Hypothyroidism/Myxoedema: Hi, I'm new here. I... - Thyroid UK

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Hypothyroidism/Myxoedema

Breadcrumb profile image
13 Replies

Hi, I'm new here.

I have been experiencing underactive thyroid symptoms (hair loss, fatigue, dry skin, weight gain, sensitivity to light and heat/cold intolerance) for over the last four years after hitting the back of my head, my pituary gland. I have not had any treatment for my thyroid as my TSH blood results is always in range and therefore I am healthy despite my presenting symptoms. Since mid September I have now been experiencing worse symptoms where my body feels cold and cannot heat up my feet even with thermal socks and under a duvet. I am experiencing chest/arm/neck pains and light headedness. I had a heart angiogram to check if it was my heart but that's perfectly healthy. Everytime I try to do anything my head is light headed, vision can be impaired, headaches at the front of my head and face. Struggling to think clearly and incredibly weak. Sometimes numbness in hand and feet. No appetite, never feel full. Starting to lose weight. I just don't seem to be able to function at all. I'm of the opinion, that my thyroid has hit rock bottom and facing myxoedema but my TSH is in range therefore all doctors think its stress! I don't have the same opinion.

Don't know what to do or where to turn... please help

Many thanks. Jo

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13 Replies
greygoose profile image
greygoose

When you say 'all doctors', who have you seen? Just GPs? Or an endo? Have you discussed a possible pituitary problem with them? We call it Secondary Hypothyroidism. A GP wouldn't know anything about that, but an endo should do, and test the FT4 and FT3.

If you cannot get a referral to an endo, or see a private endo without a referral, perhaps it would be a good idea to get private labs done. You'll find details of private labs here:

thyroiduk.org/tuk/testing/p...

SlowDragon profile image
SlowDragonAdministrator

First thing is, do you have any actual blood test results? if not will need to get hold of copies.

You are legally entitled to printed copies of your blood test results and ranges.

UK GP practices are supposed to offer online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.

In reality many GP surgeries do not have blood test results online yet

Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up. They can no longer charge for printing out, rules changed after May 25th 2018

Can you add most recent results and ranges for TSH, FT3 and FT4, plus have you also had thyroid antibodies tested

Also helpful if had vitamin D, folate, ferritin and B12 tested. Add results and ranges if you have them

Low vitamin levels are EXTREMELY common and need testing

For full Thyroid evaluation you need TSH, FT4, FT3 plus TPO and TG thyroid antibodies and also very important to test vitamin D, folate, ferritin and B12

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or vitamins

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money

All thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH and most consistent results. (Patient to patient tip, not to be mentioned to GP or phlebotomist)

If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).

About 90% of all hypothyroidism in Uk is due to Hashimoto's.

Low vitamins are especially common with Hashimoto's. Food intolerances are very common too, especially gluten. So it's important to get TPO and TG thyroid antibodies tested at least once .

Link about thyroid blood tests

thyroiduk.org/tuk/testing/t...

Link about antibodies and Hashimoto's

thyroiduk.org.uk/tuk/about_...

thyroiduk.org.uk/tuk/about_...

List of hypothyroid symptoms

thyroiduk.org.uk/tuk/about_...

Come back with new post once you have results and ranges. Members can advise next steps

SlowDragon profile image
SlowDragonAdministrator

Head injury can cause secondary hypothyroidism

helvella profile image
helvellaAdministrator in reply toSlowDragon

At which point I usually post this link:

headinjuryhypo.org.uk/

in reply tohelvella

In this day and age this makes for hard reading ….. Christine's story and Jill Mizen's tribute

headinjuryhypo.org.uk/Diagn...

MaisieGray profile image
MaisieGray in reply toSlowDragon

Yes, including "just" whiplash, as well as direct head injury.

