For the last 3 or 4 months ive been feeling really ill stomach hot flushes hot and cold sweats headaches etc then ive had blood test after bloodtest and finally got diagnosed with overactive thyroid my doctor said she will write to a specialist to see wat treatment is best for me ie meds ,radioactive or surgery but because im 41 this year it may be surgery ive got another bloodtest on friday to check for antibodies i just feel so ill cant eat all im doing is going toilet all the time for weeing and opening my bowels all the time and eating makes me want to go more its really getting me down waiting to find out wants going to happen so any help would be nice many thanks for listening
Hi debbie56921, when I was diagnosed with hyperthyroidism I was put on anti-thyroid drugs immediately. My GP called an endocrinologist to confirm the dose (based on my thyroid values). To feel better you need to get your thyroxine levels down.
Are you taking any medication right now? Do you happen to have your blood test results?
Other than that I would recommend resting as much as possible. While being hyperthyroid your metabolism runs at a high rate causing frequent bowel movements etc. Nevertheless, it is important to eat well. Eat enough protein to avoid muscle wasting and consider taking supplements like L-Carnitine. L-Carnitine has been shown to limit the damaging effects of high thyroxine levels. More info e.g. in this post on the same forum:
https://patient.info/forums/discuss/l-carnitine-and-grave-s-62121
Hi, while,your thyroid is overstimulated,miss releasing loads of adrenaline affects into your system. I found swimming and exercise extremely debilitating , and my heart under. Carbimazole was my first stage of help with regular blood tests with the Endocrinolist , make sure you see one and get all,options explained, my GP had no idea what to do x
my levels are still high so I've been offered RAI or a Thyroidectomy , I've chosen surgery as if the RAI doesn't work you sometimes need a 2nd dose,and/ or surgery anyway!!
right now, slow down, rest, avoid stress and places like Arcades and Alton towers. Anything that overstimulates will make you feel so ill. Eat often , small nutritious meals, I also took Vit B12 supplements .
i really hope you start to feel better soon, but there's no magic pill or wand I'm afraid X it's a difficult ride, and you just have to do the recommended things, Ho,d tight and ride it out .
all the best xx
I hope you have your appointment soon. When I was being diagnosed, it took time for the specialist to complete all my tests but she immediately put me on a beta blocker called Propranolol because I had a resting heart rate of 100 to 130. So that's something your doc can do if you ask. I was diagnosed in 2007 at the age of 60 so your age should have nothing to do with the treatment chosen for you. Because I work in the medical field, I knew something about the treatments. I knew I definitely would not agree to Radiation therapy or surgery because I knew there were other options. So the more you take responsibility to learn about your disease, the more empowered you will become. Once I was confirmed with a diagnosis of Graves disease, I was given the thyroid hormone blocking drug called Methimazole at a dose of 10 mg a day. That controlled the excessive thyroid hormones but did nothing to lower the antibodies that were attacking my gland. So the main tests for following your disease are TSH (thyroid stimulating hormone), Free T3 the active thyroid hormone and Free T4 the hormone that gets converted to the active hormone in your body. Always get and keep a copy of any and all tests or letters that are done on you and keep your own file. So while my disease addressed the overproduction of thyroid hormone for two years, I found it did not address the TSH which remained essentially at 0 for those two years until I did more research and found out about supplements that would support my recovery. My Endocrinologist and most doctors do not know about these so you will have to take responsibility to learn about it. The first supplement i took was regular L-Carnitine at a dose of 3,000 to 4,000 mg per day. There was an Italian research study that positively identified that hyperthyroid patients benefit a lot from taking this. I actually wanted to know my Carnitine levels so I got tested and I was deficient in this amino acid as are most hyperthyroid patients because we lose a lot of vitamins, minerals and amino acids when we are running hyperthyroid. I found I was deficient in Vitamin D which I learned was extremely important to healthy thyroid functioning and I was low in Magnesium. If you start taking these supplements even before you get treated with meds (which usually is the first line of treatment), it will improve your symptoms. I took Vitamin D3 gel caps. I had tried vit D pills before and they weren't as good. I got the Carnitine by prescription because I had to take that high a dose and it was prescribed as a liquid which made it easier to take. I have done well with this. All my levels, including TSH are normal now and have been since I added supplements in 2009 along with an extremely low dose of Methimazole (2.5 mg 3 to 4 times a week).
Hi Debbie... i'm sorry you've been suffering recently ..and it is a bit of a shame that your Doctor has said she'd find out if meds, RAI or surgery would be the right thing for you at the moment. If you are HYPERthyroid you have a very good chance of getting THAT under control. with no need whatever for RAI or Surgery.
If your blood tests prove that you have Graves' disease , which is when your immune system produces antibodies that attack your Thyroid , you also have a fair chance of getting it completely under control.
