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Lupus - Trying to find answers

Expert: Cynthia Donlan - 12/3/2008

Question
Hi. I am a 24 year old female and am just trying to figure out what could be going on. I went to my PCP about a year ago for feelings of fatigue, having trouble concentrating and just not feeling right. She ran a few blood tests and said I had an iron deficiency and was put on a supplement. Over the past year I have been experiencing some symptoms which may or may not be related but include: fatigue, depression, joint pain in my knee, headaches, back, neck & shoulder aches (a clicking has developed in my shoulder), a "pins & needles" feeling that leads to some numbness in my arms & legs that has woken me up at night, sharp pains that shoot through the left side of my chest, when it's cold out - a couple of fingers (from the tip to the first knuckle) will turn yellow-white and become numb & cold, my weight is normally around 120 - I am now at 107lbs, I have gotten severe muscle spasms in my feet that last for 5-10 minutes, and in the past 2 months I have noticed thinning hair loss. In the past year I've also developed numerous ovarian cysts on both sides that have caused some lower abdominal pain, which my OB/GYN finds strange because I have been on Ortho-tricylen which usually prevents the development of cysts. Because of all this, I went to my PCP this past November and she ran some blood tests. Of all the tests, there were two that came back abnormal - the ANA came back positive at 1:640 speckled and Ferritin test came back at 15ng/mL. My known family history includes a mother with fibromyalgia & arthritis and a father who has arthritis and gout. I went to see a lupus specialist who did not run any additional tests, and simply asked me if I had ever developed a rash on my face (which I haven't). She said because I don't have the rash I don't have lupus and to ignore the ANA result, that I was just stressed. My PCP was appalled at this and has subsequently scheduled me to see someone else and scheduled me to have an echocardiogram, which I did this morning. I'm just looking for any opinion you might have as to what could be going on and if there's anything I should be knowledgeable to ask about for this next appointment.

Thank you very much for any help you can offer.

Answer
•   Dear Allison:
•
•   Let me begin by apologizing for taking so long to respond to your email. I do care and I know what it is to be sick,frustrated and waiting for answers.
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•   The reason why it took me so long is that I had to brake my computer system apart the other day because we are getting repair work done on our house and my bedroom was part of the project. So the time I got hooked back up, I noticed your message pending but I am here now.
•
•   Please keep in mind I AM NOT A DOCTOR just a woman who runs a local support group, who has many autoimmune issues and who reads alot and attends as many workshops as she can.
•
•   When i read your letter I noticed you have alot of stuff going on.
•
•   The first thing I want to ask you is how long have you been on the Ortho Tri Cyclen? Because after doing research I noticed that many of your symptoms come as Side effects from the drug. These are the ones listed below.
•
sudden numbness or weakness, especially on one side of the body;
•   sudden headache, confusion, problems with vision, speech, or balance;
•   chest pain or heavy feeling, pain spreading to the arm or shoulder, nausea, sweating, general ill feeling;
•   a change in the pattern or severity of migraine headaches;
•   nausea, stomach pain, low fever, loss of appetite, dark urine, clay-colored stools, jaundice (yellowing of the skin or eyes);
•   swelling in your hands, ankles, or feet; or
•   symptoms of depression (sleep problems, weakness, mood changes).
Less serious side effects may include:
•   mild nausea, vomiting, bloating, stomach cramps;
•   breast pain, tenderness, or swelling;
•   freckles or darkening of facial skin;
•   increased hair growth, loss of scalp hair;
•   changes in weight or appetite;
•   problems with contact lenses;
•   vaginal itching or discharge;
•   changes in your menstrual periods; or
•   headache, nervousness, dizziness, tired feeling.

As you can tell many of these side effects fit a lot of your symptoms. Yet do not stop the medication until you call your doctor. Tell him that this may be a possibility. Sometimes life’s answers are the simple things that dance under our noses. We look for more complicated reasons and there may not be one.