SlowDragon profile image
SlowDragonAdministrator

Whiplash can affect Thyroid too, as you may be aware

"Traumatic hypothyroidism—serious trauma to the neck, such as whiplash or breaking the neck, has been linked to the onset of hypothyroidism."

verywellhealth.com/thyroid-...

stopthethyroidmadness.com/c...

bbc.co.uk/programmes/articl...

You need to see a proper thyroid and pituitary specialist, not just some run of the mill endocrinologist

Roughly where in the UK are you?

Thyroid Uk has list of recommended thyroid specialists

please email Dionne on Monday at


tukadmin@thyroiduk.org

Getting full private Thyroid and vitamin testing FIRST before seeing any consultant

Come back with new post for advice once you have results

Breadcrumb profile image
Breadcrumb in reply toSlowDragon

Thanks I live in Kent, will email Monday. 🙂

SlowDragon profile image
SlowDragonAdministrator in reply toBreadcrumb

Improve Thyroid Treatment campaign on Facebook has some info about endocrine centre in Kent, Maidstone I think

Breadcrumb profile image
Breadcrumb in reply toSlowDragon

Hi

I have had some bloods taken with an endocrinologist as set out below:

9am cortisol 289 nmol/L

Prolactin 190

Adj calcium 2.37

Oestradiol 130

LH 11.2 and FSH 22.1 U&E

IGF-1 23.7

Vitamin D 59 nmol/L

FT4 = 18.1

FT3 = 4.6

TSH = 1.54

ANA is mildly positive 1:80 speckled pattern - suggested rheumatologist review.

Any help will be greatly appreciated to understand these results.

Thanks Jo

SlowDragon profile image
SlowDragonAdministrator in reply toBreadcrumb

Sorry you need to add the ranges on all these - the figures in brackets after each result

Each lab has different ranges

Apart from vitamin D which is standardised

Suggest you also put this on a new post so others can see it

Vitamin D is too low. But not low enough for GP to prescribe

Aiming to improve vitamin D to at least 80nmol and around 100nmol may be better . Vitamin D mouth spray by Better You is good as avoids poor gut function. Suggest you supplement 1000iu for 2-3 months and retest.

It's trial and error what dose each person needs.

Once you Improve level, very likely you will need on going maintenance dose to keep it there.

Retesting twice yearly via vitamindtest.org.uk

Government recommends everyone supplement vitamin D October to April

gov.uk/government/news/phe-...

Also read up on importance of magnesium and vitamin K2 Mk7 supplements when taking vitamin D

betterbones.com/bone-nutrit...

articles.mercola.com/sites/...

healthy-holistic-living.com...

articles.mercola.com/sites/...

betterbones.com/bone-nutrit...

Do NOT supplement any vitamin K if you take any blood thinning medication including aspirin

drsinatra.com/vitamin-k2-su...

Vitamin C and bones

healthimpactnews.com/2018/d...

You need folate, ferritin and B12 tested

Plus both TPO and TG antibodies

thyroiduk.org.uk/tuk/about_...

Literally thousands on here forced to test privately to get everything tested

All thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

is this how you did this test?

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies Or vitamins

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

As you are loosing weight you need coeliac blood test before trying absolutely strictly gluten free diet.....especially if antibodies are raised

snookbj profile image
snookbj

Hi dear. Your symptoms sound unbearable!! I agree with others in making sure the right tests are performed. So highly important to getting a proper diagnosis. And with your symptoms there's no errors needed!

In March of this year I was admitted to the hospital for myxodema. Very similar symptoms... To what everyone has experienced. I'm only mentioning this to bring light on how important it is to care for our thyroid!! Never give up hope... Thyroid strong!! Luvs

Breadcrumb profile image
Breadcrumb

Thanks for all your comments but I have seen so many endocrinologist privately and had many bloods taken and told that my thyroid is fine.

My body is now shutting down, blood pressure dropping when i do anything. Light headed, severe chest pains and palpitations doing anything, and now weight falling off me as my stomach is now compromised. And feet won’t warm up at all and they say it’s stress! I’m not stressed, they won’t accept it could be myxodema. Nothing more I can do...

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