Update following 1st endocrinology appt

[Smorzando]

Hello,

I thought I'd give a quick update as two days ago I had my first appointment with an endocrinologist. I paid for a private appointment with a doctor on the ThyroidUK list.

I had written her a brief 'covering letter' which my GP included with my referral. Anyway, apparently I looked terrified when I went into her consulting room as she took one look at me and just said "Yes!" - I was like, what? and she said "Yes, yes you can have T3!" 😂

Briefly, my history is that I have Hashimotos, and have been on Levo since January with no improvement - and blood tests were showing poor conversion. In July my T4 was at 120% through range and T3 just 38%.

So, the outcome of the appointment is that she's going to write to my GP to request that I am prescribed Liothyrinine on the NHS (!) - and if that fails, she will write me a private prescription. She did say that historically it has been difficult to get Lio in my area (Glasgow CCG) but that since my GP has indicated she has a few patients on it, it may be possible and it has got to be worth a try.

Dose wise, she is keeping my Levo dose at 75mcg (that's what I've been taking since the above blood tests, which were on 100mcg), and is adding 2 x 5mcg of Liothyrinine. She wants me to do a blood test after 6-8 weeks on this dose and she'll then review to see where to go.

I asked her about where she aims for in terms of test results (obviously, as well as taking symptoms into account), and she says she likes to see T3 and T4 as high as possible in range without reducing TSH "too much below range, although it's ok to go a little below if the patient feels well".

It was also interesting (if somewhat galling) to hear her say unequivocally that my TSH of 3.5, around 8 years ago, was 'absolutely NOT fine', contrary of course to what I was told at the time by the GP.

Anyway, I hope this might be useful info for some of you and I will update on my progress as I go 😊

[fuchsia-pink]

Terrific news - well done

Let us know how you get on with it. And great to see a sensible starting dose [you might want to do just one x 5mcg for the first week] x

[Smorzando in reply to fuchsia-pink]

Thank you so much 😊 yes I was very relieved.

And yes, I'm planning to start the T3 slowly! Now just waiting for the consultant's letter to reach my GP so I can see where we go from here. But it's a promising start.

[Lalatoot]

The consultant needs to provide the T3 on a trial basis in the first instance. Once that is a success then they write to the GP to take over the prescription. The trial is often for 3 months.

These are the guidelines followed by the Scottish health boards. Got mine through NHS Grampian this way.

So don't be disappointed if the GP says no and puts it back to the consultant - it will just take a bit of ironing out.

[Smorzando in reply to Lalatoot]

Thanks very much for that info, Lalatoot. I would have thought the endo would know this, but perhaps not. I'll see what my GP says (she tends to be very helpful & willing to fight my corner, so fingers crossed) - but I will now be prepared for some back-and-forth between them.

In the end I am just pleased to have had an unequivocal decision in favour of me trying T3, so even if I have to source it through private prescription I can live with that. Of course, in the long term it would be far better to have it prescribed by the NHS, as this is a lifelong condition.

[Lalatoot in reply to Smorzando]

Technically to get it on the NHS it has to be trialled and prescribed by an NHS endo. But you may be lucky with a helpful GP.

My NHS endo didn't know the procedure so I had 3 months delay after I was offered a trial until she found out that she had to prescribe it initially. Lots of chasing up and phone calls to GP and end's secretary!!

Hope it all falls into place for you.

[Smorzando in reply to Lalatoot]

Thank you very much & I will keep the forum updated with my progress 😊

[SlowDragon Administrator]

Brilliant

Fantastic news

[tattybogle]

Thats brilliant news , bet you had to pinch yourself on the way out to make sure you weren't dreaming

[Smorzando in reply to tattybogle]

I certainly had a big smile on my face when I came out of the hospital 😁 but it's still early days (can you tell I'm trying not to get my hopes up too much?!)

[tattybogle in reply to Smorzando]

Oh no , i didn't mean it's brilliant news that you might get better (that would be to much pressure)

I meant it's brilliant news that you were spoken to like an intelligent human being by a rational well informed endo.... that's enough of a 'feel good' miracle for the time being ..... getting better would be a bonus xx

Must be something in the air this week ... i just got given my blood results without any of the usual condescending receptionista claptrap too. A really nice (new ?)lady just said "oh , yes ,of course" and read them out properly with the ranges. and i said "thankyou very much" , just like that , no problem , what is the world coming too, soon we wont have anything left to moan about

[Smorzando in reply to tattybogle]

Lol it's ok I knew what you meant! I'm so used to seeing doctors as ... well, almost "the enemy" (?! sounds terrible I know) that it does take you aback when you meet a decent one. Sadly, from prior experience, they sometimes appear great on first meeting then rapidly go bad if you fail to improve following their treatment. Anyway, I'm getting way ahead of myself here! Glad your new receptionist was a decent human, long may it continue 🤞

[shaws]

That's great that you've found a good and helpful doctor, more concerned with restoring patient's health with thyroid hormones.

I watched a couple of the Scottish Parliament's debates on thyroid hormones a few months ago.

This is a link and I hope it helps you.

thyroiduk.org/who-we-are/su...

p.s. Dr Skinner (the last of the old-schol doctors) trained in how to diagnose according to clinical symptoms and who helped Lorraine recover her health. He has died since and he is badly missed by his thousands of patients as he must have been the last doctor trained as a student doctor in everything to do with a dysfunctional thyroid glands. He consulted in Glasgow and Birmingham.

thyroiduk.org/who-we-are/su...

[Smorzando in reply to shaws]

Thank you Shaws. I read the article and it never fails to shock me just how badly thyroid patients are treated. I'm aware there have been petitions in the Scottish Parliament and I know of the MSP involved in campaigning.

It took Lorraine years to get on the path to the right treatment and to full recovery; I thank my lucky stars that I was fortunate enough to join this wonderful forum a mere ten months ago at the time of my diagnosis as I would never have been where I am now without all the advice and support I have found here.