Remember my fairly recent encounter with my cardiologist............

After being diagnosed for years with vasovagal syncope, and seeing a cardiologist 4 or 5 times already he says to me: "Well, it definitely seems like you have some sort of Dysautonomia." NO! YA THINK?!

He wouldn't return any of my calls after the visit I had with him a couple of weeks ago. Well I made him then give me a test for Homocysteine and Methionine because I'm fairly certain my methylation cycle is screwed up and I told him I wanted to address that so after I left word with a secretary, I FINALLY got that lab test set up, yet he still never called me back. I needed a recommendation for an endocrinologist too. Couldn't get it out of him. Then recently I had to go get my own medical records in person for the Homocysteine and Methionine and go to his office secretary to personally ask her to have him call me back because he hadn't done so yet. My Homocysteine came back 45 (5 to 15 mcmol/L is the normal range) and my Methionine has not come back from an outside lab yet.

He wouldn't call me back to discuss my lab work results with me. So he had his secretary call me to tell me that: "He says he doesn't know what high Homocysteine levels mean in relation to your dysautonomia and there's nothing he can do." ?!?!?!?!

That's it? C'mon!
High homocysteine levels in any regular heart patient means you have a MUCH greater increase for heart disease and athersclerosis. Any Cardiologist knows that! There are legitimate things he, as a Cardiologist, could tell me to do or prescribe me to lower that homocysteine level. Instead he ran away. Wants nothing to do with me. I told the secretary to finally get a recommendation out of him for an endocrinologist, so since SHE's apparently on the ball, she did just that and got right back to me bless her heart.

I went to my primary doc on Friday for a regular yearly physical. I told him what happened. He said, "I'm not a cardiologist and even I know that level of homocysteine is really BAD. You need to be taking folic acid." We discussed it and I said I would try the folic acid and if that didn't help enough could I please get vitamin B12 shots too. He said that sounded fine.

Anyway, about the cardiologist..........
You know it's weird because I've had PLENTY of doctors be flat out rude to me and tell me it's all in my head, or I'm a drug addict, or I'm passing out because I'm preganant, and I'm lying to them about anything and everything--- But this is the First time I've had a doctor simply RUN AWAY from me. I asked for a test I told him would probably be significant and I was RIGHT, so he ran away. Wouldn't even say it to me himself! Had his secretary do it for him!

I know it goes without saying, but... - find another doctor that has a clue.

Whenever I am told I need another test from a different specialist; I do as much checking as possible on them from the Internet. I also ask my PCP to call the specialists directly and ask if he/she has familiarity with autonomic dysfunction. If not, we try another. My PCP realizes that she needs to get help to help me; and if the specialist she wants me to see doesn't have a clue - they cannot help her help me.

Regards,
Bob

I'm a bit frustrated because I need to just have a generic cardiologist in the Los Angeles area to monitor me and give me Toprol prescription. My diagnosing cardiologist is in Maryland. I don't really live there anymore.

I don't think this cardiologist "gets" this. I didn't go to him for treatment or to fix me. I went to him for maintenance and to possibly let me get a few lab blood work tests I request for my own knowledge. My Maryland cardio had told me to get a Los Angeles doctor just to check me out every 6 months and to have someone in the area who knew of my illness in case there was an emergency and the ER needed to contact a local doctor for input.

So I picked a guy from UCLA. It's the best medical site around here. If I get a different cardiologist from the same hospital then I'll definitely get a really bad response because they're all buds over there and the first one I went to at UCLA will be offended thus blabber about what a crazy bi-otch I am.

Nitekitty, this only shows credit to your brain. You are incredibly well-read on this subject. There are a several expletives I would use to describe your cardiologist. I have this theory that each of us need a smart doctor and a stupid doctor. The smart doctor tells us what to do. And we tell the stupid doctor what to do. The stupid doctor writes referrals to other specialists, prescriptions, and testing according to what we have read and what we think of the smart doctor. I used to have a GP who would write me up for tests and referrals as often as I asked for them. That GP was worth his weight in gold. Bless his heart, he didn't have a clue what he was doing--I did--But at least he wanted to help. Now I'm here without my beloved GP. My new GP has that vibe of "I can't belive you are suggesting something to me". I had a referral to see an endochrinologist in Missouri and now that I'm Colorado, my docs here don't want to send me to an endo! I'm so angry! If I had stayed in Missouri another month, I would have seen an endo already.

Anyway. I'm sorry that guy is nuts. I hope you can play the system in such a way that benefits you the most and find a new doctor. You're so smart! You can do it! I still think the smart doc/stupid doc idea would work. Too bad that system won't ever be set up.
GoArmy

NItekitty,

We still haven't heard from our pediatrician since I saw him March 5th. The paperwork exchanged that day was never returned, and a fax sent March 14th has yet to be acknowledged.

Meanwhile, his office assistant, Rhonda, continues to write any referral I want (stupid doc/smart office assistant?). She will copy any part of his record or fax anything wherever I need it to go. No one seems to notice the AWOL doc except me.

We have moved on. His primary doctor on paper remains the AWOL one, but in reality, the developmental ped. dr. is handling everything, including paperwork needed from school.

It feels REALLY weird, but I just want to get things done right now. I will dismiss him formally off of my insurance soon.

Go figure,

Judi

Hey Nitekitty,

Don't forget that if you do decide to go with your primary care on folic acid and B12, get the bio-available forms as there is a very good chance that you can't metabolize the usual forms in the pills (they have to go through 4 transformations for folic acid and 5 for B12, before the body can use it).

That may be a big part of the methylation problem. You can get the final and bio-available form of folate from metagenics. It is called FoloPro and it is L-5-methyl tetrahydrofolate. But if you or anyone else with dys does take it, start with a tiny dose--a quarter of a pill max, cause if you've been lacking it a long time and start to get it in spades, your body can go ape with detoxing.

Same with B12--Perque's sublingual called Activated B12 Guard. It is hydroxocobalamin, the next to last form before methlycobalamin, the form the body actually uses. It is a bit risky to take the methyl form because it can bond with any mercury toxins in your body and cross the blood-brain barrier. And we all should be able to make our own transformation of hydroxy to methyl safely.

I know you know most of this--just writing it out for others to tip them off to some of the pitfalls around those two vitamins. Many, and probably more than half of us, are like to have genetic inabilities to metabolize the usual forms of one or both of these and methylation as well as a host of other functions need them vitally.

Sorry to preach, but I have walked down some of the wrong tracks with this myself. I'm now taking the bioavailable forms plus 3 other critical supplements (like intrinsic factor which is needed to process B12) to get the methylation process going properly. Takes time, but big changes so far.

Hi Nicekitty,

I was seeing a new gastroentorologist. On our last visit he said to ring me if 'his plan' for me did not work. I rang him allright. Three times in 2 weeks leaving messages that 'nothing' was working (this after him telling me I had to be careful to avoid developing a mega-colon). I waited a further few days and still not hearing from him I rang him and left a message with his secretary telling him he "was fired." I never heard from him again.

I feel that he was a total flake and did not deserve the big money I paid him for my visits and what was it with giving me a plan to follow, telling me to ring him if it didn't work and then not returning my calls?

Was he just trying to terrorize me by scaring me with 'mega-colon' and was he 'f'ing with my mind or what? He didn't even ring me to ask me why he was fired? What a total waste of time and money he was.

And the hours I spent at home waiting for his call that never came. Hello? He had to be an ass for sure.

It's okay. Whenever a doc asks me about my gastroentorologist I tell each one about him.