Hi all, I'm new to this forum and this is my first post, so here goes nothing ☺️.
I was diagnosed with Graves disease today after a blood test to check my thyroid functions (I was experiencing hives and facial swelling whenever I get ill for 2 years now so GP suggest a blood test)
I'm slightly confused and worried about what's to come and expect. My GP stated that after consulting a colleague of hers they decided to start me on carbimazole 15mg while waiting for Endo referral as my levels are high and they need to bring them down.
Now that I read about Carbimazole I'm scared of taking it as I read horror stories about puffy/ bulging eyes since starting to take it. Sobmy first question is, does it cause bulging eyes? It seems to be the case with A LOT of people.
My second question is regarding weight gain. Initially, I hadn't had any weight loss symptoms (or graves disease symptoms for that matter) if anything, I've been trying to lose weight for years and I'm struggling even though I exercise and eat healthy. Does that mean I'll gain weight on carbimazole? I can't bare the thought of gaining more weight 😫. Any advice please?
Lastly, do people find that weight loss isn't necessarily a symptom of Graves/ hyperthyroidism? Thank you all for making it this far and reading my post, I appreciate any input or advice 😊
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First step is to see EXACTLY what has been tested and get the actual results and ranges
To definitely confirm Graves’ disease (autoimmune HYPERthyroid) your GP must test TSI or Trab antibodies
Autoimmune HYPOthyroid called Hashimoto’s frequently starts with temporary hyperthyroid type results ……..before becoming increasingly hypothyroid. We see a small, but significant number of Hashimoto’s patients initially misdiagnosed as having Graves’ disease
What are your main symptoms
Have you got any test results
For full Thyroid evaluation you need TSH, FT4 and FT3 tested
Also both TPO and TG thyroid antibodies tested at least once for autoimmune HYPO Hashimoto’s
You can have slightly raised TPO or TG antibodies with Graves’ disease as well
Very important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common with Graves or Hashimoto’s autoimmune thyroid 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)
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. Easiest option is NHS app, you may need "enhanced access" to see blood results.
This currently only applies in England, not across the whole of the UK. Nether Scotland nor N.Ireland have released an NHS app for patients. (Scotland supposedly due in December '24.) Wales has an app, but only for booking appointments, repeat prescriptions and amending personal details
Thank you for your reply 😊 I had all these tests done. I'll see if I can attach the number below. I basically had a thyroid test done, a full blood count (ferritin came back low as well as my neutral WBC but GP said she's not concerned) and a hemoglobin test done (all normal) she said all the test related to my thyroid were off. I have the test results on the NHS app as well which is handy.
Thank you for your reply, it'd be interesting to find out exactly what it is (Graves or Graves+H)I had the TP antibodies concentration done and got 72 (0.0_34.0) which says high. I have not had the vitamin D, folate and B12 done yet. Do I request from the GP or Endo? Thank you
Those levels are not too high so should start to get into the normal ranges soon. I find that the TSH usually lags behind with Graves and might never reflect what your T4 or T3 are at. My TSH stopped working years ago so I now go by my T4 and T3. Of course if my TSH became surpressed again Iveould have to start taking PTU again.
Hi , just to reassure you about the bulging eyes (Thyroid Eye Disease ~ TED ) these are not caused by taking carbimazole.
TED is caused by graves disease , but not everyone with graves gets TED, so TED may or may not affect you , but taking carbimazole won't make any difference to your chances of getting it / or not .
it's best not to go looking at picture of TED .... even people who do get TED don't always get it that badly .
just tagging some forum members who have lots of experience with graves / use carbimazole , so they will see your post and can hopefully reply later... (they will probably have gone to bed by now) pennyannie PurpleNails
Terrible isn’t it? I can assure you that is a rare occurrence and I have never looked like that in 15 years. I have also collapsed with a thyroid storm but I always looked fairly well that’s why doctors thought there was nothing wrong with me for 2 years!
Starting on carbimazole 15mg, is a fairly appropriate starting dose for levels. It’s important to recheck levels no later than 6 weeks. Sooner if symptoms alter in any way. The dose often needs adjusting. So if endocrinology isn’t monitoring at that stage, GP should be. TSH can remain suppressed, so important to test FT4 & FT3 & tweak carbimazole by FT4 & FT3.
