Print

Please login or register.
1 Hour 1 Day 1 Week 1 Month Forever
Login with username, password and session length

[Nas]

I was going to suggest Nick Panay himself ( not one of his many minions)

Or, Dr Paula Briggs ( Chair of the BMS, or was at some point?) She’s based at Liverpool Women’s Hospital.

[joziel]

I don't really know what to suggest crispy, other than to say that in some ways I'm in a similar but maybe less extreme situation.

Despite tinkering with all kinds of stuff over the last 3 years my night time symptoms have been going on, they are still happening. Not as bad as when I was on much lower doses of estrogen, but I haven't had a single symptom-less night since before all this began. I get light inner tremors, my hands going numb in my sleep, my heart beating a bit hard - it's just not as extreme. But it's still affecting my sleep and I don't get much deep sleep.

I have zero idea what to do next and whether I just have to accept this. I don't mind seeing someone privately but I'm not made of money and I can't afford to see bazillions of doctors trying to find one who can help and what's going on seems beyond just sex hormones and beyond just thyroid, but I get overwhelmed when I try to find a private endo especially as I'm on T3.

Anyway, it's all a bit rubbish and I hope you get some answers. I see Dr Jane Robertson at Newson Health via Zoom and she's very good with HRT - but there is a finite number of things doctors can suggest if they are sticking to HRT.

[CrispyChick]

Thanks folks.

Do we know if prof paney deals with wider issues than solely sex hormones and HRT???

I'd like my thyroid expertly checked. I've had the tests many a time. But I keep coming back to it as I'm constantly cold and fluey. Going to ask my GP if she'll do a full panel - at least I'd have the results - just need someone to interpret them.

Who diagnosed your thyroid issue joziel???

I think you're right joziel - it's probably wider than  just sex hormones. But who to see? The NHS endocrinologist refused to deal with me.

I too have already spent thousands. I haven't got thousands more to spend. I'm no longer working.

But I've done 4 months on nothing and I'm in absolute hell. So I cannot continue to do nothing. I feel like I am dying every single day. But I never seen to die. 

I just want to catch a break. 😞

Any further advice on what Nick Paney can delve into, would be very much appreciated. X

[joziel]

With the thyroid, your GP won't be able to do a full thyroid panel. The lab won't let them, if they are an NHS GP. All they will do is TSH and (if you're lucky) T4 and that's no way near a full thyroid panel.

The best full thyroid panel around is the Blue Horizons Platinum test which covers TSH, free T4, total T4, free T3, thyroid antibodies AND reverse T3/rT3. It also includes cortisol and ferritin and a few other things. It's not cheap, about £140, but it's the only test in the UK which you can order yourself and which includes rT3. It needs a venous draw due to the rT3, so you have to take the pack to someone to draw your blood. Usually aesthetics clinics offer this service if they are run by nurses, that's where I go. It's £30 for a blood draw.

Then if you need thyroid meds, I recommend Dr Momi and Functional Thyroid Health (google for website). He accepts any test results including Blue Horizons and will prescribe whatever combo of T4 or T3 you need and he doesn't go by TSH and you can see him on Zoom.

However, again, he is 'only thyroid'. So when it looked like my stuff might be pituitary and go beyond thyroid, he couldn't help there.

I've also spent thousands I don't have 

[CrispyChick]

Ok. I've found Dr Momi. His site lk is to a decently priced randox test.

I've had thyroid tested a few times, also by the Marion Gluck clinic. I'm pretty sure my GP tests more than just TSH. Even the endocrinologist (NHS) didn't want to do any more tests, saying my GP had been very comprehensive. So I'll ask her.

If you do your own test, how on earth do you know if you have an issue or not??? And therefore need meds via Dr Momi???

And here lies the crux of the problem. All these 'experts' work in their own little silos. I feel like I'm left trying to piece together the various bits of my puzzle. But I constantly reach a dead end as I'm not medically trained. It's infuriating.

Now, I'm looking at Prof Paney and he will have ideas if this is all peri. But if it's not...I'm again paying for nothing  even thyroid is not listed on his site.

[SundayGirl]

Medichecks do an Advanced Thyroid Function Test. It covers everything in the Randox one as well as Ferritin, CRP, Folate, B12 and Vitamin D. They'll also add in a doctor's comment bit which is sometimes but not always helpful.
If you do a test you can always ask for help interpreting it here 

BTW
You really don't need to test reverse T3 as it won't tell you anything more than what the rest of the TFT will tell you.

