Graves Disease the challenge : There is none... - Thyroid UK

Thyroid UK

130,635 members153,926 posts

Graves Disease the challenge

Angel20 profile image
44 Replies

There is none lasting cure for Grave's Disease. It can only be managed through tablets like carbimazole. For many years the Endocrinologists follow a standard for treating Graves Disease. Nothing has changed there is non progressive evidence that a break through in treating Graves Disease has been proven to be 100 per cent successful and therefore the so called 'gold standard' is still being applied after so many years. I am personally disappointed as I also have Graves disease and I am reluctant going the Endocrinologists route knowing that I would most likely suffer bad side effects from carbimazole. The hair loss for one. Hair for women is their most beautiful asset they have - the possible liver disease could be triggered from carbimazole, and many more unwanted awful side effects. To this date we repeatedly read same old stories regarding Graves Disease nothing has changed and the Endocrinologists have it easy, their only way of treating Graves disease is by this old standard method still being followed today in the 21st Century. The concern I have is this that by taking the so called tablets to put me in remission which is not a permanent cure and whilst in the mean time will compromise and possibly destroy my body by doing so for me its a no. Until the Endocrinologists start looking at the source what triggered Graves Disease with a compromised immune their treatments are not worth considering in my view. They focus on TSH, T3 T4 and that's it. I am continuing with the alternative medicine in treating my Graves Disease, it is not easy and yet I feel it is a much better way for me in reaching my goals. I may not cure Graves Disease however I can manage the symptoms far more successfully that Carbimazole.

44 Replies
Fruitandnutcase profile image

I get the point of what you are saying about finding the source / cause and treating that but having had Graves a few years ago - I’ve been in remission for six years now - I really can’t imagine how, if you are / were as ill as I was, you are managing to control it without carbimazole.

Angel20 profile image
Angel20 in reply to Fruitandnutcase

Thank you Fruitandnutcase for your reply appreciate. However my concern is what carbimazole actually does to ones body. I am pleased you were able to take this drug many women cannot tolerate it. Could you please enlighten us the side effects you may have experienced. thank you

Fruitandnutcase profile image
Fruitandnutcase in reply to Angel20

I was very fortunate that I didn’t have any side effects when I was taking carbimazole- I’ve read that any problems with it start pretty much as soon as you start on it. I took 40 mcg daily for the first three months then 40 mcg plus ever increasing levothyroxine (block and replace) for the next nine months then one day when my levels were where my endo wanted them they be I stopped both.

Towards the end of my treatment I was always being told if I should relapse it was radioactive iodine for me. No way did I want that - I felt very well when I was being treated with block and replace and I didn’t want to take a chance on ending up with no thyroid and m GP not prescribing enough levo or heaven help me T3 should I need it - so I spoke to my GP about it, told her I would much prefer to keep my thyroid and was told I couldn’t be forced to have RAI and the hospital couldn’t refuse to treat me.

As Tanguara11 has mentioned I’m one of the people who went totally gluten free, rightly or wrongly I don’t tend to eat grains of any sort and although I’m not on a dairy free diet I don’t have much dairy in my diet. That was six years ago and being GF massively reduced my thyroid antibodies also reduced my CRP and my inflammatory arthritis is in remission too

Like Tanguera11 below I’d be really interested to know how you are dealing without conventional drugs.

Should add I’m not sure what it does to your body but it has to be better than radioactive iodine or it is for me.

Angel20 profile image
Angel20 in reply to Fruitandnutcase

So pleased to hear it has worked for you with much success well done

For me it’s vitamins and eating healthy

I do not perspire do not feel hot

I do not have heart issues palpitations

Hardly any symptoms and yet I have Graves Disease. My TSH is very low last time I had blood test it was 0.01

When I was first diagnosed early January 2019 my TSH was much better 0.05 with many symptoms my hair was falling I had palpitations and felt hot it is very strange with a lower TSH my symptoms are almost non existent I really cannot figure this out

I go private for blood and test results

I am due for another blood test the last one was 5 months ago

From my own experience stress plays havoc with my wellbeing

The more relaxed I am Graves is almost non existent I can get on with my life very well

I was in Greece this year summer

To my surprise one of my friends has Graves Disease she was given the anti thyroid medication made her feel much worse than before she is now hypo has put on weight her hair is falling by the hand fall she is only 30 years old.

