Here's part of our problem.

Even if there was ground breaking, revolutionary research in successfully treating migs. how long would it be before our docs would actually use it? If at all?

I just had another go around with my doc last night about testosterone replacement therapy and my family history of prostate cancer. She is holding onto 15 y/o info that is flat out wrong and there is loads of research to prove it. Every doc I have discussed this with shares her same opinion. The first study was done was right in our backyard at the University of WA. The study has been meticulously peer reviewed since it upsets a huge apple cart. It's been duplicated several times over in different countries. Their incorrect info is killing men right now as you read this.

All the details are irrelevant to this post. But being someone who researches different conditions I am dealing with I found a way around it. But I still need to have cooperation with my doc for the sake of my health.

So if docs can't stay up on life saving new info then where are we with something not considered life threatening? Something that many docs even blow off or already under treat.

Here is an excerpt I found this morning about a doc that was sued for implementing new research on prostate cancer screening protocols.

"As is well documented in the literature, physicians take quite a long time to change their patients’ protocols. Thus, we know that many practicing physicians are not using well-proven interventions or implementing well-publicized national guidelines. The legal definition of standard of care protects these physicians and encourages them to change slowly, if at all. It is often claimed that malpractice is a mechanism for holding physicians accountable and improving the quality of care. This case illustrates quite the opposite: punishing the translation of evidence into practice, impeding improvements to care, and ensconcing practices that hurt patients. In our legal system, the physicians who are slow to change are the winners."

Here is the link to the full article but it all has to do with prostate cancer. But it could be any new research on any medical condition.

http://www.sciencebasedmedicine.org/?p=443

So many of us have docs that might be treating our migs at great risk to themselves by going outside the standard of care. Even if the standard of care is completely worthless.

IMHO health care reform absolutely must included an entire change to malpractice lawsuits. Affordable health care is worthless if docs are going to be afraid to apply new treatments. If they are going to sit back and wait for enough other docs to be trying/using it so that it finally becomes a standard of care.

My problem is that men in my age group with lower testosterone levels have an 88% chance of being dead within 14 years. I don't want to be dead before I hit 63. But my doc won't prescribe HRT because my cholesterol is a bit high.

The new research shows that low T WILL CAUSE HIGH CHOLESTEROL. And hypertension, high blood glucose, depression, weight gain, exaustion, low libido, infertility prostate cancer and thyroid problems.

I find this absolutely dangerous and unacceptable.

I faxed that research to her and it is ignored. So I found a source for bio-indentical testosterone which is safer then the synthetic that is prescribed in the US. It's also cheaper for me since my insurance will only cover half the cost.

But that forces a doc to have to monitor and screen for something they don't want you to do. Never mind that I have had some amazing improvements using it. Improvements backed by lab results.

7 million men in the US have un-treated low T. That means that over 3/4 of them are on "death row" to die within 14 years.

So my question is what else are we not being adequately treated for? Why isn't the news media covering this?

The media only wants to publicize information that is sensational. This just isn't sensational enough. It is real... When was the last time you saw anything on the news that wasn't a fire, a shooting, something politcally inflammatory? It is sad that we are more well informed than our doctors.

It is the same for Fibromyalgia. I have read several research reports that state that Fibromyalgia looks like, acts like and should be treated as a neurological disorder and a neurologist is better able to prescribe the proper medication than a Rheumatologist. Fibro is NOT arthritus or an autoimmune problem.. it is a mis-reading of pain signals IN THE BRAIN!! But can I get my neuro to take over treatment? or My GP? No.. they want me to go to another specialist, spending money I don't have to get treatment that is subpar, especially since all my major issues should be treated by a neurologist as the are all neurological in nature. I'm so beyond frustrated. My meds should all be coordinated and monitered by ONE doctor to avoid over-medicating me as each doctor has their own idea of how to treat me and since none want to take over my meds, I end up with this drug from that doc and that drug from this doc and taking toooo much!

I have no answers for myself other than to find a better neuro, one who is willing to listen to someone who is taking an active role in trying to get relief with a minimum of meds.

And we absolutely have to read up and ask lots of questions about any condition we are dealing with. My wife was within a coupe weeks of cardiac arrest from hypercalcimia. Her calcium level was 12.5 and 15 is when the heart stops. She collapsed at work with a massive kidney stone attack. The CT showed 24 of them and one large one that was stuck in her ureter.

Her doc was treating her for menopause at 41 y/o even though her family history is it doesn't hit until the late 50's. If she didn't spend a few hours researching and insisting on a calcium test it would have been bad news. Even after the doc got the results nobody bothered to call her. The ER doc had to call during the kidney stone attack.

We have to be informed medical consumers. And with the internet it's easier now then ever before.

About five years ago I was seriously injured in an altercation with a psychotic patient that resulted in me not being able to work for almost a year.

