I'm new here. I've had Graves Disease and Thyroid Eye Disease for 18 years. I belong to The British Thyroid Foundation and TEDct.

[NessaClare]

I completed a really good online programme called Learning to Live with a Life Long Illness.

Acceptance day by day has helped along with a sense of Gratitude that my health could be worse..

There are hospitals across the UK with Centres of Excellence for Thyroid disorders within them. I am now under Moorfields Hospital for my TED and Hammersmith Hospital for my Thyroid Graves Disease.

I believe I deserve the very best care that the NHS can offer and I feel very well cared for now.

We are aĺl wonderfully Unique people who share similar experienced. Is good to be sharing the Journey with You.

[jimh111]

Good to hear you are getting good care. Although we find the BTF are not much help for hypothyroidism I believe they are good at Graves' and TED, you probably know their founder has Graves'. The TECct seem to do a good job too and I know how good Moorfields is. I get the impression your thyroid health is good? Many people who have had Graves' become hypothyroid and find their treatment is suboptimal to say the least, you will find examples on this forum. So, if you should have problems getting your thyroid hormone levels right I'm sure you can get some advice here.

[shaws Administrator]

We may have hospitals of excellence but not if one is hypothyroid.

I am glad you are being treated with care and kindness but that is not what the majority on this forum have found.

Hypothyroidism is poorly detected with all of the emphasis on a blood test rather than disabling symptoms - that is if you ever get one. I didn't and it took forever to be diagnosed but I was given plenty of other 'diagnosis' except the real one. Oh and I also got treatment which I didn't need for things I didn't have.

Finally - I diagnosed myself and TSH was 100 by then, having been discharged after an overnight stay in the A&E as 'probably viral with a high cholesterol' two days previously. I diagnosed myself by demanding a blood test from GP as it was suggested to me by a First Aider.

It is also poorly treated with doctors refusing to increase hormones despite disabling symptoms.

So, the majority on this forum are disappointed with their GPs and the BT Foundation and the BTA as doctors have to toe the line in how we are diagnosed, i.e. TSH has to reach 10, whereas in other countries it is when it reaches 3+ with clinical symptoms.

Also their insistence that levothyroxine alone is a 'perfect' replacement which makes me far more unwell than before my diagnosis. I was in an Ambulance more often than I ever was after I got hypothyroidism due to levothyroxine not agreeing with my body.

I am fit and well now but the thyroid hormone which does that has now been withdrawn from all Patients who were prescribed it either as a T4/T3 combination or T3 alone. Panic was the response of patients who were well on T3 and they were given no notice of its withdrawal.

Also the BTA etc have made False Statements about the very original thyroid hormone replacement, first introduced in 1892 which saved people from a horrible death. Now we have some who have wanted to committ suicide and one who was successful and left a note for the coroner as to why she took that step.

Natural Dessicated Thyroid Hormones were the very original replacement and was prescribed in the UK until it was withdrawn and False Statements made about it by the BTA and despite one of our Advisers sending them a Rebuttal and requesting a response every year for three years they never did respond. So, as you will realise we now do not have options and forced to source our own medications which some can ill aford.

thyroidscience.com/Criticis...

Moorfields is a place of par excellence and cannot be faulted in their doctors or treatment.

I am glad you are well and that is the aim of this forum, to help those who are not helped/assisted by theiir doctors/endocrinologists.

[shaws Administrator]

p.s. I am really pleased you've recovered and I just wanted to say that the House of Lords held a debate a few weeks ago regarding the withdrawal/cost of liothyronine. It was from 3 .p.m. to after 8 p.m. and many lords were present.

healthunlocked.com/thyroidu...

[Yellowhorse]

Hi, I have had the same diagnosises as you.

I also go to Moorfields, the TED is sorted but I remain there for glaucoma.

Shaws, I had RAI for my graves so am hypo now.

