Hi there , I am very new to this and I struggle at the moment as I’m falling apart.
The whole of December I been basically bedridden and was wondering if you could give me some advice for when I see my doctor. I have an appointment on the 8th and I really want to understand what he is going to discuss with me . Please bear with me whilst I tell you my story.
Since 2019 I had Covid 3 times all the variants and each time my period skipped a month. Since June I noticed at work I had brain fog and hot flushes as well as mood swings so I went to the doctor to discuss menopause in July . So the doctor recommend some tests before to rule out other illnesses due to symptoms similarities. So I was sent for tests.
Everything else came back fine except the thyroid results-T4 was 21.5 .I was told to have blood tests once a month. In October I had Covid again so in November surprisingly blood tests were fine (TSH-0,86 T4 -15,6 T3 5,7)
I was then sent to the hospital to check the size of the thyroid on the 4 December but NHS cancelled my appointment and rescheduled it for 20thDecember. So I then booked a blood test for 14th of December .
On the 3rd of December (I only remember because of the advent calendar!) I was at my desk at work and my legs started to go numb and to tingle . Then my chest began to hurt! I thought my bra was too tight as I was struggling to breathe. I got up and went to the toilet but it made very little difference! This chest pressure lasted quite a long time , I think it stared at 16:30 and stopped at 19:30 after I ate dinner . I thought that was very unusual and forgot about it as I had quite a lot of work to do. I went to work the next day with a headache that lasted the whole day. Next few days I stared to feel so unwell I went to A&E ( 8th dec) as my whole face was hurting. The doctor said I had a sinus infection and gave me antibiotics for 7 days.
I went for my blood test on Thursday 14th and on Friday an endocrinologist phoned me from the hospital to ask me how I feel????
The results T4-110 , T3>30,8 ,TSH less than 0,02.
Told me to finish my antibiotics and to take Propranolol 10mg /3times a day and ibuprofen 400mg /3 times a day and to have another test in a week. That week I was a wreck, I was so bad my resting heart rate was over 100 bpm reaching 155 whilst lying in bed. This made me so tired and fatigued I was basically bedridden. Then my eyes have swollen and have developed a sensitivity to light. I had cold sweats also . Sharp pains in the heart as well as palpitations and chest pressure I also experienced daily. Further I was struggling to eat and had a lump on the right side of my neck. My feet whilst lying in bed went numb tingling and felt really hot like a burning sensation several times.
I had cramps in my calf and sharp pains.
I had basically the week from hell! I actually thought I was going to have a stroke multiple times. I even took bigger doses of propranolol but it made no difference. After I was taking the tablet the heart rate for instance dropped down to 58 and then went up to 112 . It fluctuated terribly.
After I had my blood test the following day the doctor called me and I told me that T4 was 80 and T3 still >30,8 and he told me it could be 37 or 300 !!! I told him what I experienced . He said that my body is now toxic and I will experience all sorts of symptoms. He put me on CARBIMAZOLE 30mg once a day. I take them in the evening at 20:00.
Since I started taking the tablets I feel a bit better . My eyes are not that swollen anymore and the lump from the side of my neck is now gone away. However on day 1 a rash appeared on my back. And on day 4 I woke up with a sore throat and blocked nose .I now struggle to sleep and I basically have insomnia as I stay up all night and then I sleep from about 7-13:00 . My body is itching all over and the rash has spread from the back to the stomach and even the bottom .
I wonder if is from the tablets. And if it will be a better idea to take them in the morning?
Today 29th of December I still feel awful. I woke up at lunch time and I went to cook a little something and this numbness in my feet now appears when I stand . I am exhausted almost as soon as I stand up. I also lost weight this past few weeks about 1/2 stone which is probably muscle as I feel so weak.
The appointment on 20th was cancelled as well due to the strike ! I am now going private on the 8th which is funny as I will see the same endocrinologist that I spoke with and who gave me treatment over the phone .