At the time I had what I thought to be a great GP. She was young, a professor at one of the best medical schools, and therefore, in my mind, up to date on things.

She basically put me on bed rest. I was an idiot and listened, even though all the newer literature suggested that I satrt physio right away and keep moving. She woudl not even refer me to physio, and because it was a work injury, I needed her referral for it to be covered.

As a result, I wasted at least six months of recovery time. When I finally insisted on physio and saw one, the physiotherapist was so angry about the state of my injury. She blamed the doctor 100% for making it way, way worse by following old guidelines for this type of injury.

She said the injury may have been able to have been resolved in a matter of months if I had been able to work the area rather then let it seize up.

I absolutely hate it when the medical community allows itself to stay entrenched in old methods. I understand that we cannot chase every single new idea, but once a certain level of research has been done to prove outcomes, it should at least be considered. So frustrating!!!!

I have eurythroid hashimotos Brent. The protocol is that while your TSH level is within range you will NOT be treated even though your thyroid is being eaten by your antibodies.

Just like your problem, research shows treatement does lower the antibodies, but tough luck, that is not the protocol, wait till your thyroid is dead.

Reading has led me to many examples of this. Bazaar examples such as alcoholism and adrenal problems are linked, but alcoholics aren't tested for low acth or cortisol as a matter of routine. The research is ignored.

Even worse though as that in many paths I've gone down, the research just stops. Total dead end. The funding is split up into tiny slices so any research into trying to solve problems as a whole is totally impossible. The endocrine system is researched in tiny little bits. Not as a system. Not as part of a whole having different and diverse effects.

I wonder how future doctors will review our current medical practices. I tend to think that they will regard them as barbaric, handing out pills for depression when not looking for the underlying physical cause of why someone is ill.

Unfortunately, picking a doc because s/he's young and recently out of school is no guarantee that you will receive the best of the latest care. My surgeon is in his 70s but this guy is always going for training to learn the latest techniques. He also is very fit, athletic and practices what he preaches about exercise and diet. Maybe he's the way he is because he grew up very poor and has had to work very hard to get where he is. He relates to his patients more than any other doctor I have ever met. He has impeccable personal integrity. But how does one find a doc like this without spending truckloads of money searching?

Ironically, even though he's a surgeon, he is the only doc who ever helped me with my migraines at all. He freely admits that he doesn't know much about migraines but he was the one who introduced me to triptans. And at that, he gave me a bunch of samples instead of suggesting that I put out the huge dollars they cost, just to try them.

Chris

Interesting and good post Brent.

Malpractice is an issue. What the gold standard level of treatment is an issue. How good are the docs is an issue.

All of them are a juggling act--you know this goes.

I'm not in favor of much tort reform. I would like to see jail time added because of some of the stuff that goes on.

The prostate cancer issue is important...I know a person that has just been diagnosed with prostate cancer. Somewhat elevated PSA, did find a lump on DRE, and biopsy was positive--sent out to a reference lab for confirmation. Early stage, and radio-seeds will be used. Hopefully this will knock it out entirely. We'll see in the months and years to come.

The "T" issue is complex. Docs need to understand what is driving Total T and % Free Circulating T. Either can be off and percentages can range pretty wide. You can have a low total T but a high % circulating. Both need to be measured. And at the lab I'm having work done, it's taking 5 weeks for biochemical work-ups. Not good.

The pituitary sends signals for T production, and from there, tons of things can get in the way. Supplemental T such as Androgel can do wonders--it definitely helps with migraines. But the pitfalls can be huge.

Low T is destructive. Supplemental T can be just as so. My endocrinologist put me on it, and I gained a lot of weight in a very short time. Killed off my migraines well, made my muscles feel better....but side effects.

In certain classes of patients, and definite cardiac goofballs like myself, it can be dangerous. It shot up my cholesterol 150 points. Deadly.

To go back on it, I need cardiac clearance. I probably need a couple stents. I probably to be on the safe side need a pacemaker. But T is necessary and important. Just to see if I can go back on T, I need to have 6 doctors involved. This isn't the norm, but for me it's needed. Cardiologist, Endocrinologist, Opthamologist, Dermatologist, FP, Urologist. Add the sleep doc to make sure I don't croak during sleep.

Most of this is caused by my tumor on my pituitary stalk. The genetics causing cholesterol issues is another. This person that has prostate cancer is a relative, which will cause my docs to do their own work.

All of this is complex, and not clearly falls within the guidelines of what a doc should do and what they shouldn't. This is the bind that causes all of us to end up in limbo with no treatment.

As you guys say, being a smart and savvy patient brings treatment to a whole new level--but you need good docs to too.

Whatever your facing everone, good luck!

My low T is from an ongoing structural problem that was fixed but the levels have not climbed real fast. Aside from very slightly elevated cholesterol, all endo values are normal.

