Endocrinologist tomorrow : I have an a telephone... - Thyroid UK

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Endocrinologist tomorrow

stillhopeful profile image
25 Replies

I have an a telephone appointment with an endocrinologist tomorrow at 3. At present on Metavive II, 4 tablets, was on Armour 2g, previous to March 18 was very ill on Levothyroxine. Have had gradual decline in health since first big improvement on Armour in March 18.

My questions are:

How should I use this appointment?

If she offers T3 (I know that would be a miracle) what dose should I start on?

Thanks so much

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stillhopeful profile image
stillhopeful
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25 Replies
greygoose profile image
greygoose

Should a miracle happen, and she does offer it, she will probably offer 10 mcg. Jump at it, but start on 5 for a couple of weeks before going up to 10. That will be easier on your body, but also give you a little stash for emergancies. :)

stillhopeful profile image
stillhopeful in reply to greygoose

Thanks so much for replying greygoose. That's very helpful. Presumably she would increase up to replacement? Although I realise its difficult to predict treatment.

greygoose profile image
greygoose in reply to stillhopeful

You can't presume anything with doctors. It depends on her competance, knowledge and good will.

stillhopeful profile image
stillhopeful in reply to greygoose

I guess it's hard to predict the correct level of T3 that will suit my body?

greygoose profile image
greygoose in reply to stillhopeful

Well, no, it's not that. With all hormones you have to start low and increase slowly. Which is why I said that should she give you 10 mcg, don't start on that straight away, start on 5 and increase to 10 after two weeks. You may need more after that, or you may not. But, you won't know for at least four weeks, once your body has had time to adjust to the 10 mcg.

It is impossible to know what dose of hormone anyone is going to eventually need. You start low and work up slowly until you feel you've reached your sweetspot. Go too fast and it's very easy to miss that sweetspot. :)

stillhopeful profile image
stillhopeful in reply to greygoose

That's incredibly helpful. Do I come off Metavive completely when doing this?

greygoose profile image
greygoose in reply to stillhopeful

I'm afraid I don't know much about Metavive, but from what I've understood, it's a bit like playing Russion roulet. Maybe you'll get a decent dose of hormone, maybe you won't. Do you find that it helps at all?

stillhopeful profile image
stillhopeful in reply to greygoose

It doesn't seem any worse or better than Armour but I've only been on it 2 and 1/2 weeks.

stillhopeful profile image
stillhopeful in reply to stillhopeful

It's also half the price.

greygoose profile image
greygoose in reply to stillhopeful

Yes, I realise it's cheap, but it has no guaranteed hormone content, so you never know how much you're getting - maybe none at all.

stillhopeful profile image
stillhopeful in reply to greygoose

Good point. I think I may have to go it alone on T3 at some point but quite frightened of feeling worse as only just managing at moment. Will have to steel myself and buy lots of ready meals.

greygoose profile image
greygoose in reply to stillhopeful

Could be you're only just managing at the moment because you're not getting the T3 you need for the Metavive.

stillhopeful profile image
stillhopeful in reply to greygoose

Thanks for keeping chatting. Feel more empowered to talk to endo tomorrow after this dialogue. As for Metavive. Can't blame it for present health as only just switched from Armour. It has been a gentle decline for the last 3 years with improvement in the summer but winter getting increasingly worse. NDT doesn't seem to be the answer for me.

greygoose profile image
greygoose in reply to stillhopeful

Could be you just weren't taking enough Armour.

Are your nutrients all optimal, because Armour won't do much if they're not.

stillhopeful profile image
stillhopeful in reply to greygoose

23.2.21FT3---8.4 (range-3.1-6.8-pmol/L)

FT4---21.1 (range-12-22-pmol/L)

TSH---0.01 (range- 0.27-4.2mU/L)

Vit D 115-nmol/L

Dec2020

Ferritin---------105ng/mL---(range-3.1-204)

Serum folate-16.3ng/mL---(range-3.1-20.5)

VitB12--------789pg/mL----(range-187-883)

As above fairly recent tests show nutrients ok I think.

Reduced Armour from 2 1/4 g to 2 g 3 1/2 weeks ago as thought it might help with chest pains and heart palpitations. These reduced but could be co incidence as I also changed my diet to keto diet as in Sarah Myhill. I kept to equivalent dose in Metavive when I changed to Metavive 2 1/2 weeks ago.

I know its crazy to change several things at once but I put off change until desperate or have burst of confidence. Then change lots things while I have the motivation.

greygoose profile image
greygoose in reply to stillhopeful

In which case we cannot know what is doing what.

I didn't know Metavive was dosed in grains. But, even if you did keep to the same dose, you have no guarantee that there was the same amount of thyroid hormone. Have you had a test since February?

stillhopeful profile image
stillhopeful in reply to greygoose

When I say the equivalent in Metavive I meant 4 Metavive 11 tablets which I researched as the equivalent to 2 g of Armour. I haven't had a test since Feb. Thought I would wait till 4 weeks on Metavive. My health hasn't declined since Feb. Its stayed much the same with a dip when I had my first jab and a reduction of palpitation and chest pain when I reduced the Armour and went on Keto diet.

greygoose profile image
greygoose in reply to stillhopeful

OK, but I think it would be better to wait the full six weeks. :)

stillhopeful profile image
stillhopeful in reply to greygoose

OK thanks

HighlandMo profile image
HighlandMo

I’ve been taking Metavive for several years and I believe it works. The endocrinologist will almost certainly never have heard of it and if they have will be very dismissive. I think you’ll have to see how the consultation goes and then come back here for advice.

stillhopeful profile image
stillhopeful in reply to HighlandMo

Thank you Highland Mo, I haven't noticed any difference between Armour and Metavive so have nothing against Metavive. However I don't think either are the answer for me at the moment. Will definitely come back for advice.

stillhopeful profile image
stillhopeful in reply to stillhopeful

Well, I have had the endocrinologist phone appointment I will say that the consultant was not patronising or rude and that she did listen to me. I also had 2 medical students listening in which was an opportunity I felt. However she is not going on the recommended list as she does not prescribe T3 or NDT because she thinks they cause osteoporosis and heart problems.

She feels all problems with Levothyroxine can be solved by changing brands or using the liquid form. She has very few patients that do not do well with Levothyroxine. ??????

She was not interested in the fact that prescription of T3 on the NHS plummeted 2013 to 2018 when the cost of T3 increased x20. She would give the same advice to Hillary Clinton who is in fact on Armour NDT. She did not respond to the fact that there are 10,000 people on the UK thyroid website who have difficulties while being treated on the NHS. I manage to directly address the students to say that prior to 1980s the majority of patients were treated with Natural Dessicated Thyroid and were much better off. So I feel the appointment was not a complete failure.

Onwards and upwards!

Gingernut44 profile image
Gingernut44 in reply to stillhopeful

Well, at least you know now where you stand ☹️

stillhopeful profile image
stillhopeful in reply to Gingernut44

Yup, I can now sayI have seen an NHS endo!

stillhopeful profile image
stillhopeful in reply to stillhopeful

And survived!

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