URGENT ADVICE NEEDED: Hello to all here. I would... - Thyroid UK

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URGENT ADVICE NEEDED

candi1 profile image
20 Replies

Hello to all here. I would be very grateful for any advice about my situation, and thankyou in advance.

A few months ago I did an insulin resistance test with Medichecks and was found to be severly resistant:

Fasting glucose 6.5....ref range 3.9 - 5.8

Fasting insulin 24.9....ref 0 - 10

Fasting insulin resistance index 6.5....ref 0 - 2

I decided to take action and drastically reduce my carbohydrate intake to try and resolve this. I eat no bread, rice or anything of that nature....VERY little fruit ( only very few berries )....what I do eat is organic pasture raised meat, eggs, dairy and organic vegetables...mainly green leafy kind and so far have been feeling MUCH better...and managing to keep my blood gucose down.

I have been taking levothyroxine for many years and have always maintained a TSH level under 1 and have felt ok. Just last week I started getting the most alarming heart palpitations and my blood pressure shot up to between 150 over 85 - 176 over 90.....so much so, that I rang my gp yesterday and he insisted that I go straight to hospital to get this checked out. When they did my blood tests they found my TSH was at 3.44 munit/L

Free t4 was 17.5 pmol

I am worried that it is the high TSH that is causing me these problems.....would anyone here agree that this could be the culprit and advise me on how I aproach my gp about this.

Once again thankyou for any help with this

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SlowDragon profile image
SlowDragonAdministrator

How much levothyroxine are you currently taking

Do you always get same brand of levothyroxine

Just testing TSH and Ft4 is completely inadequate

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies

Do you have Hashimoto’s

Ask GP to test vitamin levels

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

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

Is this how you do your tests?

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

List of private testing options

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

Medichecks Thyroid plus vitamins including folate (private blood draw required)

medichecks.com/products/thy...

Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test

thriva.co/tests/thyroid-test

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 if go on thyroid uk for code

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

monitormyhealth.org.uk/thyr...

Medichecks - JUST vitamin testing including folate - DIY finger prick test

medichecks.com/products/nut...

Medichecks often have special offers, if order on Thursdays

candi1 profile image
candi1 in reply toSlowDragon

Thankyou very much for your in depth reply.....I am looking through all the options that you suggested ie costs and so forth and will report back.....I am still wondering about the possible connections to my change in diet and reduction in blood sugars possibly having an effect on my thyroid function.

Thanks again

SlowDragon profile image
SlowDragonAdministrator in reply tocandi1

Yes it can.....If diet is very low carb this will often inhibit conversion of Ft4 to Ft3

As NWA6 says ....next step get full testing see what is going on

candi1 profile image
candi1 in reply toSlowDragon

Yes....it is VERY low carb.....only very high quality meats , healthy fats and organic veg. I must say that (apart from the recent thyroid issues ) I have been feeling amazingly good with this way of eating....and it has sorted out a host of other issues ie. all my allergies have cleared up, skin issues cleared up, digestive issues cleared up etc etc

I will be getting tests done

candi1 profile image
candi1 in reply toSlowDragon

Sorry....I forgot to add...I'm on 100 mcg Levothyroxine

helvella profile image
helvellaAdministrator in reply tocandi1

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NWA6 profile image
NWA6 in reply tocandi1

And how long have you been on 100? It’s not unusual for us to need more as time goes by and either the thyriod deteriorates or the Levo ‘interferes’ with our natural production.

I think I need a raise every 6-12mths in the early years. What was the range of that FT4 result?

candi1 profile image
candi1 in reply toSlowDragon

Results in....did the thyroid ultravit plus folate with Medichecks, results as follows

TSH 3.93 ref 0.27 - 4.2

Free T3 3.4 ref 3.1 - 6.8

Free Thyroxine 16.9 rdef 12 - 22

Thyroglobulin ab 10.1 ref 0 - 115

Thyroid Peroxidase ab 25.8 ref 0 - 34

Folate 4.8 ref > 2.9

Vit B12 active 120 ref 25.1 - 165

Vitamin D 146 ref 50 - 200

Ferritin 142 ref 13 - 150

CRP HS 4.1 ref 0 - 5

I am waiting for results to update status with fasting insulin levels, see if my insulin resistance has improved at all . And also waiting for results of iron deficiency...I know that my ferritin looks ok but that doesn't indicate serum iron....so will update on those two as soon as I get them.