I just want back what should normally be there in the first place and at the right levels. And I have no cardiac history on either side of my family. Having a T level of an 80 y/o man is not going to serve me very well at 46.

And that new study out is disturbing to say the least.
http://www.research.va.gov/news/press_releases/testosterone-071906.cfm

So I will proceed carefully but will fight to not die from doc indifference.

I do my own research and rely on my doctor only for meds. So far, I have been given everything that "I" have suggested. I really do feel I know more than the doctor on migraines, and we all know our bodies better than they do. Too bad they are the ones making the money and we cam barely afford the medications.

Fascinating thread - thanks for all the insightful and well researched comments and posts. I love learning.

Very interesting topic.

The organization I work for has a purpose of trying to make bench discoveries make it quicker to bedside. I've heard the current average is about 20 years. I don't know that this particular angle has been thought about. That things are out there but the physicians aren't picking them up for various reasons.

We need a system that makes docs feel safe to use new research without fear of being hung out to dry if they are sued. Just defensive medicine alone is a monumental expense itself. Then couple that with the risks of using the latest research that is not part of the "standard of care".

So we pay more and get less.

Then we push the docs into a rock and a hard spot by reading and asking about new research.

The good news is that it will draw more people into complimentary health care. We can read the new info and find out how to treat many things ourselves. I have done that several times with good success and with very little money.

The internet gives us unfettered access to the latest info and the ability to buy products that are not in our locals nutritional stores.

Right now the avalanche of info on Vit D3 is going to change entire medical paradigms. It's cheap, easy to get and safe to use.

If I waited around to hear about it's benefits from my doc it would have taken decades.

estre004 wrote:I do my own research and rely on my doctor only for meds. So far, I have been given everything that "I" have suggested. I really do feel I know more than the doctor on migraines, and we all know our bodies better than they do. Too bad they are the ones making the money and we cam barely afford the medications.

wow thats sad that you you feel your dr doesnt know as much as you do about migraines, i do sympathise with you over in the states as it seems so hard to find a good dr that you get along with and understands you, especially without having to drive for hrs and spend loads of money. i feel very very grateful we only have a 30 min drive to see our cons neuro free of charge, and who is very much at the forefront of mig research. lifes tough for you.

Sorry Dawn, in my experience it isnt any better here.
I know you have found a good neuro, but I am in pretty much the same place as Linda.
My neuro is a two hour plus round trip, and so far he hasn't helped me one bit.
He even neglected to check if I had contra indications for one of the meds....and I do....
I havent gotten anything more from a neuro so far than I have from MA or my GP.
You are one of the lucky ones.

P

brent,

since you don't have really significant risk factors from a cardiac standpoint, supplemental T shouldn't be a problem--a good doc will keep an eye on things to watch for problems. androgel does work--and it's great for rebuilding muscles. it helped a lot for the statin meds that damaged mine.

i'm worried about how my body will repair after surgery. i need to get definitely my right shoulder fixed, and probably left.

whatever we face, keeping a good eye on what's going in medicine and working with docs (and not being scared to fire them) is part of being the "new" proactive patient. some docs and others in the med. profession might not like it--but many of us are battling for some sense of a normal life.

yes pen but you have managed to see 2 of te best drs 4 mig in the past and we dont have to pay, except for the london clinic neither do we have the probs wth getting insurances to pay for drugs that the usa people do we do have a lot of blessings pen!

Two of the best? Really, I didnt know that. And that is the case then there is little hope for those that see the lesser ones Dawn.
To be honest, it does seem that once you are a difficult case (chronic) it doesnt really matter who you see.

I know you really get something from yours Dawn, and that's great.
It's a pity we all cant see him I guess.
But dont ever run away with the idea that we dont pay. We pay all our working lives, and still spend a fortune more on all the complimentary things because the NHS stuff is either too slow, or insufficient...
Just like people in other countries really. Just a different system.


My GP supports me and prescribes my apparently huge amount of Triptans.
She did warn me when I asked to see a neuro that we would just be going over the same ground again, and probably not see any change. Sadly, she was right......and apparently I saw two of the best!!! Hmm

Pen
With apologies if this is at all snippy. Have had a dreadful week and it aint over yet...

Dawn - I think you misunderstood me. For one thing, my neuro is only 5 minutes away and I can get in the same day if need be. I have excellent insurance and do not have any out of pocket expenses as you indicated. We pay through the nose in insurance though (just like you). Unless you are on welfare, you are paying whether it is through taxes, insurance premiums, etc. no matter where you live. And my neuro is an excellent doctor, as good as any other. My point is that none of them know a heck of a lot about migraines or we wouldn't have this forum going. More and more is being done everyday though. Since we are all so different we have to do our own research. That way we have a head start before seeing our neuro.