Felt unwell, was constantly hungry and gaining weight over a year ago, GP surgery sent me for bloods and I was told (over the phone) I had hyperthyroidism?! Which is something my maternal grandmother had had. The GP said he'd speak with a specialist and get back to me .... that was over a year ago and I am still waiting for that callback! I emailed and phoned the surgery in the following weeks but was told by staff I had been referred for an endo appt and had to wait for that. Four months later I was seen by an endo. I felt ill so researched in the interim and starting taking lemon balm, bugleweed and motherwort and felt a lot better. Endo was misogynistic at best and dismissive of my GP's medical negligence, and demanded that despite a decline in symptoms and decline in numbers I should be on medication despite its horrific side effects. I declined at this point and requested to be monitored temporarily to see if I could do it without medication and he said he'd reluctantly see me again in a few months. Because my T4 number continued to decrease he didn't see me again and just discharged me back to my GP without further consultation. I didn't hear from the GP as I was later told "you will not receive any input or monitoring if you don't adhere to medication". I had another blood test through general medical check up which showed T4 had escalated again, still the GP did nothing, so I plucked up the courage to put in a complaint (not something I would normally do), I received a phone call stating that I had not done enough chasing to put myself on medication in the first four months following diagnosis and that this was my fault not theirs but they would refer me to the hospital I work at to get them to change my mind about medication. I saw another endo who was a bit nicer and I said I would think about medication options and he asked to monitor me. T4 went down to nearly normal levels again but he recommended that my GP start me on 20mg carbimazole six months ago ..... I have yet to hear from the GP and I've given up trying to contact them. I went back to the hospital for a "check-up" and ophthalmology appointment - to confirm that my astigmatism which I've had from birth was in fact an astigmatism that makes my eyes prominent and not TED as suggested :/ My T4 had increased again, so reluctantly I have taken the prescription from the hospital instead and started medication last night, I cut the 20mg in half (don't come for me I know you shouldn't do this) but I have a gut feeling this medication is going to make feel vile! Already I feel shaky, fatigued like my eyes are moving slower and struggling to concentrate and my skin feels like it's about to crawl off somewhere on it's own almost tingling sensation. Prior to Hyperthyroidism I was always freezing, like painfully cold sometimes I would cry and I would have night sweats, and then since hyperthyroidism I feel like a normal person at a normal temperature and no longer have night sweats - right now it states it's 22 degrees in my house and I am fully clothed and wrapped in a dressing gown with big fluffy socks. Again prior to Hyperthyroidism I slept for about 4-5 hours a night and now I sleep 7 hours and I am scared I will now revert back to that schedule. .... the endo said my numbers dictate Grave's disease, so I guess I keep taking this medication until I can't tolerate life anymore??
Carbimazole : Felt unwell, was constantly hungry... - Thyroid UK
Carbimazole
Welcome to forum
What has doctor tested?
Going by numbers might mean the TSH is low but to confirm Graves you need continuous above range FT4 & FT3 and positive TSI or TRab Antibodies.
Sometimes these aren’t tested.
You could also be fluctuating between hyper & hypo.
20mg is a moderate starting dose for carbimazole. The starting dose should be guided by FT4 & FT3 levels. Within 6 weeks the level should be reduced & the dose is often altered.
Do you have a further blood test scheduled?
Carbimazole can have some rare side affects but it’s important to get levels under control.
Your care doesn’t sound good & to blame you for not “chasing up” is appalling.
Time to be organised, methodical - get a diary and persistently & politely follow up every test, results & appointments due. If they say they’ll get “back to you” ask when & if they’re not sure say you’ll be calling back following day.
You are legally entitled to blood test results either online or printed copies. You also need lab ranges with every test as ranges vary between labs.
Start with getting results and see what has been tested, post on here & we can explain.
Thank you - I am so damn tired already .... I feel bloomin' awful I tried to upload results in the last post so I'll try again now .... they didn't give me a copy of this last on in June .... just saw it on the screen
Not sure if you can see that - my lips have started tingling now and my hands feel like lead 
I dare not eat anything as it's going straight through me, which is the total opposite of how I was before
I don’t see an image. You should be able to add image using sun & mountains icon.