TattyB is correct - carbimazole will not affect your eyes. TED is related to autoimmune thyroid disease. Stable thyroid levels is the most important factor for helping TED & being diagnosed & starting treatment is the most likely time for unstable / fluctuating levels. This is why TED is often diagnosed soon after starting Carbimazole.
I have a long post on advice about TED. I find it & add it tomorrow. Ask for referral to ophthalmology. The eyes & thyroid will be monitored by separate specialist.
Weight is an individual thing, we are told we typically loose weight when hyper & regain it once levels stable. If we become accustomed to larger appetite we tend to gain more. Personally I gained weight when hyper ( the appetite & low energy) lost weight when levels back in range & well.
This is extremely helpful, thank you. I'm worried that the fluctuation would trigger TED, do you think the Endo will refer to Ophthalmology? I'm hoping I'll be like you and lose the weight once treatment starts, but I'm feeling more and more confident about starting Carbimazole thanks to all the helpful suggestions and reassuring thoughts. Thanks 😊
Referral to ophthalmology won’t be automatically offered. You would need to experience suspected eye issues.
If you develop any eye symtoms request referral via GP or specialist. They should be checking / warning of potential but this is often overlooked by medics.
This is the info I collected about TED. You may only need to skim through & keep the information for future.
Info on TED.
Signs are
* Change in the appearance of the eyes (usually staring or bulging eyes)
* A feeling of grittiness in the eyes or excessive dryness in the eyes
* Watery eyes
* Intolerance of bright lights
* Swelling or feeling of fullness in upper or lower eyelids
* New bags under the eyes
* Redness of the lids and eyes
* Blurred or double vision
* Pain in or behind the eye, especially when looking up, down or sideways
* Difficulty moving the eye
GPs & Endocrinologist should be knowledgeable about related eye issues but often slow to recognise. I found high street opticians helpful & can write a letter for referral & recommends drop. Drops should be preservative free.
These are other tips to help your eyes, they are safe options to do even if you don’t have TED diagnosis.
Taking a selenium supplement is said the help protect eye. 200mcg for up to 6 months. Then reduce to 100mcg. Can be brought over the counter. Bear in mind selenium rich food can take you over the maximum requirement.
*Preservative* free eye drops & wipes. Rotating different brands seem to help. Liquid versions for daytime & gel versions at nighttime.
I recently been using ocufresh carbomer lubricating eye gel - this is a light gel melts quickly.
For when eyes are dry I use warm compresses (eg wheat bags, microwaveable gel masks). Very gentle massage toward lash line, can use fingertips or carefully with roller ball tool or gua sha facial stones. Warmth & message “unclogs” the blocked Meibomian Gland (tiny glands along lash line) and allows lipid oil layer to flow. This protects eye and helps retains the water.
If swollen, inflamed & more painful, I switch to cold compresses.
If you like to moisturise near your eye area use water based clear gels not oil / cream. I did this as developed milia white spots round eye. I found the puffiness & swelling reduced when I switched.
Serious complications with vision or changes to eye appearance are very rare. Don’t Google and panic over worst case scenarios, they are always the most severe examples.
It can help to keep a photo record of eyes eg take a photo every 2 or 3 weeks. Try not to obsess. I hid images behind a cute kitty album icon.
Many report TED triggered or worsened when thyroid levels are low / high or fluctuating. So the sooner your levels are stable & under control the better for your eyes.
TED charitable trust is an Informative site about TED & symptoms. They have Facebook page & you can join.
I have talked to many people with Graves’ disease over the years and only a couple had TED. Now you are taking Carbinazole your levels should begin to drop and everything will settle down
That's very helpful, thank you. Yes, I made the mistake of googling TED and freaked out. Fingers crossed carbimazole does its magic. Thank you once again 🙏
You are welcome and hopefully you will try for remission after about 18 months. Don’t let your doctor persuade you to have RAI or your thyroid removed you can take Carbinazole for many years. I know some who have taken it for 10 years or longer and are feeling fine Doctors want to kill your thyroid because it is easier to treat hypothyroidism than hyperthyroidism. Don’t do it I still have my thyroid after 15 years
Here is a link to an American site the owner Elaine Moore is a Graves’ disease sufferer. Her site has helped me a lot over the years
I was told not to have it removed by a family friend who was also diagnosed a few years ago. She said its not worth it and she continues to take her medication.
