Dr Myhill on wrong UK thyroid ranges and how to... - Thyroid UK

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Dr Myhill on wrong UK thyroid ranges and how to determine if you have an issue - may be helpful to you

martinajane profile image
27 Replies

Some of you may be interested in Dr Myhill talking about the thyroid. If you go on her website and in the search bar type thyroid.She has a page on persuading the GP to do a thyroid test, how the UK TSH range should be changed, and other information such as some people need to run at the higher normal range.

You may be told by your GP your TSH is within range so they won't test the T3 or T4. But don't listen to the symptoms you experience. She talks about this.

There is more than one page, so make sure to read all pages by searching "thyroid".

She can do the tests and let you know her opinion, which is charged for. She can suggest what dosages, and I suggest this reading because she seems to look beyond what a GP is willing to do. If anything you may be interested in the reading and find out more, it's free information.

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martinajane
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SlowDragon profile image
SlowDragonAdministrator

Welcome to the forum

You will see thousands of U.K. patients forced to test privately to make progress

For full Thyroid evaluation you need TSH, FT4 and FT3 tested 

Also both TPO and TG thyroid antibodies tested at least once 

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

About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high thyroid antibodies 

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.

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

20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis 

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

Recommended that all thyroid blood tests early morning, ideally just before 9am and 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

bluehorizonbloodtests.co.uk...

If you can get GP to test vitamins then cheapest option for just TSH, FT4 and FT3 and includes BOTH TPO and TG antibodies -£29 

randoxhealth.com/at-home/Th...

Monitor My Health also now offer thyroid and vitamin testing, plus cholesterol and HBA1C for £65 

(Doesn’t include thyroid antibodies) 

monitormyhealth.org.uk/full...

10% off code here 

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

NHS easy postal kit vitamin D test £31 via

vitamindtest.org.uk

Only do private testing early Monday or Tuesday morning. 

Link about thyroid blood tests

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

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Symptoms of hypothyroidism 

thyroiduk.org/wp-content/up...

helpful calculator for working out percentage through range

thyroid.dopiaza.org/

Eg Medichecks results

healthunlocked.com/search/p...

martinajane profile image
martinajane in reply toSlowDragon

Many thanks!

TaraJR profile image
TaraJR in reply toSlowDragon

SlowDragon I know about the TUK discount codes for home blood tests. But I've wondered of TUK gets a benefit from having arrangements with these companies?

SlowDragon profile image
SlowDragonAdministrator in reply toTaraJR

Don’t know

Suggest you ask lynmynott on private message

RedApple profile image
RedAppleAdministrator in reply toTaraJR

TaraJR, You can find out about any financial benefits that TUK receive by looking at their Annual reports. thyroiduk.org/annual-reports/

Jaydee1507 profile image
Jaydee1507Administrator

The unfortunate thing with Dr M is that she can no longer prescribe. Also her list is rarely open to new patients.

You can email info@thyroiduk.org for a list of Endocrinologists.

Private blood tests are available: see link for companies offering private blood tests & discount codes, some offer a blood draw service at an extra cost. thyroiduk.org/help-and-supp...

The cheapest test currently available is from Randox Heath which includes antibodies if you're OK with finger prick tests. randoxhealth.com/at-home/Th...

There is also a new company offering walk in & mail order blood tests in Crawley, Hove and Reigate areas. Check to see if there is a blood test companies near you. onedaytests.com/products/ul...

martinajane profile image
martinajane in reply toJaydee1507

Many thanks!Yes unfortunate about Dr Myhill, but her website still has good info for someone learning basics.

Jazzw profile image
Jazzw in reply tomartinajane

Dr Myhill is great, but so is the website behind this forum. :) Thyroid UK is a charity and there’s a wealth of information on its webpages. thyroiduk.org/

I often wonder whether people don’t always realise there’s more to Thyroid UK than this forum? Well worth a peruse, not least because there are lots of discounts available for private thyroid blood testing.

Anthea55 profile image
Anthea55 in reply toJazzw

I totally agree with both of you. Thyroid UK is excellent and I often consult it.

Dr Myhill's site is also excellent and is more wide ranging. Plenty about the thyroid and many other pages about other aspects of health.

