Ive been recently diagnosed with Graves’ disease would anyone be able to advise me please, I’ve been told to stop taking Carbimazole 20mg immediately, my hair is falling out and my personality drastically changed and I put on 1 and a half stone, i was told to restart a week after being off it at 5mg but then was decided to wait until my next bloods which are on the 17th July...it’s sent me from over to under I’ve been off it a week and feel amazing but obviously I need to start treatment in some shape or form, my endocrine consultation is on the 21st July with blood on the 17th, ideally I’d like to try and use natural treatment, I’ve started taking b12 and biotin and multi vitamins.. and the thought of going back on Carbimazole puts me off completely, any help or advice would be amazing thank you
Graves’ disease medication help????: Ive been... - Thyroid UK
Graves’ disease medication help????
Have you had antibodies tested to confirm Graves? Autoimmune thyroid disease also called hashimotos often starts with hyper symptoms even though it is hypothyroidism. This is because the thyroid has been attacked and damaged and in response it sends out extra hormones causing hyper symptoms. This hyper phase doesn't last and the person then becomes hypo.
Carbimazole would be the wrong treatment for this.
The only way to tell is to have antibody tests to confirm Graves or autoimmune e thyroid disease.
Yes I’ve had antibody tests
Please add ALL thyroid and vitamin test results and ranges
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested for Hashimoto’s and Graves’ disease.
Essential to test TSI or Trab antibodies to confirm Graves
Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, with Graves and Hashimoto’s
Ask GP to test vitamin levels
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Is this how you do your tests?
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
List of private testing options
thyroiduk.org/getting-a-dia...
Medichecks Thyroid plus ultra vitamin
medichecks.com/products/thy...
Medichecks often have special offers, if order on Thursdays
Thriva Thyroid plus vitamins
Blue Horizon Thyroid Premium Gold includes vitamins
bluehorizonbloodtests.co.uk...
Graves Disease antibodies test
medichecks.com/products/tsh...
If TPO or TG thyroid antibodies are high this is usually due to Hashimoto’s (commonly known in UK as autoimmune thyroid disease).
Link about thyroid blood tests
thyroiduk.org/getting-a-dia...
Link about Hashimoto’s
thyroiduk.org/hypothyroid-b...
Link about Graves’ disease
thyroiduk.org/hyperthyroid-...
List of hypothyroid symptoms
thyroiduk.org/signs-symptom...
We see many early stage Hashimoto’s patients misdiagnosed as having Graves’ disease .......hence all the questions
Hashimoto’s frequently starts with transient hyperthyroid results and symptoms.
Hair loss is often linked to low iron and ferritin...much more common with Hashimoto’s than Graves
Weight gain often, but not always, Hashimoto’s. Some Graves patients do gain weight
So which antibodies were tested and what were the results ? Important to know as we do see people here who have been wrongly diagnosed with Graves when it is Hashimotos.
Ask for copies of your blood test results and post them here. What were the symptoms that led you to see the doctor and for them to diagnose Graves'. Are you taking any other medications? Sorry for all the questions but they will give a picture of what is going on.
I had and still have itchy raised bite like spots on my top half of my body and after a few different creams I insisted on a blood test, which then came back with overactive thyroid which they still couldn’t stay was linked to the spots either, no other medication
Will have to wait and see the blood test results. Doesn't sound like Graves' but I believe it can present with skin problems sometimes.
Itchy spots can be gluten intolerance, especially common with Hashimoto’s but can get with Graves’ disease too
I would ask Elaine Moore for advice she has Graves' disease and helped me to get diagnosed 10 years ago.
Here is a link to her site
ideally I’d like to try and use natural treatment, I’ve started taking b12 and biotin and multi vitamins.
What natural treatments did you have in mind? As far as I know, there are no natural treatments for Grave's or Hashi's - or any thyroid problems, come to that.
Did you get your B12 tested before starting to supplement? Very unwise to start supplementing without testing first. You need a base-line. It could be that your B12 is so low you need testing for Pernicious Anemia. If you do have Grave's or Hashi's, which are both autoimmune diseases, then it's very likely you have Pernicious Anemia too. But, you can't get tested for that when you're taking B12, it will skew the results.
Have you had any sort of blood test since taking biotin? If so, did you stop the biotin a week before the blood draw? Because biotin in your system can skew the results.
As for multi-vits, well...
You shouldn't be taking a multivitamin anyway for all sorts of reasons.