My next question is diet wise, from what I've read you have to cut out eggs, dairy, wheat, gluten and iodine rich food. What do I eat in that case? Seems very restrictive 🥲
A lot of members find cutting out gluten and dairy can help with symptoms. You could try it and also get tested for celiacs disease. If you have one autoimmune disease you probably will have another. I don’t luckily but others have which can make things a lot worse unfortunately. I have a normal diet and I take vitamins D betteryou spray once a day and eat folate gummies. I have trouble swallowing because of my multinodular goitre. It’s worth asking your doctor for an ultrasound to check if you have any nodules Also check if your ferritin is high mine is and has been for years another nasty symptom of this horrible disease I don’t drink much coffee because of the caffeine and I rarely drink because it can affect my mood I hope all this helps you and you can message me anytime either on site or by PM
Thank you Elissa, that's very helpful. I have done a food allergy test all came back normal. I'm fine with gluten. My ferritin was low if anything lol and I love coffee (I drink 6 cups a day!)I was told by my GP that I might have a scan by the Endo so I'll wait and see. Thanks once again.
Graves’ disease buddy here - for ME it was high AND low levels of thyroid hormone that caused eye issues although when my levels are about right those symptoms go away. Carbimazole itself doesn’t cause bulging eyes it’s the antibodies that attack the eyes which cause this - hence my experience.
Carbimazole brings your levels down and has no “auto turn off switch” ie it doesn’t know when you go too low for you therefore if you go too low for you, like hypothyroid patients you could experience weight gain, I did when I went below my own personal range HOWEVER I also GAINED WEIGHT with graves. I have never experienced hunger like it and coupled with the crippling fatigue and breathlessness this left me unable to exercise as I had been able to previously which left me heavier than I was but I also experienced this when my levels were pushed too low for me. As my meds have slowly been lowered my weight eases. Don’t panic whilst your body adjusts to it all - I did and made myself a lot worse.
Carbimazole for me has not been fun as I’ve suffered with about every damn side effect there is but and it’s a big but because it’s mine 😊 it can be a bit of a life saver for a lot of people. The consequences from ongoing high thyroid levels are pretty catastrophic.
The most important thing is that you get regular blood tests and shout loudly to your healthcare professionals if you experience unwanted or worrying side effects and make sure you post on here, everyone will try and help.
For you though right now it’s important to acknowledge that you are a bit poorly atm and therefore you need plenty of rest, good nutrition, reduction in stress (very important) and gentle enjoyable exercise - you got this 💪🥰
Graves is an unfortunate name for this Auto Immune disease and named after the man who discovered it - Robert James Graves - and is a poorly understood AI disease that generally only gets diagnosed when the immune system starts attacking the thyroid and or eyes.
Your thyroid hormones T3 and T4 are only just outside the ranges and probably why you have so few symptoms - but with positive and over range Thyroid Receptor antibodies ( TRAB ) this is the medical evidence needed in order to have made the diagnosis of Graves Disease and prescribed and started treatment with an Anti Thyroid drug.
All the AT drug does is semi-block your new, own , daily thyroid hormone production and slowly your over range T3 and T4 results will fall back down into range and the dose of the AT drug adjusted down to try and maintain your T3 and T4 at around mid point in the ranges -
while we wait for your immune system to calm back down again
With over the range thyroid hormones you may have symptoms of hyperthyroidism and similarly with low - though in range thyroid hormones you may well have the equally disabling symptoms of hypothyroidism - as both extreme ends of the ranges can produce disabling symptoms -
if you go into Thyroid UK - the charity who supports this patient to patient forum you will find a list of symptoms experienced when the thyroid malfunctions - which you might find useful -so to know where you are in the somewhat confusing hyper / hypo thyroid myriad of symptoms - as well as, obviously, read up about all things thyroid related .
The NHS generally allocate a treatment window of around 15-18 months with the AT drug during which time you should receive regular blood test check ups every 6-8 weeks - and the longer you stay on the AT drug and better the longer term outlook will be for you - and I detail below the most recent research we have -
Graves is said to be life threatening if not medicated, as the T3 and T4 keep rising higher and higher and a beta blocker is also prescribed should your heart become involved -
There are 2 AT drugs - so please read the Patient Information Leaflet within the box ( PIL ) - and if Carbimazole does not suit you ask to be switched to Propylthiouracil ( PTU ) :
There is no cure for Graves Disease and it seems to be poorly understood as no 2 people seem to have the same set of symptoms - though we do know that Graves tends to be stress and anxiety driven, but management with an AT drug works very well for very many people.
