Hi everyone I’m based in New Zealand so things might be a bit different over here. Also sorry will this be quite a long post. I was first informed of mild hyperthyroidism roughly 10 years ago however was told it was not bad enough to require any sort of treatment. Another blood test was taken shortly after which showed my levels were in normal range and I was not monitored further or informed of any symptoms to look out for. Looking back now that I am aware of the symptoms, I’ve had most of them over the last 10 years but they were put down to anxiety. I was not checked for hyperthyroidism again until October 2020 when I saw my gp because my period had not returned after coming off birth control 10 months prior. That is when I found out again I was hyperthyroid and also that I was pregnant. I had an ultrasound during the pregnancy which suggested a benign autonomous toxic nodule. I was given 5mg carbimazole at 15weeks gestation which did not change my levels at all, I was therefore advised to stop carbimazole. I was referred to endo postpartum and was again started on 5mg carbimazole. They were not happy to follow through with hemithyroidectomy without confirmation of the autonomous nodule with a nuclear scan, which I was told could not be done until I had stopped breastfeeding completely. I was receiving treatment though my gp at this time altering the dose of carbimazole, however have found that at a low dose my levels continue increasing and at a high dose I cannot tolerate the side effects long enough to see if there is any improvement in test results (Sharp upper left side abdominal pain, no appetite, severe nausea). I recently had the nuclear scan confirming the nodule is causing the hyperthyroidism and was referred back to endo for surgery which was denied, the reason being that my levels are too dangerous to perform surgery or be given anaesthetic and that they will not see me until i am euthyroid although it’s been 3.5 years of my gp trying to get my levels down with carbimazole and my levels continue to increase. I’m beyond frustrated at this point, I’ve been miserable with every symptom for the past 10 years and I’m getting nowhere. On top of the hyperthyroidism symptoms I have the side effects of carbimazole adding to it along with the side effects from the propranolol (lightheaded, headache, fatigue) to keep my heart rate down (140-180bpm without it) and I don’t know what to do anymore. I have secondary infertility because of hyperthyroidism and there’s a permanent solution to it that they won’t do, and won’t even see me to discuss. The other thing is, I had anaesthetic while hyperthyroid during labour, then again to have wisdom teeth pulled so why was it fine for those but not to solve the hyperthyroidism??? My most recent tests show TSH <0.01, T4 37.1, T3 22.2. Where do I go from here? I’m so sick of feeling this way.
Hot nodule causing hyperthyroidism : Hi everyone... - Thyroid UK
Hot nodule causing hyperthyroidism
Welcome to forum.
If you struggle with carbimazole there is another antithyroid called PTU - Propylthiouracil. It’s that an option?
Surgeons will not operate on a hyperthyroid - thyroid - because there is an increased risk of a dangerously high surge of hormone. (Thyroid storm) Hormones need to be under control & usually lugols iodine is given to lower blood flow to thyroid just prior to operating.
Is it a single nodule one 1 side or multiple nodules.
Have thyroid antibodies also been tested? TRab & TSI.
Are you currently on carbimazole/ propranolol? What dose?
thank you for your reply, I have tried PTU briefly and it seemed to give the same side effects but I’ll ask to try switching to that and stick with it longer to see if it makes a difference. I do understand there are serious risks it’s just very frustrating how long it’s taking to get them under control to have the surgery. It is 1 right sided nodule approximately 3.5cm when measured 4yrs ago so im not sure if the size has changed. Yes they have and were negative. I am on both, carbimazole 20mg twice daily and propranolol 40mg 4 times daily.
This suggestion is based on my experiences of being hypothyroid and not tolerating Levo at all.
I had very low iron and ferritin (iron stores)when I was first prescribed Levo. I absorb iron very poorly so improving my levels of iron/ferritin took me a long time. But when I did finally manage to optimise my levels of iron and ferritin I could finally tolerate Levo for the first time.
I can imagine that tolerance of all sorts of supplements, drugs, and hormones could be affected by low levels of nutrients. Perhaps you could get your levels of vitamin B12, folate, ferritin (and do an iron panel as well, if possible), and vitamin D tested then optimise them, then try and raise your dose of carbimazole or PTU. Other nutrients that are often low in thyroid disease are zinc or copper (one or the other but not both - you need to test to see if one of them is low), magnesium, selenium.
I have seen that sufferers of hypothyroidism have low levels of nutrients because they absorb them poorly, and sufferers of hyperthyroidism have the same problems because they "use up" nutrients more quickly than healthy people.
