In So Much Pain And Scared, Getting Worse Rapidly

[Blossom]

Sorry to ask because I know you've probably mentioned it already but which thyroid are you using?

 

[energyandstruct]

I recovered from clinically diagnosed CFS attributed to EBV. I do think undiagnosed celiac disease was involved too. I'm just letting you know because I'd hate for you to lose hope. I know it's hard not to when you're in the thick of suffering.

It is great to hear, thanks. I appreciate it.

 

[energyandstruct]

Sorry to ask because I know you've probably mentioned it already but which thyroid are you using?

so far, 1/8th cynoplus in evening, and two small cynomel doses during the day. I think i need more now but idk how much i can increase. Might get 1mcg t3 pills compounded so I can try taking ultra small doses but more frequently (maybe every hour?)

 

[Blossom]

How long have you been taking cynoplus?

 

[energyandstruct]

How long have you been taking cynoplus?

two-three weeks. the effect was probably greatest in week two or so

 

[Blossom]

As far as I've read here on the forum cynoplus can be increased after two weeks although some have mentioned waiting longer.

I have taken 1/2 of a crushed cynomel and dissolved it in 10 ml 50/50 vodka/distilled H20. I would draw it up in a 10 ml syringe. That's just slightly over 1 mcg/ml. One could dose less than a ml though. I'm not a scientist but it worked for me. I kept the syringe in the refrigerator and used it within a week. It might be easier to get it compounded but I didn't have that option so I had figure out a way to do it DIY.

 

[energyandstruct]

i'm also wondering if there are any possible nutrient deficiencies preventing the thyroid from working or fully absorbing. But that wouldn't make that much sense because it was working before, albeit rockily; and my diet wasn't different a week ago than now

 

[energyandstruct]

the only thing is I do not really eat liver (i have hard time forcing myself to eat it). I have smoked oysters which I eat some tho and eat eggs

 

[energyandstruct]

I am having difficulties with thyroid despite initial beneficial results from it. I am starting to wonder about kenneth blanchard's protocol with ultra low dose t3 on top of higher doses of t4,. Is anyone familiar with his stuff?

I go easily from feeling undertreated by the thyroid to overstimulated in an unpleasant way. My blood pressure is normally normal but it's been higher since thyroid treatment, and I wonder about the relationship

I don't want to give up on thyroid as I had a definite beneficial effect from it but finding the right dose and getting that relief without side effects is maddening.

 

[energyandstruct]

the thyroid is causing a feeling of dysphoric overstimulation. like feeling agitated and uncomfortable and not right in my skin

 

[energyandstruct]

hmm its tricky

 

[energyandstruct]

I'm having this dilemma where thyroid has started to cause side effects, but I know at one point it felt like it was so intuitively right, like it was starting to correct what was wrong.

Recently I've been oscillating between feeling undertreated and feeling what seem like hyperthyroid symptoms--feeling too dry and hot, feeling tense and dysphoric, increased blood pressure

Also i'm 23 and my beard hairs started to turn white, this has literally never happened to me, it's never happened to anyone in my family, and I feel like it's a sign of some problem. I don't even care about it cosmetically but given how out on a limb I feel with doing intense treatments that my doctor is barely supervising, it's sorta worrying me.

I read that hyperthyroidism can cause white hair.

Anyway, I do think that there's robust evidence that CFS is hypometabolism, but maybe it's not solely caused by thyroid issues?

Again, anyone on this forum have success with Kenneth Blanchard's stuff, with really low T3 plus higher t4 doses?

I don't quite want to give up on thyroid treatment yet but damn

 

[energyandstruct]

Oh and also, to some extent the thyroid has suppressed appetite which is already small. almost feels like low dose naltrexone or a stimulant.

Sometimes I take what feels like a proper dose and I feel warm and good and relaxed and less pain, etc... and sometimes it increases my appetite and then sometimes when I take it I feel like this.

