A Confession... med. professionals please read

[Lisa Simpson]

[B

The hormones are added by the manufacturer? Since they have biological activity then they should be regulated and its therefore illegal to sell them without a licence. Do the FDA know about this? Please clarify. [/B]

It doesn't contain hormones--it may have an estrogenic effect.

http://ods.od.nih.gov/factsheets/BlackCohosh.asp

How black cohosh works is not known. The possibility that black cohosh exhibits estrogenic activity has been studied but the evidence is contradictory [10-18].

A compound recently identified in black cohosh-fukinolic acid-was shown to have estrogenic activity in vitro [10]. Other active compounds appear to include triterpene glycosides (including actein and cimicifugoside), resins (including cimicifugin), and caffeic and isoferulic acids [19].

 

[Nex]

The hormones are added by the manufacturer? Since they have biological activity then they should be regulated and its therefore illegal to sell them without a licence. Do the FDA know about this? Please clarify.

I don't know. All I do know is that they contain some type of chemical that acts as a hormone in humans. That's what I meant by "hormones." Sorry for the confusion.
Beyond that, I haven't a clue though.

Originally posted by skeptigirl
If we are going to be skeptical of claims made by supplement supporters here shouldn't we also not jump to the conclusions supplements cause things either?

Good point. Because I am only one person, it could have been some weird freak-of-nature occurance. And because we had to backtrack to find the cause of the tumors, and my memory's not exactly airtight, it could have been something I've forgotten. We don't know. I guess I should have said the only thing that could have caused the tumors that we know of is the pills.

Originally posted by skeptigirl
What was the cause of your abnormal cervix?

Errr.... PM me for that info, ok?

Originally posted by skeptigirl
Is it possible what ever caused that was also a potential tumor generator in other locations?

I doubt it, but I'm not a doctor. I think my doc would have warned me if it were... I hope.

Originally posted by skeptigirl
Do you have any genetic predisposition to tumors?

No. I am, as far as we know, the only person in both my maternal and paternal families to have had tumors.

Originally posted by skeptigirl
What did the pathology report show after your liver surgery?

I haven't the foggiest. If they told me anything about it, I was too doped up at that point to remember or care.

If you want, I can call the medical center and see if they can mail me a copy of the results.

Originally posted by skeptigirl
Was the report consistent with a supplement or toxin generated tumor?

Unknown.

Originally posted by skeptigirl
Do other people have these tumors without taking the supplements?

There was some discussion that birth control pills can cause liver tumors, but the chances are very very low. My surgeon had mentioned that at one point before surgery.

Originally posted by skeptigirl
You just can't be certain without a lot more data.

Very true.

 

[Nex]

I was just thinking... there is also the possibility that it wasn't any one of those herbs (saw palmetto, black cohosh, fenugreek), but the combination that did it.

 

[Badly Shaved Monkey]

Hopefully without being labelled an insensitive pedant, I'd like to reiterate what skeptigirl said, inasmuch as we would like to blame the supplements for your disease we don't actually have the evidence and the point of scepticism is that it applies equally and fairly to all claims whether it's the woo claiming to cure someone or a patient wanting to lump blame onto one identifiable factor. Cancer is mostly multifactorial and it is hard, even in principle, to blame a single cause. If single causes could be found easily we could stop a lot more cancer by attacking those causes.

I hope you get better and stay well.

 

[Nex]

I found some of the info. I had looked up back when I was still in recovery:

Saw Palmetto

Black Cohosh

Fenugreek

You will notice that none of these are recommended by medical professionals for women trying to conceive. Imagine my dismay on reading that.

 

[Nex]

Hopefully without being labelled an insensitive pedant, I'd like to reiterate what skeptigirl said, inasmuch as we would like to blame the supplements for your disease we don't actually have the evidence and the point of scepticism is that it applies equally and fairly to all claims whether it's the woo claiming to cure someone or a patient wanting to lump blame onto one identifiable factor. Cancer is mostly multifactorial and it is hard, even in principle, to blame a single cause. If single causes could be found easily we could stop a lot more cancer by attacking those causes.

I hope you get better and stay well.

Thank you. I don't consider it insensitive in the least, actually.

Just as an aside, it was not cancer. The tumors were benign adnomas. Big honkin' benign adnomas, but benign nonetheless, thank the sweet IPU.

And I fully agree, it is not very simple to pinpoint any single cause of tumorous growths. My fear is that one of these herbs, or the combination of them, is a cause however. It is something to watch out for.

 

[pgwenthold]

Thank you. I don't consider it insensitive in the least, actually.

Just as an aside, it was not cancer. The tumors were benign adnomas. Big honkin' benign adnomas, but benign nonetheless, thank the sweet IPU.

And I fully agree, it is not very simple to pinpoint any single cause of tumorous growths. My fear is that one of these herbs, or the combination of them, is a cause however. It is something to watch out for.

You know the part about this that is bothering me? It is the concept that it would be very difficult for you to make a case and take legal action. There are plenty of examples where drug companies and whatnot have been sued even when there is demonstratably no indication that the things are harmful (see breast implants), but here is a case where we are really pretty ignorant on the deal and no one wants your case.

