Archive for the ‘anemia’ Category

For the last 2.5 years I’ve been dealing with symptoms that kind of mimic hypothyroidism. Considering during this time I was going into remission from Graves Disease, it was very difficult to find the route cause of all my ailments: dry hair (fluid imbalances), numbness and tingling, major water retention and swelling (mostly of the belly, but fingers, upper arms, face and legs, as well), fatigue, flank pain, nausea, incontinence, swollen veins, not to mention deficiencies in b12, iron, calcium, magnesium, and vitamin D.

It all started on my right side, shortly after losing a pregnancy. I was “diagnosed” with anxiety and when I quickly got pregnant again, the rest was blamed on pregnancy or “fibromyalgia”.

I have constant right flank pain. I thought, what they missed by stereotyping me as an “anxious hypochondriac woman” was that I had had a catheter when I lost the baby. My first symptom was incontinence.  I thought it must be a kidney infection. I also have a right subscapular echogenic liver cyst . Last ultrasound showed that it was gone.

I swell up every single night with a giant bulge above my belly button and constant flank pain to this day (2.5 years later). I now know to watch my fluid intake.  I will add some additional details after my doctor’s appointment tomorrow (Jan 26, 2013).

Ultrasound Update: So, I have dilated collecting ducts of the right kidney.  Obstruction? No mass – so hoping not cancer.

Update: CT scan came back “normal”. Back to the drawing board.  Now I have a goiter. Must by hypothyroidism (Graves disease is in remission)


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About two months ago, a blogger identified my symptoms as adrenal fatigue (thank you Bethanie).  After an extensive amount of research on my end (thank you Dr. Lam: www.drlam.com/articles/adrenal_fatigue.asp), I agree this fits my situation to a “T”. However, what it’s hard to glean from all of the literature is what does this really feel like in real life.

Update: interesting relationship between thyroid and adrenaline: Note: http://tiredthyroid.com/feeling-hyper-when-hypo.html Thyroid and adrenaline (epinephrine) have an inverse relationship. [1- 4]

My symptoms started with sudden sleep issues (up every night from 1-3 am). I had ringing in my ear at night. I had sudden urges to pee, out of no where!  When the thigh numbness started I worried, but when the face twitching/numbness started I outright panicked.  This was not good for me! If I had known what was happening, I probably would have spared myself a whole lot of damage. However, for the next 6 months I panicked about what was causing my weird numbness and tingling, watery diarrhea, and complete inability to nap or sleep.

You can read the whole saga under the blog “numbness & tingling on the right side”.  Over a year later I am still suffering the same symptoms, however, to a lesser extent. Knowing (or at least thinking I know) what is going on with me makes it much more manageable and much less stressful.

Main symptoms

  • starts with my right thigh – goes tingly, then both thighs, then my upper arms go tight and sore.
  • My skin is often cold (even to the touch).
  • Alternating sweet cravings and salt cravings
  • sudden urges to pee
  • right eye twitching
  • mild edema all over (worse at times), noticeable in my legs, face (chin), upper arms and stomach. It almost looks like I suddenly get cellulite in my stomach and legs but it’s just water and goes away.  My upper arms get water-logged and a little jiggly, but goes away.
  • wrinkly hands and fingers, like they’ve been soaked in water for hours
  • some days I have really bad fatigue (the swollen days), but on the tingly days my energy is fine.
  • I get lots of muscle cramps and aches
  • photo-sensitivity comes and goes
  • I believe a lot of my symptoms are due to macro-mineral issues: calcium/magnesium balance, sodium/potassium balance. However, my willy-nilly taking of vitamins doesn’t get the balance right.
  • Cycles used to take months, but it now takes about 1 month to cycle through these symptoms.
  • I’ve gained weight, in my stomach and face, despite typically gaining it in my lower body. Ugh.

The biggest lessons I’ve learned:

  • I try to stay calm and take hot baths before bedtime, read my book and fall asleep with no lights and no TV on in the room.
  • I do take B vitamins (b12 helps with energy), iron (Euro-Fer/Palifer), magnesium, vitamin C and vitamin D. I’m not religious about it like I used to be. I took a bottle of Milk Thistle until I finished it. I am feeling better, though not cured.
  • When my muscles are really crampy I do take calcium and it does help. I’ve been told that it shouldn’t, but it really does help when all of my muscles are tight.
  • I used to live on cereal and now I try to eat more protein. In fact, I’ve read that limiting carbs is the fastest way to recovery. I hadn’t tried it (because I love carbs), but I am starting to ween.
  • When I’m tingly and cold beta-blockers help! I get weird muscle cramps in my upper arms and cold spots all over the body, and I suspect it’s caused by vasoconstriction (epinephrine?) because beta-blockers make this better. However, if I take too much beta-blocker I get light-headed and sweaty.
  • I tried playing competitive volleyball again, but it was at night and my muscles cramped up afterwards and I was easily rattled (embarrassing – I got emotional on the court and that is soooo not like me!). It’s recommended to exercise in the morning and not too intense.
  • Stuffy nose when I lay down only. As a result, I wake up with a sore throat. Not sure if it’s reflux or post-nasal drip.

