Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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Thyroid Function...Labs May Lie

Discussion in 'Thyroid Dysfunction' started by xks201, Jul 1, 2012.

  1. snowman

    snowman

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    @Athene*, a couple remote possibilities come to mind: the glycine can increase growth hormone, and there may have been gluten or an intolerable filler in all the other magnesium preparations you've tried.

    Dr. Klenner used high doses of glycine in his protocol for MS which also worked for other neurological diseases. Have you tried glycine alone and had similar good effects?

    I'd be concerned about trying too much of anything until your endocrine status gets sorted out - I'd hate to find something caused an adrenal crisis if you're halfway to developing Addison's. If you're ok with sharing, I'd love to seet your adrenal lab values, if you've had adrenal cortex antibodies and an ACTH stim.
     
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  2. Gondwanaland

    Gondwanaland Senior Member

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  3. Athene*

    Athene* Senior Member

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    Thanks for this @snowman. Great info and analysis in your post and it concurs very much with my experience i.e. of polyglandular dysfunction - however, not a single antibody found (except for low coeliac antibody) over years and years of antibody blood tests. And even then, I often wonder if the gut biopsy was showing some atrophy in the lining from b12 deficiency and not coeliac disease. I'm gluten-free anyway, just in case.

    Anyhow, since the high-dose methylation supplements, the ovary function (which was indeed more or less dormant) is returning, though haphazardly thus far (better than nothing), and the thyroid is certainly improving the last four days - since reintroducing some t4 in the form of Erfa NDT (only 2 grains so hopefully not too much t4, as you say), I'm no longer icy..

    The reason I went on t3-only is that, just as you say, I came to the conclusion, (after countless hours of reading thyroid papers, sites, and forums) that I had a transporter problem of some kind - I guessed it might be a reverse t3 (rt3) issue (though I never got it tested because test was refused - endocrinologist didn't believe in it) and when I made the decision to try t3- only to avoid any possible conversion issues, I did quite well on t3 only for a good while. But perhaps I should have switched back to including some t4 sooner.

    About the adrenal side of things (and I'm detailing it all, as you have done, just in case anybody else benefits) I have needed hydrocortisone for almost two years now (plus iron at times) to support them, even to enable small doses of thyroid meds. But, I have now managed to slightly lower my hydrocortisone 20mg to 18mg over the last few weeks since methylation protocol and will try reducing by 2mg every few weeks and see how I go. I feel I have too much cortisol at times now, especially in the evenings and night time - big energy surge, just when I want to sleep. Thankfully I no longer have incapacitating weakness in the mornings anymore, though it does still take a few hours to get the energy going. And I do still have to work on the circadian rhythm disruption. But I'm delighted to be sleeping at least 6 hours without a break (even though it's still at the wrong times. Before, I was getting 3 hours straight, sometimes less).

    I can't believe the amount I've been able to do in the last few weeks - yesterday again, a long gentle walk and coffee with my husband (he's utterly stunned at me being able to this) and then I made dinner when we got home. (Ok, I did get painful pins & needles in my feet and suddenly horribly achy and sweaty at the end all this), but I took some extra mfolate and mb12 and I'm okay again today, if not quite as energetic - nothing like as weak and disabled as I used to be after even 10 minutes washing-up. I really will have to go easy though. I can see how easily it would be to crash again.

    Thats' really interesting about FMN - I must look into that more...and I'm sure I'm not home free just yet...

    I'm hoping that if there was any immune-function issue that it will settle now that the body has what it needs to take care of itself. It's no wonder the immune system misdirects itself and creates antibodies, in starving bodies that are unable to fight pathogens normally...

    I hope my experience so far will be of some help.

    The main thing that helped (and helped dramatically) was jumping up from low-dose mb12 and mfolate, but I do plan to reduce eventually. For one thing, it would be too expensive to continue.

    B12oils might be an option. You mentioned the B12oils guy. He believes the ME methylation issue is due to a lack of b12 plus B2, not just b12. He's called Dr Gary Russell-Jones (biochemist with 25 years of b12 speciality apparently), and there's a good thread on him and his oils here, if you want to read how others got on:
    http://forums.phoenixrising.me/index.php?threads/transdermal-b12-oils.33172/
     
    Last edited: Mar 14, 2016
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  4. Athene*

    Athene* Senior Member

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    @snowman, thanks so much for the warning about this. I really appreciate you sharing your knowledge and I will save your posts for future reference.

