I'm new here and new to the term hyperthyroidism. I'm very overwhelmed as the information ive read so far doesn't give me any positive perspectives.
I will appreciate any knowledge, personal experience stories or support to get my thinking on the right track.
I haven't been feeling well since mid December 2020, visibly unwell since 1st of Jan. Due to covid chaos it took me awhile to get my bloods tested. I'd appreciate any comments on the results. As getting information from GPs is like drawing blood from a turnip.
TSH <0.01. range 0.30-4.20
FT4 41.4( 2 weeks later 47.9). Range 10.5-22.8
FreeT3. 16.8. Range. 3.1 - 6.8
Anti-TRO ab. <15 kU/L. Range 0-34
As the result GP prescribed Neomercazole 40mg a day for a month.
Wouldn't it be a high dose to start with?
Waiting for a scan and was promised to get referred to endocrinologist ( 3 months' wait at the moment).
From reading the forum I understand levels of vitamins and microelements are important. Here's what I've found:
My magnesium 0.68. Range 0.7- 1
First GP said to take a supplement, then a week later said the opposite aka not to supplement as it's not low enough.hmm
Vitamine D 49 nmol/L
I can't understand it's good range. Looks like increased risk of inadequacy
GP prescribed Altavits D3 25000 IU once a week for 6 weeks. Isn't it a huge dose? Is it better to take smaller doses every day?
She also prescribed me B12 injections for 4 weeks. My B12 was 396. Range 200-1100.
Ferritin 40.0 ng/ml. Range 6.9- 282.5
After 2 weeks of taking that dose of Vit D3 my calcium went up and is a bit over the norm. Would it be advisable to take vit K in this case?
I'd appreciate any comments from people treating their hyper thyroid. Is there any hope to get it back to normal? From what I've read am I destined to take carbimazole for over half a year at least, may be longer, may be years? If unsuccessful, then they prescribe RAI...which kill thyroid,later operation and loss of this important organ.
Has any of you come across endocrinologists who do not concentrate on autoimmune causes but take into consideration the impact of the nerve centers of the periferal nervous system on the thyroid gland and treat them ?
I thank everyone for your support in advance!
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tromashka
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We use carbimazole in UK which I think is the same as Neonercazole or may just have the same active ingredient.
60mg is highest dose, but many start lower. Once you are retested the dose is lowered often by half. This keeps you in range as staying on starting dose will drive you into hypo level.
It’s good you are having a scan, is this a nuclear thyroid scan or ultrasound scan?
Was you doctor concerned about calcium going up? Was phosphorus tested too? If phosphorus low you must have parathyroid hormone tested too.
Magnesium can affect this too. But magnesium is a common deficiency. Testing can be a bit inaccurate as to what is in the tissues compared to what showing in the blood.
Vit k2 & magnesium are important p, Vit D cofactors, to eat with fattiest meal.
The aim is for your Graves (which you need to have confirmed) is to be treated until you find remission. Medics try and limit it to 18 months as being hypothyroid is considered easier to treat, often it is but not in every case. In theory you can continue on anti thyroid for longer.
If you did require definitive treatment, You would probably need either RAI or surgery. Not both. There are instances where RAI is insufficient and it can be repeated.
Very few endocrinologist focus on the autoimmune aspect. Little is know about them or how to manage them. They are useful for diagnosis and to monitor in terms of if you are near remission and ready to stop medication.
Some specialist do not test them at all and treat all low TSH as potential Graves and follow the protocol of this diagnosis. Shocking as Hashimotos can initially present in the same way.
TSI or TRab are considered more specific to Graves and should be tested if Graves suspected.
Thank you very much for your response. I cannot find phosphorus in my test.
Yes, it is carbimazole i was prescribed. Wow 18 months is such a long time. My poor thyroid.
Unfortunately I don't know what kind of scan the G P will refer me to. I'll be lucky to get any at all these days. Could you tell me which one is better? Thanks!!!
