Needed: An Endocrinologist

[Poppyfaery]

I've been quoted £200 for an initial consultation with an Endocrinologist by Spire. I'm shocked. Is this the norm? Can anyone help with referral advice? Thanks!

[Minnskimoo]

Hi Poppyfaery.

Sadly, it is. Private consutations vary depending on where you live and the nature of the consultation.

nhs.uk/common-health-questi....

Hoping this helps.

x

[SlowDragon Administrator]

Typically initial consultation is £250

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

[e-mail]

Previous post shows low Ft3

healthunlocked.com/thyroidu...

Recommend you spend a few months working on improving stuff yourself first ....then retest thyroid and vitamins ....before considering seeing an endocrinologist

Keep rereading previous post and all its replies

Basically

1) weening off omeprazole

2) cutting statins out

3) improving low vitamin levels

4) getting coeliac blood test. Assuming test is negative, Can immediately go strictly gluten free

Work through the list slowly, you can change everything at once

Retest Thyroid and vitamin levels 2 months after making all these changes

[Poppyfaery in reply to SlowDragon]

Hi hope your well, ive had a coeliac test I'm negative, you said I could go gluten free then surely don't need to, I've stopped the statins omeprozol vit d and forceval,and cut lithium down to 2 tabs instead of 3, im taking levo every other day and half a t3 tab that'll be 12 and a half mcg it's like a miracle I've been feeling so much better swam a mile this week done some gardening im still tired but my mental health has greatly improved,ive cancelled the endo as you have to go alone and someone said have a witness, im not a computer person or phone realy but feel a little better coping with it all now, the help I've received from the forum feels like I've been saved and that I'm not on my own I thank you all.

[SlowDragon Administrator in reply to Poppyfaery]

It’s always worth trying strictly gluten free diet....but you don’t need to try it straight away

See how you get on over coming months

Don’t want to make too many changes close together

One change at a time and wait at least 2 -6 weeks to assess

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

Low vitamin levels 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. Dairy is second most common.

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

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

Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse

chriskresser.com/the-gluten...

amymyersmd.com/2018/04/3-re...

thyroidpharmacist.com/artic...

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

restartmed.com/hashimotos-g...

Non Coeliac Gluten sensitivity (NCGS) and autoimmune disease

ncbi.nlm.nih.gov/pubmed/296...

The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported

ncbi.nlm.nih.gov/pubmed/300...

The obtained results suggest that the gluten-free diet may bring clinical benefits to women with autoimmune thyroid disease

nuclmed.gr/wp/wp-content/up...

In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned

restartmed.com/hashimotos-g...

Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.

Why gluten intolerance can upset cortisol levels

kalishinstitute.com/blog/gl...

[Lavender-Blue in reply to SlowDragon]

Hi

I understand that leaky gut can bw caused by Rogue bacteria that make their way our of the gut leading to leaky gut.

I have recently been making Kombucha and Kefir (very cheap to make) in order to introduce healthy probiotics.

Ombucha.co.uk and

Happy kombucha have some good information there and science stuff too.

[MissGrace]

My initial consultation was £250, although it did take over two hours. £175 for follow ups. Though again as much time as I need and I have spoken to the endo on the phone for help in between. No charge.

Have to say, he is worth every penny to me. Unfortunately, that is not always the case with private endos. I also realise that amount is prohibitive for so many people and that’s just not right. It’s shocking that for so many of us finances decide if we can get well or not.

🤸🏿‍♀️🥛

[Poppyfaery in reply to MissGrace]

Hi ive cancelled at the mo as you have to be alone and someone said have a witness just worried even though I feel so much better after taking half a tab of t3, did your guy prescribe t3 did you have to pay privately for your meds

[MissGrace in reply to Poppyfaery]

Will private message.

[humanbean]

The gastroenterologist I saw about five years ago cost more than that - about £270 if I remember correctly. He was even more useless than the average doctor and I just wasted my money.

I do everything I can to help myself these days. It works out much cheaper than involving a doctor.

[TrishG67 in reply to humanbean]

Hi Humanbean I too feel like my appointment with private gastro wasnt of much use. I felt quite patronised and a bit of a nuisance. I was given diagnosis of diverticular disease and GERD but other than offered PPIs which exasperated my pain and discomfort I was more or less left to get on with it . Any gastro advice you could share I would appreciate as the thyroid knowledge and advice you offer to others is hugely beneficial. Many thanks

[humanbean in reply to TrishG67]

I'm afraid my knowledge of gut problems is limited - I've been suffering since I was a teenager, and I'm old enough to receive a pension now.

