Private Endocrinologist Advice!!: I’m looking to... - Thyroid UK

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Private Endocrinologist Advice!!

PrincessAnnie profile image
23 Replies

I’m looking to see if anyone has had any better care going private,I’m at the stage now I’d happily pay, if it meant finding someone who actually knew what they were talking about and could help me.

Are they about in the same league as the NHS and would I just be wasting my money?

I’ve had a rotten weekend and I’m feeling so sorry for myself😤😢

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PrincessAnnie profile image
PrincessAnnie
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23 Replies
SlowDragon profile image
SlowDragonAdministrator

Has GP increased your levothyroxine dose yet

Roughly where in U.K. are you

Email Thyroid U.K. for list of recommended thyroid specialist endocrinologist and doctors

tukadmin@thyroiduk.org

Typical initial consultation is approx £250, follow up cheaper

Some endocrinologists are still doing consultations on zoom

Anyone with any suggestions private messages only

SlowDragon profile image
SlowDragonAdministrator

Realised you can’t reply re where you are in U.K. if I turn replies off!

Any members who have recommendations re endocrinologist…..private messages only please

PrincessAnnie profile image
PrincessAnnie in reply toSlowDragon

I wasn’t actually looking for recommendations,more what peoples experiences were of going private.It’s a lot of money to put out if it’s just going to be the same care you receive on the nhs,if that makes sense🤦‍♀️

dizzy864 profile image
dizzy864 in reply toPrincessAnnie

Hi, I ve seen 2 privately in last 3 years. First travelled well over 100 miles to see. He gave me dangerous advice - halve meds, no need for blood tests as many of my patients are fine on that dose! I refused to pay him and he never persued it. The second told me to take HRT as my lack of eostrogen was causing my lio to not be adsorbed. Absolute rubbish! HRT blocked levo being absorbed. I became very hypo and very ill. This had horrendous consequences. Cost me £500 as well although that really was the very least of my problems. Personally I m never going to see another endo private or NHS. All I needed was liquid levo!! There must be good ones out there but I really don't know how to find them. Both came with several recommendations from people on this site! It really comes down to the nature of your particular problem, I guess.

Barrister profile image
Barrister

It very much depends on finding the right endocrinologist. I see a private Endo although I wasn’t referred to her for my thyroid, I was referred because I developed Addison’s disease. She’s great and whenever I feel that my NHS doctor isn’t listening to me, I see her and she listens and takes on board what the problems are and we go on from there.

Mitch27 profile image
Mitch27 in reply toBarrister

May I ask how your Addison's was diagnosed and your symptoms ? I did the saliva test which gave very low waking cortisol suggesting possible Addison's .my gp said...rubbish ...😠😠😠😠 I wake up with jitters bit she's just ignoring it. She did s blood test which was at 9am....hours after I wake up and said ...it's fine ,..😠

Barrister profile image
Barrister in reply toMitch27

An early morning cortisol blood test is the usual first line of testing. But most GPs have no idea of what is “fine” or not (some endos don’t either to be honest) but I was diagnosed with a SST after I had an adrenal crisis after a gastroscopy. If you can find out what your early morning cortisol was (8-9 am is the time when your cortisol levels will be highest - mine was 15 so that gives you an idea of how ill I was ) then we can go from there.

HashiFedUp profile image
HashiFedUp

Massive improvement in my care from seeing private consultant. And it’s not expensive- £100 a couple times a year.

PrincessAnnie profile image
PrincessAnnie in reply toHashiFedUp

Could you please private message me the consultant you seen.

Moog77 profile image
Moog77 in reply toHashiFedUp

Could you PM me the consultant details too.

Starfish9 profile image
Starfish9 in reply toHashiFedUp

Hi, I would really appreciate it if you could send me your consultant’s details too in a private message.

Localhero profile image
Localhero

I do see someone privately who I think is good and generally listens. There have been times when I’ve had to make a case for something that he’s initially against (eg a dose increase) but I generally get there because he’s open to discussion.

I did see someone else once (and only once!) who was shocking and no better than my GP.

My point is that going privately is not necessarily the holy grail you might imagine. You still have to have your wits about you and be prepared to advocate for yourself. Still, you can pick and choose more easily. And if you’re prepared to put the effort in to establishing an Adult-Adult relationship, it can pay dividends.

