Taking NDT, TSH currently 0,020 (range: 0,270-4,200) TSH suppressed:where can I get info to give to endo??

[carorueil]

I was hypo last year and my endo insisted that I was hyper (something a lot of fellow patients have encountered). Having increased my ERFA meds & re-started DHEA, I felt things were getting better - at least I've been feeling better. Just doing a pile of blood tests for my French gp of which the thyroid ones will be sent to my Irish endo. I've just received the TSH results which are 0,020 (0,070 in June and 0,200 in February with this range of 0,270-4,200).

I'm specifically flying over to see my endo next week in Ireland (haven't physically seen her since September 2019 with Covid), as since then we've had phone consults.. Last November she insisted that I was hyper (despite knowing that I had a huge shock in September triggering weight loss, drop cortisol - house damaged by new build next door).

I'd be grateful if someone could point me to some 'medical/scientific' data/reports which I could bring along to show her: I'm really not looking forward to this consult but feel I need to be as prepared as I can be for this 'discussion'.. Thanks for your help

[pennyannie]

Hello Carorueil :

Do you have a T3 and T4 reading alongside this TSH result :

If your T3 and T4 are in range that is the over riding consideration and generally speaking when on NDT the T3 will be proportionately higher in the range than the T4 and that's ok too.

It's all quite pointless as the blood tests we are trying to fit within were introduced to be used with Big Pharma's T3 and T4 medications as with NDT there are no blood tests, you simply dose to the relief of symptoms, which doesn't require a doctors intervention.

[carorueil in reply to pennyannie]

Hi Pennyannie, I'm waiting for those (hope to get them early next week).. The last results I have are from June/February: FT3 3,14 ng/l (up from 2,90 in Feb) (range 2,30-4,50) FT4: 1,16 (june up from 1,09 Feb) (range 1,00-1,60). I know that the TSH is pointless butmy endo who prescribes ERFA but doesn't seem to even know that it's 'life' is shorter than levo is more of a problem! I'm trying to have so 'scientific' info to show to her - me saying how I feel etc doesn't seem to work! Had huge amount of stress last year plus taking topical steroid gel for scalp lupus (both of which I think messed up thyroid as had been on same level of meds for over 5 years..)... The issue is trying to 'convince' said endo.. I don't have a huge range of alternative doctors to go to unfortunately!! I just wish doctors would listen to us and how we're feeling ! thanks!

[Charlie-Farley in reply to pennyannie]

I’m going to tag you in to a more general comment in tests I’ve just made we can see it why can’t they.?

[carorueil in reply to Charlie-Farley]

Thanks - I have no idea! Ignorance, too busy/not interested? It just means that we all end up trying to 'defend' how we feel and what we're taking to medical professions who are meant to be helping us!

[Charlie-Farley in reply to carorueil]

Hi carorueil

yes a fair assessment and then we have to spend hours reading up on our own conditions. I’m so mistrustful now I will never be able to not do this.

diogenes post I was referring to. This guy is a dude 😊👍 we need a fair rew more diogenes.

healthunlocked.com/thyroidu...

[carorueil in reply to Charlie-Farley]

Know what you mean - having been prescribed hormones (not for thyroid) that I didn't need resulting in seizure I check everything: to the point when I refused to take prednisone my rhumatologist told me I argued like a politician! In France there's a culture where patients are expected to be passive: any research done (god forbid internet) actively discouraged- especially by specialists, sensitive souls unlike other countries where I feel it's a patient-doctor team effort. Some patient groups are slowly emerging to help others deal with side effects from treatments for endo, but quite a way to go. I'm still trying to find 'the' medical reference to bring along to my endo next week to 'show' her that TSH is suppressed when taking NDT 🙁 I'm sure when I get my thyroid blood results this week it will say that the TSH is suppressed and she'll insist that I'm hyper again!

[SlowDragon Administrator]

just testing TSH is completely inadequate

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum

greygoose may be able to suggest where you can get tested in France

Alternatively stop off in U.K. and get full thyroid and vitamin testing done via Medichecks or Blue horizon

List of private testing options and money off codes

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Day before test split NDT into 3 smaller doses spread through the day and last dose approx 8-12 hours before test

[greygoose in reply to SlowDragon]

You have to ask your GP to do whatever tests you think you need. And, he might say yes, or he might come up with some spurious reason for not doing them - like yes to ferritin but no to iron because - and I quote - "they're the same thing"! (I kid you not.)

