Hi ALL, i am just diagnosed hyperthyroidism 4 days ago after a series of blood tests and follow up for about 6 months. I am now on carbimazole 2 tablets of 5mg daily.
i was and am still very sad and cried my heart out when the Endo told that to me. I was just crying and really felt the whole world had fallen on me.
Pls share your experiences in this journey of hyperthyroidism. Really need everyone's feedback/support as am really feeling lousy eversince.
Thank you.
Hello, sorry to hear of your recent diagnosis. I too was diagnosed with Hyperthyroidism this week. I can understand how you feel; it is upsetting and stressful. Did the endo say what is causing it? I am yet to go to my first endo appointment (GP diagnosed me after blood tests showed extremely low levels of TSH and high of T4 and t3). How was your endo appointment? Don't worry, everything will be fine. My Gp told me he sees this a lot, and thyroid disorders are very common. That having said, I know its still difficult. Look forward to hearing from you!
Hi Maryam... was so glad to hear from you and givng support. My blood tests showed extremely low levels of TSH and high of T4 and T3) too.. Every morning is so dreadful during taking carbimazole knowing all the side effects . The Endo mentioned that the most probable cause would be the post menopause after another blood test of the antibody which test for genetically linked.The endo has set an appointment in another 2 months' time.
After getting more info on carbimazole and the way the medicine does to the body immune system, it makes me have lots of worries..such as infection may set in and affect other bodily functions plus the liver function.
Anyway i really appreaciate your positive remarks... but the truth of it still cannot be swallowed at this point of time...i really ask God why Me???? why this??and so many whys....
i envy the way you handle the whole scenario though you are in the same state as I am.Really needs such support. Looking forward to get more positive and encouraging words from you!
Hi lily,
i'm also grateful for the support here :). I understand, and my mornings in particular are not very nice either. I feel anxious as i can have an episode anywhere anytime. I am still waiting to see an endo - hoping this will be soon, if not I will go and see someone privately for the initial consultation as I don't want to be waiting too long.
I am yet to start the carbimizole; I wanted to research natural ways of curing this however this entails a lot of research.
I'm glad I can at least try to support you. I know how you feel. We are allowed to ask those questions.. why you? why me? Unfortunately, we'll never know! I just try and remember that things can be far worse, this condition is treatable and although not at all pleasant there are ways of managing it. I am due to get married in a few months, everything is booked - i just want to enjoy my time and prepare for my wedding but instead i'm having to deal with these random episodes that can come on anywhere and anytime - its not nice at all.
I guess everybody goes through different types of challenges in life, and this is now unfortunately one of ours. We will deal with it just like we have dealt with past experiences. Be strong!
What does the first endo appointment entail ? Do they examine you/carry out further tests ect?
M
HI Maryam,I envy your attitude and your support. I wish you all the best for your wedding which is in the next few months.Your words Be Strong is a real booster for me.
I am blessed to have got your reply in this forum.
The first Endo appointment was mainly on the test results and the medication to be prescribed to help/to treat the hyper... and also the Endo informed of the side effects of Carbimazole of which i have to take serious note ie to go back to the Endo if i were to develop high fever with bad sore throat.Are you on any medication now?
I would advise you to see the Endo soon. Me too initially did not go to the Endo but my GP really advised me to make appointment with the Endo.
i will have to go back to the Endo in 2 months time.
Your support is much appreciated. Love to hear from you.
What do you mean by an “episode” Maryam ? If you’re feeling breathless and have palpitations, these symptoms are very common, and your GP can usually prescribe beta blockers to help until your antithyroid treatment begins to take effect.
If it’s the anxiety , your hyperactive thyroid will no doubt be exacerbating your natural anxiety and excitement in the run up to your wedding. Short of surgery, the quickest (and perhaps only) way to get your thyroid under control will be antithyroid treatment such as Carbimazole.
If you’re in the U.K., and have a long wait for an endo appointment, your GP may be able to start you on a low dose of Carbimazole which should take the edge off things. Alternatively, with your wedding coming up, a private appointment should get things moving more quickly.
Do you have test results you can publish ? People may be able to offer more advice if they see your results.
Usually at the first endo appointment, they will start you on treatment, and spend some time explaining how this will work. They may order additional tests - in the U.K., FT3 and antibody tests can often only be ordered by a specialist.
They will tell you when your next appointment will be. Mine have generally been every six to eight weeks, with blood tests at the same interval, or sometimes more frequently.