[joziel]

You do indeed need to test rt3. My own lab results were all in normal range except my rT3 was 33 and far above range. At first I only did the Medichecks test and I didn't pursue things any further because everything looked fine there. It was only when someone on FB suggested I get my rT3 tested that I repeated the test with a full panel including rT3 and found my rT3 was far above range. This was enough for me to be prescribed a trial of low dose T3.

Once you know your rT3 is okay you don't need to retest it every time, but, if you have a history of conversion problems, if you increase your T4 dose it is good to test it again.

The Medichecks panel doesn't include rT3 and whilst it offers a finger prick option, it's better to get a venous draw for the most accurate results. Dr Momi has some deal thing with Randox but you don't have to use those tests, you can use any test results. (Unlike Dr Conway at the Thyroid Clinic who now makes everyone use her own tests.) He's also based in Ireland so the testing services he recommends have to be accessible to people in Ireland and that limits providers. (He can prescribe fine to the UK, so don't worry about that.)

As for how do you know if it's an issue...  It's not that hard to understand thyroid results. You can post them here for eg. If something is way off it will be very obvious (above/below range).

[dangermouse]

Just to add that our thyroid is one of the first to be affected in peri and, as it’s the master hormone, it really does affect everything. I suspect all of ours are off.

I am currently following a thyroid supportive diet - main thing is I was under nourishing myself (intermittent fasting and keto over the years, becoming more restrictive with calories as weight became harder to lose - after 2 stone just falling off in early peri) so it’s about eating a lot more food than I’m used to, to let the brain know that nourishment is now available so that it switches away from the emergency high cortisol state and normal systems start to kick in again.

It can take a year to correct and I know I’m still struggling to burn glucose and not immediately store it due to ammonia still being excreted but I’m having some better days.

I have also just come down, exactly 28 days later, from having dosed some very high prog cream and Utrogestan. Interestingly, even oral Utro gets stored in the fat cells (the part that isn’t converted into pregnanolone) so keeps disrupting the HPA Axis as it continues being released into the blood. The cortisol leaps have finally stopped as it’s been quite scary feeling on high alert all the time. CHAT GPT said I would start to feel better 4-6 weeks later as takes that long to come out but there always seems to be a 28 day pattern, just like our cycles, which could be the equivalent of a Day 1 sudden fall of hormones even in post meno.

Anyway, sorry I’m rambling, but just to say that thyroid is worth a visit down the rabbit hole!

[SundayGirl]

Joziel - you and I differ greatly on the importance of rT3 as far as thyroid function is concerned (understatement of the year  )

There are many causes of elevated rT3 and only one of them is related to thyroid function. Everyone has some rT3. It's the bodies pressure release valve if you like. If you're stressed, ill, have some inflammation (and a whole host of other things going on) then your body will naturally downgrade the conversation of T4 to T3 to make you slow down to heal yourself. This in itself will cause a rise in rT3 which does absolutely nothing harmful to you.

As for interpretation of TFT results, well we'll probably disagree on that too 

CrispyChick - whichever test you decide on, please make sure it includes vitamins and inflammation markers. It all goes hand in hand.

[SundayGirl]

Anyway, sorry I’m rambling, but just to say that thyroid is worth a visit down the rabbit hole!

Agreed. It's definitely worth checking thyroid function. Many women develop 'dodgy' thyroid function as they age and lots of women are diagnosed at this stage of life.

[joziel]

Yes, everyone has *some* rT3 - but not above range rT3, and not in combination with very low and only just in range T3. That combination is very likely to give hypo symptoms. It's about the full picture. Which you only get if you do all the tests....

[SundayGirl]

Well if you have a low T3 then it stands to reason that you'll have a higher rT3. T4 has to be converted to something.

And if you have a low T3 then there's not much point in paying for a rT3 test as it will be high.

Also, low T3 and higher rT3 doesn't necessarily mean you have issues with your T4/T3 conversion. As I said, high rT3 has several causes not just conversion issues.

Thyroid results aren't always straightforward to understand.

[CrispyChick]

Well, I'm really confused now. 

[SundayGirl]

    sorry

In simple terms

Your hypothalamus sends a message to your pituitary, your pituitary sends a message to your thyroid, your thyroid produces the hormones (T4, T3, T2 and T1). Similar in reverse with hormone levels being monitored and adjusted constantly -- the feedback loop.

If you get some bloods done and post results, we can take it from there and either way, say a thyroid issue is possible or not.

I know you've been struggling so it would be something to cross off the list or maybe something to look into further.

[CrispyChick]

Ok. Thanks. I'll ask my GP first, see if she'll do a full panel or not.

I still suspect it's not thyroid since I know Marion Gluck tested a lot of values. But yes, something to cross off yet again.

Thanks all.