There can be a genetic predisposition with Graves with there being a family member, maybe a generation away from you with a thyroid health condition and can be ' triggered ' by a sudden shock to the system, like a car accident or unexpected death of a loved one - though for some people it seems to be a mystery as it is for some in the medical profession.
However there will be some who need to have definitive treatment and lose their thyroid as their symptoms are unable to be controlled well on the Anti Thyroid drug and especially so for more complicated issues when the eyes are involved and under excessive pressure.
The most rounded of all I researched ( though too late for me as I had RAI thyroid ablation back in 2005 - when I knew nothing ) is that of Elaine Moore - books and website - and you might like to look into the life style and holistic / alternative treatment sections -
Yes mine was triggered by the death of my best friend from a brain tumour. She was only 46 and left a husband and 2 teenage children. I still miss her now😢
I'm not sure what triggered mine, but we do have a family history. I started to break out in hives and have facial swelling whenever I get ill after contracting covid 2 years ago. I'm not sure if that's what caused it as the hives is the main reason I finally had a blood test 2 years later.
Can I just ask who in your family has a diagnosis of Graves and / or Hashimoto's and / or takes or has taken an AT drug and or taking thyroid hormone replacement ?
My maternal grandmother, my maternal aunt and her daughter (my cousin) as far as I know these are the people closest to me who had overactive thyroid not sure if it was graves disease or just overactive thyroid. As far as i know they didnt have hashimoto's but after the hyperthyroidism treatment they had hypothyroidism which they had to have treatment for as well. Do you mind me asking why? Does it affect anything else?
OK - so did they all have definitive treatment either a thyroidectomy or RAI thyroid ablation and then became hypothyroid and all now take thyroid hormone replacement.
No - I'm just interested as I write about there likely being a genetic predisposition and it's good to know that for some people what I write has some relevance to them.
It doesn't change anything but guess it could be consideration going forward if of an age and wanting to get pregnant.
Newbie_85
There is no information on your Profile page so maybe when you get a minute you might like to complete this as it helps us having your age and listing any health issues etc when you ask questions months later and we need to remind ourselves quickly of your situation.
As far as I know, yes. My grandmother had RAI then had hypothyroidism. My aunt I know just used oral tablets, not sure what it is called but she stopped them as they never got the dose right and she decided to stop them. My cousin as far as I know still takes the tablets, not sure if she has hypothyroidism though.
I am half Irish and a lot of Irish people have thyroid disease because of the potato famine. After researching it seems people who have descendants who were suffering from famine have thyroid disease
It’s the Irish ancestry in my family where an assortment of thyroid disorder seems to emanate from, but as far as I know the ancestors left Ireland before the potato famine. Maybe it is embedded more deeply in the Celtic dna the surnames were what I’d call Scottish so perhaps they were only Irish by relocation but I can’t know for sure. My dna shows up in part as Irish on 23&me and where my ancestors came from - Waterford.
Link was interesting and led to other papers I’d like to have read especially about the evolution of the thyroid gland in other species and us but but hit paywall barriers to access ☹️
I have had recurring Graves for 20 years. I also have irritating skin issues these have got worse with age.
I also take carbimazole 10mg which I've been v reluctant to do as it gave me such a horrendous itchy rash. However my consultant gave me a lecture about heart disease,stroke and osteoporosis so I gave in and for a while took antihistamines along side.
My body has adjusted and I was able to ween off them.
Now been on it for just over a year no side effects bar the dreaded weight gain.
So unless your v lucky you may gain weight. I'm in a constant battle with mine now.
I eat roughly 1/3 of the calories I did 18 months ago. If at any point I eat what most 'normal' people do I gain.
So I'm learning to do no sugar no carbs it's the only way you get used to it.
I'm also post meno which doesn't help.
I would say do the treatment you'll feel better.
Just try and modify what you eat less than the recommended calories for a female I try and stick to no more than 1000 a day.
Thank you for your reply. I'm on fexofenadine for the last year, I take 3 tablets a day based on the GPs advice yo stop the hives and facial swelling. I was told to keep taking the antihistamine with Carbimazole as they think the hives will get better or disappear altogether once we treat my graves.