I would think your GP has referred you for a ultrasound which will look at the health and size of the thyroid and can indicate if you have autoimmune damage or any nodules.
my specialist arranged a nuclear thyroid scan. They can be performed in a number of ways. In my case I had an injection of a small amount of radioactive iodine and the imager scans the uptake activity in the thyroid. I had negative autoimmune antibodies so this procedure was done to confirm a hyper functioning nodule.
Hello PurpleNails, I thank you again for that information. 2weeks later I got my ultrasound scan. I was told there were multiple nodules on both sides( all small) and one 1cm on one side which they might investigate further. My eyes are swollen and the left eye is swollen even more ( the same side as that nodule) , wonder if that's connected.I completely forgot to ask if my thyroid is enlarged... And they mentioned something about calcification of the nodule. Need to read about it.
If nodules are over 1cm they tend to do a fine needle biopsy.
Nodules are very common, even in those without disfunction. If the nodules are hyper functioning or toxic this can cause hyperthyroidism, without autoimmune issues. but they often appear along side Graves.
The report findings may comment on the size of the thyroid if abnormal.
I had 3 samples taken from a large solitary (5cm) nodule. The procedure was straightforward & nothing to worry about. At the time my thyroid function tested were reported as “normal” but it turns out the blood test wasn’t ever processed. It wasn’t repeated until 7 months later. Then I was put on carbimazole.
The side of the nodule & being more puffy in eye that side is just coincidental. The inflammation is from the immune system attack. It doesn’t target one side over the other.
My symptoms are pretty much the same though T4FREE has gone down from 46 to 26 (range 10-22).Puffy swollen eyes, struggling to keep them open after 10 pm, keep waking up after 4am. Pulse has calmed down a bit from 100 to 85-90. Moods a bit better ( great after support and useful information from this forum; much worse after doctor appointments)... not loosing weight any more that good. Getting there. Thanks for asking! X
Hi tromashkaI was diagnosed in 2018 with hyperthyroidism like you my gp put me on carbimizole, anti thyroid medication I'm glad to hear your getting the scan on you thyroid I had the uptake scan that members have mentioned on here, but I tried in vain to take the anti thyroid drugs but keep vomiting them back I hope your getting on OK with your meds, it turns out I should have had the uptake scan sooner as it showed my thyroid was very toxic then I was diagnosed with graves, all to late for me I lost my thyroid in 2019, be vigilant with your condition you are definitely hyperthyroid, like you my calcium went up but it had been doing this all the time I was hyper only my gp never picked up on it, I was diagnosed last year with hyperparathyroidism after a raised PTH level and a high calcium level, I to was put on vitamin D and again on my last blood draw my calcium has gone up again 🤷♀️... Keep a close eye on your symptoms are you having any hyper symptoms at all, I was really bad with tremors, sweating, fast heartbeat, insomnia, fast bowles, jittery, unfortunately some gp and even ends don't have much idea about thyroid conditions sad as that sounds, my experience of this condition is question everything get regular bloods done, keep an eye on symptoms, you will no doubt have more information when you get your scan,
Good luck,
As other members will tell you post your blood work on here I always do as their are some very good members who can inturprit them for you, ❤️❤️❤️
Thank you very much for your reply. Im sorry to hear you lost your thyroid.
My symptoms appeared only 2 months ago : frequent bowel movement, loss of wait without any reason and then puffy eyes. No tremor, no flushes, though i would feel warmer than other family members. In January I noticed my heart was racing most of the time, irritability. Also I developed tinnitus ( ringing in my ears), no idea if thats related to my hyper thyroid, but why else it'd appear?...
I didn't see my GP in person as they consult only on the phone ( due to covid fear)... So he prescribed me carbimazole ( 40mg) only using my symptoms description and blood tests mentioned above.
I'm trying to educate myself as much and as as fast as possible to learn what options I have in order not to lose my Thyroid. It looks like there's no treatment as such for TG disfunctions. The doctors either try to suppress it hoping for the best or substitute it's function synthetically which doesn't cure it either. Very sad.
