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Posted

After my visit to the Mayo Clinic where the only useful info I got was some leg exercises, I changed my life up a little. Well, when you are stuck at home, I guess it wasn't a major change-up!

I began riding on my recumbent bike, a few minutes at a time, about 5 times a day.

So, I eliminated 98% sugar, not just 90%. I did this because the endo seems to think my low blood sugars are caused by large swings in my glucose levels, thus making me produce too much insulin. At home, I don't get real high glucose levels, so I feel I still just put out too much insulin no matter what my glucose goes up to. BUT, okay, at least doing this I could put to rest their theory or prove it is true. I've been eating more protein in the form of whey protein with any carbs, and of course, less carbs. I was not a big carb person to begin with, but made it even lower. I even began flax seed for the omega 3s and fiber, and their blood sugar stabilizing properties.

I began to feel good after a few weeks. I mean REALLY good. I quit being so heat intolerant and could be upright a little bit more, nothing drastic. I even felt more sociable, and made it to a meal my son fixed so we could meet his future in-laws, and I thoroughly enjoyed it. I began sleeping really well. I told my husband sugar must have really had a serious effect on me! I was really enjoying feeling so much better.

Until last week. I began a menstrual period, got a fever of 101F, and felt flu-ish all in the same afternoon. I have been in menopause for 2 1/2 years, with no periods and my FSH being way up into the 80s and 90s for those last years. And, I haven't had a fever in around 20 years!

I ended up going to my gyn, where she did an exam and confirmed it seemed like a full-blown period and not just spotting. She then had me do labwork and also an ultrasound. Both she and I were thinking the same thing---it was the flax seed!!! I still may have to have a d & c to check the uterine lining to make sure nothing regarding the big C going on.

Flax seed has estrogen-like properties. For two weeks before the period showed up, my breasts got tender. A week before my period, I had a bad case of abdominal bloating. I did not put two and two together, because, well, I am in menopause!

So, I have learned a couple of things:

1. Apparently estrogen makes me feel great!! I felt great emotionally and was physically pushing more, even though I still had POTS. But, I had no, I mean NO flushing episodes, so all that "vasodilaty" feelings were GONE!! It is like the estrogen "tightened" everything up. I had NO hand swelling like I've had for a couple of years.

2. Apparently I must still make progesterone if I had a period. That must be what made my have abdominal bloating the week before. I know progesterone is supposed to increase the aldosterone. Well, it must have, and I must not handle a normal aldosterone very well because I bloat so bad in the abdominal area. I did notice about a drop in my urine output to about a half. That's a big drop to me. But, then I feel bad and can't breathe well with all the pressure. But, I was less POTsy.

3. So, I think I want to have estrogen, but not progesterone. And, I don't want a period, as it makes me feel like I have the flu. Simply put, I am wondering about a future without my uterus and remaining ovary, and go back on flax seed!! (It is actually something I'm going to talk to my gyn about. I have never been able to tolerate hormones before.) What I'd like to do is actually do a month again on the flax seed and see if I feel good again, but I'd need some kind of diuretic to take when I get that bloated feeling because that is intolerable.

4. I wonder about the increase of whey protein and if it had any effect on how the hormones work in my body. Like, could some hormones have needed a higher protein intake? Was I maybe not breaking down proteins in my body, but the whey was easily assimilated in my body? This one I have no idea if or how it may have contributed to all this.

5. My glucose levels I'm sure are more stable than ever, but I still eat every two hours. This morning I had homemade granola that had just about 2 g. sugar, but some seed and nut butter protein, and my glucose only went to 104 an hour after. BUT, an hour later, I was already at 68. I think I read somewhere that your pancreas doesn't bother putting out any food-induced insulin until your glucose hits 110. Apparently my pancreas follows its own rules.

If anyone has an idea regarding hormones, I'd be open to hearing them. Like I said, I felt like the estrogen was constricting my blood vessels in a good way, and thus helping all the POTsy symptoms. I still hit a limit on standing, but I had more stand-up time than normal.

Posted

Hi sue,

That's fantastic that you were feeling better. Do you think what happened is possibly a combo of the

changes you made ?

Fwiw .. I'm post menopausal for about 18 months now and I've eaten flax almost every day since 2006. I just started having hot flushes again two weeks ago after starting creon because I'm low on elastase. I figured i just needed to digest my food better and now I'm detoxing. Well I sure hope this stops.

Btw, have you been tested for digestive enzymes ?

I have hyperinsulinemia too and on my last gtt my glucose only went to 140 range. Well that's what the lab results were anyways. If it went higher, it wasn't caught. It went to 180 the time before this.

So I'm not sure a glucose high would be necessary. Just an over zealous pancreas. Or maybe we just react badly to whatever is in the glucose syrup they give us.

Hope you figure this out. You've got me worried about menstruating now .. Lol ..

Tc .. D

Posted

Hi Sue,

I just wanted to respond as I have been doing some of the same things. I was actually just a few days ago talking about starting whey powder for protein too. I used to have it every once in a while just to give myself an extra boost, but I haven't done that for awhile.

I wouldn't underestimate the effects of the biking 5X/day. That was an 'only' change I made for a month and it had really positive effects. I felt a definite reduction in brain fog, more energy (although still quite limited) and the first inkling that maybe recovery was possible. I have gotten out of my pattern recently for various reasons and sure enough, I feel awful again. My brain fog is back with a vengeance and I can clearly see that little bit of exercise was responsible for making me feel better.

