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Thyroid UK
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Letter from Endo to GP I wasn’t meant to see

Hi

Last year I had a terrible time. It’s a very long story of collapsing many times, being in hospital 3 times and being pushed from pillar to post.

Yesterday I came across a letter from my NHS Endocrinologist, whom I saw only once in this year. It was sent from him to my GP. The opening sentence said ‘I am writing to you separately to the patient’. In this letter he said he would not be endorsing T3 for me as it was clear I did not need it as it would only confirm that there is a medical requirement when in his opinion I need psychological help!! And was planting this seed in my GP’s mind.

Shortly after this letter was dictated my private only Prof Endocrinologist wrote to my GP confirming I wasn’t converting T4 to T3 and to prescribe me T3. I later got the T3 privately and my life was brought back. Now I can walk 10 miles instead of 10 steps. And a whole host of other benefits.

I found this letter on my Patient Access NHS site where all documents are scanned on. I am shocked and couldn’t believe what I was reading. And thought, oh my good god, Imagine what may have happened to me if the NHS Endocrinologist had convinced my GP and I had not have found a good private Endocrinologist whom is widely respected in the UK.

It must be to do with T3 costings and pushing people into areas where they wouldn’t be able to be believed. It’s shocked me to the core. I had a brilliant job as a manger for Rolls-Royce and worked all my life. I’ve never had to have support like last year from the NHS, or in my case no real support. I can only thank my GP for standing by me throughout.

Thankfully now on T3 with magnificent improvements my life is back on track. Some minor tweaks with T3 and Levothyroxine but that was to be expected I guess.

I’m thinking of the people this sort of Endo letter could harm. It can’t just be me. People trying to get better and being knocked back constantly or sent down a rabbit hole with a mental:psychological label without knowledge. Very scary.

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Did you mean to write "psychological"help?You can edit your post.

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Duurrhhh. Spelt correctly now 👍😀

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Its so good to hear how well you are doing now,but truly shocking to hear how you were treated by the NHS endo.Unfortunately,your story is not uncommon on this forum.

How many people are there who end up believing they need anti-depressants,when they need T3,or cannot afford to pay for private medical support or supplies.

It is unfortunate that some people trust their NHS consultants,believing they must be right.

This forum has saved the health of so many.

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You are so right. The whole thing surrounding T3 or thyroid conditions is quite unbelievable how badly many people are treated.

When I was first diagnosed 12 years ago I had to go back to GP’s 5 times. They kept turning me away saying I needed antidepressants. I kept saying I think i have a thyroid issue. On the 5th time they did my bloods. My TSH was 39 (0.36-5.56).

Still now the NHS is saying similar things. What is the matter with NHS so called Endocrinologists. I think in my case it maybe to do with me pushing and asking questions. Questions that I’ve learnt to ask from this site. They just don’t like being challenged in any way.

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sadly far too common.....many people who have poor conversion of FT4 to FT3 get labelled with "mental health issue " often by diabetic specialist endocrinologist who knows little about thyroid.

An endocrinologist is not actually qualified to diagnose a mental health issue either

I had see psychologist - who gave glowing report and said I was coping remarkably well with obvious severe physical immobility (in wheelchair) before I was "allowed" referral to my 2nd opinion NHS endocrinologist 20 years ago (still see same endocrinologist, but now private only)

Like you, the addition of small dose of T3 was nothing short of completely miraculous.

Hopefully your GP, seeing such dramatic improvements in your health, will help spread the word on looking at prescribing addition of T3, if patients remain unwell on Levothyroxine alone

Did you get DIO2 gene test?

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Well said Slowdragon. I’m sorry you had to go through a mental health assessment some years back. How awful this all is. Some poor people will be stuck it that place with possible severe weakness issues. People in nursing homes and mental health assessment centres too. It makes me very sad and frightened for them.

I spoke to my private Endocrinologist in Oxford regarding the D102 test he said not to bother?! But I think I want it done anyway just so that I know one way or the other. I’m convinced my mum, who died of ovarian cancer at the age of 64, had undiagnosed thyroid condition. My sister had thyroid cancer. Her T3 is very low too. NHS won’t help her either. She really struggles.

Would it be possible for you to send me the link again please for the D102 test.

Thanks again Slowdragon without you and this marvellous forum I don’t know what would have happened to me.

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I agree there must be many people who simply believe the medics, who don't have the strength to stand up and fight the system

I am fairly convinced my mother's last years of poor health and "dementia" were due to low vitamins (especially low B12) gluten intolerance and very likely Hashimoto's. Like thousands her "treatment" was antidepressants.

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If I were you, I'd make a copy of that letter, and complain to that endos superiors. He should not be allowed to get away with such unprofessional behaviour. As SlowDragon said, he is not qualified to make such assessments.