Many medications can cause false positive test results and skew lab work and affect our blood counts, so I would go that route first.

The next thing I would pursue is how is my endocrine system working. Many of the symptoms you are describing have an endocrine tone to it. Our thyroid, Ovaries, Pituitary gland and adrenal glands are all apart of our endocrine system.

Hair loss, anemia, muscular cramps fatigue, headaches, mood swings, etc can all come from problems in the thyroid, pitutitary or adrenal glands.

A thyroid panel, Cortisol and Acth level along with whole PTH should be checked on you.

Also you need to find out if you have polycystic ovarian syndrome? Many a time the cycts that develop from that condition do not clear up or are exacerbated by Pills. THIS IS AN ENDOCRINE condition? How is your blood sugar? Have you been checked for diabetes.

A lot of times woman with cystic issues also develop insulin resistance?

How is your diet? Are you a vegetarian or a vegan? DO you go to the bathroom a lot? Do you have diarrhea? Has you electrolytes been checked ( potassium, Sodium, chloride)? Muscle cramps and headaches can come from something as simple as dehydration. Do you drink enough water?

Another deficiency which can cause these kind of symptoms and is not checked for frequently is Magnesium. Magnesium deficiency can cause ah of problems from migraine headaches, to insulin resistance to heart arrythmias to emotional problems and yes there has been reports of it even causing ADHD like symptoms.

I can attest for this because before I started taking magnesium supplements I got severe migraine headaches and my sugars were in the 400 range. Now they still go up but only as high as 180 typically.

PLEASE however contact your doctor first before you start popping pills, certain meds react with over the counter stuff and if you do not need certain supplements they can be toxic in your system. Each case is different. I suggest that you get your magnesium level checked.

Another question I have for you is have had a b12 level done on you? Did they ever check you for Pernicious Anemia? The name makes it sound more dangerous then it is.

Pernicious Anemia is an autoimmune condition caused by a deficiency of Vitamin B-12 that is needed for normal production of red blood cells.
It is often hereditary.
The foods that contain Vitamin B12 are meat and dairy products. However except in strict vegetarians, this disorder is not a result of not eating enough of these foods.
Rather, Pernicious Anemia results from the failure of the digestive tract to absorb Vitamin B-12.
After being ingested, B-12 binds with a protein called Intrinsic factor, which is secreted by parietal cells which line part of the stomach.
Without Intrinsic factor, Vitamin B-12 remains in the intestine and is excreted into the stool.
In Pernicious Anemia, the stomach doesn't produce intrinsic factor; Vitamin b-12 isn't absorbed and anemia develops even if large amounts of the vitamin are consumed.
B-12 Anemia doesn't develop until 2 to 4 years after the body stops absorbing the B-12.
This condition is NOT common and occurs typically in older people over 50.
To check for Pernicious Anemia, your physician can perform various blood tests. One test measures the amount of B-12 in your blood. Others test
Whether you have antibodies to your Intrinsic factor and or Parietal cells.
This chronic disease progresses slowly but steadily if not treated!
WEAKNESS especially in arms and legs
SORE TONGUE
NAUSEA
APETITE LOSS
BLEEDING GUMS
NUMBNESS & TINGLING in hands and feet
CLUMSINESS
PALE LIPS
PALE GUMS AND TONGUE
YELLOW EYES AND SKIN
SHORTNESS OF BREATH
DEPRESSION
CONFUSION & DEMENTIA
HEADACHE
POOR MEMORY
One of the most unusual symptoms of this disorder, which happens occasionally, is bizarre color blindness where the person cannot differentiate between yellow and blue.
Replacement Therapy with adequate amounts of
B-12 corrects the deficiency and allows a normal life. However if the condition progresses for a long time before detection, it may cause damage to the nervous system.
The treatment of Pernicious Anemia consists of replacing B-12.
Because most people who have this deficiency can't absorb B-12 taken by mouth, they must take it by injection. People who have this deficiency must take these injections monthly for life!
A small price to pay when you consider brain damage & death as your options!

