Thyroid Eye Disease

[Pussikins]

Have suffered from Graves since January 2017. Underwent TT january 2018. Have severe TED and am totally at the end of my tether

[Keeleye]

I really feel for you, I am due to have TT tomorrow morning I am dreading the following months because of all the horror story’s about getting the medication right. I was diagnosed from my optician as my doctor told me I was fine for months.. I have graves & Ted, can I ask did your Ted get worse after TT? What are your plans now?

[pennyannie]

Hello Pussikins

I too have Graves Disease, diagnosed in 2003, I wasn't given any treatment option and treated with RAI in 2005. and been very unwell these past 4-5 years.

I'm sorry to read of your obvious distress with this disease, and know it can be totally debilitating and very difficult to understand and live with.

I too after RAI has some issues with my eyes, but was not considered " bad enough " for surgery on the Nhs. Have you been considered surgery, is this an option for you ?

Graves in as autoimmune disease and as such it's for life, it's in your blood and DNA.

There is probably a genetic predisposition, maybe a generation away from you, and the disease can be triggered by a sudden shock to the system, like a car accident or an unexpected death.

Living without a thyroid comes with it's own set of problems.

The thyroid was the victim of attack by your antibodies, and the victim, not the cause of your illness. The thyroid is a major gland responsible for full body synchronisation including your mental, physical, emotional, psychological and spiritual wellbeing, and when it goes hay wire, when under attack, from the Graves antibodies, the symptoms suffered can indeed be said to be life threatening.

The Nhs believe they can manage hypothyroidism better than they can hyperthyroidism. Since they have no knowledge on how to contain and control antibodies they seem to believe that by removing the thyroid, they remove the problem. Well this is slightly simplistic, in that removing the target of an attack doesn't actually solve the underlying problem of the auto immune disease.

It is essential that you are dosed and monitored on T3 and T4 blood tests and not just a TSH blood test which is just 1 of the 3 blood tests required to treat you properly.

If with TSI Graves antibodies, these sit on and control your TSH and can be giving you a false low TSH read, and your doctor maybe thinking you are over medicated when in fact, the opposite might be more the reality. A bit like a broken petrol gauge on a car dashboard, you know you need petrol, but the gauge is stuck on " full " ?

A fully function working thyroid would be supporting you daily, with approximately 100 T4 and 10 T3 . I just think it make sense that we replace like with like, and if you have had a medical intervention and your thyroid removed or ablated with RAI both these vital hormones should be on your prescription, for if and when.

Some people get by on T4 ( Levothyroxine ) alone, some people simply stop converting T4 to T3 at some point in time, and some people simple need both these essential hormones dosed and monitored independently to bring both T3 and T4 into balance and to a level of well being acceptable to the patient.

It is also essential that your vitamins and minerals are optimal as if ferritin, folate, B12 and vitamin D aren't good, any thyroid hormone replacement you maybe taking can be compromised and not work effectively.

In the first instance would suggest you ask your doctor for a full thyroid panel include T3 and T4 along with the vitamins and minerals as mentioned above. If he can't help you there are companies available, as detailed on this excellent website.

When with the results post back on here with the full results including the ranges and people better able than me will talk you through what, if anything, needs to be done next.

You might like to take a look at the following :-

Elaine Moore is a lady with Graves Disease and found no help in her recovery after RAI back in the late 1990's. So she wrote a book to help others, and now has a very well respected and researched website in the States, much like this excellent platform.

Medical protocol will be slightly different but the content is sound and an excellent learning tool.

Barbara S Lougheed, Tired Thyroid - there is a book and a blog : again another lady with Graves debunking, amongst other things the over reliance placed on TSH blood tests.

Last but by no means least, Your Thyroid and How To Keep It Heathy - written by a doctor who has himself, hypothyroidism. It is written in an easy to understand, sometimes funny, insightful way, and is everything we need to know to enable us to compensate for the fact that we haven't got a thyroid anymore.

I was refused a trial of T3 by my hospital last year because of my suppressed TSH.

I trialled T3 myself but have settled on self medicating with Natural Desiccated Thyroid.

I am a work in progress as I think we all are, as with time, our bodily needs need adjusting.

I am disappointed and disillusioned in my Nhs experiences and have found no help or understanding of Graves Disease.

I have been forced to become my own best advocate buying my own thyroid hormones, paying for my own blood tests, and getting better, with the help of this amazing website and reading and learning everything for myself and taking control of my own health.

[Pussikins in reply to pennyannie]

Many thanks for all your knowledge. You are very helpful. I DO appreciate it. Have read a lot on what Elaine Moore had to say i do not live in the UK ... i am sick and tired of this disease.

[pennyannie in reply to Pussikins]

Hey there, no worries, I do go on a bit, as I get quite emotional about it all.

