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Hi everyone,
A friend just told me today about D-Ribose, apparently a supplement that's supposed to help with fatigue. I'm almost at my wit's end with the decade + I've been dealing with my fatigue - willing to try anything at this point. But I'd love to know if anyone here has tried it. I did a quick search, and it looks like Bob mentioned that he'd taken it, but other than that there's no mention of it. Has anyone heard of it/tried it? Would love to know any thoughts you have.
Thanks!
Elizabeth
D-Ribose
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Unfortunately, it just goes away very gradually as the gut heals off the foods one is sensitive to. It seems like I was much improved 6 months out. That slowness was VERY discouraging to me in the beginning when everything else was improving, for me at least, very rapidly. To my mind, it's one of the worst symptoms, along with the body pains and migraines.
I needed to get caught up on so many things, after all that fatigue going on for years. Down deep I had a fear that I'd be stuck with it forever, but I got so busy figuring out shopping and menus, and getting help here that that took my mind off of it. One day around 6 months or so, it just dawned upon me that I wasn't so tired anymore.
I'm not sure about the supplement. Perhaps someone has experience with it.
Oh, and don't forget to check into your vitamin B levels, particularly B-12/Folate. I've started to taking a new supplement put out by Jarrow Formulas
which one can find at Whole Foods or other good healthfood stores. This formula is called "B-Right" "Low Odor B-Complex. I would still follow up on the blood levels, even if taking that, to make sure you are absorbing the B-vits.
The reason for this is because low vit B levels can cause some serious problems and some can be permanent.
Are you losing any weight?
Yours, Luce
I needed to get caught up on so many things, after all that fatigue going on for years. Down deep I had a fear that I'd be stuck with it forever, but I got so busy figuring out shopping and menus, and getting help here that that took my mind off of it. One day around 6 months or so, it just dawned upon me that I wasn't so tired anymore.
I'm not sure about the supplement. Perhaps someone has experience with it.
Oh, and don't forget to check into your vitamin B levels, particularly B-12/Folate. I've started to taking a new supplement put out by Jarrow Formulas
which one can find at Whole Foods or other good healthfood stores. This formula is called "B-Right" "Low Odor B-Complex. I would still follow up on the blood levels, even if taking that, to make sure you are absorbing the B-vits.
The reason for this is because low vit B levels can cause some serious problems and some can be permanent.
Are you losing any weight?
Yours, Luce
Thanks, Luce. I have had my blood levels checked, and my doctor wanted me to take a vit. d supplement and B complex supplement, which I have been doing. I'm slowly introducing other supplements/vitamins to see whether my body can handle them. But in general my blood levels are good. And, no, not losing any weight any more - finally stabilized about a year ago. I just want to stop feeling tired, a problem that has been plaguing me for more than a decade - far longer than I've had MC! So, any other thoughts on this, particularly the ribose, would be great.
Thanks!
Elizabeth
Thanks!
Elizabeth
Elizabeth,
I'm apologize if you've already covered this, but have you had your thyroid function checked lately? Constant fatigue is one of the symptoms of hypothyroidism, (or under-treated hypothyroidism). Of course, it's also a symptom of various other conditions, but people with MC, (according to our own survey), are 8 times as likely to have thyroid problems, as the general population. I'm speaking from experience on this one, since I also have hypothyroidism.
My TSH reading was near mid-range, but my free T4 was slightly below range. My doc tried to tell me that I didn't need any treatment, since my TSH looked fine, but since my free T4 was below range, he agreed to let me try a minimum dose of thyroid hormone supplement, to see if it would help. (I requested the free T4 test, otherwise we wouldn't have had the data).
Most GPs seem to think that the sun rises and sets over TSH values, as far as thyroid function is concerned, but it's not the ultimate gauge, for everyone. Since then, we've doubled the dose twice, and switched from the modern synthetic hormone supplement, to Armour. Armour is an old, (considered obsolete by most doctors), natural thyroid supplement, made from dessicated pig thyroid, that also contains T3, (most synthetic thyroid hormone supplement contains only T4). Our bodies have to convert T4 to T3, in order to get some benefit from it, and some people's bodies aren't able to do that as well as they should. My TSH is still in mid-range, interestingly enough, but my free T4 is up in the normal range, now, and I have a lot more energy, and fewer hypothyroid symptoms. Armour seems to do wonders for certain people who are not responsive to the synthetic hormone supplements.
Just a FYI,
Tex
I'm apologize if you've already covered this, but have you had your thyroid function checked lately? Constant fatigue is one of the symptoms of hypothyroidism, (or under-treated hypothyroidism). Of course, it's also a symptom of various other conditions, but people with MC, (according to our own survey), are 8 times as likely to have thyroid problems, as the general population. I'm speaking from experience on this one, since I also have hypothyroidism.