I was told to keep taking fexofenadine with carbimazole as it helps. I'll try it out if it affects me too much I might ask to switch to PTU. Thank you for the suggestion
Just to reassure you about carbimazole- my experience was that, apart from the tiredness, I felt very well on it. Didn’t affect my weight, however this may vary between individuals.
Recommend you liaise with pennyannie if you are offered further more permanent treatment.
hi. Just to let you know I was diagnosed with graves in 2014. I was also initially scared about my eyes too but mine have never been affected. I know that smoking can be implicated in the development of TED so I was glad I didn’t. I also remember my endo telling me that less people nowadays seem to develop graves (he didn’t know why) but it was reassuring to hear. Good luck but there’s every reason to be positive.
Hello! I was diagnosed with Graves’ disease in March 2021. My levels were extremely high and I started on 80 mg of carbimazole daily, reducing to 5mg daily over 1,5 years. I tolerate carbimazole very well except weight gain (I put on over a stone on tablets). I came off medication and had no problem for 1.5 years until in March 2024 I had another attack and had to restart medication. I’m now down to 5mg again and blood levels are ‘normal’. My consultant wants me to consider surgery to remove my thyroid or RAI, both of which I’m so reluctant to do as I feel great and my graves is managed well on medication. Any advice? Consultant says I’m too young (40) to be on long term carbimazole as there is no medical research into long term side effects. Thanks!
Very much understand why you posted that reply - and it might help the original poster.
However, for yourself, I suggest you write a new post so that replies to you don't get interspersed with replies to the original poster and, possibly, cause confusion.
Please don’t worry about Graves’ disease, you will find excellent and reassuring advice from here just like I have and still do. I have had Graves’ disease for 3 years and currently in remission and no longer take medication and still have regular blood tests every 12 weeks. It’s a bit of a journey but 10 days in from starting on carbimazole I started to feel so much better and have recovered well. Don’t worry about taking carbimazole it’s there to help you recover and a lifesaver for a lot of people so take it as prescribed and I guarantee you will improve quickly, I couldn’t have managed without it and didn’t get any side effects and hopefully you won’t either.
Hi and welcome. Carbimazole is the usual treatment for an overactive thyroid and Graves. The bulging eyes come with untreated thyroid problems, not with Carbimazole. I had Carbimazole for 6 months for my Graves in 2012 ( my antibodies were over 1300 when the range is 0-60) but this did not control things so in the end I had radio active iodine to sort the problem. I am now on 100/125 levo on alternate days and am fine. At least your GP is doing the right thing with an endo referral. Good luck
I hope my blog on Carbimazole might help a little:
helvella - Splitting Carbimazole Doses
A short discussion about Carbimazole primarily focussed on splitting doses but containing other information which may be helpful to anyone taking, or considering, Carbimazole.
There's some great advice here so I just want to address the weight gain specifically...
I was Hyperthyroid, officially diagnosed with Graves (though my antibodies actually indicate Hashimotos), and overweight.
I had lots of symptoms but the weight gain is what was effecting my mental health the most, and my main priority.
Taking Carbimazole and bringing my thyroid into normal range has helped me to begin losing weight for the first time in 5 years.
For many people, it seems, having an overactive thyroid causes them to eat too much, and not have the energy (or will) to exercise enough. Therefore, we got fat instead of skinny like the internet claims we should have.
I've got a long way to go but for the first time in 5 years, I'm eating healthily, exercising, and slowly losing weight. I no longer have the urge to eat cake all day! It's such a relief.
I didn't take Carbimazole for long, and there are so many nuances here, I'm not saying you'll be the same... but I just wanted to reassure you as someone else who gained weight from an overactive thyroid, that Carbimazole did not cause further weight gain. Bringing my thyroid (and perhaps even more importantly, my vitamin levels) into range is helping me to lose weight.
Thank you so much for your reply. I feel like you were describing me 🥲 no energy, want to eat cake all day and even when I commit to diet I can't seem to lose weight! I'm hoping that'll mean I'll lose weight with Carbimazole. I'm glad you're feeling better and I hope you continue to do so 🤍
I had 5 years of that and gained nearly 5 stone - I completely understand.