    Yes, I have 'some kind of adrenal insufficiency' (endocrinologist's words), though 'certainly not Addisons'. Because of my symptoms he was open-minded enough to prescribe some temporary hydrocortisone until my thyroid levels are good, even though the usual endocrinology tests were normal i.e . ACTH 'very good', and an absence of adrenal-cortex antibodies. He did a 24 hour urine collection test in hospital and analysed that too and never gave me the results, said they were 'normal'. This was all done after 14 years on useless levothyroxine prescribed by a different endocrinologist, leaving me severely weak and hypothyroid (at the time I knew nothing about thyroid and I trusted doctors) and collapsing to the floor unable to get up.

    Before the Addison's tests I knew instinctively there was an adrenal issue because of the instant crashes I was having when any form of natural thyroid hormone or t3 was introduced and subsequently my immediate ability to tolerate them when hydrocortisone was introduced.

    Every couple of months he tests my FBC, sugar levels, liver, kidney, etc etc to make sure no adverse affects from the cortisol and I'm absolutely fine in that regard. He is really puzzled that my hydrocortisone serum-level is always fine - in the 600s, even after stopping hydrocortisone for a couple of days before the test. I'm not sure I trust the serum level, but I do seem to be able to get by on less hydrocortisone these days. (His prescription was actually for a max of 15mg daily. It was me who upped it to 20mg, and for six months, 25mg, out of sheer desperation). But 20mg is still a 'physiological' dose not a 'pharmacological' dose.

    My potassium level has always been good too (at least in serum: 4.3, though I do need a lot extra now with the methylation supplements. DHEA was 'perfectly normal'. He can be difficult to get actual result numbers out of, but he is very conservative and careful, and is a professor in a teaching-hospital, so I hope I can trust him. He did an insulin-stress test to test my pituitary function too, and thankfully that was normal. He did mention that my b12 deficiency might have caused some HPA axis issues, but he's too conservative to commit himself fully to that - not his area of expertise. However, he does keep saying when he reads my (serum) blood tests 'your adrenals are producing lots'. I guess serum can lie. Anyhow, he said last time he wants me to taper off hydrocortisone at this stage. So I will give a try (very slowly) and see what happens.

    Hope that's of some use. Sorry I don't have exact numbers, but I think he'd have told me if anything major was going on with regard to the actual numbers...(it's easier to get the thyroid numbers etc from the GP when she tests on his behalf).

    The other odd thing was that my TSH has behaved abnormally - i.e. raised with raised t4, and low with low t4, (and sometimes a normal pattern too) over the years, both on and off thyroid meds (including thyroxine, t3-only, NDT) since the whole ME situation arose. That's why he did the micro-pituitary scan (again 'perfectly normal'). I've had about three MRI brain scans too over the years, 'perfectly normal'. The 'perfectly normal' phrase always used to frustrate me, given I was hardly able to get out of bed. Thankfully that's changing now.
     
    Last edited: Mar 14, 2016
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  5. MAF14

    MAF14 Senior Member

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    I had a few things going on but I brought my TSH down to 0 with T3 only...

    Do you mind listing those foods you have daily?
     
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  6. MAF14

    MAF14 Senior Member

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    Do you remember off the top of your head what doses?
     
  7. MAF14

    MAF14 Senior Member

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    How are you dosing the HC? It may help to take your largest doses early in the day and then a very small dose in the evening - if you're not doing so already.

    IE...
    Dose 1: 10mg
    Dose 2: 5mg
    Dose 3: 3mg
    Dose 4: 2mg
     
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  8. Athene*

    Athene* Senior Member

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    Yep, doing that, thanks, and trying not to take any past late afternoon :)

    You asked somewhere (got email notification of question but can't find it here) if I tried simply upping the t3. I did, and got much worse, ended up in bed again, total weakness and hurting all over. The only thing that fixed it was more hydrocortisone.

    Now that I'm on NDT again (after high-dose methylation protocol) am doing good so far (and now on 18mg hydrocortisone). I'm now on almost 2 grains NDT...don't want to increase too fast. Was only able to tolerate 1/2 grain when I first took it a couple of years ago - adrenals buckled under the strain. Got to 2grains eventually with 25mg/27.5mg hydrocortisone, but felt dreadful again after a while That's when I switched to t3 only in case of rt3/conversion issues. It did help for another while, but could only ever tolerate 37.5mcg daily in divided doses and still felt Hypo.

    Am hoping I can now get the NDT into the cells without rt3 issues. Time will tell if adrenals, iron levels, will hold steady with the methylation help..
     
