Idiopathic Small Fiber PN and Estrogen

[Kathi49]

I was just wondering if there has ever been a correlation done to determine if low hormone levels can cause idiopathic small fiber PN. The reason I ask is that because I am on HRT. And when I go to change the patch and put on a new one, I notice a considerable decrease in burning. I am also wondering if a deficiency in any hormone could cause this. I have read just a few things about it but nothing in detail. Thanks!

[dahlek]

that I've a BC, and a PN/CIDP.....Since on the AI, I've asked, looked and not got an answer as to where all those stray frustrated estrogens GO!
Based on the s/e's of the AI's, well, the issue is not addresed, and if the s/e's are due to these loose, rampant estrogens, well, Um - Folks Why don't ya know? When I went on My AI, believe me, I had more than 60% of the s/e's listed, some with a vengeance! I was not a happy camper.
Not one doc has posed any interest in testing or researching further than the actual question....the combo s/e's of the meds are scary as well.

We just go on....plain old going on?

Only site I found useful was www.breastcancer.org but, most there don't have the 'issues' we have that make things ever stranger?

Hope this helps! - j

[Kathi49]

j,

Thanks but I am not sure what you are saying. I think my pain meds are getting to me LOL! I have had a total hysterectomy (years ago), so my estrogens went kaput when the ovaries went LOL! Sure, the stray estrogens (my own) cycled for awhile until they ran out. But I was also on HRT immediately after the surgery. I just wish doctors out there would do more investigating into this. When I asked my Neurologist about it, she herself, had not done any research. But it is amazing when once one has had this kind of surgery how many aches and pains we get all of a sudden. Sometimes I think my Idiopathic Small Fiber PN may be in SOME WAY associated with any hormonal deficiency.

Also, somewhere I read that Kenalog (I get spinal steroid injections from time to time), has a neurotoxin in it. How true this is I do not know. But that is another thought I have.

Thanks again!

[dahlek]

I can think of are to read your meds [all of them] and see if PN is mentioned in the common and unusual s/e's. Once you are on more than one med that could cause a s/e, each extra med can well, mix up things for the worse at times. I'd then call the med manufacturers and ask them if they've any research relating to the issue. There is a good deal of info that they have that they don't tell you about unless you ask. They may even know of some new research in this area - worth a shot!

I mean, wouldn't it be sort of wonderful if estrogen were a key to relieving some PN pains? Let us know if you get lucky! - j

[southerngirl]

I don't have PN my sister does but I had a hysterectomy many yrs ago also and I do believe that hormones can effect many parts of your body and who knows what kind of illnesses can come out of it. I have to take them also even with all this bad publicity about them I am very sick without them. My md does say that you can get very ill when your hormones are depleted so you could be on the right path as far as them helping you with your pn, so I hope you find some more info on it I would be interested to find out myself if its true.
Catherine

[Kathi49]

Catherine,

I see my reproductive endocrinologist this month for my annual exam. I am going to ask her once again about this. I know about a year ago she tested my estrogen level and it was something like a 10! It should have been about 15-20 points higher than that if I remember right. Anyway, I also have spinal issues so a large part of this could be radiculopathy. All I know for sure is that when I go to change the patch (Vivelle dot), the very next day my pain and PN lessens. I don't want to go with compounded hormones simply because I have tried them and they do not work for me. Plus, my doctor is against them for all kinds of reasons i.e., not FDA approved, not readily absorbed through the skin and on and on. But she did let me try them through another doctor. And she was right...I was a mess while trying them LOL!

Oh, and don't worry about all the hype about taking hormones. :) I know you are referring to the Women's Health Initiative and it was a bunch of bunk. My doctor printed off the whole thing and explained how that study was done. I can't go into all of it here but one instance is that the "patches" were not even a part of the study. It was also only the oral tablets that were addressed in a random group at that. There all kinds of instances like that throughout the study and in actuality you are worse off if you DON'T take them. And I am only referring to people, say, my age, who are still fairly young. If I were in my 60's I probably wouldn't take ERT/HRT at all.

Okay, enough of me LOL! But I will talk to her about this. I DO take practically the lowest dose possible. But it could be I need to "up" it or try another transdermal route like Estrasorb or Estrogel. I will let you know what she says after the 9th of January.