Hello folks: I come to your forum via the B1... - Thyroid UK

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Treesong2023 profile image
10 Replies

I come to your forum via the B12 Deficiency Forum. Where i got tons of sound advice and help. I am not diagnosed with anything Thyroid related - but thats the test track i am on...

My story starts about 6/7 years ago when i developed increasing fatigue, leg cramps, dry skin and brittle nails. Most recently ( 3 years ago) cold intolerance ( 4 layers in Tescos!)feeling depressed and lazy, and also..even more worryingly ...peripheral neuropathy? Having had loads of tests, and procedures most cancers were ruled out. My GP sort of said, what you have isnt likely to kill you, its a "live with" condition. So, suffice to say, i looked for answers myself, hence joining the B12d Forum. As day by day things get worse and worse...

However, i found it wasnt B12d after self injecting B12 from Germany, and a year of testing. When my eyebrows and hair thinned and weight gain started this year, I knew i needed to look further. My GP said it was probably anxiety. So, I used ChatGPT to try and match my symptoms to a common cause = the main answer was my Thyroid or immunological issue. But looking back at past results I found I have had several bordeline TSH (low) results and 2 well below level FT3 blood tests.

I am wondering if this pattern of symptoms has been experienced by any folks here?

As my set of symptoms are a funny mix!

All and any comments, or pointers welcome. I send you my thanks in advance.

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Treesong2023
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SlowDragon profile image
SlowDragonAdministrator

welcome to the forum

Please add most recent results and ranges

What time were tests done

First step is to get FULL thyroid and vitamin testing done

If GP is amenable they might do most

Otherwise test privately

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

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, only drink water between waking and test and last dose levothyroxine 24 hours before test

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

On T3 - day before test split T3 as 2 or 3 smaller doses spread through the day with last dose 8-12 hours before test

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

Testing options and includes money off codes for private testing

thyroiduk.org/testing/

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Only do private testing early Monday or Tuesday morning.

Link about thyroid blood tests

thyroiduk.org/testing/thyro...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Symptoms of hypothyroidism

thyroiduk.org/signs-and-sym...

Tips on how to do DIY finger prick test

See detailed reply by SeasideSusie

healthunlocked.com/thyroidu...

Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee

Treesong2023 profile image
Treesong2023 in reply to SlowDragon

SlowDragon - great name. Thank for that list of info. It has already helped me, as my iron levels are always at borderline and below! and I have had two Vit D deficiency test come back as well below level. Pardon my grammar here.

I have been working through the various causes of my symptoms for three years now. Before that, I never went to the GP. I never ever thought of my thyroid, and my GP only checked last year when i pressed. Sorry, I am going on here . I just feel so relieved to have someone...listening.

THANK YOU K.

SlowDragon profile image
SlowDragonAdministrator in reply to Treesong2023

So are you working on improving low vitamin levels

How low since you tested and how low was vitamin D

How much vitamin D are you currently taking

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 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 thyroid issues, 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

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 thyroid issues 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...

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...

Interesting article by Dr Malcolm Kendrick on magnesium

drmalcolmkendrick.org/categ...

Vitamin K2 mk7

betterbones.com/bone-nutrit...

healthline.com/nutrition/vi...

SlowDragon profile image
SlowDragonAdministrator in reply to Treesong2023

low vitamin levels suggests poor nutrient absorption……low stomach acid ….hypothyroidism

my iron levels are always at borderline and below!

What are most recent results

What’s been prescribed

greygoose profile image
greygoose

Hi Treesong2023, welcome to the forum. :)

Thyroid symptoms always are a funny mix. The reasons for that is that thyroid hormone is needed every single cell in the body to function correctly. If there's not enough to go round, some cells go short and therefore cannot function correctly. So, the symptoms can occur anywhere and everywhere, and are non-specific - i.e. they could possibly be caused by a lot of other things.

There are over 300 known symptoms of hypothyroidism but you don't have to have all of them to qualify. Every hypo has his/her own personal symptom list. So, never believe a doctor when he says 'your symptoms are nothing to do with your thyroid' because they probably are! It's just that doctors know nothing about symptoms.

Ask yourself which is the most likely scenario:

- you have thirty six diseases with one symptoms each - as doctors seem to think or

- you have one disease with thirty six symptoms.

I know which one seems more likely to me! :)

Treesong2023 profile image
Treesong2023 in reply to greygoose

That's exactly what I think as well...I can just feel it..in me..all over. But i am not very good at challenging GPs :-(

GP says exactly what you say GrayGoose, its your age, combination of stuff...and anxiety. I wasnt in the slightest anxious until i had these symptoms start.

Thanking you very kindly. K.

greygoose profile image
greygoose

Doctors, in general, hate diagnosing and treating hypo. And they'll blame your symptoms on just about anything rather than what it is. What they refuse to realise is that most of the things they blame it on are hypo sympsoms, themselves. Anxiety is a hypo symptom, but they won't admit it. As for age, ask him if that's the case, why aren't all the millions of people the same age as you, suffering from the same things?

I got that when all my hair fell out. It's your age, he said. I said, 'now look here, your waiting room is full of ladies my age or older, and not one of them is wearing a woolly hat like to hide their baldness!' He changed the subject. He didn't have a clue what had caused it, and had no intention of trying to find out!

You must question doctors. They're not gods. Most of them are not even very special, just flawed human beings, like the rest of them. And, the majority of them don't even seem to have benefitted much from their time in med school. All they know how to do these days is look at a computer screen and prescribe dangerous drugs to treat what the think might be wrong with you! Without really trying to find out what's wrong with you. And they don't even seem to care. They see us all as stupid, attention-seeking hypochondriacs, and look down on us. Why would you put up with that? You wouldn't if it were the garage mechanic servicing your car, so why would you with a doctor? Try seeing doctors as not very good garage mechanics - and, what's more, sitting there in their underpants!

greygoose profile image
greygoose in reply to greygoose

And socks!

Treesong2023 profile image
Treesong2023 in reply to greygoose

😀😆😍😜😀😍😆😜😘

So, totally true!

But until one of my Ex's who ran a garage told me their tricks i never challenged a Garage! He's well in the past btw. :-)

Thanks xx

PS..i wear lots of hats..!

greygoose profile image
greygoose in reply to Treesong2023

You're very welcome. :)

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