A Confession... med. professionals please read

[Nex]

I'm putting this here in the science forum because it seems that the doctors and medical professionals come here most. I'm sure you all have heard something like this before, maybe, but bear with me.

This is why I became a skeptic, and why I hate sCAMs so damned much.

I just need to get this off my chest. Here I can be anonymous. I'm embarrassed. No matter how stupid you think I may have been, trust me, I've kicked myself over it enough already.

When I was 19, I had a surgery to remove a portion of my cervix. I had an abnormal PAP smear. They wanted to make sure I wouldn't get cancer. Between this, a tilted uterus, and some serious hormonal imbalances, my gynecologist and GP were both of the mind that my chances of conception were somewhat low.

Fast-forward to 2003. I got married to the most wonderful man in the world. We wanted children. With my condition, I wanted to make sure we could conceive.

We couldn't afford fertility treatments. Still can't, but it doesn't matter now anyway.

I started taking these herbal supplements for fertility. They contained a bunch of stuff, but I remember saw palmetto, black cohosh, fenugreek, and something else. I took them according to the directions, 3 pills a day. I took them for about six months, maybe eight, and then I stopped taking them because I was gaining weight and was feeling tired all the time. I didn't like how I felt so I knew they probably weren't doing much good. The weight gain and the tired, listless feelings came on slowly, which is why I took these herbal things for as long as I did.

I began having some soreness in my stomach not too long after I took these things. I kept hoping it was a sign of pregnancy, but the tests always came back negative. My doctor never knew I was taking these herbal supplements; I didn't think it was necessary to tell her, and she never asked.

Over the course of a year, the stomach pain went from soreness to a sharp pinching feeling. On May 31st of 2004, at 4:30 am, I was taken into the emergency room with severe stomach pain.

It took them 14 hours to find out what was wrong. My liver was riddled with tumors.

I was assigned a team of 4 doctors. A gastroenterologist, a gynecologist, a hepatologist, and an endocrinologist. They worked together to figure out why a 25 year old woman, in the prime of her life, had a swollen liver filled with tumors.

It was those goddamned pills.

I was sent to a huge teaching hospital on the East Coast of the USA for my surgery. It took 6 hours, and was performed by one of the US's leading liver transplant surgeons. He removed a bit less than half my liver, and my gall bladder as well.

I was in agony for 3 months afterwards. Nothing dulls pain like that. Nothing. All morphine did was make me sleep, and I can tell you, unconsciousness was the only blessing I had during those long lonely non-visiting hours.

That surgery was on the 3rd of June, 2004. It's been almost nine months. I still have pain sometimes, and I still have to sleep with a pillow on my stomach. My nerves are a mess. There are days where the pain from neuropathy is so bad I can't barely breathe, I can only sit slightly reclined and gasp like a fish out of water. I have a bandage on my navel that keeps anything from touching it, because if there's any touch or feeling there, it screams bloody murder.

I have a foot-long hooked scar that runs from my sternum around to my side, following the curve of my ribs. The ongoing joke is that you could stick your head in that hole, it's so big.

Those f***ing pills. Now I've got almost no chance of conception or carrying to term. I took them to help me, but they ruined it all. I consider myself the luckiest woman in the world that my husband doesn't mind. He says he's with me because he wants me, not because he wants a breeding cow. :)

So, if you have a patient taking this herbal stuff, saw palmetto, black cohosh, or fenugreek, tell them about me. Tell them what that stuff did to me.

That's why I'm posting this. I want the doctors and medical professionals here to see this.

Thanks.

[Eos of the Eons]

Omigosh Nex, my heart aches for you. Can the doctors prove it was the pills that did this to you? Can you take some action against the manufacturer?

These things need to be made public so other don't take the pills.

Did they say why the pills did that to you liver? What the heck was in them?

This is why people need to know that taking unregulated substances is a horrible idea. The claims that big pharma want them out of business merely because they are "competition" is a huge lie. It's doctors that have to clean up the mess these supplements make. If anything, big pharma is making money treating people harmed by supplements.

You're not the one at fault for taking those damn things Nex. It's the society's fault that allow these things to be sold. You stopped taking them once they were shown to hurt you, you didnt' lie to yourself and keep taking them after the surgery.

You're not stupid either, it's not like the bottles carried warnings. They don't need to. The people selling these things are stupid for allowing people to be hurt this way. They are the ones who lie about "big pharma" and how "safe" their products are.

I would only call you stupid if you were still taking them.

Kudos to your hubby for being a truly caring guy and not leaving you in the dust. You're definitely not stupid girl, you know how to pick em!

