hi
I was diagnosed last year with an over active thyroid, after having 3 mini strokes my heart was beating at 200beats a min sat down!
I’ve got greaves disease I was on carmibasol but due too side effects I’ve had to come of recently.
Any advice on what I should do next?
Thanks rich
There is a similar thyroid drug called PTU (Propylthiouracil) that suits some people who can no longer take carbimazole. Do your doctors know that you have stopped the carbimazole and have they suggested trying that? Can you take beta blockers?
yes the doctor said try stopping see if my symptoms stop. And they have but my thyroid bloods came back today. And have rose from 10 to 26 from my last 6weekly blood test
What about your hospital consultants?
Do your endocrinologist and whoever you’ve been seeing about your strokes communicate with each other?
I’ve always found that consultants only seem to want to deal with ‘their’ part of your body and treat each problem in isolation.
Hopefully someone who has more ideas to help will come along soon.
“rose from 10 to 26 from my last 6weekly blood test”
presumably this was Ft4 ?
What was range on Ft4?
Different labs have different ranges
Most common is 12-22
Obviously Ft4 10 if range was 12-22 ….. Ft4 would be too low
Carbimazole needed reduction
How much carbimazole were you taking
GP could/should have reduced dose SLOWLY
I’m a bit blazay I’ve only now got realised the doctors are a joke hence joining this forum, I’ll start asking more questions
😂😂😂😂😂😂 I’m the middle man I’ve had nothing but nightmares and delays surprised I’m still alive to be honest
I had a blood test at Xmas which I chased up knowing my meds needed changing I had to kick of it took them 6 weeks to act just before my next blood test absolutely shocking
so if you don’t mind me asking what’s your history
Rich you need to directly reply to alert the member. Fruitandnutcase
pennyannie you might be able to help since you had graves
If you click on my name/ icon then you’ll be able to see my history. 😊
welcome to forum
What rose from 10 to 26? Eg FT4? what was range?
How much carbimazole were you taking & for how long? initially a higher dose is given but often this can be reduced & side affects from the medication can greatly improve with lowering dose & time.
What are your other blood test results. TSI or TRab confirm Graves. What was result & range. There are other reason to have hyper & it can be transient. Was TSH, FT4 & FT3 all tested?
Hello Rich and welcome to the forum :
Can you share with forum members your original blood test results and ranges at diagnosis and which anti bodies were over range and positive ?
As already mentioned ask to try PTU - as the most current research suggests the longer the patient stays on the AT drug and better the long term outcome for the patient.
pubmed.ncbi.nlm.nih.gov//33...
Grave is an auto immune disease and something has triggered your immune system to turn and attack your body rather than defend it and of course, the 64 million $ question is why me, and why now?
There is likely a genetic predisposition to Graves with someone maybe a generation away from you with thyroid health issues and many patients detail stress and anxiety as being Graves Triggers.
All the Anti Thyroid drug does is block your own new thyroid hormone production while we wait for you over range T3 and T4 to fall back down into range and hopefully your symptoms relieved - and it takes as long as it takes for one's immune system to calm down and you might learn of some practical tips that may help you.
If you dip into the Elaine Moore Graves Disease & Autoimmune Education Foundation website - Elaine has sections on the immune component of the disease and writes about work/life balance and relaxation and more holistic and treatment options that help some people get a handle on their own situation.
I can’t remember dose exactly, they put it down then I went under,then they put it up and I went over.
I’ve been diagnosed with greaves by the doctor, well originally she tried saying I had hoshamota dise
sorry phone glitch.
I explained to the doctor that couldn’t be the case as I would be under active if I had that!
During the early stages of patients having Hashimoto's Thyroiditis it is common for them to have an early phase of being hyperthyroid, but eventually they become hypothyroid.
But there is a big difference in the results of someone having Graves Disease (GD) and someone having Hashi's.
I made a post with some made up figures that you might find helpful :
Carbimazole lowers what new hormone can be made, take too much the TSH rises high and FT4 & FT3 drops (hypothyroid) take too little the TSH drop because the FT4 & FT3 are too high (hyper).