If they suspect Graves’ disease, they will ask you about any changes to your vision, or discomfort in your eyes, as there is an associated disease called Thyroid Eye Disease. Not everyone gets this (smokers are more at risk), and it usually resolves itself or responds well to treatment. (If you happen to have an optician’s appointment coming up, you should tell them you are being treated for a hyperactive thyroid, and they will then look for any changes ).
Hello Valarian,
Thanks for your advice.
Episode : I count as each time I have the a group of multiple symptoms at a time. My legs start trembling, face flushing, sweats ect. I have an anxiety issue anyway so this doesn't help things although i'm trying my best. I don't get out of breath so Beta blockers have not been prescribed. I have been prescribed Carbimazole (20mg) however in all truthfulness I have been too scared to take it.
I have published my lab results on here: they showed I have hyperthyroidism however the correct antibody for Graves was not done (as you said and as the gp informed me this is ordered by a specialist). My nhs appt has been given to me in 3 months time - as I have the wedding coming up, I don't want to wait that long so I have gone private, seeing someone tomorrow, will let you know ow it goes if you are interested :).
Graves: I haven't had any changes to my vision ect so hard to tell. That being said, my two siblings have got auto immune disorders so I never know.
Thanks for you advice, and looking forward to receiving more!
I hope you are doing well.
M
Hey there.. i would like to advise you to take the carbi as prescribed. It's not gonna be good if you do not take it. In all truthfullness, myself too was too scared to take the carbi initially prescribed by gp but upon advise by the Endo i have started. It's not all the fancy and nice after taking it nevertheless as Valarian mentioned untreated hyperthyroidism is dangerous, not least because it leads to an increased metabolism, and this can put a strain on the heart. However, it can be treated relatively easily.
Please consider to take it. You have given me lots of support and i hope you do start the carbi ASAP.
Hope to hear from you soon.Take care!!
Hi Maryam28
If you add your results to your profile, people will be able to see them easily every time you post without your needing to post them again
Your thyroid levels are pretty high, so no wonder you are feeling awful. Hot flushes are a common symptom. I had tremor in my hands rather than my legs (It reached the stage where I was embarrassed to let anyone see me writing anything) and again these aren’t uncommon. Both were resolved relatively quickly once I had been on Carbimazole for a few weeks. TPO is an antibody, very high levels are associated with an hypothyroid condition called Hashimoto’s Disease, and although 65% or so of people with Graves’ also have elevated levels of this antibody, a zero result is no surprise (and at least Hashi’s has been ruled out).
You’re going to need to balance the scary “might happens” of Carbimazole side effects with the scary “will probably happens” of living with an untreated overactive thyroid. It’s unlikely that any treatment affecting such a key part of the body as the thyroid could be completely free from side-effects. Only you can make this decision, but your endo should help you be better-informed. Every now and then, someone posts here about using natural options, but I’ve never seen any evidence these can reliably deal with the excess thyroid levels typical of Graves’.
You could choose to have your thyroid removed surgically (not something you will want done just before your wedding) or ablated with radioactive iodine.You would then (almost certainly) need to take thyroid replacement hormones for the rest of your life, although admittedly these don’t carry’ as many health warnings as Carbimazole. Few of us here would see these treatments as a first option , but some people find this is the only way to get things under control.
You need to discuss this with your endo, and I’m certainly not going to tell you what treatment you should opt for. One thing to bear in mind, however, especially given your forthcoming wedding, is that Carbimazole can’t deal with stored thyroid levels, it only inhibits production of new hormone. It will therefore take a few weeks to kick in and begin having noticeable effect.
It may be difficult to imagine at the moment, but your hyperactive thyroid can be sorted. Twelve months ago, I felt more unwell than I had ever been in my life, and thought my life might never be the same again. Now, although my thyroid still isn’t properly under control, I feel so much better, and my life is more or less back to normal.
Carbimazole can depress white blood count to a dangerous level, and it’s right that we get the lecture on going for tests in the event that we feel unwell with a sore throat. However, this rarely happens my specialist told me that in a career spanning. 30 years or so, he’s seen maybe half a dozen cases. It’s something to be aware of, but not something to dwell on.
With regard to cause, most people who are hyperthyroid have an autoimmune disease called Graves’ Disease, which has a hereditary element,combined with other triggers. Antibody tests will confirm Graves’.
If it is Graves’, you can expect to be on Carbimazole for 12-18 months, with blood tests every six to eight weeks.
Do you have a copy of your labs? If so, post them on here - results and ranges. Which antibodies did the endo do? It's really, really important to know. 