Hi tromashkaI forgot to mention the weight loss, I lost over 2 and a half stone but didn't mind the loss it was the other symptoms that made my life hell.. Also it sort of crept up on me like you I just started feeling a bit hotter than other people, that was my first symptom I took myself to my gp who said I was going through the change, OK never challenged him as this is one symptom of the menupause, but as time went on the heat and sweating became worse then I noticed my heart beating fast especially if I got up to do something, then my sleep pattern changed dramatically I could be awake for 24 hours then as a person who only went on the loo maby 3 days to evacuated my bowles I would go soon after eating, and yes my eyes became puffy and watery, I also had tinnitus still do... As for suppressing the thyroid with anti thiyroid meds this can work for some, but as I've found this all depends how bad your thyroid is, mine was so toxic no amount of anti thyroid meds would have made any difference my thyroid needed to come out for my health,I went in to thyroid storm (crisis) it took over 2 years for my surgery to diagnose me.. And I blame myself for not questioning my gp also I never looked at my blood work, I do now because after getting my medical records I noticed several suppressed TSH, but no T3 or T4 done, I have suppressed and out of range TSH since 2016..with no gp questioning it.. Wish I'd seen them, I might have been able find out why, first mistake, that's why you must question everything and get bloods done regularly and go over them with a fine tooth comb... GPS and endos will try to say you don't need full thyroid blood pannles done.... Don't listen to them you do... Slowdragon is best ever with this info also vitamin and minerals only my gp won't do them, which is so wrong when you clearly have a thyroid condition which can leach vitamin and minerals from your body..
Again good luck and keep this site posted on your condition
Oh, wow, what a useful comment! Thank you! By the time I get seen by the endocrinologist I'll have a stack of encyclopedias with me and armed with knowledge thanking all your advice. My only worry the doctors offer no treatment to it claiming it's for life. I refuse to believe it.
Did your doctor actually say you have Graves? Because he hasn't tested for the Graves antibodies. He tested for Hashi's antibodies. And, even though it was negative, anti-thyroid drugs are not the right treatment for Hashi's. You might find you go hypo very quickly. When are you due for your next blood test?
He said nothing, just prescribed 40mg dose of carbimazole and "i'll be on it" was the end of our phone conversation. Now that I'm reading this forum and other sources, I get a better understanding and more questions. As why did he test only for one type of antibodies? Why this dose? I'll try to get him on the phone next week. Thank you!
Yes, I definitely think you ought to push for more information. There is a very real problem in that a lot of doctors do not understand the difference between Hashi's and Graves, and automatically think that a low TSH means Graves. But, it doesn't always. More investigation is necessary.
I pushed for more information from my GPs when it was time to retest and they just keep saying like parrots they've never heard of TSab nor of TRab...or labs dont do them and that I should stop googling stuff up . ( Deep breaths!)... I'm seeing a private Endocrinologist on Tue and I m afraid it'll be a waste of time and money as I dont have any fresh tests results to show her... GP only tested T4free which went down by half... Hoping against hope the endo will be interested in investigating the problem to get the diagnose right.
That doesn't surprise me that your GP hasn't heard of TSI or TRAB, but he should be referring you to an endo if he thinks you're hyper. Hyperthyroidism is not something for GPs to treat. It's too serious for that, and they just don't have the knowledge. But, your private endo should do the antibody tests if you're paying him!
Could I bother you asked ng what should I expect from the private consultation? How is it different from a public one apart from the fact that you see them faster? Most of them do both private and public practice.
I think I've just written to you on another post ?
So, anyway, you do need a blood test to confirm Graves Disease.
There are 2 thyroid auto immune diseases that initially present as an overactive thyroid :-
Graves and Hashimoto's BUT not both of them are treated with anti thyroid drugs so it is essential to identify which AI disease you may have.