Edit. I can’t add image either, using icon & pasting image.
Can you type out results eg
Date if you have
Item - result - (range)
TSH <0.01 (0.35 - 3.50)
'I can’t add image either, using icon & pasting image.'
If you're using a suitable device, try dragging the image file from wherever it's stored and dropping it directly into the text box.
Can’t drag on device I use.
I can copy & paste, the image is visible at a different location of tread, with both methods - but won’t submit. Or not there once refreshed.
C&P doesn't work for me either. I use a laptop so can do the drag and drop method, which usually works. Just wish HU would get on and fix it!
If I recall correctly, you use an iPad? If so, see here support.apple.com/en-gb/gui...
i think it's technical gremlins in the works , i've been having same probs with adding images for the last 24hrs at least , .. they are appearing in separate reply at the top of post instead of on the reply that i'm trying to add them to , but the reply button for that reply is staying grey, so can't submit .
Same with me.
Normal Ranges 20.06.22 03.10.22 01.12.22 13.02.23 28.03.23 28.06.23
TSH 0.3 - 2.5 0.01 0.01 0.01 0.01 0.01 0.01
T4 0.3 - 22 36 32 28 41 29 35
T3 2.0 - 7.0 10 10 10
TRabs 0 - 0.9 2.3 3.58
TPOs 0 - 34 13.5 12
That didn't work as the dates are now all over .... i give up
Don’t worry. We will work it out.
TSH (0.3 - 2.5) 0.01 0.01 0.01 0.01 0.01 0.01
T4 (0.3 - 22) 36 32 28 41 29 35
T3 (2.0 - 7.0) 10 10 10
TRabs (0 - 0.9) 2.3 3.58
TPOs (0 - 34) 13.5 12
I think I can see what’s going on.
Was it definitely TRab tested, not TG.
It auctually quite unusual for TRab to be tested more than once. It does look like a typical TRAb range.
TRab is positive which confirm Graves, TPO looks negative often it’s also positive with Graves.
TSH is supressed. Which is expected with elevated FT4 & FT3.
Was FT3 consistently 10 on a series of tests, as that would be unusual. It might be >10 is an upper lab limit & can’t test higher?
T4 range starts too low, think you might have put the TSH starting range. All your FT4 are over range from a little elevation to a significant degree.
20mg carbimazole is an appropriate dose at this stage. I think you might feel better soon the take the recommended dose but you must have levels re checked after 6 weeks.
Carbimazole can cause some initial symptoms which are similar to hyper symptoms. Prioritise stabilising your high levels as this will make the most improvement.
About antibodies
TPOab (Thyroid Peroxidase antibodies)
TGab (Thyroglobulin antibodies) TPO & TG “autoimmune” - Hashimoto’s (also present with Graves)
TRab (TSH receptor antibodies - measures stimulating, neural & blocking antibodies)
TSI (Thyroid-Stimulating Immunoglobulin) Graves.
Thanks for your response - however I feel so ill and so much worse than when I wasn't on medication ....I think they're just making me a lot worse doing this
Trab I think might have been tested twice because I was re-refered to another hospital that is not in my current catchment area (because I work at this hospital)
If you feel you react badly to carbimazole speak or your GP / specialist & see if you can’t try another brand or PTU is the alternative type of drug.
Try and persevere with a half dose, if you can, you may find you can increase in time.
You can also see if your GP will prescribe propranolol - which is often prescribed alongside antithyroid medication. Propranolol also has an mild anti thyroid element. If you have asthma it’s not recommended. Always reduce slowly if stopping.
L-cartinine & Acetyl L-cartinine an over the counter supplement which may also help. Many say it works well with carbimazole & can lower FT3.
Thank you - I don't have any contact with my GP anymore - hoping when I move house I will never have to deal with them again.
Propranolol is usually for the heart pals etc? I don't have those
I was taking L-Cartinine previously .... I guess I could try again.
I take it now as migraine preventer & many find it helpful with anxiety, which is a very common symptom with thyroid issues.
