I have CAD. Now what?
First of all, do you really have CAD (Cold Agglutinin Disease)? A confirmed diagnosis? Don’t jump to conclusion without confirmation by a medical professional. This is a very rare disease. Its estimated  that only 16 in 1,000,000 are affected by CAD to some degree.
We are often asked. “What should I do if I have been told, or suspect I have CAD (Cold Agglutinin Disease”? Our recommendation is to immediately get with a good Hematologist, a CAD qualified Hematologist if at all possible. Then keep your own personal copies of all tests, office visit documentation, diagnosis, etc. Then educate yourself.
Especially educate yourself on blood tests, and blood test results.
Don’t mess around with doctors that do not seem to have knowledge or experience concerning Cold Agglutinin Disease. Situations where office visits and referrals seem to just slow everything down. This can delay getting to a diagnosis. Or providing info you need to keep yourself feeling better. Seek out highly qualified Hematologists and testing facilities.
Keep yourself warm 100% of the time until you know more, and figure out your bodies responses and visual/physical warnings of possible hazardous situations.
Try to avoid people that are sick, have colds, etc. In this era of Covid always wear a mask in public.
These recommendations are probably the most important things you can do to help yourself until you know more.
To diagnosis CAD. Numerous tests are often run. Such as RBC/CBC, Cold Agglutinin Titer, Coombs, various IgG, and IgM for specific known triggers, Retic Count, and Bone Marrow biopsies.
See Member Recommended CAD Proficient Hematologists/Oncologists list
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If you have never been told your blood shows signs of Agglutination. I would really question why you are even thinking you might have CAD? Agglutination is one of the initial indicators. A common denominator so to speak.
Did you recently give blood, or had a routine blood test? Then receive some kind of notice you may have CAD? A notice of “Agglutination” present in your blood? Normally a note on a CBC/RBC test. Is that why you are here investigating?
Some forms of CAD are temporary. CAD can flare up for instance, during an “Acute” stage of a passing virus.
There is a big difference between the temporary type, or having to deal with CAD the rest of your life.
In the more permanent type of CAD. There is what is termed “PRIMARY CAD” , and also “SECONDARY CAD“.
More recently we are seeing a third term has surfaced. CAS (Cold Agglutinin Syndrome). Which seems interchangeable with the term “Secondary CAD”?
Primary CAD is when there is no known secondary cause that continues to trigger your CAD. Often referred to as Idiopathic. Or having no known “Comorbidity” issues.
Secondary CAD is when there is another identifiable disease or medical issue triggering your CAD. Or when the patient does have CAD triggering “Comorbidity” issues.
You will see the term “Comorbidity” used often. In it’s simplest form, the word means multiple diseases.
Somewhere along the way, if long term CAD is present or suspected. Doctors most likely will have to do a wide array of specialized testing. First to try and determine if your CAD is Primary or Secondary.
Secondly to formulate some type of treatment plan based on what they positively identify.
Lots of this testing actually involves eliminating or identifying, possible known triggers of CAD.
In all cases it is best to keep overly warm 100% of the time until you know more.
In testing for known triggers. Diseases such as active Lymphoma, to name one, may be found. This type of CAD connection, to another disease. Will lead to a diagnosis of what is termed Secondary CAD. Doctors may have to treat the other active disease they identify, in an attempt to reduce or eliminate the CAD symptoms.
This entire website and contents is mostly about CADs dealing with this long term…..as in years, or the rest of their lives.
Some of the symptoms of CAD, can mimic those of other diseases or health issues. Many CAD’s often complain about the following:
* Can’t do anything strenuous
* Lightheaded to passing out
* Aches and pains
* Pounding pulse in ears
* Elevated pulse rate
* Nose, Fingers, ears, toes, get dark when cold or exposed to cool temps.
* Skin sensations, crawling feeling, especially of the scalp or head
* Molted skin, discoloration, hives, itching, when exposed to cooler/cold
Before you start making assumptions. Get with a qualified Hematologist. One that has experience with CAD will benefit you even more. This recommendation will be repeated numerous times throughout this webpage and other places within this website.
At a very minimum, most CAD patients traveling down this path. Will suggest, that you gather your own personal copies (paper copies) of all testing, in which Agglutination was detected. As well as gathering any other testing going forward. Especially if “Agglutination” notations of some sort, are on tests that are spaced far apart (i.e. months or years). Indicating this may have been around for an extended period of time.
We are talking not just about collecting blood test results. But also collecting radiology reports, scans, pathology, doctor office visits documentation, diagnosis, etc.
One of the first clinical alerts you may have Cold Agglutinin Disease (CAD) is when a routine blood test, a CBC/RBC comes back with notes indication “Agglutination Present”, “Had to reheat sample due to Agglutination”. Or some similar notation. Even though the results of the test may appear otherwise normal.
A low Hgb and a High Retic count is another possible flag. Or even a normal Hgb and a High Retic.
Unfortunately a Retic count/rate blood test, is often never ordered during a normal routine annual physical. Retic may never get ordered until the Hgb may fall below normal levels, indicating Anemic levels, or you happen to be seeing a Hematologist for some reason.
You want to establish and document your time line the best you can. You also want to establish and documented your “good” base line, when you were testing normal, or at least feeling normal.