The antibodies unique to Graves are generally written as a TSI number reading - with words like thyroid stimulating and or you may find a TR ab number reading - with words like thyroid blocking receptors :
This is the medical evidence and proof of diagnosis and should be run before medication is prescribed.
Hi pennyannie❤️That was some good info, I myself was diagnosed with hyperthyroidism my gp automatically put me on anti thyroid meds without finding out if I had graves, I unfortunately had a very bad reaction to the anti thiyroid drugs, first lot was carbimazol then ptu.. Both I could not stomach, upshot I saw a endo who clearly knew I was not getting on with the anti thiyroid meds, I asked why I had not been given an uptake scan to determine if I had graves.. His response was well awful he said "why do you think you need a scan" I said to determine if its graves, after a bit of an argument which stressed me no end, he reluctantly agreed to a uptake scan, I was then in hospital in thyroid crisis, I indeed did have the scan which showed a very toxic thyroid both lobes a TSH.. Undetectable, a T3 of 39.5 a T4 of 100...my thyroid was so toxic hence the anti thyroid meds not doing anything but making me even more unwell, it beats me how these endos sleep at night, the lovely doctor in the hospital who looked after me through my thyroid crisis was so angry with the endo he rang him up to tell him, he as a hospital doctor was discusted with his conduct as an endocrinologyst.. The next time I saw that endo he was soooo nice to me 😊 it was him who got my operation in motion he got me on an emergency list maby because he knew he had made a big mistake,
I pushed for more information from my GPs when it was time to retest and they just keep saying like parrots they've never heard of TSab nor of TRab...or labs dont do them and that I should stop googling stuff up . ( Deep breaths!)... I'm seeing a private Endocrinologist on Tue and I m afraid it'll be a waste of time and money as I dont have any fresh tests results to show her... GP only tested T4free which went down by half... Hoping against hope the endo will be interested in investigating the problem to get the diagnose right.
If you do have Graves Disease you do not need to loose your thyroid :
Many people stay on the anti thyroid medication for many years and keep their options open and their thyroid gland function :
Normally speaking if your TSH is not in range the laboratory run a further test from the same blood and check T4 and if T4 is out of range they then test T3 and they check the antibodies to see if you have a thyroid auto immune disease.
This can all be done from the same first blood sample and provides the medical evidence and on which your medication is based.
I see you now mention a nodule and that could have also caused these symptoms and presume further test will be carried out.
Take all your paperwork and blood test reports to the endocrinologist on Tuesday and explain how you feel - if doesn't need to be a waste of time, as you need understanding and clarity of these results and this endo should be more able to explain things to you once all the paperwork is on the table.
Thank you! My GP said laboratory tested only TSH ( which is still suppressed) and T4FREE. No test on T3FREE. That's why I'll have to work off my initial bloods when i see the endo that were taken for the first time 6weeks ago.
I wonder if the endo orders new tests to be taken, that surely means new consultation after that and new payment... Ah, sure, will have to go with what it is ahead.
