyroid or too slow as in hypothyroid the body has trouble extracting key nutrients from food no matter how clean and well you eat - so please ask that your ferritin, folate, B12 and vitamin D are run as if these are not maintained at optimal levels this alone will compound your ill health further than necessary.
There are various OTC eye drops, sprays, lotions and potions - just ensure all are Preservative Free and just use the heavy duty vaseline type options over night as these do tend to cloud vision when not needed and asleep - though think I still saw my dreams !!
Ok thank you I'll make a note to remind my doctor.Yes you've all been amazing with your knowledge and understanding. I've never meet anyone else with Thyroid issues so it's all very new to me.
I bought on Tuesday Hyloforte and its been really helpful.
My vit D is through the roof, but I've been making the most of this summer as our winter's are harsh and lack sun.
I also had an iron infusion in January which has helped my Ferretin and iron levels and B12 is 215 and active b12 39 which look to be within the range?
Have you heard of people going from hyper to hypo suddenly?
Could all this been more related to my parathyroid?
I'm also getting tested for MS. So again, I'm also wondering if there is something more going on with the 2 lesions in my brain.
Argghh I've been healthy, no dramas for 37 years. Barely a cold or flu...this has all happened so fast!
Both RAI and a thyroidectomy are definitive treatment options and you then become Primary Hypothyroid.
You will need to take thyroid hormone replacement for the rest of your life and the monitoring and treatment options available in Australia may not all be permitted in your doctors remit -
and you may find you need to go privately to get on the most appropriate treatment option for you if the basic standard treatment is with T4 monotheraphy as in the UK and does not restore your health and well being.
If you read my Profile - just press the icon that sits alongside my username you can read of my thyroid journey - I have been much more ill since RAI than before -
RAI is a toxic substance and known to be taken up to a lesser extent by other glands and organs in the body and it is also now known that with RAI there is an increased risk of cancer to small bowel and breast - and personally think this treatment option should be removed in what is perceived as a ' health care setting ' :
Surgery is a much cleaner and more precise definitive treatment option should AT drugs not be seen as the long term treatment option which I now believe is accepted and considered as a full treatment option in its own right by forward thinking specialists not constrained by hospital and medical guidelines.
Please do your own research -
The most roundest of all I researched some 8 years post RAI thyroid ablation is that of Elaine Moore - books and website which we now need to access via the archives -
Hi Penny, thank you so much for all your information. I will have a look at your profile. I've just got home and still learning about this site.
I just got a call to say I have a tumour on my parathyroid, so I will find out tomorrow what that all means. I know through research it will most likely be benign. Still a lot to digest...
The RAI sounds super scary!
I do look forward to reading your journey. I had no idea about thyroid issues more than 3 months ago, so it's all very new and has come hard and fast.
Thank you for the resources you have sent too, i will look through them when I'm in a better headspace
Graves’ sufferers can have periods of being under active especially if they have taken too much carbimazole. You need to speak to your doctor urgently does he have an email address? I would email him and tell him your symptoms
If you are in the hospital make sure they know what is going on and ask them to explain. If you can take someone with you it would be very helpful, as support and in case you forget anything they say.
Ah thank you!Vit D here is above 49 nmol/L so 137 is great!
S B12. 200-700 I'm 215 pmol/L
Active B12 needs to be over 35 pmol/L so yes 39 is getting down the lower end.
My ferretin prior to infusion was 17. Range should be 30-200 ug/L
2 months later I was 576 and last month 226. So I was extremely low at 17 prior to it.
Have you had an iron infusion?? That night I thought I was going to die. High fevers, shivers, body aches, headaches, vomiting. I was in a really bad way. I often wonder if because I was undiagnosed with Graves at the time, could that be why i was so violently ill?
Suddenly improving ferritin by iron transfusion would have been an issue with Graves’ disease
Low ferritin and low B12
Are you vegetarian or vegan?
Have you had folate tested?
B12 needs improving
With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a separate B12 supplement
A week later add a separate vitamin B Complex
Then once your serum B12 is over 500 (or Active B12 level has reached 70), you may be able to reduce then stop the B12 and just carry on with the B Complex.
If Vegetarian or vegan likely to need ongoing separate B12 few times a week
Igennus B complex popular option. Nice small tablets. Most people only find they need one per day. But a few people find it’s not high enough dose and may need 2 per day and/or may need separate methyl folate couple times a week
Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule) Thorne can be difficult to find at reasonable price, should be around £20-£25. iherb.com often have in stock. Or try ebay
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 3-5 days before ALL BLOOD TESTS , as biotin can falsely affect test results
In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg) and continue separate B12 if last test result serum B12 was below 500 or active B12 (private test) under 70
Thank you for all the following resources, I will look through them all in the coming days.
I really appreciate you reaching out and all you've provided. I do agree, the sudden jump in ferritin was extreme and did cause a lot of discomfort.
I'm not vegan or vego however I don't eat beef, other than that I have a fairly balanced diet and try to eat as much protein, veg and carbs to keep a balance. Probably something I should look more into.
I just found out after my scan today that I have a growth on my lower left parathyroid...not sure if that has been why I've been so unwell. I'll find out tomorrow more on the issue. My doctor mentioned surgery however that will be in the hands of the endocrinologist. She did confirm Graves as a definite, but I guess that now seems like a separate issue?