Keep your own personal paper records going forward on any, and all records/testing. Whether you think the testing is related to CAD or not. Put all of your records in a binder, in chronological order. It can’t be stressed enough….to accumulate and keep your own records!
Write notes on them, or insert note pages in chronological order to document such things, as how you are feeling, temperature, weight, Blood Pressure, Oxygen finger tests, and Blood Sugar if applicable. Observations of the whites of your eyes, color of your urine, etc. Incidences of discolored fingers, nose, etc. ….and how long it lasted.
Much of what your learn about yourself will be by trial and error. You need to document, so that you can relate visible/physical triggers, to perhaps follow-up negative repercussions.
Or it can remain static for a long time.
Sensitivity to the cold can be low level with relatively no impact on ones lifestyle. Others can be highly sensitive, which can be inhibiting on personal lifestyle, as well as in the workplace. This sensitivity can change for the worse as years go by.
Also to clarify “Sensitivity to the cold”. In this regard to CAD. It has nothing to do with actually feeling the cold, or pain associated with the cold. We are talking, a sensitivity point at which your blood starts an excessive hemolysis reaction. That in turn, starts destroying your Red Blood Cells at an accelerated rate. This can often be occurring when there is absolutely no discomfort to alert you something is wrong.
Most CAD’s have some continuous ongoing Hemolysis that is above a normal persons natural die off, and replacement of Red Blood Cells.
If CAD is short term for you so far. You may find CAD is passing in nature. Once whatever secondary medical issue cause, might resolve itself. CAD could possibly go away?
Do you recall any medical event between when you tested OK, or felt OK. Or some medical event, between a normal RBC/CBC blood test, and a RBC/CBC test that has some type of agglutination notations first showing up? If so, make notes in your binder of dates, symptoms, any diagnosis, treatment, medications, etc.
Mycoplasma Pneumonia (walking pneumonia) is a prime suspect for Primary CAD. Mycoplasma Pneumonia seems to be one of the smoking guns for some cases of Primary CAD. But often many don’t get clinically tested. They never have any tangible result to prove anything specific. They may be given antibiotics for what was thought to be bronchitis or a “chest cold”, and seemingly recovered unscathed.
It would take some clinical blood testing to truly associate/prove this. Some specialized IgM testing while sick. Or after recovery, some specialized IgG testing.
But most people that go through Mycoplasma Pneumonia, never develop CAD. CAD is the odd disease that spins off. Then ends up affecting a very small slice of the population.
If you are in the early stages of lifelong CAD. You may not necessarily be anemic. As many might think you should be. Many long term CAD’s will even incorrectly tell you that to be CAD, you have to be anemic. It even appears some doctors make this assumption at times?
The primary question goes back to. Is your blood showing signs of agglutination?
Anemia may not appear at first. Especially if a mildly sensitive CAD. Has an elevated Retic Rate. A higher than normal Retic Rate that is compensating for elevated hemolysis, and any above normal Red Blood Cell loss or die-off.
Often Retic is never ordered tested by a doctor. Especially when you start complaining of generalized symptoms, of which any could point to endless other illnesses.
We recommend you insist this test is run at the same time you do a CBC/RBC if you are suspecting CAD. It is even wise for the confirmed CAD, to periodically have this test run and keep documented results.
A missed higher than normal Retic Rate, because it was never tested. May fail to trigger any initial medical investigation concerning CAD? Not until Anemia may pop up sometime. Perhaps even years later. [Note]; The Retic blood test is rarely ordered in any routine annual physical workup]
So if your doctor is running a CBC/RBC because you, or the doctor, suspects CAD. Especially if the “Agglutination” notations on a CBC/RBC was your initial red flag. Make sure they are testing your Retic Rate too. Request your Dr order it, if he/she hasn’t. It is a simple blood test that can be done the same time they are drawing a sample for your CBC/RBC.
While they are testing (CAD or suspecting CAD), do these on a periodic basis too. Be sure you know your:
* Iron levels
* Iron “Stores”
* Vitamin B12 levels
Also see: Retic – Iron – B12 Connection
These are only basic tests. They will not get to the root cause. But may identify some of the other things that are often found abnormal with CAD. Levels that need attention. To at least maintain in normal ranges to help you feel well, or restore some of your energy.
We explain some of this in more detail at the link : Retic – Iron – B12 Connection we posted above. Not that these are the only levels that needs monitored.
Many have been through this scenario in the early stages of CAD. CAD being overlooked or “watched” without any info given to the patient. Especially if you aren’t looking at your own blood work and understanding it. Info that might help you, keep yourself feeling normal. Hopefully it may prevent you from going months or years feeling crummy or tired. Or worse triggering some type of medical crisis when things progress beyond your tipping point.
This scenario included my wife [CAD since 2000 at least]. If truly the initial onset of CAD was that year. Simply staying warm all the time would have gone far to improve her quality of life…..had we known.
Medical professionals either missed her CAD, when it was already present? Or they failed to mention to her why “Agglutination” notations were showing up on blood tests? What precautions she could take to stay healthy. Retic was never tested until she was in a low, seriously low, Hgb crisis.