Many women may find success with anti thyroid medication and many will not

Lucky you

Thank you for sharing your experience

Fruitandnutcase profile image
Fruitandnutcase in reply to Angel20

Couldn’t agree more about stress, I had two very stressful experiences before I was finally diagnosed - that was why I saw the GP to clarify what I didn’t want should I relapse. I definitely didn’t want to be worrying about that.

I don’t know what triggered it in the first place though.

I felt very lucky that I had no problems with carbimazole, my pharmacist came out and told me to take high strength vitamin c which I always did so perhaps that helped.

Good luck for the future ☀️

Angel20 profile image
Angel20 in reply to Fruitandnutcase

Thank you x

Billyboy2u profile image
Billyboy2u in reply to Fruitandnutcase

Me too NO side affects taking Levi and Carbimazole for 18 months on block n replace

Jamie5 profile image
Jamie5 in reply to Fruitandnutcase

I don't know what the best treatment option is. I recently got diagnosed with Graves. Everyday feels like an endless, desperate fight for survival. I don't want to destroy my thyroid (even though it keeps destroying me), but natural treatments aren't doing much. That being said, I'm scared of carbimazole. I'm also scared of accepting the disease in general. Even though it has been years, I keep thinking it will fade away.

Lora7again profile image
Lora7again in reply to Jamie5

I have taken both carbimazole (came out in a rash so stopped it) and PTU about 10 years ago and I was fine. A lot of people can be on these drugs for years and have no adverse affects. Rarely they can affect your blood count or liver. I am living with Graves' disease and although it has been a bumpy ride I am now on my second remission. You can read my story on my profile page.

Fruitandnutcase profile image
Fruitandnutcase in reply to Jamie5

I keep seeing people on here saying they are scared to take carbimazole and I can’t for the life of me think why. You're taking it for a relatively short time, if you are going to have a problem it will show up right away, you are monitored and told what to look out for - sore throat at which point even my surgery receptionist gave me an appointment for a same day blood test.

I’d be more scared of not taking carbimazole (or PTU) if I were you. Or spending years taking PPIs or some of the other commonly prescribed medications that are never followed up on.

If the cause of my current broken arm turns out to be osteoporosis then I know I’m scared and don’t want to take bisphosphonates because I had an aunt who took them and they didn’t halt her problem so in that respect I can see where you are coming from but as I said any problems with carbimazole will show up right away while problems with bisphosphonates don’t necessarily show up right away..

To stick my neck on the line - I really can’t see what sort of ‘natural treatments’ are likely to sort your thyroid out when it has gone haywire.

OK, I’ve gone totally gluten free to try and dampen down my antibodies - it worked) but my thyroid was fixed by that time.

You’ve got to accept that you’ve got Graves - it won’t go away on its own, especially if you’ve had it for years. From my experience not treating it doesn’t work although I suppose that might depend on how ill you are in the first place.

I remember being so relieved when I was finally diagnosed. I hadn’t felt well for years, had been made to feel like a hypochondriac for so long it - the thyroid causes so many weird symptoms - it was just a huge relief to be told something was actually wrong with me and that it could be fixed - must say that by that time I felt so ill I was on my knees.

As for the GP who recommended three months before I was eventually diagnosed that I was ‘needing my holiday’ - well it turned out that a good holiday in sunny climes, relaxation and good food etc just wasn’t the cure for Graves!

Should I relapse I’ll definitely be wanting to be treated with more carbimazole (I was treated with ‘block and replace’) even though I suspect they’ll try to offer me their magic RAI pill.