Poor monitoring & inappropriate adjustments can result in terrible symptoms from causing levels to drop & rise.
Hashimoto’s is -ultimately- underactive - & is caused by the immune system attacking your own thyroid ( autoimmune ) BUT early on the damage to thyroid causes release of hormone stores & high thyroid levels. As this continues the damage results in lower function. So if you have high TPO or TG antibodies without Graves TRab & or TSI Antibodies it’s likely you have Hashimoto’s.
TPO & TG appear in both, TRab & TSI are accepted evidence of Graves. So you do need to ensure which antibodies have been tested because often doctors test TPO and accept this is evidence of autoimmune & if TSH low assume Graves without testing.
Have you had TSI or Trab antibodies tested to definitely confirm Graves’ disease
High TPO or TG antibodies can be Hashimoto’s or Graves’ disease
Usually with Hashimoto’s TPO and/or TG antibodies will be higher than if raised with Graves’ disease
Hashimoto’s frequently starts with transient hyperthyroid symptoms and results before becoming increasingly hypothyroid
Both Graves and Hashimoto’s it’s EXTREMELY common to have low vitamin D, folate and B12 ……with Hashimoto’s low ferritin…..with Graves’ disease high ferritin is more likely
Similarly gluten intolerance often is an issue
Recommend gets coeliac blocked test before trying strictly gluten free diet
why what does gluten do? I’ve just been prescribed last week cynaocobalamin tabs , as bloods said I was deficient I think that’s b12?! I’ve been diagnosed with greaves from what I can remember….. my mum has it so I suppose that’s how I’ve got it
I suggest buying some methylcobalamin 1000mcg tablets in place of the cyanocobalamin.
The different forms of vitamin B12 available are described in this link :
perniciousanemia.org/b12/fo...
thanks for info
You need to see actual vitamin results for B12, folate, vitamin D and ferritin
If B12 is low, then low folate extremely common too
Do you have Low B12 symptoms ?
b12deficiency.info/signs-an...
methyl-life.com/blogs/defic...
With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a separate B12 supplement ……..and ideally add a separate vitamin B Complex after a couple of weeks to keep all B vitamins in balance
Then once your serum B12 is over 500 (or Active B12 level has reached 70), you may be able to reduce then stop the B12 and just carry on with the B Complex.
If Vegetarian or vegan likely to need ongoing separate B12 few times a week
Very effective B12 drops
natureprovides.com/products...
Or
B12 sublingual lozenges
uk.iherb.com/pr/jarrow-form...
cytoplan.co.uk/shop-by-prod...
B12 range in U.K. is too wide
Interesting that in this research B12 below 400 is considered inadequate
healthunlocked.com/thyroidu...
Difference between folate and folic acid
healthline.com/nutrition/fo...
B vitamins best taken after breakfast
Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule)
Thorne currently difficult to find at reasonable price, should be around £20-£25. iherb.com often have in stock. Or try ebay
Other options
healthunlocked.com/thyroidu....
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
endo.confex.com/endo/2016en...
endocrinenews.endocrine.org...
In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate methyl folate supplement and continue separate B12
Gluten
A strictly gluten free diet helps or is essential due to gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
Changing to a strictly gluten free diet may help reduce symptoms
While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first
Assuming test is negative you can immediately go on strictly gluten free diet
(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)
Trying gluten free diet for 3-6 months.
If no noticeable improvement then reintroduce gluten and see if symptoms get worse
chriskresser.com/the-gluten...
amymyersmd.com/2018/04/3-re...
thanks for all the info and taking the time and effort much appreciated
Gather up all blood test results from your diagnosis and since
You need to keep good records and monitor your results and symptoms …..plus what medications you were thyroid
Test vitamin levels at least annually
how come people get private tests? Are they better than the docs? Thanks for all your time very much appreciated
As you are hyperthyroid you should get TSH, Ft4 and Ft3 tested every time
But you also need vitamin D, folate, ferritin and B12 tested at least annually
You need thyroid antibodies tested at least once
TSI or Trab antibodies for Graves’ disease
TPO and TG antibodies for both Hashimoto’s and Graves’ disease
how come people get private tests?