Her Hgb was in the normal range for years. Looking back on early blood tests. There were notes of “agglutination”. Multiple doctors never brought it up. Hgb floating in the low range of normal. No one suggested investigating anything. No one recommended precautions, supplements, or doing anything that might aid in staying healthy and keeping the Hgb at normal higher levels. You know…things as simple as keeping warm!
Getting to a CAD diagnosis requires testing that is normally not run in the course of a general/annual physical.
In my wife’s case, she noticed her fingers and nose turned dark at times of getting cold. There was no pain, etc. Still not suspecting CAD, or any health impacting issue. We had never even heard of CAD back then.
The typical doctor response at the time. To her asking about her finger getting dark. ….. “you must have Raynaud’s for your skin to turn colors like that”. Again, no clinical testing or follow-up at the time, to verify that off the cuff comment or suspected diagnosis.
All things looking back … should have taken place.
Not until she passed out one day. Taken to the Emergency Room. She was very anemic at that point. It got their attention then.
Was there any attention focused on those “Agglutination” notations by doctor ordering CBC/RBC’s? Indicators present years prior? It certainly didn’t appear that way.
Not until anemic conditions were obvious and present.
Those in stages of CAD. When CAD begins to affects their health. They are most likely dealing with some abnormally low Hgb level, or what is termed “Anemia”.
Or they may deal with a high Retic count, that may be compensating to keep Hgb levels normal or low normal? But if Retic is not checked. One would never know.
The telltale factor of a CAD, is issues brought on by exposures to cooler or colder temperatures. In a CAD, cold accelerates hemolysis, excessive Red Blood Cell destruction, lowering of Hgb, and perhaps Anemia showing up. CAD’s also identify with having a higher than normal Retic Rate trying to maintain Hgb levels…….. if it gets checked. But again it often doesn’t get tested.
Without performing some of the more uncommon blood tests. A good looking Hgb can be a false sense of well being if CAD is present. Especially if the Retic wasn’t measured, and it is working overtime to maintain normal Hgb levels.
Iron and Vitamin B12 are two of the main ingredients the bone marrow consumes to make new Red Blood Cells, via the bodies Retic function.
So there can be a critical domino effect. Iron, B12 or both, get consumed faster than normal with an elevated Retic, which is elevated maintaining Hgb that should be lower due to CAD triggered Red Cell Destruction. Iron, B12 or both drop below normal or get depleted, Retic slows considerably, then the Hgb drops and the patient becomes anemic due to low Hgb. This can be slow, or can happen relatively quickly.
Marginally normal Hgb. Levels in the low range of normal, may not be felt by many. For others they may complain they just don’t feel quite right. Or fatigue more easy than they used to. If the patient doesn’t relay this to a doc, or a doc doesn’t pick up on this and run some tests. The patient might be just blown off until another visit, another month/year, another doctor, or to the point things become more critical.
What can you do to help yourself without hardcore pharmaceuticals?
If CAD or even knowing your RBC/CBC tests indicate agglutination ….. simply keeping warm 100% of the time can go a long way. But that is often a challenge when factoring your lifestyle pleasures, or work related activities.
As we indicated earlier. Higher than normal Retic Rates (body creating new Red Blood Cells) can consume the body’s Iron and Iron Stores. As well as its Vitamin B12.
Retic is a bone marrow function. Producing new (immature) blood cells. The body function to replace normal RBC die off. That happens to even normal, non-CAD’s. It is normally a regulated function that maintains a good level of Hgb.
In the CAD, their body should be making new RBC’s for normal die off. In addition, a CAD body is also attempting to replace accelerated RBC die off, in the form of some abnormally higher level of Hemolysis.
Retic function consumes Iron & B12 via the bone marrow function.
Low levels of Iron, or B12, or both. Can easily create a tipping point within a CAD body. A sudden falling of Hgb. It would be similar to suddenly running out of gas in your vehicle. Not that this is the only cause of a falling Hgb.
On the subject of Iron, there are two things to measure and monitor. Iron Blood level, and Iron Stores.
Depending on a higher than normal rate of Retic. Accelerated Retic, accelerates the normal depletion of Iron and B12 at varying rates.
Some of the few things a CAD can actually do to help themselves maintain a normal Hgb are:
* Slow hemolysis caused by cold/cool exposures
* Maintain Blood Iron Levels/Stores
* Maintain B12 Levels
* Avoiding getting passing colds, viruses, etc.
Slow hemolysis caused by cold/cool exposures
Staying warm should be a known “given” for a CAD. Maybe your doctor didn’t suggest it to you? Not doing so, is often the cause of above normal hemolysis for a CAD. As low or high as that might be.
Depending on CAD’s sensitivity or reaction levels. Impacting exposures can be from air temperatures, cold food/beverages, breathing cold air, swimming bathing, and evaporation due to sweating or wet hair/clothing. Even not toweling off quickly after a bath/shower.
Maintain Blood Iron Levels/Stores – Maintain B12 Levels
Click Link for More Details on the Connection between Retic – Iron – B12
Many CAD’s may be unaware of the Iron and B12 connection? Even though they may have been prescribed these supplements by a doctor? They might not understand why if it wasn’t explained?
Worse, you might not know about the connection? Your doctor may not have gotten to this point either? Especially if your Hgb hasn’t slipped into the abnormal range yet?