I am now gluten free /dairy free and I’m looking to step up to Paleo or Gaps as I think it will help with the thyroid long term. I am worried that I may actually have Graves as I have quite a few symptoms. Not sure if Covid made my thyroid worse or not but nevertheless after it I felt a bit different! I had the vaccines and I believe because of it I recover quicker from Covid and I’m not so sick.
Did anyone went private for thyroid treatment and is there a difference compared with the NHS ?
What other tests should I do based on my symptoms?
I really want to help myself get better as I hate being so ill. 😞 I just turned 44 before Christmas and I feel I still have so much left to do ! I don’t want to be crippled by pain and I want to enjoy life. I also have a wonderful career that I don’t want it to end .
Please spam me with suggestions as I know nothing ! The past week I joined the forum and all the advice I read here is always sound !
Many thanks for reading my story and sorry for the long thread !
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Danathediva1
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Those are very high thyroid levels so Graves is very very likely, but to confirm you have continuous hyper you need to have either of these 2 types of antibodies tested.
It’s not an over reaction to attend A&E if you can’t arrange urgent help any other way. From the sound of it you have developed a sore throat & the advice is you should have FBC full blood count before continuing treatment.
Well I’m very relieved they did a FBC for you & it was ok. Nurse was wrong to say otherwise. Sounds like you needed the antibiotics urgently besides checking the cell count. It can takes days / weeks to see GP.
You could also try antihistamine for the rash, as well as following drs advice.
Splitting carbimazole dose also recommended early on in treatment. It closes the length of time that the thyroid begins to start producing again & might help with the rash as spaces out strength of dose.
I fully agree with Purple Nails that you should go to A and E if you cannot be seen quickly.
Concerning your eyes, 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.
Thank you ! Do I need prescription for the eye drops or are available over the counter? Yes I’m taking ibuprofen 3 times /day! Thanks for the pillow trick will try it tonight
The eye drops are available over the counter- use liberally as dry eye is awful. Definitely try selenium too, as these have proved to be beneficial to many (although do remember not to exceed 200ug per day as a supplement, as high doses can be toxic).
I also took photos of my eyes (& kept in hidden on my phone) as it useful to show ophthalmologist/ endo and track progress.
It worth contacting TEDct (charitable trust) as they have lots of useful information & helped me find a TED specialist ophthalmologist in my area.
Please don’t overdo it on Google…. Remember they showcase worst case scenarios. My eyes massively improved, so pleased be reassured. Do keep posting, we are here to help & support you 🦋
I think people who are or have been hyperthyroid usually suggest splitting the carbimazole or other anti-thyroid drug into 3 or 4, and spread them throughout the day.
Since you have developed a rash this could be due to taking too much at once, but it could also be a bad sign that your body isn't tolerating the drug.
Thank you ! I’m at the A&E and the nurse just told me off that this is not an emergency and can be done by the GP. I will see a doctor soon but I am unsure if they will do a full blood count.
Good luck - but don't put up with the problems you're having with the carbimazole for very long - I think having side effects with carbi is severely damaging to the liver - but I'm not totally sure, and I'm not a doctor, so read the PIL (Patient Information Leaflet).
Just reading your post now 👍 and I know how you feel, I to think you might have graves disease, my gp left me for over a year with awful symptoms stating it was my menupausal state.
I really don't know I survived that time because I honestly thought I was dying, my symptoms started with sweating hence the gp saying it was menupausal, but I went on to have palpitations, shaking, tremors in my legs/hands, I lost weight had bad headaches, if I ventured to the kitchen or bathroom it felt like I'd ran a marathon, my heart would thump out of my chest which made me feel faint.
I collapsed a number of times until the last one when my son got me to the surgery yet again, just saw gp 4 wks previously and we're sent packing with menupausal symptoms 😡
Saw this new GP who took one look at me and told me I was hyperthyroid, unfortunately the propranolol didn't work for me nether did the anti thyroid drugs.
