For Graves and hyperthyroid people: As... - Thyroid UK

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For Graves and hyperthyroid people

editfmrt profile image
23 Replies

As hypothyroidism is so much more common and therefore frequently discussed on this site, I thought this might be helpful for the hyper people

amongst us:

naturalendocrinesolutions.c...

The writer is diagnosed with Graves so hopefully has an insight into this condition.

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editfmrt profile image
editfmrt
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23 Replies

Be very interesting to hear from anyone who has followed his ideas. :-)

He seems pretty sane! ;-)

Might ask for a review copy of his book....!

Thanks Edit.

Louise

x :-)

marram profile image
marram

It looks really interesting. When I was first diagnosed (in 1958) there was no internet, and although there might have been a few natural practitioners it would have been difficult to find them.

Even the second time (in the early 80's) it was not particularly easy to find information (especially when sent to a mental hospital as I was!)

What a blessing the internet is. Perhaps I might have chosen another route - hard to say if I would have been capable of doing so, since I was having hallucinations, paranoia and the beginnings of thyroid storm. It all came on so suddenly and dramatically, I am not sure if it would even have been an option.

Even the writer admits some thyroids are too compromised.

editfmrt profile image
editfmrt in reply to marram

Yes Marram - the internet was in its infancy when I was diagnosed with Graves. So sorry to hear you ended up being treated for a mental condition. I managed to escape that despite being wrongly accused of having a drink problem and depression and anxiety - just because they failed to look for any clinical reasons.

The whole body trembling was nothing to do with alcohol. I couldn't touch a drop as it made me so ill but the GP was obsessed and ignored all the classic and very obvious signs of Graves.

I agree with you strongly that hyperthyroidism gets to a point where natural help is not an option. Even knowing what I know now, this would not have been suitable for me. However, I do think some nutritional support with the conventional treatment would have helped me to recover more quickly as I was suffering from malnutrition after being misdiagnosed for so long.

marram profile image
marram in reply to editfmrt

What a sad indictment of the medical profession that they think of mental problems and alcohol abuse before endocrine problems. Thyroid patients must be the most misjudged and - what can I say - abused? patients in this world.

editfmrt profile image
editfmrt in reply to marram

I couldn't agree more marram. My heart aches at the stories I read on this site and of course yours which is similar to my sisters with Hashimoto's. She even suffered electric shock treatment and that mental health label, despite all the evidence to the contrary, just does not go away.

I believe that one day (not in my lifetime) the way thyroid conditions are treated now will be reported on in much the same way as we read about how people were locked away in asylums and put in straight jackets.

Not much has changed really - it's just that they don't lock us up any more and just use inappropriate medication as the modern day equivalent of straight jackets. This must sound dramatic to those that have not experienced it - sadly it is true.

Anioveractive profile image
Anioveractive

Thanks for this link, it does seem that everyone I speak to say they know someone with a thyroid problem and all of them have under active not graves so you can feel a bit lonely. I was only diagnosed last month and on carbomazol which has greatly reduced my symptoms. It is only now that I feel almost normal that I realise how ill I was! I'd be very pleased to hear from other graves sufferers on what to expect after the block drugs I hear you move to under active then drugs to get you back to normal is this right?

editfmrt profile image
editfmrt in reply to Anioveractive

So glad to hear you are feeling so much better. I too didn't realise how ill I was - which is ludicrous given the complete physical mess I was in. I think denial is a symptom of hyperthyroidism - it was for me anyway. I had an insatiable desire to keep going no matter what - all the while my family were horrified at my decline.

The block and replace you talk about is what you describe - anti- thyroid drugs (usually carbimazole) to knock out the thyroid completely (making you hypothyroid) with thyroxine added to replace the thyroid hormone. I believe (but am not medically qualified) they usually try that for a period and then take you off the drugs for a while to see if the Graves goes into remission. It seems to work for some and for others they become hyperthyroid again and then other options are considered.

thyroidhelp.org/forums/show...

webhome.idirect.com/~wolfno...

kashmash profile image
kashmash

This article is fascinating thank you so much editfmrt. I have read it with growing wonder, having just been diagnosed with Graves my self, and am just in the first stages of the treatment. I am on a large does of carbimazole but no beta blockers as I am asthmatic and use inhalers. I am generally quite happy with both my GP and my Endo, both of whom were on the case on the first appointment I had. but this natural remedy is certainly something to be aware of. I will be using some of the supplements, but will continue to use the drugs prescribed. The biggest news for me was that there is no cure only a suppression of the symptoms....I have generally tidied up my lifestyle no drinking at all and have stopped smoking, next stop sweets and chocolate..!!!!

editfmrt profile image
editfmrt in reply to kashmash

Hi Kashmash - so glad to hear you have a good team and things are going well for you. I wholeheartedly agree with you that supplements should be complimentary and that conventional treatment must not be ignored for Graves. I wish I had known about supporting my treatment to get me on the road to recovery sooner. I believe many of my symptoms were actually due to severe vitamin and mineral deficiencies from the massive weight loss (dropped to less than 6 stone) and muscle wasting. This happened despite me eating enormous quantities of food, including sweets, chocolates and crisps. I was a smoker too and to my shame continued until about 4 years ago!

editfmrt profile image
editfmrt in reply to kashmash

I meant to say kashmash - I was diagnosed with asthma.

It miraculously 'cured' itself once my condition stabilised.

I now use my degree of breathlessness as a marker for adjusting my dose of thyroxine - I'm now hypo after RAI.

