Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Thyroid Function...Labs May Lie

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

  1. MAF14

    MAF14 Senior Member

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    Thanks for the glycine clarification and adding the part about ammonia. I believe I do have an ammonia issue and just ordered some L Ornithine Alpha Ketoglutarate. Per a post from @ahmo, I saw some FMN was beneficial with her ammonia issues so I opened a bottle I had laying around. I seem to be a little more clear headed but very well could be placebo... To my dismay I'm also considering going very low protein to see if that helps.

    I'm familiar with the STTM protocols, I've been taking iron, selenium, and iodine for a few months now which may have something to do with it although the same protocol year(s) ago did not have the same effect. Also, I've scored pretty decently on a recent diurnal cortsiol kit BUT also start to get sleepy around 3pm every day.
     
  2. MAF14

    MAF14 Senior Member

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    I was not prescribed, I was taking it myself. I've never had side effects from thyroid meds. I could take 150mcg in a day without noticing anything.

    Although I should note my doctor was very understanding and prescribed me 25mcg T3 and some T4 knowing that I was taking 50mcg myself in addition to that.
     
  3. ahmo

    ahmo Senior Member

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    How/where did you get it?
     
  4. MAF14

    MAF14 Senior Member

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    Good ole Mexico... The product I was taking "Cynomel" I believe has been discountinued but I just checked the supplier site and they have a 75mcg Cytomel listed. It's probably a generic though.

    Would you like me to PM you the site?
     
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  5. Gondwanaland

    Gondwanaland Senior Member

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    Hypoglycemia?
     
  6. MAF14

    MAF14 Senior Member

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    Maybe? I usually just have coffee/coconut oil and a bunch of pills for breakfast although even though I eat do eat lunch most days with a relatively decent amount of carbs.

    EDIT: I should have noted that my lunch is almost always, high protein/high fat with a small amount of carbs so I figured I would avoid insulin spikes or drops.

    I dont have the easiest time getting up in the morning but I can, I feel fine early morning, but then I feel "kinda" tired through out the day, but then feel "sleepy" around 2-4pm (usually closest to 3pm).

    I always assummed I was running low on cortisol and/or thyroid hormones...
     
    Last edited: Mar 17, 2016
  7. picante

    picante Senior Member

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    Cynomel has been discontinued, and the thyroid forums are all full of people asking what the best replacement is for those who can't afford Cytomel. Two of the Mexican drugstores continue to show a photo of Cynomel, but they send you something else. I've received Tiromel from Medicina Mexico, but I have yet to find out the ingredients (the package insert is in Turkish).

    I couldn't seem to ever get the dosing right, so between that and the supply problems, I decided to try a dessicated bovine thyroid. (Pig thyroid never did anything whatsoever for me.) I like it better than anything I've tried in 10 years, but not sure yet whether I'm going to have to add back in a little bit of straight T3.
     
  8. Gondwanaland

    Gondwanaland Senior Member

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    In that case you could try eating more often, have little snacks, perhaps this fixes it.
     
  9. Athene*

    Athene* Senior Member

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    Thanks again @snowman! I don't know, but I never did have high antibodies for coeliac (they were 'very low' according to doc, but I guess an antibody is an antibody...). They weren't present when I became ill, or anytime during the next 15yrs. This coeliac result/diagnosis was found about 15 years after first becoming ill (i.e. with thyroid and ovary results swinging from high to low: FSH, TSH, oestrogen, Free t4). I was hoping at the time it was autoimmune (just to get a firm diagnosis).

    So, when this fluctuating ovary and thyroid function happened, every antibody under the sun was checked for, because I was keen to become pregnant, and I was keen to get answers. No antibodies were found, including coeliac, and many many others including (thankfully) neural antibodies. So then they claimed it wasn't autoimmune, and washed their hands off me, but a young endocrinologist did suggested a possible hypothalamic issue. He left the country and never went any further with me and I forgot all about that.

    Then later, with more aches and pains and fatigue etc, and no benefit whatsoever from any form of thyroid treatment, a different endocrinologist kindly suggested b12 injections might help; and even though he said strictly speaking there shouldn't be a need for them, he wrote 'pernicious anaemia' on a letter to the GP (my doctor, general practitioner). His diagnosis was based on low serum b12, and symptoms, but no evidence on testing of parietal cell etc antibodies, or other antibodies. Maybe, like you say, they weren't high enough. Who knows?

    As luck would have it, the letter to the GP got lost. I only found it on my file with his other notes years later.

    After it went missing, things went rapidly downhill.

    Eventually, no endocrinologist would get involved, saying 'not my area' etc. and just told me to take the Levothyroxine and go away. They said my b12 serum was 'very high' (which mystified me, given the earlier low b12 finding, by that endocrinologist as well as a separate b12 test by a gynaecologist), and said I didn't need injections at all, and would certainly not prescribe them.