[Nex]

Originally posted by Eos of the Eons
Omigosh Nex, my heart aches for you.
Thanks. I'm OK though. I look at it this way -- I'd rather be hurtin' than dead.

Originally posted by Eos of the Eons
Can the doctors prove it was the pills that did this to you? Can you take some action against the manufacturer?
No. We've gone 'round that with my GP. She was kind enough to speak with her lawyer (medical law specialist) for us, and the lawyer said that trying to prove that they were the cause would be too difficult.

**edited to add**

Linking the tumors to the herbal stuff is easy, linking it to a specific company is not. There are hundreds, maybe thousands, of herbal fertility pills on the market, and I don't remember which one it was. At the time I didn't think it was important to commit it to memory. I didn't think there'd ever be a problem.

**edited a 2nd time to add**

Because there's no solid evidence yet that these types of pills cause tumors in an overwhelming amount of people, I doubt anything would come of it anyway.
My surgeon did say he's seen a rise in young women having liver tumors removed, but he was very adamant in saying that he doesn't have data to support a hypothesis like that yet. He did assure me that there is research being done in that very hospital, but results are years off.

So the law can't help me here. Hopefully it will be able to help someone else someday.

Originally posted by Eos of the Eons
These things need to be made public so other don't take the pills.
It'd be nice. Honestly, I'm scared to put forth the time and effort. I'm currently trying to maintain a 4.0 GPA in school so I can get into the medical university that saved my life. Only this time as a CRNA student. I don't want to take on anything extra. Maybe that's just a cop-out, I don't know.

Originally posted by Eos of the Eons
Did they say why the pills did that to you liver? What the heck was in them?
Saw palmetto and black cohosh both contain hormones but I don't remember what. Androgynes, I think. The fenugreek contains a different type of hormone. I wish I could remember all the stuff my doctors told me, but I don't -- by the time they had most of it figured out, I was already out of surgery and on LOTS of morphine. All I remember was that messing with your hormones like this can lead to these kinds of problems if you do it long enough.

Originally posted by Eos of the Eons
You're not the one at fault for taking those damn things Nex. It's the society's fault that allow these things to be sold. You stopped taking them once they were shown to hurt you, you didnt' lie to yourself and keep taking them after the surgery.
I know. Doesn't stop me from thinking I should have looked into it further before taking them.

Originally posted by Eos of the Eons
Kudos to your hubby for being a truly caring guy and not leaving you in the dust. You're definitely not stupid girl, you know how to pick em!
Thanks. I'll let him know. :)

[Lisa Simpson]

Black cohosh has been linked to liver problems.

http://www.mja.com.au/public/issues/177_08_211002/whi10119_fm.html

This talks about hepatitis.

[Hydrogen Cyanide]

You may want to report this to Quackwatch...
http://www.quackwatch.org/02ConsumerProtection/fraudreport.html

Good luck to you.

[Eos of the Eons]

Originally posted by Lisa Simpson
Black cohosh has been linked to liver problems.

http://www.mja.com.au/public/issues/177_08_211002/whi10119_fm.html

This talks about hepatitis.

Oh man. They are selling this Black Cohosh supplement in my local Superstore as an HRT for women undergoing menopause.

Nice big billboard to go along with it! Do you think that is what caused the majority of Nex's problems? If so, then there are a lot of people in my town that are going to get sick.can cause the body's immune system to launch an attack on the liver, doctors warn.
http://my.webmd.com/content/article/75/89785.htm
Oh great!

[Nex]

Originally posted by Hydrogen Cyanide
You may want to report this to Quackwatch...
http://www.quackwatch.org/02ConsumerProtection/fraudreport.html

Good luck to you.
Thanks. I think I'll do that.

[Dr. Imago]

Sorry to hear about your misfortune, Nex. Sharing your story can help others. I think your story also underscores the fact that people often don't believe herbs to be "medicine" and feel that they don't need to tell their doctor that they are taking it. Likewise, often many doctors don't know what these herbs are even if you do tell them. But, people should always mention everything they are taking, from prescriptions to over-the-counter pills to herbs or vitamins, when they see their doctor.

I hope you feel better. Don't give up complete hope of having children either. The liver has an amazing capacity to regenerate itself. And, despite the issues with your cervix, there is always the possiblity that you can still conceive.

Lastly, don't beat yourself up too much about having taken these pills. What's done is done. Now, just focus on getting better.

-TT

[Eos of the Eons]

Originally posted by Nex

I know. Doesn't stop me from thinking I should have looked into it further before taking them.



This gets me thinking. We are used to thinking things are regulated, tested already, and that any warning labels are required.

How do we help those that would welcome the information as you would have? You can't be a minority?