I have learned through my journey that for me both hyper and hypo cause me symptoms of asthma. I'm a musician (brass player) and therefore very aware of any changes because of the number of bars I can play before I have to breathe!

Recently, the breathlessness returned. I increased my thyroxine just by 25 mcg and yet again the problem has been sorted.

I'm not saying you don't have asthma as I'm not medically qualified - just it might be a thought.

Sam75 profile image
Sam75

Oohh...dont deprive yourself of everything, its hard enough coping with this rotten desease so dont cut out all your comforts at once.....anyway a good plain choc is good for the heart, and also a small glass of red wine occasionaly....Good luck .

helvella profile image
helvellaAdministratorThyroid UK

There's plenty of plants which can affect the thyroid. Sometimes dramatically. This is a really extreme example which serves to emphasise the need to work with someone:

nejm.org/doi/full/10.1056/N...

Rod

editfmrt profile image
editfmrt in reply to helvella

You are so right Rod and thanks for making the point - I realised after I posted that the intention was not to mislead anyone into thinking they could use natural methods alone.

As much as I deride the medical community for their knowledge and treatment of thyroid conditions, my personal view is that Graves is far too serious/acute to be mucked about with and that medical support with conventional treatment is vital. I do wonder though if things like block and replace or anti thyroid drugs have a better chance of success if good nutrition and optimal levels of vitamins and minerals are taken into account.

helvella profile image
helvellaAdministratorThyroid UK in reply to editfmrt

I always feel very ignorant of Graves. While appreciating that it must feel pretty bad, and that many sufferers get their second whammy in the form of hypothyroidism, I am very pleased not to have gone through that myself!

I really don't think that the article implied go it alone! The chap was *very* careful in his writing to emphasise that.

I am also concerned that some people might think they have Graves when they are going through a hyper phase of Hashimoto's, or actually have a nodule, or whatever else. Sure enough, they all need the high levels of thyroid hormone to be managed, but beyond that there are differences. The medical establishment does not seem very keen to perform antibody tests for TSI.

editfmrt profile image
editfmrt in reply to helvella

I have often thought the same Rod about the hyper phase of Hashimotos and wonder how many people are misdiagnosed just because they have been tested "at the wrong time".

My case was very clear cut and extreme at both ends of the spectrum;

Undiagnosed until taken into hospital with thyroid storm and then badly managed follow up after RAI so I was rushed in with hypothermia - which I now know was myxedema coma!

At least it was clear cut for me but I feel very sorry for those on the journey of swinging backwards and forwards between the two.

kashka profile image
kashka

Although i was first diagnosed and treated on a block and replace treatment .I have now been in remission from Graves for 16 months after coming off the treatment and still feel very good.But was interested to read these articles about natural methods and differant treatment options rather than going down the RAI route if it should cause me further problems in the future,Thankyou for this .

editfmrt profile image
editfmrt in reply to kashka

Hi Kashka - it's so good to hear you are in remission. I wasn't given the option of block and replace just carbimazole and after a year of this not working, RAI.

This was right for me at the time but had I known more then I would have used vitamin and minerals to support my conventional treatment before agreeing to RAI.

All the best for the future and wishing you a lifelong remission x

kashka profile image
kashka in reply to editfmrt

Thats such a shame you werent given any other options.The endo has told me if it returns i will have to have RAI or a thyroidectomy.Which i have always said i will refuse.I really hope i stay in remission.Thankyou . All the best with your health too.x

greenginger profile image
greenginger

I have Graves and was diagnosed as hyper back in May 2011. Still on carbimazole but not for much longer.

I keep seeing articles of this nature about natural "cures" for Graves. Far be it for me to knock other people's needs to believe that one exists but to be honest I don't believe that by taking a few herbs or eating healthier or whatever will do the trick.

I know that some on here have professed to have had success but most of us here in the UK do not have personal dieticians or herbalists nor do we have great knowledge of such. Therefore I do think that it is easy to get sucked into all this in the same way that a lot of us have been sucked into fad diets over the years.

I do hope that anyone interested in the article will get something from it even if it is just hope however at the same time I see too many hypers on here refusing real medication in the mistaken belief that they can cure themselves.

editfmrt profile image
editfmrt in reply to greenginger

I 100% agree with you greenginger. I don't believe Graves can be cured in this way and it could be dangerous to think conventional treatment can be ignored. On reflection, I should have made that clear in my post. However, the writer does state that some thyroids are just too compromised for natural treatment. Thank you for making that point.

I do believe though, that the devastating effects of malnutrition that I suffered could have been improved with good vitamin and mineral supplementation. I now know that many of my symptoms can be explained by severe deficiencies, but I was too ill and disabled to know that at the time. I think it is unfortunate that conventional medicine often ignores this aspect of the treatment because true vitamin deficiency has devastating effects.

So to re-iterate, I would view nutritional support as complimentary, and certainly not instead of conventional treatment.

sorrel89 profile image
sorrel89

Very useful...thanks for sharing

auldreekie profile image
auldreekie

Correct me if wrong most (all?) thyroid autoimmune disease suffers have hashimotos and graves antibodies, comprising blocking, binding and stimulating antibodies, these are in a state of flux and it depends on which are are dominant whether someone in in hyper phase or hypo phase...

I believe I would have missed the hyper stage as I had no symptoms but moved house and had blood tests at new gp and suddenlty I had Graves disease!

kashmash profile image
kashmash

Hi Sam I promise I am not depriving my self of everything.....I still love my chocolate much more I should, I could kill a fag right now!!! Only stopped as my Endo said would help.....don't they always. Editfmrt...I have been asthmatic since I was a child....so not as a result of the Graves or thyroid....

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