Endocrinologist

[Health-care]

Hi I’ve never been referred to an endocrinologist I have under active thyroid and have done for many years. Has everyone else seen an endocrinologist or is it just if you have an overactive thyroid they refer you ???

[SlowDragon Administrator]

BEFORE seeing any thyroid specialist endocrinologist you need to get FULL thyroid testing done

Links and information in your previous post

Most endocrinologists are diabetes specialists and useless on 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 under 2

When adequately treated, TSH will often be well under 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

Suspect you have low vitamin levels and Hashimoto’s

GP should not reduce dose based just on low TSH

[Pippi39 in reply to SlowDragon]

When you say well under one what should it be? I’m feeling confused at the moment! My GP has reduced dose based on low TSH.

[SeasideSusie Remembering]

Health-care

I was first diagnosed hypothyroid around 1975, never saw an endo until 2002 when GP was completely out of her depth with my symptoms and no changes in Levo helped. Worst thing I ever did was agree to see him, he made me so much worse, hadn't got a clue, I ended up needing to be looked after for 2 years and never worked again. He was, of course, a diabetes specialist.

[Pippi39]

I like you feel confused. My GP has lowered my thyroxine due to low TSH levels. I thought seeing an endocrinologist might help to explain why I am feeling rubbish. But seems that it may not be the right thing? All very confusing!

[SlowDragon Administrator in reply to Pippi39]

Thyroid specialist endocrinologists are as rare as hens teeth

Most important results are ALWAYS Ft3, followed by Ft4

All four vitamins need to be optimal too

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.

New 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...

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)."

(That’s Ft3 at 58% minimum through range)

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



please email

[e-mail]

See Diogenes reply in this post

healthunlocked.com/thyroidu...

the best paper on this that I have seen indicates that a TSH of 0.03-0.5 is best on therapy. Above that is insufficient and below MAY or MAY NOT indicate slight overdosing

academic.oup.com/jcem/artic...

Interestingly, patients with a serum TSH below the reference range, but not suppressed (0.04–0.4 mU/liter), had no increased risk of cardiovascular disease, dysrhythmias, or fractures. It is unfortunate that we did not have access to serum free T4 concentrations in these patients to ascertain whether they were above or within the laboratory reference range. However, our data indicate that it may be safe for patients to be on a dose of T4 that results in a low serum TSH concentration, as long as it is not suppressed at less than 0.03 mU/liter. Many patients report that they prefer such T4 doses (9, 10). Figure 2 indicates that the best outcomes appear to be associated with having a TSH within the lower end of the reference range.

[Health-care in reply to Pippi39]

It seems to be the most complex problem, the sad thing is the people who you would hope to help you also don’t seem to have any clue after all these years you would think drs would be experts on it x

[jimh111]

Try and get hold of your blood test results, you may have online access or you can request them from the surgery.

Most patients do well with a TSH around 1 or 2 but a minority of us require different levels. As you are being referred to an endocrinologist I assume you are having symptoms and your doctor isn't sure how to proceed. Do you have any symptoms and what are they?

[SlowDragon Administrator in reply to jimh111]

Results on previous post....and dose then reduced, despite showing low Ft4 and Ft3

healthunlocked.com/thyroidu...

[jimh111 in reply to SlowDragon]

Thanks. I'm in a bit of a rush latetly so didn't look for previous posts. The fT3, fT4 looked OK and the dose shouldn't have been reduced. The low TSH suggests a problem with the pituitary, call it subnormal TSH or central hypothyrodism it doesn't matter. This doesn't necessarily mean the pituitary is damaged sometimes TSH can just remain low, especially if hormone levels have previously been high.

If Pippi39 felt OK on the previous dose fine but if not the endocrinologist should check out pituitary function or perhaps try liothyronine.

EDITED!

I meant to alert Health-care not Pippi39.

[Pippi39 in reply to jimh111]

I am going to pay privately to see an endocrinologist. GP says that vitamins are in normal range and will not do any further tests regarding thyroid

[SlowDragon Administrator in reply to Pippi39]

So you need to self supplement to improve all four vitamins to optimal levels

Then retest thyroid and vitamins privately via Medichecks or Blue horizon....BEFORE considering seeing any thyroid specialist endocrinologist

Always get full thyroid and vitamin testing done BEFORE any consultation

[Pippi39 in reply to SlowDragon]

Thank you. Advice very helpful and appreciated

[SlowDragon Administrator in reply to Pippi39]

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 under 2

When adequately treated, TSH will often be well under 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

[tromashka in reply to Pippi39]

Yes, I fully agree with Slowdragon. I Went to see a private Endocrinologist. Just wasted my time and a big amount of money. No blood tests suggested, diagnosis done based on presumptions. Hope you'll be able to do your bloods privately beforehand.

[Pippi39 in reply to tromashka]

Thank you. Yes it is expensive so don’t want it to be wasted. I find it shocking that we have to try and work it out for ourselves!

[tromashka in reply to Pippi39]

Yes, it is shocking indeed but we have nothing left but to work around and with the situation. Another shock is that the more we educate ourselves and try to work together with doctors the less they want to hear. Some find it offensive if you dare to speak up and ask questions. So hack #1 all bloods done before the seeing the specialist

#2 lots of knowledge

#3 write down all the questions

#4 dont leave their office till you hear clear answers to the questions.

I had to repeat mine "when will I see you ( the endo) again?"... The doctor responded 3 times and i still didnt have a clue after that. Some skill!

Best of luck and wishes of best health.

[SlowDragon Administrator in reply to Pippi39]

First step

Get full thyroid and vitamin testing

Work on improving low vitamin levels BEFORE seeing any endocrinologist

Retest thyroid levels again once vitamins are improved and optimal

Strictly gluten free diet frequently necessary and is always worth trying

Getting coeliac blood test done before cutting gluten out

[Pippi39 in reply to SlowDragon]

I have had 18 years of being ‘under active’. I never questioned it. Now I realise there is so much I don’t know. I had never been heard of Hashimoto until recently. I have no idea what I am actually classed as now

[SlowDragon Administrator in reply to Pippi39]

About 90% of primary hypothyroidism is autoimmune thyroid disease also called Hashimoto’s

You should have had thyroid antibodies tested at diagnosis....might be in your medical records from back then

If not, antibodies are included in private testing options anyway