Thing is, as usual...anybody putting out information on supplements will be accused of working for "big pharma".

This is so frustrating!

Looking at all the variables, why would you think you would have had to look into things further? It's rather insanse that we even need to think that. The warnings should be on the labels and things should be tested for efficacy and safety beforehand. Sigh.

People have fought to change the double standards that supplements get, and they keep losing. Why?

[Lisa Simpson]

Originally posted by Eos of the Eons
Do you think that is what caused the majority of Nex's problems?

I have no idea. The only reason I know about black cohosh, is that my sister-in-law also tried herbs for fertility. It didn't work either, although she had no immediate side effects. However, later she found out that she's a DES daughter and she was afraid that some of the herbs she took might increase her chances of breast, ovarian or cervical cancer.

My s-i-l did manage to get pregnant without any medical help of any kind, just out of the blue. But she also had cervical problems and had to be on bed rest for 5 months of her pregnancy. My niece is 8 years old now. :)

[Dr. Imago]

Originally posted by Eos of the Eons
People have fought to change the double standards that supplements get, and they keep losing. Why?

Because these same people often do not realize that the supplement industry is a $20B/year market and has a huge lobbying interest in Washington. Kind of ironic that they point their fingers at Big Pharma as being an evil, greedy corporate interest ultimately uncaring of the people they claim to help.

:i:

-TT

[Dr. Imago]

Originally posted by Lisa Simpson
... later she found out that she's a DES daughter and she was afraid that some of the herbs she took might increase her chances of breast, ovarian or cervical cancer.

Off the top of my head, I only remember DES being associated with clear-cell carcinoma of the vagina. I'm not really sure (without further looking into it) how it plays into breast, ovarian, or cervical cancer or how it affects fertility. So, despite having a daughter, your sis-in-law should still continue to be monitored for this.

-TT

[TruthSeeker]

Nex,

Thank you for sharing this story. It is important for so many reasons.

Please ask your doctors about referral to a pain clinic or neurologist with a specialization in neuropathic pain. We have some helpful drugs (anti-convulsants like gabapentin) that might be able to help and also you could explore some cognitive pain coping strategies.

In the meantime, you might think about reading Managing Pain Before it Manages You (http://www.amazon.com/exec/obidos/tg/detail/-/1572307188/qid=1109550452/sr=8-1/ref=sr_8_xs_ap_i1_xgl14/103-7462884-0442244?v=glance&s=books&n=507846) . This is an empirically validated program from which many of my patients have obtained significant benefit.

Finally, please forgive yourself. You made a mistake. You survived and you have a full life ahead of you. Please don't waste a moment more bashing yourself for a completely understandable mistake.

TS

[Badger]

Originally posted by Eos of the Eons
This gets me thinking. We are used to thinking things are regulated, tested already, and that any warning labels are required.

How do we help those that would welcome the information as you would have? You can't be a minority?

Thing is, as usual...anybody putting out information on supplements will be accused of working for "big pharma".

This is so frustrating!

Looking at all the variables, why would you think you would have had to look into things further? It's rather insanse that we even need to think that. The warnings should be on the labels and things should be tested for efficacy and safety beforehand. Sigh.

People have fought to change the double standards that supplements get, and they keep losing. Why?

As I understand it, they can get away with it because herbal supplements, etc. are considered food items and therefore, not required to be regulated and tested in the same manner as drugs.

[Nex]

Wow. I didn't expect so many responses. Thanks to all of you. Forgive my laziness in not responding to every post.

Originally posted by Eos of the Eons
How do we help those that would welcome the information as you would have? You can't be a minority?
I don't know. If my doctor or someone I knew, like a friend or my mother, had told me it was dangerous I wouldn't have bothered with those pills, but if some anonymous stranger on a message board said something, I doubt I'd have listened.

I'm sure that many people taking black cohosh and other supplements are willing to listen if it comes from someone they trust.

Originally posted by Eos of the Eons
Looking at all the variables, why would you think you would have had to look into things further?
Hehe, well, hindsight's 20/20. I obviously didn't think I had to look much further than the label back when I bought them. Now I know better. I just wish everyone did.

Originally posted by Lisa Simpson
I have no idea. The only reason I know about black cohosh, is that my sister-in-law also tried herbs for fertility. [...]
I'm happy she's OK! I guess an eight-year-late congrats is in order? ;)

Originally posted by TruthSeeker
Nex,

Thank you for sharing this story. It is important for so many reasons.

[...]

Finally, please forgive yourself. You made a mistake. You survived and you have a full life ahead of you. Please don't waste a moment more bashing yourself for a completely understandable mistake.