    Last edited: Mar 14, 2016
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  9. MAF14

    MAF14 Senior Member

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    Have you looked into getting RT3 tested through private labs? I took T4 and armour (seperately) while RT3 was still an issue for me and I was just spinning my wheels... If RT3 is still high it's likely you'll see no benefit from the thyroid meds.

    I don't know what I did to drop it but my RT3 is now on the lower end of the range. However, Im hesitant to start taking anything until I have homocysteine and a couple cytokines tested as they can block T3 receptors as well.

    Soo if you haven't already I'd suggest getting tested for lead/mercury, lyme, candida, RT3 privately if you can in the UK, homocysteine.

    I think my biggest issue through out the years has been treating my thyroid/adrenals with out delving deep enough to see what the CAUSE of my problems really were - which I hope you are not although I know it can be very difficult dealing with docs over there.
     
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  10. Athene*

    Athene* Senior Member

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    Thanks for those great suggestions @MAF14 - yes I've had the same experience with T4 and NDT on different occasions, most likely due to rt3. For now I'm going to save my rapidly dwindling funds and just assume I will have rt3 from time to time given my adrenal and current low iron issues (low iron since high-dose mb12 and mfolate triggered need for iron: increase in red cell production), and who knows what else! The rt3 situation changes with so many variables, as you say, so it might not tell much right now while so much is in flux. But I will chance my arm with the endocrinologist again and see I can't get it done out of interest.

    I think I'll be ok with regard to rt3 if I keep my t4 intake low. I'm planning to take some straight t3 along with (possibly less) Erfa NDT as I increase thyroid meds, but would like to keep some t4 in the mix.

    You're spot on about docs over here :) I've always tried to look at the bigger picture, but I could never get them interested. Forums like this one are invaluable.

    How are you doing now? What do you find is helping you most?
     
    Last edited: Mar 14, 2016
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  11. MAF14

    MAF14 Senior Member

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    I have been "okay". Still have brain fog and overall fatigue in general. I would say I'm about 65%. I can still do everything I need to do - wake up in the mornings, go to work/perform well enough but not great and socialize on the weekends but havent been working out for almost 5 months now - even when I was it was very sporadic.

    I'm taking a bunch of gut health stuff (probiotics, resistant starch, glutamine) as I have a few symptoms of Candida and other than that not much has "helped" me with my fatigue in quite a while. Im still waiting for my doctors office to get back to me in regard to getting some more blood work - as I mentioned I have only focused on thyroid/adrenals for too long so I now want to test lead, mercury, lyme, homocysteine and some inflammatory markers to see if I can get a better picture of what's going on although there's always the chance that all I need right now is more thyroid hormones as my Iron and adrenals came back in good shape.
     
  12. Athene*

    Athene* Senior Member

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    Sounds like you're doing pretty well. (I'm a long way from talking about working out, but I do hope you get back to it soon! :))You never know, the thyroid/iron/adrenal recovery might just do the trick. Those three deficits can be so intractable and as you know, all work in symbiosis.

    Your plan sounds like a good one. I would love to order a whole bunch of tests too, but I just can't afford any more. I've had to so much privately already. The docs here are pretty old-school and set in their ways, as you guessed! Do you have functional doc or naturopaths there? (sorry, I didn't look yet to see where you're from)

    I guess you've checked your b12 and folate levels? I tend to assume everyone on here is addressing methylation through mb12 & mfolate etc, but perhaps you're ok on that score...

    P.S. Had a quick look at your profile. I see you're aware of all the MTHFR possibilities
     
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  13. Gondwanaland

    Gondwanaland Senior Member

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    :woot:

    adding T3 to my protocol didn't help to budge it at all
    just adding coconut oil to my diet back in 2013 reduced my Hcy from 12.7 to 7.2 in two months. B12 didn't increase though, so I supplemented with MB12 and Hcy dropped to 6.8 after a couple of weeks.

    I have been eating 2 eggs daily for several months now, but right now am cutting back b/c I am sure I get inflammation/histamine issues from them.

    I watch carb intake, but have starch (mainly from white rice) in every meal, otherwise I can't function (estrogen/thyroid problems) - I must watch lectin intake very closely though

    I add fats to all my meals - olive oil, butter, lard for cooking - in small amounts, otherwise I get very spacey and my LDL increases.

    Protein in all meals - chicken, fish, pork, beef, cheese - also small amounts to avoid high ammonia.

