Dangerously Low (and falling) Cholesterol Numbers

[lurker69]

About 15 years ago, before any MDS issues, my cholesterol tested a bit on the high side (~220), but got to normal range (~200 total cholesterol) by eating healthy for two weeks and retesting.

The issue: Around the same time of my MDS diagnosis (June 2012), my lipids were tested and I was at a total cholesterol of 131, with a very healthy HDL (I don't remember the precise numbers.

Then, lipids retested in January 2013 and the total cholesterol dropped to 116 (HDL/53; Non-HDL/63 ; Triglycerides/59; LDL/51)

Now, total cholesteral has dropped much further to a total cholesterol of 96 (HDL/49; Non-HDL/47 ; Triglycerides/42; LDL/39).

Hypocholesterolemia, unbeknownst to many, is a very bad medical issue in its own right, and has been linked to heart failure, strokes, deppression/suicides, anger management and other cognitive issues.

Does anyone else have falling cholesterol and/or know what is causing this and/or knows what to do about it?

Has anyone found a doctor with expertise in this matter?

Thanks!

*****************************************************

I was diagnosed with RARS with 1% blasts June 2012. Hgb now around 9, good platelet count around 300 and ANC of around 1.5. No transfusions. Only weekly Aranesp.

My chromosome abnormalities are SF3B1 and DNMT3A. And I have acquired Trisomy 21.

[Chirley]

I have extremely low cholesterol. No Doctor has ever been concerned.

[Marlene]

For some children with autism,they too have low cholesterol and they have started giving some cholesterol supplements which is showing to be of some benefit. If I find the reference I'll post it but it's been a long time since I came across it.

Here's link explaining the role of cholesterol in autism. Even though this is focused on autism, you may find it can help in other disease processes. Towards the end, it discusses the role of cholesterol in the diet and other health implications you may find useful.

http://www.greatplainslaboratory.com...holesterol.asp

[rar]

My total cholesterol was 102, LDL 31, HDL 63, Triglycerides 38. Doctor is pleased with numbers. I don't think you need him. Some people with low cholesterol numbers are sick. No cause and effect have been proven.

Ray

[lurker69]

Chirley,

Thanks for the reply. May I inquire what your numbers are?

Doctors as a whole have been taught that Cholesterol is bad, and therefore low Cholesterol is good. But have you read about the numerous medical problems associated with hypocholesterolemia, or hypolipidemia as it is also called (among others)?

Originally Posted by Chirley

I have extremely low cholesterol. No Doctor has ever been concerned.

[lurker69]

Marlene,

Excellent article--- VERY helpful!

Originally Posted by Marlene

For some children with autism,they too have low cholesterol and they have started giving some cholesterol supplements which is showing to be of some benefit. If I find the reference I'll post it but it's been a long time since I came across it.

Here's link explaining the role of cholesterol in autism. Even though this is focused on autism, you may find it can help in other disease processes. Towards the end, it discusses the role of cholesterol in the diet and other health implications you may find useful.

http://www.greatplainslaboratory.com...holesterol.asp

[lurker69]

Ray,

Thanks for your input, and sharing your "numbers". That is very helpful!

I am not sure what you mean by, "I don't think you need him."

Regardless, while your Dr. may think low cholesterol is good, cholesterol in the range that you and I have are associated with depression, suicide, uncontrollable anger, strokes, heart-failure, and a whole host of other maladies, including difficulty in thought processes.

Beyond those factors, since cells (including all forms of blood cells) need cholesterol to form properly, low cholesterol means that a basic building block in our blood cell lineages are nowhere near optimal.

As such, it is a significant concern of mine. Perhaps your Dr. is not up on the research on the topic? Or, alternatively, my Dr.'s are simply worry-worts.

Again, thank your for your thoughts and help!

Originally Posted by rar

My total cholesterol was 102, LDL 31, HDL 63, Triglycerides 38. Doctor is pleased with numbers. I don't think you need him. Some people with low cholesterol numbers are sick. No cause and effect have been proven.

Ray

[Chirley]

I've never had a HDL/LDL ratio done just a total cholesterol and our measurement system must be different to yours because the last one I can find my last cholesterol was 1.6 and the range was 3.5-5.0

[rar]

An attempt at humor. You are questioning low cholesterol, my doctors think it is fine so they would not be able to help you.

Our cholesterol levels are on par with hunter gathers. So is this better or worse than levels among our over fed society. Arguments favor both. I favor levels of those with the "heart healthy diet chase them down folks".

Some sick people have low cholesterol. Is it low because they are sick, or are they sick because it is low. Arguments favor both.

I can't think of any of the problems you mention except I had a stent in my LAD, probably due to prior bad eating habits. Cardiologist thought arteries looked much younger than 74.

Both your conclusions are right, but which is more correct?

Ray

Originally Posted by lurker69

Ray,

I am not sure what you mean by, "I don't think you need him."

