how was the webinar? Anyone go? Any recording?

[Regenallotment]

gutted I missed it, I was at work when it was on, I mistakenly thought it was this evening when I signed up.

Highlights anyone?

Any idea if there is a recording? lynmynott might know?

thanks 🌱

[Wetsuiter]

it was v good, and worth the time to watch. When I 've remembered what they said about recording, I 'll come back.

[arTistapple]

I listened to the whole thing. Most info was enlightening, much of it elaborating on what we discuss on the forum. A couple of gems to help my understanding which I would ideally like to check with anyone else who heard what I thought I heard. I hope if it’s been recorded it’s edited for some ‘public’ contributions to be kept private. Hopefully someone else more confident about what was discussed/presented will also answer this post.

I will be watching for comments too.

[pennyannie in reply to arTistapple]

I was listening while reply to forum members on here - maybe I can help ?

[arTistapple in reply to pennyannie]

Thank you pennyannie. Virginia I thought was very good. She said something like ‘the body in health makes and uses about 100 mcg of T4 a day. Therefore if you are taking more than 100 mcg levo, the body does not need it. It’s wasted’. Of course by the time I got over the shock of that statement (best I can to quote) I may have missed something else. Did you hear her say that and if so what did you think? I know that kind of does not recognise or indeed properly acknowledge the many hypos who do exceed this dose but it resonated with me and my experience. I can’t get above 100 mcg without being very ill and it only managed to drag my T3 up to about 50% with T4 well over range and an increasing ratio to T3. It resonated too with other research we have come across on the forum. I think it was jimh111 who pointed out research that very high levo intake was related to some cancers. She also was clear, in her opinion that supplements and diet were very useful but not a ‘cure’. I thought that was very realistic. Other speakers agreed. Although, as she works for Regennerus she might have been a little bit bias re: the genetics. However the previous speaker, doctor and nutritionist was saying pretty much the same thing - I thought. The genetics are pretty much vitally important. It’s always been less assertively said. Also the sense was that T3 is a total done deal as far as outside the NHS goes. It seems to be not controversial at all outside the NHS was my impression. Keen to hear what you have to say!

[pennyannie in reply to arTistapple]

On that first point re T4 of 100 mcg a day - in theory that is what I believe is taught and I always write :-

A fully functioning working thyroid is said to support us daily with trace elements of T1, T2 and calcitonin + a measure of T3 at around 10 mcg + a measure of T4 at around 100mcg.

With T3 known to be around 4 times more powerful than T4 :

So you could argue that In a perfect world, as the thyroid fails, a better treatment option would therefore be a T3/T4 combo tablet so we wouldn't necessarily have to be taking an excess of T4 as per Jim's research.

But we know T4 does not top up a failing thyroid and that we likely need a full replacement dose but quite what anybody's actual thyroid supported them with is an unknown - as blood test results are somewhat limited and ranges too wide.

We do also know that once on T4 - monotherapy the T3 is not restored as high as those people not on any T4 hormone replacement - and T3 is down regulated and we get the symptoms of hypothyroidism.

If T4 is the only treatment option the dose is increased but this does not necessarily restore the patients health and well being as the belief tht more is better does not work with thyroid hormones and you risk down regulating the T3 further.

Think of making a scone - basically plain flour, and add a decent measure of baking powder if you want a nicely risen scone you can cut in half. Forget the baking powder and it's too heavy - I liken this rightly or wrongly to adding in T3 to a T4 prescription - it's a fine balance as can be seen by the number of forum members on here trying to find the right ratio of T3 and T4 for themselves.

I take NDT - a mix of T3 and T4 - and liken it to self raising flour !!

Does that help with the first question ?

I wonder why you can't increase your T4 above 100 mcg ?

Adrenals, vitamin and minerals, digestive issues, leaky gut, issues with fillers, other health issues and drug interactions, hormone resistance ?

As for the second conversation regarding genetics I'm afraid I lost interest as it became a case paying people to validate one's health issue and where do you go with that ?

Treatment within the NHS system where they still refuse to run the relevant tests for hypothyroidism, so what is the point, unless you can afford to buy into the 2 tier health care system that currently faces us.