    When my sleep is disturbed I take melatonin for a few days and it sometimes work, and also relieves inflammation

    I tried to season my food with turmeric, but it isn' only a methyl donor, it also dirupts biofilm, and what I take for overmethylation symptoms (gout) might be some bofilm thingy ( @Sidereal )

    Broccoli helps a great deal with inflammation, but I must watch to not eat it daily otherwise it makes me hypo.

    It is a juggling life... [​IMG]
     
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  14. Gondwanaland

    Gondwanaland Senior Member

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    Forgot to add coffee and whey protein powder 3-4x weekly
     
  15. MAF14

    MAF14 Senior Member

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    I live in the US on the east coast.. I "can" get the tests done its just difficult some times when it comes to dumb or stubborn doctors. A few weeks ago I saw a Nurse Practioner (or something like that) and asked for a thyroid panel. She ordered "Free T4" and "Total T3". Makes ZERO sense.

    Im tempted to start thyroid meds but I wanted to get a full picture of where my body is at after taking such a long break from all meds (6 months). Also, Im not sure if I want to try T3 only, T4 or a T3/T4 combo.

    I was addressing methylation but never got tested for heavy metals or homocysteine. Never noticed any benefit or side effects so many people reported regardless of how high I pushed my doses so I figured it was safe to say I wasnt high in heavy metals for whatever reason.. Still want to get tested though.
     
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  16. MAF14

    MAF14 Senior Member

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    I should have probably noted when I "added" T3 I was taking 75mcg so that may make a bit of a difference.

    How much coconut oil do you have daily?

    For over a year now I've noticed an ammonia like smell before flushing but also dont drink that much water so I figured it could be because of that. If you have "too much" ammonia built up are there certain side effects you notice? Or just the smell?

    If Broccoli makes you hypo I'm assuming you are taking multiple doses of thyroid meds through out the day?

    Unfortunately coffee serves me no benefit :(
     
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  17. Athene*

    Athene* Senior Member

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    I've met plenty of those :)
     
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  18. Gondwanaland

    Gondwanaland Senior Member

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    When I first started taking coconut oil I used it as a (paleo / GF) bread spread. Thenevery health site started promoting coconut oil for mouth pulling, moisturizer etc and I started pulling oil and using it on the dermatitis I had back then, plus using it to bake vegetables. Soon I became intolerant to it (I became salicylate intolerant). So a year after recoring from salicylate intolerance I gave another go for coconut oil (1 tsp in my morning coffee), but the mucosa inside my mouth peeled from it (I think this is B2 deficiency), then I stopped it again. Right now I am using it as a bread spread at breakfast and everything is fine. I would say I am using 1 tsp everyday at breakfast.

    I am not sure I can answer that... I am not sure the symptoms I always thought were from ammonia actually were from it... the symptoms were from metabolic acidosis, which can have ammonia involved since the body compensates the extreme alkalinity from ammonia with acidifying reactions.

    I was eating broccoli daily for 2 months straight and then one day I got very hypo. At that time I was taking my T4/T3 1x in the morning. Then I stopped broccoli altogether and added a dose of T3 only at 6 PM. Now I eat broccoli every other day.

    I must cycle it, sometimes it makes me feel great, but then all of a sudden it will make me feel awful.
     
  19. snowman

    snowman

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    @MAF14, the glycine dosage for Dr. Klenner's protodol was 1 heaping Tbsp in milk four times per day. The other details of his protocol and info on why each item are here http://www.townsendletter.com/Klenner/KlennerProtocol_forMS.pdf . I find it interesting that coxsackievirus can trigger MS, but that same virus is common in CFS/ME. There are some updated Klenner-like protocols on the web now that active forms of vitamins are available. It sounds like the glycine breaks down to several things, one of which is ammonia which can then convert to urea which I think is an antioxidant that is really low during MS attacks. But, for CFS/ME patients, some have problems with ammonia and might not easily get enough of it converted.

    Some ideas on how to lower rT3 here: http://www.stopthethyroidmadness.com/reverse-T3/
    including lowering biological stress, making sure there's enough selenium, using more T3 and less T4, making sure there is enough iron and adrenal hormones, etc.

    I'm guessing @Athene* that during the development of celiac disease prior to going gluten free, when the antibodies for celiac were high, that they cross-reacted with other tissues, attacking your thyroid and adrenals and possibly BBB. Then when gluten free for long enough to lower antibodies, the effects on other parts of the body didn't reverse but neither will antibodies necessarily be left high in your system.
     
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  20. snowman

    snowman

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    @MAF14 Do you mean you were prescribed 75 mcg of T3? How did you find a willing doctor to give you that much?
     

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