Here’s hoping normal is not too far away!

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If you’re reading this blog for the first time, read “Numbness and Tingling on the Right Side” first and work your way up.

Quick synopsis: In January 2011 I started getting weird symptoms which started with numbness in right thigh and right cheek. I also had a slew of other symptoms: tingling, silent-migraine-like episodes, tingling, especially in the thighs, tight, spastic muscles.  Tested negative for Rheumatoid arthritis, lupus, celiac, MS (my MRI just came back clean).

I have high ESR, CRP and was deficient in B12, calcium, ferritin, magnesium and had bad anemia, which peaked in July 2011.

I’ve seen a rheumatologist, neurologist, endocrinologist and as of today, a gastroenterologist!  The rheumy insists it’s fibromyalgia (FM), but since treating my vitamin deficiencies, I don’t have trouble sleeping, and I’ve never had wide-spread pain or ANY tender points. Also, inflammation is not a symptom of FM.

I’ve been taking ibuprofen for 1.5 weeks and it helps with the constant aching in my upper arms. I have occasional spastic muscles (jaw, traps (shoulder), calf muscle and mid/lower back). My hips often are achy. I don’t think this sounds like FM, but maybe I’m wrong? Also, I have mild swelling all over my body. Slight pressure seems to cut off my circulation – like when sitting, or putting my feet up, tight elastics on shirts, etc…  Swelling isn’t terrible but I look puffy and bloated – just glad it’s winter time!

Next step: having upper and lower gastrointestinal tract (GI) scopes/colonoscopy.

On a positive note, my daughter was born this past November. Perfectly happy and healthy and is a pure joy through all of this. Still feel quite blessed that I don’t appear to be dying and have a beautiful little girl to show for all my trouble.

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For a couple of months I had been experiencing pain on my right side, under my ribs, wrapping around to my back.  I had an ultrasound done at 34 weeks to investigate, as my symptoms sounded like gall bladder disease / gall stones.  Everything looked normal except for a “1.0 cm right subscapular echogenic area, likely representing a liver hemangioma.” Well, that is where my pain is, however, the report noted that “No cause for patient’s pain is identified.”

From what I’ve read on the internet, other people have experienced pain there, mimicking gall stones, only to be told it’s a liver hemangioma, and that it shouldn’t be causing pain. Several people also noted that they have IBS (irritable bowel syndrome), which I have been told I have due to years of constipation and bloating (basically since birth).

Recently, in January 2010, I started getting other weird symptoms like numbness and tingling. After 6 months of seeing 8 different doctors, including the emergency room at the hospital, an endocrinologist (I have Graves disease), a neurologist (for the numbness & tingling), and a rheumatologist (who told me it was fribromyalgia, which it isn’t), I was finally diagnosed with vitamin B12 deficiency (it was 115 at the time), low calcium (hypocalcemia), and low ferritin (anemia). The current hypothesis is malabsorption and I go to see a gastroenterologist in February, and I’m getting an MRI just to rule out anything else (Jan 2012 – completed – came back clean.)

So, after 3 months of supplements with vitamins I find I still have malabsorption issues (diarrhea), despite many pills a day:

  • 2 mg+ Calcium
  • 4 IU vitamin D
  • 1-2 Iron pills a day (Palifer/Euro Fer)
  • Vitamin C (I take with iron, and now with each meal as I read it can help with malabsorption)
  • B12 (sublinguals and injections)
  • prenatal vitamin
  • B complex vitamin
  • 1 magnesium pill

I suspect that my history with IBS could be caused by low stomach acid (hypochlorhydria ). It is interesting that the low vitamins happened less than 2 years after my Graves disease diagnosis, which makes me wonder if any of it is autoimmune. Pernicious anemia (low b12) can be caused by an autoimmune disorder, but doesn’t explain the low calcium.  Updated Jan 2012 – I feel fairly certain it’s adrenal fatigiue/insufficiency

So, until I have this baby (less than 4 weeks to go!), and until I see a gastroenterologist (3.5 months from now), I just have to keep taking vitamins, ignore the pain under my right ribs, and hope that it’s all treatable in January!

