Does anyone know about the increased risk of cardiovascular disease and FAP? (also related to the question I asked about colectomies/j-pouches, enterolactone and bifidobacterium). However, this is more specific because of the FAP risk of adrenal carcinoma (benign) that can cause the excessive production of both cortisol and aldosterone, which elevates blood pressure.
Ross
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I've never heard of any correlation.........never read anything that showed this either. I'd be curious to see what "proof" there is of this.
I guess my thinking is that it is pretty much a moot point. The FAP associated risk with adrenal tumors is quite low, since they are found incidentally in the general population. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3147036/
Plus, only a percentage of those have an associated heart disease. I think you are extrapolating too far. In addition, having normal lipids and blood pressure does not guarantee avoidance of coronary heart disease or other causes of heart attack (such as arterial spasm). Those are simply factors that can be controlled. You cannot control your genetic makeup. Sure, you may have FAP genes, but you may also have heart disease genes. Heart disease is very widespread in the general population.
You are better off dealing with your state as it presents rather than trying to figure out how you got there. But, I can understand your curiosity and desire to unravel the mystery. Just don't make yourself crazy about it.
Jan 
I agree with whoever said don't get too caught up in trying to figure all of this out. I think it could drive anyone nuts. I've had my pouch since 1987. Have had other problems - mainly scar tissue and endometriosis, which led to additional surgeries and very early hysterectomy/oophorectomy. Then had a blocked small bowel happen later. I go to dr. and so far BP/thyroid, etc. are ok, etc. - but who knows? I try to take things as they come and deal with them. If I get too involved in worrying about all the things that could go wrong, I'd got crazy. I've made it to age 52. I don't want to discourage people from getting information or say that I think there is anything wrong with doing so.
You are surely right about us being first generation to have the pouch young and then live out the results and see what else "gets us". I remember back in 1987 my surgeon telling me something else could get me later. No guarantees. It would be great (and maybe there is such a thing) if there was one place where the latest research dealing just with j pouch studies was presented in lingo for those of us who are not doctors. Maybe it's on this site - I haven't checked out all the pages yet. I'm new. That said, you have to be very critical of studies - they change so often and each person reacts to things differently. I think the older you get, the less you trust all the studies - but maybe that's just me! Hang in there, everyone. It's nice to be on here and talk with others who are dealing with the pouch!
An FYI: I've removed my responses because I just realized that they went well off course. The question is about a relationship between FAP and Cardiovascular Disease and not about anything else. However, if an FAPer is found with a tumor on their adrenal gland (which is most probably benign) and then has their blood tested high for cortisol or aldesterone, their risk of cardiovascular disease is greatly heightened. Granted, there are ways of directly addressing that risk and decreasing it...
Ross
Ross,
I've never seen any correlation between FAP and CVD. I'd sit and think about all the possibilities with FAP and any association with anything else, but, it'd drive me nuts. I've done tons of research and just haven't seen any correlation of the 2.
We have correlations to Desmoid Tumors, Thyroid issues, Pancreatic Issues, Liver issues and so on........but I've never seen any relationship with FAP and CVD, but, with FAP anything is possible, but, the true underlying reason might be genetic predisposition to CVD, I know from family history that I have a predisposition with heart issues, but, none of them had FAP (I'm the one and only in my family with this)............
Best Regards,
Charlie
Hi Charlie,
Well, actually there are correlations... http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2518080/
If you scroll down to the section of FAP And Adrenal Tumors you'll read this:
"...This is especially important since recent reports suggest that up to 20% of patients with adrenal incidentaloma (which means 1–3% of all FAP patients) have some form of subtle and subclinical hormonal dysfunction resulting in an increased risk of metabolic disorders and cardiovascular disease."
And then there is this publication by the American Cancer Society: http://www.cancer.org/acs/grou...ntent/003081-pdf.pdf
Although the general statistics say that FAPers are at a 1-3% risk for adrenocortical carcinoma, this book (click on the link):
claims that two large studies claim that the risk is between 7.4 and 13%... In my family, my younger sister fell into the "1-3%" who developed thyroid cancer. And my cousin and then my other cousin's daughter (a generation apart) fell into the "1-2%" who developed medulloblastoma (brain tumor); the 18-year-old daughter of my cousin was just stricken down a few days ago. So, for us, it is easy to worry about understatements of risks in the statistics.
And then there is this this from the Endocrine http://press.endocrine.org/doi...10.1210/er.2013-1029
"the relation of adrenal tumors with FAP led to the discovery of the role of β-catenin signaling in adrenal tumors."
I guess I'll leave you with this. I imagine they are sufficient amount of scientific studies connecting FAP with the possibility of adrenocortical carcinoma to bring up the question of the risk of the production of excess cortisol or aldesterone leading to hypertension, hence cardiovascular disease. So, the question to the community of FAPers is if anyone has stumbled across studies focussing almost exclusively upon FAP and cardiovascular disease.
The wonderful epidemial study "Vitamin D and Cholesterol; The importance of the sun" I'm currently reading by the British epidemiologist Dr. David Grimes asks/suggests that if Cardiovascular disease actually is an immunological question and that deficiencies of Vitamin D lead to decreased immunological function. I'm wondering just how much the genetics of FAP has to do with decreased immunology. If I'm correct, it is the immune system that is responsible for removing the mutated cells and for destroying cancerous cells (the roll of the "natural killer cells").
