A fascinating article by Chandler Marrs, PhD, about conditions and drugs that cause demyelinating disorders and T3s healing properties. She also talks about side effects caused by Gardasil and Lupron. We are getting more and more research showing the benefits of adequate T3 in the body and just how important T3 is to many processes in the body. PR
"It is always amazing to me when seemingly disparate research articles come across my desk and within an instant there is a shift in understanding. That is what happened over the last two weeks, community members from different disease groups shared research articles. From the Gardasil community: CNS Demyelination and Quadrivalent HPV Vaccination and from our friends at Thyroid Change: Triiodothyronine Administration Ameliorates the Demyelination/Remyelination Ratio in a Non-Human Primate Model of Multiple Sclerosis by Correcting Tissue Hypothyroidism. And I connected some dots."
Marz, she is a good read, a very intelligent and capable woman who is committed to championing women's health issues. If you remember she wrote recently about the fact that not enough research is being done on how drugs affect women's bodies. PR
Well, I would appear to be one of the people this study/studies is talking about, since I have subclinical hypothyroidism and trigeminal neuralgia, a demyelinating neurological condition. However, previous to getting said TN I never had a vaccination, other than the ones I had forty years ago, and the closest thing to drugs I took was PPIs for some months, a couple of years before I came down with the TN. I was probably one of the most unmedicated people in the Western world so I don't know how I fit in here. I kind of disprove these theories in one fell swoop. Dare I say it sounds like vaccination terror a new way?
Yes, PR, I thought that was an interesting idea. I have filed it to the back of my brain for a quick whip out with the doc if I think it might help further down the line. What DID interest me was the idea that the thyroid problem may have caused the TN in its own right. Right now I work on the theory that it went thyroid - poor stomach acid - malabsorption - (then an operation, vegetarianism and some other things, like past PPI use) - low B12 - trigeminal neuralgia. But I have read one other place that thyroid can cause B12 disruption as and of itself (and I've read the opposite from Martyn Hooper - who to believe?).
The idea that low T3 might be demyelinating is a very interesting one that I intend to look into, so thanks for leading me to that, even if I'm not convinced by the rest of the argument!
Actually, PR, do you know if UK doctors can prescribe T3 on its own? I am absolutely sure I have seen conversations on this subject but I've never read them as they weren't relevant to me. Now they might be!
I'm going to stick my neck out and ask to have my T3 measured, along with my thyroid antibodies, but if the T3 does prove to be low I could use this paper to have the T3 treated on its own, if that is doable, just as an experiment, to see if it helps, although how I'd know right now I don't know, as I am on B12 shots that have sent the TN into remission. Oh why does life have to be so complicated?
So can they give just T3? And what T3 do I need to have measured exactly, to uncover a deficiency?
There are some UK doctors that will prescribe T3 but I don't know who they are. You probably need to get FT3 and FT4 measured to see where you are at. If you do try it you've read enough to know that you start with a small dose and go slow. PR
So how did it go with your Doc. Did he agree with testing the FT3.....haven't we all been saying this from the very beginning ? T3 is the most active of the thyroid hormones - needed in every cell of the body....
Hi Marz - it went as expected - we had another big fight, covering the same ground as before. But this one was extra special, because I think he must have been snorting something beforehand - he came out with some real corkers. I was barely in the door before he said "So how are the headaches?" I'm sitting there like an idiot, trying to think if I had been complaining about migraines or something, from the withdrawal, last time I'd seen him. I had to give in and ask him, to which he replied, "You know, the headaches, your neuralgia." And it went downhill from there...
But the good news was he wanted to test for antibodies himself and seems to be of the opinion that if I have high antibodies we should just treat it to "nip it in the bud" (whoever first coined that phrase has a lot to answer for). After that however, not so good. He didn't know why I wanted to test tor T3 and I told him about the demyelination/TN/T3 connection, so first I had to put up with him saying that TN wasn't a demyelinating disease (I lost my temper there and got 'adamant' that it was) and then we had to hash over all the old B12 stuff again - how I didn't really have a deficiency and it's not B12 that's helping my TN, it's just an epic coincidence, which isn't at all epic as far as he's concerned. Blah, blah, blah...