I have found that optimising my nutrients has massively improved my quality of life and I would recommend it to anyone with any illness. Optimum isn't always at the middle of the range or the top of the range it can vary depending on the nutrient. But be aware that, based on the beliefs of doctors in the UK and assuming that doctors elsewhere are no different, if they test any nutrient in a patient and the result is in range they tell that patient their result is "fine" or "normal". But being in range isn't the same as "optimal".
It really is worth a try - but don't take supplements unless you have tested and found that you need them. Taking them at random doesn't improve anything. And avoid multivitamins and multiminerals because most of them contain poor quality ingredients and cause problems if they contain some nutrients that can block absorption of others, or doses are too high of some things and too low of others. So ask for advice on the forum if you find out levels of anything are low.
Humanbean I couldn't agree with you more. Your Spot On. I had the same experiences as yourself. I had TT and had many issues with my T4. Only after my nutrients especially the Iron ,vitamin D, b12 , I finally felt that my T4 started to work more Optimally for me. I know that it sounds a bit interesting. But nutrients do makes a Tremendous difference .
Thank you! I’ll definitely ask to have those checked, I know my iron is fine but I’m not sure about the others so hopefully getting them to optimum level will improve things
How are you feeling at the moment? I can imagine you feel dreadful. I went through 2 years of untreated Graves’ disease and the state I was in after that was not a pretty sight with thin hair and nails lifting of my nail beds. I also had sweating and a rapid heart beat and was very thin. My doctor told me it was the menopause and gave me the coil and some patches which made me worse. I looked so bad my family thought I had undiagnosed cancer. I eventually found out what was wrong when I joined a hair loss site where a member looked at my blood test and pointed out I had a suppressed TSH of 0.002. You can read my story on my profile page.
Actually I know of someone who has a single nodule like you. She has managed to get hers under control and takes carbimazole which has lowered her levels. She doesn’t have Graves’ and her endocrinologist is based in Leicester. He is trying to persuade her to have RAI at the moment. I have advised her to not have it if she is doing ok because there can be some long term affects afterwards.
You sound a complicated case and if I was you I would search the web and join some other sites not just this one. I did the same when I first became ill and Elaine Moore’s site which is for Graves’ disease sufferers helped me a lot. There are some women on there with some large nodules like you. I haven’t been on there for a while but you could read the forums which might be helpful.
Hopefully some more members will be able to advise you when they wake up as it is early in the morning in the Uk. I am up because I am slightly hyper at the moment which I can cope with. I will eventually burn out when I have used up this excess thyroid hormone which is how I have been for the last 15 years. My family are concerned because I am suffering with Graves’ rage and a bit hard to live with. I am trying to keep calm but I think Christmas isn’t helping with all the added stress. Anyway enough of my ramblings and hopefully pennyannie will see this thread and give some input.
Here is the link to Elaine’s site
Thank you for your reply, I definitely don’t feel well, but it’s become my new normal. My hair has thinned out and nails are brittle, I have dermatitis covering my hands which I can’t get rid of, I had palpitations constantly, tachycardia, and high blood pressure until I started propranolol recently (it works well for these symptoms however makes me feel faint, unable to concentrate, gives me headaches, chest pain, and makes me feel like I’m going to fall asleep during the day). I’m anxious and restless at all times I feel like my brain just won’t shut off causing insomnia and fatigue, I went from 70kg to 50kg in the space of 8 months despite being insanely hungry and eating more than ever, I have a tremor, hot flashes, secondary infertility all caused by this one nodule. I’m only 24 and I just feel like someone my age shouldn’t be dealing with all of this and for such a long time too. I would like to stay away from RAI as I want more children once I have this sorted out, but I can’t have children on carbimazole either which is why I thought surgery would be my best bet. I’ll definitely check out some other sites too and have a read. It must me so hard for you putting up with it for 15 years. Hopefully after Christmas stress is over it settles down a bit
I am sorry to hear you are going through this at such a young age. I was in my 40s so much older and had already had my 2 children when my journey started.
It sounds like surgery would be the best option for you and I hope this will be possible in the near future. pennyannie makes a good point about what happens if someone has to have emergency surgery with high thyroid levels. You should ask your doctor that question and see what they say.
Hello Krystallrose and welcome to the forum :
I'm not quite sure what else I can advise - as my usual stand point is to suggest one stays on the AT drug longer term and not opt for definitive treatment and thyroid surgery / RAI ablation until all avenues have been fully explored.