Sorry - but I think I found myself loosing interest by then - though the patient who opened up about the diabolical treatment she was receiving would be one that would have been of interest to Jim's current complaint regarding a certain London Clinic.

P.S. I got the impression from Lyn's opening statement regarding T3 that the guidelines maybe changing but not for the better of patients ????

P.P.S. I'm without a thyroid post RAI thyroid ablation for Graves back in 2005 and now self medicate and find I'm ok on 1+1/4 - 1+3/4 grains -different batches over 6 years - of NDT daily - so that's say around 1+1/2 grains daily = 13.50 T3 + 57 mcg T4 daily.

So If you work on the assumption that T3 is around 4 times more powerful than T4 this extrapolates out to around 4 x 13.50mcg + 57mcg = 111 mcg ?

[Mollyfan in reply to pennyannie]

Thank you for all of this…. Sadly I missed it too.

A couple of holes in the “100mcg levo is the maximum” argument in my mind

1. The body makes approx 100mcg T4 PLUS 10mcg T3. This idea completely ignores the T3 which, in most studies, equates to about 30mcg T4. So 130mcg would be a full replacement amount not 100

2. We all know that levothyroxine is not 100% absorbed and varies between patients. Therefore it would be significantly higher than 130mcg.

Or have I completely missed the point?

[pennyannie in reply to Mollyfan]

I don't think it was ever ' said ' that 100 mcg was the maximum dose -

but that 100 mcg was roughly what the thyroid produced on a daily basis along with around 10 mcg T3 :

[Mollyfan in reply to pennyannie]

sorry if I misunderstood….. I was responding to arTistapple when she reported that someone said any levo taken over 100mcg would be “wasted”. I would love to watch it.

[pennyannie in reply to Mollyfan]

No worries :

I believe the majority of the content is being made into a video and this will obviously include the scripted speakers -

so just wait and hopefully - you will be able to watch the meeting and see if I have total recall and then you can mark me out of 10. !!

[Mollyfan in reply to pennyannie]

🤣🤣🤣

[arTistapple in reply to pennyannie]

Me too.

[arTistapple in reply to Mollyfan]

Thanks Mollyfan for your comments. I think the “in health” was the bit that confused me and the “waste”. Off course as both you and pennyannie have reminded me, we are not in health and this statement (and as I say I can’t quote accurately as I was taken aback by it, having never heard it before) therefore is too simplistic. I am always looking for simple! Still it’s got me another piece of the jigsaw in my understanding. It all helps.

[jimh111 in reply to Mollyfan]

Your points are valid. I can't remember how much T4 the thyroid secretes but if you replace it with tablets you must account for absorption which varies considerably but is at a guess around 60%.T3 in the blood is around 4x to 5x as potent as T4 but in tablet form 3x as potent due to different absorption rates and half lives.

[arTistapple in reply to pennyannie]

Right between you and jimh111 i have a lot of understanding to do. I will answer you first.

Why can’t I increase my Levo/T4? Really I do not know the answer to this yet.

I have reinstated my vitamins and supplements which went haywire after attempting to titrate levo up. First I went for the full 125 mcg which I quickly reduced to 112.5 mcg but honestly, I really could not deal with the symptoms. Maybe I could have stuck with the 112.5mcg but as my T4 was running at 126% and Medichecks had issued me with a dire warning that I should attend A&E if I got heart symptoms, I guess it scared me. Two months later I got heart symptoms (changing my meds again -T3 very low and very brief - because I was in an hurry - thoroughly disabused of that behaviour now) and over the next four months (i think) three more visits.

Adrenals. I am sitting here looking at the test kit. I am building myself up to reading the instructions. So that is being looked at.

Digestive issues. Only the ones I think are directly related to hypothyroidism itself. I have had gut problems for many years and I am always manipulating diet towards no problems - but sometimes not. No coeliac but leaky gut etc still a possibility.

Other health issues. Again it seems to me everything is hypo related, blood tests etc do not appear to show anything else unrelated and I have had a lot of those recently because my Gp wants to send me to a CFS/ME Fibro Clinic. Although I have had heart problems and CHD treatment it seems to me it’s hypo related. It magically improved ginormously with levo.

Drug interactions. I take one other medication (Amlodipine) at the opposite end of the day to my levo.