Billyboy2u profile image
Billyboy2u in reply to Fruitandnutcase

Me too. I’d never agree to mine being tampered with it’s a major gland that works for so many other things not just your Graves.

Billyboy2u profile image
Billyboy2u in reply to Jamie5

Try Carbimazole for a few weeks. You’ll know if it’s for you or not. You’ll not instantly loose all your hair at once you know. If brushing your hair and you find more hair than you usually get on the brush. JUST STOP ?

Lora7again profile image
Lora7again in reply to Billyboy2u

It might not be the carbimazole causing the hair loss. When your thyroid levels are too high or too low that can cause hair loss. I know this because I have lost 50% of my hair twice now and it wasn't caused by taking carbimazole or in my case PTU. Just to add once your levels are right for you your hair will grow back. Mine has been growing back now for about 8 months and I was able to have my hair extensions removed because I no longer needed them. Some thyroid disease sufferers do not grow their hair back because they have either been suffering for a long time and haven't been given the right treatment or they have another autoimmune disease as well. This is what I have learned from joining sites in the US and here in the UK. Elaine Moore's site helped me a lot in getting diagnosed when I had been ignored by Doctors for over 2 years.

Angel20 profile image
Angel20 in reply to Lora7again

The side effect states categorically hair loss the reason for this is because Endo gives a high dosage of carbi. It needs fine tuning to lower carbimazole so often to have regular blood tests. My Endo instead of waiting for me to have the ultrasound scan first he decided to put me on 10mg carbimazole, my response to this is why! the objective was to have the ultrasound scan we take it from there.

If I were to start the carbimazole it will be 2.5 mg and no more have blood tests and review it myself. Endo's dish out tablets at a very high dosage, my thinking is start lower and if necessary gradually increase by small amount until the right dosage is found for thyroid patients.

Lora7again profile image
Lora7again in reply to Angel20

I took PTU because Carbimazole gave me a rash. I did not lose more hair when I took it.

Just to add I did lose hair when my stupid Endocrinologist let my TSH get to 9 because he wasn't monitoring me properly.

Angel20 profile image
Angel20 in reply to Lora7again

This is the issue with the Endocrinologist they do not monitor people properly I feel I need to look after myself of course I will see the Endo however I go by what my body is telling me how I feel

I have this so called Graves for at least 3 years now

In Greece it was diagnosed Thyroiditis

The previous Endo said it was Graves Disease the first ultrasound scan suggested Hashimoto and the latest Endo is saying I have hyperthyroidism

Mmm ok

Fruitandnutcase profile image
Fruitandnutcase in reply to Lora7again

I wasn’t treated for a very long time - I was so ill by the time I found a doctor who recognised my symptoms as soon as she saw me and kept into action to get me sorted out.

I was told that I lost hair because I went from being below the reference range for TSH to 7 - a colossal jump. I was fortunate enough to see my senior consultant rather than one of her sidekicks and she said it was because there had been such a huge jump in my TSH that my body was on a roller coaster and that it would settle down.

Sure enough it did - thank goodness because it drove me round the bend. Believe it or not I used to photograph all the hair in the bottom of the bath when I washed it and I even got to the stage where I kept the fall out from each wash in little bank bags! Ready to show the next person who said ‘but you’ve got lovely thick hair’.

I knew that it wasn’t because when I washed it and squeezed the water out my previously thick chunk of hair was as thin as a pencil.

What I did end up with and which is amazing was that I went completely silver right across my hairline all the way round forehead, beside my ears and my neck. When I brush my hair back it is silver and when I let It fall forward it is dark again. When I put it in a French pleat I get lovely silver stripes so that has been a lasting gift from Graves.

Lora7again profile image
Lora7again in reply to Fruitandnutcase

I used to count how much hair I was losing (100s) and it put it in a bag to show my bald GP who told me it was unimportant. Now I lose 3 or 4 hairs a day which is normal for me. My hair is slowly growing back and is not as thick as it once was but it looks ok.