I went into thyroid crisis and were rushed into hospital where it was found my T4 was 100 my T3 was 39.5 and my TSH was undetectable, I was thyrotoxicosis, my ward doctor (lovely gentleman) arranged for thyroid antibodies and an uptake scan.. Diagnosis graves disease thyrotoxicosis.
I can't believe how stupid some, or if not all these endocrinologist and gp are 😡
I was told in A&E I was so lucky my sister in law came to see me and called the doctor, I was in a part coma, the A&E doctor said its very dangerous to leave a patient with high levels of T4, T3 🤷♀️
You need to be forceful and demand the correct bloods (thyroid antibodies) and the uptake scan👍
Thank you so so much for your reply and for sharing your experience. I’m so glad to hear you are better and got the right care you needed. I hope I will be too as I am really struggling!
I do not believe after reading your post that I been given the appropriate care by my endocrinologist now . I was so sick and he left me to fend for myself with some propranolol and ibuprofen knowing how high T4 was —110 ! It was not slightly off the range for crying out loud!!That week I was so ill I thought I was going to have a heart attack any minute and I told him that !And the following week T4 was 80 so again very high and my eyes were affected plus endless other symptoms! Gave me Carbimazole and told me if I have side effect to go to A&E.
I was so concerned for my health I posted on the group a novel with my symptoms and what I could do to get better trying to get some answers!
I will forever be grateful to the people who answered and send me to A&E ! I don’t think the tablets are working for me either .
My eyes are very painful with the right eye being really swollen . My resting heart is in the 90bpm range and I’m still very fatigued and tired.
I will be more forceful now that I know what I’m dealing with !!
It's possible you have graves eye related disease to TED.. I was fortunate no to have it, but my eyes were alway gritty and sore but didn't protrude out of there sockets as in TED.. As you probably know from posts on here, most endocrinologist known very little about thyroid conditions be it hypo/hyper and all the other in between, wouldn't surprise me one bit if the endocrinologist you are seeing is a diabetes specialist 🤷♀️🤦♀️🤦♀️🤦♀️Happy new year, I hope this year is a better one for all of us who are suffering ❤️
🤦♀️... I'd like to tell you I still have my thyroid... But alas I don't, it was so toxic I had to get it removed 😢 I was so toxic by then I had to have oral iodine to kill the thyroid before my Thyroidectomy, as the surgeon said my T4, T3 were to high to operate, he could in effect kill me if he tried😲 scarry.I'm on thyroid medication but are struggling due to lactose intolorent and colitis, the fillers effects my colitis causing diarrhoea and inflammation of both small and large intestines 😩
Trying to see another endocrinologist as my last one refused to treat me.... As I say they know very little😡
Bless you ! I’m so sorry to are having a such a hard time with your thyroid! 😞I hope you will find a good one soon.
Are you seeking treatment privately or with the NHS?
I will learn from you ! I will find out about about my treatment plan next week when I see him . To be fair as he was quite aloof I don’t think he is the right doc to treat me ! But I will definitely be more assertive with my treatment like you are in pursuit of the right treatment. ☺️
I did seek a private parathyroid surgeon in 2022 as no endocrinologist in my area (Cumbria) wouldn't admit I had primary hyperparathyroidism, my son paid ❤️.I now have the diagnosis of phpt, and showed the endocrinologist at my appointment the letter,... she herself said back in 2020 I definitely don't have a parathyroid problem 🤣 when she saw the letter stating the diagnosis that's when she got nasty, and told me to get another endocrinologist 🤣.
Unfortunately I can't go private this time😩, but because this horrid endocrinologist told me to find another endocrinologist I feel I have the right to choose 👍
No problem lady.. Because you know nothing I'll find a better one than you😡
You certainly having a terrible time with the doctors 😞 Hope you get the right treatment soon so you won’t be in so much pain any longer.