I was told that the study I'd taken about T3 meant nothing because it was on capuchin monkeys. I retorted 'They're ALL on monkeys, or rats, or mice. They don't experiment on humans.' Which is true, and he knows it. But he fell back on saying he didn't know if he could get the T3 tested. I assured him that the NHS does test it, but he still wasn't sure if he could get it. I think he's worried that the lab will refuse him, which is a distinct possibility. If it does then I'm stymied. After THAT I threw cortisol testing at him, so we had another round on that one, but by then he was getting fatigued so he said he'll test me if I'm determined to have them, which was good, technically, except as usual he set me back about four months psychologically.
I always come out there feeling like an idiot, as if I'm believing a load of unsubstantiated rubbish and making foolish tenuous connections. It took my partner to point out that without my research, and fighting, I'd still be on 1200mg of anticonvulsants and in pain and would have no idea I had a thyroid problem. Instead, thanks purely to my own efforts, I am on 700mg of drugs (and dropping), pain-free and now know there is a thyroid issue which I can treat.
But he even put the fear of death into me about dropping my drugs. Because he is SO sure the B12 is playing no role, he's now saying that when I come to try and drop the Carbamazepine (I've only lost Gabapentin thus far) the pain may come back. Thanks, doc, cheer me up some more.
I was furious - no, upset - for days after, and am only now beginning to pick myself up again three days later, but I can't now shake off this fear that he may be right and I won't be able to get off Carbamazepine.
Oh, he's such a di*k. How is it helpful to put anxiety into a patient who's already heavily medicated, struggling with being hypothyroid on top of that, plus is out on a limb on her own with a disease no-one understands - least of all you, doc.
There, bet you're sorry you asked now! I was thinking of writing our legendary conversation up for the forum, but I don't think I'm calm enough yet, as you can tell!
But yes, Marz, the short answer is I am getting my blood tests, hopefully, on this Monday coming, unless, of course, he is just giving himself time to find a way to refuse me them by blaming the lab or some such. The last time I wanted new coeliac tests he pulled out a biochemist to try and talk me out of it - no kidding. So Monday might just be more fun and games...
That sounds like an interesting title - going to look it up on Amazon. In fairness, I don't think the doc does consider Levo a drug; it's me who's not keen to take more 'medication' while I am still on Carbamazepine. I'm hopeful that I may get off these. If I can, I'd feel more confident about trying thyroid treatment.
Ironically, he seems to belong to the school of 'nip it in the bud' when it comes to subclinical hypo, so I am lucky there. No, I'll only have a fight on my hands if I want to do anything unusual with the treatment - if I want straight NHS treatment, I'll be fine.
Hi, Marz, me again. Don't suppose you have a name for the author of the book, do you? I had a look but the only one I could find that looked modern was hugely expensive, or there was an old one from 1962 (also expensive) but with no details at all. If you've got anything else I could use to track it down that would be great - ta!
Yes it is hugely expensive - you found the right one. You could look inside on-line and read the contents which is quite illuminating in itself ! Then you can read about the various contributors and from there you may find their work on-line as their names are mentioned in each chapter. Yes the first edition was in 1962.
Thanks, Helvella. Still outside my budget though, for a sight unseen title. What we need here is a computer hacker who could steal it for us and put it on-line. Not that we would do that, of course. That would be wrong.
Chancery, You need TSH, FT4 and FT3 tested. If TSH is low, FT4 is high in range and FT3 low in range it indicates a lack of conversion. T3+T4 combination sorts this out. Some CCGs have instructed GPs not to prescribe T3 without recommendation from an endocrinologist or other specialist.
Thanks, Clutter. I've had TSH and (I think it was free) T4 measured so that only leaves free T3 then. My TSH is over range and my T4 was just making it and no more (10 when bottom was 9), so I currently have subclinical hypothyroidism, according to Vanderpump.
Tomorrow I'm going to ask doc to check antibodies and FT3, so I need to know why I'm asking! That's why I was curious about FT3. This paper helps a lot, since it shows that demyelination could be connected. It gives us a reason to request a test!