Doctors believe that all they need to know about the thyroid is how much TSH is produced. And TSH isn't even produced by the thyroid it is produced by the pituitary.
Knowing just the TSH means that there are various thyroid conditions that doctors can't even diagnose. One example of this is Central Hypothyroidism. In this condition the pituitary can't produce enough TSH to stimulate the thyroid to produce enough T4 and T3.
So, patients who want to have more information about their thyroid status get their TSH, Free T4 and Free T3 tested privately. If they want to know if they have Hashi's they will get their thyroid antibodies tested. The NHS will test TPO Antibodies but won't test Tg antibodies - and either or both can be indicative of the person having Hashi's.
The other problem is that doctors treating people assume that a certain level of TSH will guarantee a certain output of Free T4 and Free T3, even though a person with a TSH of 10 might have a T4 and T3 which are bottom of range, or could be under range, or, admittedly unlikely, even mid-range.
Doctors have endowed TSH with almost mystical properties, it seems.
The other thing that is common to thyroid disease is that people develop problems with absorbing nutrients because of problems with their stomach acid levels. But doctors think any nutrient that is in range is fine. So, they can see someone with a ferritin level of 15 when bottom of range is 13 and say that the patient is fine. But of course they aren't.
So, we get private testing done so we can improve our nutrients, consider dietary changes, try out higher doses of Levo which we source online or from private doctors, or try different forms of thyroid hormones e.g. T3 or NDT.
We care about how well we feel - doctors rarely do. If the TSH is in range the patient is assumed to be well, and they can be discharged and told to get on with their life because everything is "normal", and their symptoms are just in their heads, and at most they need an anti-depressant.
We want more than that - we want to be well.
thanks for your response,, they prescribed me happy pills last week😂😂
You can have both. I have not read all those comments here yet, but I would suggest you get copies of your labs. It is important to keep them for your own records and for you to follow your treatment.
So I’m a year in now and still feel I’m at the exact starting point I was at nearly a year a go!
The problem is I know medical science advances yr on yr, so I’ve been holding out on permanently removing my thyroid.
What is the pros and cons to keeping it or not keeping it?
If you have Graves Disease the following 2 research papers are the latest we have :-
pubmed.ncbi.nlm.nih.gov/338...
ncbi.nlm.nih.gov/pubmed/306...
The thyroid is the victim in all this and not the cause - as the cause is one of your own immune system response having been triggered - why this happened to you, and why last year - is a whole other issue to be looked at by you.
P.S. I have just read your Mum has ' it ' - so yes there is likely a genetic predisposition to most AI disease - we still need to know which AI disease you have -
P.S. What treatment did your Mum get ?
Graves is considered life threatening if not medicated :
Flipping you from hyperthyroid to hypothyroid simple means that without a thyroid you will be hypothyroid and this is treated by you primary care doctor and not under an endocrinologist or in a hospital setting and you will be on medication for the rest of your life - treatment for hypothyroidism is limited - as the knowledge of thyroid is limited and the current guidelines are not fit for purposes hence why so many of us self medicate.
The thyroid is a major gland, and likened to being the body's engine- you can't live without a thyroid and living well on thyroid hormone replacement is not an easy fix for very many people.
Currently the NHS routinely offer only 1 of the 3 tried and tested treatment options - and many of us are forced to go private or self medicate if T4 monotherapy doesn't restore our health and well being.
I'm with Graves post RAI thyroid ablation and deeply regret this treatment and feel hypothyroidism much more challenging to treat than hyper - and am self medicating as the NHS seemed to be unable to help me get better when around 8 years post RAI thyroid ablation i became seriously unwell.
There have been no advances in medical science regarding the treatment of Graves - it is a poorly understood and badly managed auto immune disease and mainstream medical can only suggest removing the thyroid if your symptoms are not well controlled on the AT drugs and your life miserable and intolerable.