My TSH reading was near mid-range, but my free T4 was slightly below range. My doc tried to tell me that I didn't need any treatment, since my TSH looked fine, but since my free T4 was below range, he agreed to let me try a minimum dose of thyroid hormone supplement, to see if it would help. (I requested the free T4 test, otherwise we wouldn't have had the data).
Most GPs seem to think that the sun rises and sets over TSH values, as far as thyroid function is concerned, but it's not the ultimate gauge, for everyone. Since then, we've doubled the dose twice, and switched from the modern synthetic hormone supplement, to Armour. Armour is an old, (considered obsolete by most doctors), natural thyroid supplement, made from dessicated pig thyroid, that also contains T3, (most synthetic thyroid hormone supplement contains only T4). Our bodies have to convert T4 to T3, in order to get some benefit from it, and some people's bodies aren't able to do that as well as they should. My TSH is still in mid-range, interestingly enough, but my free T4 is up in the normal range, now, and I have a lot more energy, and fewer hypothyroid symptoms. Armour seems to do wonders for certain people who are not responsive to the synthetic hormone supplements.
Just a FYI,
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Beth,
I have to admit being totally unfamiliar with this so looked it up on the internet. It sure shows that it appears to be good for a lot of different things and there have been a few gov't sponsored studies. My only concern would be that one of the side effects is loose stools.
I have been feeling great but still somewhat tired also. Since I have been better for about 3 months now I wouldn't want to go back to the loose stools and I do seem to have that reaction to a lot of different meds and supplements.
Just something to think about.
Jan
I have to admit being totally unfamiliar with this so looked it up on the internet. It sure shows that it appears to be good for a lot of different things and there have been a few gov't sponsored studies. My only concern would be that one of the side effects is loose stools.
I have been feeling great but still somewhat tired also. Since I have been better for about 3 months now I wouldn't want to go back to the loose stools and I do seem to have that reaction to a lot of different meds and supplements.
Just something to think about.
Jan
While you are proclaiming peace with your lips, be careful to have it even more fully in your heart. - Saint Francis of Assisi
Hi there,
I got a big goiter right after my (then) untreated with diet M.C. The series of tests kept coming back weird, so cancer never could be ruled out. I had a second opinion from an endochrinologist (one who incidently has had the same surgery and other M.C. related symptoms, incidentally) who said I should just go ahead and get that thing out, so I did.
Since that time, I've been stablized successfully on Armour, but because each of the T lab values Tex mentions has to be titrated individually, I take an additional dose of Levoxyl, and that combination keeps me where I need to be.
It seems like several of our members' physicians, a while back, were able to wean them slowly down on their thyroid hormones (they still had the organ) after they started on the diet. Tex, do you remember that? Anyway, I will always wonder whether if I'd had the M.C. diagnosed a few years earlier and gone on the diet then, whether my thyroid might not have gotten that goiter.
I have even read someplace that there had been instances of a goiter actually reducing when the diet was instituted -- pretty difficult to believe, but after my experience, I'm a bit more open to the idea. I think mine was pretty shot by that time, but then, so was the rest of me by then!!!
I had always had my thyroids checked over the years, and everything would always look pretty normal, even though I had symptoms similar to hypo, although I may have experienced some hyper right before that -- not sure.
Perhaps if I hadn't had so many long term family illnesses to deal with right before the goiter, I might have not dropped the ball on those periodic blood tests and begun the hormones in time to prevent the worst of those problems.
My doc told me that most people feel better if their TSH's are around 1, but then I'm not sure whether he would recommend that to someone who still had their thyroid glands.
Unfortunately, I have low parathyroid as a follow-up to auto-transplant following the surgery. Think I'm just lucky the thing still works -- frequently, they will not function after they are removed and put back at all.
I also remember reading somewhere that the antibodies to one of our common allergens among this group are also reactive to parathyroid tissue -- don't want to try to guess what that food was, but I have a hunch what it was, but it wasn't gluten, I don't think.
If my parathyroid goes out, I will be totally dependent upon calcium to live, and I gag at that stuff I already take! The parathyroid hormone being low makes my Vitamin D levels a little more complicated for me to understand. I have a hard time figuring out the physiology behind my numers. That being said, the comments about the parathyroid probably won't be relevant to your situation, so right now, as Tex indicated, best to get that treated.
By the way, we did have a visiting Physical Therapist here one day for my mother who looked exhausted. She's had had the same surgery as I had had, but was just on synthetic hormones. We talked, and I told her that my Armour and Levoxyl combo seemed to be doing it's job, so she was going to check into it to see if it made a difference. That was her last visit, so I never really had a chance to hear if things got better for her.