Your Thyroid gland I think should really be called your metabolism , and it is absolutely vital in the human body it maintains , or should, a healthy balance for many body parts. To be Without a thyroid ... and then be left untreated by medication would likely be Fatal.
Family members of mine are in just that situation, through years of neglect and poor healthcare by doctors who know very little or nothing about the Thyroid Gland.
Your proper blood tests, i.e. to find out if you have antibodies, will tell your doctor and the endocrinologist just how you should be treated to regain your health.
If you have Graves' disease you most likely will be given Carbimazole .. i was given 20mg a day .... then after 3 or 3 months down to 10 per day.. then down to 5mg per day.... this can all work very quickly although it may not seem so at the time , but with patience and plenty of lying down to rest , you will soon start to feel better mentally and physically ..
with the help of supplements along that route , replacing vital nutrients , vitamins and minerals which your body will , undoubtedly have lost over the time that you've been unwell... you can start to restore your health once again and feel like your old self.
Many of us on this site have done this , very successfully ... and you could also try it .
Empower yourself Debbie... start to read online, as much a you possibly can about the symptoms of Graves' disease and HYPERthyroidism so that you can begin to make your immune system less aggressive , and so that you can learn then, how to calm your thyroid down, so that it will give you peace again.
Your thyroid has most likely looked after you well for 41 years... and you most certainly need it , think again before you consider destroying it by RAI or by Surgery
those two options are NOT reversible!
the very best of luck with your bloods..come back on here and print out your results including figures in brackets with are the ranges for your lab. and people on her will
read them for you , giving you great advice on what you Could do next to get yourself well again without radical intervention.
luv mx🌹
Hi
​This is what happened to me too. I am gluten intolerant and there is a connection between gluten intolerance and thyroid disorders which are auto immune diseases.
My Graves is still causing awful thyrotoxicosis , I've tried the supplements but it seems my thyroid is too far gone to be reasoned with. I'm envious you got yours under control with time meds and supplements, but not everyone is as lucky or well enough?
ive battled for 15 months using lots of advice, but I'm so tired , and I'll I think it's time to accept surgery and save energy for getting better ?
i admire you , wish I had been able to sort mine x
Hi Jan
I agree with you. I amunable to take carbimazole and L Carnitine etc due to cardiac arrhythymias . My private endo identified this and recommended RAI. Sadly the NHS have done nothing about this. I feel at the end of my tether with all this plus muscle pains and stiffness.
​I am going to demand the RAI and chance going hypo, it is easier to manage than hyper .I am taking Vit D3 supplements.
Take care
Hi again Jan
​Do you mind my asking what your thyroid function tests showed.
Do you have any thyroid nodules?
Thanks in advance. x
Jan ... how has your Graves' disease been treated .. ?
have you taken Carbimazole ?
how do you take your B12
mx🌹
Hi Madge
In your posting you mention about searching for ways to make the immune system less aggressive. Is it possible to expand on that please?
Thanks
I take 30 mg a day of carbimazole , was 40 but my joints seine do painfully. The meds affect your bone marrow as well as Lover function, which is why the LFT s in regular blood tests. I also had heart meds for the palpitations but I couldn't to,erase them. I take vitaminD , B12 and B complex one a day, from the health shop. Because B vitamins, as well as D / bones are affected.
My endocrinologist has been brilliant, respecting my intense wish to avoid surgery, but now he fears the negative affects of medical treatment on my system, and says this will kill me .
So im backed against a wall here.
I want to get well, I choose surgery and a new battle with getting correct thyroxine dosage after.
the hyper symptoms are killing me, hypo may make me feel like death, but another day to fight suits me ok.
some days I rally, the next I hurt, I'm dizzy, I feel bloated and puffy, I'm uber anxious and I don't enjoy anything.
this isn't living either, it's struggling .
i know people who've had the surgery and regretted it, more have said it's an uphill climb but now they feel better.
I can't consider RAI , I don't like the risks, surgery is awful but the more tolerable of the two for me , by choice.
it feels good to make a decision for my treatment, I've been in limbo for so long.
i can't go on like this anymore.
im scared, but resolute xx
sorry, didn't proof read, meant joints seized painfully, and Liver function can be affected
please make sure you work with your endo, they should be on your side.
seems like you've been through it too Luvvie ... please believe me i have been there .. and i remember only too well how dreadful Graves makes you feel.... and you have come to a conclusion. I feel very sad that it has made you feel so dreadful.
I responded very well indeed to Carbimazole , to my great surprise , as i have been very intolerant to most other drugs i've ever had to take.
Once you have made up your mind about surgery and you have tried all else ..then i guess you know which road to take.
some of the things i've taken to become Euthyroid (normal ) have replaced the vital minerals, vitamins and nutrients that i used up whilst being in a state of HYPERthyroid with Graves.