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I agree. I really am taken aback. I’m also in the process now of my GP applying for funding for my T3 on the NHS. I did say to my GP that I thought an Endo had to endorse it. GP said not to worry he’s going to put it through. So with this funding application going on I think i May have to wait until if or when I get it. What do you think? I do trust your judgement.

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Yes, you could be right. Not the right time to rock the boat! But, he shouldn't be allowed to get away with it. Thank goodness for your excellent GP!

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Yes he has been good. Not very knowledgeable on Thyroid and he told me that then asked me to explain what T4 to T3 conversion is. He was all ears and congratulated me on my tenacity and how well I now look. I think he has learnt from my situation too.

I want to throw that Endocrinologist out of the boat never mind rock it. Sadly I now know how the NHS operate and any whistle blowing or rocking of boats could effect my treatment going forward. It’s not right and it’s frustrating.

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I found that having Heterozygous DIO2 gene test result was helpful in getting NHS to agree to fund T3 prescription

My own CCG area is now same as my endo. So was slightly easier, plus my GP extremely supportive.

DIO2 gene test

thyroiduk.org.uk/tuk/testin...

Perhaps you should persuade your sister to get full Thyroid and vitamin testing and see same endocrinologist ......especially if you turn out to be DIO2 positive

I wouldn't rock the boat complaining about NHS endocrinologist unless your T3 funding is turned down

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Yes I agree. I’m going to do the test. I’ve just sent you a message about it.

My sister won’t go private unfortunately. She believes everything her NHS says. Although she’s not well and struggles with energy constantly. We did book an appointment privately then she cancelled it. I was disappointed.

Maybe if the gene test comes back positive she might think again. My worry is that it might not be positive. How would that go down when trying to get funding for T3. Do you know? Private Endo said it prob would be genetic though.

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I’ve sent of for the Di02 gene test.

Thank yo!

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I also have an appointment with him this Thursday. I don’t know how to handle it. He didn’t believe I needed T3 now I’m living proof I’m better with T3.

I want to say something about it but I feel as though I need to keep calm and be professional, as he should have been, and keep my head held high with dignity.

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Yes, you do need to. Especially if you're going to complain about him. Don't give him any hint that you're going to do that. Forewarned is forearmed, you know, and you don't want to give him any weapons for his defence arsenal.

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I’ll keep quiet about it. I have a printed copy now. I’ll see how my appointment goes and what he says. He might just be surprised that the T3 worked. I doubt he’d eat humble pie though. Thanks Greygoose.

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You're welcome. :) And good luck.

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Can you take along supportive friend or family member (as witness to meeting) they don't have to say anything....though they might wish too.....

Recommend a short list of dramatic improvements in quality of life

Eg previously could walk 100 meters. Now can walk 5 miles

Try to keep it factual and not say too much

Guessing your TSH is suppressed?

He will try to argue that suppressed TSH is damaging for your long term health

Indepth research into T3/NDT - very positive

ncbi.nlm.nih.gov/pmc/articl...

Obviously it's largely about the cost. NHS endocrinologist are pressurised not to prescribe

Government need to take action to force price down

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Thank you. I’m putting my positive list together. My TSH is suppressed but not out of range 0.69 (0.35- 5.56)

Energy - wheel chair now walking 10 miles.

Cortisol has doubled- strength back.

Eye sight - no more blurring or double vision

Migraines - not had one.

Weight - decreased by 10lbs in 10 weeks.

Libido- has returned after 10 years being non existent.

Skin - no more dry skin or hard painful lumps on face.

Mood - has lifted. I feel normal.

GP - no more calls or appointments since T3 started.

Hospital- no more ambulances from collapsing.

It’s all quite remarkable.

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That TSH is not suppressed.

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Sorry I meant from what it was, which was 29 this time last year.

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Wow.

That's horrible. It's great you became aware of the letter. Hopefully one day he will be held to account and, we can hope, educated about his error in clinical judgment and lack of professionalism. Good advice from SlowDragon and greygoose. I wonder though, does your GP's application for NHS funding for your T3 consist only of his recommendation? Or does it include a letter from your private endo? Or is it your entire medical record? Just wondering if the CCG would see this letter, which could be used as a basis to deny the application. Otherwise, makes sense hold off rocking, if not capsizing, the boat for now.

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Hi. Welcome home!!

I’m not sure what the CCG sees. I’m not that hopeful I’ll get T3 on NHS. I’m going to keep pushing though. It’s all I know now with the NHS the past year. Without this forum and people like yourself I think I might well be dead without being too dramatic. Many years ago people did eventually die of thyroid disease I’m sure. Gosh what a horrible death that must be. I keep going from being calm to wanting report this Endocrinologist. How very dare he. I know I can’t as I’m afraid of the fallout. I’m a great believer in what goes round come round. The first line to my GP reads...

“I thought I’d write to you separately, I do normally copy in patients into consultations, but I am very concerned that we are pursuing non medical symptoms with multiple investigations on this lady. Then goes on saying....