The fact that you have a low ferritin level may be an idication of Iron deficiency anemia
IRON DEFICIENCY ANEMIA: is the most common type of anemia, it affects anyone of any age who has a low diet of iron, or has lost o lot of red cells ( and the iron they contain) through bleeding or from malabsorption issues.

Iron deficiency anemia is due to insufficient iron. Your body needs the element iron to make hemoglobin, a substance in red blood cells that enables them to carry oxygen.
Iron deficiency anemia is common, especially in women. One in five women and half of all pregnant women are iron deficient. Lack of iron in your diet is one cause of iron deficiency anemia, but there are other causes as well.
You can usually correct iron deficiency anemia with iron supplementation. Sometimes, additional treatments are necessary, especially if you're bleeding internally.
In general, anemia causes extreme fatigue, pale skin, weakness, shortness of breath, headache, lightheadedness, and often cold hands and feet.
Iron deficiency anemia symptoms also may include:
   Inflammation or soreness of your tongue
   Brittle nails that are spoon shaped
   Unusual cravings for non-nutritive substances, such as ice, dirt or pure starch
   Poor appetite, especially in infants and children with iron deficiency anemia
Some people with iron deficiency anemia experience restless legs syndrome — an uncomfortable tingling or crawling feeling in your legs that's generally relieved by moving them.
Iron deficiency anemia causes include:
   Blood loss. Blood contains iron within red blood cells. If you lose blood, you lose some iron. Women with heavy periods are at risk of iron deficiency anemia because they lose a lot of blood during menstruation. Slow, chronic blood loss from a source within the body — such as a peptic ulcer, a kidney or bladder tumor, a colon polyp, colorectal cancer, or uterine fibroids — can cause iron deficiency anemia. Gastrointestinal bleeding can result from regular use of aspirin or other nonsteroidal anti-inflammatory drugs (NSAIDs). While not common in the United States, hookworm infestation can cause blood loss.
Blood lost from within the body may show up in your urine or stools, producing black or bloody stools. Inform your doctor if you notice blood in your urine or stools.
   A lack of iron in your diet. Your body regularly gets iron from the foods you eat. If you consume too little iron, over time your body can become iron deficient. Examples of iron-rich foods include meat, eggs, dairy products or iron-fortified foods. For proper growth and development, infants and children need iron from their diet, too.
   An inability to absorb iron. Iron from food is absorbed into your bloodstream in your small intestine. An intestinal disorder, such as Crohn's disease or celiac disease, which affects your intestine's ability to absorb nutrients from digested food, can lead to iron deficiency anemia. If part of your small intestine has been bypassed or removed surgically, that may affect your ability to absorb iron and other nutrients. Some medications can interfere with iron absorption. For example, regular use of prescription-strength stomach acid blockers called proton pump inhibitors may lead to iron deficiency anemia, although this is unusual. Your body needs stomach acid, which these products suppress, to convert dietary iron into a form that can readily be absorbed by the small intestine.
   Pregnancy. Without iron supplementation, iron deficiency anemia occurs in many pregnant women because their iron stores need to serve their own increased blood volume as well as be a source of hemoglobin for the growing fetus. A fetus needs iron to develop red blood cells, blood vessels and muscle.
Screening and diagnosis
Doctors diagnose iron deficiency anemia mainly through blood tests. These may include tests to examine the size and color of your red blood cells. With iron deficiency anemia, red blood cells are smaller and paler in color than normal.
Your doctor will check your hematocrit — the percentage of your blood volume made up by red blood cells and hemoglobin. Normal levels of hemoglobin range between 11.1 and 15.0 grams per deciliter (g/dL). A lower than normal hemoglobin level indicates anemia. For women a low level is less than 10 g/dL, and for men a low level is less than 12 g/dL.
In addition, blood tests for iron deficiency anemia typically include a measurement of ferritin, a protein that helps store iron in your body. A low level of ferritin usually indicates a low level of iron.
Additional diagnostic tests
If your blood work indicates iron deficiency anemia, your doctor may order additional tests to identify an underlying cause. If your doctor suspects a source of bleeding within your body, you may need to have your stools tested for traces of blood. Blood in the stools is often an indicator of internal bleeding.
You may need these additional diagnostic tests:
   Endoscopy. Doctors often check for bleeding from a hiatal hernia, bleeding ulcers and stomach bleeding with the aid of endoscopy. In this procedure, a thin, lighted tube equipped with a video camera is passed down your throat to your stomach. This allows your doctor to view your esophagus — the tube that runs from your mouth to your stomach — and your upper stomach to look for sources of bleeding.
   Colonoscopy. To rule out lower intestinal sources of bleeding, your doctor may recommend a procedure called colonoscopy. A thin, flexible tube equipped with a video camera is inserted into the rectum and guided to your colon. You're usually sedated during this test. A colonoscopy allows your doctor to view some or all of your colon and rectum to look for internal bleeding.
Your doctor may order these or other tests after a trial period of treatment with iron supplementation.
Once you become deficient in iron to the point you develop anemia, increased intake of iron-rich foods is beneficial, but usually isn't enough to correct the problem. You need iron supplementation to build back your iron reserves, as well as to meet your body's daily iron requirements
Iron can irritate your stomach, you may need to take the supplements with food. Your doctor may recommend that you take iron supplements with orange juice or with a vitamin C tablet. Vitamin C, in orange juice or tablet form, helps increase iron absorption.
Iron supplements can cause constipation, so your doctor may recommend a stool softener. Iron almost always turns stools black, which is a harmless side effect. Iron can be given by injection, but this usually isn't necessary.
Iron deficiency can't be corrected overnight. You may need to take iron supplements for several months or longer to replenish your iron reserves.