Hormone resistance. Getting there. Adrenals first to see what’s going on with that.

Genetics. I think the same as you and it is unlikely this will make any difference to NHS treatment, especially in the area I live. But I am now thinking it’s a piece of the jigsaw I just might be interested in. If my T3 experiment had worked I would not bother. It was distressing and I just want to get as full a picture as possible before attempting it again.

Yes the NHS is neither up to speed nor showing any signs of improving our treatment. AND we do not know the outcome yet of the new guidelines, which could be worse.

Thanks for the info on your self medication of NDT. It does seem remarkably close to the 100 mcg of levo they were talking about yesterday.

The patient who opened up. Yes jimh111 will be interested in that clinic. How come this endo was insisting on the ‘heavy duty’ drug? Surely that would have been a psychiatric decision. However I may have got that wrong/confused. As I said I hope that will be removed before publishing the webinar.

[pennyannie in reply to arTistapple]

Not really - as my dose is now not T4 heavy as the NDT is in a 1/4 ratio of T3/T4 :

I take 13.50 mcg T3 ( which is said to be around 4 times more powerful than T4 ) + just 57 mcg T4 : so I am not T4 heavy and now balanced as I am without a thyroid gland and main lining - as I haven't the gland messing things up.

On 100 mcg T4 my T3 came in at 4 - 25% through the range after 24 hours with my T4 coming in at 90- 100 % through the range.

On 125 mcg T4 i managed a T3 at 5.50 and felt better but because my TSH was suppressed I was told i had to reduce my dose when I became 65 - so therein lies another stupid ruling that as we age we need less - and this was when I started to become extremely poorly and referred to a a conundrum - details on my profile page.

Now after 10 / 12 hours I measure and my T3 is at around 90% - 110% through the range and my T4 is at around 25% - 30% through the range and I can function better.

I've never waited 24 hours before taking a NDT reading as I read when taking anything containing T3 you test at around 12 hours - I would imagine if I waited my T3 and T4 would both read low in the ranges

T4 is basically inert, and a storage hormone and I believe if you haven't any thyroid hormone production of your own - you need a bit of T3 to kick start the process of metabolism - and I liken it to a pilot light having been repaired/replaced when I introduced a little T3 to my T4 monotherapy treatment.

[arTistapple in reply to pennyannie]

Yes I see what you mean by not T4 heavy. And I see that I described it wrongly. Probably on overload yesterday with all the excitement of the webinar!

[pennyannie in reply to arTistapple]

The science is all well and good and one way of trying to understand and explain what is happening - it's clinical, unemotional and theory :

Living with the diagnosis is a whole other area which is patient centred, coloured by emotions and the complexities of all of us as individuals.

It's pretty evident from what we learn from this amazing forum that no two of us are the same though diagnosed with the same health issue - and by reading and asking questions we have to become our own best advocate.

[arTistapple in reply to pennyannie]

You are absolutely right. We are so privileged to have this space to ask questions and relate our experiences. In fact I have never been a part of so many interesting conversations EVER. It is an amazing forum. Three cheers for Lyn Mynott (and no doubt others) for having the tenacity to create it.

[pennyannie in reply to arTistapple]

Before the turn of the century all treatment options were in the doctor's tool box to assist him/her in your treatment if hypothyroid and still symptomatic even when yo were in range etc etc -

In the last 20 odd years all treatments options for hypothyroidism other than T4 Levothyroxine have been removed from the primary care doctor's list of options so even the most knowledgeable of thyroid doctors can't help his/her patients in the current climate.

We are the minority in a very large pool of people diagnosed hypothyroid and since T4 monotherapy seems to work for the majority, some 80% of those taking it, it is an uphill struggle unless you can afford by go private and buy / try other treatment options to find the one tht suits you best, or read up and Do It For Yourself.

All we can all do for ourselves is be as well as we possibly can and this forum is an excellent platform for continued shared learning and understanding on a very complex health issue unique to each individual suffering the consequences.

We are all a work in progress need to keep an open mind as we age and understand better our own uniqueness.

[jimh111 in reply to arTistapple]

I'll copy in pennyannie to this reply.

I missed this webinar because I was listing to this one twitter.com/ThyroidFed/stat... as it was by one of the authors of this study healthunlocked.com/thyroidu... .

it was very annoying!