Flax seeds: I tried those for 3-4 weeks. Initially it was good, but after two weeks I had the worst menstrual cramps that I have EVER had in my life!! It was brutal. When I was reading your post, I immediately knew flax seed was the culprit when you mentioned your menstration, then I read your next sentence and realized you had already figured that out :D . After three weeks on the flax seeds, I started feeling really bloated (more than the usually salt/water bloated) and some nausea. I went back to research more about flax seeds and found info about the seeds containing cyanide. It is said that less than two tbsp/day is a safe amount, but after I stopped it, my nausea and bloating disappeared. So I know flax seed and me don't mix for whatever reason.

It is so tough to figure it all out... I hope you get the right combination :)

Posted

Dizzy, I took Creon about 7-8 years ago, but don't remember them making any difference for me. Of course, I was a different person back then, not having gotten POTS yet.

AllAP, hmmm...cyanide. I did have nausea, too, just forgot to mention it. Now I wonder if it was the period that made me feel bad or the build-up of the flax seed. It's not like your routine labwork includes cyanide levels! LOL

Posted

It will up estrogen levels and it not good at all for men. (Neither is soy - good for men. Except in minute amounts.) This subject is well talked about in the alternative field and there are conflicting opinions on it. I never could do flax and am allergic to soy - so neither was an option for me.) Unless, you have a medical reason for a hysterectomy - both the ovary and uterus produce hormones you're entire life and once they are gone - it's really hard to reproduce what they do for you. I had a complete hysterectomy at age 36. I have found that a compounded estriol (weak estrogen) and Red Clover have been my best sources of estrogen and yes, I do feel better when I use them at least a couple times a week. I should be past the menopause stage (your body doesn't stop the hot flashes until it is the right time for your time clock to stop it. I was told this before my hysterectomy that it would be many years before I'd be symptom free of the menopause symptoms - because of the removal at a young age.) I hardly ever have hot flashes now - but, do find using those things to be beneficial to me. I also use a product called EstroSense and that helps to balance all the hormones out and keeps the estrogen from converting into the stronger kinds. If I over use any of these things - I get the breast tenderness that goes along with too much estrogen. I can't take progesterone at all. Not before or after my hysterectomy - was horrible and gives me hot flashes. Estrogen helps women with brain function too and gives a sense of well being. I recently posted an article on the benefits of estroil and it's use (in the last few weeks.)

Issie

Posted

Creon is making a huge impact on my digestion. But so did digest gold when I started it. And

when that stopped working I used candidase and virastop. But then they started causing throat pain in my thyroid

area.

I'm hoping this continues to work this good.

I'm thinking because we have hyperinsulinemia, creon may help you to. It's a pancreatic enzyme.

I'm rethinking the flax angle too. Maybe creon is helping me break it up now and that's causing the flushes.

Posted

Just a side-thought on the blood sugar thing. A lot of people think "less carbs, more protein" to keep your blood sugars stable. True to a point, but low carbs, more good fats is going to help even more to keep them stable (of course if you're having a yummy nutty snack you're getting the best of both worlds I guess). I haven't a clue for you on the hormones...I've been trying to figure that out myself. I feel like everytime I get something figured out, I realize my theory doesn't hold up :)

I hope you're able to have some more really great days!

Posted

Hi Sue,

More similarities between us in the Endo department again.

Your Docs are onto something with no sugar. As a teenager when I had the severe hypoglycemia, way worse than now, our family DO put me on a NO sugar diet, I mean nothing with sugar I became a label reading guru.

After a year, no more almost comatose levels of hypo, back then I was hitting 20's and 30's. The lowest I go now is 50's.

As far as getting rid of your repro parts, that's what I did last year.

I was only 30, but my Docs felt it would help ease my POTS symptoms because I was most symptomatic around me cycles and they were never regular and my Hormone levels were as follows.

Estrogen 8 or 9, LOW someone my age should have been in the 100-200 range.

Progesterone, Undetectable

Testosterone, Undetectable.

So the hysterectomy was a chance. My surgeon was glad he did it. Premature ovarian failure, they were shriveled up and cysts everywhere.

The put me on Estrogen, the Bio-Identical Patch.

He wanted my levels to be in the 40-50 range which would have helped my bones but is still a menopausal level. Even on twice the amount of Estrogen we never got my Estrogen up over 26 and I felt HORRIBLE.

Plus it was acting on my mast cells. I was constantly itchy, crabby, moody, bloated.

Tried adding progesterone, almost would up in the ER over a dab of cream about an 1/8 of the normal dose.

I had my hyster on June 1 and by November 1 I decided no more Estrogen.

Now...... I feel better.

My symptoms are still horrible, but the ones the Estrogen caused are gone.

I don't regret the Hyster because now I don't have the highs and lows like I did.

Also since the Hyster and stopping Estrogen........ my blood sugars have been better than ever, doesn't make sense, but even my A1C's are back down to 5.6 where they had creeped up to 5.8 and while on the Estrogen to 6.1.

I don't eat flax, but I do take 1 flax oil pill a day. The dose is 3 but I only tolerate 1.

I can't tolerate whey protein, never have been able to break it down. No soy either. I deal well with the goat milk protein or the Hemp protein.

My pancreas doesn't work right either, and I still have strange glucose reactions. My strangest is to plain old slow cooked in water gluten free oatmeal.

Supposed to be great for even diabetics. Raises my glucose to the highest levels, over 200, and plummets down to 50's.

Used to be my stand by food, ate it all the time, every day, and now no more.

Posted

So Mayo came up with nothing for you? Not even a guess? Geez. Well, anyway it's good to hear you say you felt really good for a while. Sounds like you're linking this mainly to the estrogen - not the bike or the diet change? Or you think it's the combination? I know hormones play a role because like clockwork the week before my period I'm doing better - the day I get it and for the next week or two I'm worse. Could menopause in and of itself being causing some of the "pots" symptoms? Keep us posted on the flaxseed and hope it proves to be helpful for you.

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