Fruitandnutcase profile image
Fruitandnutcase in reply to Jamie5

Don’t be scared of carbimazole. I actually felt really well on it and if I relapse that’s what I’m going to insist on.

I lost hair for a while - a general shedding when I brushed or washed it. That drove me wild but the reason was that I had become very hypo After taking a huge (40mcg) amount of carb for three months without a blood test so that I went from a TSH of below 0.03 which is below the lab reference range to 7 .0 which my endo described as my body ‘being on a roller coaster ride.’

Once I got started on levo along with the carb (I was being treated with block and replace ) my hair improved and grew like mad, it reached half way down my back. I’ve chopped it to collar length now.

I always took high strength vitamin C - that was on the advice of my pharmacist. I made sure my vitamins D and B12 were well up in their ranges, my folate sand ferritin were always good.

I ate a good healthy diet, oily flush a couple of times a week, chicken, eggs, nuts and seeds, lots of green leafy veg etc. I did eventually go totally gluten free but I had been in remission for over a year by then and my thyroid antibodies reduced massively after that.

I understand your fear - I have been prescribed bisphosphonates for osteoporosis - for five years. I haven’t started them yet - and the thought of taking them absolutely terrifies and scares me to death even though I know a lot of people who take them. Unfortunately now I’ve read the horror stories about taking them and I also know that the ‘natural’ option of eating well, exercising etc is what I’ve been doing for years and it hasn’t worked so far which leaves me in this dilemma.

I also can’t understand how doctors can quote happily prescribe something as nasty as bisphosphonates yet be reluctant to prescribe Carbimazole which to me was much less scary.

So, I’d say don’t be afraid, take those carbimazole they are going to help make you better. If your body is going to react - sore throat etc - it will happen right away, then you can try PTU which is similar or give up altogether and go for something else..

Angel20 profile image
Angel20 in reply to Fruitandnutcase

I have the tablets these are 10mg carbimazole. No ultrasound scan and yet the Endo prescribed them for me to pick them up from the chemist. My intention is to start low not what the Endo wants because I do not feel terribly unwell. 2.5 mg I will monitor it myself through blood tests.

Tanguera11 profile image

I was diagnosed with Graves in 2007. I suspect it developed over a number of years prior after a traumatic episode in my life. I was initially prescribed 20mg Carbimazole and thirteen years later my dosage is 5mg alternate days. My endocrinologist advised RAI or a thyroidectomy in 2017. After much research I decided to decline, at which point he released me to the care of my doctor with the understanding that I can return to him if needed.

I manage my life fine staying on Carbimazole, although the side effects are a nuisance - tremors in my hands, maddening itchy scalp, alternating from mad bouts of energy to utter exhaustion and then the unpredictable mood swings which can be quite challenging.

I do have hair loss but not noticeably so.

I think it’s great you’re managing your Graves with alternative medicine, and would be interested to know how it’s possible. I understand a major change of diet can help by switching to a Paleo diet cutting out gluten, grains and lactose. Have you tried this route?

Angel20 profile image
Angel20 in reply to Tanguera11

Thank you Tanguerall11. Initially I did go private for a consultation with an endocrinologist to which he immediately wanted to start me on 10mg Carbimazole. I threw the tablets away as I did my research was not pleased what others were saying about this drug. I failed initially with 2 so called natural medicine doctors that did not have a clue. I started taking I-carnitine morning and evening in addition Vitamin D3, Magnesium, E-200, alternating Silica 200 mg with Biotin for hair. I also go for acupuncture and body massage to reduce stress levels. I do not eat much meat hardly any in fact, my diet consists of salads, vegetables, fruit, yogurt, humus, with the occasional fish. I do not drink alcohol. I also go to the gym lifting weights 3 times per week. Overall I feel ok without severe Grave's disease symptoms. My hands do tremble occasionally when I feel stressed out. I have thick hair although I have lost some of it, nothing drastic avoiding hairdressers as heat can make hair much worse.