Regardless, while your Dr. may think low cholesterol is good, cholesterol in the range that you and I have are associated with depression, suicide, uncontrollable anger, strokes, heart-failure, and a whole host of other maladies, including difficulty in thought processes.

Beyond those factors, since cells (including all forms of blood cells) need cholesterol to form properly, low cholesterol means that a basic building block in our blood cell lineages are nowhere near optimal.

As such, it is a significant concern of mine. Perhaps your Dr. is not up on the research on the topic? Or, alternatively, my Dr.'s are simply worry-worts.

Again, thank your for your thoughts and help!

[rar]

To get from world wide to US units multiply by 38.67. Your US result would be 61.9 (135-193). You have us beat. Do you have all the bad symptoms?

Ray

Originally Posted by Chirley

I've never had a HDL/LDL ratio done just a total cholesterol and our measurement system must be different to yours because the last one I can find my last cholesterol was 1.6 and the range was 3.5-5.0

[lurker69]

Chirley,

The article that Marlene linked has the formats to create the conversion formula from your system to the one used here in the US. Namely, if I multiply the USA numbers by ~.0259, they roughly equate to your numbers. Likewise, if you multiply your country's numbers by ~39, they roughly equate to the USA numbers.

The reference ranges on your test, therefore, are roughly equal to 136 - 195. And your numbers, if I got the formulas and math correct, are equal to about a 62.5 in US terms.

The research paper available at http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3074286/ gives some interesting observations. Perhaps the most important of which are described in the "Anemia" section repeated below:

"Hypocholesterolemia has been described in various types of chronic anemia [12–17]. Few studies have suggested that such patients have a lower incidence of atherosclerosis associated events [12]. Types of anemia that have been reported to be associated with hypocholesterolemia include: congenital dyserythropoietic anemia [12], congenital spherocytosis [12, 13], sickle cell anemia [14], beta-thalassemia [12, 15], aplastic anemia [16] and sideroblastic anemia [17]. The exact etiology of hypocholesterolemia in anemic patients is not known and the data are not sufficient, however several studies postulated different mechanisms [12, 16–19], and some authors even suggest that hypocholesterolemia might be the cause rather than the consequence of anemia which is explained by the fact that cholesterol deficiency leads to rigidity of the erythrocytes [20] making them more prone to destruction. Hypocholesterolemia tends to occur in patients with chronic anemia and increased erythropoietic activity, and it has been suggested that this is due to increased cholesterol requirements by the proliferating erythroid cells [12]. Some researchers have demonstrated hypocholesterolemia in patients with aplastic anemia and correlated this with the elevated serum level of macrophage colony stimulating factor (M-CSF), which is known to have cholesterol-lowering activity, and they found that pretreatment total serum cholesterol and triglyceride levels nicely correlate with the counts of hemopoietic cells in the bone marrow. They concluded that low serum lipids suggest severe bone marrow failure in these patients and can help to predict the therapeutic response of each case of aplastic anemia [16]. Other researchers demonstrated a significant increase in serum cholesterol following splenectomy in patients with hypersplenism and preoperative hypocholesterolemia. They suggest a possible role of the spleen in lipid metabolism in these patients [19]. Bjerve et al reported a case of sideroblastic anemia and hypocholesterolemia due to autoantibodies against LDL causing an increased LDL catabolism [17]. Another animal study suggested that hypocholesterolemia in anemic mice is related to a decreased in vivo hepatic cholesterol synthesis [18]."

In any event, it can't hurt much to bring some of these issues up to your Dr. for consideration.

Again, thank you for your input and help!

Originally Posted by Chirley

I've never had a HDL/LDL ratio done just a total cholesterol and our measurement system must be different to yours because the last one I can find my last cholesterol was 1.6 and the range was 3.5-5.0

[Chirley]

My cholesterol level is the least of my problems. I really don't care about it. I have had MDS RAEB unresponsive to Vidaza, now bone marrow failure and progressive, terminal Neuro diseae.

I don't take notice of most of my blood tests any more....most of them are very abnormal.

[Marlene]

Interesting article. John always had a good total cholesterol and good HDL/LDL ratios. Nine months prior to his diagnosis he had a physical. All looked good. The only change was that the HDL/LDL numbers switched places. This shift was ignored since they were still within the normal range. We asked about that but were dismissed. Obviously, something was going on before his counts dropped. Just what it was, who knows. Two months earlier he had a bout of food poisoning. Always looking for that connection.

[lurker69]

I completely understand. My sincerest apology if I have been insensitive.

It really does show how whats important changes drastically as our diseases morph states.

I certainly DEEPLY appreciate your incredibly kind contribution to this site and my search for information...and am praying for you, your health and your loved ones.

Thank you again, so very much

Originally Posted by Chirley

My cholesterol level is the least of my problems. I really don't care about it. I have had MDS RAEB unresponsive to Vidaza, now bone marrow failure and progressive, terminal Neuro diseae.

I don't take notice of most of my blood tests any more....most of them are very abnormal.

