Susan

[Lalande]

I am 79 years old and experienced thyroid imbalance earlier this year with quite sudden lack of wellbeing. I had no help from my GP except a text to increase levothyroxine and when I asked for an Endocrinologist referral was told "no , we do it" So I consulted a homoeopath and read up on Hashimoto and adrenal , liver and gut support. So with supplements and lifestyle changes I am making progress and most of all feeling hope. Since then I have discovered that all 4 of my children are unwell with Hashimotos and all experiencing the same lack of understanding and support and to get what they need have sought help privately. Each experience different. But GPs will not prescribe T3 even when it is demonstrated that it is needed, and for one will not prescribe levothyroxine, despite symptoms and a strong family history, which indicates the MTHFR gene.

[Rapunzel]

I think that you're going to have to share your wisdom with your children. Yes, it's absolutely distgusting that thyroid issues are so misunderstood, poorly treated and misdiagnosed by the NHS and also some private endos...if we wait for them to sort their addled brains out, we will be the oneds who suffer. In my opinion, this is the only way tyou can hope to help your children. Good luck and get them all to sign up for TUK

[SlowDragon Administrator]

Welcome Susan

You will need to get full thyroid and vitamin testing done

Often necessary to test privately if GP unhelpful or lab won’t test T3

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)

If already 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

Essential to test vitamin D, folate, B12 and ferritin at least annually

What vitamin supplements are you taking

As you have Hashimoto’s are you on gluten and/or dairy free diet

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...

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...

Tips on how to do DIY finger prick test

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

Increasing numbers of patients are prescribed T3 alongside levothyroxine and some manage to get on NHS

List of thyroid specialists and endocrinologists who will prescribe T3

healthunlocked.com/thyroidu...

[SlowDragon Administrator]

But GPs will not prescribe T3 even when it is demonstrated that it is needed,

GP is not allowed to initiate T3

Initially prescription must be via endocrinologist

If you can see one that’s private and NHS…..get started on T3 privately and then transfer to NHS list

Worth considering getting Dio2 gene test

thyroiduk.org/deiodinase-2-...

Over 63,000 prescriptions on NHS for T3 in England in last year

openprescribing.net/analyse...

[shaws Administrator]

I am sorry that you are having 'symptoms' increasing again.

I am very fortunate that my surgery has a new doctor and he has already adjusted my dose of T3. I still feel well and am symptom-free.

Previously when prescribed T4 (levothyroxine) it did not improve my health,. In fact I felt worse as It caused me to have awful palpitations - during the night - and I had to wrap around my neck an ice-cold scarf from fridge and sipped ice-cold water to reduce palpitations.

I had read about TUK's Adviser who was Dr John Lowe from USA who was a doctor and scientist and expert on the use of liothyronine (T3). He took T3 himself. There is still information on the internet.

Unfortunately he had a bad fall that caused his demise and he is missed by many people but his site is still on the internet..

tpauk.com/main/article/dr-j...

[McPammy]

Unfortunately lots of GP’s do not understand thyroid conditions and in my experiences nor do some Endocrinologists within the NHS. It really is a minefield. I went private only after years of NHS failings. My GP admitted on two occasions I may as well be talking to a plumber he knew that little on the subject. I also did the DIO2 gene test which came back positive. My only saviour was going with private only who does telephone , zoom or face to face consultations so no need to travel as long as he has your latest bloods and an initial Gp referral letter that’s good to go. If you’d like his details please private message me.