I am not really getting much info from danny on this, or ray. I mean they know a lot so I'm not complaining, but they still are sort of "by the book" in terms of talking about the same few nutrient or hormone deficiencies causing everything. I'm eating pretty decently when I can eat (like I said it sometimes suppressed appetite), I never take the thyroid without food or juice.

I take other vitamins

 

[energyandstruct]

The thyroid thing is now really tricky and maddening to me. A few nights in a row I have had a bad/weird reaction to a small dose of cynoplus that normally makes me feel good. hard to describe it except dysphoria but not exactly pain, but very intense dysphoria, like kappa opioid ***t (salvia and iboga are like that) and sort of catatonic. Very tired, almost paralyzed.
One of the nights I had this I felt like I was hyperthyroid. I felt dry and hot and flu-ish, but I didn't have a fever. My heart rate has also stayed fairly low during these incidents.

TOday I had this at first with T4, and was confused bc i felt awful and headachey but not hungry , then I craved juice and I chugged juice and this helped a lot. Now I feel amost undertreated.
T3 seems to be easier on me in a way but if I dose it at 3 mcg it causes some hypomania and then depression when it wears off. Sometimes even a headache when it wears off.

I didn't talk about it much in this thread, but a couple weeks ago I felt like the thyroid was working great, I was pretty optimistic. I think at some point you have to trust your intuition and the fact that I responded well at one point (not just stimulation, but stopping muscle pain, raising my aerobic threshold, etc) makes me keep banging my head against the wall trying to make it work still, even though my responses have changed.
Like at first, I totally had better responses from cynoplus than cynomel. now I have problematic responses from both. It seems like the t4 is possibly hard on me, maybe due to liver problems, @tara mentioned tudca which I have now and will try, maybe will help with conversion


but I also get interesting, sort of hypomanic effects from t3 at a certain dose that seem to also have depression upon withdrawal.

At this point my responses to things vary so much, although there are commonalities, that it's hard to even log all the inconsistencies and they don't seem to match up to any theory per se. WEll i'm tired enough that I don't really think systematically and haven't had the energy day-to-day to log stuff really consistently, so this doesn't even work so much as an experiment. I really wish I could hire a friend to just take detailed notes for me lol or something like that. Voice to text helps some but inconsistently.

Maybe it's just a consequence of being so ill for so long that refeeding is tricky but idk.

 

[tara]

I felt dry and hot and flu-ish, but I didn't ha

ve a fever.

Are you drinking to thirst?

I didn't talk about it much in this thread, but a couple weeks ago I felt like the thyroid was working great, I was pretty optimistic. I think at some point you have to trust your intuition and the fact that I responded well at one point (not just stimulation, but stopping muscle pain, raising my aerobic threshold, etc) makes me keep banging my head against the wall trying to make it work still, even though my responses have changed.

As you know, I'm no expert and you are the one with more knowledge of your own personal responses.
But just thinking about the fact that T4 has a long half-life, and can take more than 2 weeks at a steady dose to come up to steady blood levels. DO you think you could have taken enough cynoplus to feel good initially, and that meant overshooting by the time it came into full effect?
Once you've taken more than your body wants, I think it may make some adaptations of its own to compensate, and that might get trickier.

@tara mentioned tudca which I have now and will try, maybe will help with conversion

I don't think I've mentioned TUDCA? Maybe someone else? It's not something I know anything much about.

Maybe it's just a consequence of being so ill for so long that refeeding is tricky but idk.

If what you are eating is not helping you have more energy, maybe it's not on the right track for you yet?

 

[energyandstruct]

Are you drinking to thirst?

As you know, I'm no expert and you are the one with more knowledge of your own personal responses.
But just thinking about the fact that T4 has a long half-life, and can take more than 2 weeks at a steady dose to come up to steady blood levels. DO you think you could have taken enough cynoplus to feel good initially, and that meant overshooting by the time it came into full effect?
Once you've taken more than your body wants, I think it may make some adaptations of its own to compensate, and that might get trickier.


