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 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 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!

Wednesday, December 23, 2009


Today is a sad day in my world. I got my catecholamines back and they tell me absolutely nothing.

Epinephrine, U, 24hr 4 (0-32)
Norepinephrine, U, 24hr 27 (0-140)
Dompaine, Ur, 24hr 241 (65-610)

Yeah, so I guess I'm just doomed for the rest of my life like this? I mean this is unf$%#ingbelieveable to me. I hate to swear, but I have no life when I'm like this and sadly winter hasn't made me any better.

No one wants to help me unless I'm willing to take xanax or adderall and I'll be DAMNED if I take those stupid pills.

Tuesday, December 22, 2009

Tested My Catecholamines

On Sunday I collected my urine for a full 24 hours to see what my catecholamines are doing. Is this why I have POTS (Postural orthostatic tachycardia syndrome) ?

There are several different types of POTS. One is when your catecholamines are high and one where they are low. I suspect that mine are high, but we'll just have to wait and see what the test shows. I doubt I'll see the results until after Christmas, but it may be as soon as tomorrow.

If the results do show something, I'll be contacting my EP. He's a total idiot and should have ordered these HIMSELF or collected them during the damn tilt table test like what most POTS "specialists" are supposed to do. The only reason why he was a "specialist" is because he's HEARD OF POTS. Whip dee doo! I'm going to contact and tell them that he did not do any diagnostic testing other than the tilt-table. I guess he's a good doctor if you don't mind taking prozac, xanax, and adderall! Then again if you were on all 3 of those drugs, I doubt you'd care about much of anything.

Monday, December 14, 2009

Stomach is Hurting WHY?

My stomach has been out of control. It always hurts anymore at least a little bit and I've been getting sick a lot. I'm always sick first thing in the morning and even sometimes like an hour afterward. This has been getting worse since going gluten free, egg free, strawberry, tomato and dairy-free (unless it's the raw milk).

This is what I ate today in no particular order:

Whole Chicken leg with no seasoning or sauce
1/2 cup of ground beef with salt
Rice with butter/salt
Mixed veggies with salt
Celery sticks with peanut butter
Enjoy Life chocolate chips hehehe
Chai tea (red tea) with 3 tbls of raw milk
1/2 cup of coffee
2 Oranges
1 banana

Where am I going wrong here? Why is my stomach hurting tonight. Why am I bloated?! It is really starting to drive me crazy because I just can't figure this out now. I had quite a few high carb foods today, but I just don't know. I'm not itchy tonight though, so go figure?! I'm thinking about doing the stool test from Enterolab to see what is going on with my stomach. They can test for a whole bunch of things. I just don't have the money for it, but when I do, I think it's a sure thing for me.

Saturday, December 12, 2009

I think I have a lot of food allergies

I really think this is part of my problem and why I'm just not feeling any better no matter what I do. I know that there is something still bothering me because that DAMN itchiness on my legs has NEVER gone away. I am soo sick of it and it gets so bad sometimes that I have to take zyrtec. There is no way around it.

Looking at my food allergy results there is one thing that I haven't cut out yet and that is Baker's Yeast. My cousin, Chelle told me that having an allergy to Baker's Yeast can be just as bad as an allergy to wheat, gluten, eggs or even dairy. So I decided to start doing my own research and she is absolutely correct!

60-85% of people with Crohn's Disease will test positive to Baker's Yeast antibodies. The medical term for antibodies to Baker's Yeast is anti-Saccharomyces cerevisiae mannan antibodies. It is thought that your body starts to confuse your body's natural yeast for this Saccharomyces cerevisiae mannan and that's why you get Crohn's Diease...In addition to this scary find, one of the companies (Enterolab) that does genetic testing for Celiac also says that if you test positive for Baker's Yeast that there is high likelihood you have Crohn's Disease....Great so that's two reputable labs/medical studies that are saying the same thing. Obviously I need to stop eating Baker's Yeast. Now the interesting thing on my test is that I am NOT allergic to Brewer's Yeast. That makes things a lot easier as Brewer's Yeast and Baker's Yeast are used in a ton of foods.

Here's a list that includes BOTH brewers and baker's yeast foods.

Even though I'm already gluten free, I was still making GF bread for us that has yeast in it, so I need to cut that out for sure. I'll have to do some more research to see if I need to cut out all those foods on that list above. Even though I tested okay for Brewer's Yeast should I still cut it out too? I have no idea right now. I am still trying to sift through all this information.

Credit goes to this lovely little blog for a lot of the information in my post.

Thursday, December 10, 2009

Yep I Have RT3 Dominance

Well it is official now for sure. I have RT3 dominance even WITHOUT armour. NO wonder I felt so terrible on that crap. This is why doctors need to test this before you even go on Armour no matter what your numbers look like! If your doctor is not testing Reverse T3 before putting you on Armour, you need to set them straight so you don't suffer for months like I have.

There were my labs-
TSH 1.590 (0.450-4.50)
FT3 3.2 (2.0-4.4)
FT4 1.32 (0.82-1.77)

Now my numbers here don't look so bad. Most docs would send me on my way or say that a little bit of armour might do the trick....But look at my Reverse T3!

RT3 362 (90-350) High

...And there it is. My problem. My body can't convert it's own T4 into T3 so how can I expect it to convert Armour? Essentially I am functionally Hypothyroid. My thyroid is making enough hormone, but a lot of RT3 is bound in the T3 receptor sites, which does not allow T3 into the receptors to do their job. I am running around hypothyroid WITH thyroid hormone in my blood! The treatment for this is to go on T3 only. Every doctor has their own method.

This doctor wants me to start off with 10mcg of T3/day, dosing it 5mcg in the AM, then 5mcg at dinner. I am supposed to work my way up pretty quickly to 20mcg, dosing it 10mcg in the AM, then 10mcg at dinner time. I have not started this yet, but hope to do so soon.

I'll be sure to keep everyone posted!