Feeling Exhausted: Hello, Hope someone out there... - Thyroid UK

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Feeling Exhausted

Sunrise2010 profile image
12 Replies

Hello,

Hope someone out there can help. I have been using T4 & T3 for over 20yrs, due to under active thyroid. However, last year my GP took me of T3 due to high cost. I have felt awful, main problem being ongoing fatigue, feeling cold to the bone even on sunny days, and generally under the weather. I requested a private prescription to purchase T3 from reputable pharmacy in Germany. However, she refuses to give me a prescription, even though she knows how I am feeling. The pharmacy in Germany ships to the UK. Obviously other people are getting private prescriptions. Has any one else had this same issue ? Any help would be appreciated.

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Sunrise2010
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SeasideSusie profile image
SeasideSusieRemembering

Sunrise2010

Your GP cannot take you off T3. You have to be referred to an Endo, it's the endo who makes the decision. If the endo agrees that you have a clinical need and are doing well on T3 and should stay on it, then that's that, your GP cannot go against the Endo's decision.

SlowDragon knows more about this than I do and may be able to point you in the right direction to get your GP to reinstate your T3 until you have seen an Endo.

Sunrise2010 profile image
Sunrise2010 in reply toSeasideSusie

Spoke to my GP who has referred me to Endo. In meantime she has increased my T4, to help with fatigue and sensitivity to cold.

Thank you for your help

SeasideSusie profile image
SeasideSusieRemembering in reply toSunrise2010

Is it the same endo who put you on T3 originally? It needs to be, or a T3 friendly endo. Not all endos agree with T3.

Sunrise2010 profile image
Sunrise2010 in reply toSeasideSusie

No it will be different Endo.as one I saw has retired. I assume Susie that you are on T3. Was your prescription

for hypothyroidism? I have struggled

for years trying to get my thyroid balanced. One stage I was on 250mcg.

Hopefully new Endo will sort it.

Thanks

SeasideSusie profile image
SeasideSusieRemembering in reply toSunrise2010

Sunrise2010

I was diagnosed hypo back in 1975 after 2 years of my then GP telling me I was a young mum and should expect to be tired! Full bio on my profile page but horrendous endo made me very unwell, now add self sourced T3 to prescribed Levo.

SlowDragon profile image
SlowDragonAdministrator

GP should not alter T3 prescription - should refer to endocrinologist

pulsetoday.co.uk/news/clini...

Email Dionne at Thyroid UK for list of recommend thyroid specialist endocrinologists who will prescribe T3. You probably need to see someone privately initially

tukadmin@thyroiduk.org

Roughly where in the UK are you....which CCG area

Some areas are worse than others ...post code lottery

openprescribing.net/analyse...

thyroidtrust.org/a-gp-write...

When T3 is stopped vitamin levels frequently crash right down

Insist GP tests vitamin D, folate, B12 and ferritin

New NHS England Liothyronine guidelines

Note that it says test should be in morning BEFORE taking Levo thyroxine

Also to test vitamin D, folate, B12 and ferritin

sps.nhs.uk/wp-content/uploa...

How much levothyroxine were you on when also taking T3?

How much T3

How much levothyroxine are you currently taking

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

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, best not mentioned to GP or phlebotomist)

If/when also on T3, make sure to take last third or half of daily dose 8-12 hours prior to test, even if this means adjusting time or splitting of dose day before test

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 ultra vitamin

medichecks.com/products/thy...

Medichecks often have special offers, if order on Thursdays

Thriva Thyroid plus vitamins

thriva.co/tests/thyroid-test

Blue Horizon Thyroid Premium Gold includes vitamins

bluehorizonbloodtests.co.uk...

Take your case up with your MP too

theyworkforyou.com/search/?...

Media coverage

thyroidtrust.org/media-cove...

mjauk.org/wp-content/upload...

dailymail.co.uk/news/articl...

medscape.com/viewarticle/90...

Come back with new post once you get full results

TaraJR profile image
TaraJR

Sunrise2010 which CCG do you come under?

Triciatextiles profile image
Triciatextiles

Five years ago my husbands GP stopped his T3 prescribed by an endo. I had fought so hard for him to be prescribed this but it was hopeless trying to get his prescription reinstated. Without T3 he was virtually bed bound most days , T3 gave him back his life. Since this time i have been buying it on the internet from Supplier in Europe. I normally receive the order within about a week. You can buy without a prescription, just fill in the short medical questionnaire which is approved by a doctor then your order is sent . PM me for the supplier details.

Sunrise2010 profile image
Sunrise2010 in reply toTriciatextiles

Thank you for info. I understand how your husband must felt. I have tried to

but it from abroad, however, need Dr prescription which I can’t obtain. Would be really grateful for the pharmacy abroad where you can purchase the T3. How much dies your husband take daily ? I was in 10mcg divided into twice day. Thank you

Triciatextiles profile image
Triciatextiles

Hi - if you send me a private message i will reply as we are not allowed to provide information of suppliers on the open forum.

Sunrise2010 profile image
Sunrise2010 in reply toTriciatextiles

Please let me

Know where I send a private message to you. Thank you. I could send you my e mail

via this site. However, it would be on view.

Sunrise2010 profile image
Sunrise2010

My email is: <redacted personal email address>

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