That's really good it helps with Migraines - my mother used to get them and it always looked awful so I really sympathise with anyone who gets them I don't have anxiety or hardly of the symptoms associated with Graves.... I had weight gain, constipation, slept like a log for first time in about ten years, hands and feet were warmer ... rest of me went to normal body temperature .... anyway thanks for everyone's input .... I guess I am just ill for ever
I also had few classic hyper symptoms when diagnosed with a hyper function nodule. I had an uncontrollable appetite & also gained weight. 10% are said to gain weight so we’re not alone. Symtoms are so varied & individual it’s not uncommon to have non text book symptoms.
As nutrients are often affected this conflates issue too.
I later found out levels have been elevated for many years but fortunately it was a mild evaluation which isn’t ideal but could have been much worse.
thank you - sounds like you've had an ordeal - I hope things improve for you very soon
The HU system treats all spaces in text using standard HTML rules - two or more spaces are treated as a single space. But it also ignores tabs (or only treats them as a space).
So columns are (almost) impossible.
You might do better using one of the calculators (even if you have nothing that needs calculating!)
healthunlocked.com/thyroidu...
healthunlocked.com/thyroidu...
Or take a screenshot of your formatted text and post that. (But there are ongoing problems posting any images).
[Normal Ranges] 20/06/22 : 03/10/22 : 01/12/22 : 13/02/23 : 28/03/23 : 28/06/23
TSH [0.3 - 2.5] ........ 0.01 .............. 0.01 ............ 0.01 .......... 0.01 .......... 0.01 ........... 0.01
T4 [ ? - 22] ................. 36 ................. 32 ................ 28 .............. 41............... 29 .............. 35
T3 [2.0 - 7.0] 10 10 10
TRabs [0 - 0.9] 2.3 3.58
TPOs [0 - 34] 13.5 12
if you tell me what dates the 10 . 10 . 10 are from, i'll edit it .
it's very unusual to have 3 results exactly the same with n0 decimal points , are you sure those are correct results for T3 ?
(and the dates for the antibodies )
As far as I am aware yup :/ but I'll totally honest and say I don't trust any of the results I have had .... as stated above my "care" has been negligent at best
Hello Pictbiker and welcome to the forum :
Graves Disease is said to be life threatening if not medicated as usually the T3 and T4 levels go very high and keep building higher and higher and can cause heart attacks and a total body breakdown referred to as a thyroid storm, which you can die from.
So- I am a little confused as this leaves the doctor and hospital wide open for litigation.
True many patients Graves is ' mild ' and they can tolerate the Anti Thyroid dugs, either Carbimazole or Propylthiouracil - ( PTU ) for short - with some Graves burning itself out, or better treated through alternative and more holistic treatment options, given enough time.
Did you ever have the thyroid antibody blood test run as Grave and Hashimoto's - both auto immune diseases start off the same way but only Graves is medicated with an Anti Thyroid drug ?
Do you have any readings there for a TPO: TgAB : TRab or a TSI ?
The Graves antibodies are best described as either a Thyroid Receptor blocking or a Thyroid Stimulating antibody and the last two listed above.
All things Graves Disease - elaine-moore.com
All things Hashimoto's - thyroidpharmist.com
Please let us help you with more facts - do you hae online access to your medical records and are able to see and scroll back through at your leisure to find the necessary information ?
Thank you - I don't know why I've been treated the way I have but I have always been subjected to this type of treatment from "medical professionals" I am kinda of short and always come across very pleasant in person so I think people feel they have some sort of right to abuse and walk all over me - its been a lifelong thing - even during my pregnancy over 20 years ago I nearly died because I was told I was "just getting fat" I went from 8st to 16st in six and nearly died from pre-eclampsia! I literally have a history littered with similar circumstances.
I do understand the condition fully and it's consequences as I have done nothing but research since being diagnosed but if I have no life left on medication I am struggling to see the point in taking something that makes me feel more ill than the illness itself .... this is day one of this awful medication and I feel worse than I did at diagnosis?! As there is no actual cure ..... i really can't see the point to any of it to be fair
Looking at your results I think the dose of Carbimazole much too high which is causing you unnecessary additional symptoms :
There is an alternative as already mentioned previously - PTU - an older, and thought better tolerated AT drug and generally prescribed for those in their first trimester of pregnancy, thought you can be on it much longer term.
pubmed.ncbi.nlm.nih.gov/338...