Hello, I was diagnosed with graves disease in 2018.For maybe a year before I was having symptoms which I put down to the menopause and as I didn't want to take HRT I just soldiered on.My symptoms were extreme muscle aches and weakness, anxiety, insomnia, a sort of shaking all inside my body, shaky hands, feeling hot and sweating excessively, feeling very hungry but lost about half a stone,going to the toilet at least after every meal,sort of having a racing mind and getting myself worked up over things and also having puffy eyes which I'd never had before.I was put on poprananol to treat my symptoms while I waited 3 months for my endocrinologist appointment.This helped with the racing heart and shaking.The endocrinologist started me on carbimazole only at first and I spent about 8 months trying to get the right dose to control my thyroid.It was either too high or too low.Eventually we decided to try block and replace which is high carbimazole to block the thyroid then slowly introducing levothyroxine to bring the thyroid up to the right level.Obvoiously this takes time as a blood test has to be done around every 5 to 6 weeks to see if dose needs increasing or decreasing.I did this for just over a year and stopped all medication at the end of september 2020 to see if I was in remission.Within 2 weeks all my old symptoms were back so I had a blood test and I'm now on my 2nd time of block and replace building up to correct dose for me.Due to covid I haven't seen my consultant in person but things have been done over the phone.I have his secretaries phone number which has been invaluable.I have been referred to an opthamologist and have mild thyroid eye disease.He has said block and replace is best for this because once you're on the right dose it avoids fluctuations in levels which can make eyes worse.Also I know I cannot have radioactive iodine if it ever comes to that as it is not good if you have thyroid eye disease and can make it much worse.Nothing has been mentioned to me up to now about how long I can stay on medication or how many times I can try.Covid might actually be helping to give me more time as many operations are not going ahead anyway.I have found so much excellent advice and information on this site and feel I understand my disease so much better.I want to try and keep my thyroid if at all possible but realise that itmay not be.At least I will have the chance to make an informed choice.Sorry to be a bit long winded, hope this helps.I am in England and have had all my treatment on the NHS.Good luck to you.
Thank you for your detailed response. It is valuable. It's sad that endocrinologists go only for block and replace. There must be a different way to avoid killing the organ. I'll keep on reading. Best of luck to all of us!
'Block and replace ' IS a way to avoid killing the organ . it just stops it over producing hormone for the time you are taking the carbimazole/other antithyroid drug , AND at the same time replaces thyroid hormone with controlled amount of T4 (levo)
RAI/surgery kill the organ.
antithyroid drugs , with or without additional Levo , are a way to keep it controlled, without damaging it.
Yes, I agree with you on that.I'm hoping medication can get me through until I hopefully go in remission.I would like to keep my thyroid if at all possible, and medication may allow me to do that.
Thank you for the information! I probably don't understand it completely yet, but critically thinking overworking thyroid might be a result of some other problems with our health not the actual bad guy if it makes any sense. So how can blocking thyroid functions be called treating it . Isn't it like prescribing glasses to be able to see instead of training eye muscles. That's why " block n replace" sounds like a slower version of killing it IMHO. Just an opinion.
If you are found to have Graves your immune system is attacking your thyroid, and it is the victim not the cause. The only treatment is the use of “Anti Thyroid “ which actually works by stopping iodine being converted to a usable form for the thyroid to make new T4 & T3. It doesn’t damage the thyroid. Stop the medication, the high levels return. The preexisting thyroid hormones have to be used up and the right balance found.
Also, don’t allow dose adjustments by TSH alone. dosage should be by FT4 & FT3 as TSH takes time to respond and in some remains low regardless of how low thyroid levels go.
I agree with your philosophy , re. fix the ACTUAL problem. but no one knows what causes the body to produce TRab Graves antibodies , or how to stop it doing so . We are waiting on science.
If you are found to have TRab (Thyroid stimulating hormone-Receptor antibodies) then these ARE the cause, (meaning a diagnosis of Graves).
They cause the problem by attaching to the receptors on the thyroid that respond to TSH (thyroid stimulating hormone) and they produce the same effect as TSH would, ie . ask the thyroid to make more hormone.
TSH is produced by the pituitary gland to control the amount of thyroid hormone produced. It does this in response to the hypothalamus which responds to a feedback loop sensing the amounts of thyroid hormone in the blood.
but TRab (or at least the Stimulating kind , there are also Blocking ones ) mess this control system up by masquerading as TSH when they are not.
There are other reasons for overproducton of thyroid hormone , not every one has Graves . There can be nodules in that secrete too much . "hot nodules" and there might be other causes, that i don't know much about.
Ive found books by a couple of specialists who support the therory that existed before all antibodies science came around. The theory is on the role of our periferal nervous system that overstimulates our thyroid ( because of prolonged stresses, illnesses etc), hence all the elevated levels of hormones and anti-bodies (that try to regulate the gland). They suggest treating nerve centres apposing to constant supressing of the gland functions. I find it interesting. If I find this method of any effect I'll let you know. If not, tablets than for life or so.