Hi greygoose... I do have the results done on 21/5/2018
TSH 0.012 mIU/L ( 0.400 - 4.700)
FT4 28.3 pmol/L (9.0 - 25.0 )
FT3 10.9 pmol/L (3.5 - 6.5)
Prior to that, an earlier results done on 2/3/2018 was :
TSH 0.12 miU/L
FT4 25.9 pmol/L
FT3 3.32nmol/L (1.22 - 3.07)
Anyway i did not have the antibody test results.
At the moment I am on 2 tablets of 5mg Carbimazole in the morning prescribed by the Endo. and after taking this i will be feeling nauseatic with lots of burps and bloatedness in the stomach which is very annoying and uneasy. I really dread every morning to take that...and the worst of thoughts if this is going to be lifelong.Oh my God!!!!i Its so terrible...
I have to take the medicines for 2 months and another appointment with the Endo in 2 months time.
Any advise please.
You really need those anti-bodies tested - either to confirm HYPER or HASHIMOTOS. greygoose will be along soon !
thanks Marz... will call up the Endo later and get the findings. good reminder.
Yes, as Marz says, you absolutely need those antibodies tested. So, insist on it with your endo.
To know if you have Grave's, you need TRAB or TSI antibodies.
To know if this is just a 'hyper' phase of Hashi's, you need TPO antibodies and Tg antibodies.
And don't let him tell you any different! The whole problem is that doctors don't seem to understand the differences, not even endos.
Hi greygoose, is TRAB =TSH Receptor Antibodies?
What's the difference between Grave's and hyper? any difference in the treatment episodes?Thank you
Yes, that's right.
Grave's is hyper. But, the problem is that you can also have 'hyper'-like episodes with Hashi's. But, the treatment would be completely different. And with Hashi's, you would at some point become hypo. Which is why the treatment is completely different, and you need to know.
Initially the treatment is usually the same, if only because most of us are prescribed Carbimazole at our first endo appointment, and it isn’t until then that antibody tests are ordered. I suppose if they wanted to be sure people with relatively narrowly elevated thyroid levels didn’t dip below range, they could prescribe levo alongside the carbi (ie ‘block and replace’) - but that would mean prescribing a relatively high dose of Carbimazole for someone with only moderately raised thyroid levels.
Yes, but it shouldn't be. Giving anti-thyroid drugs is not going to get rid of the hormone already in the blood. And it's not the thyroid that is over-producing. The thyroid itself is already not producing enough, in most cases.
And, the thing I've noticed on here is that once they've put you on carbi, etc. they are very reluctant to take you off it! So, best not to get on it in the first place.
if not to get on Carbi in the first place is there any other options of medication to handle hyper? Thanks
The alternative antithyroid medication, PTU, works in a similar way to carbimazole.
how about the side effects of PTU?
Similar to Carbimazole, although some people who can’t tolerate one fare better with the other. PTU carries slightly more risk to the liver, which is why Carbimazole is the preferred first choice, other than for women in the first trimester of pregnancy, where PTU takes precedence as it is less able to cross the placenta barrier.
Oh right, so the damaged thyroid cells dump stored thyroid rather than going into a final hyper production frenzy? As you say, carbi won’t help with this.
Ideally, you’d need the endo to order tests including antibodies a week before the first appointment. Presumably if someone has Hashi’s, TPO will be elevated by this point, and TRAb normal? (TPO by itself is no good, as 65% of Graves’ patients have elevated TPO, although generally at a lower level than people with Hashi’s)
so in other words the endo should have done the antibodies tests during the first visit whereby thyroid blood test is done?
my endo did not do the antibodies test only the thyroid blood tests.. Oh my this endo really dont seem to know their field well or something else??? what is he trying to do?? get sick of it..
Yes, but it often doesn’t happen, although I think hyper patients are more likely to have them done than hypo. You could get the tests done privately -I’m pretty sure Medichecks offer a thyroid antibodies package - but I would push the endo first, to see if you can get them done on the NHS (assuming you are in the UK). The point is, you want to know what is causing your thyroid to be overactive, and so should your endo
Did you manage to contact Endo ?
Hi Marz.. i will only see the Endo in July.thanks
Further up this thread you said you would call up the Endo about antibody test results - so was wondering if you had. As greygoose mentioned it is important to know which antibodies. There have been a couple of cases here recently were members had been given the wrong treatment - July is a long way away ....
Hi lilytkn1- Hope you are doing ok. I hope the Carbimazole starts making you feel better soon - please keep us up to date with your progress, if you can. In terms of your bloods and treatment, i can't really give you any advice as this is all new to me too - sorry! Its not necessarily going to be life long for you, I have read that some people can getter better from this after treatment takes effect.