There was a vaccine being developed for this auto immune disease but then Covid hit as did Brexit - it was a European funded R & D project which now seems to have been shelved - could be wrong i haven't looked it up for a while - but it's called Project Daviad and you can find details under research on the British Thyroid Foundation website.
Please register with your surgery for online access and please share with forum members your original blood test results and ranges at diagnosis - we need to see a TSH, Free T3 and Free T4 reading and range and which antibodies were found positive and the medical evidence and proof of Graves Disease antibodies.
Antibodies will likely be written as either /or/and - TPO: TgAB; TRab: TSI : these all mean something different and we need to isolate which of these you had over range - also -
something might be written as a " thyroid receptor blocking " antibody with a number alongside this wording ?
What health issue is your mother dealing with - what treatment has she had and what medication, if any. is she now taking for " it " ???
my mum took the iodine she’s now on theroxine,but she has many more illnesses so hard to tell what causes her symptoms she has many symptoms
OK - thanks for replying :
So Graves is treated with radioactive iodine - RAI 1-31 - and I too have Graves Disease and was treated with this toxic substance, put on thyroxine and became more ill :
That is why I'm writing suggesting you stay on the AT dug as long as possible -
Did you read those links I sent you - here they are again as you have a lot going on and in information overload.
This first link is about the longer term consequences of RAI treatment - so read and share it with your Mum - ncbi.nlm.nih.gov/pubmed/306...
and this link suggests the longer the patient stays on the Anti Thyroid drug the better the long term outcome for the patient - pubmed.ncbi.nlm.nih.gov/338...
There are 2 anti thyroid drugs -
Carbimazole and Propylthiouracil - ( PTU for short ) - have you tried both ?
Have you tried Block and Replace treatment -
whereby you take a high dose of AT drug PLUS a daily dose of thyroxine so you do not suffer the equally disabling symptoms of hypothyroidism- like your Mum ?
A thyroidectomy is the last option - but it doesn't mean you are ' better ' as it's a long road for some people post Graves and taking the thyroxine does not suit everybody and the NHS routinely only offer thyroxine -
This is the same medication your Mum is on - and this information applies to you both.
If you can't restore your health and well being with thyroxine, there are other treatment options - but the NHS routinely only prescribes thyroxine and to get better you may have to go private, or self medicate and buy your own thyroid hormones which is what I do.
Basically there are 3 treatment options when living without a thyroid for whatever reason - and the thyroid supports you every day with 5 known substances :-
trace elements of T1. T2 and calcitonin + a measure of T3 at around 10 mcg + a measure of T4 at around 100 mcg - with T3 known to be around 4 times more powerful than T4.
The first treatment option is thyroxine what your Mum is taking - T4 thyroid hormone and what the NHS prescribe to everybody first.
The second option is T3 thyroid hormone - called Liothyronine - and it is a lot more expensive and generally not encouraged within the NHS system for new patients. Some patients tale T3 only and other patients take a T3/ T4 combo to rebalance these 2 vital thyroid hormones to restore their health and well being.
Whilst others take Natural Desiccated Thyroid which contains all the same known hormones as that of the human gland and derived from pigs thyroid - dried and ground down into tablets referred to as grains.
I now self medicate and take the NDT and am much improved - my health is not fully restored because of the radioactive iodine, but I'm a dam site better than how the NHS left me.
thanks for all the info, the doctor doesn’t ever mention and science stuff like t3 t4 she only ever said I’m under/over that’s it’s very basic conversation!
I’m literally under change meds,then over change meds then under….etc etc etc been nearly a year and feel like still at the same point as when I first got diagnosed!!!!
I’m tired all the time my joints hurt and I’m constantly taking days of work. Luckily for me my dads given me a lot of money so I’m ok for now
OK - so with Graves Disease your thyroid is being attacked by either :-
stimulating antibodies causing hyper type symptoms or
blocking antibodies causing hypo type symptoms -
and these 2 extremes can interchange with each other -
and there will likely be phases where you feel relatively normal for a while.