The psychological impact of Graves just seems not to be acknowledged -

I remember having my eye brows tattooed when I lost my eyebrows,, and think maybe it should have read RAI to save all those stares, and doctors having deaf ears, but there again, they never look at patients, preferring to dose from their computers advice.

I think there is a kindle version of the book, so all 3 are possible, where are you in the world and what is the medical protocol of your country ?

[Pussikins in reply to pennyannie]

I live in malta. I just feel that now my thyroid is out medics dont really bother about how it has impacted me psychologically....as long as i am 'ok' then the rest is trivial......

[Pussikins in reply to Pussikins]

Also ..i KNEW that removing my thyroid was not going to give me back my normality as had researched a lot of stuff but after my TT (medication was not working) it transpired that i had papillary carcinoma. In that respect i guess its good that it was removed. I am presently.on 100 mcg levo but cannot seem to source NDT from here as from what i read it is much better. Its such a relief to hear how much knowledge you have and you give me hope. My aunt had hyperthyroidism herself 40 odd years ago so there's the gene. Her eyes are fine though...

[pennyannie in reply to Pussikins]

My NDT comes from Thailand ?

[Pussikins in reply to pennyannie]

can you kindly advise how to PM you please..

[Pussikins in reply to Pussikins]

Can you kindly advise how to PM you please ?

[pennyannie in reply to Pussikins]

You are so right, nobody considers the psychological aspects of this disease.

The medical profession do their bit, pushing you through a system to get you discharged back out into primary care as quickly as possible.

They aren't interested in " you " they have done the job they are paid to do.

We are left having to try and get on with the consequences of the treatment.

Do you have a doctor you can talk to ?

Can you get a referral to a specialist to discuss corrective eye surgery and a further referral to see a consultant to discuss your thyroid replacement hormones ? There is a T3 hormone replacement that many people take along with the T4. It is easier manage as you can adjust the ratio of T3 to T4 - whereas NDT is a fixed 1-4 ratio, which doesn't necessarily suit everybody, and some people add T3 to NDT and so on, and so on.

I still think there's some help to be offered - as said before post again with current thyroid and vitamin results and let's just take it one step at a time.

I would have liked support through all this, but failing professional medical help, this website has given me back so much more, and I feel more positive now I'm in control of my own health.

[Pussikins in reply to pennyannie]

You are like a breath of fresh air. I have spoken to 3 endocrinologists. The 3rd ( a wonan) seemed to empathise most but told me that my TED is now in the inactive stage and only orbital decompression might correct my eyes. I would need to have it done in the UK and its not cheap. With regards to T3 i have been informing myself on same lines as what you have kindly told me. Sometimes levo is not enough. The last time i got tested was october and doc wanted to raise my levo to 125mcg but when i did that my heart started to race. So was told to stick to 100mcg. My eyes...my weight....i feel and look like something the cat dragged in. Honestly!! Feel so fat and ugly. Yes i sound vain and fickle. It could always be worse. I just feel that Graves is really not given the understanding and importance it should have with medics...

[pennyannie in reply to Pussikins]

Yes, you right, Graves is poorly understood and badly managed.

that is why I spend a lo of tie on here trying to help others,' cause it helps me too.

I was good on125 T4 but my TSH was suppressed so I was dropped to 100 daily.

I now know we can't be managed on TSH alone blood tests, because of TSI antibodies. - 100 was too low for any real wellness, but my TSH would be in range, so considered " fine and OK " - go away or have some anti depressants !!!!

However 6.25 T3 + 100 T4 and I felt ok - and wish I'd stayed there but I thought I'd go up to 12.5 T3 and made myself very odd and strange for a week !!!

NDT is much smoother - there are some doctors prescribing both this and T3 -

is it worth trying to find one in Malta ?

NDT was the treatment of choice prior to the introduction of Levothyroxine and the blood tests and the TSH guidelines in the 1960's.

[Pussikins in reply to pennyannie]

When i asked for NDT i got these strange looks. I need to get a bloodtest and see how to forge forward...

[pennyannie in reply to Pussikins]

Yes, good idea, it's the first step to finding out if you blood levels are optimal, don't forget to check out ferritin, folate, B12 and vitamin D also as all these need to be optimal for any thyroid hormone supplements to work well.

It seems to me here in the UK if you can afford to go private and know who to go to, you will be prescribed T3 - however it is more affordable, to source the T3 yourself through Europe, and the NDT through Thailand, and follow dosing instructions on this amazing website.

The system is broken and unfair, it's a post code lottery and all due to the cost of NHS medication. A T3 prescription in the UK is about £230 compared to the same brand and quantity in Europe costing but about a few euros. Or so I read.

Can you import from Thailand for the NDT ? Or find a " really old " doctor or an enlightened individual happy to look outside the tick box exercise they have been indoctrinated with at medical school ?

