Genetic testing

[NWA6]

So my NHS Endo tried to pass the buck with my need for T3 but the geneticist is not interested. I only had one appointment and he never spoke about T3 and I was playing the game whereby we let the medics think they’re in charge so I was waiting for him to join the dots while looking at my 10yr history with loads of data and 6 clear results that show no matter how much T4 I take my T3 hardly rises but is within range. But alas he didn’t say anything to me and yet in his referral letter to this geneticist he said ‘we do not offer T3/T4 combination therapy in our department’ So he was obviously thinking about it.

At least my time won’t be wasted travelling to a Dr who had no interest in my polymorphism 😩

I have no idea why this this is of no interest to anyone, maybe because it’s so common and for some people its a factor and for others it’s not. All I know is that I went private got a trial of T3 and I’ve never felt better. It’s the last piece of the puzzle for me and I don’t know why Drs are not interested. If something works, it works. Why. It study it? Why not be curious? Find the answer if that’s what you need to do to prescribe it but don’t make us all suffer in the meantime.

[Hay2016]

It’s madness. I had an argument with endo. I trialled t3 myself, she told me to stop and try lactose free. I’m on that anyway but didn’t know. I went back 4mnths later really feeling off and it’s not my thyroid and she can’t give out tablets like sweets. She’ll refer me to endo??? Thought she was one as must be something else. Wouldn’t listen at all.

Fuming to say the least. Xx

[SlowDragon Administrator in reply to Hay2016]

Hay2016

Roughly where in the UK are you?

After complete thyroidectomy and RAI you are very likely to need addition of small dose of T3

Email Dionne at Thyroid Uk for list of recommended thyroid specialists, many on this list will prescribe T3

Before considering T3 very important to do FULL Thyroid and vitamin testing. Vitamins ideally need to be optimal for thyroid hormones to work well

For full Thyroid evaluation you need TSH, FT4 and FT3 tested. Also extremely important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, we frequently need to supplement some, or all of these to maintain optimal results

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. Last Levothyroxine dose should be 24 hours prior to 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 dose 8-12 hours prior to test

Is this how you do your tests?

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

If you put up a new post with your results, members can advise on next steps

[Hay2016 in reply to SlowDragon]

Hi Thanks SlowDragon. Been fighting for 2yrs. The cognitive dissonance displayed by the endos is astounding. I worked for the trust for 20yrs so I will keep plodding on. I did see PALS thurs after appt having a meltdown so will print your fab advice and combine the two. I’m in Kent, was it Sheppy who you suggested previously was testing Dio genes?

[Hay2016]

The geneticist has very much put endo back in his place. I feel they are referring just to waste time hoping we will get fed up. (Letter didn’t show up before as I was out).

Hope you have the papers relating to the gene and send them on before next appt. I’m currently composing a letter. X

[NWA6 in reply to Hay2016]

I forgot to add the letter when I first posted 😬 Yes it’s all a waste of time really, my Endo already has the results of my DIO2 test. I happy that I’m getting T3 privately but going forward I’d like to be able to compose a letter to state why I should receive it on NHS and be part of the movement to make Endos and GP’s more knowledgeable and have full thyriod checks available and more choice in treatment.

[Hidden]

I think I can see where the geneticist is coming from, but it's still very frustrating and worrying when (polymorphism or not) you probably NEED T3. Why should patients have to jump through so many hoops to try and prove that?

Yes, it makes sense that, instead of having a mutation that knocks out the gene, you just have a variation on the normal gene which may or may not affect your T3 production (they don't have the knowhow to find that out yet). At least I think that's what the letter is saying.

But that doesn't make your suffering any less!

[NWA6 in reply to Hidden]

Yep I agree with what’s being said in the letter, the endo has the power to say ‘I dunno the validated of the test but T3 is harmless if you need it, let’s give it a go’ but oh no! He’s got to try and pass the buck because funding doesn’t alllow 😩 It’s all fun and games till someone needs T3 🥳😂

[DippyDame]

You may find this helpful

ncbi.nlm.nih.gov/pubmed/191...

I self medicate T3-only - buy my own - but saw an endo recently who accepted the snp would negatively affect conversion. They exist!

I wanted my clinical need for T3 recorded in my med notes...he ignored that one.

If you are Dio2 homozygous (as I am) conversion rate is further impaired.

This endo knew I wasn't asking for T3 (think head/brick wall) and after discussing my self'-medicating protocol he has now left me to my own devices with the option to see him again if I wish! Good old NHS!

Thyroid care is unbelievably poor because medics are not adequately educated ..many just fly by the seat of their pants! They also work within strict guidelines laid down by "those in high places" - but, ignoring, what are essentially only guidelines can put their registration at risk.

This is why so many of us have taken control of our own treatment. Read much and become well informed!

The issue is of interest to many people and work is going on to raise the awareness...

Petitions and debates re T3 have taken place in both Westminster and Holyrood ( where those with a clinical need for T3 should have it prescribed....all very well but an endo must first agree the patient's need)

Thyroid treatment is a scandal of monumental proportions, in essence we are diagnosed by numbers not symptoms and medicated by cost....if it were different this forum would not exist.

You have already been given some very good advice....all I can add is.....follow it!

Good luck

DD