For the last few months, I have been slowly adjusting my habits and incorporating some exercise. I'm not trying that hard - I'm really focusing on health instead of weight loss - but I'm nearly a stone down and it feels... permanent. I'm enjoying doing a bit of exercise daily and eating healthy foods. I still eat biscuits, and have dessert when I want it - but the absolute greed that came with the overactive thyroid has gone.
Try not to get too caught up in what is 'normal' - the NHS guidance has been so far from my own experience.
Hi all, just wanted to say thank so much for all the advice, reassuring replies and kind words. I feel so much knowing that Carbimazole will help my Graves.I was wondering does the weight gain on carbimazole still happens even if you're on a diet? At the moment I'm intermittent fasting and I ate between 1500-1700 calories a day and a very high protein diet, but still eat carbs. Do I need to reduce the calories further?
Also, a few of you mentioned you had an "attack" after being in remission, how do you know you had an attack? What are the symptoms? Or do you only find out via a blood test?
Can you please complete your Profile as to age and other health issues -
Your body needs good regular nourishment and I do not recommend counting calories or fasting -
The thyroid works best with optimal core strength vitamins and minerals - and the main ones here are ferritin, folate, B12 and vitamin D - so please ask your doctor to run these and then post the results / ranges on the forum in a new question -
Just being in an NHS range somewhere - is not where your optimal health will be - as some NHS ranges are too wide to even be sensible :
I doubt those who have replied will see this new question and suggest you always start a new post - especially after around 24 hours from first posting a question - so all forum members can start again to share and support your thyroid journey.
Hi Newbie, I have not posted here in a while. I have Graves Disease. Now, while my experience was not the greatest please dont be scared. This was my experience. Everyone who has Graves Disease experience things differently.
I believe my Graves Disease was brought about after the death of my Mother. I was 29 at the time, (died unexpectedly while taking care of her due to a fall she had weeks before) and suppressed feelings and not dealing with or got the help I needed at the time when my dad died at 11 years old. I found my Dad after he suffered a heart attack with my sister.
Stress also was a huge factor too for me. I was an Acting Manager of a Community Preschool. I started this role four months after my mothers death.
My TPO levels were high. I had lost alot of weight. This was my first symptom along with rushing around like a jive bunny on speed. Very tired. Would fall asleep with a drop of a hat. I was put on Neomercazole at first for six months as I wanted so much to have a child. The endocrinologist wanted me to block and replace therapy first but i said no. I was very Niave back then thinking id be better 'overnight'. Now I knew why I was having issues conceiving.
After the six months I started the block and replace therapy for 18months. Took me off everything and symptoms returned 4 months later. It was horrible. I went back on just a low Neomercazole (5mcg) for a while as the endocrinologist at this point wanted me to have RAI. I wanted my thyroid out but was told it wasn't possible. As he knew I wanted a child we waited on the RAI. The end of the year I became pregnant. I got RAI 8 months after I had my child, which I believe I shouldn't have. The RAI raised my levels further and was having awful symptoms for 2.5 months where doctors were not taking seriously. I eventually refused to be discharged one time. I ended up having thyrotoxicosis. Way too much thyroid hormone. The next year I got my thyroid removed. Treatment afterwards of the right medication was a battle. T4 meds was not agreeing with me. So I started doing alot if research. I found a Functional medicine doctor who listened to my theories and agreed to put me on T4 and T3. It changed my life so much. I forgot to mention I did get TED a year after my diagnosis of Graves Disease, symptoms were dry eyes and pain when moving my eyes. RAI made my eyes worse. They were very bug like for me. I did also end up getting a horse shield tear at the back of my eye( not sure if it was TED related) I can't be around cigarette smoke. It drives my eyes nuts. Smoking in general is not good for TED patients. T3 medication really improved the bug eye look for the better. I did gain alot of weight when on Neomercazole but once my thyroid was removed I lost all the weight. Once I've hit peri-menopause the weight has piled on a bit but looking back on photos after the thyroid removal I needed some of that weight I was too thin for my height if 5ft 8inches.
When you get one autoimmune disease you usually get another. I got 3 more. I ended up getting Pernicious Anaemia which took over 3 years to get diagnosed. I self inject b12 for life now. Have absorption issues. Have to get regular iron infusions. I also have Autoimmune Gastritis with Intestinal metaplasia. I have to get regular endoscopes. Take vitamins and minerals. I need to look after my gut health too. My thyroid levels have never looked so good and I feel great. Mood becomes low from time to time but I feel peri-menopause is not helping with that. HRT has helped alot and I get regular checkups to sort that out.
