deprived on NHS

[Nilly-batu16]

After long months of trying to get T3 from GP then ICC- then Ombudsman:: Once again, a No.. Greenwich & sth east ICC is so denying patients:: Ombudsman said, i have to have new evidence.. crazy

[SlowDragon Administrator]

465 prescriptions in South East London last year

Typically that’s 6 prescriptions per person per year

openprescribing.net/analyse...

You will need NHS endocrinologist to agree you have clinical need

Have you had Dio2 gene test

Specialist thyroid doctors and endocrinologists who will prescribe T3 ……lincluding some on NHS

healthunlocked.com/thyroidu...

[Nilly-batu16 in reply to SlowDragon]

i have seen nhs endo, & agrees with private endo, i have sent copy of Nhs endo to ombudsman: originally i was given t3 some yrs ago @ nhs hosp,but the endocrine doctor went private, the one that took his place, said No, ( it was @ the time very exspensive,) since i continued with the doc that went private..i have not had a DIO gene test??? Can you tell me abt that please.

[SlowDragon Administrator in reply to Nilly-batu16]

i have seen nhs endo, & agrees with private endo, i have sent copy of Nhs endo to ombudsman

How recently did NHS endocrinologist agree you need T3 prescribed

What’s the reason for your hypothyroidism?

Dio2 gene test

thyroiduk.org/deiodinase-2-...

regeneruslabs.com/products/...

Blue horizon test

bluehorizonbloodtests.co.uk...

[Nilly-batu16 in reply to SlowDragon]

last year, end of August..

[Nilly-batu16]

yes Hypothyroid

[SlowDragon Administrator in reply to Nilly-batu16]

Is your hypothyroidism autoimmune?

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 (Hashimoto’s or Ord’s thyroiditis)

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 and last dose levothyroxine 24 hours before test and day before test split T3 into 3 smaller doses spread through the day with last 1/3rd of dose approx 8-12 hours before test

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

When were vitamins last tested

What supplements do you take

Please add most recent results

Are you on gluten or dairy free diet

do you always get same brand levothyroxine at each prescription

[Nilly-batu16 in reply to SlowDragon]

Autoimmune: Yes B/test always earliest, in mrng,no vitamins b4 for a week:: i have followed all the advice from your forum: B12 vit D & k2 & gluten free.. My results are fine with T3: & look @ forum news every week: thnku Advisors!

[SlowDragon Administrator in reply to Nilly-batu16]

If you found benefits on gluten free diet it’s highly likely you might need addition of T3 prescribed as gut function is impaired

Have you tried dairy free diet too?

Do you take daily vitamin B complex too

[Nilly-batu16 in reply to SlowDragon]

yes i take alternate day b12 & b complex 50.. Also a microbiotic complex acidophilus & bifidum for gut: not dairy free yet::

[Nilly-batu16 in reply to Nilly-batu16]

Solgar

[SlowDragon Administrator in reply to Nilly-batu16]

do you test vitamin D twice year and folate, B12 and ferritin at least annually

[Nilly-batu16 in reply to SlowDragon]

yes Annually “one of your recommendations” i use

[SlowDragon Administrator in reply to Nilly-batu16]

and what are most recent results ?

[Nilly-batu16 in reply to SlowDragon]

free T3 5.3. TSH 0.88 Serum T4 12.9 latest mid April 23

[SlowDragon Administrator in reply to Nilly-batu16]

Ft4 looks a bit low. What’s the range on Ft4

and vitamin results and ranges?

[Nilly-batu16 in reply to SlowDragon]

FT4 range:11-21.20pmol/L yes i thought, slightly low, so adjusted 25 up Levo::

Thyroglobulin anti: 17.1

Peroxidase anti:7.2

[SlowDragon Administrator in reply to Nilly-batu16]

no vitamin results?

[Nilly-batu16 in reply to SlowDragon]

not this time, saving for nxt time,

[MTC1 in reply to SlowDragon]

thank you : I find your posts invaluable 👍💕

[Nilly-batu16 in reply to MTC1]

all helps& we must help each other!!

[Nilly-batu16]

In actual fact, i have been on t3 comb for 5 yrs, from nhs endo @ 1st::

[Nilly-batu16]

Thankyou Slow Dragon !!

[janeroar]

I buy my t3 in Turkey when I go there for a few quid. Worth taking a nice trip there or seeing if someone can do that for you rather than jumping through all these hoops and causing so much stress for yourself?