Ah well, that horse has bolted. Too late now. I DID ask him for all three the first time, but he said, and I quote, "The NHS doesn't do that", with just a hint of 'Ask us to gild your house in 24ct plate, why don't you?' I'm just going to have to take a T3, if he'll give it, and lump it. UNLESS, there is some good argument I could give to have them both redone? How could they mislead being apart like this? What kind of mistake could we (he!) make by taking them separately like this? TSH and T4 were done a month ago. If I can quote some horrible potential disaster it might just sway him...
Thanks for that, Humanbean - that is a VERY comprehensive document. Too comprehensive for me tonight, on the first of my many ten day cycles of tablet withdrawal! Too many shakes and a brain jumping just as bad. However, it's something that's 'worried' (maybe too strong a word!) me many times: how does my insomnia affect this?
My last bloods were done about four in the afternoon, I think. I don't get up till between 1 and 3 pm, and don't go to bed till between 4 and 5 am (I'm currently trying, for the umpteenth time) to get them more 'normal'. Since I've been like this for about a year, have my circadian rhythms changed? Are afternoon blood draws like morning ones to me, so are my thyroid tests fine? Or did I have my thyroid tests taken at completely the wrong time of day and therefore my TSH might be way worse than it looks? Am I actually walking around with a ten when I only think I have a five????
I used to have the same sleeping pattern, and it really has made my life very difficult. Some suggestions for you to research :
1) Seriphos (helps some, but not others)
2) Rhodiola Rosea (take it as early as possible after getting up)
3) Melatonin (must be imported because it isn't officially available over-the-counter in the UK)
4) 5-HTP (which helps depression first then eventually helps sleep by raising melatonin - mustn't mix with other anti-depressants)
5) Holy Basil (also known as Tulsi)
6) Valerian
7) Diphenhydramine Hydrochloride 50mg (not good for long term use)
8) Methylated B vitamins
9) Magnesium Citrate
10) Look into using a tinnitus relaxer (or make your own out of an MP3 player and a small speaker, and download soothing sounds and noises off the web).
Don't expect to get "cured" by just one thing, you will need a multi-pronged approach. I haven't been helped by all the above things but I have tried them all.
My sleeping habits are still not great but they have improved immensely over the last year. I think that improving my nutrition levels has helped a lot.
If you want more details about any of the above, send me a PM.
That's a great list, Humanbean, thanks. At the moment I am in withdrawal from Gabapentin, so there is no point in me trying anything other than the basics, but if I manage to get my last remaining drugs down (Carbamazepine), then this list will be invaluable because my brain should be functioning more normally then and anything I take should work the way it ought to, so I'm going to come back to it then. I'm copying and pasting it onto my computer so I don't lose it!
Ooh, that first one is great, Humanbean, just what I'm looking for, thanks. X
I was at the doc's today, having an epic fight, as usual, over getting my FT3 tested and Cortisol too. I used the argument that I have such life-damaging insomnia, with the adrenaline 'attacks' I get every night as soon as I fall asleep. I told him that I think they might be indicative of cortisol problems, hence me wanting it tested. I DIDN'T mention that I've discovered Cushings Syndrome and I have most of the symptoms, including the hump on the back.
It's probably not Cushing's but I do really want to get the cortisol tested because I do feel it will give us valuable information. But I can imagine his face if I bring up Cushing's; I'm hoping that if the cortisol is okay I can knock it off my list without ever mentioning my suspicions. I swear he winces when he sees me in the surgery.
I looked as though I had Cushing's when I was in my teens, and I had lots of the symptoms of Cushing's. The gross physical signs very, very slowly disappeared or reduced a lot over a number of years after I started smoking (when I was a teenager). I'm NOT suggesting it as a cure though!
In recent years I've done an adrenal stress profile saliva test a couple of times and my total daily cortisol levels are well above the top of the range with most of the over-production being in the first half of the day. It's utterly miserable waking up while sweating profusely on a regular basis, waking far too early with heart hammering and going too fast, and feeling very anxious and jittery with rocketing BP at 4am. But I've avoided seeing anyone about it. I hate being given the brush-off, so I just try and handle it myself. I think the problem has reduced since improving my nutrient levels.
