How to get GP refer me to Endo

[Adam10]

My NHS local GP declines to refer me to an Endo - says no need. I’ve tried twice. GP says she can handle. I’ve argued I’m not thyroid balanced with fatigue and brain fog and need higher dose for winter and get my TSH below one. GP says below 4 is good enough. Any suggestions please?

[SeasideSusie Remembering]

Adam10

Here is some information that you can discuss with your GP about where TSH should be:

From GP online

gponline.com/endocrinology-...

Under the section

Cardiovascular changes in hypothyroidism

Replacement therapy with levothyroxine should be initiated in all patients to achieve a TSH level of 0.5-2.0pmol/L.

Also, Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine (the professional publication for doctors):

"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l. In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l. Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l. This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l).*"

*He confirmed, during a talk he gave to The Thyroid Trust, that this applies to Free T3 as well as Total T3 and this is when on Levo only. You can hear this at 1 hour 19 mins to 1 hour 21 minutes in this video of that talk youtu.be/HYhYAVyKzhw(Not working as expected?)

You can obtain a copy of this article from ThyroidUK (although the office is closed until 4th January):

[e-mail]

print it and highlight Question 6 to show your GP.

But also, what are your FT4 and FT3 levels? If these are low in range then you have more ammunition.

[shaws Administrator in reply to SeasideSusie]

Thanks for posting. Dr Toft is also [pysician to the Queen when she's in Scotland.

[SlowDragon Administrator in reply to shaws]

Was …he is now retired completely

[SlowDragon Administrator]

Vast majority of endocrinologists are diabetes specialists and useless for thyroid

Email Thyroid UK for list of recommend thyroid specialist endocrinologists

...NHS and Private

[e-mail]

The aim of levothyroxine is to increase dose upwards in 25mcg steps until TSH is ALWAYS under 2

When adequately treated, TSH will often be well below one.

Most important results are ALWAYS Ft3 followed by Ft4. When adequately treated Ft4 is usually in top third of range and Ft3 at least 60% through range (regardless of how low TSH is)

Extremely important to have optimal vitamin levels too as this helps reduce symptoms and improve how levothyroxine works

What are your most recent thyroid and vitamin results

How much levothyroxine are you currently taking

Get FULL Thyroid and vitamin testing done BEFORE considering booking any consultation with thyroid specialist endocrinologist, especially if private consultation

Essential to regularly retest vitamin levels and maintain optimal vitamins for good conversion of Ft4 to Ft3

First step See different GP

[SlowDragon Administrator]

Looking at your profile you have Hashimoto’s and are on strictly gluten free diet

Did you see improvements

If gluten intolerant, likely to have poor conversion of Ft4 to Ft3

[Crissy53 in reply to SlowDragon]

I have perfect thyroid numbers so far. 1.5 my vitamin D levels are great! My t3 t4 perfect and have been that way all year long. My antibodies numbers have gone from upper 200s to 11 since I have drank supergreens powder and Collegen. I am super pleased with my results as I age I find it so important to watch my diet. I want to stay as young as I can. Lol

[Adam10 in reply to SlowDragon]

Hi slowdragon, gluten-free diet brought my thyroglobulin antibodies down to 118 (range 0-115) and thyroid peroxidase antibodies to 44 (range 0-34), both lower than before.

My TSH is 1.88 (0.2-4.2), FT3 at 3.95 (3.1-6.8) and free thyroxine FT4 at 12 (12-22). So conversion FT4 to FT3 looks low. I never know what it should be.

My vitamin D3 is 80 (50-200), my folate is at 7.8 (3.8-19.4) and my ferritin is low at 53 (3-400). Will appreciate your thoughts and suggestions.

[SlowDragon Administrator in reply to Adam10]

Assuming test was done as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

Low Ft4 shows you are under medicated and need 25mcg dose increase in levothyroxine

Aiming for Ft4 at least around 18-20 through range

Approx how much do you weigh in kilo

Guidelines on dose levothyroxine by weight is approx 1.6mcg levothyroxine per kilo per day

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,

"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.