Failing that, you could ask at the lab if they will do certain tests if you pay for them yourself, rather than them being covered by the social security. That has worked for me once or twice. But, you could only ask for one or two at a time, maximum. And they might do them, or they might not.

As far as I know, there are no private companies in France that do private testing, like there are in the UK.

[carorueil in reply to greygoose]

Thanks Greygoose - my new French gp is very much into doing lots of tests (old one was brilliant but sadly a 68ard and anti-covid). She's into 'gut health' and think that impacts on immune system etc.. So she's already sent me to a lab that does specialised tests here in France (for allergies etc). I'm not in the Secu so I can pretty much get things done. I've done some private testing with a Danish company (saliva cortisol) - there is one in Metz that does it (gp told me) but I preferred to stick with Danish company costs more than going through a doctor (but then you're paying for a doctor's consultation).

[greygoose in reply to carorueil]

OK, so you've pretty much got it covered, then, haven't you.

[carorueil in reply to greygoose]

Well as well as I can - just need to 'convince' endo that I need to be on current dosage of meds or maybe more... (and find medical info to show her how ndt works... 🙁

[carorueil]

Hi SlowDragon thanks for the information. But I've done the full whack of tests here in France - I've been doing the full set every 6 months for the last 11 years. This year have done them in February/June and yesterday (as definitely was hypo) I'm just waiting to get all the other test results early next week. My post for help is because my endo seems to be obsessed with TSH, I'm trying to find some medical/scientific journal article which I can bring along to show her that NDT suppresses TSH: talking on the phone didn't work so I'm hoping that if I have some documentation from some journal etc I can bring it along and she'll 'see reason'?? (or at least admit that I feel better than I did a year ago) I've never split my dose - all my tests have been 24 hours since last dose: having reduced my NDT last year (at endo's request) I felt really unwell the day after reducing so went back to normal dose.That's when I learned (thanks to Thyroid UK members) about the 'life' of NDT - which obviously endo doesn't know about as she obviously thought reducing my meds 2 days a week was the same as with levo..It's a bit of a balancing act trying to explain stuff to doctors sometimes!!

[greygoose in reply to carorueil]

I can't imagine why you stick with this endo in Ireland. She doesn't sound much good. Why don't you find one in France? It would be a hell of a lot easier.

[carorueil in reply to greygoose]

Thanks Greygoose but as you may already know, a) French endos can't prescribe NDT and b) it was French endos that prescribed Levo way too soon which meant I was overmedicated for 2 years; ending with a seizure so can't say I've had great experience with them! So I'm kind of stuck with the Irish endo for the moment: my attempt to find someone else there failed spectacularly earlier this year when I was prescribed weird and wonderful stuff: Low-dose Naltrexone/Adrenal support... All via a gp who you can't physically actually meet 😱 Definitely don't want to go down the anti-age guru road again either !! My family is in Ireland so distance isn't an issue:just getting endo to understand how NDT works.. 🙁

[greygoose in reply to carorueil]

No, not only can they not prescribe it, but it is illegal in France. You're not even supposed to import it.

[carorueil in reply to greygoose]

Well my private French healthcare insurance covers it's cost as my endo completed the form saying that it is better for me than levo. But I'm not part of the Secu.

[greygoose in reply to carorueil]

OK

[Charlie-Farley]

carorueil

How about coming at it from a different direction. Find papers that cast doubt on TSH as a monitoring marker.

On here we all know

TSH is not the most important marker for monitoring thyroid health.

It is an indirect measure, so why set so much store on an indirect measure when there are two perfectly good hormone tests to play around with.

Once you introduce a substitute to one’s own thyroid hormone production, the natural feedback loop is lost and TSH will not likely act in the same way. I wasn’t well until mine was well below range. But the FT3 and FT4 are great! - more importantly 🤗.

The pituitary makes TSH not the thyroid. What if the pituitary I s ‘off’.

So many ‘what ifs’.

I’m sure diogenes posted some good stuff the other day. Go have a look at his content.

😉👍

[carorueil in reply to Charlie-Farley]

Thanks Charlie-Farley - I suppose as we're constantly been warned about the TSH we end up just focussing on that rather than the bigger picture 😫 A bit like not seeing the FT3/FT4 for the TSH! Thanks will have a look at diogenes recent posts. 👍

[Charlie-Farley in reply to carorueil]

sometimes posts have tags so you can search (I think) by that also. There is so much ‘good stuff on here’. 😊👍

[carorueil]

Thanks will do a bit more digging on the site tomorrow 👍