I wonder, if it was big pharma or some evil chemical company on the other side, would the lawyers still be so hesitant? Where is Erin Brockavitch?

 

[Nex]

pgwenthold--

I see your point. It is frustrating. The sad thing is, in total honesty, even if there was a glimmer of a chance I doubt I'd sue.

Hear me out... I'm trying to get into an ADN/RN program. I work hard and for long hours to keep my grades as high as they can be. Once I get in, get through, and graduate I will be going on for my BSN at a neighboring university.

I can't jeopardize that. I can do more as a registered nurse than as a plaintiff, and considering how damnably shaky this one would be even if I did have the name of the company (which I don't), I can't afford that risk. I can't afford it, finacially or emotionally. My education is more important than a gamble on poor odds. We can see by the questions raised already that maybe it's not definite, maybe it was something else that I don't recall. That maybe is more than enough to get them off the hook.

The only way I would pursue this legally is if it did not detract from my education. That, I'm afraid, is nearly impossible.

I am confident, however, that the research being done now will show where the risks and benefits of herbal supplements truly lie.

On a sidenote, does anyone know how to get legistature in the works to regulate this stuff? Is there any already written? How do we go about getting the necessary laws passed?

 

[Skeptic Ginger]

From your description of multiple tumors I found this related article.
http://www.ncbi.nlm.nih.gov/entrez/...eve&db=PubMed&list_uids=2412930&dopt=Abstract

Liver adenomatosis. An entity distinct from liver adenoma?

From 1979 to 1984, we followed the cases of 3 men (aged 13, 31, and 75 yr) and 2 women (aged 38 and 45 yr who had never used oral contraceptives) suffering from liver adenomatosis, an uncommon lesion consisting of numerous benign adenomas in an otherwise normal hepatic parenchyma. During the same period, we observed 20 cases of liver adenoma (one tumor in 18 patients and two tumors in 2 patients). From these cases and the review of previously reported cases of liver adenomatosis and series of liver adenoma, the following distinctive characteristics of these two benign conditions of the liver can be outlined: liver adenomatosis affects men and women, whereas liver adenoma predominantly affects women; liver adenomatosis is unrelated, whereas liver adenoma is closely related, to oral contraceptive use; increases in serum alkaline phosphatase and gamma-glutamyl transpeptidase are common in liver adenomatosis, but are uncommon in liver adenoma.

IE, If I am making the correct assumptions, your condition was not the same as adenomas associated with BC pills.

Which then led me to this article. Working backwards, they found a high rate of liver adenomatosis in certain diabetics with a particular genetic mutation. IE, your condition may have been genetic. And from the sound of this research, you should share this with your doctor who may want to follow you for adult onset diabetes. Do NOT worry about diabetes unless you get it. This kind of information should only lead us to monitor for conditions, not stress about getting them.

http://jcem.endojournals.org/cgi/content/abstract/89/3/1476

We show the occurrence of liver adenomatosis in six MODY3-affected patients from two unrelated and large families. Liver adenomatosis was characterized by the presence of numerous adenomas within a normal hepatic parenchyma. The HNF-1{alpha} hot-spot germline mutation P291fs was identified in the two probands and in 16 relatives from the two families. The six patients affected by liver adenomatosis and diabetes exhibited the mutation. The analysis of liver-cell tumors from two affected patients evidenced the biallelic inactivation of HNF-1{alpha}. The familial screening confirmed the clinical heterogeneity of the liver phenotype, from silent liver adenomatosis to fatal hemorrhage. These observations warrant the systematic screening for liver adenomatosis in MODY3 families to prevent its potentially deadly complications. Moreover, such screening may help to determine if a particular mutational spectrum of HNF-1{alpha} is associated with liver adenomatosis and to establish its prevalence in this frequent form of diabetes in the young adult.

As to why you might have a genetic condition no other family members have, there are several instances where that can occur. One is if you needed to inherit a gene with the abnormality from each parent and no other relatives had two genes (your siblings male and female might benefit from liver evaluations as well), or, as was the case in my family you may just be the first person with the mutation.

My Mom has the gene for spherocytosis, a genetic blood disorder. But it is caused by a dominant gene and neither of her parents nor any of her three brothers has it. She had to be the first. My two brothers inherited it but I fortunately didn't.

 

[Eos of the Eons]

I actually found more studies on the black cohosh as well.

Stanley M. Cohen, MD, assistant professor of medicine at the University of Chicago, tells WebMD that he and colleagues have diagnosed what they believe is the first case of autoimmune hepatitis caused by the use of black cohosh.

http://my.webmd.com/content/Article/75/89785.htm?printing=true


I guess that's not the same as what Nex experienced though? That type of "hepatitis?

There are warnings for Black Cohosh since it does act as a hormone, you just won't find them on the bottle.