Maintaining proper B12, Iron blood levels, as well as “Iron Stores”. Requires periodic testing, possible diet changes, supplements, or injections. All must be monitored and done under the supervision of your doctor. All CAD’s are different. To be clear. Don’t just start taking a handful of vitamins or supplements without supervision.
While diet certainly can go a long way in maintaining Iron and B12. Many CAD’s will need help in the form of supplements or injections, as indicated. Especially if a CAD tries living life as a normal person, then getting cool/cold exposures that trigger excessive hemolysis.
The part that is hard to comprehend, are the difficulties the medical professionals seem to have. Connecting this CAD issue, to negative health issues you may be experiencing. Especially in some of the early stages, or low levels of sensitivity stages.
Some patients in early stages may not be aware of anything occurring within their body. Though above normal, yet low level hemolysis is most likely is taking place. Once you start showing signs of anemia, it may finally get the attention of a doctor that might otherwise never realize something was truly happening to you, all the time?
Avoiding getting passing colds, viruses, etc.
Passing colds, viruses, etc., that might impact a CAD more than a normal healthy person. Those are often even more difficult to avoid or control.
[Repeating here] Many people are searching the internet. Attempting to find their own answers to their health problems. Not using a medical professional to provide a diagnosis. You need to seek professional medical advice, and testing. To confirm or rule out something specific such as CAD. Typically you need to seek out a qualified specialist (Hematologist).
Even if you know you are anemic, your skin turns colors or reacts when exposed to cold, or you feel cold all the time, this does not confirm in any way, you have CAD. In fact many CADs don’t feel cold any differently than a normal person, its just that cold starts destructive hemolysis reactions within their body.
The skin discoloration when exposed to cooler or cold temperatures is not always a true physical indicator of Cold Agglutinin Disease. This physical symptom if truly CAD, is often incorrectly referred to as Raynaud’s Disease.
You do have to question a Raynaud’s diagnosis. Especially if you were diagnosed as Raynaud’s years ago based on observation, without any clinical testing.
Whereas this can be incorrectly applied inversely.
These two diseases (CAD verses Raynaud’s) are totally different diseases, and triggered by totally different distinct causes. Not to say a person might not be able to suffer from both.
It takes specialized clinical tests to sort this out. Don’t go off a diagnosis even from a medical professional that based your diagnosis strictly on observation, or your recollection of your own observations.
If you haven’t done so, and you suspect, or have been told you have CAD, see a Hematologist/Oncologist. One well versed in CAD is even better. At some point you will most likely deal with some level of anemia. If you aren’t already.
Be aware there are numerous forms of anemia that are not related to CAD at all.
There are specific tests to confirm a CAD diagnosis, or rule out serious secondary causes. No single test. It takes a battery of blood tests, bone marrow biopsies, PET Scans, or other types of scans. It would be wise to have all the investigation done before a doctor suggests “lets try “xyz” treatment to see what happens”.
Bear in mind much of this information is compiled from the input of numerous other CADs. Also from the observation, and trials and tribulations, of one CAD person that was diagnosed with CAD around 2000. But mostly likely had it (missed or un-diagnosed) since the mid 1990’s.
This information is not all, from medical professionals. Throughout our webpages we will help point you to other factual or observed information.
This is meant as information only. For those with confirmed cases of CAD. Our info is not written in technical medical language. Not meant to be.
This info is not for someone trying to connect their personal health issue to a possible cause. Again, don’t jump conclusions. See your doctor for a proper diagnosis based on test results.
Never let any of this information supersede professional medical advice given to you. Be aware all CADs are affected in different ways and at different severity levels.
Just What is Cold Agglutinin Disease?
In a nutshell a CAD patient has autoimmune issues. The body’s own immune system, attacks and destroys the body’s own Red Blood Cells. Cold triggered Antibodies attack your own Red Blood Cells and cause them to “Clump” together, and burst.. The attacks in the case of CAD, happens when the person is exposed to temperatures less than body temperature. That reactive temperature variant is different, CAD to CAD.
Once the CADs Red Blood Cells begin to clump or bind together (Agglutination), due to that persons trigger temperature. There is an premature die-off cycle of red blood cells. This excessive binding/Clumping does not occur in a normal person.
One blood test that is often looked at when diagnosing CAD, is a test referred to as “Titer” or Cold Agglutinin Test in which the results are reported as a Titer (Ratio). This is a specialized test. This test is not a test that is normally run for say, an annual physical.
Another test used in diagnosing CAD is known as a Coombs Test. This test is a specialized test too. One that is not commonly run unless a Hematologist is looking for something based on other abnormal tests or information.
Neither of these tests can be used as a stand alone test to prove anything. So just bear that in mind when looking at test results without your doctor explaining things to you.
Often a CAD has no difference in immediate feeling, such as feeling cold as some might assume. CAD’s often do not know or “feel” agglutination and hemolysis is happening. It can often occur in a CAD when they feel comfortable. When they feel well and healthy. Some sources suggests, the may be low level, above normal hemolysis, occuring all the time in a CAD. Perhaps at some low level the body can sometimes compensate for with an elevated Retic function.
Add some cold temperature exposure that triggers additional Hemolysis, and some CADs can get in serious trouble quickly.
