What is the best course of action, regarding my situation?

[CoeliacMum1]

My endocrinologist is stopping private practice although he’s given me an alternative consultant to see he’s not thyroid specialist.

I pay privately for my Liothyronine and obviously going forward need another consultant to prescribe.

How do others continue to monitor their thyroid conditions and get their prescriptions, if not covered by NHS?

I had all my previous appointments/tests paid for by my health insurance obviously this isn’t feasible long term.

If anyone would kindly let me know how they go about getting theirs sorted it would be really helpful.

[DippyDame]

Are you on T4/T3 combo or T3-only?

You could try visiting an NHS GP and asking to be referred to an endocrinologist....taking with you an account of your thyroid history.

But you don't appear keen to do this, so...

Instead, you could self source and self medicate with T3.... by asking if any member is willing to share their T3 source.

Or, visit another known private endo....

Or, e-mail admin, requesting the list of private endos they have on file.....perhaps your first step.

[CoeliacMum1 in reply to DippyDame]

Thanks for replying.

I’m on T4/T3 combination.

My GP referred me after exhausting all areas they thought my problem was, this was during covid (and probably eager to pass me on) as I mentioned various things she wasn’t aware of regarding conversion problems of thyroid hormones … she said it was above her area and she knew I had health insurance and would be seen quicker to see endocrinologist for further investigation.

I’ve had whole year or more, and dozens of tests and finally put on Liothyronine (T3)

I sourced my endocrinologist from Thyroid U.K. list… no one else in my area.

I don’t think it’s an option to refer me again through my GP, but I could ask explain my situation and I have thought of that too. However I won’t get my T3 medication through NHS, my endocrinologist already answered that question.

Would a NHS endocrinologist actually give me this prescription for T3 to buy privately and based on another consultants say so?

I’m willing to pay for my medication I’m just asking how others manage their situation if not getting medication the NHS route.

I guess each endocrinologist will want their own set of tests and investigations leading to various outcomes and great cost as I cannot fund this indefinitely on health insurance.

[DippyDame in reply to CoeliacMum1]

Your labs indicate poor conversion.....high FT4 with low FT3

Your labs 10 months ago....

Thyroid function test On T4 : 150 ug daily.

Serum free T4 level 22.3 pmol/L [12.0 - 22.0]

Serum free triiodothyronine level 3.9 pmol/L [3.1 - 6.8]

Your FT3 was abysmally low!

On that basis an endo might/ should be persuaded to prescribe T3....worth building a case for prescription and pursuing again.....vigorously!

I guess your dose is relatively low.

I need high dose T3 only ( 75mcg daily) and have to source and buy my T3.

It's an ill divided world!!

[CoeliacMum1 in reply to DippyDame]

The 150mcg levothyroxine (T4) was a typo it was 125mcg.

We dropped to 100mcg T4 added in 10mcg of Liothyronine (T3) then my TSH was suppressed.

I now do alternating days of 100mcg one day the other 75mcg of T4 and 10mcg of T3 daily … as of few weeks ago my TSH (only test done this time) 0.38 [0.3-5.5]

However adding the T3 it’s had very little baring on my FT3 levels and FT4 is much lower, but has lowered my TSH considerably.

I’ve been very much better for getting my TSH lower though … before seeing endocrinologist my TSH was always way above 2 and had been 4 few times past 8-10yrs whilst on 100mcg T4, predominantly had Aristo & Teva brands… switching those to Accord or Almus lowered my TSH in first instance.

I buy my T3 I have had Mercury pharma or Mornigside brands, it’s the only brand my endocrinologist will provide.

I have a TSH routine blood test every 8 weeks, Blood pressure check, heartrate ecg couple times a year.

I don’t think I can really find £175-£185 consultation fee every 2 months, along with private blood test charges on top of what I already pay is a prescription of £75 for 28 tablets.

I just wondered how others go about their maintenance of thyroid, and getting the elusive Liothyronine (T3)?

[DippyDame in reply to CoeliacMum1]

I'm afraid TSH is not an accurate marker for evaluating medication....no matter what medics say. Science backs this up.

thyroidpatients.ca/2021/07/...

It's not the lower TSH that has helped... that is just a consequence of what has actually helped.... the inclusion of T3.

I just wondered how others go about their maintenance of thyroid, and getting the elusive Liothyronine (T3)?

I thought, in my first response above, that I had already explained the options available to you, for obtaining T3....apologies if it is not helpful.

NHS medics and prescriptions

Private endo....private prescription

Self source and self fund

thyroiduk.org/if-you-are-hy...

As to actual numbers of who does what.....you would be hard pressed to find that out. We are all very different with very different needs and very different ways of fulfilling those needs.

Good luck!

[CoeliacMum1 in reply to DippyDame]

Sorry if I’m not making any sense.

I appreciate you have answered some points, but I’m obviously not explaining very well.

I went to see endocrinologist via health insurance all my tests and consultations for over a year was paid for by my health insurance and was referred by my GP… I still had to pay for all my private prescriptions and the £250 initial consultation payment, obviously we’ve been paying for health insurance for decades and wanted to know my options now.

However if I end up having to go privately again (as my consultant is finishing) and go to a new consultant for ongoing maintenance. Health insurance rarely covers this scenario, I surely will have all manner of consultation fees and tests costs all again on top of medication costs, as most consultants like their own tests done I’ve found, this could be repeated many times throughout my lifetime. I wondered if others encountered this unfortunately.

So basically

1.Do they see a consultant every 6-8wks have tests and health checks as previously mentioned along with all consultation fees on top of their medication fees, how often do they see a consultant, have tests and how long do they get prescribed medication for at a time ?

2. If someone is seeing a NHS consultant and getting U.K. regulated medication do they still prescribe it you, even if can’t get T3 paid for on NHS?

Obviously few have managed on NHS to get all and obviously disgrace others have to fight for it.

I appreciate some self medicate and get non U.K. regulated meds maybe some get regulated too, I have no idea… that might have to be an option but not until I’ve checked out others.

I guess knowing others experiences in this situation would be helpful.

Regarding TSH as my thyroid hormones (FT3 or FT4) are rubbish and as you rightly mentioned abysmal FT3 3.9, then at its best it’s been 4.2, but more recently 3.8 (from memory) but only thing that has, is a lowered TSH…but appreciate thyroid health is more than TSH and why I’d prefer to see an endocrinologist with thyroid specialist interest, not a diabetic one which seems to be most I’ve been told about.

Maybe I should of been clearer what information I required. I know I ramble!

Apologies.

[Annib1 in reply to CoeliacMum1]

Hello there. I am in a similar situation, needing combination of T4 and T3 and during Covid choosing to see an endocrinologist privately while waiting for GP to refer me to him on NHS. H e told me I needed the T3 but I could not get it on the NHS so gave me a private prescription. I am fighting this and have had a reply from the consultant’s commissioning group to say my consultant is wrong and I should get it. No offer as yet to reimburse me but my MP is taking this up. In the meantime I have both paid in this country and sourced abroad. The Thyroid Trust are campaigning to get all commissioning groups to acknowledge that some patients require T3 as per NICE guidelines. Do private message me if you want to know more. The situation needs addressing.

[CoeliacMum1 in reply to Annib1]

Thanks for sharing your experience, I will message you.