I have days when I feel a little tired and yet I go to the gym feeling much better after the gym session. I do not have the answers I am constantly looking for alternative ways to heal my body as I have antibodies. My eyes are fine thank goodness.

The more stress the symptoms become far more aggressive. The key is less stress to be happy it makes all the difference in ones moods.

There are many alternatives such as Lemon Balm for example it is just a matter of trial and error what works and what does not.

As for gluten I have not cut out cause mainly my food is vegetarian. I also recommend Bio-Kult which is a muti-strain formulation for the digestive system, it can help the gut.

I wish you well take care.

cazmania7 profile image
cazmania7 in reply to Angel20

I was fine on carbimazole. My problems started after RAI. I feel dreadful all the time. Prior to that I used to go to the gym every day and was really fit. Gutted. Good luck with your health. X

Angel20 profile image
Angel20 in reply to cazmania7

Thank you for sharing your experience

Sorry to hear the RAI has introduced other issues. Carbimazole has had bad reviews and it makes me wonder how some women can tolerate this drug and others do not. May I ask you what prompted the RAI decision was it recommend by the doctors and their reasons justified it ?

With your success with Carbimazole why the RAI I am asking so we can learn from your own experience with this decision taken

Thank you xx

cazmania7 profile image
cazmania7 in reply to Angel20

Hiya. I was on carbimazole for a couple of years but they said that long term the medication is bad for you. So they encouraged me to either have RAI or surgery. I really just went along with it all and trusted them. I wish I had been older and wiser at the time. I had RAI and went under active and in nine months I fell ill and still am ill. First they said it was my iron. Then they said depression. Then they said CFS. That’s what I’ve been living with but my instinct has always been that this is thyroid related and I suspect I need T3. I’m going to improve my iron and then add some T3. I feel unwell every day. It feels like a hangover. Had to reduce hours at work and lead a very simple life now. I wish I stayed on carbimazole but I’m sure we are all different

Fruitandnutcase profile image
Fruitandnutcase in reply to cazmania7

I have always felt that the rush to push patients into having RAI is that it’s a quick and easy way for endocrinologists to get rid of you and stop you cluttering up their clinics.

They kill off your thyroid and put you out to the mercy of your GP who may - or from what I’ve seen on here since I first discovered this site in 2012 may not manage to keep you well afterwards.

When I first joined this site patients although things were not perfect it was possible for hypo patients to be treated with NDT, T3 as well as levothyroxine. Now we see ourselves limited to a ‘touch’ of thyroxine and possibly tranquillisers when doctors can’t tell the difference between a patient with badly treated thyroid and a patient with depression.

Not being adequately medicated or being treated as menopausal by one’s doctors is depressing but that doesn’t mean to say that you are depressed.

To bring my long and grumpy rant to a close I’d say pushing patients into destroying their thyroid probably benefits doctors more than it benefits their patients. Although saying that I do recognise that there are probably lots of people out there who are fine after RAI.

Lora7again profile image
Lora7again in reply to Fruitandnutcase

I haven't come across anyone who is fine after RAI but if they are there is no need for them to use this forum is there. A friend of mines daughter who is 28 and has hyperthyroid has just had her thyroid removed. I did tell her to stay on block and replace but her Doctor said she needed to have it removed because she had been on it for 10 years now. I can only imagine how she feels now and I don't think she will be helped much by the NHS.

cazmania7 profile image
cazmania7 in reply to Angel20

I don’t practice what I preach but have you tried going gluten free? Graves is auto immune and gluten can be a trigger I’ve heard

Angel20 profile image
Angel20 in reply to cazmania7

I have not tried going gluten free. The reason being I tend to be far more on the vegetarian and yet I agree sometimes eat bread, pasta and grains. I will give it a go and see whether it helps me.