TS
You're welcome. And thank you for the advice and book recommendation. :)

I know I just made a mistake, and I try not to kick myself. I figure just posting this here will help me feel better, because hopefully someone thinking about taking that stuff will see this and think twice.

[Suezoled]

Originally posted by Nex
I'm putting this here in the science forum because it seems that the doctors and medical professionals come here most. I'm sure you all have heard something like this before, maybe, but bear with me.

This is why I became a skeptic, and why I hate sCAMs so damned much.

(snipped)

That's why I'm posting this. I want the doctors and medical professionals here to see this.

Thanks.

I'll being taking some of these links into work that were put on after this post. I might only work for health insurance, but the more we know, especially those who are medical directors and nurse case managers, the better we can advise and create informational programs to our clients.

Nex: we don't talk much. But I just want to say I am so honored you chose to share this. Heck, this touches me with pride AND sadness, the second part for your personal problems, but the first because of your courage to speak about it at all.

Now, if anyone gives you a hard time about any of this, let me know. I'll send "cousing Vinnie" to say "hello" to them. ;)

[a_unique_person]

I don't know how it works there, but in Australia I am pretty sure that herbel remedies are regulated, too. That is, you can have them only if they are non-toxic, harmless things to make you feel better about a problem. A 'natural' pharmacy company in Australia recently was shut down because their standards of quality were so low that even a medication that was harmless in low doses was so badly manufactured that a batch went out that gave people massive overdoses of the active ingredient and nearly killed some people.

[davefoc]

AUP wrote:I don't know how it works there, but in Australia I am pretty sure that herbel remedies are regulated, too.

I don't know how it works in the US either but my impression is that the herbal/health food industry in the US has little regulation.

My own suspicion is that the health food/herbal remedy industry produces almost nothing of value in treating illness or advancing health. I haven't seen anything in their marketing that suggests their products are backed up by scientific testing. I occasionally listen to their pitches on radio. If even 10% of the pitch was true the touted remedy would be among the greatest medical breakthroughs of all time.

What regulation there is comes from manufacturers getting their asses sued off when a product causes enough damage that a nationwide class action nets millions for the lawyers bringing the suit. This produces a bit of a challenge for the health food/supplement industry. Most medicines that actually are effective also have side effects so that if one wishes to actually sell something that works one has to expose one self to the possibility of getting one's ass sued off by the people damaged by the side effects. So my guess is that manufacturers pretty much opt for safe remedies that actually aren't effective treatment for anything but also don't produce undesirable side effects.

[skeptigirl]

First a disclaimer, I'm on your side. I don't recommend any untested remedies. I try to be a very strict evidence based medicine practitioner.

But I have to say just because these supplements are unregulated and I'll have to look into that black cohosh liver tumor connection, doesn't mean you or we know those supps were the cause of the tumors? 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?

I try to remind patients if they are convinced a coincidental relationship implies cause and effect, they not only chase the wrong treatment, they could also be missing the opportunity to find and address the real cause.

What was the cause of your abnormal cervix? Is it possible what ever caused that was also a potential tumor generator in other locations? Do you have any genetic predisposition to tumors? What did the pathology report show after your liver surgery? Was the report consistent with a supplement or toxin generated tumor? Do other people have these tumors without taking the supplements? You just can't be certain without a lot more data.

I found this (http://www.breastcancer.org/research_alternative_cohosh.html) but that is only one source and no mention of liver tumors is made.

[Capsid]

Sorry to hear about this Nex, I wish you well for the future.

One thing you said that no one has addressed and concerns me:

Saw palmetto and black cohosh both contain hormones but I don't remember what. Androgynes, I think. The fenugreek contains a different type of hormone.

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.

[Lisa Simpson]

Originally posted by Capsid
[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]

Originally posted by Capsid
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 (http://www.uspharmacist.com/oldformat.asp?url=newlook/files/Alte/ACF2F98.cfm&pub_id=8&article_id=87)

Black Cohosh (http://www.uspharmacist.com/oldformat.asp?url=newlook/files/Alte/black.cfm&pub_id=8&article_id=416)

Fenugreek (http://www.drugdigest.org/DD/PrintablePages/herbMonograph/0,11475,552024,00.html)

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

[Nex]

Originally posted by 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.
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. :p

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]

Originally posted by Nex
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. :p

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?

[skeptigirl]

From your description of multiple tumors I found this related article.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?holding=npg&cmd=Retrieve&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]

Originally posted by skeptigirl
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]

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

Originally posted by skeptigirl
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?

[skeptigirl]

Originally posted by Mojo
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.

[skeptigirl]

Originally posted by Nex
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]

Originally posted by skeptigirl
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