Healing ups and downs - PEM query
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Hello. I'm new here and I wanted to see if this stokes anyone's fire. I'm on a hypothyroidism healing journey. It's been going great for the most part. Suffered for years, was in various stages of denial, then finally starting addressing it, through diet and supps (been focusing on thyroid, cypro, low dose b vits, vit k, and avoiding pufa)
Recently I've had many gains, days where i've felt normal again for the first time in ages. I started taking thyroid and it has settled my longstanding POTS, which is huge because I had it for 5 years and honestly thought nothing would fix it. I had previously tried high dose thiamine as per some advice, and it always lead to me feeling like I was poisoning myself and seemed to create other deficiencies. So I'm over joyed that thyroid plus a very low dose thiamine is enough to heal the POTS. I've had days where my energy has felt so normal and restored, I have cried with relief, no jokes.
And yet. Recently I have also become more susceptible to post-exertional malaise (PEM). I'm in it right now, and all I did yesterday arvo was some housework. I got it last week when all I did was sit in the sun having lunch for 20 minutes. So I'm a bit surprised and it seems like my healing journey is going a bit up and down.
I think what I find tricky is conflicting advice. I have no doubt I have longstanding deficiencies in things like b vitamins, vitamin d and k, and that I would benefit from taking dhea. But I also read advice that says don't take too many supps, because you'll over-rev your system and 'crash'. But as against THAT, I read people saying you can't take a supp in isolation, it only works properly if you also take x, y and z. So I am a bit confused.
If anyone has any experience with PEM and wants to chime in, I'd be grateful. It's not fun, and it took me a good few years before I really understand what it was and could put a name to it. Cyproheptadine is pretty much the only thing that actually digs me out of the hole once I'm in it, but I don't want to rely on that long term.
I don't know if this post is too long, I'm brand new here. One final thing to say is, I am currently only on a very low dose of thyroid (half a grain), because about 6 weeks ago, I had a PEM episode and decided to stop all supps and 'reset' and start again. I now think I should have stayed on the thyroid to get some continuity.
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progress isn't always linear so hang in there! ideally, you'd be taking supplements only upon the manifestation of certain symptoms, and eating a nutritionally dense diet, but trust your own senses and drop supplements strategically. how much energy have you focused on your digestion?
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@samson thanks for that. I'm trying to remind myself that healing isn't linear, and being more susceptible to PEM lately doesn't magically undo all the progress or mean I'm going backwards. Maybe lowering stress hormones via the cypro has revealed an underlying deficiency that I'm yet to address. I have this theory that the reason I didn't have full blown PEM in the past is because I was running on stress, and now that I'm not, I'm sort of just facing what was there underneath. I don't know, I kind of hope that's it.
My digestion is good, I had horrible issues when I was younger but they all went away after an H. Pylori treatment and since then it's been smooth sailing. I do typically only have one bm a day, and I know some people are adamant that you need 2 or 3 to be considered healthy.
There have definitely been more good days than bad and progress that I can't ignore. I guess this latest PEM episode has just spooked me because it came on so easily. I honestly don't think I'm overdoing the supps, because I'm taking very low doses of most things.
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Update: I now don't think today's 'crash' was PEM, but rather a paradoxical reaction to the thiamine. Even at low doses (I've been taking about 50 mg hcl), I think I am very sensitive to it. After feeling so good recently and making such progress, it just made no sense to me that something like PEM would be getting that much worse.
I've been reading interesting stuff on the hormones matter website about people having the exact same symptoms I've had all day: a strong burning feeling through the body, and like the muscles are weak and on fire. I've also read one of the main contributors to that website (Dr Marrs) saying that it's entirely wrong to assume everyone needs high doses of supplements to get better, including thiamine, including if you are thiamine-deficient. I needed to hear this because it's easy to get seduced by the 'more is better' mindset.
I'm going to stop the thiamine entirely and see what happens. Hopefully I can get back on track.
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@jd_au said in Healing ups and downs - PEM query:
Update: I now don't think today's 'crash' was PEM, but rather a paradoxical reaction to the thiamine. Even at low doses (I've been taking about 50 mg hcl),
Hi,
With thiamine high dose you need some B2 to avoid side effects. A significant dose of thiamine will exhaust vitamin B2 (Riboflavin). It is as if there were then a lack in Riboflavin.
When taking B1 high dose there is communication between the brain and the body through the vagal nerve (and thus the microbiome).
Mostlylurking has seen side effects when taking high dose Thiamin (B1) without supplementing riboflavin (B2). Not necessarily every day. Marked temporary increase of riboflavin excretion was not observed by all subjects (period not above 8 days).
Riboflavin deficiency (B2) can have some of its effects by reducing the metabolism of other B vitamins, including folate and vitamin B-6.PS: I confirm there are up and down levels when the brain is trying to adapt the response for energy.
useful info (in French, translator needed, with link in English)
*) Thyroïde B1 B2 B3 – Interaction
Interaction entre les vitamines du groupe B et la thyroïde
https://mirzoune-ciboulette.forumactif.org/t2018-comment-booster-votre-energie#29549
Excerpt:
Metabolism of B2
Vitamin B2 (Riboflavine), in its forms of coenzyme, Riboflavine-5′-Phosphate (FMN) and Dinucleotide Adénine Flavine (FAD), is involved in many critical metabolic reactions, including the assimilation of amino acids, carbohydrates and lipid metabolism, and in the conversion of folic acid (B9) and pyridoxine (B6) in their forms in coenzyme.
The enzymes for the conversion of the FAD and the FMN will be regulated by the Thyroid T3 and T4.
Expressed differently:Thyroid hormone (thyroxine) regulates the enzymatic conversion of riboflavin into its active coenzyme forms.
B2 is necessary for the regulation of thyroid enzymes: B2 helps to organify iodine (i.e. the incorporation of iodine for the production of thyroid hormones). (5-9)
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@LucH thank you for that. I have also been taking low dose b- complex, but it prob doesn't have enough b2. I find supplementing the b vitamins to be so complex, with so many pitfalls. You need x to make y work, but if you take too much x, it will deplete z etc etc. It's an endless minefield.
I'm going to just work on thyroid and diet, and try and get enough b vitamins from milk and liver. Even if I don't fix all my issues, I should still make real progress.