[Pussikins in reply to pennyannie]

Well the problem might be customs here. Do you get your NDT on prescription? Last night was following Dr Westin Childs..interesting...

[pennyannie in reply to Pussikins]

No, I buy from Thailand and it's costing me about £60 a year. I only seem to need 1+1/2 tablets, which I think is quite little reading of other's experience with dosage.

I think if I purchased NDT privately I'd be looking at similar price to the T3 which I can't afford to maintain long term.

I guess initially it's possible to get started privately, and have someone to lean on and set you up, so to speak, and then when confident in the medication and dosage source it yourself at the more affordable price.

Yes, I've heard of this man, and read a couple of posts on here about him. Can't remember much as I'm very happy where I am, doing what I'm doing at present, and have no intention of rocking my little boat, in case I capsize !!!

Basically loosing your thyroid through medical intervention and being medicated solely on T4 is basically being down regulated by about 20% . T3 is very different from T4, they are two very different hormones and I just think, if we can, we should replace like for like, and attempt to balance both these vital hormones to a level of well being that gives the patient back their life.

[Pussikins in reply to pennyannie]

I really would like to thank you for giving me so much of your time. Do you suffer from TED or did.you manage to overcome it?

[pennyannie in reply to Pussikins]

Fortunately my thyroid eye disease symptoms seem to have settled down.

The face looking at me in the mirror, has changed, and isn't the me I was once.

I went from contact lens to glasses and then to very dark RNIB sunglasses.

I'm now accepting of my face and am not hiding behind any glasses any more, unless obviously I need them visually, similarly with sun glasses.

I was very lucky, it could have been so much worse. I did ask about corrective surgery but got bumped off, worn down and gave up - it was all too distressing.

it isn't a problem, helping you, helps me, so no worries.

[Pussikins in reply to pennyannie]

You really are amazing i cannot thank you enough. Its so encouraging for me x

[pennyannie in reply to Pussikins]

You are just as amazing, coming on here and opening up is so brave of you.

I'm happy you have felt comfortable talking with me.

Two years ago, no even a year ago, I couldn't be doing any of this, I was so unwell.

There is help, it doesn't need to be how it is right now, take care, and keep us posted, you will be helped.

[Pussikins in reply to pennyannie]

Many many thanks. Even if nothing happens with my health issues, the mere fact that you heard me out and encouraged me and listened and gave me your wealth of knowledge has done me a world of good. I am indebted to you xxx

[pennyannie in reply to Pussikins]

And I too am indebted to this amazing website and a platform where we can all share and learn more from each other about ourselves and our health issues.

It's a lot to take in, there is much to read and reread and understand, it's not easy when with hypothyroidism and probably that " darned brain fog " tripping you up.

Take good care xxx

[Pussikins in reply to pennyannie]

I will. Thank you once again my dear x

[Greekchick in reply to Pussikins]

Hi there, please check this link - there is a new drug which is showing good results for TED :

gdatf.org/news/top-line-tep...

It should reach market in the near future - hopefully in time for many with TED. All the best to you and hoping you feel better.

[Pussikins in reply to Greekchick]

Many thanks. Yes read about this and researched but was told am not a candidate as i have had TT.

[Greekchick in reply to Pussikins]

Got it. Wishing you all the best.

[Pussikins in reply to pennyannie]

Damn. Just realised i thought i was replying to you but i was just replying to myself!! Lemme try to forward my replies to you x

[pennyannie in reply to Pussikins]

I've done that more than once !!!

[Pussikins in reply to pennyannie]

Lol

[Pussikins in reply to pennyannie]

I had bought elaine Moore's The Thyroid Eye Disease book....i will look into the others you are recommending. I am not succeeding in forwarding my replies to you from my fone. Will try from my pc

[pennyannie in reply to Pussikins]

Hey there, no problems,

I didn't know Elaine Moore wrote more than the one book I found entitled :-

Graves Disease - A Practical Guide - I believe her website is a mirror image of some chapters of the book, which can be hard going in places, especially if you have had RAI, the long term implications of which can be difficult to read about.

[Pussikins in reply to pennyannie]

No i didnt do RAI cos i was told my eyes would worsen. I had my thyroid removed instead

[pennyannie in reply to Pussikins]

Yes, I know that, and I had RAI and told nothing !!!!

[Dripdry in reply to pennyannie]

Thank you for your informative and extremely helpful comments

[amypinga]

Selenium is supposed to help with TED, so maybe try eating some Brazil nuts. It won’t cure it but it could help (there have been clinical studies about selenium for thyroid eye disease).

Sorry that you are going through this.

[Pussikins in reply to amypinga]

Thanks for empathising. Feel so depressed and its all so overwhelming but this site seems great!!

[Pussikins in reply to amypinga]

Have been on selenium for a good 2 years but cant say it helped x