I know a scope of my stomach and colon is likely in my future, but if it produces the cause of my symptoms (hopefully, all benign), then I’ll be happy. However, I am disappointed that it is taking so long to diagnose. It’s already been 9 months since the onset of my symptoms and it will be over a year before I see the gastroenterologist (it took 3 months of supplements not making much of a difference, and even then, I had to ASK to see one).

Note: my Graves Disease has been perfect throughout pregnancy. I take a pill at breakfast (50 mg), and another pill at bedtime (50 mg). I will let you know if it flares up after birth, but so far, so good!

Post-Birth update

About a week after birth my calcium levels seem to be off. I feel very hypocalcemic, however, I’m taking more calcium than ever (up to 4,000 mg / day). My lips are tingling and my muscles get crampy. However, I’m prone to constipation right now – well, large, firm stools right now, which is odd because I’ve had fibrous, slimy bowel movements leading up to birth, despite the calcium and iron I’m taking.

Update: Jan 2013

Still have constant flank pain in this region. Kidneys look okay. Think this might be the source of all my problems – liver cyst.

Liver cysts are usually asymptomatic, and most people having them are unaware about their condition. It is found that less than 5 percent of people with hepatic cysts develop noticeable symptoms. Also, the benign sacs don’t affect the normal functioning of liver. When the cysts grows larger to about 7 cm, or if there is bleeding inside the cysts, then only they cause symptoms. Bleeding into the cysts is characterized by sudden pain in the upper right abdomen. Symptoms associated with hepatic cysts include the following.Upper abdominal swelling and discomfort
Abdominal pain
Nauseated feeling
Eruption of the cysts
Digestive problems
Shoulder pain
Liver enlargement
Blockage of bile ducts
Infection of the bile ducts

Diagnosis and Treatment

Diagnosis of liver cysts is done when a patient undergoes a CT (Computed Tomography) scan or an ultrasound procedure of the abdomen. Usually, they are detected incidentally, while doing imaging tests for other abdominal problems. If required, examination of a sample of fluid from the cysts, biopsy of the affected tissues and blood test (for parasitic infection cases) is conducted. It is common that an individual has more than one cyst in the liver tissues and rarely, there are multiple cysts.

Since liver cysts don’t disturb the normal functioning of the body, there are no significant treatment methods. In case, the cysts are big enough (for example more than 3 cm), it is advisable to go for a follow-up abdominal imaging to check the growth of cysts. People go for treatment of liver cysts only after they experience discomfort symptoms that disturb their normal routine. Treatment for the same is done by aspiration and/or surgical removal of the cysts.

Of the two available treatment methods, removal of the cysts via laparoscopic surgery is a more reliable intervention. Simple aspiration of the cysts is not recommended, as fluid tends to fill up the cysts after some time. In the surgery, 2-3 small excisions are made in the abdomen. With the help of laparoscope, a large part of the affected tissues including the cyst wall is removed, and the incisions sites are sutured. Laparoscopic surgery is also recommended, if the cysts prevent normal flow of bile juice to the small intestine.

This minimally invasive procedure requires 1-2 days hospital stay. Usually, candidates achieve full recovery within 2 weeks after the surgery. As the liver regenerates on its own, it recuperates successfully. In case, the cysts are infected, then treatment may include administration of antibiotics and other prescribed medications along with excision of the tissues and cysts. For people who have participated surgery for hepatic cyst treatment, recurrence rate is very low (almost negligible).

To conclude with, no specific treatment is needed for asymptomatic liver cysts. However, one should be aware about the complications of liver cysts, such as infection, jaundice (yellowing of the skin and sclera), bleeding into cyst (causing pain) and disturbance of the flow of bile juice. If anybody suspects that he/she has liver cysts, it is recommended to consult and seek advice from a physician so as to get proper medical attention. Except for the mild discomfort cases, hepatic cysts do not pose risks for liver cancer and liver failure.
Read more at Buzzle: http://www.buzzle.com/articles/liver-cysts.html

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I haven’t posted about my pregnancy in months because my life had been consumed by my mystery illness, which was diagnosed a severe b12 deficiency, anemia and hypocalcemia at the end of June.  Even though my symptoms started before I got pregnant, they wrote off all of my symptoms due to pregnancy or anxiety.  After a month of  treatment, I’m starting to feel better, but I’m far from back to normal.