Have you considered going for a second opinion for the way you are feeling each endo doctor has their own analysis thinking and perhaps it may help to determine the cause. I wish you well cazmania7 xx

Angel20 profile image
Angel20 in reply to Tanguera11

I eat Mediterranean food

We use olive oil for cooking

I am fine with this food and most importantly it’s how the food will be prepared

Less fat it’s the best option

pennyannie profile image

Hello Angel

I was assaulted at work, in 2003 by a work colleague and 4 months later experiencing symptoms of insomnia, dry gritty eyes and exhaustion.

I was diagnosed with Graves Disease, at age 56 and on my first hospital was told I was to have RAI in 15 months time. I was well on Carbimazole and continued to work, which, in hind sight was probably not a good idea.

I was a manager of a charity coffee shop in the hospital, responsible or 60 odd volunteers manning the unit through a 7 day week,. I reported to my line manager the incident of my assistant manager, whom I had employed, and thought I needed to protect my more vulnerable volunteers from this man, as I tried to soldier on through. My company were impotent in resolving the situation, I tendered my resignation working a further 3 months and then fell down " in a heap " at the end of it all, in the privacy of my own home, and this outlying unit of a coffee shop closed down completely and taken back, in house, by the hospital.

I think my age determined my treatment of RAI.

I was not told of any other treatment, I was compliant, knowing no different in 2003/4 and followed the orders given to me by the medical profession.

RAI is the worst treatment option but the cheapest and best option for the hospital.

Hind sight is a wonderful thing.

I am now self medicating and buying my own thyroid hormone replacement, and am not interested in blood tests, ranges, and risks of this or that - the risk was drinking down RAI a toxic substance that is known to damage other glands and organs within the body.

I was never told about thyroid eye disease after RAI - had I - my vanity would have kicked in :

I have learnt of my situation back to front, I have been very ill with the long term consequences of RAI for which I have received no help or understanding from the medial profession, been referred to as a conundrum and left without any resolution.

Elaine Moore's book Graves Disease A Practical Guide, was my first book. She has Graves and went through RAI back in the late 1990's and finding no medical help, wrote this book to help others in a similar position to her. She is a medical researcher, her writing a little technical for me, but now she is leading the field in Graves and autoimmune diseases and fully explores the alternatives as well as conventional treatment available in 2019.

Being poorly and dyslexic it was a personal challenge but I then realised my Graves wasn't cured, as I had been told by the hospital, and, in fact, it never went away

Alongside this amazing site, and a few other books I'm putting myself back together as best I can..

Angel20 profile image
Angel20 in reply to pennyannie

I was told that Graves disease has a trigger and from my own experience it dates back from 2016 went through some tough times it became apparent to me in 2019 that I had issues with my thyroid. In reality it kicked in from 2016 was not apparent until 3 years later.

In your case so sorry to hear what you had to go through and probably the assault triggered something. You did the right thing by leaving toxic workplace.

This is the issue I have with Endo's they are too quick to jump the gun and offer RAI an easy option for them the consequences of RAI are many as you described.

Graves Disease its not curable it requires constant maintenance. Unless the route of the problem is identified Graves Disease will only go into remission for months and some cases few years.

Like you I am managing my own Graves Disease. It is a trial and error at the moment I am ok with that. I do not feel any worse. I will be introducing Lemon Balm for TSH and Howthorn for heart palpitations when required.

As for diet there is different views on what to eat with Graves Disease and feel that less diary products would be a good idea and also introducing Oats into ones diet helps with Graves Disease.

Pennyannie you are doing the right thing, by taking control of your own body and this is exactly what I am doing in finding the best way forward.

Thank you ever so much for sharing and wish you all the very best xx

pennyannie profile image
pennyannie in reply to Angel20

I didn't choose to self medicate late last year.

I was refused a trial of T3 on the NHS and felt I had no other option but to Do It Myself.

When diagnosed and treated with RAI in 2005, I was presumed ok and good to go.

No sick note was offered, there was no conversation about antibodies or why this had happened, and I was told I was better after the RAI and Levothyroxine was all I needed.

I was fortunate in that I had a small private pension that I cashed in at 57/8 to tide me over until 60, when my women's single person pension would kick in.