In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.

Most patients will feel well in that circumstance.

But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."

You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor

 please email Dionne at

[e-mail]

TSH should be under 2 as an absolute maximum when on levothyroxine

gponline.com/endocrinology-...

Replacement therapy with levothyroxine should be initiated in all patients to achieve a TSH level of 0.5-2.0pmol/L.

NHS England Liothyronine guidelines July 2019 clearly state on page 13 that TSH should be between 0.4-1.5 when OPTIMALLY treated with just Levothyroxine

Note that it says test should be in morning BEFORE taking levothyroxine

Also to test vitamin D, folate, B12 and ferritin

sps.nhs.uk/wp-content/uploa...

Graph showing TSH in healthy population

web.archive.org/web/2004060...

[SlowDragon Administrator in reply to Adam10]

Ferritin should improve as dose levothyroxine is increased

But meanwhile increasing iron rich foods in diet

Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption

List of iron rich foods

dailyiron.net

Links about iron and ferritin

irondisorders.org/too-littl...

davidg170.sg-host.com/wp-co...

Great in-depth article on low ferritin

oatext.com/iron-deficiency-...

drhedberg.com/ferritin-hypo...

This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.

Thyroid disease is as much about optimising vitamins as thyroid hormones

healthunlocked.com/thyroidu...

restartmed.com/hypothyroidi...

Post discussing just how long it can take to raise low ferritin

healthunlocked.com/thyroidu...

Never supplement iron without doing full iron panel test for anaemia first

Low Iron and low thyroid levels linked

healthunlocked.com/thyroidu...

[humanbean]

You might find this thread of interest :

healthunlocked.com/thyroidu...

The sources for the two pictures (the graph and the table) have been given and you can print them out separately from the thread, The graph has more info on the source page that is worth reading. And the table comes from a research paper.

[shaws Administrator]

Tell GP to join this forum where she will be able to extend her knowledge and also help her hypothyroid patients to recover their health.

[Lalatoot]

Even if the Dr referred you, the endo can refuse to see you if they think your results are fine enough by their standards. In general it is felt by many medics that hypo is something that GPS deal with.

[thyr01d]

Hi Adam10, I was in the same position as you until someone knowledgeable told me that we have a right to see a specialist, you can therefore insist. Having done this the first endo I saw would have made me worse, luckily my GP could see that, so I was referred to another endocrinologist, this time my own choice, and now I am much better medicated. I did have to write a strong letter to my GP to achieve the initial referral in which I mentioned that I would hold her responsible for any consequences of not being properly medicated, but that was after over a year of trying pleasantly to get her to agree to a referral with her responding that she knew as much about thyroid problems as an endocrinologist would so she would not refer me. We have now re-established a good relationship and I would recommend you only use my tactic if you can't get the referral by asking firmly.Sorry, this sounds awfully lecturing, it's not meant to, I'm just trying to be helpful.

[McPammy]

Well she’s wrong saying below 4 is good enough. It is not. Your TSH needs to be below 2.5 max and much better at 1.00. A healthy persons TSH will be around 1.00. My very senior private endocrinologist explained this to me. He also explained that the NHS set their ranges too wide. This is to do with budgets and keeping people away from hospitals. My GP let my TSH get to 36 before I got any medication to help me. Criminal. I was in a state. If your GP won’t refer you I would ask to speak to the practice manager and say you are considering taking the situation up with PALS. But then again I guess an NHS Endo won’t help either as your TSH is within their poor ranges. Only chance for help would be to go private. I don’t think they can refuse a referral letter to go privately. I went private as I felt abandoned by the NHS. I finally got diagnosed and today I feel marvellous at last.

TUK have a list of endocrinologists you could choose from. Or message me and I’ll give you the details of my private only Endocrinologist.