I was just informed I have CAD. Now What?

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I have CAD.  Now what?  


First of all, do you really have CAD?  A confirmed diagnosis?   Don’t jump to conclusion without confirmation by a medical professional.  This is a very rare disease.  

Did you recently give blood and receive some kind of notice of “Agglutination” present in your blood?  Is that why you are here investigating?

Some of the symptoms of CAD can mimic those of other diseases or health issues. 

Those in stages that CAD affects their health.  They are most likely dealing with some abnormal level of anemia.  The telltale factor of a CAD, is issues brought on by exposures to cooler or colder temperatures.  Some patients in early stages may not be aware of anything.

Many 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.  

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 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.   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 are totally different diseases, 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 the 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.

There are numerous forms of anemia that are not related to CAD at all.

There are specific tests to confirm a CAD diagnosis.  

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 over a 20 year period.   

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.  The attacks in the case of CAD, happens when the person is exposed to temperatures less than body temperature.   That reactive temperature point varies from CAD to CAD.  

Once the CADs Red Blood Cells begin to clump or bind together (Agglutination) due to that persons trigger temperature.  There is a premature die-off cycle of red blood cells.  This binding/Clumping does not occur in a normal person.  There is no difference in immediate feeling to know this is even occurring.  The after affects of the Red Blood Cells dying are what a patient will experience.  That will range wildly based on many factors such as how reactive a patient is, that cold temperature range, and the length of the cold exposure.

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 in a CAD is their Retic Rate. (the body’s Production of new Red Blood Cells)

Retic levels (new Red Blood Cell Production) is higher than normal in a CAD for the most part.  

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.  Associated with other names or abbreviations such as, Acquired Autoimmune Hemolytic Anemia or AIHA.

Other forms of Anemia may also come into play within a CAD during their course of dealing with CAD. 

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 decline a CAD may otherwise experience. 

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.

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, binding them together (Agglutination).  This agglutination destroys the Red Blood Cells.

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, and attempt to equate that to a specific air temperature trigger for said CAD….well that seems highly speculative. 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. 

Other tests are often run such as RBC/CBC, Titer, Coombs, IgG, and IgM, 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.  It is 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. 

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 breathe, 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 on the approach they take.  How insistent you are.  Or quite possibly it may be dictated by your health care insurance coverage?

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 bodies 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.

There are supplements such as Iron & Folic Acid. Vit D, Vitamin B-12 injections, etc, that may be beneficial. 

Many CADs report these help them maintain their general health and blood levels.  It may be related to a high Retic rate?  Iron and B12 may be used up faster than normal, with a higher Retic Rate?

But low iron could also point to Iron Deficiency Anemia.  Low B12 may point to Pernicious Anemia.   Other issues that are not Hemolytic Anemia.

So 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 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.  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.   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,  did a lot of other screening 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 cold 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.

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 Dr on a moments 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 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.

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.

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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.

Hemolysis is also hard on 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.  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.

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Further NOTES

 
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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