I had to pay rent, and would be have needed to work, but for these savings.

The financial consideration and implications of all this are serious, and when you are suffering a stress and anxiety related disease, it all simply compounds the issues.

My thyroid gave up around 8 years after RAI.

My symptoms then became seriously debilitating.

I was reliant on my doctor knowing the answers, but my TSH was in range, so I was ok.

I have since learnt after RAI whether for cancer or Graves, the TSH should be low suppressed, but this isn't in the guidelines that doctors work to.

We all know the guidelines are not fit or purpose but nothing seems to change, and I believe this is to the detriment of many women and discriminationary.

saz_2011 profile image

Hi there,

I have had Graves since 2011 and have been treating with Chinese herbal medicine. I've never taken Carbimazole. My thyroid levels return to normal within a few months with the Chinese medicine but I have carried on taking it to help my body recover as a whole. I have had another bout of Graves in 2016 and am presently having an attack at the moment. Both subsequent attacks have been after extremely stressful and busy periods. The Chinese herbal medicine is slower to work but treats my whole body. It didn't make sense to me to take a toxic drug when I have an autoimmune disease. The downside is that the herbal medicine is expensive.

Angel20 profile image
Angel20 in reply to saz_2011

Hello, thank you it is so refreshing to hear from you that the Chinese herbal medicine is working as I too have recently started taking their herbal medicine and in addition I have acupuncture, head and body massage. It is relatively expensive I feel it is worth it. Not to take the toxic drugs its a decision I made at the beginning of this year. Stress and thyroid do not go hand in hand and also have experienced this too. Stress kicks in the symptoms of Graves Disease. We sometimes cannot avoid situations that are stressful however it is about balance how much stress are we prepared to allow into my life cause stress is manageable. This summer I spent a couple of months in Greece no stress just sea good food a joyful time I never felt better the reason for this is because stress was managed in actual fact there was no stress at all. I personally will remove myself from anyone or anything that will compromise my own health.

May I ask you the Chinese herbal medicine you are taking is it in tablet form. I am just wondering if there is more than one type of Chinese herbs for Graves Disease.

Angel20 profile image

I had private blood tests on a Wednesday, blood test results take at least 1 week for the results to be available. To my horror the next day Thursday I had a call from this private practice stating that my thyroid blood test was available. When I checked the results on line they had used last year's [May 2019] thyroid results.

Called this practice and told me that my results will not be available straight away and to check the following week. The practice called me to say my thyroid test results were ready to be viewed. They made a right mess of things, since I paid a bit of money to have antibodies checked too, also Epstein Barr virus, B12, Iron etc. cannot trust them again.

Eight months ago was my last thyroid blood test. Fast forward, I feel really better. I tried bugleweed and made my condition worse so I stopped it. Continuing with L-carnitine, Acetyl L-carnitine, vitamin D3, Magnesium, CoEnzyme Q-10, Vitamin A twice a week.

Palpitation are gone, my hair looks and feels better than before. Hand tremor hardy noticeable. I am optimistic.

To date I have refused to take anti-thyroid tablets using the alternatives as mentioned above.

The proof of the pudding will be the latest blood test results hopefully I will have these next week. I also have a follow up with the Endo at the hospital its been over one year since I last saw them.

For one whole year, I have tried almost everything vitamins herbs the lot.

I will say that Bugleweed is over exaggerated of its healing properties. Personally I found did not work for me and in actual fact my symptoms got worse. I took tincture bugleweed for 2 months I could not tolerate it so I stopped. The good thing is my body has settled down I feel different than one year ago.

Do I trust the blood test results yes and no. I say this because I listen to my body as to how I feel. This is far more important than blood tests as these can be misleading. Of course each person is different, anti thyroid tablets may be the only option for many.

Anti thyroid tablets give me the creeps. The Endo's have much to do with this. The protocol is start at a higher end and taper down. Why not start at lower end first and see what happens, gradually increase the dosage as appropriately. This way many will avoid becoming hypo which defeats the objective from hyper to hypo there is no need for it. Endo's do not know how you are feeling are they listening or just dishing out tablets.