Chemicals in black cohosh may act like estrogen in the body. When it is taken at the same time as estrogen replacement therapy or oral contraceptives, black cohosh may interfere with the way the body uses the estrogen. As a result, estrogens or oral contraceptives may not be as effective, some women may experience increased side effects, and the risk of anunintended pregnancy may be slightly higher.

http://www.drugdigest.org/DD/PrintablePages/herbMonograph/0,11475,4079,00.html

And to note "weight gain" is listed as side effect.

I would hardly classify the stuff as just "food", and it's not taken for dietary reasons. They listed side effects even.

There is that distinction to go on? A food supplement should be like a vitamin, not something intended to "treat" menopause. These things ought to be treated as drugs and be regulated, tested, and contain warnings about the noted side effects.

 

[Mojo]

My Mom has the gene for spherocytosis, a genetic blood disorder. But it is caused by a dominant gene and neither of her parents nor any of her three brothers has it.

Do you mean dominant or recessive? Because if it's dominant one of your mum's parents would have had to have had it (the condition, that is, not just the gene).

 

[cesium]

it would probably be a recessive gene if it was not expressed in the parents or siblings


unless the genes are codominant or partialy dominant


or it is a polygenetic trait, or there is...

 

[Nex]

[...] If I am making the correct assumptions, your condition was not the same as adenomas associated with BC pills.

Correct.

Which then led me to this article. Working backwards, they found a high rate of liver adenomatosis in certain diabetics with a particular genetic mutation. IE, your condition may have been genetic. And from the sound of this research, you should share this with your doctor who may want to follow you for adult onset diabetes. Do NOT worry about diabetes unless you get it. This kind of information should only lead us to monitor for conditions, not stress about getting them.

Thanks for the heads-up. I'll let my doc know about this. There are two family members on my mother's side w/ diabetes, actually.

Thank you. I mean that.

**edited to add**

Could it be a combination of these things? Or that my doctors were not aware of what you have brought to light here?

I wish I could give more information myself, reading back through, this has become a confusing thread! Well, to me at least.

I'm guessing that my doctors went with their best educated guess. Is that how it works in situations like these, with no real solid answer?

 

[Skeptic Ginger]

Do you mean dominant or recessive? Because if it's dominant one of your mum's parents would have had to have had it (the condition, that is, not just the gene).

Did you read my post? My mother had to have been the source of the mutation. It is a dominant gene, I assure you but you can also check the literature.

My mother suffered from an undiagnosed anemia until she was pregnant with my younger brother. She had received needless B12 shots throughout her life until then. When my older brother was 3 and also suffering from anemia the diagnosis was finally made.

Interestingly it only took a look at red blood cells under low magnification to see they were not shaped properly. I made smears for my high school science class, (show and tell. ) I guess doctors didn't know to look at the blood themselves or something. I also have no idea why any lab person didn't notice but I have to assume it was the state of medical science in the 50s and earlier.

They now have had splenectomies and all is well short of a few other medical problems related to the splenectomies.

As I said, neither of my Mom's parents nor her 3 brothers have anemia nor spherocytosis. And I cannot imagine my grandmother having an affair. It just wasn't common in her day and she was a very traditional southern girl. Besides, my Mom looks more like her Dad than her Mom.

You know, even for a dominant gene mutation, someone had to be the first.

 

[Skeptic Ginger]

Correct.



Thanks for the heads-up. I'll let my doc know about this. There are two family members on my mother's side w/ diabetes, actually.

Thank you. I mean that.

**edited to add**

Could it be a combination of these things? Or that my doctors were not aware of what you have brought to light here?

I wish I could give more information myself, reading back through, this has become a confusing thread! Well, to me at least.

I'm guessing that my doctors went with their best educated guess. Is that how it works in situations like these, with no real solid answer?

You are most welcome. It appears to be very recent research, 2004. The family members with diabetes may also benefit from a liver exam according to the article. If the adenomas are not detected they can result in severe bleeding and even sudden death. I suggest you make copies of the abstract and pass them out. Your doctor will be able to find out just what medical monitoring you need and/or if the genetic link even applies to your specific condition. There are often multiple causes for these things and this particular genetic cause may represent a small or a large percentage of all cases of adenomatosis.

I'd love to hear back from you what happens.

 

[Nex]

You are most welcome. It appears to be very recent research, 2004. The family members with diabetes may also benefit from a liver exam according to the article. If the adenomas are not detected they can result in severe bleeding and even sudden death. I suggest you make copies of the abstract and pass them out. Your doctor will be able to find out just what medical monitoring you need and/or if the genetic link even applies to your specific condition. There are often multiple causes for these things and this particular genetic cause may represent a small or a large percentage of all cases of adenomatosis.

I'd love to hear back from you what happens.

Again, I appreciate your bringing this to my attention. The link to the abstract has been emailed to my family along with a note why I sent it.

I also have it printed out and will bring it with me for my next exam.

Thank you very much, that helps clear up quite a few questions of my own about what happened.

 

[Eos of the Eons]

Consumer complaints wanted regarding healthfraud/product claims

http://abcnews.go.com/GMA/story?id=151501&page=1