[lurker69]

Thank you very much for sharing.

Yes. Always searching for that connection as well.

For what it is worth for anyone reading who might be interested... I have been focused lately on eating eggs, mayonaise, shrimp, crab, and other foods known to be high in cholesterol. And have added B complex, B9 (folate), C, D2, E (very important, and I was low), Fish Oil capsules, and a multivitamin without iron.

My cholesterol has rebounded from 95 to 126, and my hemoglobin from 8.4 to 9.2. Of course, numbers bounce all over regardless, so it is not anything but an isolated observation at this point.

Originally Posted by Marlene

Interesting article. John always had a good total cholesterol and good HDL/LDL ratios. Nine months prior to his diagnosis he had a physical. All looked good. The only change was that the HDL/LDL numbers switched places. This shift was ignored since they were still within the normal range. We asked about that but were dismissed. Obviously, something was going on before his counts dropped. Just what it was, who knows. Two months earlier he had a bout of food poisoning. Always looking for that connection.

[lurker69]

Thanks for the more accurate math formula!

As for the Stent... could this be related to the low cholesterol of our disease instead of your so far thought of "prior bad habits"??

I certainly don't know!, but I am concerned about my low cholesterol and seeing if increasing my cholesterol will make me less tired, less cranky, less sullen, more cerebral, etc.--- of course, along with better red blood cell (and white blood cell) levels.

In searching this site, I seem to have been the only person who is deeply investigated this possible link--- at least who has been writing about it.

Again, thank you!

Originally Posted by rar

To get from world wide to US units multiply by 38.67. Your US result would be 61.9 (135-193). You have us beat. Do you have all the bad symptoms?

Ray

[Marlene]

You may wan to consider switching to D3 instead of D2. D2 is synthetic and not as good as D3 therapeutically. And, just in case you aren't using the more bio-available B vitamins, you may want to switch those too when it comes time to replace them.

Some are using vitamin K2 with their D3 since that combo has been shown to be helpful for some with MDS.

Good luck and keep us posted.

[Mseth]

Hi lurker69,

After reading your post I got cholesterol tested for my mother. Turns out she has low cholesterol - 103. She's not been tested for this in a long time, but many years back she had high cholesterol. Maybe, it is something to do with this disease/chronic anaemia.
She is a vegetarian, the only food sources for her are butterfat or similar. Any supplements you know of?
Great that your Hb has increased, keep us posted on the progress and good luck!!

[lurker69]

Excellent suggestions!

I've read the study from a while back about k2 with d3. Haven't seen any new updates about that. Have you?

In any event, time for another trip to the vitamin shop!!

Originally Posted by Marlene

You may wan to consider switching to D3 instead of D2. D2 is synthetic and not as good as D3 therapeutically. And, just in case you aren't using the more bio-available B vitamins, you may want to switch those too when it comes time to replace them.

Some are using vitamin K2 with their D3 since that combo has been shown to be helpful for some with MDS.

Good luck and keep us posted.

[lurker69]

Thanks for sharing!

It seems well established that there is a link between MDS and low cholesterol.

What is not established is how often low cholesterol could be the cause of MDS, if at all.

What is also not established is the results of increasing low cholesterol as an aid for procrit, etc.

I can say that I feel much less lethargic with my increased cholesterol. Psychological or Physiological? Either way, I feel less lethargic.

I will keep everyone posted and GREATLY appreciate you and others continuing to share their stories!!

Originally Posted by Mseth

Hi lurker69,

After reading your post I got cholesterol tested for my mother. Turns out she has low cholesterol - 103. She's not been tested for this in a long time, but many years back she had high cholesterol. Maybe, it is something to do with this disease/chronic anaemia.
She is a vegetarian, the only food sources for her are butterfat or similar. Any supplements you know of?
Great that your Hb has increased, keep us posted on the progress and good luck!!

[Mseth]

Recommended dose for Vit K2 is 45 mg/day along with vit d3. My mother tried this combination for several months, no improvement in counts. Vit k2 liquid form - Thorne Research.
She now continues to take k2 15 mg daily alongwith d3 but not in the high recommended dose.
A product by the name of Osteo-k is available with the required amount of k2/d3 in capsules. It's worth a try as there are no unwanted side effects.

All the Best!!

[rar]

Another data point in cholesterol vs. MDS. Last July 1 I had a SCT. I have been through some tough times since then. Recently my oncologist told me he thought my MDS was cured. Last week I had a cholesterol test. My total cholesterol when I had MDS was 96. The recent test was 207. Diet and exercise were somewhat different, but not that much. This is a data point of one.

Ray

[Marlene]

Very interesting Ray.

[Cheryl C]

Hmmm! Here's an exception. My cholesterol has always been a bit high - 5.6 (non US measurement) last time. I am vegetarian and very health conscious. There is a family history and I can only put it down to that. Obviously the MDS is not having much of an influence, but then my blasts are within normal range at present so perhaps that makes a difference?