* If your multi contains iron, it will block the absorption of all the vitamins - you won't absorb a single one! Iron should be taken at least two hours away from any other supplement except vit C, which is necessary to aid absorption of iron, and protect the stomach.
* If your multi also contains calcium, the iron and calcium will bind together and you won't be able to absorb either of them.
* Multi's often contain things you shouldn't take or don't need : calcium, iodine, copper. These things should be tested before supplementing.
* Multi's often contain the cheapest, least absorbable form of the supplement : magnesium oxide, instead of magnesium citrate or one of the other good forms; cyanocobalamin instead of methylcobalamin; folic acid instead of methylfolate; etc. etc. etc. This is especially true of supermarket multis.
* Multi's do not contain enough of anything to help a true deficiency, even if you could absorb them.
* When taking several supplements, you should start them individually at two weekly intervals, not all at once as you would with a multi. Because, if you start them all at once, and something doesn't agree with you, you won't know which one it is and you'll be back to square one.
* Most supplements should be taken at least two hours away from thyroid hormone, but some - iron, vit D, magnesium and calcium (should you really need to take it) should be taken at least four hours away from thyroid hormone.
* The magnesium you take - and just about everybody need to take it - should be chosen according to what you want it to do:
Magnesium citrate: mild laxative, best for constipation.
Magnesium taurate: best for cardiovascular health.
Magnesium malate: best for fatigue – helps make ATP energy.
Magnesium glycinate: most bioavailable and absorbable form, non-laxative.
Magnesium chloride: for detoxing the cells and tissues, aids kidney function and can boost a sluggish metabolism.
Magnesium carbonate: good for people suffering with indigestion and acid reflux as it contains antacid properties.
Worst forms of magnesium: oxide, sulphate, glutamate and aspartate.
With a multivitamin, you are just throwing your money down the drain, at best, and doing actual harm at worst. Far better to get tested for vit D, vit B12, folate and ferritin, and build up your supplementation program based on the results. A vitamin or a mineral is only going to help you if you need it, anyway. More of something you don’t need is not better, it's either pointless or even dangerous, as with iodine, calcium, iron or vit D. 
Thank you for your reply, I’m very confused as when I said to my consultant about taking b12, biotin and multivitamins(centrum) she said that was fine
Well, what does she know? Doctors don't learn anything about nutrients in med school, they know nothing. You might just as well stand at the bus stop and ask the first person that comes along. Far better to take guidance from this forum, where people have actually looked into the matter.
It’s so disheartening because you rely on the professionals, And then to find that their advice is pointless, I don’t understand about blood levels etc I’ll post what my levels are as I was sent those
Yes, I know, it comes as a terrible shock to those of us with thyroid problems when we find out doctors know nothing about it, and can even make our condition worse! What's more, they just don't care. But, that's the way it is, I'm afraid.
Have you found out which antibodies you were tested for? If you post everything you have - maybe in a new thread, so that more people will see it - people will happily explain about blood levels and answer any questions you might have.
Great thank you
I’ve got no idea what antibodies I was tested for, all I know was that it came back as Graves’ disease
Correction. Your doctor said it came back as Grave's disease. But just because he said it, doesn't make it true. They are often wrong. As crazy as it may sound, many endos don't know the difference between Grave's and Hashi's. And they test for the wrong antibodies. We see it all the time on here. You have to keep tabs on them all the time, and double check everything. The law says you are entitled to copies of your blood test results, so you should make sure you get them.
I’ve found my letter that I received 2 weeks ago this is after I was told to stop Carbimazole immediately
TSH 102
FT4 3.4
FT3 3.5
It says diagnosis Graves’ disease (positive TSH receptor antibodies)
Good lord! You are very hypo, now. He probably should have stopped the carbi long before it got to that point.
OK, so those are Grave's antibodies - TRAB. But, if you have Grave's, it's amazing that you got so hypo so quickly, on so little carbi. Don't know what to make of that. pennyannie , what do you make of these results?
In their defence I didn’t have blood tests due to shielding so this was after 6 months of being on 20mg with no review
That's no defence. An endo should know how critical this treatment is, and should make sure his patients get correct treatment. Leaving you for 6 months is very unprofessional. It hasn't even been six months since shielding started, and people on carbi should have a blood test every four weeks.
When i had the blood test 2 weeks ago I was due to start back on carbi at 5mg after a week off of the 20mg for 6 months but I wanted to see what my levels were before taking medication again I feel so much better for not taking anything at the moment,
I would imagine you do!