There is no way of controlling these antibodies, and they are playing football with your thyroid and you are on a Roller Coaster of highs and low symptoms.
The blood tests tend to run a few weeks behind the symptoms and all the AT drug can do is block your new own thyroid production while we wait for this football match to end :
My symptoms were not extreme and I was better on the AT drug and wished I had stayed on it longer term but wasn't given any options and didn't know anything back in 2004/5. and just did what I was told.
Your symptoms are serious and if you haven't tried Block and Replace I think it worth a go :
Your dose of the AT drug is high enough to fully, totally block any new thyroid production but you are also put on a dose of thyroxine so you do not suffer the extremes of hypothyroidism.
So in a football context - we can't live without a thyroid - so we stop the thyroid football game by taking the air out the ball ( thyroid hormones - and just put back in enough air ( thyroid hormones ) so the ball ( the thyroid ) can function but its power and effect minimal and just ticks over - idling - but it works and you have some stability in this roller coaster of events.
Does that make sense ?
Have you tried B & R ?
Does the Carbimazole agree with you have you tried PTU ?
I'm guessing since it would seem your Mum has Graves that you do :
Though for some offspring they are actually dealing with Hashimoto's -another AI thyroid disease ?
So, please, get online access to your medical records and look back to your original diagnosis and share with forum members you first blood test result at diagnosis and is there is the medical evidence of which antibodies were found positive - TPO ? TgAB ? TSI ? TR ab ?
how do I access my online records? To be fair I’m struggling to get it there’s a lot of info to take in.no I stopped the carmibasole a few weeks ago because of the side effects (itchy legs, and nit sleeping because it felt like some one was shaking and poking my mattress .
I’m now currently over active and waiting for the doctor to get an answer of thyroid people what to do next! This always takes way to long last time I was waiting nearly 6 weeks absolute joke……
Graves is considered life threatening if not medicated :
Get back on an Anti Thyroid immediately -
ask to try Propylthiouracil - known as PTU for ease of speech and offered if not able to tolerate Carbimatole :
Speak today to doctor or your endo at the hospital - we need to know exactly that the medical evidence is Graves - and you must not be left without AT medication.
You register with the urgery, through the receptionist for online access - think there is a form to be filled in ;
but first get back on an Anti Thyroid drug and ask for the alternative to Carbimazole - PTU - Propylthiouracil today.
thanks for your reply much appreciated going to call hospital now
OK - good - keep us in the loop :
When I was first diagnosed with graves my GP put me on beta blockers(propranonol) 20mg 3x a day to cope with symptoms like fast heartrate, sweating, shaking hands etc. until I got my endo appointment through.I was waiting from July to September and I don't ever want to feel like that again.How I coped I don't know, I lost about a stone, was constantly sweating and hardly slept due to the internal shaking and restlessness.Would beta blockers be ok with your heart situation and previous mini strokes?If I were you, knowing what I know now I would have private bloods(see info given by others) to see where you are now and post them on here.If your funds allow,the site has a list of private endos who could see you earlier and you will already have your private blood results.It really is unacceptable for you to wait in this state.Your levels could contribute to further problems with your heart, did your heart specialist say anything about your thyroid needing to be kept under control.I know it is alot to think about and I could only think about so much, I just wanted to put my head in the sand.But just take one step at a time then tick each thing off your list as you do it.That's how I cope.The symptoms you mentioned like itchy legs and shaking in bed and not sleeping were symptoms of Graves for me, not the carbimazole.Could you have got mixed up and thought it was the carbimazole instead of the graves.Anyway there is an alternative to carbimazole for people who can't tolerate it, it's called PTU so that might be Ok for you.Surely they can't just leave you with nothing.Unfortunately the carbimazole or PTU doesn't work straight away either, so it will be a couple of weeks until you feel a difference.It stops new production of thyroid hormone, but all the extra swirling about in your body takes time to be used up.You have to ring the doctors to get online access.Tell them you need to see all your blood test results.Don 't know if it will be an app.I didn't do mine my son does it, I am useless with tech.Hope you get some answers.