Back to me... until I have blood test results I really do not know where I am with my thyroid condition. The only thing right now is I feel better than one year ago.

Angel20 profile image

I went to see the new Endo doctor at hospital yesterday. A very nice person not pushy at all. He asked me how long I have had hyperthyroidism. We discussed my symptoms which are mild. We talked about my last blood test results with a TSH 0.01 no change there however the FT3 and FT4 a slight improvement.

This doctor suggested that my body had got used to Graves Disease and has not got any worse than 3 years ago, however, the plan is to have a thyroid scan, new blood tests and to see him in April 2020.

He stated that it was up to me whether I wanted to take Carbimazole or not, however he did stress that longer term my heart could suffer if I leave it untreated.

I put it to him, that generally the Endo doctors go crazy with higher dosage of Carbimazole making their patients from hyper to hypo. He did not dispute it. Actually he said there had been mistakes in the past he owned up to it.

How do I feel about my situation. First of all I am scared of taking carbimazole and right now my gut feeling is saying no and yet I have not totally dismissed Carbimazole.

The thing is as we know there is no cure for Graves Disease so basically Carbimazole is treating the symptoms, since I have mild Graves disease symptoms now for the past 3 years should I stay with L-carnitine vitamins etc ! I just don't know what to do. The side effects is a worrying factor for me, I don't have any other medical issues I am not taking any other medical tablets will I be introducing problems by taking Carbimazole.

I know from your posts many of you have done well on Carbimazole however I feel it depends how bad your symptoms were.

Taking into consideration that we must also go by how the patient is feeling this is so important far more than taking medication.

Another worry is this. I go away from end of May abroad and spend time there for min of 4 months as I have commitments. Starting Carbimazole requires monitoring, blood tests etc what I my gonna do get another Endo doctor there ! pfff

Appreciate your thoughts.

Thank you

Lora7again profile image
Lora7again in reply to Angel20

I have taken both Carbimazole (it gave me a rash so I stopped it) and PTU which suited me better. I only took it for a short time because my Endocrinologist did not monitor me properly and my TSH went to 9. You can read my story on my profile page. I haven't taken it for about 9 years now and I know I might have to take it in the future if my TSH becomes too suppressed and my T4 and T3 levels are too high. I would carry on like you are doing if you feel ok and your levels are not too high. Unfortunately I did have a thyroid storm last July as was admitted to hospital but things seem to have calmed down for now. I have just had a Medichecks blood test so I will be interested to see what my levels are now. I think Graves' is an unpredictable disease but what I do know is stress can make it worse because it has in my case.

Angel20 profile image
Angel20 in reply to Lora7again

Thank you Lora7again. I will read your story.

Marz profile image
Marz in reply to Angel20

I feel your post will be missed here so I would create a new post with your questions and concerns. More members will see it and respond. I happened to see it in the News Feed..

Angel20 profile image
Angel20 in reply to Marz

thank you, created a new post

Angel20 profile image

Bad news, I will not be attending the Ultasound scan nor the follow up with the Endo in April, the reason I am not prepared to put myself in danger with Coronavirus. I wish it was not like this but it is. Our whole lives have been disrupted people are not going out and feel that by exposing myself on a train journey and in hospital its a no no.

Only last night one of the well known hospitals in London was under lockdown as they have coronavirus cases.

What I did do is this, went to the doctors and picked up the prescription carbimazole 10mg. I discussed my issue with the GP and advised if I really get unwell to take a tablet. Right now I am on vitamins and L-carnitine. At least I have the tablets just in case.

Everything has been put on a back burner for now.

Vps1980 profile image

How did you all get diagnosed? Xx

PurpleNails profile image
PurpleNailsAdministrator in reply to Vps1980

If you are interested in stories of how people were diagnosed I would start your own new post.

You can also look through posters profiles, some include a ‘history’ on there.

You may also like...