Hi Maryam, thanks again for those encouraging words. I am already on carbimazole for 9 days now. will only go for another ( the last blood test done 28/5/2018) blood test on 28 July 2018. I do very much hope this treatment works for me. I am also losing weight now.
You are a darling giving all the encouragement even though this is all new to you too. hope to hear from you soon!!!
How much weight have you lost, and how quickly ? Do you have any other symptoms ?
I lost about 4 kg ( 9lbs) in a month..I also have an uneasiness ( a feeling of the eyelids wanting to close ) in the right eye.. but not too sure whether related to thyroid as I have cataract but its not due for surgery. I do have burps,nausea and bloatedness in the morning after taking the carbi.
I guess you might lose that much in a month if you were trying to lose weight, or simply not eating enough. People with very overactive thyroids tend to lose weight rapidly in spite of good, even increased, appetite. Be warned, this effect doesn’t last !
What were the effects that made you seek medical help ? Other common symptoms include palpitations/rapid heart rate, feeling overheated (less easy to spot in summer, but opening windows and walking around in short sleeves when everyone else is wearing jumpers would be a clue) , bursts of energy followed by extreme fatigue, or a feeling of anxiety/jitteriness.
You may experience some or all of these symptoms.
I can’t comment on eye symptoms, as I haven’t (as yet) suffered from Thyroid Eye Disease (TED), but if you’re being monitored for cataract anyway, you should just let your specialist know you may be at risk from TED. TED is only associated with Graves’, you won’t be at risk if your hyperthyroidism is down to something else.
btf-thyroid.org/information...
btf-thyroid.org/information...
Hi Valarian, it was through a blood screening which i do yearly shows TSH was low and monitoring was done every three months by the GP and when the TSH level was below 0.1 GP recommended to see the Endo.Prior to that i do have palpitations/rapid heart rate for no reason, feeling overheated, getting angry impromptu,fatigue even when not actively engaged in any excercise activities, could not sleep well at night, and also lost of weight in spite of increased appetite. Thanks
Hi Lilytkn, I’m about a year into treatment for hyperthyroidism (in my case, caused by Graves’ Disease).
One thing to understand is that anxiety is itself a symptom of hyperthyroidism , so your natural level of concern will have been magnified. Mood swings and irritability are also common, so one minute you may be bursting into tears, and another flying off the handle for no apparent reason.
Untreated hyperthyroidism is dangerous, not least because it leads to an increased metabolism, and this can put a strain on the heart. However, it can be treated relatively easily.
Hi Valarian I am developing sore throat now but without fever.. was wondering if this is serious and need Endo attention? pls advise.
thanks.
Sorry, I missed this, hope your sore throat is better now.
My endo told me that if I had agranulocytosis I would feel pretty unwell, and have a sore throat like no other, probably accompanied by mouth blisters.
If you’re not sure, head for your local surgery - or if you feel unwell and it’s out of hours,even A&E. I’ve never heard of anyone being accused of being a time-waster in these circumstances .
Hi Valarian, thanks for the concern..anyway my throat has recovered. prior to that I was so panicky and email to my Endo (she was on vacation) but did reply and requested me to go to the nearest clinic to withdraw blood and check for white blood cells which mean if less than 3, carbi needs to stop immediately.But the blood test shows white blood cells 13 and GP informed it is an infection.was put on antibiotics for the sore throat and thus recovered thereafter.
at times i feel the uncertainties are never ending and the anxieties never stop.everyday is a "new" scary "event" which could be of no seriousness or otherwise. hate to think of it. only to cross my fingers and pray that all will be well very soon.
hi everyone.. I was having this dry eye syndrome for about a couple of years and recently the conditions was bad. Went to opthamologist (i have alert him of being hyper and now treating the condition with carbi) for a check and he told that the dry eye condition is bad and prescribed a gel solution to overcome the condition. He did not respond whether it is due to hyper. on another note the opthamologist discovered that I have a drooping eyelid (Aponeurotic Ptosis).
well, just wondering if anyone have gone through these conditions (especially the dry eye ) and whether its related to hyper ...thank you all
Hi Lilytkn1
I don’t suffer from Thyroid Eye Disease, but one of the symptoms is often described as “grittiness”.
Apparently it’s quite difficult to diagnose in the early stages, which may account for the reticence, and to start with, other than relieving symptoms, I believe it’s basically a watching brief. At least they will have a record of the exam, and probably some recent photos available, if at a later stage they want to check for any changes .
The important thing is to mention this at your next endo visit. My eyes have been fine so far, but I just happened to have had a routine eye test soon after I was diagnosed , and my endo asked for details of the optician., so if they think it would be useful to see the results of the eye exam, they can pull them.
