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Elevated CRP, Sed Rate, Platelets....

I'm 27 years old. My family doctor referred me 6 months ago to a hematologist for elevated platelets. I have had elevated platelets in the past, at least up to 6 years ago, at which point I was having petechiae spots on various areas of my body. Platelets were running 450-500 at the time. Nothing was done and I went a long time without having them re-tested.

When I saw the hematologist 6 months ago, tons of very expensive genetic tests were done to rule out blood cancers. Everything was negative, however I had an iron deficiency. She put me on an iron supplement and said this was probably why my platelets were elevated.

I went back 3 months later and my iron was still very deficient and I was having headaches, extreme fatigue, occasional shortness of breath, and some random pain in various areas. They checked my thyroid which was normal, then upped my iron to 3 times a day and prescribed me a daily baby aspirin due to the high platelets.

Afterwards I noticed in my patient portal that my Sed Rate had previously been reported as mildly elevated at 25. I had read that platelets may be increased as a result of inflammation, and knew that Sed Rate was an inflammation marker. I asked the nurse practitioner about it, and she said they might be related & reccomended rechecking it in 3 months, when they also plan to recheck my platelets. (I was told if my iron has improved but my platelets are still elevated at that point, they will perform a bone marrow biopsy/aspiration.) (I don't go back for another 5 weeks).

Meanwhile, I have seen my family doctor again for the symptoms I had gone back to my hematologist for- the extreme fatigue, headaches, feeling like I've been hit by a truck, occasional shortness of breath (the hematologist said was NOT related to my iron deficiency) My doctor prescribed me Wellbutrin for the stimulant effects and re-tested my Sed Rate along with a CRP and ANA. Sed rate was still at 25, CRP was 2.4, ANA was negative so they said NO Lupus, and also mentioned I didn't have any symptoms of RA. Interestingly enough, he mentioned he doesn't even really think I'm iron deficient, due to the fact my ferritin was normal, (I had a very high UIBC, very low Iron % Saturation, and slightly lower Iron test) But nonetheless, stated that he wouldn't argue the hematologist's plan.

They wanted to re-test in a month, so I did, and the Sed Rate was then 23 (down from 25) but CRP was 2.9 (up from 2.4). SO they said re-test those again in 2 weeks. My doctor said he would refer me to a rheumatologist but didn't expect anything to come of it, and in fact they still haven't called me with my consultation appointment.

2 weeks later, I am feeling terrible, went 2 days with chest pain that was worse with a deep breath, radiated to right shoulder, short of breath and exhausted to the point of having to sit down and recoup just from putting laundry away, headaches still, lots of pain throughout body. I got my CRP and Sed Rate drawn again, and the CRP in 2 weeks time has gone from 2.9 all the way to to 6.9 and Sed Rate from 23 up to 38. I haven't been acutely ill, nothing other than my usual pains and fatigue, with the addition of that period of about 30 hours of chest pain that went away. (I nearly went to the ER but talked myself out of it.)

Do these symptoms and lab values sound familiar to anyone? My sed rate has been elevated for at least 6 months now, platelets elevated for what is likely 6+ years, CRP elevated now for at least a month. Still waiting for rheumatologist appointment as I mentioned, I'm not sure what they will want to do.

I work full time, and take care of my 5 and 3 year old by myself at night while my husband works 2nd shift. I manage all the household chores myself on top of all this, while feeling absolutely terrible. I really want to know what is going on with me, but my family doctor doesn't appear to be concerned and I'm very frustrated. It's really wearing on me and making it difficult to be a good mom to my kiddos while feeling this way.