I hope I have not bored you at this point. My advice to you is research and research and do more research. Be your own advocate, keep copies of everything, question everything, and if you're not happy with something speak up. It's your body you now it best. I just wished I was my own advocate back then and knew what I know now. And listen to your gut even when it's screaming at you. It's telling you something. I ignored my gut feeling about RAI and it was the worst decision for me. Be better informed I wish I was.
If you've any questions don't hesitate to get in touch. I've experienced it all for nearly ten years. I could write a book as others on hear too with their experiences. Take care and try keep stress to a minimum.
This post above is actually me. I signed in thinking I was signing in but created a new account. Oopps!! So if the poster Newbie_85 you can reply to this account. My apologies to admin. I will perhaps copy and paste under this account. NotElissa yespecially I'm way better then I am. On Levothyroxine and Thybon Henning. My levels are good. I have to keep an eye on my calcium levels from time to time. Get regular endoscopes and iron infusions. I get my thyroid levels checked every six months now which before it was often. Getting the thyroid was the only thing for me it really turned my life upside down but through it all now. Hope you're doing good.
hi there, I’m fairly new and nowhere near as knowledgeable as others on here and tbh still don’t fully understand it all. But I was diagnosed with Graves about 8 months ago. My symptoms were sudden sweating and breathlessness.
The wait to be seen by endo was ridiculous so whilst waiting, I immediately went private and was put on Carbimazole think it was 10mg. After a week on it, I came out in the worst rash, thankfully not itchy and just from the neck down but it was truly awful, couldn’t be ignored. Was told to come off it and wait to be seen by endo. I rang endo a few times and stressed I was struggling with symptoms so they changed my referral to urgent and I was seen a lot earlier.
Had the thyroid xray (can’t recall the correct terminology, I’m post meno and blame that for my bad memory!) the one where you drink the dye. I did request an ultrasound too as almost 20 years ago my thyroid played up and I had the ultrasound back then and it was commented it was lumpy and bumpy but we’ll leave it alone! But was assured this time the ultrasound was unnecessary due to the xray and there were no nodules showing up.
Anyway I understand there’s only two tablets that are an option, carb which I obviously didn’t get on with and ptu which I’ve been on since, on the lowest possible dose (as I got pins and needles after it but turns out it wasn’t ptu causing it) but it means even tho I’m on the lowest dose my bloods are now and steadily in the normal range. So relieved this worked as I think the only option after that was to have the thyroid removed.
My understanding is it’s the Graves’ disease not meds that causes bulging eyes, never been an issue for me, my eyes are a bit dry but that’s meno.
Regarding weight! Prior to starting PTU I actively tried to lose weight and lost 2st from calorie deficit. Now, I’ve put it all back on. I’m spoilt for choice tho as to what’s caused that! I’ve come off hrt, post menopausal and also started anti depressants as graves caused so much anxiety for me. So who knows! But I’ll seriously address it when I hopefully come off ptu this year. (Been told they medicate you for 18 months then reassess and see how the thyroid is without med).
Sorry this is an essay but I will say the endo nurses (the consultant was a bit cold and dismissive) have been great and I have a phone call with them every 6 weeks and we discuss my latest (regular) bloods and any symptoms and I can call them if need be. So don’t be scared - even though it’s an incredibly scary name xx
A few reasons really. I had a premature menopause, was 39 when I had my last period. I’m now almost 49. I’ve asked numerous drs and consultants over the years how long would I take hrt for and they all said to the point where you would’ve reached menopause naturally, so early 50s.
But I’ve honestly not seen or felt any improvement with hrt so why take another med if it’s not doing anything for me. I’ve tried every single format too patches, gel, spray and tablets.
I get horrendous night sweats and hrt made no difference at all. I had a little scare recently where I thought I felt a lump in my breast but it was a mistake but that sort of made me make the decision to stop it altogether.
I know it’s fake news about hrt and breast cancer but I just thought I already hate taking meds for graves and anti depressants so I’ll discontinue the one that’s not actually doing anything for me.
