Best current practicing UK thyroid specialist e... - Thyroid UK

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Best current practicing UK thyroid specialist endo?

Salphy profile image
21 Replies

Hi as above looking for the most recommended endo in the UK. Preferably private if possible. Currently on a 4 month waiting list at Salford royal.

I have requested the list from Louise but there's none in my area. The closest I'm looking at is a 4 hour drive to Edinburgh and a £200 initial consultation fee to see a lady who has some negative reviews on this forum.

So I was thinking if I'm going to go through the trouble I may as well make it count and find the best in the country (if there is one)

Could you please PM recommendations as per forum guidelines thank you :)

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Salphy profile image
Salphy
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21 Replies
SlowDragon profile image
SlowDragonAdministrator

While your waiting to see consultant it's important to get vitamin levels optimal and if you have high thyroid antibodies try strictly gluten free diet

Have you had antibodies tested, or vitamin D, folate, ferritin and B12?

Can you add results and ranges if you have them

For full Thyroid evaluation you need TSH, FT4, TT4, FT3 plus TPO and TG thyroid antibodies. Plus vitamin D, folate, ferritin and B12.

Essential to test thyroid antibodies plus vitamins

Private tests are available.

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

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.

All thyroid tests should ideally be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).

About 90% of all hypothyroidism in Uk is due to Hashimoto's

Salphy profile image
Salphy in reply to SlowDragon

Thanks slowdragon. I have had antibodies done which were positive for hashimoto's though tgo much higher than tpo.

I'm on 12 weekly b12 injections and supplement vit d and folate which are OK now. Ferritin sometimes comes back low but iron "healthy high" so don't want to supplement that.

Current results 6 weeks after recent increase:

Tsh 2.52 (0.27-4.2)

T4 14.7 (12-22)

T3 3.78 (3.1-6.8)

Previous results before increase (same ranges)

Tsh 2.23

T4 12.5

T3 4.5

But she won't increase me again until I've seen a specialist because I'm in range x

SilverAvocado profile image
SilverAvocado in reply to Salphy

Omg, the doctor sounds a right lunk head! It's obvious those results are still very low.

Salphy profile image
Salphy in reply to SilverAvocado

I get that she might just not be confident to but It's just frustrating that I've got to spend the next 4 months on a waiting list feeling crap.

I asked to be increased in the meantime whilst waiting but she said no.

One of the consultants at the hospital I've been referred to can fit me in privately within 4 weeks but for £350 :(

SilverAvocado profile image
SilverAvocado in reply to Salphy

Yea, it's a ridiculous wait, and seeing an Endo is also a roll of the dice, as many are just as bad as GPs.

Best practice is to have dose adjusted every 6 weeks. But we very rarely see that :(

I hope you got some replies suggesting people? To my knowledge there isn't a best Endo, but there is one best doctor overall, who now no longer practices as a doctor. But to see him you kind of have to be outside the mainstream system altogether, as he can't prescribe.

SilverAvocado profile image
SilverAvocado in reply to SilverAvocado

I feel like I've just written a treasure hunt clue, there! But hopefully you know who I mean :)

Salphy profile image
Salphy in reply to SilverAvocado

Really sorry but I don't :( I've heard a few names thrown around on here (dr's t, p and S) but I think one has died?

The others I would have no idea how to find without being mainstream. I'll see if google can help. Otherwise I'd really appreciate if you could PM :)

As he can't prescribe can he advise my gp what to prescribe? Or would it be completely off the radar? I'm willing to try anything to feel well but not ready to go it completely alone yet due to planning pregnancy.

Thanks

SilverAvocado profile image
SilverAvocado in reply to Salphy

No problem, I will send you a PM!

SilverAvocado profile image
SilverAvocado in reply to Salphy

No problem, I will send you a PM!

Helena877 profile image
Helena877 in reply to Salphy

Try Spire Hospital. I went to a private Endo in Elland (off the M62). It cost between £150-200 and took a few days to get an appointment with him. No need for a referral from GP.

Salphy profile image
Salphy in reply to Helena877

Thanks when was this? I've been recommended one at spire Hale but it's £350 for initial assessment then £150 per review x

Salphy profile image
Salphy in reply to Helena877

Thanks when was this? I've been recommended one at spire Hale but it's £350 for initial assessment then £150 per review x

Helena877 profile image
Helena877 in reply to Salphy

About 18 months ago. Maybe there is a variation of prices. Hale is a wealthy area, Elland much less so.

Helena877 profile image
Helena877

Why are you wanting to see a private Endo? Alternate treatments?

Salphy profile image
Salphy in reply to Helena877

I'm not sure. I just want to feel well. I've never really felt well on levo but felt better when my results were almost optimal but it only lasted a couple of months then gradually started to decline again.

My gp increased my levothyroxine bg 12.5mcg when my tsh increased from 0.29 to 2.23.

It's now increased to 2.53 despite the increase and she's refusing to increase any further without being seen by a specialist because I'm within range.

But the specialist is a 4 month wait. I'd like to see someone who would be willing to try alternatives if I can't get stable on t4 but at the minute just don't want to be in limbo slowly getting worse x

SlowDragon profile image
SlowDragonAdministrator in reply to Salphy

Your under medicated.

NICE guidelines saying how to initiate and increase. Note that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine

cks.nice.org.uk/hypothyroid...

Official NHS guidelines saying TSH should be between 0.2 and 2.0 when on Levothyroxine

(Many of us need TSH nearer 0.2 than 2.0 to feel well)

See box

Thyroxine replacement in primary hypothyroidism

pathology.leedsth.nhs.uk/pa...

Your antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).

About 90% of all primary hypothyroidism in Uk is due to Hashimoto's

Essential to test vitamin D, folate, ferritin and B12.

Always get actual results and ranges. Post results when you have them, members can advise

Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels

Low vitamin levels can affect Thyroid hormone working

Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

But don't be surprised that GP or endo never mention gut, gluten or low vitamins. Hashimoto's is very poorly understood

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies

Ideally ask GP for coeliac blood test first, plus vitamin tests

thyroidpharmacist.com/artic...

thyroidpharmacist.com/artic...

amymyersmd.com/2017/02/3-im...

chriskresser.com/the-gluten...

scdlifestyle.com/2014/08/th...

drknews.com/changing-your-d...

thyroidpharmacist.com/artic...

Salphy profile image
Salphy in reply to SlowDragon

Sorry I forgot to say I'm already gluten free :) but I went gluten free around the same time my levels started to play up again (October) so I'm not sure if it's connected but I'm going to stick it out for a year then see if reintroducing makes any difference. The only thing I've found so far is that I'm less bloated.

Thank you x

SlowDragon profile image
SlowDragonAdministrator in reply to Salphy

Good you are GFree

You're still under medicated.

Helena877 profile image
Helena877 in reply to Salphy

I will Private message you with the private Endo’s details in Elland.

There is also a private Dr who specialises in bio-identical hormones not too far from Salford. I use him - he’s great and you won’t have anything like a four month wait. The cost is less than you have been quoted.

In my own experience the real experts are found on here. Private GPs will prescribe Dessicated thyroid but don’t necessarily know huge amounts about thyroid issues.

Salphy profile image
Salphy in reply to Helena877

Thank you. What are bio-identical hormones?

Helena877 profile image
Helena877

Non synthetic replacements of hormones such as Dessicated Thyroid, oestrogen, progesterone, testosterone etc

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