So, what did your endo say about these levels?
Not a lot just that I need to stop taking them immediately and the restart on the 5 mg a week later to which I said That I’m not taking any carbi until I have the next blood level results on the 17th July
Wise decision. That's the last think you need. As I said, you are now severely hypothyroid, in other words, you've gone the other way! And that is why you are now having hypo symptoms: my hair is falling out and my personality drastically changed and I put on 1 and a half stone, So, it rather looks like you've been hypo for quite a while, now, to have put on that much weight.
Yes now I feel more myself I’ve lost half a stone and am not confer eating due to my feeling more myself
Do you know what I should be on? So I can go armed when I have my telephone consultation on the 21st with new blood results?
What you should be on rather depends on what your next blood tests show. But, certainly, at the moment, you shouldn't be on carbi.
Thank you so much for your advice, are there anything food wise you could recommend, do you think I could be gluten intolerant causing the itchy spots? I’m open to trying any foods
There's nothing you should be eating, only perhaps things you shouldn't, like gluten. With an autoimmune disease you certainly could be gluten-intolerant - or even have Coeliac Disease. But, if you're going to go gluten-free to see if it helps, it has to be 100%. Almost gluten-free won't work. But, it's worth a try.
Thank you
You're welcome.
Do let us know what your next set of labs is like, and how you get on with the endo.
Will do thank you
Hey there again
I don't know but the itchy spots might be due to the Carbimazole.
There is an alternative AT drug commonly referred to as PTU - Propylthiouracil :
Do you have the original blood test result, prior to taking the Carbimazole ?
Basically your metabolism has been slowed down too much now and you may find your ability to extract essential nutrients from your food compromised.
Obviously eat good, fresh healthy food as it is important to keep your core strength strong and it might be an idea to get your ferritin, folate B12 and vitamin D levels tested and these need to kept at optimal levels to support you.
You might like to read " around Graves Disease " - and dip into the Elaine Moore Graves Disease Foundation website - there are sections you what you can do to help yourself with regard to life style, diet, and alternative, holistic options that you might like to know about.
I had the itchy spots prior and had them for years and Went for blood test this was the reason it was found that I have Graves, Otherwise I’d not have known. I’ve requested my blood results from the gp so should get those soon in the post, I’ll deffo look at elaine Moore thank you so much
Well that's interesting as I had similar itchy, watery spots in my teenage years. and at 11 I also suffered with bald patches in my hair which were treated by painting them with brown iodine. :
Both hives and alopechia are auto immune conditions and both found on the Elaine Moore Graves Disease Foundation website :
I'm so sorry I learnt of my situation from you, 10 years after I had RAI thyroid ablation for Graves and I didn't know anything way back then in 2003/4 and was totally compliant and have no copies of blood test for comparison.
I would guess the degree and level of TR ab blocking would influence these readings and of course the dose of the AT drug:
To be honest I believe I was undiagnosed hypothyroid for many years prior to my diagnosis. My Graves trigger was, I believe, being physically threatened and verbally abused by a man I employed, and four months later diagnosed Graves. Confused and in a state of shock I ended up at the doctors with insomnia, exhaustion and dry gritty eyes.
I never needed beta blockers, and the Carbimazole sorted me out, sorry, can't remember the dose but told at my very first endo appointment I would be having RAI treatment in about 15 months time, and I accepted this news as I believed the doctor had my best interest at heart, and knew best.
Thank you.
Hello Violetlilyboutique
There are two main reasons why your thyroid may have become overactive and the suspicion that you may have Graves or Hashimoto's Disease.
These are both auto immune thyroid diseases and both start with a ' hyper ' phase and in order to know exactly which one you have you need to have the antibody blood test for Graves which is either a TSI - ( stimulating ) or a TR ab - ( blocking ) positive blood test.
If there is the medical evidence and a positive for Graves you are treated with an anti thyroid drug, like Carbimazole and this blocks your own thyroid production, so in effect turns off your metabolism which explains some of your current symptoms.
Hashimoto's is not treated with anti thyroid drugs as ultimately with this disease, your immune system, over a period of many years, slowly destroys your thyroid, gradually reducing it's output and you will require thyroid hormone to replace that which you will be loosing as your thyroid production declines.
Please confirm back exactly which anti bodies were tested, and the numbers and ranges of your very first blood test before being prescribed the Carbimazole.
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