All of this makes it difficult for those new to CAD. Especially trying to identify their personal temperature triggers. Or how to avoid becoming anemic, by simply staying warmer than that trigger temperature, all the time.
The after affects of excessive Red Blood Cells dying (Hemolysis), are what a patient may actually begin to feel or experience. Symptoms can range wildly based on many factors such as how cold reactive a patient is, the cold temperature exposure range, the length of the cold exposure, or frequent repeated short term exposures to cold temperatures.
The lowered or falling Red Blood Count (Anemia) level (If CAD), as indicated, is related to the patient being exposed to cold or cooler temperatures. It is detectable in the lab using specific blood tests. The severity of this falling Anemia, and at what trigger temperature it starts, varies all over the place, from CAD to CAD.
Another identifying factor as previously indicated. Is a CAD will have a higher than normal Retic Rate. (the body’s Production of new Red Blood Cells).
Once the CAD’s body is unable to compensate through Retic, to maintain normal Red Blood Cell levels, the CAD will start sliding toward, or becoming Anemic, or more Anemic, to some degree.
So with a combination of the Cold triggered immune response that destroys Red Blood Cells, and a higher than normal Retic rate. This classifies the Anemia type as “Autoimmune Hemolytic Anemia” or more specifically Cold Autoimmune Hemolytic Anemia, or Cold Agglutinin Disease. CAD is associated with other names or abbreviations such as, Acquired Autoimmune Hemolytic Anemia or AIHA.
Other forms (other Anemia Categories) of Anemia, may also come into play within a CAD during their course of dealing with CAD or other influences.
Especially when a CAD is dealing with a passing virus. This further complicates matters and often results in a sudden drop in the Red Blood Count/Hemoglobin level. Rather than a slow RBC decline, or low static RBC, a CAD may otherwise experience just dealing with the cold.
A rapid decline in Red Blood Count/Hemoglobin levels in a CAD. Is often a warning for something else going on, in addition to the normal CAD response. Especially when there has been no notable cold temperature exposure. This is often a trigger or flag, for long term CAD’s to seek immediate medical attention.
The more Technical side of CAD
When a CAD is exposed to cold temperatures. Certain proteins that normally attack bacteria (IgM Antibodies) attach themselves to Red Blood Cells, incorrectly treating them as foreign invaders. In this case triggered by a cooler/cold temperature. Binding them together (Agglutination), causing the Red Blood Cells to be destroyed.
“Cold”, in the case of a CAD, varies patient to patient. Often not anything the CAD actually feels as out of the ordinary.
When we say “cold”, we mean anything below normal body temperature of 98.6°F/37°C. The range a CAD is affected by a lower temperature, again varies patient to patient and seems impossible to predict. Most CADs learn their trigger temperature by simple observation of some of their physical symptoms. By trial and error.
There is a blood test that some Doctors order to back up their diagnosis. They order a Thermal Amplitude Blood Test. This gives conclusive evidence that red cells are clumping at lower than body temperature. Something normal (non CAD) red blood cells will not do during this test.
The Thermal Amplitude Test will also give the CAD patient some idea of how reactive their blood is to the cold.
Whether you could take any resulting test number, or lab temperature measurement level. Then attempt to equate that to a specific air temperature trigger for said CAD….well that seems highly speculative, if not impossible. Clothing and other factors such as poor circulation, and length of exposure, come into play too. Though this test may indicate what range a CAD might fall into though. Low reactive, medium, or severe.
Tests are often run such as RBC/CBC, Titer, Coombs, various IgG, and IgM for specific known possibilities, Retic Count, and Bone Marrow biopsies.
As previously indicated, Agglutination causes the Red Blood Cells to be prematurely destroyed (Hemolysis). In the case of CAD, brought on by cold exposure.
Cold exposures can be a long exposure, or an accumulation of a series of shorter exposures. Exposures can be air temperature related, evaporation type exposures, and or food/beverage temperature related. Even the temperature of air breathed, can have serious impacts on the more cold sensitive CADs. Reactions are not always a winter issue as some might conclude.
For some more sensitive/reactive CADs, swimming or bathing in relatively warm but cooler than body temperature water, can trigger problems.
Even exercise that creates sweaty wet clothing can be cause for concern if you begin to chill. Situations where a wet body or wet clothes exposed to evaporation, begins to lower your skin temperature.
Exposures to Air Conditioning you can’t regulate. The type of air temperature that is comfortable for the average person. Is often a trigger for some CADs. The CAD may even find that temperature comfortable, yet Hemolysis inducing?
This makes working in an office environment hazardous to the more reactive CADs. This might even extend to shopping any length of time in an air conditioned store, or the frozen food area of a grocery store.
But none of this applies to all CADs. Remember there are different levels of severity.
Much depends on the patients reactionary levels brought on by the disease. Any of the conditions discussed can affect any CAD differently. Cold sensitivity appears to get worse for some CADs, the longer the person has the disease. Does it mean it will happen to all?…….most likely not.
CAD can actually be temporary and actually go away.
It takes blood tests to confirm you truly have Cold Agglutinin Disease. Don’t just assume you have CAD, based on other conditions that may mimic some of the symptoms.
In a healthy body, normal red cell die off and replacement is properly regulated and kept in balance.