I endured a very arduous, long battle to recover health after that, but finally found a consultant who prescribed Liothyronine. I am most fortunate that he has allowed me to keep taking it, on the NHS too.

I hope everyone can find a similarity good consultant, sadly mine is not taking new patients on.

[NessaClare in reply to Yellowhorse]

Hi Yeĺlowhorse

I found out recently that RAI can make TED worse. Glad you're under Moorfields. I've been in a position over past 18 years to refuse RAI and Surgery I've been on carbimazole . Now I've developed a small goitre and increased to 20mg carbimazole. surgery has been suggested to remove my Thyroid. I feel very unsure about that

[Yellowhorse in reply to NessaClare]

Hi Nessa,

I was unable to stay on carbimazole, as my levels would never stabilise so I was at high risk of thyroid storm. The RAI seemed the easiest option to stabilise things, but as you know, that isn’t actually what happens!

If you have no thyroid, getting the meds right is “meant” to be easier but it’s not. I’m not sure if that would reduce the chances of Ted, but the TEd support group are fantastic so they would likely be the ones with more knowledge and experience, if you haven’t already spoken with them.

[helvella Administrator Thyroid UK]

First, pleased that you have received good treatment and appear to be doing well.

However, where you say "hospitals across the UK with Centres of Excellence for Thyroid disorders within them" highlights a major issue. The majority of hypothyroid patients never get a referral. Hypothyroidism is most often treated as a primary care disorder and supposedly managed by GPs.

I guess my local hospital could have such a centre of excellence, but I'd never find out.

Is there a simple way of finding out where the centres of excellence for thyroid are? Maybe some digging would find them, but a nice simple web page which lists them would be very helpful.

[Zephyrbear in reply to helvella]

Sadly, even when you do manage to get an endocrinology referral, you may still end up with one whose speciality is diabetes and who may not know much about the thyroid at all! I had a very good endo who put me on T3, but who then sadly retired and his replacement🤡 is about as much use as a fart in a bottle... Knows plenty about diabetes, even requested a diabetic treatment monitoring test for my next appointment, but sweet FA about the thyroid! 😡

[mumellis in reply to Zephyrbear]

Hear hear, the endo I saw some time ago spent 15 of a 20 minute consult trying to find on Google info as to how he would be struck off if he prescribed anything different to Thyroxine. I hadn't even asked for anything different! Just was I still on right dose. Needless to say I haven't bothered him again. Shame that we moved here to Kent, as I was being adequately looked after by My GPs and endo in S. Wales

[NessaClare in reply to Zephyrbear]

Hi Zephyrbear sadly most hypo patients only a week by GP. I found out about centre of excellence at Hammermith from my orthodontist. a coincidence he is friends with good Endocrinologist. I said to my GP I want to exercise my patient choice and be referred to the Endocrine team at Hammersmith. Not all GP's or Endocrinologist know enough about auto immune and thyroid disorders that's for sure

[Zephyrbear in reply to NessaClare]

I live in Mid-Wales, so Hammersmith is a non-starter for me... I'm glad you've found somewhere good, but for those of us out in the sticks beyond London, the choice is non-existent! I had a brilliant endo, but he, very sadly, retired and I'm left with a specimen that's about as much use in the field of thyroid conditions as t*ts to a bull!

[pennyannie]

I believe we all deserve the same level of care that you appear to have received.

Unfortunately, this is not the case for many, hence the need for this forum.

I am happy for you and hope your well being continues and you find the help and advice we all seek available to you within the NHS. Yes, " centres of excellence for thyroid " -

please advise where I find this information as I'd like to join the queue.

[Hidden]

I remember sat in the waiting room of Southampton eye hospital feeling sorry for my own plight I had just had a detached retina mended. In came a guy in a wheelchair with no legs, all of a sudden I felt much better and came around to thinking that my life wasn't too bad after all.

We all have problems it's how we deal with them. Good Luck you are in good hands at Moorfields.