Endo consult..... confused 😕

[Horsecrazylady79]

I had my endo consult yesterday, phone consultation, and was literally on the phone for just over...... 8mins! Felt like he couldn't get off the phone quick enough. I was surprised tbh as he is normally really good and this is the first phone consult I've had with him as he's normally f2f.

I asked about the cortisol pump and he said it's not available on the NHS yet in the UK, he knows of only one and that wasn't NHS either. He did agree to splitting the Pred, so we are going to try 3mg on waking and 2mg around 2-3pm. He originally said 8am for the morning dose but I pointed out that I struggled with taking the 5mg in the morning because I dipped too low overnight, hence the additional HC on waking to boost it.

I asked him about my Frees going down again and he said that this was normal if someone was on T3 and he saw it regularly on other patients on T3. I couldn't understand this and I even said to him that the last time I saw him he was concerned because they'd been dropping for a while and he wanted to keep an eye on them! Then he said that it happened because T3 didn't have a very long half life and until trials were concluded on the long acting one (apparently they're ongoing in Cardiff University right now) there wasn't anything that could be done!

He said he wasn't worried because my FT4 was 16 anyway- I said it's barely 35% (35.7%) through the range, he said again that it was fine? Shouldn't it be higher than this? My FT3 is only 59.5% through the range, sure this is meant to be higher too?

Currently on 125mg T4 (morning) and 10mg BD T3.

Any advice please? Thanks 🙂

[greygoose]

Well, he's right that the FT4 drops when you start taking T3. But the FT3 should rise, not drop.

Don't get too hung up on what levels 'should' be. There's no exact number that they should be, we can only say well, most hypos feel best when their Frees are blah blah blah. But that doesn't mean they 'should' be fore you. You need them where they make you feel well. And not everybody has the same sweet-spot.

Yes, I've read on here that FT4 'should' be about 75 % through the range. But that's usually on T4 mono-therapy. Not T4 plus T3. Not all hypos need high levels of T4 when they're taking T3.

So, instead of aiming for a particular number, aim to keep raising your levels until they're right for you, and you feel well.

[Horsecrazylady79 in reply to greygoose]

So the best way to do that would be to try an increase of either T4 or T3? Which would be better do you think? And thank you for your advice.

[greygoose in reply to Horsecrazylady79]

Personally, I would increase the T3, but not everybody would agree with me.

[DippyDame in reply to Horsecrazylady79]

Absolutely agree with greygoose.

Your medical history has been hugely challenging so "normal rules" may need to be tweaked!

For good health every cell in the body must be flooded with T3 by way of a constant and adequate supply

(I need high dose T3-only to function something most medics fail to understand....it sends them running for the hills!!)

T3 will cause both TSH and FT4 to fall....mine are hardly detectable. TSH is a pituitary, not a thyroid hormone and is basically a messenger which instructs the thyroid to produce more hormone if levels are low. My T3 is high so TSH is low.

T4 is referred to as the storage hormone....it is converted in the cells of the body to T3. For this to happen T3 must be able to enter the cells where it is converted to T3, attaches to T3 receptors and then fulfills it's function.

Serum T3 is not active, though for most people it naturally follows the expected process meaning FT3 level is a guide to cellular level.....unless one is like me and has a form of Thyroid Hormone Resistance where the system is flawed causing low cellular T3 which has to be treated with a supraphysiological dose of T3.

I'd suggest your T3 level needs to be higher to ensure your metabolism is good....also, bear in mind the heart needs a huge amount of T3

Also, (thyroid) weight gain is the result of slow metabolism, the result of low cellular T3. There are no tests for cellular T3 ( other than post mortem) so symptoms become essential indicators.

Goodness knows where your endo got the impression that " nothing could be done".....I suspect he has fallen into the trap that a little bit of knowledge can be a dangerous thing!

We can all fall foul of that, but the endo is supposed to be the expert!

If your body needs T3 then it needs enough to overcome any deficiency and that is an entirely personal thing. Signs and symptoms are the guide not a list of numbers....you need what makes you well.

Most people need no exogenous T3, some need a little and a few need a lot.

I had diagnoses of Fibro, Chronic Fatigue,IBS and more....for the most part they were the symptoms of low T3....

it's all in my bio if that might help.

This rant is really to underline the fact that you cannot always dose T3 by numbers....we are like machines that must be fine tuned!

10mcg T3 is not a huge dose....educate that endo!!

That is my experience but not everyone will agree......they need to better understand T3!!

Take care.

[greygoose in reply to DippyDame]

For this to happen T3 must be able to enter the cells where it is converted to T3,

Ummm... I think you mean T4 must be able to enter the cells.

[DippyDame in reply to greygoose]

Good grief, that was a garbled reply. Rubbish early morning self edit....but no acceptable excuse!!!!

Apologies everyone!

Correction...

T4 is referred to as the storage hormone....once it enters the different cells in the body it is converted to T3 by de-iodination. As T3 it will eventually go on to become the active thyroid hormone.

However, it is still inactive until it reaches the nuclei of the cells, where it attaches to thyroid hormone receptors, before going on to regulate body functions......including development, growth, metabolism, and cardiac function.

Thank you greygoose....you're a star! Does this make more sense?

[Horsecrazylady79 in reply to DippyDame]

It makes a lot more sense than the endo did 😆 I currently take 10mg twice a day, I'll start adding another 10mg to my dose, retest in 6 weeks and see how I feel too.

Thank you all for your advice. I really appreciate it x

[arTistapple]

It seems to me and from my personal experience, backtracking is very common with consultants. They don’t see you for ages between appointments and then don’t familiarise themselves with their previous notes -that’s assuming they even take proper notes in the first place.

They are literally opening themselves up to be caught on the back foot. They totally overlook/misunderstand the importance of every word spoken to the patient. The patient remembers because we hang on their every word.

IMO shoddy work.

Much more considered opinions from greygoose and DippyDame .

[Jokaah]

if you are a %positive throughout tests doesn't that mean you're in a normal range?

[DippyDame in reply to Jokaah]

Not sure what a "% positive" means but...

...it's a reference range, not a "normal range" and results that sit just anywhere within the ref range do not indicate that all is well

Instead we need to find the exact point within the range where symptoms are relieved.