As it reads you seem unable to tolerate either drug - Carbimazole or Propylthiouracil ( PTU ) and living with debilitating symptoms - surgery is the logical next step - as you must feel worn down by it all - mentally, psychologically and physically.
I am sure there must be emergency cases where the patient needs to be quickly assessed and prepared for surgery without the delay of waiting for their thyroid hormones to fall back down the range - though possible I'm thinking of the solution being a full thyroidectomy :
I shall share the most recent research with you - though I do not think at this point in time it has much relevance :-
pubmed.ncbi.nlm.nih.gov/338...
ncbi.nlm.nih.gov/pubmed/306...
I am post RAI thyroid ablation for Graves back in 2005 ( when I knew nothing ) and became much more ill some years later and now self medicate and am much improved taking Natural Desiccated Thyroid.
I too learnt much from Elaine Moore's first book and now also her website and she too has an open link where you can ask questions of other forum members - and at one time - she would reply direct to emails addressed to herself - just not sure that facility is still available - and the website is Stateside - so there will be another time lapse your end - elaine-moore.com
Thank you so much, I’ll definitely join and have a look on Elaine Moore’s website. I have thought the exact same thing about surgery, how there could be an emergancy at any time where they can’t wait on medication to get my levels down and I did bring it up with my gp a few months ago. She said that because it’s an elective surgery where I do have the time to prepare and get my levels down, they won’t do it until they are which is super frustrating. Next time I see my gp I might ask to try ptu again and stay on it for longer because I think I was only on it for 8 weeks before she switched me back to carbimazole.
Have you looked at the Graves disease website? Val Collins seems very knowledgeable about hyperthyroidism.
I have just joined and I am just reading at the moment. It is a Facebook group and there seems to be mainly people from the USA. Thanks for sharing this with us
No I haven’t but will definitely check it out thank you
I have only just joined but it is definitely worth a look
As you can see I am awake again at night and I can’t switch my brain off. I have also had a few temper tantrums today my poor husband is at the end of his tether with me. One of my eyes keeps twitching which is driving me mad!
Hi Krystallrose
I have read through your post and the responses , If you are still not having any success you may try looking into a change to your diet. I do not think the gp will ever give you the correct advice, and as you say just give out pills when its high and pills when its low, They obviously have an effect but for long term good or bad who knows, where as going full carnivore with little or no carbs or veggies does have a profound change on mood and energy levels. imo
A keto diet has also helped many with auto immune diss ease, but meat from ruminant / grazers seems to be the key, as they have a different way of breaking down food than us and ferment the food which removes many toxins that would otherwise be in the meat, but store bought food seems to all contain toxins of one sort or another. being corn fed.
I have been hyperthyroid for 2yrs now and have been on only meat for 1.5 of them with only positive results I am able to carry on where I left off when diagnosed, and I felt at deaths door then. Before being diagnosed I was 20yrs vegetarian.
I still take Carbimazole 5mg once a day and selenium 100mcg. I have propranolol but do not like it at all so only take it when I am aware my heart rate is going bananas. which is about 1-2 a week. sometimes 1-2 months.
My TSH fluctuates between <0.01 and 1.4 since being carnivore, and it was <0.01 for the first 6mths
both my T3 and T4 are improved, but if I stop the carbimazole it gets worse again so no complete fix. I have found it is allowing me to get on with things normally in the longer term than just relying on the meds alone, and to be honest if I could be more strict with it I suspect it would improve faster, but it is quite a task to completely change the way you look at most everyday things, and you get better and more strict as you go on.
I had no idea about carnivore or keto 2yrs ago but then found TheBigFatChallenge which is not specifically for hyperthyroid (and cost me nothing), but the journey it takes you on is unique today for the alternative approaches being taken by people doing proper research into these seemingly diet and environment "issues". And is great introduction to the whole field. basically a 90 day challenge to lose weight, but is great for all sorts as you will see.
I can somewhat appreciate how you must feel with the length of time you have had it. But I always feel a breakthrough is just around the corner. Its just not as easy as popping a pill.
hi. I am in New Zealand. I used Propylthyuracil to get my Graves’ disease under control. It is the alternative to carbimazole as like you I have severe side effects. Also using the Propylthyuracil aka PTU I got my levels down super quick. My t3 at its worst was 66 range 2.50-6.0. That is my advice to you. Ask to change drugs. PTU is here and it is funded. I got a total thyroidectomy in 2022 and am living a good life albeit 8kgs heavier than my normal.
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