In a CAD, the balance slips due to varying factors. Cold causing red blood cell destruction, and the persons Red Cell Count to go lower than normal (the patient becomes anemic).
Red cells in your blood, carry the oxygen from your lungs, to your organs and muscles. Should your red count go lower than normal, your body compensates to keep the supply of oxygen constant, Retic’ing faster, the heart pumping faster to circulate the blood faster, etc.
As Anemic conditions surface, the CAD may experience symptoms of an elevated pulse, headaches, shortness of breath, the inability to physically exert oneself, fatigue, dizziness, confusion, brain fog, difficulties making a decision, and more. If you are Anemic enough you shouldn’t be out there driving.
If your body is Retic’ing at a high rate trying to compensate for lack of Red Blood Cells. Trying to produce red blood cells at an accelerated rate. Some CADs report bone pain or constant aching. The type of ache, that changing positions or moving around, never seems to alleviate.
It is highly recommended you find a Hematologist doctor, that is familiar with CAD. It would be wise to identify you are truly dealing with CAD and not something that mimics some of the symptoms.
It would also be wise to eliminate the possibility CAD is not a precursor to some other underlying issue you may need treatments for. Especially the onset of Lupus, Lymphoma, etc. Much of this may depend on how aggressive your doctor is, or the approach they take. How insistent you are. Or quite possibly it may be dictated by your health care insurance coverage, or lack thereof?
Some of this testing not only requires a variety of Blood tests, but also Bone Marrow Biopsies, and possibly Body Scans to rule out various other possibilities.
Just as a reminder. This info is broad range in nature. Not intended to make you jump off the deep end and think every test out there is necessary.
If nothing else, get yourself established with a Hematologist from the onset. More than likely at some point in your life, now having CAD, this may become a necessity anyway?
If your CAD is only passing in nature, most of this will not apply.
In some cases CAD is brought on by some type of infection or secondary illness. It may never go away after you recover from the secondary illness. But it may go away,
Some CAD’s may only experience the CAD issue on a temporary basis.
Until some time has passed after being identified as CAD. [6 months to a year???]. It might be wise to treat yourself as if it will remain? There does not appear to be a way as of yet, to diagnose whether it will be temporary, or a long term issue. Only time will tell.
You will want to know
Do you truly know (confirmed via a variety of tests) you have Cold Agglutinin Disease? There are other conditions that mimic some of the physical symptoms.
Is your CAD condition only temporary as your body fights off some type of negative health event? Don’t ignore the condition until you know for sure it is gone. Stay warm at all times, even when you don’t feel cold. Read through the physical signs listed below.
Is this CAD issue just a number on a blood test that is not impacting me physically? Some low level form of CAD that remains static?
Should I seek additional testing? For things like my body’s Retic Rate (Replacement of Red Cells). Or other diseases that might have a relationship with CAD?
Is this serious enough, that I am considered Cold reactive and it will do damage to my body, if I ignore it?
Do I need to start observing physical signs so I can become proactive?
Are lifestyle changes required to protect my health?
Is medical/treatment or intervention needed beyond lifestyle changes?
In addition to CAD (COLD Agglutinin Disease) there is also WARM reacting auto antibodies. Those often show up, out of normal ranges, in blood testing when COLD is identified.
There are additional tests to eliminate or identify other impacting causes. Or to establish baseline results, or severity. Most recommend a Bone Marrow Biopsy.
Not to discount people with WARM issues. We just don’t know much about the warm side of things. No WARM knowledge we can share in this document. While Marilyn tests positive for both COLD and WARM. She has not had to deal with anything having to do with WARM.
Any supplements of course, should all be supervised and prescribed by a medical professional. In doing so, your Dr most likely will require additional blood testing panels be run to identify/monitor current levels, or deficiencies. To monitor whether adequate dosages are prescribed. You also do not want to over shoot normal levels, attempting this unsupervised.
Use any prescribed medication or supplements in conjunction with staying warm at all times. In fact, staying warm at all times may benefit you more than perusing any pharmaceutical approach. Much depends on the individual and the lifestyle they attempt to live.
Temperature can impact some CADs both externally (air and water exposures), as well as internally (ingesting cold foods or drinks, or breathing cold air). Bathing, swimming, and sweaty clothes can come into play.
In more severe cases, (more reactive to the cold), a CADs lifestyle, or quality of life is more seriously impacted. Many CADs (under doctor supervision) agree to take additional steps in the form of various Lifestyle changes, “Infused Antibody Therapy” treatments, or Chemotherapy like treatments.
One such popular Chemo like treatment (truly not Chemo but a Bio engineered antibody pharmaceutical ) is “Rituxan” [Rituximab]. Rituxan was originally approved as a cancer treatment. So many people, often incorrectly refer to Rituxan as chemo.
There are various others pharmaceutical treatments in clinical trials and experimental type treatments. Many of the options are often administered in conjunction with other therapies.
Bear in mind there is no “Silver Bullet” that has been found to eliminate CAD (As of yet). Some CADs report positive results achieved with lifestyle changes alone, with medical/pharmaceutical intervention, or a combination of both.
Other CADs going through the same medical treatments or precautions may not see the same results. Some report no positive results, and some even have negative side effects. Trying to find an answer to make a personal decision is often filled with tons of frustration.