I have been taking the iron 3 times a day with vitamin C and rarely missing a dose. I really wish I was going back to the hematologist sooner; I would really be interested to see how the iron dosage being upped and the baby aspirin have effected my platelets. Plus, wondering if I DO perhaps need the bone marrow biopsy, could we please not wait any longer than we have to?! I am just hoping to hear from anyone that might have some insight for me. Thanks in advance, everyone. :)
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Avatar universal
Amanda, thank you for sharing your situation. ( And thanks also to who ever mentioned checking for mycobacterium) My teenaged daughter has experienced similar symptoms as you recently plus random rib, back , and recently joint pain, for nearly three years. Finally we found a doctor who is taking it seriously. Her labs were similar to yours but her IgG was normal and  her IgA was high and a very strange thing was that she had an elevated Vit. B 12 level - ( Yet she is a strict vegetarian) .  She is anemic yet iron levels are fine. so I am asking her doctor to check for possible b12 malabsorption issues via assessing homocysteine levels and possibly a Schilling test if needed.
If malabsorption is the cause we may have solved much of the puzzle if  result are negative and B12 is truly elevated we have a whole other set of problems to worry about. Additional labs that her MD ordered are TB test, chest x ray, and  a Lyme Test. If  we don’t find answers I plan to ask for an MRI to rule out anything we may have missed including myeloma type conditions. I am also working on having her see a hemotologist and a Naturpathic Physician. Don’t know if any of these things might help you but at least it’s good for thought… and it’s nice to know we are not alone in this.  Praying you find answers but above all that you find peace and freedom from whatever ails you. Keep me posted.
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Avatar universal
I know this forum is old.....but strange question: do any of you ladies have breast implants?!?!? I have a lot of weird symptoms and off labs, always feel like I was hit by a bus when I get up in the morning and I'm just starting to realize according to "breast implant illness" sites...they may be part if not all of the problem!!!
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Avatar universal
Same here.  I take 60mg of Adderall a day, drink 2 to 3 five hour energy "extra" drinks and am exhausted!!  I have had elevated CSR and SED rates for YEARS now.  I have seen rheumatologists before who have told me it's just CFS and sent me off.   I always feel joint pain as well.  3 years ago I was at least 80 pounds lighter and going to the gym 4 to 5 days a week.  The joint and muscle achy-ness persisted so I stopped.. gained weight and continued to live with the pain.  I am at a loss, helpless, desperate to figure out what is going on.  When I get infections of any kind, pimples, cold sores, etc.. they're always HUGE and unlike anything I've ever seen on anyone else. I am tired of being tired.. tired of feeling like I've always got some kind of infection or fever going through my  body.. and tired of being in pain.  Has anyone had any kind of breakthrough since these posts?

Thanks

Bridget
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Avatar universal
Amanda I’m in the same exact boat minus the cold sores . I’ve have the million dollar work up several times and no dx except”fibromyalgia “ but I really don’t fit that picture eitherThis has been going on for 15 yrs and only getting worse still no answers
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Avatar universal
Hi!  I've never posted in any board like this so not sip urge if this will be lost I the ether!  So, Amanda, I also am wondering what is happening, and Kelly where are you at now?  
My situation:  
-About a year ago (summer 2014?) I started having severe bouts of extreme exhaustion & having to take off work (feeling like hit by a bus is a pretty good description), sometimes a feeling of "being toxic"- hard to describe, but just feeling like I was poisoned- and way worse than a hangover!
-in jan 2105 I started having abdominal pains - upper right quadrant & sometimes extending to my back. After waiting some time for them to subside & with them getting worse, in the last 2 months I have received bloodwork, ultrasounds, lung X-ray etc, ruling out gallstones as suspected (I still have one HIDA scan planned of gall bladder left to do).
-MEANWHILE, in the last 5 weeks I have developed crippling knee pain (right), with much effusion (I actually noticed this 1st and have gained weight [rather quickly fyi] & thought it this), buckling, very limited mobility and pain waking me up. We. Assumed a torn meniscus (I shave worked on my feet for many years), but alas, when I FINALLY saw my sports/ortho, he told me my MRI shows NOTHING wrong!  Regardless my knee was drained and I was given a Cortizone shot extremely extremely painful BTW and I have had very little improvement if any I continue to have pain and swelling and limited mobility He would like me to see a
ALSO meanwhile, I have noticed in my recent bloodwork very high platelet count (412 and has increased), CRP is 6.2 (well above normal range) & send rate is 28 ( high end of normal).  
Thoughts?  
Obvi I need ANA & RF but what else?  
I am aggravated that my previous doc did not mention and was not concerned about high platelets & CRP as they are rather immediately important form what I understand...
Any advice and thoughts are appreciated!  
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1 Comments
I am dealing with the exact same thing and have been for years. I also have a term for it, I call it "I've hit a wall"  and that's how I feel. My body aches so bad from the bones up to my skin. My CRP 8.0mg, platelets 491. MY doctor just sent me a message wanting to try more test for autoimmune condition or meds for fibromyalgia. I'm not sure which way to go but, at least it's finally a direction
Avatar universal
Hi Amanda,

Any update on your condition? Did they ever diagnose you with something. I have almost the SAME story... almost to a 'T'. Platlets, SED, Iron, etc. I feel desperate and keep getting told 'we will just keep and eye on your blood and re-test'. However, I am exhausted, heart beats hard, and have also gained some weight. Any insight would be amazing.

Thank you,
Kelly
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Avatar universal
Thank you so much for your detailed response!