    Thankfully, my GP is fairly relaxed and open, and agreed to test MMA, (and Active B12 tested privately), showing it was low at cellular level, so she gave me scripts for b12, which did help with many symptoms, but not all. So I added some sublingual b12 plus small amount of methylfolate, after reading it could help. It helped more than b12 only, but again, not enough.

    So on to 'Phoenix Rising' and now I'm at this point where for the first time in my life, since the last few weeks i.e. since I began the high-dose methylcobalamin and high-dose methylfolate, I'm tapering off the hydrocortisone (was on it for about 18months, at 15-20mg daily for the majority of that time). I'm sticking to a small dose of NDT with my t3-only dose and things have improved greatly from t3-only. It seems I really needed that bit of t4. Thanks for suggesting the small dose of t4, by the way (I seem to remember it was you). I'm absolutely thrilled. It helped to get rid of some awful IBS symptoms that needed tons of folate to get rid of (now I need less folate).

    I don't expect to get my thyroid function back (I expect the tissue has atrophied from so many years of Levothyroxine? I'm not sure. I never had a thyroid scan, only an adrenal one, but I don't mind taking the thyroid meds as long as my health continues to be this good).

    I might need to take some iron though (doc is re-testing) - my transferrin saturation % was slightly low last time and my ferritin, which is what led me to post on that earlier thread. Could this indicate a need for b2, do you think, or just the dreaded iron supplements (have had them before)? Am I right in saying b2 can raise iron (or storage iron?)
     
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  10. ahmo

    ahmo Senior Member

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    Thanks. Unfortunately I can't use this form. It's likely the same as the Cytomel in this country, which includes corn starch, and causes me problems due to gluten cross-reactivity. I now use T3 from compounding chemist. Your post gave me a few moments of hope for a cheaper alternative. Fortunately, it's one of only 2 pharmaceuticals I use.
     
  11. MAF14

    MAF14 Senior Member

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    Bovine thyroid... Interesting. Mind PM'ing me your source?

    I dont know if you're familiar with the bodybuilding boards but a few sites have "sponsors" who sell bodybuilding drugs as well as some who additionally carry various T3's.
     
  12. MAF14

    MAF14 Senior Member

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    Yes, I probably should I just fear the weight gain/inability to lose it no matter how little I eat.
     
  13. MAF14

    MAF14 Senior Member

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    Have you ever used "liquid T3"? It comes from "research companies" (again) that bodybuilders typically use...

    The only issue I see is difficulty in exact dosing and consistency across batches.
     
  14. ahmo

    ahmo Senior Member

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    I'd never heard of this. I think I'll stick w/ what I've got. thanks.
     
  15. snowman

    snowman

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    @Athene* , according to the B2 I love you thread where Dog Person wrote about B2 and iron, it looks like B2(or FMN) can raise serum levels of ferritin or other serum iron measurements by drawing them out of liver storage or something like that. I am currently getting very hypothyroid with more trouble thinking.

    I think Greg's website page on hypothyroidism and B12 says that B2 and thyroid hormones are needed to convert B12 from inactive to active, so serum can be high full of inactive yet MMA and Hcy show that there's not enough active adenosylB12 and methylB12. I can't remember if it was just thyroid or also B2 that helped the conversion, but they go together as well because the thyroid is used to convert B2 to FMN and FAD with a lot of actions in the body besides methylation and B12 things. I'm getting too mixed up and hope enough of what I put is correct to be of help.

    Has anyone tried pretty large doses of things that help convert T4 to T3 (such as selenium and boron), then going with cheap levothyroxine? If it works, maybe it could be a cheaper alternative for @ahmo and others.
     
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  16. Gondwanaland

    Gondwanaland Senior Member

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    Boron did wonders for me - for 2 months, and then I could never take it again not even 100mcg due to parathyroid pain.
    I never felt so clear headed as in those 2 months...
     
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  17. picante

    picante Senior Member

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    Oh dear, I wish it would clear my head. I started it recently when Freddd said my low-back arthritis might be due to boron deficiency. I think it's helping with that.
     
  18. snowman

    snowman

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    @Gondwanaland , I wonder if you'd get the same good effect from slices of fresh ginger but without the parathyroid pain? Boron and ginger have some very similar anti-inflammatory actions, but as far as I know ginger doesn't act on calcium like boron.
     
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  19. Athene*

    Athene* Senior Member

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    Thanks so much @snowman. I'll look into it again if I run into problems with raising the iron. It'll be re-tested soon. I do hope you resolve the hypo situation soon - it certainly can be a challenge at times.
     
  20. Gondwanaland

    Gondwanaland Senior Member

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    Interesting. There has been a thread a couple of months ago where someone was taking Boron and had B2 deficiency because of Boron. I wonder if the other ways around is also true, that supplementing B2 makes one Boron deficient.

    My husband gets instant migraine from the tiniest amout of Boron, which is also instantly relieved by B2.
    This week I have been increasing the ingestion of high Boron foods in hopes it will help to balance my hormones.

    Thank you so much for the hint, I haven't had much ginger since my oxalate intolerance one year ago. I will give it a new try.
     
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