There are also considerable risks to be assumed with any treatment. Or doing nothing. There is an important balance to weigh, concerning benefit over risk. That is certainly a personal choice based on what “facts” you may be given, or can dig up.
Even if you take a “wait and see approach” you may want to do that a little more aggressively than sitting back, and simply doing nothing.
Do have periodic blood tests for CBC/RBC to monitor your hemoglobin/Red Cell levels. Retic, Iron, and B12. A base line test when you are feeling well is great to have. Keep your own personal copies.
With periodic tests, make sure you are not Anemic, or sliding in that direction. This is more important if you are CAD/Cold reactive. Annually, Quarterly, Monthly? More frequent in colder months? Each CAD is different and unique concerning their health, CAD reactivity, and what may be required as a form of anemia prevention or treatment.
Stating again, It is good to know, and have your baseline documented when you are well. Keep copies for your own records. If you suspect at any time you have symptoms of becoming anemic get a CBC/RBC blood test done as soon as possible. If you are experiencing severe symptoms, get yourself to an emergency room or medical facility immediately.
Our doctor, as well as what other CADs report. All did extensive screening/testing once CAD popped up in blood work. Additional screening was done to eliminate other serious possibilities. Such as Lymphoma, Waldenstrom, Reynaulds, etc. Some of these tests require a bone marrow test.
Some CADs are at a stage they may not be seriously cold temperature reactive. Testing may have just picked up CAD indicators on a routine blood test?
You may be a lucky one and aren’t showing physical signs, or negative impacts to your health or Hemoglobin/Red Blood test results? You may be able to function just fine without lifestyle changes? But be aware that can change at any time.
Your CAD severity level may remain static, or not, as the years pass? It quite possibly could be temporary?
If you know you are reactive to the cold. As in, having notable physical symptoms you can visually observe. You need to address that. The below info may help?
Visual Physical Indicators for CADs and their loved ones to watch for
We talk about stages or observations that seem to lump together what might be happening to a CAD based on sensitivity or cold exposure. Don’t think that this is a medical term related to CAD and start throwing this term at a doctor or medical professional. They won’t have a clue what you are referring to.
We as CADs, have tried to categorize what might trigger a CAD event/reaction, blood testing problems that may surface, and causes for concern based on different levels of sensitivity or reactiveness, We grouped this into 3 groups based on what we CAD’s generically call “STAGES”. “STAGES” is not a true medical term….yet. We discuss this in great depth in an article on Blood Testing Protocols. Please review that info as well.
There are some physical indicators that may help you. More so if you are reactive, or highly reactive to the cold. Things you can monitor when you can’t run to the Doctor on a moment’s notice. When waiting more time for blood test result, may cause more serious medical issues. Or when scheduling a Dr appointment for a problem in which the next available appointment ends up too far out into the future.
For some, the 3 observations listed might help you make a decision to go to the ER of a hospital, or wait it out? For others without the luxury of medical insurance to cover expensive testing, the below 3 guides may be helpful in making choices that have financial repercussions? But be aware things other than CAD can mimic the same symptoms. Seek professional medical attention when necessary, or when in doubt.
With my wife we watch for the following 3 stages. This is based on dealing with her CAD over 20 years. Also watching it morph from pretty minor in the beginning. To more severe 20+ years later.
It has been a long and difficult journey between those two points in time. But our mental health is better knowing what to expect. Things that seem to repeat in cycles nearly every year. Especially in the cold weather seasons.
Long term affects of constant or accumulative exposures and reactions in the form of Hemolysis may lead to organ damage, Neuropathy, and who knows what else?
Marilyn is 60 years old (2019), and has dealt with CAD about 20 years. She is not diabetic. But she has started noticing Neuropathy in her fingers. Over the years with CAD I have often seen her fingers turn blue, to nearly black, due to cool/cold exposures. We feel the Neuropathy is related.
She had to have her Gallbladder removed about 20 years into CAD. Many CAD’s report they have either had to have their Gallbladder removed, or they are currently experiencing issues with theirs. Whether this percentage is the same as the general population. Or perhaps higher? Possibly pointing to CAD, or years of excessive CAD Hemolysis playing a factor. Remains to be seen.
Stage #1 or Minor but needs to be eliminated. Don’t keep repeating it! Short term with consecutive reactions, may cause accumulative harm. In the form of a lowered Red Blood Count. Long term it may cause issues later in life? You need to identify the trigger and make lifestyle changes.
Stage #2 or Definitely a problem. This is most likely causing immediate harm and perhaps longer term issues? You need to identify the trigger and make lifestyle changes.
Stage #3 May indicate a blood test needs performed as soon as possible and/or need to seek professional medical attention as soon as possible. In the case of my wife, she has standing blood test orders from her Dr. She can go on her own to the hospital as an out-patient for blood testing, at any time. Basically the Dr supplied her with a stack of signed blood testing forms that are already filled in for specific tests.
Stage #1 Observation – Minor
Darkening nose, toes, fingers, tongue/lips exposed to external cool/cold air, water, etc. Or to exposures to internally taken cold foods, drinks, etc. While this darkening normally starts on an extremity.
This can appear on any skin area in general. Including the lips or tongue, arms and legs. This can also appear as spots/discoloration, rash, or hive like reactions that appear related to cold exposure.