So why isn't our body capable of removing these cells? I know it may seem that I'm getting off track, although I'm certain that I'm not: But, I have not only a genetic tendency towards vitamin D deficiency (responsible for a strong immune system), a tendency towards a deficiency of glutathione (which is the #1 anti-oxidant liver detoxifier and protector against oxidation within the arteries) and I also have a deficiency of Immunoglobin M (IgM) that is not only responsible for responding towards the appearance of antigens but for removing the apoptized cells (cells that self-destructed upon sensing a mutation) and for removing oxidized LDL cholesterol from the body. The sadly interesting thing is that the cardiologists don't believe that this is within their realm of focus, although they are clear causes of cardiovascular disease, but from an immunologic origen. The issue with FAP, Adrencortical Carcinoma and Heart Disease not only is an issue of genetics but it now becomes an Endocrine issue. But, I'm wondering if it isn't also an immunological issue because once again something has gone wrong and our body/immune system is incapable of responding to the appearance of cancer cells...
Thanks for responding and I hope you continue with your research and discoveries...
Ross
Thanks for all the information. You have done a tremendous amount of due diligence work. I have not followed studies on FAP at all since I gave blood to Johns Hopkins about 20 years ago.
One thing that is interesting to me personally is the endocrine/cortisol issue - I know I have issues with these things - I won't go on and on about details. Whether it is because of FAP, a hysterectomy and oophorectomy, and/or just getting older - who knows. Probably multi factorial.
If I may per chance rant for a second - burnt out adrenal gland, etc. really almost killed me about 7 years ago. I'd had a surgery go wrong, a second one, and then a blockage. I had this weird experience in the hospital where (and this was after I did not have a fever) and it was not due to morphine - where my arms literally felt like they were on fire. I've had nerve damage there ever since, but I cope with it with vistoril pills. I have no proof, but I suspect hormonal issues were at play - but I can't prove it. Could have been all the drugs in hospital - or an allergic reaction, etc. I cannot go in sun at all anymore. I'm like a 75 year old in a 52 year old body. Well, life's tough and you do the best you can. But, I now understand all the old sayings such as "nerves got shot" and "wanted to tear there hair out" (I went through a period where I wanted to do this - I didn't do it). So, I take Zoloft and clonopin so I can sleep at night.
I know this is off topic - and I know I could try all kinds of hormone treatments, etc. - and if I try x, it could lead to heart disease. And if I try y, it could lead to breast cancer...on it goes - drives me nuts. So, I just try to take it as it comes and know there is no perfect solution...I also don't have the financial resources or frankly, the tenacity to go to dr. after dr. trying to find some magic bullet for all this. I believe that it's all related - and I have no doubt FAP and pouch over long term is going to have all kinds of repercussions regarding our general physical health. How could it not? That said, my relatives 2 generations back were dead by now.
I would imagine cardio docs don't have a huge interest - have 3 docs in family - and my first husband was surgeon and an anesthesiologist/pain doc - not all docs are bad, but they are generally so tired and they get caught up in their own specialties. I think research will continue...but I don't hold out much hope for docs working in private practice to care much about FAP and heart issues. That said, it just takes one or two!! Thanks for reading!! Thanks for sharing your information. Sorry if I sound cynical - I'll pep up.
Angie, I was about to suggest your being tested for Vitamin D levels and the possibility of spending time in the sun, especially after your response in the SIBO post. But, here I just read that you have problems going out in the sun... skin/nerve sensitivity in your arms... I think it's very complicated when you are taking so much medication. Being homebound is a great problem and becomes an increasing problem with age, since with age melanin (responsible for the first step in producing Vitamin D from the sun) becomes less responsive and people develop less Vitamin D, leading to a whole slew of potential illnesses and diseases, especially immunological, muscular and skeletal. You mentioned taking klonopin for sleep problems: the sun also helps melanin produce melatonin which aids in sleeping... Plus, certain medications prescribed for depression and/or neuropathy can cause additional neuropathies, such as parkinson's...
Ross
Ross,
I read the article....... http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2518080/
Also the others.........
That's talking about Adrenal Tumors, yes, but again doesn't show any direct correlation of CVD and FAP...........sure, there is a tangent, but, no correlation directly to CVD.
Is there a heightened sensitivity or predisposition to adrenal tumors for those of us with FAP? Yes. That's a very well known fact, though the statistics show "1-3%" of all us with FAP, I'm of the mindset that it's more on the order %15+ as what they don't have statistics on is people who go undiagnosed or who did go undiagnosed with FAP.
Certainly is a mountain of research you did. I'm with you, I'd be very very curious to see if anyone has direct studies for CVD and FAP or showing a direct correlation of the two, that would be interesting to see if there actually was!
Hope you've not taken my replies negatively, I'm always open to learn and gain insight that maybe I've not seen before............there's never a dull moment for those of us with FAP, that is for sure. I'm also not naive enough not to think that with our genetic mutation just about anything is not out of the realm of possibility.......it's like a row of domino's. You knock one down, how many others follow it and in what direction?
Charlie