Thank you for you r response - I will continue to cut the meds in half and see if I can adjust ..... I feel vile though .... I doubt the endo will prescribe me anything else I am well outside childbearing age fortunately ... my concern is my only happiness in life is my motorcycle but I can't lift my arms to ride it how I am currently feeling
No, it's just an older AT drug that was used for everybody and anybody -
it's just that Carbimazole has become the market leader - and maybe younger endo's aren't aware of it - sorry if I confused you.
Most days i just confuse myself !!!
I'd quarter those tablets and ask about PTU as you can't tolerate the Carbimazole :
quarter them as of tonight? Or see if I improve over the weekend ….? They were quite hard to break last night - I took it before bed so I wouldn’t get too many issues 😂😂😂 it appears I was wrong … again 😂
You are not wrong -
it's a learning curve and most of us have been there before you in some shape or form.
Endocrinologist should have tested TSI or TrB antibodies to confirm Graves’ disease (autoimmune hyperthyroid)
Please add results and ranges of tests been done so far
ALWAYS test thyroid early morning for highest TSH
You need TSH, Ft4 and Ft3 tested
Also TPO and TG antibodies for Hashimoto’s (autoimmune hypothyroid ) Hashimoto’s frequently starts with transient hyperthyroid levels and symptoms
EXTREMELY important to test vitamin D, folate, B12 and ferritin too
Low vitamin levels are extremely common with autoimmune thyroid disease
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
List of private testing options and money off codes
thyroiduk.org/getting-a-dia...
Medichecks Thyroid plus TPO and TG antibodies and vitamins
medichecks.com/products/adv...
Link about Graves’ disease
thyroiduk.org/hyperthyroid-...
Medichecks Graves Disease antibodies test
medichecks.com/products/tsh...
Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins
bluehorizonbloodtests.co.uk...
Only do private testing early Monday or Tuesday morning.
Link about thyroid blood tests
thyroiduk.org/getting-a-dia...
Link about Hashimoto’s
thyroiduk.org/hypothyroid-b...
Symptoms of hypothyroidism
thyroiduk.org/wp-content/up...
Tips on how to do DIY finger prick test
healthunlocked.com/thyroidu...
Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee
Thank you - I can't afford any private testing.
I can’t afford testing privately atm but does the GP or endo get a copy of those results? Or do they come to me to try and give the endo??
test results
Ah ha .. just found image of your results it's hidden itself at the bottom of the post.
with any thyroid medication (whether it's taking thyroid hormone replacement (Levo ) or antithyroid medication ( carbimazole) ... you can't asses how taking that dose will feel during the first few day and weeks ... you need to be on a stable dose for a few weeks and asses how you feel over that time .. don't assume every day will feel as rubbish as day 1 (or week 1) does. .
My issue is that I can't go on like this for weeks and weeks as I am struggling to function I live alone so there's nobody to help with the dog etc
so test confirms you do have Graves’ disease and it’s important to bring Ft4 and Ft3 levels down with Carbimazole
Exactly what dose have you been prescribed?
Request GP test vitamin D, folate, ferritin and B12 now
I have been prescribed 20mg and there's not a single chance - regardless of outcome- that I am taking more than my half dose (10mg) when I already feel like this.
There is no longer a relationship with my GP and I will not be returning under any circumstances.
What vitamin supplements are you currently taking…..if any?
Important to stop any supplements that contain biotin 5-7 days before test as biotin can cause false results
I was on Lemon Balm, Motherwort and Bugleweed however I have stopped all of that now - I always try to get what I need from food (I eat a lot of salads) ... although I have struggled to eat anything today ... I guess as long as I can try and eat one meal a day that'll do and it's only salad so lots of vitamins
Thyroid patients frequently have gut issues because thyroid hormones are out of balance, poor nutrient absorption and low vitamin levels as direct result regardless of how good our diet is
That’s why GP should test vitamin D, folate, B12 and ferritin levels
Request testing now or with next thyroid test
Always test early morning
thank you - unfortunately I am not being managed by a GP and the endo seems reluctant to do much other than test the T4 and TSH ... this is the second hospital I've been referred to so I am not hopeful ... i asked the endo yesterday if he had any other advise except taking the medication ie dietary changes like less iodine and he said there is nothing I can do and zero scientific evidence to support anything of that nature. I think despite me working within the NHS it's not going to support me moving forward unless I simply comply, shut up and go away ....