At night time, my legs ache and spasm slightly, I sweat like crazy and I can’t sleep. I still notice mild swelling throughout my body, but it’s so much less than it used to be.

My Graves Disease has been perfectly controlled – nice that something in my body is working – or at least responding approapriately to the drugs.  My TSH is hovering around 1.7.  However, when I get palpitations due to anemia, it triggers old feelings of needing more PTU.

The baby is very active, which is comforting. I’ve had 3 ultrasounds that show she is growing normally, which I find hard to believe due to everything I’ve been through. I have one more ultrasound in August. Maybe then I will be able to enjoy the last weeks of pregnancy. Up until now, I’ve just not let my mind focus on it because I was so afraid for myself, and couldn’t imagine the baby being okay.

I’m just looking forward to my next blood test in two weeks. I want to know where I’m still low so I know what to focus on to feel better. Right now I feel about 60% better after a month of treatment. I crash every night at 6:00 pm – can’t nap, and I don’t sleep well.  My achy moments are distracting, but at least I can do stuff during the day now, whereas before I was too tired, or crashed for a lot longer after any exertion.

(updaed Jan 2012 – I think I have adrenal insufficiency)

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So, I’m not sure how long I’ve had pernicious anemia, but my weird symptoms started in January.  I wasn’t tested for b12 deficiency until June! I was diagnosed with fibromyalgia by a rheumatologist (no blood test, told me tight muscles and insomnia were fibromyalgia), a neurologist didn’t know what I had (and didn’t do a blood test), and my family doctor thought I was anxious and a hypochondriac.

I am writing about it because I researched my symptoms obsessively for months and never came across a detailed description of what I was feeling. I always came across those overly vague and generalized pages that didn’t sound like what I was going through. No one mentions the veins, but they were one of my first signs!

Note: autoimmune diseases and thyroid disease put us at increased risk for B12 deficiency! If you feel tingly or “different” it might be worth it to ask your doctor to test your levels. 300-400 is borderline and you should start supplementing. Under 300 will cause symptoms and you should be treated immediately. If you’ve lost blood or had surgery, make sure you’re tested for B12 and anemia right away, symptoms or no symptoms. I also now think I have adrenal insufficiency! Too much cortisol (from stress) causes vasoconstriction, which can lead to numbness. Too little cortisol (adrenal insufficiency) causes widespread vasodialtion!

When my family doctor finally tested my levels, my B12 level was 115, I was severely anemic with extremely low ferritin, and hypocalcemic. After 2 weeks of supplementation, these were my blood results (green numbers are better than the red ones):

  • Calcium: 2.15 up from 2.08 (2.15-2.60)
  • B12: 215 up from 115 PMOL/L  after B12 injection (>200, although most recommend over 400)
  • Anemic (low iron),
    • hemoglobin: 113 down from  117 G/L (115-165)
    • hematocrit:  0.33 down from 0.38 L/L (0.37-0.47) &
    • RBC count: 3.46 down from 3.7 (3,8-5.8)
    • Ferritin: 13 up from 10 (11-145 UG/L)
    • MCH: 32.6 up from 31.6 (27-32) (macrocytic)
  • Low Albumin 34 down from 36.0 G/l (35-50)
  • Low Creatine: 52 up from 46 UMOL/L (60-115)
  • High ESR (inflammation): 20 down from 34 MM/H (0-12)

My main symptoms were numbness and tingling. However, some of my own weirder symptoms included:

  1. I actually think the weird sleep patterns were my first sign. I would wake up every night at 3am. Eventually I wouldn’t be able to nap despite extreme fatigue and would wake up a thousand times at night. Currently, I get hot flashes and sweating at night – I’ve always been cold at night so this is totally new.
  2. Tinnitus: I would read before bed and would often notice ringing in my ears
  3. Mild incontinence. Sudden urges to pee with mild “leaking”, even before the tingling started.
  4. Suddenly, I had right-sided numbness and tingling and muscle spasms. First my right thigh, then my right jaw, with tight spots on my right neck, left trapezius, and right side of my middle back. I wasn’t in much pain at first. It was mostly numbness
  5. Bright blue, tender, swollen veins throughout body, especially chest, thighs, hands and feet. This was one of my first signs that started around the same time as the numbness. Perhaps related to elevated homocysteine levels caused by low B12. (Big, blue, tender veins)
  6. Diarrhea that came and went in bouts (of weeks or months). The first two months of symptoms I had watery stools every day.
  7. Complex/silent/hemiplegic migraines – a wave of numbness in my face, thigh, or stomach for 15 minutes to 2 hours. During this time the area would be very heat/cold sensitive. After it was over I would have a wave of chills and severe headache and fatigue.
  8. I would often crash at 7pm at night. I never really slept soundly, but would lay in a comatose-like state. At night I would wake up a million times and never felt comfortable.
  9. I had achy hips and sciatica-like symptoms. At one point I had “heavy leg syndrome”. A massage of my numb thigh made my whole leg ache for 2 days. I shoveled the driveway and got severe sciatica symptoms – pain down my right leg and it felt like the circulation was poor.
  10. Finally, I had numbness and tingling on both sides of my body (after 2 months of mostly right-sided symptoms). My upper arms and hip/thigh regions were the worst. At times it felt like I had ties around my shoulders cutting off circulation in my upper arms, although my lower arms and hands were fine!  It also felt like tight bands of muscle or nerves running down my upper arm.  My hips and legs were often tingly. Again, it almost felt like circulation problems and I kept researching “vein inflammation” (mostly because my veins were big, blue and tender from the outset)
  11. During this time I also had severe photosensitivity, with wavy peripheral vision. Sometimes I would close my eyes and still see the waves.  I still need to wear sunglasses even on overcast days. My eyes were very bloodshot. Driving at night-time, I noticed that street lights and car lights looked like flares (almost like when you have too much chlorine in your eyes from swimming).
  12. My feet are always tender in the morning and it takes a while for them to feel normal. They can feel swollen, burning, or just tender.
  13. My symptoms are worse at rest. The second I stop moving, everything seizes up. Night time is the worst. Tingling, restless legs, crawling sensations down my arms and legs. Fatigue. Heart palpitations.
  14. Edema: The areas where I had severe nerve inflammation would be mildly swollen. My upper arms were a little jiggly, like they were full of water. My legs would feel weird to bend because they were swollen and it really brought out the cellulite in my upper thighs. I also noticed it in my right jaw, where I often got severe pain and tightness. I have read this could be caused by iron-deficiency anemia, which often occurs with B12 deficiency.
  15. I got floaters in my vision
  16. L’hermitte’s sign: an electrical zap feeling, like you’ve been electrocuted (which is supposedly really rare, but my mom gets it too)
  17. Muscle fatigue. Maybe it’s the nerve inflammation or the anemia, but my arms would tire blow-drying my hair and stairs were difficult to climb (easily fatigued, not really weak).
  18. Severe heart palpitations and sudden weakness/light-headedness for apparently no reason. Sometimes it was so severe I felt I could hardly breath despite laying down.
  19. My mom has also had balance issues and vertigo, as well as brain fog (forgot her own phone number once and couldn’t remember how to get home from work on another occasion)
  20. Dry mouth: My lips were peeling and I often felt like my mouth was dehydrated
  21. Course, dry hair that started to fall out.
  22. Tight calves. I also had muscle cramps in my calves at night. I became hypocalcemic, which I’m sure contributed to this!
  23. Heartburn and acid reflux. This started of mildly and got worse.
  24. Weird muscle spasms in my sleep that would wake me up. They wouldn’t be the really painful calf cramps, these were more spastic.
  25. As my B12 came into the 200 levels, my numbness and tingling moved from my core (upper arms, spine, hips) down to the lower half of of my arms and hands, and my calves and feet, which hadn’t really been affected before the first B12 shot.
  26. Hives: While I didn’t have this symptoms myself, I have read that it is related to B12 and have a friend with both low B12 and occasional outbreaks of hives. (updated 2012 – I got hives!  Not sure if it’s related to low b12, but started getting them several months after this post)
  27. Severely dry hair and hands.
  28. Bloating in the tummy area after stress – like seriously jiggly, like I was retaining a bucket of water. Would wake up with a flat stomach but after the slightest stress, would bloat again! Weird.


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January 2011: So when my right thigh felt a little numb, I attributed it to the long walk in the snow I did the night before. “Must have a muscle spasm” I thought.  When the next day I got numbness in my face (twitching of the muscle between my jaw and eyes with a knot/hard ball on the jaw), yes, momentary panic, and then, “I have a really big knot in my back, leading to my neck. That must be it.”  When the symptoms continued overnight and I awoke with my entire right side feeling tingly, I freaked and went to the emergency room. Autoimmune disorders run in my family. I have a cousin with MS and to be honest, it is my biggest fear.


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