I understand your concerns about HRT, but HRT is for life. You're not going to get those hormones back after Menopause. The doctor gave you the wrong information if you don't mind me saying. Menopause can cause alot of symptoms. Have you ever looked into histamine issues could may be causing you symptoms and not actually the HRT. I tried to put a link up but it's not allowing me but hope kay to mention the Irish Menopause group on FB is very well researched with over 60,000 followers if you've have not come across this page. Also I would check to see if you've any b12 concerns such as Autoimmune Pernicious Anaemia because that too can cause depression and so much more.
I’m in a few meno groups on FB, I’ll look at the Irish one, thanks.
My B12 is always within the nhs normal range, although it is towards the lower end.
Hrt has never caused me problems or symptoms, it’s just never improved my issues at all.
I was referred to the menopause clinic in my city years ago and it’s been an absolute disgrace tbh. I waited over a year then got a 5 minute call and she basically said tablets are the only one you haven’t tried so try that and I’ll speak to you in 3 months.
That was over a year ago and only just this week had a letter saying I’ve got a phone appt with them end of this month. I don’t even know what to say other than it’s been a disgrace x
I have had Graves for almost 25 years. Started out on methimazole (the US version of carbimazole) and had a reaction with hives to it. Went on PTU. My endo from day 1 wanted to do RAI and I said no, it seemed like a drastic decision to kill off something in my body. So for about 15 years, I was on and off PTU. I'd go in to remission, then start up on it again and do fine and go in to remission again. For some reason I switched over to methimazole again by introducing it in very small doses. I think it was because PTU was so expensive in the US and methimazole was cheap. I tried lots of supplements, I tried going gluten free, I tried accupuncture, tried a naturopath. Nothing seemed to really work except for the pills. And then slowly but surely, my thyroid seemed to kind of burn out, knock on wood. For the last 2 years, I haven't needed to take any medication. As you will hear from several people on the forum, the doctors mostly want you to do RAI. And sometimes that works great, especially if the pills aren't working for you or you have really bad symptoms. My symptoms were very classic, I could tell when my levels were off, I'd be really tired, my muscles would ache, my heart beat would increase and I would lose weight.
My biggest advice: do what you think is right for you. My sister-in-law did RAI and it worked well for her. She has no regrets. I didn't think my symptoms were bad enough to warrant killing off my thyroid. And I never had to take large doses of the drugs so I was never worried about hurting my kidneys or liver or whatever it is. My endo stopped bugging me about RAI when I sent her a study done in Japan about how they do RAI as a last resort and they have people on ATMs for long periods of time without any issues. I also found this one:
I also do my own testing between going to my endo so I know what to expect when I go in for an appointment. 😊
Oh and one other tidbit, I did have a couple times where I had a lot of hairloss. After it happened, I wrote down all the times I started and stopped ATMs and it coincided with that. I found that there wasn't anything to help with the hairloss BUT, it was really important to take vitamins and biotin to keep the hair growing. And the good news, I never went bald, it eventually stopped and all my hair grew back.
I pleased to hear you never went bald. I have been suffering with Graves’ for 15 years. I think as the years have past I don’t have the extreme symptoms I had at first. I have had about 3 remissions and at the moment I am slightly hyper. I haven’t taken any PTU since my initial diagnosis because my levels are not high enough and my TSH although lowish it is not surpressed like it was at first. At diagnosis my TSH was 0.002 Since then the lowest it has been is 0.38, The highest my T4 has been is at the top of the range which was 22. I actually feel very well with my T4 at the top of the range. We are all individuals and doctors don’t realise this. The only thing that has really upset me is my hair dropping out. It always grows back but it had been so thin i have actually shopped for a topper. Luckily my hair has stopped falling out at the moment I feel ok no itchy scalp or blocking the vacuum with my hair,
Thank you so much for taking the time to share your experience. That's very valuable information. I feel like I've learnt A LOT in the last 24 hours which is a good things, it's always good to be prepared. I'm glad you're feeling better now and I hope you continue to do so 🤍
I was diagnosed with graves 18 months ago. Treated with carbimozle until last month. I am now in remission. Don't be afraid of taking the medication recommended. Be more afraid of not taking it.
I had no major symptoms. Just the shakes before starting treatment. My eyes never bulged and I'm immensely grateful for the treatment and now having normal levels. I'm still being monitored, but without the meds.. I would not be where I am today.
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