Any insights most appreciated with these results.....As expected doctors lab notes telling me all is just perfect...........LOL

SlowDragon profile image
SlowDragonAdministrator in reply tocandi1

Results show you are under medicated and very poor conversion

Ft4 only 49% through range

Ft3 only 8% through range

Helpful calculator for working out percentage through range

chorobytarczycy.eu/kalkulator

Initially getting dose increase first step

But that’s unlikely to improve very poor conversion

Likely to also need T3 prescribed alongside levothyroxine

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

SlowDragon profile image
SlowDragonAdministrator in reply tocandi1

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 Dionne at

tukadmin@thyroiduk.org

candi1 profile image
candi1 in reply toSlowDragon

Thankyou so much ....I emailed Dionne straght away.....My Gp thinks that I am a neurotic busy body and has not even seen fit to refer me to an endocrinologist yet and I have been on levo for years with my medication going up and down

candi1 profile image
candi1 in reply toSlowDragon

Hello ....I did as you suggested.....printed out articles that Dionne kindly sent to me. Armed with all these and my blood results....my GP said "all in normal range" and "No endocrinologist would be interested in seeing you"....!!!!!!!!!! I couldn't believe what I was hearing. So, am I to believe that most of us have to pay to go private.....I am way beyond being absolutely furious......is this just MY GP who is beind an A...... or is it all of them ?????

I also have high CRP HS 4.8.....still got high fasting insulin 16.2 although I have managed to drop it down from 24.9 in three months with diet....I am on low income at the moment due to covid and have no clue how to afford a private consult .......even then , it would appear that it can be a bit hit and miss ???

SlowDragon profile image
SlowDragonAdministrator in reply tocandi1

Obviously low carb seems to have dramatically affected your uptake and conversion of Levothyroxine

You could try different GP

Ask for 3 month trial of 25mcg dose increase in levothyroxine

Or book to see endo private

At least now we have list of recommended thyroid specialist endocrinologists

I went through 5 others before finding good one!

Roughly where in the UK are you

candi1 profile image
candi1 in reply toSlowDragon

I'm in London....I had a look at the list and many or most are well away from me but I will travel if that is what it takes......you mentioned messaging me with name of doc you had luck with.....near London ??

NWA6 profile image
NWA6

Didn’t someone on here point out that a low carb diet can be detrimental to conversion? I mostly follow a low carb diet, it’s one of the best ways for me to stop those peaks and troughs so for you I’d say carry on but you may need an increase in Levo but really you need an FT3 test to show how your conversion is.

candi1 profile image
candi1 in reply toNWA6

Thankyou....yes I am definately going to stick with the low carb diet. I think that staving off diabetes and inflamation as much as possible is SO important.....then working out how to keep thyroid hormones under control.

All this is just so difficult when you have no support from your GP, I hardly dare even mention the diet because the GP instantly assumes that one is some kind of nutcase ie we should all be eating 'healthy grains, beans....less red meat and healthy fats' !!! etc etc.........if they just checked insulin levels instead of blood glucose they could wipe out more than half of latent diabetes right now.....instead of waiting till the diabetes diagnoses is made and it's too late to do anything about it. It is SO frustrating.

I am looking at all my options for getting testing done

NWA6 profile image
NWA6 in reply tocandi1

Yes I really agree with you, I started off about 12yrs ago with Zoe Harcombe and then evolved into this low carb way of life. It fits with gluten free aswell but yes people think I’m mad or ‘on a diet’ 😩 For instanced yesterday for me was garlic kings prawns and half a bag of mixed veg and my work colllegues thought it was just the strangest thing, asked me what’s wrong with a ham sandwich! Lol

Later at tea I had a mushroom omelette and then later still i was hungry so I had some pork belly. I also have a stash of dark chocolate in the freezer for cravings and I just can’t give up my 1/3 of a teaspoon in my decafe coffee, which I top up with double cream 😊

But anyway I’m getting sidetracked. Yes I think it down regulates conversion but mine was f**ked anyway so no big loss for me. The benefits our way the negatives and that’s all we can live by.

candi1 profile image
candi1 in reply toNWA6

Sounds like my kind of day LOL

Bellazzurra profile image
Bellazzurra

Hello candi1, lots of good advice here that should help you in the immediate. If you haven’t already done so, I’d like to recommend you read “The Paleo Approach” by Sarah Ballantyne. She’s a scientist and as such, her book is firmly grounded in science. You’ll find a lot of knowledge and details about how diet and lifestyle play into various diseases, especially autoimmune diseases. She has several sections where she talks about blood sugar issues and various hormone imbalances. I can’t stress this enough as I believe it will help you in the long-run. I was recently diagnosed with Graves’ Disease and the guidance her book provides has helped me a great deal. Sending you my very best wishes x

candi1 profile image
candi1 in reply toBellazzurra

Thankyou for your advice and kind words....I will check her out

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