Endocrinologist

[Monaka]

Hi, has anyone seen endocrinologist on NHS. I just think to ask my Gp to refer me and I wonder if I got any chance to do it?

As I want to change levothyroxine to NDT. A few years ago I used thyroid s for two years and I felt so much better. I only stopped talking because the price went up so much I couldn’t afford it. Now I feel like NDT is the only chance to get my life back. I have very dry skin, I loosing my hair, I have anxiety and pain in my foot bones. Not sure if vertical veins are due to my condition or I just an lucky to have it. My pulse is very low, same as blood pressure. Itchy head and food and skin allergies.

Thanks for any reply

[Lalatoot]

Yes it is possible to see an NHS endo. However even if your GP agrees to refer you, the endo may refuse the referral if they think your results are normal enough not to merit their attention.Ndt is not licensed for use in the UK so it is highly unlikely that you would be prescribed it on the NHS. You might get liothyronine t3 added to your levo on the NHS. This is difficult to get but folks do get it so it isn't impossible.

The first step is to get your GP to refer you.

[SlowDragon Administrator]

Before asking GP for referral you need to get full thyroid and vitamin testing done

How much levothyroxine are you currently taking

Do you always get same brand levothyroxine at each prescription

What vitamin supplements are you currently taking

Do you have autoimmune thyroid disease

First thing is, do you have any recent blood test results?

You are legally entitled to printed copies of your blood test results and ranges.

The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results

UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.

Link re access

healthunlocked.com/thyroidu...

In reality many GP surgeries do not have blood test results online yet

Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.

Important to see exactly what has been tested and equally important what hasn’t been tested yet

Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum

Low vitamin levels are extremely common, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis)

Autoimmune thyroid disease with goitre is Hashimoto’s

Autoimmune thyroid disease without goitre is Ord’s thyroiditis.

Both are autoimmune and generally called Hashimoto’s.

In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)

Recommended on here that all thyroid blood tests early morning, ideally before 9am last dose levothyroxine 24 hours before test

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins

List of private testing options and money off codes

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test

bluehorizonbloodtests.co.uk...

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code

thyroiduk.org/getting-a-dia...

monitormyhealth.org.uk/

NHS easy postal kit vitamin D test £29 via

vitamindtest.org.uk

Come back with new post once you get results

You need to get all four vitamins at good levels and fine tune levothyroxine dose as first step

Vast majority of endocrinologists are diabetes specialists and useless for thyroid

You need to know who you want to see

Email Thyroid U.K. for list of recommended thyroid specialist endocrinologist and doctors who will prescribe T3 or NDT

[e-mail]

On NHS it’s virtually impossible to get NDT prescribed

It’s difficult, but possible to get T3 prescribed on NHS

But there were over 58,000 prescriptions for T3 in England in last year

Typically that’s 6 prescriptions per person per year

openprescribing.net/analyse...

[SlowDragon Administrator]

Hairloss often linked to low iron or ferritin

Foot pain - Plantar fasciitis to low Vitamin D and/or low Ft3

Are you on strictly gluten free diet or dairy free diet

[DelicateInput in reply to SlowDragon]

I must say you are remarkably knowledgeable. I had plantar fascilitis a couple of years ago and I have low Vit D = 32 on a range of 50 to 200.

[SlowDragon Administrator in reply to DelicateInput]

You will see many posts about plantar fasciitis on here

healthunlocked.com/search/p...

My (ex) GP nearly fell off his chair laughing when I said my excruciating plantar fasciitis was linked to thyroid and particularly low Ft3 and low vitamin D

In almost all cases …..plantar fasciitis fades once Vitamin D and Ft3 levels are OPTIMAL

Ft3 at least 50-60% through range minimum

my vitamin D was 12nmol - I was never told or prescribed anything . Only found this out when I got access online to historical blood test results

Improving vitamin D did help, but not completely

Adding T3 (prescribed on NHS) was instant recovery of plantar fasciitis

[Monaka in reply to SlowDragon]

HiI am on dairy free diet and with gluten I am on and off as is very hard for me.

I have hashimoto’s but is not confirmed by my Gp. Anty TPO didn’t reveal anything. I only know as my sister booked me thyroid scan when I visited her in Poland. My thyroid is shrinking and I have nodules. I could have low level of vitamin D my Gp doesn’t want to do blood test to check it. I been told is to expensive and is not something what you can do on NHS !!

So I only do full blood and vitamins when I visiting my family in Poland as is so much cheaper.

I am going there in summer so is not long.

[SlowDragon Administrator in reply to Monaka]

Meanwhile working on improving low vitamin D

How much vitamin D are you currently taking

Low vitamin D

GP should prescribe 1600iu everyday for 6 months

NHS Guidelines on dose vitamin D required

ouh.nhs.uk/osteoporosis/use...

GP will often only prescribe to bring vitamin D levels to 50nmol. Some CCG areas will prescribe to bring levels to 75nmol or even 80nmol

leedsformulary.nhs.uk/docs/...

GP should advise on self supplementing if over 50nmol, but under 75nmol (but they rarely do)

mm.wirral.nhs.uk/document_u...

But with Hashimoto’s, improving to around 80nmol or 100nmol by self supplementing may be better

pubmed.ncbi.nlm.nih.gov/218...

vitamindsociety.org/pdf/Vit...

Once you Improve level, very likely you will need on going maintenance dose to keep it there.

Test twice yearly via NHS private testing service when supplementing or test in Poland

vitamindtest.org.uk

Vitamin D mouth spray by Better You is very effective as it avoids poor gut function.

There’s a version made that also contains vitamin K2 Mk7. One spray = 1000iu

amazon.co.uk/BetterYou-Dlux...

It’s trial and error what dose we need, with hashimoto’s we frequently need higher dose than average

Vitamin D and thyroid disease

grassrootshealth.net/blog/t...

Vitamin D may prevent Autoimmune disease

newscientist.com/article/23...

Government recommends everyone supplement October to April

gov.uk/government/news/phe-...

Taking too much vitamin D is not a good idea

chriskresser.com/vitamin-d-...

Web links about taking important cofactors - magnesium and Vit K2-MK7

Magnesium best taken in the afternoon or evening, but must be four hours away from levothyroxine

betterbones.com/bone-nutrit...

medicalnewstoday.com/articl...

livescience.com/61866-magne...

sciencedaily.com/releases/2...

Vitamin K2 mk7

betterbones.com/bone-nutrit...

healthline.com/nutrition/vi...

[SlowDragon Administrator in reply to Monaka]

Test folate, B12 and ferritin in Poland at same time as thyroid

Plus retest vitamin D

[judycopage]

I got my GP to refer me to the local endo after years of Levo T4 medication which did nothing. He did some blood tests and told me the results were in the normal range. He then discharged me, in spite of me saying I didn't feel well. I then asked my GP to refer me for a second opinion to a 'hypo sympathetic' doctor on the list from this website. He interviewed me by phone and asked a lot of questions, not only my physical and mental state but also more about my personal history, my work, and so on. For the first time I felt truly listened to. He put me on a T4/T3 regime and the difference with adding T3 was nothing short of a transformation. This is 7 years after my first diagnosis. Patience and self advocacy does work.