People with autoimmune disease such as lupus or arthritis can develop one or both types of anemias.

Let me continue by saying you are not crazy! You are sick and reacting to something. The problem is what?

The fact that you have a speckled ANA of 640 says that something is definitely going on.
The fact that your family history shows both a mom and dad with arthritis also makes for a better argument for an autoimmune disease to be brewing in your system.

Also woman who have autoimmune diseases specifically Lupus do not do well with brith control pills, so that also could be a further explanation.

Let me begin by saying to you that YOU DO NOT HAVE TO HAVE A RASH ON YOUR FACE TO BE DIAGNOSED WITH LUPUS.
Lupus is a designer disease and affects each of its victims individually.
According to the Mayo Clinic Signs and symptoms may come on suddenly or develop slowly, may be mild or severe, and may be temporary or permanent. Most people with lupus experience episodes — called "flares" — of worsening signs and symptoms that eventually improve or even disappear completely for a time.
The signs and symptoms of lupus that you experience will depend on which body systems are affected by the disease. But, in general, lupus signs and symptoms may include:
   Fatigue
   Fever
   Weight loss or gain
   Joint pain, stiffness and swelling
   Butterfly-shaped rash (malar rash) on the face that covers the cheeks and bridge of the nose
   Skin lesions that appear or worsen with sun exposure
   Mouth sores
   Hair loss (alopecia)
   Fingers and toes that turn white or blue when exposed to cold or during stressful periods (Raynaud's phenomenon)
   Shortness of breath
   Chest pain
   Dry eyes
   Easy bruising
   Anxiety
   Depression
   Memory loss

SO take the above information and run with it. Hang in there! It took me 15 years before I was finally given a proper diagnosis. Now I have excellent doctors on my case and could breath a little easier. Also make sure you pray! God is a very real and integral part of anyone’ s treatment plan! May God Bless you and your family this and every holiday.

Write me if you need more info,

Cynthia

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