I also could not believe they ran the extensive testing prior to testing my iron. (Thank goodness for insurance, the statement totaled nearly $14,000!) I felt like all those tests were pointless when they could have so easily discovered the iron deficiency.

Also to note, I have had elevated IG% (immature granulocytes I believe?) by lab value at 0.10%. on a normal range of 0.0-0.5%. Other minor elevations on my CBC in the past have included neutrophils at 6.05 and lymphocytes and 3.39. The nurse practitioner at the hematology office stated I have no reason to be concerned, as these are very minor elevations and my white count is usually normal (occasionally slightly elevated).

Of interest, at one visit, my iron had improved, yet my platelets increased from the previous visit, when my iron had been lower. I had thought that if my iron improved, the platelets would too? But instead they went back up.

Both of my doctors have noted that while I have several things “off” on my labs, they are minor so nothing can point to a certain diagnosis, and that my symptoms are common with many different types of conditions.

I have gained a significant amount of weight in the last few years, probably because I moved to a desk job, but also because I just don’t have the energy to move around like I used to before I started feeling this way. I have difficulty concentrating on things for extended periods of time. I suddenly have terribly dry skin that no moisturizer has been able to help. I tend to feel a “fullness” in my glands in my neck, yet have no lumps or enlargements. I sometimes notice my heart racing when I’m feeling short of breath.

I’ve had a Free T4 and a TSH done which were both normal. I will likely ask my doctor for the Free T3 and Reverse T3 testing as you mentioned. I feel like I have symptoms of an autoimmune disorder, but once again the symptoms are vague and could be any number of things. I finally got called yesterday afternoon with my rheumatology appointment, so I am hoping for some answers soon.

In the meantime, I intend to try the Barnes Basal Temperature test as you recommended and will be researching further into mycoplasma infections. I had never heard of those before. Thank you so much for your insight and giving me some new options to consider! It is greatly appreciated!
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1 Comments
Hello. I'm just wondering if you have a diagnosis yet?  It took me two years but I have been diagnosed autoimmune hepatitis and hashimotos.
1530171 tn?1448129593
Hi Amanda and welcome to the forum.

I don't understand why you had expensive genetic testing when one of the
primary causes of high platelet count (reactive), which by the way is not excessively high and more like within most higher lab ranges, is due to the onset of acquired disorders, including iron deficiency. Genetic causes are the least likely causes and I question the reason why iron deficiency was not ruled out ahead of the genetic testing!
I guess in the hematologist's mind, the  possibility of  chronic myeloid leukemia, would be suspect, but normally only after a complete blood count showing a general increase of all types of granulocytes (a kind of white blood cells).

Nonetheless, I suspect that this is going around in circles, as the recent and slightly elevated inflammation markers/ findings are totally non-specific.

So given the low diagnostic value from these tests, the investigation needs to move forward.

From your symptoms, I'm willing to take a shot at an underlying  mycoplasma infectious  condition (including mycoplasma co-infections) and/or possibly low thyroid function.

The issue with this is that in order to rule these out:
1. There are very few doctors who are able to diagnose pathogenic mycoplasma infections and co-infections.
Do a search here in medhelp under Dr. Garth Nicolson, a leading expert in this field and also a part-time medhelp contibutor, for details.

2. Low thyroid function, even at subclinical levels, may affect any part of the
human body, however the conventional testing is flawed, since only serum
thyroid levels are considered.
In order to truly and accurately verify thyroid levels, one must step outside conventional doctors and get tested for free T3, Free T4 and reverse T3.

By doing Dr Barnes Basal Temperature self Test , this can be also achieved (barring any active infections), but please do a search for it on your own and follow the simple instructions precisely.

Note: If the suspected low thyroid is secondary and Adrenal Fatigue primary(not an established conventional medical diagnosis, but affecting many people, who are mostly in limbo, undiagnosed or worse, misdiagnosed!), then the low thyroid condition should be not treated in the usual manner, until adrenal function is normalized.
In such a case only a Naturopathic Doctor or Functional Medicine Doctor would be able to diagnose and treat you for adrenal fatigue. (and consequently low thyroid)

In connection to unresolved low adrenal function:
When cortisol  levels drop, after prolonged stress causing high cortisol demand, since cortisol regulates the immune cells in our gut,  those cells become dysregulated, making us more susceptible to pathogens like bacteria, yeast, and parasites.

Please let me know if these resonate with you and you may at any time post again or pm me directly with any questions or concerns , but note that
my comments & suggestions are not intended to replace medical advice.

Best wishes.
Niko




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