prep for private endo appt: It’s taking an age to... - Thyroid UK

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prep for private endo appt

Insomania profile image
13 Replies

It’s taking an age to get the GP private referral letter (5weeks so far…).

I tried calling the private endocrinologist secretary last week but not answering.

Is there anything else I will need please?

Except for iron panel, my last blood tests were in January 2023.

Will I need to retest TSH/T3/T4/antibodies/vitD & B12?

I could start on that while I’m waiting…

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Insomania
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13 Replies
Buddy195 profile image
Buddy195Administrator

I would definitely retest TSH, FT3, FT4 plus key Thyroid vitamins (ferritin, folate, B12 and vitamin D) before seeing the private endo as it’s far cheaper to organise this yourself rather than have the tests in a private hospital. If you’ve already had antibody tests (eg to confirm Hashimotos) there is no need to repeat, however some members do like to monitor levels (eg mine reduced significantly… although still over range….when I adopted a GF diet)

thyroiduk.org/help-and-supp...

Insomania profile image
Insomania in reply toBuddy195

Thank you 🙂

Buddy195 profile image
Buddy195Administrator in reply toInsomania

I would also make a list of all questions you would like to ask/ list of symptoms. It can be easy to forget things once you are seeing a specialist, as time goes so quickly.

I hope your appointment goes well Insomania. 🦋

McPammy profile image
McPammy

Do as much preparation as you can. Get bloods done to avoid costly private hospital ones and write down your main symptoms It’ll save time and money when you finally get the referral letter. Can you put in a complaint to the GP Surgery practise manager about the length of time it’s taking to get the letter. It shouldn’t take any longer than a few day from your initial request really. Ask them what’s holding up your referral letter in the politest way.

Insomania profile image
Insomania in reply toMcPammy

I’m wondering whether to complain. I’ve been calling twice a week and it’s been stuck with the GP for about two weeks, for him to write.

McPammy profile image
McPammy in reply toInsomania

it shouldn’t take as long as it is. I had mine within a week when I first went private only to a brilliant Endocrinologist in Oxford. Now my GP and NHS Endo jump if I mention his name.

Insomania profile image
Insomania in reply toMcPammy

I’m in the other ‘bridge. I’ve picked an endocrinologist from thyroid uk list at a nearby private hospital who also works in the nhs. I’m hoping I can switch back into nhs at a later date.

McPammy profile image
McPammy in reply toInsomania

The only thing about an NHS/private endocrinologist is that they sometimes still follow the NHS guidelines on things. So if your local CCG is still following the liothyronine guidelines of not to prescribe you might not get it. I did go back to my NHS Endocrinologist who still refused prescribing liothyronine T3 even though my private 3 month trial was a great success. Eventually after some intervention from my GP and my private only endocrinologist the NHS did prescribe. I still keep my private only endocrinologist as my safety net with an annual consultation. I hope it all works out well for you The hoops we have to jump through to keep ourselves well at times is quite unbelievable

Gingernut44 profile image
Gingernut44

First off, get on to your surgery and ask why it’s taking so long for your referral letter. I wouldn’t have any blood tests until you have a date for your first appointment as you may have a wait and your tests could be out of date. You’ll only need TSH, FT4 and FT3 retested if you had your vits and minerals tested in January. MMH will probably be the cheapest option.

Insomania profile image
Insomania in reply toGingernut44

I’ve been calling twice a week and it’s been stuck with the GP for about two weeks, for him to write. When I rang on Thursday the receptionist said she’d ask another GP to do it.

Gingernut44 profile image
Gingernut44 in reply toInsomania

I would go and stand at the Reception Desk until the letter was in my hand, or write a scathing letter to the Practice Manager.

CoeliacMum1 profile image
CoeliacMum1

Happy Easter 🐣 🐰

That’s a ridiculously long time for a basic letter.

I definitely had all my GP letters within a week for my appointment, ring the receptionist at your surgery after Easter holidays and see if they’ve just sent it direct eg electronically.

The delay might be with endocrinologist I’m seeing one which takes an age to see regardless of going private - in comparison to my last or other consultants I’ve had in the past. One of my letters happened this way and once saw the Endocrinologist I asked for a copy for my records, this was in lockdown.

I’ve had tests done couple weeks prior all my appointments and found they all prefer their own tests, but this maybe because I have health insurance and actually just covered for everything so do them but obviously if this wait continues now it’s probably advisable to have another.

I found with all my initial appointments they normally ask for a time line of events, how and when symptoms started (list all, nothing is trivial) and when diagnosed (if diagnosed with a condition). Have a list of medications and supplements you take if any, and what has already been done eg any adjustments in medication to try and rectify the problem or areas to eliminate the problem. The cover letter from GP will probably only briefly give a reason for the appointment with latest results if you’re already diagnosed with a condition, although this depends on the GP. If GP already suspects a problem before referring they should have tested you prior to this referral, have your past results with you if you think they’re relevant to that appointment. I don’t go with every routine test but for instance if I’ve had in an increase in meds or decrease I’ve followed that with results… but regardless both Endocrinologist wanted their own tests… I have had increases in meds other things added in then taken out looking from another area to see if something else is the problem… it takes a long time with a wait of 6-8wks testing with every step… so maybe having as much information could possibly eliminate one stage that’s been tried before at least… I am a bit over organised (anxious probably about these things) and I look to make most out that appointment.

Insomania profile image
Insomania in reply toCoeliacMum1

Thanks for all the info!

I’ve done the timeline and list of meds, doses.

I’m self funding so I’ll do the blood tests beforehand.

The GP has categorically said the symptoms I’m experiencing are nothing to do with my enlarged thyroid. He thinks carers burnout. I’m getting a 2nd opinion.

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