100 the carminasole because once I stoped taking it I could sleep again,I’m currently about 3 weeks on no thyroid meds and my bloods come back last week at 26(over) yes my cardiologist said I need to be stable
That's OK then, just thought I'd check.Just seen your reply to pennyannie, good you're calling the hospital.Your medical history shows you need to be treated sooner rather than later.Best of luck.
Thankyou
Hello there, I was diagnosed with graves disease in 2018.I tried carbimazole only(titration) and carbimazole and levothyroxine together(block and replace).I had much the same exoerience as you.Too long between appointments, going too low, going too high.I have learned alot from this forum and understand my condition much more.However I decided to have a thyroidectomy last June.For me I had given everything a good go and I don't have the money for private care or medications(apart from blood tests).I am doing OK on thyroxine only but I had realistic expectations and knew it would be a slow process after the operation.I do not regret it and am going through a dose change at the moment.Learn as much as you can from more knowlegable members, write and keep hold of all blood results, have private bloods if your budget will allow as many medics don't test all thyroid hormones and vitamins, chase things up if neccesary.I know it can be very frustrating trying to reach people and get answers.In the end you have to be happy with the decision you make.My story is on my profile if you care to read it.Just click on the picture at the side of my name and there it is.Wishing you all the best.
thanks for sharing your story! Much appreciated to be honest I’m getting tired, frustrated and p#*sed off to put it mildly.
I’m a self employed builder and I’ve had so much time of work you wouldn’t believe.
They don’t seem too appreciate how much it’s effecting my every day life plus my previous relationship was impacted. I’ve now got strip fibulation(irregular heart beat ) due to last years strokes.which I’m having on going issues with my heart now and on a yr waiting list due surgery all because of my bloody thyroid
Yes, you've had a really bad time of it but now you've found this site there will be lots of help and support for you.Even small bits of advice I found could really make a difference.At first I was really overwhelmed with all the information but I just looked a bit at a time and learned that way.Best wishes to you.
With low B12 it is possible your Homocysteine is raised. This can be a marker for strokes and heart issues.
I'm not sure anyone has answered your question about blood tests.
I would definately start with - a full thyroid blood test. Post the results here
It would be good to confirm you have Graves (and not just only Hashimotos) and also look at your vitamin levels. I know it seems as though you are going backwards, but it might be worth just understanding what you have.
Also, are you aware that even with the diagnosis you have now, i think you can apply for a medical exemption certificate. This gives you free prescriptions. You get this form from your surgery. Also when you are there, ask for phone access to your medical tests etc, this will also allow you to order repeat prescriptions.
thyroiduk.org/help-and-supp...
Having a thyroid issue or taking carbimazole doesn’t qualify someone for medEx (free prescriptions)
If someone is on continuous thyroid hormone replacement then they are entitled. Different areas (wales / Scotland) may be different.
nhsbsa.nhs.uk/check-if-you-...
Yes, another reason to double check the diagnosis.
I’ve just done a £35 pound test with medichecks will that be enough
I think that test TSH & FT4 only
The thyroid advanced would be better
no
You need TSH, Ft4 and FT3 plus antibodies and all four vitamins
Thyroid advanced test.
only do test early Monday or Tuesday morning
I had radioactive iodine decades ago..it sent me hypo..but it most often does..by and large I've had a reasonably good life on Levo..hyper was horrific..I feel for you
thanks for your reply,if I had it removed I think I would go for surgery, don’t fancy radioactive anything
Have your doctors suggested having partial removal of your Thyroid or Radioactive Iodine treat?
they mentioned there’s other options but I shut them down want too give this one chance first
Hi, were there any long term effects from your strokes? are you on any medz for them
no I was lucky. I’m on digoxin,adaxaban,biosporol.
Two lower my heart rate the last one is a blood thinner.
NDT Thiroyd & stroke risk
I’ve been taking too much T3
Well I’ve heard it all now!
niacin as cause of strokes and heart attacks?
I think I’ve messed up! 