[TrishG67 in reply to humanbean]

Ha ha no worries

[SlowDragon Administrator in reply to TrishG67]

My gastroenterologist appointment and private endoscopy was worth every penny....endoscopy confirmed severe gluten intolerance....(2 negative coeliac blood tests 20 years apart.....and subsequent DNA test on NHS ambivalent for coeliac)

The fact endoscopy confirmed gluten intolerance, plus heterozygous Dio2 gene test were both extremely helpful in persuading NHS to prescribe T3

[Poppyfaery in reply to humanbean]

Hi I'm feeling great to what I did I'm taking the levo every other day and a half of a t3 tab, i was told to take a quarter for 6 weeks but I felt I needed more no horrid side effects as yet , I've done it for around 7 days now. I've cancelled my appointment with the endo you had to go in alone, plus someone said have a witness, im wanting to know if I'm doing the right thing with the meds, what do you think please

[NWA6]

Hey Poppyfaery. Yes £200 + is normal.

Where are you getting your T3 from? (Don’t tell me your source! I’m just asking if it’s prescribed or self sourced?) The reason I ask is if you have a steady source of T3 then you don’t need an endo. Your previous results show quite clearly that you are not a good convertor. Your FT4 was too high and your FT3 much much too low. 10mcg a day (if that’s half a tab) is not enough.

Keep getting private testing and manage your own condition.

[Poppyfaery in reply to NWA6]

Hi I Got the t3 from someone imet who turned me on to the forum also, I havnt got a source yet and I'm not sure how to regulate it alone looking for help from the forum thanks for info

[NWA6 in reply to Poppyfaery]

Sourcing is a problem for sure, that would be my biggest worry but sure you can regulate it yourself (with experience from this forum), you’d be surprised at how much more you know than endos and you’ll pick it up quickly.

[Poppyfaery in reply to NWA6]

Hi would you know the difference between uni Pharma and tiromel thanks.

[NWA6 in reply to Poppyfaery]

In what sense?

[Poppyfaery in reply to NWA6]

I was gifted some UniPharma T3 and it did wonders for me but the difficulty is going to be sourcing it. Tiromel seems easier to access but I want to know if anyone who has tried both can tell me if they're interchangeable. Thanks!

[NWA6 in reply to Poppyfaery]

Ah I see. No I haven’t tried either, I’m on Thybon Henning. I know the advice is stick to a brand because some are sensitive to changes but you live with what you can get is my point of view. T3 is t3 in your case.

[MichelleHarris]

I paid £250 and he was useless and 90 mins late - a money grabber.

My NHS Endo is great x

[Poppyfaery in reply to MichelleHarris]

My doc wouldn't refer me to the nhs I was upset

[MichelleHarris in reply to Poppyfaery]

Not fair is it x

[AnnaSo]

I’d say £200 is pretty decent if anything. Make sure it’s someone endorsed by thyroid UK or there could be a heartbreak of paying all this money and getting rubbish consultation.

[shaws Administrator]

Look at a hospital near you and see if it has an endocrinology department. Ask GP to refer you (he may not as hypothyroid is supposed to be 'simple or easy' to treat).

It might be for some but for others it can be difficult and they are on this forum.

When you are going to get a blood test for thyroid hormones it always has to be the every earliest possible (even if you make it weeks ahead) and it is a fasting test but you can drink water.

A Full Blood Test consists of:-

TSH, T4, T3, Free T4, Free T3 and thyroid antibodies.

I'd request this from your GP first as I think they usually only do the TSH and T4.

You also need B12, Vit D, iron, ferritin and folate tested. Everything has to be optimal.

Put your results - with the ranges (ranges are important as labs differ and it enables members to respond) onto a new post for comments.

Always request a print-out of your results for your own records and you can post them on this forum for members to comment upon them. Always state the ranges (these are figures in brackets after the result) and it enables members to comment upon the results.

[Poppyfaery in reply to shaws]

I've had a private blood test I put it on the forum got loads of info my doctor won't refer me to an endo, I'm just looking around at the mo well hubby is I'm hopeless on computer etc many thanks

[AlexanderOgden]

I had to pay £300 for a consultation with an endocrinologist. At first, I was shocked and wanted to find a cheaper consultation, but as it turned out, this is a normal price. The most annoying thing is that the consultation lasted 20 minutes and this doctor did not tell me anything new. Then my friend recommended to me an endocrinologist whom he has been visiting for several years. As it turned out, his consultation is much cheaper and this is the first doctor who could really help me. For those who are now looking for a good endocrinologist, I recommend nycendocrinologist.com/.