I am very reluctant to consider a T3 trial on this lady as I think it will further reinforce the issue that there is a medical solution to her problems. I can see no gain in offering her a volatile drug which requires twice daily dosing to try and resolve symptoms that do not match with hypothyroidism in anyway. I do wonder if you have considered broaching the subject with her for psychological assessment”

There was more that made me outraged too And I had to read the letter a few times before it would sink in.

I’m in the calm place again now.

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The number of times they witter on about how complicated T3 is because some of us need to take it 2 or 3 times a day.... it's utter b****t

It's a darn site more inconvenient to have no life on just Levothyroxine

Do they deny diabetics insulin because they need to take it before each meal, rather than once a day

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Well said. I thought exactly the same thing. I’d rather take T3 2/3 times a day than be in a wheel chair feeling like death and slowly dying.

They are either stupid or completely uncaring.

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I continue to be shocked by your story (and so many others) of the willingness to ignore overt and sometimes extreme symptoms that are obviously medical in nature, requiring a medical solution. Thankfully you got yourself the treatment you need and also have a supportive GP. Should you be successful in obtaining funding for T3, let us know. We shall all cheer for you.

Be in that calm place. :)

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Thank you for your supportive words, they mean a lot to me. I wasn’t going to post what the NHS Endo wrote at first. I’m so glad I did. All the support has really helped me. X

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I feel that there must be many people in the UK, who've remained undiagnosed and untreated due to incapable doctors/endocrinologists. We are apt to be given any other prescription under the sun, rather than a decent thyroid hormone that works for us. Many on this forum cannot recover on levothyroxine.

How many have been told they have a mental health problem instead of testing our Free T4 and Free T4 and ignoring the TSH result.

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It’s really appalling. I never thought I’d end up in this situation.

It haunts me that so many will have been deemed mentally ill when they wasn’t. They just needed T3 and proper help like in most other countries in the world.

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I had a one day heart monitor and then it was followed by a 'seven-day heart monitor in February. Despite phoning GP - 'nothing yet on computer' going into the Halter Cardio Dept, phoning cardio dept. I have had no answer or response.

I have also had to wait six months for an appointment to see a Specialist in another area. It is clear the NHS is struggling.

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Definitely clear. I’m sorry you’ve had to wait so long. When it’s your health you cannot help but think about it. Quick responses and answers would definitely help individuals.

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That is a rubber stamp you managed to unstick. So many people are still struggling to have t3 added to their prescriptions and are poorly. When the medical fraternity decide you are off the list - it is difficult to answer back - we are pawns!

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It’s so very scary. Before all this happened to me I use to think of the NHS as a good thing. My partner and I use to talk about moving to another country in our retirement years. I’d always say oh what about our health we have the NHS in the UK. Now I say when are we leaving we’d be better treated anywhere else. I have 4 family members that have been treated so badly by the NHS. So it’s not just me. It’s the many on here too. Thank the lord for this forum.

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It is pot luck - some areas are better than others. My dad lived in TW Kent which had the top hospital in the country for tests and treatment. He had private treatment and NHS and lived until his mid 90's but he had some poor treatment and care as well as good. People we know lived France and came home as NHS was better - the grass is always greener.

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Some years ago I was in hospital and the General Surgeon came to see me, complete with a retinue of trainee doctors. He told me it was "all in my head". I asked if he could read, as my notes clearly showed a scan showing my kidney had tumours. The trainee doctors all walked away as he started berating me for "being aggressive". I then told him he had diagnosed my then 14 year old daughter as "nerves" and I took her to another hospital where she was diagnosed with Sarcoidosis within hours. I told him he was a liability and should retire before he killed someone. It did not go down well, but I did put in a formal complaint. I just hope it stopped him diagnosing someone else as "all in her head" for a while.

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Good for you is what I say. More people should speak out. I think that’s what’s happened in my case. As I’ve challenged a Dr they really don’t like it. Then playing god with your health and hiding behind jargon. I hope you and your daughters are alright these days.

Drs think we don’t know anything. But we are all learning faster than ever. Down to experience, internet and forums like this fabulous one.

My sister needed to see an Endocrinologist her symptoms very low energy and hair falling out. He told her there was nothing wrong but he thought she had depression. She came away quite upset as she was so unwell. She changed hospital. The new hospital found a lump in her neck. She had s fine needle aspiration. They found thyroid cancer. Within 2 weeks it was removed. Another balls up. There are so many stories of mistreatment and wrong diagnosis. Gosh it’s just awful.

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When people are looking to doctors for sympathy and their expertise it comes as an awful shock when they get treated as yours did to you.

They are in the wrong profession for sure.

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I was shocked and found it upsetting. I’m in the waiting room now waiting to see him. I’m not going to mention it. All I need to know is that I do not trust him now like I did initially. I saw him for the first time 4 months ago. I’ll stick with my private only Endocrinologist now.

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