[Nilly-batu16 in reply to janeroar]

thanku, i have done so, but seems so unfair, postcode lottery:

[janeroar in reply to Nilly-batu16]

yes totally unfair people’s lives being made a misery just because some sadists denying them a life saving drug that costs pennies to buy in Turkey and elsewhere.

[Nilly-batu16 in reply to janeroar]

I have again- till mid may, to reply to ombudsman- with any new evidence🤣I will try ( not just for me, but for many:i say don’t give up, (so many, do, oh i’ll just get from abroad), but No::

[janeroar in reply to Nilly-batu16]

good on you for persevering

[SueHG in reply to Nilly-batu16]

ok when you are young but difficult as age creeps up, we trawled 60 pharmacies in crete , now too old to guarantee a trip. Got T3 from an nhs endo recently had to present pages of evidence but only got half the dose I’ve been on for years. She wasn’t happy about prescribing but I’ve been well for 7 years so she had to do it.

[Nilly-batu16 in reply to SueHG]

there you go, this is where it must change: i sent pages & pages to ombusman:: same as you:: Age creeps on, like you say, not so glamorous travelling, & airports & strikes… shouldn’t have to::

[tattybogle]

These may be useful / interesting re. which areas are still being difficult, .plus link to report problems .

thyroid trust T3 news and resources thyroidtrust.org/t3-news-an...

thyroid trust T3 prescribing survey 2022

thyroidtrust.org/uploads/3/...

thyroid trust T3 prescribing reports thyroidtrust.org/liothyroni...

Post from TaraJR , ( who is involved with Improve Thyroid Treatment ITT) healthunlocked.com/thyroidu...

[Nilly-batu16 in reply to tattybogle]

thanku, i may have seen, but will go through it all, thanku tattybogle

[Brightness14]

Which T3 have you been taking.

[Nilly-batu16]

thybon henning

[TaraJR]

Another ICB that refuses to follow national guidance.

If you're on Facebook, join us in ITT Improve Thyroid Treatment group. We've been working with other national thyroid groups including Thyroid UK for 5 years pushing government and NH to clarify the guidance and stop the postcode lottery. Together we've produced 4 major reports which we sent to them and these have been quoted in the House of Lords.

ITT has template letters which include details of all pieces of national guidance and parliamentary statements on T3 that ICBs and drs should be following. I'd hope these could help you.

Meanwhile we await the new joint consensus statement on T3 from BTA/SfE. We believe NHSE is waiting for this before they publish their new guidance.

[arTistapple in reply to TaraJR]

Is this the stuff quoted by Dr. Paul Jenkins in his talk with The Thyroid Trust? This would definitely be ‘new evidence’ for Nilly-batu16 . AND do you know what the qualifications of the Health Ombudsman are? So often this stuff is over-viewed by unqualified civil servants. A qualified person may not even have seen Nilly-batu16 documents. It’s madness to expect patients to have a lot of this info at our fingertips - although clearly many have!

[TaraJR in reply to arTistapple]

Which 'stuff' do you mean?!

[arTistapple in reply to TaraJR]

oops. It was the ‘new’ guidance for prescribing T3, brought about by the patient groups. The ‘stuff’ I thought you guys were working on. Dr Paul Jenkins seemed to give it his wholehearted backing.

[TaraJR in reply to arTistapple]

Ah yes, he was very supportive (and still is I believe) of the work done by the joint thyroid groups. This was back in 2019, and a lot more has been done since. We're still battling away hard, but currently awaiting new BTA/SfE statement which has been probably 18 months of waiting. We assume that will feed into the NHSE refresh of their guidance.

[arTistapple in reply to TaraJR]

Excellent.

[Nilly-batu16 in reply to TaraJR]

j have the guidance from June 219: Do you mean a newer version, or that one???

[TaraJR in reply to Nilly-batu16]

NHSE's latest guidance was from June 2019 'Items which should not routinely be prescribed in primary care'

england.nhs.uk/wp-content/u...

And another NHSE group RMOC Regional Medicines Optimisation Committee produced their detailed guidance on T3 in June 2019

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

We expect reviews of both these to be published quite soon. We assume they're waiting for the forthcoming BTA/SfE statement on T3 first.

[Nilly-batu16 in reply to TaraJR]

thankyou

[arTistapple]

Well done getting/pushing this far!

[TSH110]

awful its criminal

[arTistapple]

If you get a hold of this piece of revised guidance it might help you, even before NHSE agrees to adopt it.