When Dr.'s don't agree - Advice Please..

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And I have generalized epilepsy been on over 12 meds and getting ready in a few months for second surgery.but I was jus curious which dr. cause nuero shouldnt give u advice on that just a referral
 
acpollard do you mind if I ask what the upcoming surgery is? When you say second I'm guessing by first you're referring to your vns? I don't remember you saying anything thus far about going in for another (HUGS). If you don't mind saying what it is that would be great - the more I hear about surgeries the better, need all the info I can get. Thanks!
 
I go see my neurologists in a few hrs have more details then he wants to do a lil furthur testing due to the amount of concussions I have had and wants to talk about replacing battery on vns or removing it entirely with this new surgery I havent seen him yet took him my records he called me a few wks later with all of this so a lil nervous goin into today
 
Well you know we're all here for you when you get back from your appt. I know even talking about surgery is hard I can hardly do it without the tears pouring, and if a time comes that you want to vent, cry, whatever, just log on and see us.
BIG HUGS today and may it go as good as can be expected!!!!
 
qtowngirl said:
load up on the calcium...calicum is a smart thing when on AED's, and if Dilantin worked, well, sounds like the simplest solution.
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Yeah, I already take calcium and I've seen some improvement (very slight) in some areas and some worsening in others since my first bone scan a few years ago.
 
P-Funk said:
Do you think your Neuro has any incentive to promote this Testosterone Treatment? I’m still surprised he just doesn’t have you back on the dilantin with a calcium supplement, since you were doing so well.
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It was actually a doctor called a nuero-endocrinologist that recommended the testosterone therapy (supposed to be both a neuro and an endo) because he said the symptoms I described were similar to secondary hypogonadism. I told him that since I didn't have these issues while on Dilantin, couldn't we try to just go back to that and see if the symptoms reversed themselves? He still wanted to push the testosterone approach for some reason..

My regular neuro is okay with me just going back to Dilantin, but as I mentioned earlier he flat out admits that he is only a neurologist and doesn't know much about how the drugs affect other areas such as hormones.

I'm leaning toward the Dilantin, just because I'm worn out with doctors and that approach seems more logical to me and simpler and less taxing on my body.
 
I know it's wordy, but...

Previously unrecognised temporal lobe epilepsy (TLE) was diagnosed in 11 of 16 hyposexual men. 6 had neuroendocrine abnormalities (hypogonadism in 4 and hyperprolactinaemia in 2). 4 men with hypogonadism and TLE had persistently subnormal serum testosterone, with a blunted luteinising hormone (LH) response to luteinising hormone releasing hormone (LHRH) in 2 and, in these men, unlike those with isolated hypogonadism, there was no improvement in libido or potency when parenteral testosterone was given. Men with TLE and hyperprolactinaemia had normal serum testosterone and an enhanced serum LH response after LHRH, but effective doses of the dopaminergic agonists, bromocriptine or pergolide, did not produce sustained normoprolactinaemia. In the men with neuroendocrine dysfunction and TLE the most effective therapeutic sequence was first to treat the epilepsy with anticonvulsants and then to add appropriate neuroendocrine therapy. In 2 men hormone levels became normal and sexual function was restored on anticonvulsant therapy alone.
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-from the lancet.com

And you said your testosterone levels were very high? I'm not a guy but am very wary of what they try to do with me, so if it was me I'd be asking WTF? One thing at a time!!
Sounds like the combination of two specialists' opinion, rather than one person who is trying to be two people, is the safest way to go, IMO. Once the reproductive system is F'd with there is usually no going back.
 
That was very helpful. I think I'm just going to go back to Dilantin. Indeed, my total serum testosterone is often over 700 which is considered high (ref range 250 to 1000. Add that to the fact I never experience sexual issues until I came OFF of Dilantin and that makes the case even more convincing.

I will say that the doc advocating the hormone therapy keeps noting that its not total serum testosterone that is important, but rather bioavailable testosterone, which although I am considered normal, I do fall in the lower end of that reference range sometimes.

The only caveat I would add is that your article recommends treating the epilepsy first then add the appropriate neuroendocrine therapy. Well, it doesn't seem to matter epilepsy-wise if I take Keppra or Dilantin as my seizures are generally well controlled either way. So, in a sense they actually are treating the epilepsy first, as your article suggested. The question just becomes, do I really need the extra neuroendocrine therapy or not?
 