I don't think I've mentioned TUDCA? Maybe someone else? It's not something I know anything much about.


If what you are eating is not helping you have more energy, maybe it's not on the right track for you yet?

what you said there, that I bolded, makes sense. But now I don't feel like I can stop cynoplus without worsening my pain and fatigue, and I was already on a very low dose. so it's tricky

 

[energyandstruct]

i feel like giving up honestly, i feel close to suicide. people weren't meant to live like this

 

[Amazoniac]

Ok, I went through all pages. At this point you must be fed up of poetry, so I feel that it's better to skip to practical things:

You've mentioned that the effects from magnesium weren't impressive. Which forms did you try? Multiple doses totaling 1 g/day aren't unreasonable for recovery, especially due to the use of vit D supplements.

Have you ever tried vitamin C (1 g spread throughout the day)? Selenium (60 mcg)? Zinc (10 mg)? Manganese (5 mg)? Molybdenum (<50 mcg)? Some of these aren't sustainable in supplemental form, but it's still useful to try them just to grasp if they aren't missing.

You also mentioned the garden. What about cooked greens with your potatoes and cheese? It should be fine to consume broccoli and related foods once in a while, especially given that you now have thyroid hormones at reach.

I would discontinue the fat-soluble vitamins supplements for a while, they can be tricky (in my experience in this order starting from least: K, E, A-D.. that's a tie).

I have the impression that raw carrot ribbons don't provide enough vitamin A if your needs are very high. Have you tried to include cooked foods that are high in b-carotenes? Other than the greens (which usually have the benefit of providing good amounts of K), some slices of cooked carrots, sweet potatoes, pumpkin, butternut squash, red bell pepper, and so on. Cantaloupes, mangoes, papayas and other imaginary fruits can also be great.

Imbalances in vitamins A, E, and C can impair A's metabolism. It's good to have E and C, but also B12, in supplemental form to have more control over the situation.

Carrot-apple juice is also a tasty alternative, has you tried it? burtan is font of it!

If you're already low on vit D, it can make it worse. Your headaches from sun exposure are probably a clue that there are other deficiencies involved, usually vitamins A, B or C.

And I have to comment that it's unfortunate that sunraiser was ignored.

 

[sweetpeat]

Do you have any thyroid lab levels you could share? What's your waking temperature?
Sorry if you've posted this somewhere already, I may have missed it

 

[energyandstruct]

Going slow is wise! There's definitely a natural build up for sun tolerance through spring towards summer, but also...



You need some kind of vitamin A status to tolerate sun. If it doesn't feel good on your skin then it's not doing good.

I had long periods this year after really overdoing lamb liver in which the sun felt bad. From trial and error I really depleted my zinc levels which lead to a functional vitamin A deficiency. A single dose of retinol palmitate made me enjoy sun again for a day, but it has only really started to resolve since having some oysters each week. I can't eat large amounts of beef without losing appetite for it at the moment for some reason. I should also add that I have a really varied and non restrictive diet - it's not just eating oysters but having those in conjunction with magnesium and selenium rich foods that I crave like mackerel and greens and rye bread etc etc.

Vitamin A is our natural sun protectant in the skin, and it's so important to remember that long term zinc deficiency will result in vitamin A deficiency (due to absence of sufficient retinol binding protein), despite a robust vitamin A intake. It's never just one factor so I hope my post doesn't imply that - this is only my context.

Just like everything else, the sun is not inherently good unless certain factors are in place to tolerate it. It has nothing to do with PUFA - I eat probably more PUFA than anyone on this forum and I'm able to tolerate the sun fine and have done in the past, too.

Yes I wonder if it's my zinc or vitamin A status, or low cholesterol? Just saying that last thing because my poor response tho thyroid recently could also be explained by that and I know one needs cholesterol to make vitamin D, which might be protective