Yeah, this is the weird thing for me too, Humanbean. I look as if I might have had it as a teenager. I suddenly piled on weight at around 14, and never stopped gaining. I just resolved that problem by dieting intermittently. As you probably know, as a form of weight control it's sadly less than ideal. I had the purple striation on my hips from sudden weight gain but the only trouble is that could be puberty, except it wasn't really. I had started my periods at 11 so I think puberty was well under way! I also developed facial hair at 14 too - God damn it.
But I've always suffered with the central obesity thing, all round my 'pregnant' belly while keeping quite slim legs. But it's really more recently, when I noticed the hump. This was well before I'd read anything about Cushings'. I first noticed it when I had gallstones and put it down to my hunched, pained stoop, but it never went away after the op. So then I put it down to a leftover, then it must just be age, then I just tried to ignore it. Until I read about Cushing's. I actually tried last night to stand up REALLY straight, in case it was a posture thing and the only way I could get rid of it was by pushing my arms right back. NO-ONE stands up straight like that, so there is a definite hump there.
My other weird symptom is ringworm. Not long after I developed TN I came down with ringworm. Never had it in my life before, don't own a pet, don't have any children. NO idea where something like that would come from. I asked my doc because I hate unexplained illnesses; they always make me suspicious, but he was blasé and indifferent as usual. But then I discovered a few days ago that fungal infections are part of Cushings and when I managed to track down more info on what they meant (suspecting the usual suspects of thrush etc) they actually specified ringworm, not tacked on last in a list either, but actually said, "such as ringworm" which they called "unexplained fungal conditions". Knock me over with a feather.
But like I say, the doc thinks I'm mad for wanting all these tests. He thinks they're irrelevant. This in spite of me turning up the fact that I am hypothyroid; he didn't test for it. And me turning up the fact the B12 worked on my TN when nothing else did. All irrelevant, he says.
I had to have another battle with him yesterday over me wanting T3 and cortisol tested and he's still spouting his nonsense at me, plus referring to my TN as headaches (it's in my mouth) and telling me TN isn't a demyelinating disease, and that Carbamazepine "won't cause cognitive problems". I don't know what he was on yesterday but I'm still raging. As you can tell.
Anyway, Cushing's - going to need a hell of a lot more evidence before I spring that on him. And god knows what lunatic things he'll say. I'm hoping the cortisol test might offer something clear that might cast some light.
I've chickened out of springing Cushing's on my doctors altogether. If I have it I think it would be mild, and I wouldn't get treated anyway. So why put myself through the stress of getting dismissed and ridiculed? It's happened so many times already I have to be absolutely desperate to discuss anything with a doctor now.
I sympathise entirely. Having researched it more thoroughly, I can't see how I wholly fit in. I seem to have either a mild case or a case of pseudo-Cushing's, which may just be the same thing a new way!
Either way, it involves adrenal exhaustion and doctors seem to think that's only next to using a Ouija board, so I feel VERY conflicted about bringing it up. However, the ringworm is beginning to run rampant and anti-fungals are not dealing with it, plus I'm getting more worrying symptoms like difficulty breathing on exertion, pain swallowing etc. I don't know if these may just be thyroidal, but one thing's for sure, I need something sound before I voice any concerns.
Wish you luck, Chancery. GP may have to be very insistent with the lab as they often decline to test FT3 unless TSH is suppressed. Labs don't really look for low FT3, they assume suppressed TSH means hyperthyroidism and test FT3 to check for high levels.
Hmm, Clutter, I see trouble ahead... (to be sung). That's why PR's paper could be invaluable. One of the few compensations for having a shi**y condition like TN is that it's rare and serious so there's no protocol for it, other than killer drugs. Subsequently, you can sort of whip it out and say 'We need this test as part of a neurological condition treatment'. You know, hinting we're doing something edgy and experimental here - which, ironically, we are.
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