I think thyroid support groups have slipped up this year because they all had events on the same day. I would have liked to listen to the Thyroid UK webinar live and also go to the Thyroid Trust walk in Broadstairs. I will mention it to them in a few weeks time when they have had a rest.

We each secrete different amouts of T4, I guess 100 mcg is a reasonable average. Taking more T4 will increase T3 levels as there is more substrate (the T4) to convert. This is why people can become thyrotoxic on too much T4.

A point always missed and something I always bang on about it that it matters where the T3 is coming from. T3 from type-1 deiodinase (D1) is produced near the cell membrane and is a source of circulating T3 along with T3 from the thyroid and tablets. T3 from type-2 deiodinase (D2) is produced in the endoplasmic reticulum which is close to the cell nucleus. This T3 takes time to exit the cell and provides higher T3 saturation levels at the receptors. D2 regulates local T3 levels in tissues such as the brain, skeletal muscles and brown adipose tissue. D2 T3 makes its way to the blood and is the main source of circulating T3.

D1 is up regulated when hormone levels are high, vice-versa for D2. If hypothyroid patients are put on levothyroxine monotherapy they have higher fT4 and get proportionally more T3 from D1 and less from D2. This deprives some tissues of T3 to a small extent, most patients seem to be reasonably OK with this and do OK on levothyroxine monotherapy.

Higher fT4 within its reference interval is associated with increased cancer risk. For this reason I now believe levothyronine monotherapy should not be routinely used.

[pennyannie in reply to jimh111]

Thank you -

what you missed yesterday I believe Lyn already had knowledge of - and would think this section of the upset lady patient removed before Thyroid UK post the meeting.

it was about a man featured in a video I saw on YouTube around a year ago and the opinionated, biased, misinformed content was taken down overnight because of complaints lodged.

[Wua13262348 in reply to jimh111]

I'd value your opinion on my situation as I believe what you have just said has a bearing on how I should aim to proceed, when I have my first Endo appointment in July with an NHS ENDO who has written the guidelines for Primary Care for Central Hypo in my Health Board in Scotland. A forum member the other day has confirmed my Health Board does not prescribe T3 despite the guidelines in place in Scotland, hard won by Lorraine Cleaver. I'm sure this will sound garbled, but here goes:

I had a reading , 24/2/22, denoting Central Hypo as TSH was 4.02(0.27-4.2), FT4 5.5(12-22) and FT3 6.5(3.1-6.8) . I had already had one ft4 of 10 and another of 10.6 , at the run up to Covid lockdown, February and March 2020. I started 25mcg levo tablets with mannitol, when I actually have an enzyme deficiency for mannose, March 2022.

Fast forward, 21/11/22, on 75mcg liquid levo: TSH0.97 (0.27-4.2), FT4 18.8 (12-22), 68% and FT3 5.9 (3.1-6.8), 75.68%. From the same blood draw, Selenium 441.18% through the range , supplementing 200mcg selenomethionine from 1/8/22.

Turns out I have up-regulated Selenium because I have a double , homozygous CBS mutation. I have one rapid converter , and one poor converter, at Deiodinase 1. Definately not at my sweet spot with this dose and reading. Definately don't seem to have overtaken my sweet spot on the way.

Unfortunately my next reading 20/3/23, I have a raging U.T.I. and Vasculitis in my legs ,which they firstly mis-diagnosed as a fungal infection. I was also forced to take Zentiva liquid which floored McPammy's TSH, upset Jaydee and that of another forum member. Zentiva liquid is not interchangeable and seems to be stronger. I dropped supplementing Selenium 1/12/22, and re-tested it from the same blood draw as the following thyroid test:TSH 0.14 (0.27-4.2), FT4 20.3 (83%), FT3 5.2 (3.1-6.8), (56.76%). I think the Zentiva was stronger , so raised the FT4. The 2 infections have floored the TSH and lowered the FT3. Selenium, unsupplemented for c. 4 months, was 142.86% through the range. I had hoped to see from this reading if the reduced selenium would reduce the FT3, but I believe it has been the 2 infections which have lowered it.

