I've been researching non-stop since I got the NutrEval test back. I think I need to further pursue a possible mitochondrial disorder, but just don't have the funds to do it. For now I figured I'd just start on some of the supplements suggested and see how I do.
Well something that I started taking is making me feel terrible! I've never experienced this feeling before. I've had chronic, constant nausea. I feel hungry, but as soon as I start to cook, I can't possibly imagine actually eating the food. I've been making myself eat. My sitting heart rates are way up. I was tachying away at 122 while sitting at my computer chair. OMG!
Yesterday it was beautiful outside, cool with low humidity and I nearly collapsed at the park while taking a gentle stroll. Normally where my HR is like 118, I clocked in at 152, with shortness of breath and felt like hell.
Here's what I started taking:
Fish oil
l-carnitine
P5p (B6)
SAM-e
Today I took nothing, so we'll see how I do. I feel like a piece of shit today. Worthless. What the hell am I even doing here. I can't do anything. My sister wants me to help her buy some trellises from the store and I'll have to tell her I can't do it. What a worthless piece of shit I am. Seriously.
I'm sick of this.
6 comments:
Hi Dana
Ease off the methylation supplements! Taking l-carnitine and SAME together will be giving you quite a kick. Maybe reduce the dose or try every other day. I now only take folate and mB12 once or twice a week, as my liver couldn't cope with the methylation supps, for whatever reason - detox or something. Are you still taking your beta blocker? I am now pretty much POTS-free on mine - it is such a relief. I can walk around for a couple of hours now.
feeling so ill HAS to do with the methylation supps - what else would it be?
take care
Nicola
I have no idea what's going on with me. haha My NutrEval test showed that I have impaired methylation paired with low B12 and folate (despite DAILY injections!!), so I figured I'd start up. I had taken SAMe for at least 4 weeks before and felt no problems on it at all, so I don't think that was it. I had never taken l carnitine before, so maybe it was that one. I still felt ill yesterday even though I didn't take any supplements. /sigh
Have you ever had your urine MMA checked? I ask because I never did and just assumed it was low because I was taking daily injections. Well I assumed wrong. I have like 4-5 markers that suggest I am B12, B6 and B9 deficient.
I'm not on a beta blocker right now. I was trying to stay off of it because I thought Cleveland Clinic wanted to get me in for more tests, but they have been as slow as molasses. I'm not very happy with them right now.
Regardless, the beta blocker does nothing for me in the heat. I have the same severe heat intolerance which makes my HR's go through the roof even if I'm sitting!
I'm soo agitated right now. I wonder if I need to try stress dosing to see if I feel better.
Hi birdlady! Sorry to hear that you're not feeling well...I ran into this helpful blog soon after I realized I had mercury poisoning. I'm a Medical Doctor, but I believe we can and do learn a lot from our patients when we listen to them. I just ran across a book that I think (hope) you may find helpful--it's called "Feeling Fat, Fuzzy or Frazzled?" by Richard Shames, MD. (it also addresses Fatigue).
Here's the amazon link:
http://www.amazon.com/Feeling-Fat-Fuzzy-Frazzled-Reproductive/dp/0452285569/ref=sr_1_2?ie=UTF8&s=books&qid=1278019172&sr=8-2
It may be that with all of the heavy duty synthetic steroids (e.g., Florinef) that you've been taking, which initially made you feel better, are now wreaking havoc with the total balance between your thyroid,adrenal,and sex hormones. You can't just treat one without affecting the others, and I suspect that's why the crashes are happening. Without a true balance between the three, you'll always feel bad. This book seems to have a clear and empowering plan to help us do that (I just read it last night)!
Good luck,
Laura
Hi Laura! Unfortunately I have adrenal insufficiency so I have no option but to stay on the HC and florinef. I've tried multiple times to wean down on the HC and every single time I get to 17.5mg I start to go into crisis. It's not right away, but the downward spiral begins within 2-3 days on that dose. I also post on an Addison's board and NO ONE has the symptoms I have. My heart rates are not related to my adrenal problems and my adrenal problems aren't related to the heart rates.
My thyroid levels are decent.
TSH-1.590 (0.450-4.50)
FT3-3.2 (2.0-4.4)
FT4-1.32 (0.82-1.77)
RT3-362 (90-350)
I've tried taking armour, a T4/T3 combo and just T3. Even on tiny doses, my heat intolerance and standing HR's become even worse if you can imagine that! haha Increasing my metabolism at all has been very very bad, so I'm stuck with this sluggish metabolism. When your standing HR's while on thyroid meds run in the 170's, you start to reconsider taking any thyroid meds.
In addition to that, I also want to keep my TSH within normal limits. As soon as I go on any thyroid hormones, it drops off very quickly. Since I've had to go with mainstream doctors, if that TSH isn't within normal limits, they just blame everything on that which I know is not true. At Cleveland Clinic I had like 3 nurses tell me that I must be hyperthyroid. The one nurse had to tell them that "her TSH is normal". That's all they care about so going on thyroid meds would in fact make things way worse for me.
I've had these symptoms for 10 years. Well before I started HC, florinef or took any thyroid meds. What I've been documenting on this blog is my attempt to fix my heart problems. We can't blame the things I've done in the past few years for my heart rates when I've had this long before I started any of these meds.
Even with all of my health problems, my menstrual cycles are nearly perfect. Every once in a while, I'll have a few short cycles (24 days) or a few long cycles (36 days), but those are the exception. I am back to my normal 29 day cycles. My latest sex hormones were good too.
FSH-3.5 (1.5-9.1)
LH- 3.4 (0.5-16.9)
Estradiol-198 (60-211)
Progesterone-19.9 (4.4-28)
Testosterone 60 (14-76)
Some might say that my estradiol is high or my E2/Progesterone ratio isn't optimal, but I feel good with those levels. I don't have heavy periods or endometriosis or any of those female problems I see a lot of people complain about online.
I'm pursuing other options right now with a mitochondrial doctor!
oh, wow...I must admit that I last looked at your blog a while ago for your advice on mercury detox, and back then you were feeling better on the steroids. I checked in now and saw your latest post about feeling worse...but I didn't know the in-between stuff. I still think it offers some good alternative ways of tweaking things to maintain a heathier balance, although with your case I don't know....in any case, I wish you the best of luck!
LC
It's okay Laura! haha I'm sorry if I came across cranky. I've been so cranky these past few days for some unknown reason. I was about to make a post about it!
Unfortunately I haven't chelated for a very long time and my blog has sort of drifted from that aspect. I still think that heavy metals play a role in my problems. I really need to try again to see what happens. When I did it a few years back, my adrenals were on their last legs. Now that shouldn't be an issue. :-)
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