B12 'must be melted under the tongue for example (sublingual) as it goes to to blood and not your Stomach
Magnesium deficiency caused unbelievable problems in the body and should be replaced if deficient ...
things like Zinc and Copper should be replaced if low
D3 also needs replacing
..... it should be taken with K2 to make calcium work properrly
if you decide to wait a while before surgery i could let you know the ones i took to get better after Carbimazole treatment.
but if you don't ... then i wish you the very best of Luck Luvvie ..
Always stay alert to any knowledge that may come your way...by
reading , Googling or just sharing experiences on here ... most of us have
had a hellish time ... but many of us are well agai... and you will be to , i'm sure , whatever way you go .
Luv Mx🌹
Hi Madge, thanks so much for responding X ok, I'm only just being referred for surgery and so it might be a while , huh?! I'd love to hear more from you re. Supplements and advice.....
i feel upsy Downsy , and jittery at night. I've had enough.
any advice PLEASE , especially as you're coming out the other side of the illness?
wight gain advice too....and energy !?
thanks xxx
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Jane around 80% of your immune system is in your gut !
when i was told i had Graves' disease .. dr. told me don't worry .. we just give your RAI and you become HYPOthyroid then you take Thyroxine for the rest of your life !!! 🙀🙀
well... long story short ... i've seen this happen throughout my family , some of whom are in a very bad state right now in their lives .. because of neglect and bad care from doctors , who know little or nothing about how the Thyroid gland works.
I decided there and then .. that i would never , unless i had cancer , destroy what i perceived to be a very healthy Thyroid that had seen me through my life so well... instead i saw it that my immune system had gone a bit wonky and was moreor less attacking my Thyroid .. so i aimed to tackle the aggressor and not the victim , as it were.... my Immune System.
I didn't know how to do that... but i read everything i could find by Googling till i fell asleep each night.. looking for deficiencies that i might have because i was " running on empty " so to speak.
it started with Vitamin B12 ( SUBLINGUAL )
if you google... Vitamin B12 deficiency...
and Google Vitamin B12 and Graves' disease
you will be astonished at what it tells you ... you will probably see yourself in that description ... I did !!
Google Magnesium deficiency
Google D3 and Graves' disease
B1 Thiamin
B Complex
Zinc
Copper
Selenium
Vitamin C high dose
C0q
ACIDOPHILUS i take 40 Billion per day...
you will really feel the benefits of taking this ... it puts your tummy troubles back in order and allows the good bacteria which has likely run very low or no longer exists in some cases , to flourish again ... this aparently has a beneficial effect, as you can imagine , on your Gut and therefore your immune system... It should not be left out of supplements.
No one gave me the list of these things... but i did follow Linda's advice on a few of them , as she has a great career background , which has given her much knowledge on the subject....including regular L Carnitine ... i kind of weaned myself off Carbimazole with it... and i'm know it helped me.
I also took Motherwort , Bugleweed and Lemon Balm in liquid form
and mixed the three together in equal measure.. i had it in a bottle with a dropper and whenever i felt anxious or very HYPER i'd take around 2ml i.e. .. a teaspoonful or maybe even 2 or 3 depending on how high i felt.
it worked extremely well for me ..
SEe what you think of all of this ... By he way i didn't not stop eating any particular foods ... i have never eaten meat in my life .. i don't drink Coffee
only tea .. in large quantities , i may add.
Please do not see this supplementing as a chore .. i swear to you .. i felt myself become better by the day...and i knew all the things i supplemented with were doing me good.. it really was self medicating ..and maybe not correct to do so .. but it WAS for me .. as my doctor hadn't even offered me aspirin to help my dreadful symptoms.
Good Luck Luvvie..
luv Mx🌹
Jan .ll Please see my reply to Jane...below... i should have sent to you too.. as i thot it might be of interest.. weight gain was strange for me ... i did NOT lose weight with my Graves' disease and i was told that was normal too..
i think i put a few pounds on with carbimazole.. but i was also told that it makes you feel better and because of that increases your appetite
... and therefore ...guess what ? you eat more ... and it's for THAT reason
that the weight goes On ... so it's our own fault really.
after Carbimazole and having started my supplementing i just stopped eating sugar... not entirely ....but definately No Rubbish ! so i've lost what i put on and would be happy to lose another few pounds .. but ill do that by stopping the sugar .
ps. i feel so much better now than i have for a long time ..l never recognised that i was becomming ill until i was very ill indeed.
and i really associate with how you feel...i was sooo bad i wanted to die ..... now i can hardly believe i felt that way.
... and i hope you'll feel like that too ... one day very soon.
luv m x 🌹
i would like to thank everyone that commented you all have helped a great deal its nice to kno im not the only one out there
im going back doctors today ive not eatin in 5 days everytime i eat im on toilet opening my bowels and its making me feel so ill all im doing is drinking all day everyday anyone kno if this is ok
It is important to stay well hydrated so it's good you are doing that. Keep us posted.