CBS has implications with cancer. I tested my amino acids and am deficient in both Glutamine (minus 0.36% through the range) and Arginine (minus 1.42%). Deficiency in glutamine makes sense of my leaky gut. However, supplementing Glutamine is a cancer risk. Arginine stimulates the pituitary gland to produce Growth Hormone. As an adult, my feet have increased in size from a 6-9. Growth Hormone over-secretion will be responsible for this. Arginine, at the moment, appears to be suppressing Growth Hormone, rather than over-secreting it. It is Glutamine and arginine which regulate gene expression of both transcription and translational levels. Since Arginine is involved in multiple metabolic processes , an Arginine deficiency has the potential to disrupt many cellular and organ functions. CBS , is the first step in the transsulfuration pathway and leads to either Taurine or Glutathione production, but not both. Glutamine is the precursor to Glutathione. I make 90.24% taurine. The BH4 enzyme can be depleted with CBS mutation, and is used to make thyroid hormones and regulate neurotransmitters, among other things. BH4 is a co factor of brain specific Tryptophan (5.93% through the range).

My brain isn't getting to grips very well with what you pointed out, but I think it may be key to my situation and how I should be dosed?? A high FT4 is a cancer risk. I think if I could get rid of the UTI which I think is now likely to be nephritis, I think??? my FT3 would likely rise again to 5.9. This is not my sweet spot. In 1989 my TSH was 0.8. I believe this must have been my original set-point. I have normal DIO2.

Any thoughts on whether I should be fighting an anti T3 Endo for the addition of a little T3 from the get-go? I think I must have had Thyroid bloods in 2014 clearly indicating Central Hypo , and if so ,G.P., and eye specialist have been negligent. My optician flagged up a suspected pituitary tumour in 2014. I didn't get an MRI or an endo appointment. My bloods from 2020 are suggesting a pituitary tumour. Because of this , I may get some leeway if there has been multiple negligence. I guess I may be wondering if , from what you are highlighting, my dio2 will get down-regulated???

Edit: CBS mutations cause the thyroid to be underactive and you lose Vit B12 too quickly.

Edited again! Forum members should be aware that selenium is very relevant where cancer is concerned. A lot of up and coming research is being done as regards Selenoproteins.

[jimh111 in reply to Wua13262348]

I think every patient should be given some T3. I'm afraid your situation if much too complex for me to grasp at the moment, I've never heard of CBS. Your 2022 results don't suggest central hypothyroidism though as your TSH is not low with a high normal fT3. I think you should put this question in a separate post as it's complex and not relating to the webinar.

[Wua13262348 in reply to jimh111]

Think it might be hypophysitis, or similar. Not looking for any comment on that as it is not relating to the webinar, and not intending to highjack the post, nor invite comments about it on this post. I am mentioning hypophysitis, as there will be other members who may have this as a cause of their hypothyroidism, but accept that probably most members won't have heard of it. Members can google it to see if it might be relevant to them. Any members with experience , or diagnosis of this please reply by private message only, to avoid highjacking this post, and going off topic.

[arTistapple in reply to jimh111]

jimh111 unfortunately I am still thinking about this. I am trying to work out if it is indeed similar to what was being said on the webinar; perhaps being expressed differently. They were talking about ‘transporters’. It could still fit but I need more time to comprehend. Trying to work out how much this means to the patient as opposed to the science. I do like to understand but I would always like to just improve my situation. Thank you for your explanation and taking the time to attempt understanding on our behalves! I may be back with another question.

[Serendipitious]

Sorry what webinar was this? I thought there was one today.

[Regenallotment in reply to Serendipitious]

there was a Medichecks one today (also during work) and Thyroid UK did one yesterday. Hopefully someone will post a link for us 🌱

[Serendipitious in reply to Regenallotment]

Oh I thought this webinar was in the evening. I've missed it and there was a 20% off thyroid tests offer if you watched it.

[FoggyThinker in reply to Serendipitious]

I was wondering the same thing! Thanks Serendipitious for asking and Regenallotment for answering, and the original post (I think my news feed is switched off )

[TaraJR]

Yes I watched - Lyn and Louise had a very long day with all they had to do!

Some really interesting information and discussion. It was being recorded and Lyn said it would go on to the TUK YouTube channel.

[Regenallotment in reply to TaraJR]

brilliant thank you 🙏