I’m in Warwickshire and hopefully they are a bit better but I truly doubt it😞 You did open my eyes and I am more aware of how important the thyroid is in controlling our body.
though guessing you're not feeling much of a Diva at the moment -
I'm sorry for all you have gone through;
In order to know if you are dealing with Graves Disease the thyroid antibody unique to Graves is generally written as either a TR ab - a thyroid receptor blocking or a TSI - a thyroid stimulating immunoglobulin would have been run at the hospital -
and this must be available to this endocrinologist whether working within the NHS or privately and I think at this point in time the treatment the same NHS/Private but likely faster privately and obviously more expensive.
There is an alternative Anti Thyroid drug - Propylthiouracil - PTU for short - please ask to be switched to this older, but equally as effective treatment option - please check out the PIL -
Patient Information Leaflet for Carbimazole - from memory - rashes are listed as a known side effect of Carbimazole as are, amongst other things, a sore throat and mouth ulcers.
Graves is an auto immune disease and there is no cure - and all the AT drug does is semi block any new daily thyroid hormone production so your over range T3 and T4 readings will slowly start to come back down into the ranges and hopefully your symptoms relieved.
If your hormone levels can't be controlled by just the AT drug semi blocking further hormone production the second option is to try Block and Replace whereby your thyroid hormone new production is totally Blocked by the AT drug BUT a measured dose of T4 - is prescribed to Replace a daily measure of thyroid hormones so your T3 and T4 do not fall too far through the ranges and you then experienced the equally disabling symptoms of hypothyroidism.
If your heart is involved - Propranolol - a beta blocker is often prescribed as this also reduces T4 to T3 conversion.
Please ensure all eye drops are Preservative Free - even those prescribed :
Quite why your immune system has been triggered to turn and attack your body is the 64 million $ question -
Graves tends to be a stress and anxiety driven AI health issue and it can occur after a sudden shock to the system like a car accident, the unexpected death of a loved one - I was physically threatened and attacked by a man I employed as my assistant manager - or occur totally ' out of the blue ' .
Please contact the Thyroid Eye Disease charitable trust - tedct.org.uk as already detailed above as they can signpost you to a specialist centre where the endocrinologist and an ophthalmologist with a interest in Graves will work together to optimise your health care.
When metabolism runs too fast - as in hyperthyroidism or too slow as in hypothyroidism your core strength vitamins and minerals - those of ferritin, folate, B12 and vitamin D can nose dive through the ranges compounding your health issues unnecessarily further - so please ask for these to be also be run :
Once with the results and ranges we can offer considered opinion on optimal levels to help support you through this phase of ill health - as just being a NHS range somewhere - when some ranges are too wide to be sensible - not acceptable -
For all things Graves Disease - if this is found to be what you are dealing with -
Loved my super healthy body until the beginning of December when I had a nasty sinus infection which created this thyroid storm ! It happened so sudden and I’m so crippled I’m actually rather scared that I won’t be getting to the bottom of it!
My NHS appointments both got cancelled in December and I am now pursuing this privately as I don’t afford more delayed and being treated via a phone call. I only have £1000 though my insurance per year to use for tests and I want to get those tests right (not sure if is per illness or all illnesses as only used my insurance once for an op of a meniscus tear). I am grateful to have that available to be honest and I am keen to get back on my feet.
I am making notes and I will arm myself with all the knowledge to make sure I am getting the right treatment .
Thank you so much for sharing your experience and for all your advice . I will check the link to find an eye specialist ! xx
You are likely with information over load now - read through everything again another day and try and turn off and rest - I know - easier said than done.
If you get lost within the forum - home is your Profile page so just press the icon - top right on my laptop and bottom right on my phone - and this takes you back to everything you have ever written on this patient to patient forum.
You can also read anybody else's Profile and all that they have ever posted and replied to by pressing their Profile icon which sits alongside any reply they have made in any post.
Ok - diva now at rest - until another day - just keep us in the loop as things progress - and any new information deserves a new post/question as we try and answer as fully as possible all questions within the first 24 hours of posting.
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