Thoughts on my Neurologist's reasoning..

[Dignan]

I saw my neuro today and asked him yet again if he could do precautionary blood tests to establish baselines of different body systems before switching drugs.

(I have seen an endo after switching from Dilantin to Neurontin and to Keppra in the past, and after having multiple issues, he asked questions about my levels before my problems, but of course none of the below tests had ever been done to determine my levels back when I felt fine)

I asked for complete hormone profile, incl. Testosterone, Bioavailable Test, LH, FSH, Prolactin, Estradiol, Full Thyroid: including TSH, T4, and Free T3, DHT, DHEAs, and Cortisol, and Vitamin B, Vitamin D, and Folate. I don't expect these to be done all the time, but every few years to keep an eye on things..

The neuro said yet again, I should see an endo for this stuff (even though the endo says the neuro should do it, since he prescribed the drugs). The neuro even said if my endo won't do it I should fine another one who will. Makes we want to clank their heads together like the 3 stooges..

He also said as a neuro, he couldn't do it because he wasn't "certified" to do it, meaning the insurance companies might question it, and if something came back abnormal, he wouldn't know how to treat it anyway. My problem with his reasoning is that if doesn't know any of this other stuff, then how does he know what AED problems to look out for, and will we only find a potential long term issue after it has already gone sideways.. Also, that seems to leave me alone figuring out what baseline tests to do, and then trying to explain to other docs and convince them to do them for me..

Some people I speak with seem to think the neuro is right, while others think the endo is right and I should find a new neuro.

What do the people of this site think? All I know is, I wish someone had done these tests prior to my ever switching drugs the first time, so that when I started feeling wrong, at least we could compare my results from back when I felt good.

Any thoughts are appreciated!

 

[MaeDae]

I would do what is best for me. SO, if you think your dr isnt good enough or concerned enough, follow your own instincts, we know ourselves better than anyone else. All of your bloodwork probably will be fine, but I understand wanting to avoid issues that can and should be avoided. My neuro told me that periodically he will do blood work to check liver due to the divalprolex. Im satisfied with that and my primary dr does blood work every 6 months. My vitamin d stay pretty low. Hope it works in your favor no matter what you decide. Best of the best wishes to you.

 

[Nakamova]

He also said as a neurologist, he couldn't do it because he wasn't "certified" to do it, meaning the insurance companies might question it, and if something came back abnormal, he wouldn't know how to treat it anyway.

Unfortunately I think it reflects a flaw in our healthcare and health insurance systems. there is so much specialization, and no incentive for collaboration between docs.

When I switched off of Dilantin, my neurologist said I should have a bone density test done to look for any issues there. But the neurologist couldn't do it, she said my regular doc needed to order it. My regular doc wouldn't do the test, saying that:
1. Bone density tests are actually not particularly accurate -- they've been overhyped by the companies with a financial interest in them.
2. Even if they suggest there's a bone density problem, there hasn't necessarily been a correlation show to fracture risk.
3. If a density issue appeared on test, it wouldn't change anything anyway, since I was to young for prescription bone-density meds like Fosomax.
4. And Fosomax and similar meds have now been shown that they are problematic over the long term and can even cause fractures: http://www.pbs.org/newshour/bb/health/jan-june12/bonedensity_05-10.html

I checked with my sister-in-law, who is also a general practitioner, and she agreed with my regular doc. So in this case, it was very true that my neurologist wasn't aware of the points my doc made, and it was just as well that I didn't have the test done.

 

[Dignan]

While all that is true, it is just disheartening and reflects how much of total gamble it is taking these drugs, since the people prescribing them (and any other doc for that matter) has no idea what all can go wrong nor will they know what to do once something does go wrong.

So, as patients we are left alone to deal with all of this, and then put up with docs not always believing us when we do present an unusual (based on their knowledge) side effect..

Of course this is always learned by the patient over time, because in the beginning, when the doc is prescribing the drugs, he makes an effort to sound like the lord of all knowledge and almost is offended if he is questioned. Those new to the dealing with docs often learn how little control they really have or how little knowledge they have the hard way since as kids we are trained to trust our docs and obey their orders.

It just makes me tired to have to argue with different docs to get blood tests, because they don't see the need. i saw one today, and it was me getting mad and lecturing him to show him how little he knew of these other areas and my detailed research and logic that finally got him off high center and talking to me like I'm not an idiot who just needs a pat on the head.. At the end, he said, "Well, you're clearly a man who likes to get answers.." Duh!! I hate that it has to constantly come to that to get action.

I'm the one paying for it, so just do the test. Even if it doesn't do anything except establish a baseline for a point in time, it is information that can be used later if something changes. Ugh.

 

[Cint]

So, as patients we are left alone to deal with all of this, and then put up with docs not always believing us when we do present an unusual (based on their knowledge) side effect..

Unfortunately, this is how it is. I have a neuro and an endocrinologist because I have thyroid issues and type 1 diabetes along with E. But do they communicate? Nope. So that is why I go to the same hospital where they both practice and they are on the same computer system. So if they need to look up meds, tests, all my medical problems, they can look it up on the hospital's site. Plus I also see an internal medicine dr. just for other issues, just in case I need an anti-biotic for strep or something. She is in with the same medical complex.
And at times, I do have to tell them what I will and will not participate in.

 

[DayDreamer]

I think I would try to talk to my GP and talk to the others doctors nurses over the phone. You could have a request sent independently from the different doctors. If your endocrinologist won't test your tsh levels, something is wrong. The same could be said for your neurologist not testing your aed levels. Your could ask for the complete panel from your GP and get the test done all together, then go over the results with whomever you desire.

 

[Hand of Blood]

it I always my dr who does all my blood tests never the neuro!