Yes I noticed that too, and that's why I bolded the last sentence - 2 of the men didn't need to seek anything past their AED's, which would tell me that the AED they were put on was one that didn't interfere with their testosterone levels, sex drive, etc.
My hope after finding the article is that you can be like one of those 2!! And from what you've said Dilantin sounds like the answer for you in that regard, whereas with staying on keppra you may not get lucky like those 2. I guess the only way to know for sure is go solely on dilantin and then have your levels tested again in say, six months or something, for a better idea of where you're headed. Hopefully it's all good and you're feeling like 'you' again! :rock:
 
Qtown- you wouldn't have a link to that article you referenced would you? I went to the website but didn't find the one with that specific section you quoted.

Thanks for all your good advice...
 
Hey guys,

I went to visit a NEW neuro late last week and wanted to share his thoughts on all of this. When I brought up my story about not feeling the sex effects till AFTER ending Dilantin, he theorized that perhaps since Dilantin binds so well with proteins that it was actually increasing my Free Testosterone levels and that I was feeling that benefit despite Dilantin's known ability to increase SHBG (which normally lowers Free Testosterone levels).

I had never heard that one before and wanted to hear what you guys thought about it. Also, it made me wonder if Dilantin will bind to proteins like Albumin (and theoretically increase Free Testosterone as a result), does it also bind to SHBG too?? If it did, that would explain a little bit, but I've not been able to find anything online about Dilantin binding to SHBG.

Also, no other docs (endocrinologists or neuro) has ever given me that theory before..

Thoughts?
 
The neurologist's theory sounds a little sketchy... Were free testosterone levels (and/or a free androgen index) measured consistently before and after ending Dilantin? Without several sets of numbers to evaluate, it might be tricky to do a full analysis of what was causing what. Have you seen an endocrinologist? They might be able to shed some light on the issue.

Albumin is the major binding protein for Dilantin. I don't think it binds to SHBG -- though even if it does, SHBG levels are affected by many factors (glucose decreases SHBG production; the liver's production of fats increases it), so pointing the finger at Dilantin alone may be tricky.

Unfortunately, the effects of Dilantin on male sex hormones haven't been extensively studied (Despite the fact that Dilantin's been around forever!). The lab studies are done on rats, so it can be difficult to know how transferable the results are. Based what data exists, it does seem likely that Dilantin potentially inhibits testosterone production (and also reduces male fertility). Aside from any med effects, temporal lobe epilepsy in particular seems to result in lowered testosterone levels more than other kinds of epilepsy (due hippocampus-related TLE effects).

So there may be many factors -- too many to narrow down -- related to your paradoxical reaction to the Dilantin in terms sex effects. Dilantin's side effects tend to be dose-dependent, so if you were to switch back to it, it would be worth ramping up very slowly in order to identify the lowest possible dose that would provide seizure control.
 
Nak,

Just to be clear.. the new neuro didn't claim that Dilantin binds to SHBG, only that it is a strong protein binder. Though, he did say that perhaps that was part of the issue with why sexual issues didn't appear till ending Dilantin.. Either that, or it is a problem with the Keppra. He basically is recommending to go back to Dilantin.

My endocrinologist says my hormone numbers are all normal, although my free testosterone is in the lower end of normal. My total testosterone has always been on the higher end of normal (high enough that he says that my number is what he shoots for when he has other patients on testosterone therapy), so he is reluctant to recommend any kind of testosterone therapy for me. Unfortunately, no one bothered to do detailed Free testosterone numbers prior to ending Dilantin, since I never complained of sexual issues. However, my total testosterone was tested a few times while I took the Dilantin and that number was very high, sometimes higher than the normal reference range. Today, toal testosterone numbers are still on the high end of the refernce range, but not as high as when I took Dilantin..

I did a phone consult with a "nuero-endocrinologist" out of New York who said I should take testosterone shots to boost my free testosterone and take arimidex to control any estradiol issues, all while continuing with keppra. But, to me that just sounds like more drugs (and therefore side effects to deal with) that I am not interested in going through.

Also, the local endocrinologist and local neuro do not agree, he says just go back to dilantin (since I felt fine when I took that back in the day) and that my hormone numbers are good enough. (they both smirked as if it was dumb to consider testosterone shots given how high my total testosterone numbers already are)

Again, until ending Dilantin and going alone on Neurontin (and now Keppra alone) I had no sexual issues regardless of TLE or Dilantin, so all of this is very confusing. I certainly don't want to make it worse by going back to Dilantin, but I want to have a full life again..
 
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I understand your dilemma. When you try a medication, there's a lot of trial-and-error and unpredictability, and unfortunately there's no real way around that. I suggest that if you feel motivated to try the Dilantin, go ahead and do so -- but go slowly, and closely monitor how you are feeling as you ramp up to a stable dose. The testosterone shots may be unnecessary, so no need to make a decision about that right now.
 
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