I didn't have an M.C. diagnosis until a few months after that, and on the diet a year later, so didn't get to tell her what happened after that visit. However, the fatigue the last 12 months after that before I got on the diet eventually became totally debilitating. I guess I could just tell the difference between having a totally dead thyroid and being put on the two forms of thyroid after the surgery. My levels went to very good within a short time, but my fatigue got horrible in spite of it, so sometimes these things just occur concurrently.
As you probably already are well aware, we are just predisposed to have more than one autoimmune condition, and it seems that all of them can make one physically exhausted. I'm not having that abnormal fatigue now, thankfully -- probably about right for someone my age and condition. I just wish I could manage to work in more formal exercise to recondition everything.
Let us know what you've heard about that supplement, ok.
Yours, Luce
I got a big goiter right after my (then) untreated with diet M.C. The series of tests kept coming back weird, so cancer never could be ruled out. I had a second opinion from an endochrinologist (one who incidently has had the same surgery and other M.C. related symptoms, incidentally) who said I should just go ahead and get that thing out, so I did.
Since that time, I've been stablized successfully on Armour, but because each of the T lab values Tex mentions has to be titrated individually, I take an additional dose of Levoxyl, and that combination keeps me where I need to be.
It seems like several of our members' physicians, a while back, were able to wean them slowly down on their thyroid hormones (they still had the organ) after they started on the diet. Tex, do you remember that? Anyway, I will always wonder whether if I'd had the M.C. diagnosed a few years earlier and gone on the diet then, whether my thyroid might not have gotten that goiter.
I have even read someplace that there had been instances of a goiter actually reducing when the diet was instituted -- pretty difficult to believe, but after my experience, I'm a bit more open to the idea. I think mine was pretty shot by that time, but then, so was the rest of me by then!!!
I had always had my thyroids checked over the years, and everything would always look pretty normal, even though I had symptoms similar to hypo, although I may have experienced some hyper right before that -- not sure.
Perhaps if I hadn't had so many long term family illnesses to deal with right before the goiter, I might have not dropped the ball on those periodic blood tests and begun the hormones in time to prevent the worst of those problems.
My doc told me that most people feel better if their TSH's are around 1, but then I'm not sure whether he would recommend that to someone who still had their thyroid glands.
Unfortunately, I have low parathyroid as a follow-up to auto-transplant following the surgery. Think I'm just lucky the thing still works -- frequently, they will not function after they are removed and put back at all.
I also remember reading somewhere that the antibodies to one of our common allergens among this group are also reactive to parathyroid tissue -- don't want to try to guess what that food was, but I have a hunch what it was, but it wasn't gluten, I don't think.
If my parathyroid goes out, I will be totally dependent upon calcium to live, and I gag at that stuff I already take! The parathyroid hormone being low makes my Vitamin D levels a little more complicated for me to understand. I have a hard time figuring out the physiology behind my numers. That being said, the comments about the parathyroid probably won't be relevant to your situation, so right now, as Tex indicated, best to get that treated.
By the way, we did have a visiting Physical Therapist here one day for my mother who looked exhausted. She's had had the same surgery as I had had, but was just on synthetic hormones. We talked, and I told her that my Armour and Levoxyl combo seemed to be doing it's job, so she was going to check into it to see if it made a difference. That was her last visit, so I never really had a chance to hear if things got better for her.
I didn't have an M.C. diagnosis until a few months after that, and on the diet a year later, so didn't get to tell her what happened after that visit. However, the fatigue the last 12 months after that before I got on the diet eventually became totally debilitating. I guess I could just tell the difference between having a totally dead thyroid and being put on the two forms of thyroid after the surgery. My levels went to very good within a short time, but my fatigue got horrible in spite of it, so sometimes these things just occur concurrently.
As you probably already are well aware, we are just predisposed to have more than one autoimmune condition, and it seems that all of them can make one physically exhausted. I'm not having that abnormal fatigue now, thankfully -- probably about right for someone my age and condition. I just wish I could manage to work in more formal exercise to recondition everything.
Let us know what you've heard about that supplement, ok.
Yours, Luce
For some reason or other, I don't recall that discussion, but my memory sometimes gets lazy on me, so that certainly doesn't mean that the discussion didn't occur. Considering the way that MC affects so many organs in the body, that certainly sounds plausible.Luce wrote:It seems like several of our members' physicians, a while back, were able to wean them slowly down on their thyroid hormones (they still had the organ) after they started on the diet. Tex, do you remember that?
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.