I've just discovered from Dr Myhill's site that - "It can be difficult to distinguish between pain due to GORD and pain due to angina. If in doubt consult your doctor! What usually gives the game away is exercise - this makes angina worse but should have little effect on GORD". Which is useful as I've had an ache in the middle of my chest which I don't think is a heart problem, but it could be - I'm working on it.

martinajane profile image
martinajane in reply toAnthea55

I have had pain in my chest on/off some years back too. Thinking it was another ME symptom. In the centre ribs it was. But then I read it (may) be ....Costochondritis.Although the NHS gives causes that never fit. I only had M.E and was not able to do anything, and wasn't coughing. So I decided it was probably that any way. It went away eventually.

But then I've had other things, like where I can't take in full breaths and reached my diaphragm limit, again didn't know the cause and now looking at blood work from years ago said I had high red blood count (and following years) with low oxygen levels. I queried GP at time for RBC being over range and oxygen being below range. Of which they didn't call me about, I just spotted it. These by the way on regular blood test. And GP said nothing to worry about/investigate. She may be right as she's the expert but then again if I'm low in oxygen, yet my RBC is high that didn't sound right.

So did more research myself years later only to find potential cause was ME. Due to low oxygen, meaning I am in an anaerobic metabolism (also racing heart) and that state occurs when there is not enough oxygen (in strenuous physical work/excercise - which of course I did none of, and hardly moved due to severe M.E). Explaining also the pain and fatigue from lactic acid, and delayed lactic acid build up - delayed symptoms of strenuous activity where there was none.

Anyway my point is I was wondering what caused my inability to take full breaths and now I think I know the cause, although can't be certain as I'm not an expert doctor. But GPs have no time or ability, it maybe know better, not to tell me why my range is below normal for oxygen, and my RBC is above normal range - for years.

Now I think it was like that being stuck in anaerobic state, and more RBC to compensate for lack of oxygen to cells.

I still don't know because I read that high RBC can cause several symptoms of ME, so I didn't want it contributing to my pain and fatigue, and I didn't know if it was or wasn't. Because the GP didn't think it was relevant, and so I still don't know if someone goes slightly outside of the ranges whether it may or may not contribute to more M.E symptoms. I just want and wanted, a doctor who can be straight with me rather than just brushing me off if I ask nicely how far outside a range does it take to get symptoms, or in the case of low oxygen, cause my M E breathlessness and the other symptom of inability to take full breaths (which by the way seems to last ages and is quite scary because you can't physically push your lungs out any further and they go out half the amount than they used to, so you can only take half breaths and speed up breathing as you don't get enough oxygen taking half breaths). Of course I also get things like racing heart, pounding hard. And again this may be due to lack of oxygen. ECG obviously didn't show it because symptoms come and go, you can't plan to have certain M.E symptoms on the day, or by hour to hour I should say.

martinajane profile image
martinajane in reply toJazzw

I did not know this. I have never gone beyond this forum to the website you refer to, and only just arrived here! Thanks

Eliota profile image
Eliota in reply toJazzw

Ooh great to know! Thanks

radd profile image
radd in reply toEliota

Eliota,

Dr Sarah Myhill is listed as a medical adviser to Thyroid UK together with Dr Johannes W Dietrich.

(The third medical adviser was the much loved Dr John Midgley who recently passed away.)

JAmanda profile image
JAmanda

so she’s quite keen that we take thyroid meds with food - I thought simply everyone disagreed with that?

drmyhill.co.uk/wiki/Thyroid...

RedApple profile image
RedAppleAdministrator in reply toJAmanda

If you mean this bit: 'Thyroid hormones should be taken with food - he observes that cravings can be triggered by thyroid hormones on an empty stomach', she's referring to Dr Kenneth Blanchard's book, so not necessarily her own opinion? 

SilverSavvy profile image
SilverSavvy in reply toRedApple

I find the food thing really interesting. I've never taken my levo with food (always take it first thing with water and wait half an hour min for anything further) but if I don't eat something within one hour, I definitely get a bit 'whizzy', get stomach acid and also start craving a big meal. If I hit the window right, I can make do quite happily with a smallish breakfast. Banana seems to really help at that time of day...maybe it's the potassium? I also start craving carbs about 4pm but I think that's hormonal and fairly normal. Doesn't happen if I've had all my vits and eat a protein rich lunch. I'd be interested to see how other people manage the diet/craving thing...I have about three stone to lose. All of which went on in the years I was undiagnosed and without levo :(

martinajane profile image
martinajane in reply toSilverSavvy

You mention sometimes craving carbs (sugar). Maybe you like the banana because it's high in sugar?