Plenty of good quality protein like grass fed meat, oily fish and complex carbohydrates
Avoid beige carbs - cakes, pasta, etc
You will see that thousands of thyroid patients find strictly gluten free diet helps or is essential
But NHS will rarely volunteer to to coeliac test, and highly unlikely to suggest gluten free diet if test is negative
There are a very few enlightened endocrinologists who do advocate trialing gluten/dairy free diets
Low vitamin D is virtually guaranteed with any autoimmune disease
Important to test and supplement to maintain OPTIMAL levels
I got scared off supplements when I read about them being harmful to overactive thyroid ... so I only take selenium for my eyes .... just order more L-Carnitine as I think that might have helped when I took it previously but not sure .... do you recommend a particular vitamin D supplement? although I think last year when I was diagnosed I was within normal ranges for B vits etc ...
You are legally entitled to printed copies of your blood test results and ranges.
The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results
UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.
Link re access
patients-association.org.uk...
healthunlocked.com/thyroidu...
In reality some GP surgeries still do not have blood test results online yet
Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.
test vitamin D first before starting supplements
NHS easy postal kit vitamin D test £31 via
Eating just salad isn't an adequate diet.
Everyone needs fat and protein in their diet, which are two of the three macronutrients that humans can eat.
Carbs are not essential but people with thyroid disease do better with some complex carbs in their diet e.g. vegetables and pulses rather than simple carbs like cake and ice cream, but fat and protein are absolutely essential.
Personally, I always try to eat fats and oils that people somewhere on the planet would have recognised before the Industrial Revolution. I don't want to eat lab-created fats and oils like vegetable oil or cook with such stuff.
thank you - I incorporate raw vegetables in my salads (carrots, spinach or kale), tomatoes and a little fruit (grapes and kiwi), a couple of crushed walnuts, pumpkin seeds and drizzle a little olive oil over the top ... I've never been a fan of dairy and carbs anyway ... I'll miss my dark chocolate but I have cut out sugar (it was mainly honey in black coffee and chocolate but I have stopped that now) I'm not giving up my black coffee in the morning .... I used to have a diet coke addiction which whenever my numbers have gone down appears to be when I've not been drinking it and then when they've gone up again I have been drinking it .... this is the only connection I can make with my diet .... I have experienced a lot of trauma in my life and where I live currently is a major trigger (I get harassed a lot by neighbour kids, because I am single, with a lumpy old dog and a female that rides motorcycles and I had a nightmare neighbour previously and the current ones aren't the best although I wouldn't complain). So obviously I am aware that stress is a big factor in my life, but little I can do to change that until I can move .... I don't smoke (ditched that nearly 3 years ago) and I don't drink - never been a fan .... I walk my dog three times a day but I don't do any other exercise any more due partly to the thyroid and partly to being a little unsafe to go out on my own where I live at certain times of the day. I am hoping to start swimming or cycling or running again one day ....
sorry I should have said I am obviously scared of gaining even more weight than I have already with this disease as I can't afford to replace clothes so very keen to keep intake to an absolute minimum ... and I am not a fan of meat or fish, I have only eaten it to satisfy others .... I am not a fan of it myself
So iron and/or ferritin quite likely low if rarely eating meat or fish
I eat a lot of nuts though and veg which contains iron …? Don’t vegans get their vitamins from veg … I’m not a vegan or vegetarian btw I’m just not a fan of meat or fish and I go off it in a big way when I’m due on .. like it makes me feel ill… no idea what that’s about 😂
vegans and vegetarians are often vitamin deficient, especially in iron, ferritin and B12 unless testing and supplementing
Never supplement iron without full iron panel test for anaemia
hsph.harvard.edu/nutritions...
thank you - I guess I’ll see how my next GP is if I get to move next month … 🙂
also I’ve just measured my salad glass containers and they’re quite big … 5.5cm deep 10.5cm across and 16.5cm long .. that’s a big portion and takes some time to get through it
the last date is wrong on my spreadsheet it was last week rather than last month …
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