PrincessAnnie profile image
PrincessAnnie in reply toLocalhero

This is my worry,I can just about afford to pay,I don’t want to have to pay one for a consultation only to find they’re no good,then have to pay out for another.

pennyannie profile image
pennyannie in reply toPrincessAnnie

I paid 185 pounds to be told :

' go on the net, buy your own and come back to me privately and I'll monitor you ' :

This was said to me by the Head of Endocrinology in the hospital where all my treatment and RAI thyroid ablation had happened and I was, at the time, just wanting to know :

' What had gone wrong and why didn't I have any saliva and why was my ferritin at 22 ? ' as this was the only result I had been told and in an ever increasing circle of unwellness :

I didn't get any answers to my questions :

Ultimately I ended up doing precisely this, but I wasn't going back, as it was, by then a year later, after having been discharged from the NHS and referred to as a conundrum by my doctor who discredited the private endo saying he only got the jo because he had been there the longest.

So angry and upset I was not prepared to trust any medic again, and so, with a couple of books I did it for myself :

PrincessAnnie profile image
PrincessAnnie in reply topennyannie

This is my worry🤦‍♀️

pennyannie profile image
pennyannie in reply toPrincessAnnie

Well, you can always throw up the name of the person you think you might like to invest in ;

The post will be closed but forum members will PM you if they have experience of this person.

Thyroid UK the charity who supports this forum also holds a list of NHS and private endos and specialists in thyroid which relies solely on feedback from forum members - it might be worth contacting admin @ Thyroid UK and at least have some clue.

I thought in Scotland it was deemed easier to be prescribed T3 - Liothyronine if that's is the course of action wishing to be taken.

PrincessAnnie profile image
PrincessAnnie in reply topennyannie

I hope it is🙏

hyp0thyr01d profile image
hyp0thyr01d

I think it really depends on the Endo. I've found a really good one on the NHS, obviously he can only treat within the realms of what the NHS allows but I'd pay to see him privately. Some are useless and don't have a clue regardless of the fact that they're private.

PrincessAnnie profile image
PrincessAnnie in reply tohyp0thyr01d

If you paid to see him privately would he be able to prescribe privately?

hyp0thyr01d profile image
hyp0thyr01d in reply toPrincessAnnie

I guess so, experience thought. I'll DM you.

Fifteen profile image
Fifteen

It depends on who you see. I have only once seen an NHS endocrinologist and he was just beating his own drum, i.e. useless. One of the Consultants I saw privately was not impressive; the recent one I saw was worth the money - interested, knowledgeable, flexible. I found him from the Thyroid UK list and my own research.

Timetraveler67 profile image
Timetraveler67

When I first got sick I traveled 2 half hours to see a private endo I was nieve and trusting and looking back now 4 years later realise he saw that and just told me anything to pass the time. I took a print out of my latest results but he said he didn’t need to see them, he asked me what I needed and because Thyroide was all new to me I said I’m not sure, he gave me a prescription for T3 with no instructions how to take or what to expect- consultation cost me £180 and cashing the prescription cost me £225 he said I could only cash it at a certain chemist which was another 30 miles away or ring a number so I Took the number and I rang it and a man told me pay over phone then he would send me the tablets. They arrived in a brown bottle with T3 written on No leaflet or anything with them at all. Anyway even though my mind was boggled at the time I felt suspicious and tried to identify the pills on line but found none that looked like these T3. It was then I found and joined here I never mentioned my experience before because I felt embarrassed that I could have been taken for a ride like I obviously was. Found out this private endo was struck off in his country but allowed to practice here in uk. He’s still seeing patients now. Because of my experience I would never go private again plus I can’t afford it now anyway. Hope it was ok to share this with you I no way want to scare you because I’m sure there’s plenty of genuine Drs out there sadly I was just unlucky.

PrincessAnnie profile image
PrincessAnnie in reply toTimetraveler67

Hey I don’t think your trying to scare me at all,I’m a very suspicious person and I’m well aware of the devious people in society,that’s why I was looking for some advice,You have absolutely no need to feel embarrassed,you were desperate,I’m sure everyone here has been there,

It angers me greatly that thyroid patients don’t get the help they clearly need and have to resort to these measures in the first place,I’m so sorry you had to go through that and I really appreciate you sharing your story.

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