For me, the side effects got better after a few weeks.
Your dose is a moderate one, and your thyroid levels only just over range, so hopefully they won’t take long to come down. Carbimazole suppresses production of thyroid hormone, but it can’t destroy any existing stores of hormone, so it always takes a couple of weeks for these to work through before people begin to feel the benefits.
Because your levels are not too far above range, it would be quite easy for you to become over-medicated, and have hypothyroid blood levels. Your doctor appears to be managing this by taking you off the tablets after a month, so this shouldn’t be an issue. Being over-medicated on Carbimazole isn’t usually an issue, it’s easily resolved by reducing the dosage, but it can be a bit of a shock after being hyper for a few months !
This may not be Graves’, (I would say that most Graves’ patients who’ve posted results here have had higher thyroid levels, sometimes more than double the reference range ), so I would keep pushing your endo as to what he thinks the cause might be.
HI Valarian, thank you for the support. As this is relatively new to me and for that moment when the Endo informed me I was feeling like hell and all the anxiety sets in..i did not know what to do.. and it was a blessing to have found this forum to share.
i will do so to keep pushing my Endo at the next appointment 28/7/2018. Since you are in about a year into treatment any experince to share like side effects.. and others. Would love to hear from you soon!!
I did have some stomach pain and bloating initially, but it seems to have gone now. I also had a rash which my GP and endo thought might be down to the Carbimazole, but it was more or less controlled by over the counter antihistamines, which I was taking at the time for hay fever anyway , and seems to have vanished now. At no time have the side-effects outweighed the symptoms of my Graves’. Unfortunately, my Graves’ took off again at the beginning of the year, and I’m dose was increased again (currently on 30mg/day) so it’s ‘fingers crossed’ time for me. One thing you could consider if the side effects are really bothering you is discussing splitting your dose into two, and taking half in the morning and half in the evening.
Hi Valarian.. just want to know whether the carbi affect the white blood cells and also the liver?
Yes it can, although the effect on the liver is apparently less of an issue than with PTU. It’s deemed safe for people with pre-existing mild to moderate liver problems (see attached patient info although obviously the endo would need to be aware of this. However, untreated hyperthyroidism is likely to lead to heart problems. Both these drugs have been around a long time.
btf-thyroid.org/information...
medicines.org.uk/emc/files/... leaflet)
Hi Valarian, i read the leaflet attached and would like to know whether all the symptoms and side effects take place when we first start with carbi or after several weeks. at the moment.. i am only having bloating,nausea feeling and uneasy in the stomach.. Thanks
Some people don’t get any side-effects. I believe the bloating and nausea are typically associated with becoming accustomed to the medication, and therefore start early and disappear after a few months. I had the rash after a few weeks, but I was on a much higher dose than you (40mg/day), and they were never sure it was caused by the carbi. The more serious (and more rare) side effects, including white cell count problems, can occur at any point.
Some people choose to stay on a low dose (maybe 2.5-5mg) of Carbimazole for years rather than undergo more radical treatment, and most people with Graves’ take it for at least 12-18 months without any major side effects.
To be honest, many people with Graves’ are feeling so ill by the time they start treatment that the most common side-effects of Carbimazole scarcely register, and seem in any case a small price to pay for getting the Graves’ under control. You’re fairly unusual in that your hyperactive thyroid was picked up by a routine blood check
I had the Carbimazole rash as well, after 3 weeks on it. Severe enough that I had to visit ER for recovery/pumping steroids, stopped the Carbimazole and switched to the bloody PTU, which went well, with no issues. But reading the leaflet of this medicine makes you wonder why it's you having to take this plunge.
Yet there is life after Graves. I can promise and prove it.
Hi Caesard.. your last sentence is a booster to me. how to have life when the medications giving all the bloody uneasiness to bear??
It's about determination to fight it strength to never give up, knowledge about the disease and courses of actions, voracity ans restlessness in geting what you need and at the level that you need, listening to your body like you never did before and ...faith.
That was on short my story. I'm always happy to support you on every stage, if you need it.
I can vividly remember how broken I was when I've found this site. You're here early, will discount you a lot of suffering and wondering in the dark.
yes Caesard your support on every stage is much appreciated and needed .Hope we will be communicating often and you giving encouragement always along this road of hyper!!! Thanks for the big support. Really needs it..this site is real comfort with all the community giving support and advise..
Whenever you feel you need my support, just ask. I mean it! If needed will leave you my e-mail address in a PM.
I won't hide that it's a long bumpy road ahead of you, with ups and downs that resemble to a crazy rollercoaster ride but it can be overcome. And this site enables you to do it.
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