I will look into the B12 supplements and the above suggestions you have so kindly provided me with!!
Thank you so so much! I'm forever grateful for all your information
Hey sorry once again I sent a message that clearly didn't send! Not sure what I'm doing....The parathyroid has been a questionable thing until today which confirmed an adenoma. Not sure if that's why I've felt so unwell on top of the graves or meds.
I'll try to help but got up today feeling very dizzy🥴
So my history....hyperthyroidism, later diagnosed graves thyrotoxic [ I didn't have TED] but my eyes are still sensitive to light, especially on these sunny mornings, they are also dry and gritty, recently had a blood clot in my left eye, under hospital for that atm🙄.
When I was hyperthyroid I was very tired, just going to the kitchen or bathroom felt like I'd run a marathon, I'd be bedridden most days, unfortunately I couldn't take both anti thyroid drugs and went into thyroid storm [ graves thyrotoxic].
Had thyroid removed in may then rushed into hospital with blood in urine in July my calcium was 2.76 had all tests...pth, cal, vitamin d where it was found I had primary hyperparathyroidism, but after 6wks new bloods showed my calcium had gone back down but my pth remained at 9.5..over range.
This as been my saga since 2019 ...calcium goes out pth goes out then goes back in, unfortunately no Adenoma as been detected as yet.
If you've been diagnosed with parathyroid disease there are many forms.
Primary hyperparathyroidism...this is high calcium and high PTH
Normocalcemic hyperparathyroidism..this is mid to top end calcium [ within range] and high PTH .
Hypoparathyroidism ..this is low calcium and low PTH
You seem to be getting the same runaround I'm getting with both My thyroid and parathyroid conditions 🤦♀️
I found out today that I have a tumour on my bottom left parathyroid. My levels are 2.75 however I was told that is low?
You mentioned yours are 2.76. What are your thoughts on those levels?
I also found out that none of the receptionists have been passing on my messages to the endocrinology team for the past 4 days that I had stopped my medication 5 days ago. They were pretty upset with that and of course so am I.
That's very scary to hear you had blood in your urine! I haven't really checked mine. However I have noticed I am passing less and less this last week. I did hear my liver and kidney functions are all good, which I was concerned about it.
I didn't ask about the PTH levels, but back on the 20th of feb they were 9.7H. Reference 1.6-9.0 pmol/L?
I found it interesting when you mentioned you were feeling very fatigued. Prior to my diagnosis, I was running super hot, like boiling hot. Hot flushes on my face and sweating all the time. Losing weight, anxious and very confused. That was when I had an incident at work. I lost my sight, became disorientated, confused, slurring words and had to be rushed to the doctors by colleagues.
I had an MRI and multiple tests.
All doctors prior to this keep telling me i need to go on antidepressants which i advised them i did not need them. Finally the MRI showed two T2 Hyperintensity lesions in my brain and my bloods were all over the place E.G all the Thyroid stuff...So I'm still unsure if all of this is just my thyroid.
I provided palliative care to my mum only 18 months ago at home, while her PPMS took over and she passed from that with me by her side. So i guess my fears are even stronger that maybe I have MS on top of all of this. Unfortunately I cannot see the neurologist until August, so it's along wait with everything else going on.
My eyes have also deteriorated and I've taken on board all the wonderful advice about eye drops etc. but visual snow is my other issue, apparently that is neurological?
Anyway, sorry for my whole spewl... I feel like you understand the parathyroid issue very well. I'm curious if you've had the radionuclide tests?
This second round they separated it into a 9.15am appointment and a 12.15pm to see the uptake in the parathyroid over the 3hrs as apposed to the first one which was just one appointment, however the Graves hid the parathyroids so it wasn't discovered.
Graves is a stress and anxiety driven Auto Immune disease - there is likely a genetic pre-disposition and it can be triggered by a sudden shock to the system like a car accident or unexpected death of a loved one - so having just read of your situation and your nursing your mother -
I think facing and dealing with this one way street, will have compounded your own health issues and the ' package of grief ' that has likely been bottled up for years makes sense in the overall scheme of things and likely why you are now dealing with your own situation -
P.S. Since you already have eye issues RAI should not even be suggested as a treatment option as it will likely compound your eye issues further - and in all honesty why is RAI still seen as a treatment option in a health care setting - knowing what we now know ?
I can say ' snap ' to most of this and my diagnosis made after being verbally abused and physically threatened by a man I employed as my assistant manager -
and he chose to do this when there were no witnesses and he actually planned it this way and took great pleasure in telling me so !!
So hindsight tells me I wasn't the 1st - anyway - we are where we are :
The ' why me - why now ' - is a big subject - and everyone has their own story -
I think for some of us we tend to put everybody else first, ignore our ' selves ' and end up totally burnt out:
and I think to just acknowledge your ' self ' and forgive the fact that you can't cope with everything - is the first step to understanding why you maybe where you are now.
You likely need being signed off from work - but understand ' work maybe ' the only place you feel you have any control and acknowledgement of your ' self ' - and work becomes your retreat ?
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Carbimazole 
Graves disease
Hyper to hypo
Still can't get diagnosed but extra tests being carried out