Darkening seems to be a common indicator with many CADs. That your blood is reacting to cold temps. This is the beginning of Hemolysis because your blood is clumping, or thickening (Agglutination taking place) because of your Agglutinin level and the fact it is cold reactive. [If this is CAD related].
You need to reverse cold exposure as soon as possible, and warm the affected area.
Practicing prevention 100% of the time, is better than trying to react to this after the exposure. Your body may not be able to generate new Red Blood Cells (Retic) as fast as they were just destroyed.
You can’t approach this from the point, “since it doesn’t hurt or feel uncomfortable, I can just warm up my nose or my fingers in a little while”….and everything will be fine. You may start a slid toward becoming anemic, or more seriously anemic.
Early on, my wife didn’t know she was CAD and cold reactive. We noticed her nose and fingers turned slightly dark in the cold. She often continued on. There was no pain. After all, life, jobs, etc all demand things too. Fast forward 20 years with CAD and around 60 years old, she is showing signs of neuropathy in her fingers and toes. She is not diabetic.
Stage #2 Observation – Definitely a problem
Urine turning dark [Brownish not Red]. Stage 1 symptoms may be present or was recently present.
Dark urine [more of a brown, not red] could indicate your body is processing more than a normal amount of dead red blood cells. [Hemolysis]. Often in a CAD that is reactive, this follows exposures to cold that your body can’t handle. You need to avoid whatever triggered this! ….at all costs. For your urine to turn darker than normal, your cold exposure was way too long, or repeated too often recently. The dark urine may mean you may have lowered your blood count.
Excessive Hemolysis can be hard on some of your organs.
Dark urine often follows within an hour or two of the exposure event….Again…if this is CAD related.
Drink plenty of fluids to flush yourself. If dark urine continues, [more of a brown, not red] seek medical attention. It should go away the next time or two you have to urinate. Even if it goes away, you need to take personal preventative action to avoid this trigger/cause in the future.
If this happens you need to retrace your time line and try to identify the trigger. For highly cold reactive people this can be something as simple as eating ice cream or downing an iced drink. Whatever the trigger is, you need to adjust your lifestyle to eliminate that trigger in the future.
Stage #3 Observation – You most likely need to seek medical attention
Whites of eyes becoming opaquely white. Or your skin or hands may look overly devoid of color. Also stage 1 & 2 symptoms may still be present, or present recently.
When the whites of the eyes appear opaquely white, with no signs of even very fine blood vessels. This could be an indicator you are anemic.
One of your loved ones should know how the whites of you eyes look when you are normal. Then help you monitor yourself when there may be a problem.
You can pull your lower lid slightly down and roll the eye up some, to take a visual look. You should see a normal eye. Normal for you.
Lack of any small visible blood vessels in the whites of your eyes, especially the outer perimeter, may indicate you are becoming severely anemic. This symptom is very obvious if you have paid attention to your eyes when you are well.
This can happen without the prior 2 physical signs ever showing up. More in the case of perhaps a virus exposure? Since CADs have a compromised immune system. A virus triggered anemic event can happen in a very short time frame. This “opaque eye white” symptom may come on with, or without. a lesser cold exposure warning.
In the case of a virus exposure, and a cold exposure in conjunction with it. Becoming anemic, or more anemic, can be accelerated.
Falling Hemoglobin and severe anemia can lead to requiring blood transfusions. If you are in this stage, other symptoms are most likely present. Tired, Headache, Scalp tingles or feels weird, short of breath, elevate pulse rate, or you pass out.
In my wife I have seen this twice. On both occasions her blood count was so low she was admitted to ICU and given multiple units of blood. On both occasions she was dealing with a virus, not a cold temperature exposure.
The virus triggered a shut down of her bone marrow/red cell production. Her Retic count should have been rising as her red count was going lower (going anemic).
In her case her “Retic Count” was going down as well as her Hemoglobin/Red cells going lower. So not only were her Red Cells dying off, they weren’t being replaced.
Two of several know causes of this in a CAD patient, is Parvovirus B19 and Mononucleosis virus.
Bone Marrow/Red Cell Production, is measured via a blood test [“Retic” or Reticulocyte Count] Another blood test term to familiarize yourself with. You will see comments about it in FB Group posts.
CADs with Hemoglobin/Red Cell levels that are falling, or have lower than the “normal” range. Those CADs often report headaches, no energy, body aches.
If you are cold reactive you will learn with time that any long period of time feeling like tired. dragging, or an extended time with a headache. This may require you to seek medical attention. Or at a minimum a blood test to check your Hemoglobin/Red Cell blood count, and perhaps your Retic.
This is where your baseline blood test, recorded when well, or reviewing a series of results you have kept, come in handy. If you have been taking monthly or quarterly blood tests you can see for yourself if you are stable, or in a falling state. Things to help you decide if this is serious enough to have someone take you to the hospital or at least seek some type of more immediate medical care.
Often a CADs “so called normal for them” …… their Red Blood Cell count. Is below the normal range of a healthy patient. So a small drop in a CADs Red Cell Count may have a far greater impact on how the CAD functions or feels.
This is where your baseline tests when feeling good, are beneficial for use as a comparison.
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