@ Cavapoochonowner May I ask you? When you got your first appointment to the endocrinologist, did he/she do any tests, ultra sound scan? Question 2: who referred you to the ophthalmologist? Your GP or your endo? Did you develop your eye condition later or it was there from the very beginning but not looked after. Did your eyes bother you? How are they now?
Sorry for the shower of questions. I appreciate your time!
Good morning to you.My GP had done blood tests in the July which showed hyperthyroidism.He'd tested FT4, TSH and FT 4 was in the 50's when it should have been between 10 and 20 I think and my TSH was low.He prescribed proprananol to help with symptoms while I waited for my endocrinologist appointment in September.I had to attend an endocrinologist appointment with my son at another hospital and during the appointment we somehow came to discuss how I was waiting for my first appointment at another hospital and he looked at my details on the computer and said I would need another test to test my antibodies when I saw my endocrinologist and that he would do it so I would have the results ready for my first appointment.I had the blood test done there and then which I thought was amazing and very kind.I think I did look atrocious through, sweating, skin and bone with puffy eyes.He said I would have to have it tested and it would speed up the process.Since I've seen my endocrinologist I've only had regular blood tests testing FT 4 and TSH. I have never had a scan or anything, I don't know if I should have.They did feel my neck on my first appointment.I mentioned my eyes to my endocrinologist and they referred me to the opthamologist about my eyes.They were puffy, bloodshot, dry and gritty, aching when looking up, down or side to side also a bit of double vision when looking at certain angles or when they are tired.They also were a bit protruding, especially my right one.They had started to look and feel different around the time I first went to the GP.I have been seen by opthamology and they did a few tests and took pictures and said I had a mild case.They prescribed ibuprofen and eyedrops.I still have a regular check.My eyes have improved a bit but some days they are worse than others.I find them especially bad if my thyroid levels are too low or high.The opthamologist said block and replace is better because once optimum levels are achieved it avoids the fluctuations which can exacerbate thyroid eye.I also have been told not to have RAI if ever it comes to that as this can also exacerbate it.Hope this helps.Sorry if it's long winded but I've found it invaluable reading other peoples experiences and I've learned so much from this site.Best wishes to you.
Thank your for your detailed response. The longer the better!!!!. So the ophthalmologist didnt really do anything other than a pain killer and eye drops support? Hmmm
Hello again, think there are other treatments such as steroids for severely bulging eyes and also surgery but mine is only considered a mild case and thankfully most of the time the drops do the trick.I have had alot of problems with my eyes in the past(2 cataract operations and a detatched retina)before I was diagnosed with Graves so I'm thankful I only have a mild case. The surgery for bulging eyes I would not look forward to.I think my graves was caused by my son's diagnosis with hodgkins lymphoma and the stress of thatThankfully he is 5 years clear but the stress of that has left it's mark on the whole family and I think mine is Graves.
I saw you asking about beta blocker on another post. Thought I add on here
With propranolol you can form a physiological dependance with it (it relaxes you).
Usually it’s intended to be temporary until the carbimazole takes effect. Propranolol also has a anti thyroid element so useful for hyper (not for hypos)
Most are fine to wean down especially if done slowly.
I’m an exception, my specialist stoped mine abruptly and triggered horrible migraines. Before I would have around 2 migraines per year but these were almost constant. GP put me back on them as they are often prescribed as a migraine preventer. I have taken a fractionally lower dose over many months. Last week I tried to reduce my dose timing a little more and I think I’m going to have to go back a step again! I feel terrible right now sleep all afternoon yesterday & a can feel a vein near my eyebrow pulsating right now!
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and armed with knowledge thanking all your advice. My only worry the doctors offer no treatment to it claiming it's for life. I refuse to believe it. 
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