Recent Appointment with the Endocrinologist

[TVOReason]

Hi Everyone I just thought I would update you on my appointment with the Endocrinologist.

What a total and utter waste of time, it was a good job I didn’t go in with any heightened sense of optimism (thanks to this forum and the experiences of many thyroid patients)

This is the outline of the consultation and it is abridged otherwise it would go on to be too long.

I gave him a list of my symptoms and the print outs of my blood tests and asked for a trial of NDT. I spoke quite authoritatively on the subject (thanks to this forum) but he was having none of it he used the argument that it was unstable, which I refuted, he also said if I was to take it I would be then outside of the nhs that he nor any of his colleagues supported such an action.

He never looked at the paperwork I had provided, he stated that he didn’t think my symptoms were thyroid related but didn’t go on to say what it might be or that tests should be done in other areas. The consultation appeared to be just a tick in the box and I left feeling so frustrated and angry, I felt he was more interested in the diabetic side.

I am waiting for my results of vitamins b12, folate, iron and vitamin d which 8 shall post on this forum and then make a decision about NDT.

Thanks to everyone on here, where else do we have to turn to when we are close to despair.

[jrbarnes]

I've never been to a helpful endo and they're mostly interested in diabetes. They have this long confused lazy stare as they sit there in their little chairs pushing pencils around saying things like "this looks normal."

[Hidden]

Al a load of lies! - NDT is not unstable, it is the ONLY medication that gives me and thousands of others worldwide enough energy to actually get up in the morning and actually do some meaningful work.Some of his colleagues actually do support taking NDT and all of those who do support it MUST* tell their patients of the fact that NDT may give them relieve from the awful result of having to take Levothyroxine when that medicine will leave them permanently unwell for the rest of their lives

Quote from the rules of the GMC which can be viewed on the GMC website:

"Consent - patients and doctors making decisions together";

part 2 "making decisions about investigations and treatment, Sharing information and discussing treatment options" states:

"(9) You MUST give patients the information they want or need about:

(l) any treatments that you believe have greater potential benefit for the patient than those you or your organisation can offer."

All 7-8 CCG's in the County where I live have authorised a local thyroid SURGEON to prescribe and monitor NDT (on private prescription). How can anybody expect that ANY endocrinologist in this area will honestly continue to believe the utter nonsense submitted by the likes of the BTA and NICE when part of their responsibilities has been taken away and given to a non-endocrinologist????

[Buddy195 Administrator]

I’m so sorry TVOReason, I hope the endo wasn’t on the TUK recommended list. It’s frustrating when you wait to long for an opportunity to see a ‘specialist’ and they offer no support. I’m lucky that I have a good endo, but I’ve seen a few ophthalmologists who have had little knowledge of TED and Ive come away thinking I know more than they do!

[Snqanq in reply to Buddy195]

Hi, seen you have a good endo you’re lucky just quick ask If you live in london if so pls recommend, thanks x

[Buddy195 Administrator in reply to Snqanq]

Sorry no I’m in Yorkshire, but you can email Dionne at TUK for a list of recommended endos.

[HashiFedUp]

I had the same experience so went private- £150 - the best money i ever spent - now on NDT and my life is so much much much better!

[Snqanq in reply to HashiFedUp]

You are lucky.. if Possible pls recommend your private endo if in london, thanks

[TVOReason]

Totally agree with you Jonathan1956. I have worked since I left school, I have never taken any time off work as I never had a family so 44 years of paying NI and can’t even get a trial of what might make a significant difference to my health.

[shaws Administrator in reply to TVOReason]

If you're not yet a member of Thyroiduk they are behind the scenes to try to change the attitudes and the way we're diagnosed and prescribed.

I wouldn't have recovered if I hadn't found TUK and am so glad that I came across them. It was started by Lyn Mynott as she also had difficulties when first diagnosed. She's also met with MPs and organisations to try to change the attitudes of the medical professionals.

thyroiduk.org/help-us-to-he...

[shaws Administrator]

Due to the fact that many hypo patients recover their health on levothyroxine alone, the assumption by the medical professionals is that we should all have relief of symptoms if we're prescribed levo and they are convinced that levo is the 'perfect' replacement.

It might be for millions - I also think that there must be thousands of people who are not quite 'well' but don't know the reason why. They will also not have an internet connection to search for help/advice.

When I took levo I had severe palpitations, especially during the night and the cardiologist was puzzled and I had many 'overnight' records of my palpitations. He couldn't figure this out and was considering putting an implant into my heart to 'see what was going on'. Just at that time I was prescribed some T3 added to T4 and severe palps resolved and I never saw the Cardiologist again.

Re NDT (made from animals' thyroid glands)- even though it was introduced in 1892 due to clinical symptoms alone (no blood tests invented) and was the very first replacement hormone which saved lives from then on but has now been withdrawn in the UK. A private Endo may prescribe for you but you'd have to pay (I believe) for the tablets as well as for the consultation.

We are unwell and have an autoimmune disease but it seems that the Endocrinologists have to go along with their 'organisations' decisions whether they want to or not.