martinajane profile image
martinajane in reply toSilverSavvy

Energy dips 3-4pm so we crave carbs for energy - quick sugar release

Ukie profile image
Ukie in reply toSilverSavvy

That’s interesting. I had been having chest/abdomen pains and the dr diagnosed high stomach acid. I was very surprised and a little sceptical due to reading about low stomach acid when hypo. Anyway, Omeprazole seems to have fixed it 🤞and I’m weaning myself of it atm. I always take my Levo in the middle of the night, so no food or drink within hours either way. I did try splitting the dose at one point, but it didn’t seem to make a difference so I went back to taking it in the night. Maybe I should change how I take it?

SilverSavvy profile image
SilverSavvy in reply toUkie

I think other folk would know more than me (having been doing this longer) and I am one of those who normally have low stomach acid. But as I titrate upwards (100 as I write) I definitely start getting stomach acid now if I leave it longer than an hour to eat something post meds. I have a friend who takes hers at night and always has stomach acid in the morning so, like you, is on the Omeprazole to combat it.

That said, if I eat TOO soon after, I also don't seem to convert it into energy. (T3 I suppose.) And, following Isabella Wentz, I don't eat milk/calcium first thing either so as to help me absorb the dose I'm given. Which is a bit of a bore when I want to have cereal. Still, each of us is different so I guess we just have to experiment with what works for us. Good luck getting your balance right. Work in progress for me until I get up to a dose that really stabilises my symptoms.

One of the best bits of advice I ever got was from guys on this forum about vitamin optimisation. For me it works just as well as the meds. One helps the other.

knitwitty profile image
knitwitty in reply toJAmanda

Just read that in the link, am quite surprised by the suggestion of taking thyroid meds with food I thought that was a complete no . I'd be interested in the views of slowdragon, Diogenes , and others.

RedApple profile image
RedAppleAdministrator in reply toknitwitty

The thing about taking without food is to ensure maximum absorption. Taking with food could mean potentially big fluctuations in how much you absorb daily, depending on what food you take it with each time.

If you could guarantee to take it with the exact same food every day, then the dose you need would eventually adjust accordingly. e.g. without food 100mcg is fine, but with food, you might need to increase to 112 or 125mcg.

The problem is being able to ensure the exact same food every day. Might be possible most of the time, but what about when you're away from home (holiday abroad, in hospital etc).

I've often wondered whether taking with food might work better for me, as I'm unable to tolerate levo in one dose, so have to split dose. Maybe taking with food would avoid that. But then I wonder what food to chose that I can guarantee to always have available!

knitwitty profile image
knitwitty in reply toRedApple

Thanks for responding RedApple, it makes sense to me to take meds on an empty stomach, it just seemed strange that someone was advocating something different. Especially as there was no guidance on the type of food being suggested. :)

RedApple profile image
RedAppleAdministrator in reply toknitwitty

As Dr Myhill was referring to something in Kenneth Blanchards book, maybe there's more info in the book. ( I'm not buying it to find out though 😊)

martinajane profile image
martinajane in reply toknitwitty

Myhill - mimic the normal circadian rhythm

highest levels of thyroid in the morning which then decline over day.

Glandular products are best absorbed under the tongue

absorption is blocked by caffeine, oestrogen, proton pump inhibitors, and statins.

Minerals such as iron or calcium and foods including gluten, dairy and sugar (not permitted on a PK diet!) block absorption.

Whilst she doesn't say here to take with food or not, if someone is not consistent and taking with say toast (with gluten) or has a coffee (caffeine) with it, etc, maybe it's worth mentioning? 🤷

But then I found this she says

Absorption of thyroxine varies with food. It does not matter very much if you take the thyroxine with or without food, so long as you do the same thing every day.

By same thing, I think she means the type of food which has already been alluded to on this forum, which food is best to get anywhere. Certainly not a yogurt, bread (as going on holiday it's harder to get gluten free bread), anywhere that serves sugar on something like on porridge. I'm overthinking this! I don't even take thyroid medication. Just trying to be helpful.

knitwitty profile image
knitwitty in reply tomartinajane

Thank you for your comments. :)

KateJS profile image
KateJS

thanks this is very helpful. A friend of mine has seen Dr Myhill and speaks highly of her. I may well check out her services if I don’t get anywhere with my Endocrinologist referral.

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