Monday, December 28, 2009

What Should I Do Now?

It's no big secret that I've been rather frustrated these past months. Looking at my posts, I haven't exactly been in a good mood. Sorry about that folks. I tend to use this blog as a way to vent my frustrations because I don't have any close friends to talk to about all of this.

Emotionally I have been a wreck, but thanks to some EFT counseling I am doing much much better. I'm not 100% better, but day-to-day my anxiety has made a huge improvement. I also think getting off the Armour was helpful as it was converting to RT3, essentially making me more and more hypo. Anxiety and depression is a huge hypothyroid symptom.

Now that yet another year rolls around and I still have not found a fix for all of my problems, I need to stop and figure out what to do next. Do I just give up and realize that I will always have this heart problem? Do I just start to chelate again? Do I keep searching for more answers and risk the chance of being in the exact same spot next year at this time?

I thought going to this new EP was going to be "the breakthrough" like with so many other doctors and yet, here I am, looking back realizing how much of a waste it was. I emailed Dinet.org and told them I was not impressed at all with this doctor. He's no more a POTS expert than my regular primary care doctor. He was listed on their website as a doctor who dealt specifically with POTS.

Here's the direction I am heading next and this will likely be what I'll be dealing with into the next year.

What if the "POTS" was simply a mineral deficiency? I have been quite deficient in Vitamin D, ferritin and Vitamin B12 at certain points in my life. What if there are other more obscure mineral deficiencies that I haven't even tested. With all the natural doctors I've been to, none of them have done a comprehensive nutritional panel on me. Does anyone else see a problem with this?

My wonderful husband who spends HOURS researching for both of us, came across this very interesting post from a lady on Dinet.org. In this post, she was found to have a severe vitamin B1 deficiency. She was placed on a specific fat soluble type of vitamin B1 and noticed a huge increase in symptoms for the first few weeks. Then after that, she was practically CURED of POTS.

About 2 weeks ago I started using this cream and noticed a significant increase in my symptoms including gastrointestinal. I haven't felt this bad during a winter month for as long as I can remember. It got so bad, that I discontinued the cream about 4 days ago and oddly enough I am feeling a touch better... Now I am looking to get these vitamins tested, so I can decide what I need to do from here. Her post was very encouraging because she now holds a busy schedule/job.

I am now looking at yet ANOTHER DOCTOR that looks specifically at nutrition and also prescribes bioidentical HRT. That's about as good as it gets in my opinion. I can't give up. I'm only 25 years old and if I ever wish to have a family, I've got to get this heart rate under control.

So there you have it. We'll see what this year brings. 2009 was probably one of the hardest on me emotionally. Lots of up's and down's, but I made it through!

4 comments:

Erika said...

I've never taken adrenal meds like Cortef, but I have taken Cortine. Looking back, although I temporarily improved, I ended up more burned out than before I started taking it. Plus it did affect my heart and increased my yeast problems. After suffering so badly for many, many months, I finally took the advice that strong adrenal support is for short term use only and I stopped the Cortine. I slowly started trying different adaptogenic herbs and found some relief. Licorice root has helped me the most, but I do use others too. Also, when I started taking bioidentical estrogen and progesterone, I had to reduce my dose of compounded T3 - just something to keep in mind. Lastly, when I started chelating with ALA I couldn't handle 25mg every 3 hours and lowered the dose to 12.5mg, but even that was pushing it. Surprisingly, I've been able to increase the dose pretty quickly. I do take DMSA and it does help with the side effects of the ALA. I wonder if your body could handle one round of DMSA a month to help with your lead issues. Wishing you improving health and lots of comfort in 2010.

Birdlady said...

Thank you very much for your comment. I think some people can heal their adrenals, so HC (or cortef) long term could be detrimental. This will be different for each individual, which is what makes hormone replacement so darn difficult.

I had an elevated ACTH with my low cortisol, so part of me wonders if I'll ever be able to get them to "heal". The cortef is the only thing I'm on now and when I try to wean (even slowly) it's really really bad. For the time being I'm going to stay on that and see what else I can do.

imgeha said...

Hi Dana

long time no contact! Hope you're doing OK. As you're asking 'what should I do now?', I thought I'd post this link

http://aboutmecfs.org/Rsrch/GSHMethylation.aspx

scroll down to read about cardiac insufficiency and orthostatic tachycardia. Briefly, this researcher proposes that OT is due to a methylation block (caused by mercury) which can be overcome by taking methylfolate and methyl B12. I have been doing this since September, and have had some (erratic) improvement in the OT. Still bad at certain times of the month (the luteal phase particularly), but periodically gone at other times.

This guy explains why its important to have the active forms of B12 - others simply don't work.

http://forums.aboutmecfs.org/showthread.php?188-B-12-The-Hidden-Story

I know of at least two others who have done the simplified protocol and whose OT has gone. Seems worth a go to me. I have stopped chelating for now, as the ALA chelation got so difficult and I was on such a small dose it was pretty disheartening.

Anyway - lots for you to read. Just passing it on.

Take care

Nicola

Birdlady said...

Thank you so much Nicola. I will definitely check this out! I know that I have problems with B12, but my stupid hormone replacement doctor doesn't get it. He tested my B12 again (but I had been supplementing with it, so it is a completely inaccurate view) and he says it's great at 600. /sigh Why don't these hormone docs get this nonsense? He won't prescribe me B12 injections and having to go down to the one docs office for them twice weekly is quite frustrating and $$. Even the doc who does the injections, doesn't understand that serum levels mean nothing once you are supplementing with it. There's a really good book out there about B12, but off the top of my head I can't remember what it's called.

I am also looking into a B1 deficiency. There's a lot of similarities there too.

I'm sorry to hear you had to stop chelation. I definitely here you on that front though. You know it got so bad for me too and I would never completely improve on the off days!

Take care of yourself and it's wonderful to hear from you!