Update on Endo and WLAMS

[serenfach]

Re the Endo who was determined to take away my T3 whilst all I wanted was a blood test to include T3. After an exchange of letters, he phoned this morning. He had back pedalled so far he was out of site. He agreed T3 was vital, he agreed testing the full TSH, T4 and T3 were needed to make a positive and accurate diagnosis, he said the prescribing of T3 was on the rise, which was a good thing, and told me they were working on a slow release T3. I knew this. He is going to write to my GP to help get the T3 tested in future.

He ignored that the GP is not allowed to order a T3 test. Never mine, I am fighting that one on another front. So a positive phone call, maybe he had actually read the letter and all the research links I had given him. No, I dont think so either

Then an email back from WLAMS (Welsh blood test bods in charge), to whom I had sent a four page letter detailing why testing T3 was vital.

"In the scientific world experts may have differing opinions on what is right or wrong therefore we follow the NICE guidance (NG145 in this case) when we provide advice on appropriate testing.

As previously stated, in patients on combination therapy, if TSH is low or suppressed, free T4 or free T3 should be measured and it should be stated on the laboratory request that the patient is taking liothyronine.

As for who can request free T3, any appropriate healthcare professional may, when it is clinically indicated. FT3 can be requested if appropriate clinical information is provided."

They completely ignored that the GP is not allowed to ask for T3 to be tested, and there is nowhere on the lab request to ask for it. Even if your TSH is 0.01, they do not test T3. So they are breaking their own protocols.

"Unfortunately we are unable to assist any further with this matter, if you are still unhappy you may contact the Ombudsman."

Oh how gracious of you! First I will go after the labs and ask them what penalties there are if they break protocol, then go to the Ombudsman. I have found in the past they are as useful as a chocolate teapot. Never mind, I have a big spoon to stir!

Right, off to cuddle a sheep to calm me down.

[SlowDragon Administrator]

well done for pursuing this

Carry on wearing them down with facts, figures and evidence

[Charlie-Farley]

Serenfach….

Go girl! Take no prisoners! You know more than these duds anyway.

[Brightness14]

Have you written to your AM. My Niece is an AM in Wales and our whole family has autoimmune problems including Thyroid.

[Bertwills in reply to Brightness14]

Hello, I’m sorry I don’t know what an AM is! Could you explain please? They sound interesting. Thank you

[Brightness14]

Sorry, yes it's a Welsh MP. Academy Member.

[helvella Administrator in reply to Brightness14]

Now called MS - Members of the Senedd - I believe.

[Brightness14 in reply to helvella]

Yes, thank you I don't keep up with things Rhianon is a MS for Islwyn. I just thought that she may help the Thyroid cause.

[birkie]

This is total madness 😡Here's my experience with my surgery recently,.. First I WAS on T3 therapy (endo as removed it 27th Dec 2023😡)

I was due to have bloods in Nov 2023..i had them explaining I was on T3 therapy, get the results back and my TSH was 11.59 and my T4 was 2.50.

The report stated.. Now hypothyroid again (this is due to absorbtion issue) could this be malabsorbtion? See endocrinologist, T4 very low.. Good god how dumb are these people.

I went in to try to explain to the receptionist what hadn't been done... THE BLOODY T3!!! as I'm on T3 therapy ONLY that should have definitely been done, the T4 is meaningless 🤦‍♀️.

Receptionist couldn't give a flying you know what, it took over 3 wks to get someone to listen to me, I had arguments with reception over the T3 not being done, and there answer from gp was "T3 is not require when doing a thyroid blood test🤦‍♀️... So I had to tell my own gp... Who I'm sure as gone to university to study, that..." IF A PATIENT IS ON T3 THERAPY T3 SHOULD BE TAKEN".

you cannot rely on T4 as the patients T4 will be low.... Because they are not taking any T4🤦‍♀️... Honestly it can't be this hard to explain it to a gp😡

Upshot, she eventually agreed to a T3 blood test....Good god I'm exhausted 😤😤

[serenfach]

If you get your blood results from the lab, it may give the lab person in charge email or phone number. They dont think the patient will see this. Email or phone and ask to be sent the protocols for blood tests for thyroid. You may find as your TSH was so high and out of range, they are supposed to do T3 and T4. I hope nudging them to abide by their own protocols will mean they get reminded what they are supposed to do, and to do it in the future.

We can but hope. They have rules and do what they like, but we have a voice, and hopefully can nudge them. If everyone on here made a fuss at the blood test labs, maybe they would remember why they are there, and not ignore us.

My AM member (who I have known for years) is not much use, nor is my MP who did at least try but falls at the first hurdle.

[Lottyplum]

Rock on!! Someone with balls! I think after years of nonsense from the medical profession, we grow them big+strong!!😆. Balls, I mean!