Can I demand a referral to endocrinologist - Thyroid UK

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Can I demand a referral to endocrinologist

candi1 profile image
18 Replies

Hello....I'm having real problems with my GP. I have ( i think...Hashimoto....have elevated antibodies) and am on levothyroxine 125mcg . I still have ALL the symptoms of low thyroid, dry skin, hairloss etc. etc. I also have insulin resistance, PCOS....In fact I recon I have the perfect metabolic storm. My Gp tells me that no endocrinologist would bother seeing me.....can this be true ??? in the UK ???

Have others here been faced with the same situation ? if so, how have you dealt with it? If you ended up having to go private, and that resulted in a change of treatment......did your GP then agree to keep the new treatment regimen going.?

Any advice appreciated....thankyou

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18 Replies
Wired123 profile image
Wired123

You need to have symptoms that can’t be rectified by GP, you may have to jump through hoops and state all the symptoms you are having.

If all else fails change GP

MichelleHarris profile image
MichelleHarris

I has no trouble being referred to NHS Endo after being diagnosed a few months earlier. But I think I was lucky. There was a long waiting list and I saw a private Endo in the meantime. He cost £250 and he was 90 mins late and was rubbish. When I did get to see my NHS Endo he was great. I agree you should get to see an Endo if youre unhappy with your health. If you go the private route then see one from the HU list x

candi1 profile image
candi1 in reply toMichelleHarris

Thanks......yes I think I'll have to go that route......I was mostly concerned about ie......If I find someone private that is really great and we manage to get a succesful treatment regimen going.........will my ignorant GP agree to carrying it on, because I cannot afford to keep seeing someone private every time I need a new prescription etc. etc.

MichelleHarris profile image
MichelleHarris in reply tocandi1

Can you change your GP ? I changed my arrogant GP with a great outcome x

candi1 profile image
candi1 in reply toMichelleHarris

I'd loive to change GP....I live in London though and the catchment areas are quite small.....ie...there are only two other gp surgeries available to me and I really don't know if they're any better than mine. I'm definately looking into it though

MichelleHarris profile image
MichelleHarris in reply tocandi1

Doesnt sound like you have much to lose. I guess if next ones the same you could try the third ? We should get better treatment and you shouldnt have to go through this x

Wired123 profile image
Wired123 in reply toMichelleHarris

I think I can guess who this Endo was... will PM you!

fuchsia-pink profile image
fuchsia-pink

You can't demand to see an NHS endo; you can ask nicely for a referral but the GP isn't obliged to refer you or the endo agree to see you even after a referral. You can easily see a private endo - I saw one in London last November and can send you details if you are interested - but it won't necessarily help. You would ideally have full blood test results before seeing anyone - and need to know what you were looking for.

In my case, I was getting NHS lio but wanted a second opinion about a dose change the endo wanted to do ... I saw someone who was knowledgeable and but, as it turned out, not an advocate for lio. He wrote to my GP to confirm the appointment and I had my lio stopped for 2 miserable weeks (see my earlier post) as a result of his letter until the GP kindly re-instated the NHS endo's prescription.

I now get my thyroid expertise from this forum :)

So in your case, I'd invest in full blood tests and post the results (and ref ranges) here. Get TSH, free T4, free T3, all thryoid antibodies, ferritin, folate, vit D and B12. Then hopefully the replies will enable you to have a more informed chat to the GP - and if you do need to see an endo - more of a plan about what you want to achieve from it. There's no guarantee that a prescription from a private endo would betaken on by your GP either

candi1 profile image
candi1 in reply tofuchsia-pink

Thanks for your answer......but I have done all this, including all blood tests...done private....and posted here. I have had really bad symptoms for years and my GP WILL NOT acknowledge any of them......he just says that my symptoms, quote...'could be anything'.....when in fact, every single symptom is thyroid related. Believe me....I have studied this and am not some neurotic hypochondriac....which is how my GP views me. That is why I have decided, as many others here.....to take action for myself.

I just think it is wrong that so many of us are left to work this out ourselves with little or no support from our GPs !!!!

fuchsia-pink profile image
fuchsia-pink in reply tocandi1

I'm not unsympathetic ... I don't know why some GPs are so utterly useless.

Have you had the list of recommended private endos from Dionne at Thyroid UK (and/or the T3-friendly list if that's where you may want to go)? In your place I think I'd try and see an endo privately - and then try and get to see him/her on the NHS after that if s/he agrees you have thyroid issues s/he can help with ... If you have someone lined up who's prepared to see you, I'd have thought it makes it pretty hard for the GP not to refer you ...

I'll send you a PM about the chap I saw x

candi1 profile image
candi1 in reply tofuchsia-pink

Thankyou....much appreciated

SlowDragon profile image
SlowDragonAdministrator

Before considering seeing any thyroid specialist Endo you need to get FULL thyroid and vitamin testing

Will add links later

Plus email Dionne at Thyroid UK for list of recommended endos

What vitamin supplements are you currently taking

When were vitamin D folate ferritin and B12 last tested

How much levothyroxine are you currently taking

Do you always get same brand of levothyroxine

Please add most recent thyroid results and ranges

All thyroid tests should be done as early as possible in morning before eating or drinking any thing apart from water and last dose levothyroxine 24 hours before test

Is this how you do your tests

candi1 profile image
candi1 in reply toSlowDragon

Thankyou again SlowDragon......sorry about delay in responding.....I've been having computer issues. I have emailed Dionne who did kindly send me the list, which I am mulling over right now. I did take your advice about holding back on second 25mcg upgrade in Levo.....got a test done yesterday.....waiting to see if the first 25mcg upgrade bought my TSH down before starting on second prescription. Will post back with any news

This is such a great site...really...it seems that it is the only place to get any proper, sound advice, and I thank you all for sharing both, advice and experiences, it is such a help.

Lalatoot profile image
Lalatoot

Just as the others have said - you cannot demand to see an NHS endocrinologist. If your GP did decide to refer you, the endocrinologist can refuse the referral. This they do if they think that the GP can manage your treatment.

SlowDragon profile image
SlowDragonAdministrator

Email Dionne at Thyroid UK for list of recommend thyroid specialist endocrinologists

tukadmin@thyroiduk.org

Any NHS referral can take many months, even if GP would refer you and no guarantee that you get to see actual endo you requested

thyr01d profile image
thyr01d

I was told by someone who knows that you can insist on a referral, and I did. It doesn't lead to a good relationship with your GP! For me it was worth it and may be for you, depends how ill you are I suppose. Knowing that I could insist I wrote a letter, it took many weeks before I had a reasonable rather than an angry and upset letter, but I finally managed. Should also warn you that the first endo I saw recommended an increase in Levo which would have made me even worse (I don't convert properly) but luckily my GP could see that was wrong and let me choose another endo to be referred to.

Very best of luck.

candi1 profile image
candi1 in reply tothyr01d

Thankyou to you all ....sorry for delay in responding, have had computer problems.........I have got the list that Dionne very kindly sent to me and am doing my research....will post back with any news

candi1 profile image
candi1 in reply tothyr01d

Thankyou....I think that your approach is one that I will take too.......I will try the letter to my GP route......I guess that if they have it in black and white it's a bit harder to dismiss out of hand.......I will keep it polite too !!!!

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