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Old 05-04-2016, 08:57 PM #11
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DavidHC, I think that en bloc has made an excellent suggestion.
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Old 05-05-2016, 03:08 PM #12
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Hi David

Don't want to panic you and I agree with en bloc & kiwi's suggestions but you asked for others experiences with low white blood cell counts.

My wbc tested low 6 months before I had my initial Adrenal Insufficiency crisis (and subsequent diagnosis with Autoimmune Addison's Disease). At the time of testing I had been referred for a Rheumatology consultation but was seen by a resident who misdiagnosed me with Fibromyalgia. Monitoring the wbc was the only 'plan' he proposed. I sometimes wonder if it had been followed up more proactively at the time then I might not have gone into crisis and suffered the resulting permanent effects I now have to deal with.

In all the various rheumatology tests I had at the time the low wbc was the only test that came back abnormal. So a low white blood cell count may sometimes be the only indicator in the routine blood tests normally done that something more serious may be occurring (not necessarily Addison's as it's pretty rare) but something else requiring following up.

If a referral to a hematologist is difficult to get maybe an immunologist or endocrinologist may be easier to get an appt.

All the best for getting some definite answers and hopefully some effective treatment.
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Old 05-12-2016, 11:47 PM #13
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Thank you for your helpful response. I'm not so much worried as I want to get to the bottom of this, and see if it can help lead me on a path to diagnosis of the cause of my SFN.

My platelets and Hemoglobin (which is what I presume you mean by HGB) are normal and not too low, but on the lower level of normal for sure. My neutrophils have been below the normal range actually for two tests in a row now.

I've had my D tested and do so every few months. I take both D and K2 daily. My D is moving up slowly. On your suggestion I'm having zinc, copper and iron tested.

I take no medication, so that's out.

My suspicion is some infection, and in fact I had planned to get tested for H Pylori, so it's funny you mention it, and I find the link you note very interesting. Someone on here recently had a similar case of SFN to mine and he tested positive for H Pylori interestingly enough. That's one reason why I plan to have the carbon-14 breath test.

Thanks again!

Quote:
Originally Posted by Marlene View Post
Hi David,

Try not to worry at this point. They usually don't do much when someone has a WBC just below normal and not neutropenic . They usually put you in a watch and wait mode. Unless the doctor sees a lot of new white blood cells (blast) or if the differential count indicates something or if you have other symptoms (enlarged spleen). I assume your platelets are above the low-normal as well as your HGB. Are your neutrophils(ANC) in the normal range?

It's good to chart your blood counts so you can see the trend overtime like you are doing.

Definitely get your zinc, copper and iron checked. In addition to the B vitamins already mentioned, vitamin D & K2 are important. You can't test for K2 though.

Also get screened for h.pylori even if you have no symptoms. Disruptions in the gut can impact bone marrow. Medications can impact your blood counts too.

John was treated for bone marrow failure back in 2002. The reason why he has PN.

You may find this helpful: http://www.bloodjournal.org/content/...o-checked=true

http://www.ncbi.nlm.nih.gov/pubmed/23771659
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Old 05-13-2016, 08:34 AM #14
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Just so you have some data to back up the reasons for checking copper and zinc. the last one speaks to an excess zinc causing a copper deficiency.

http://www.ncbi.nlm.nih.gov/pubmed/17236184
http://www.haematologica.org/content/92/10/1429
http://ajcp.oxfordjournals.org/content/132/2/191

http://onlinelibrary.wiley.com/doi/1...60217/abstract

Good luck with everything.
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Old 05-14-2016, 12:14 PM #15
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Thank you again. I appreciate all this information. I wouldn't have known about this possible link to neutropenia.

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Old 05-14-2016, 12:17 PM #16
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Thanks, En Bloc. Yes, I'm aware of that, partly thanks to your previous posts on this forum. I have been planning to do the test, just trying to figure out how I can have it done without having to pay $200 out of pocket, which is too much for me. I think I may have figured it out.

Now, if I do test low, will the treatment be IVIG? Or will it depend on the degree of deficiency? I can say that last time I was in the high sixes (or 600s) and now I'm in the low sevens (or 700s), so it has moved slightly up in the last couple of months.

The only other thing to report is that my IgE had gone up from 95 to 100, so now at the high end of normal or just over.




Quote:
Originally Posted by en bloc View Post
If your IgG is low (or on the low side), then you NEED to be tested for IgG subclasses. It is VERY common to have a normal total IgG level, yet be deficient in one more of the subclasses. I'm deficient in 3 of the 4 subclasses, yet my total is just over the normal level because the first subclass (1) is the largest and I have a normal level in this category...bringing my total into a normal level.

Like I said, it is quite common for those with autoimmune disease to be immune deficient. Hopefully your hematologist will order IgG subclasses, but f not, ask him to do so.
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Old 05-14-2016, 12:28 PM #17
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Hi Bluesfan,

Thank you for sharing your experience with me. And don't worry, after all that has happened to me, it takes a lot to scare me.

I'm sorry to hear about your experience here. From what I know, it's a difficult illness to deal with, though I suppose none of what we deal with is easy.

We've sent a referral to a hematologist now. Hopefully it will go through and I'll see her sooner than later. In the meantime I'll keep an eye on things with WBC testing.



Quote:
Originally Posted by bluesfan View Post
Hi David

Don't want to panic you and I agree with en bloc & kiwi's suggestions but you asked for others experiences with low white blood cell counts.

My wbc tested low 6 months before I had my initial Adrenal Insufficiency crisis (and subsequent diagnosis with Autoimmune Addison's Disease). At the time of testing I had been referred for a Rheumatology consultation but was seen by a resident who misdiagnosed me with Fibromyalgia. Monitoring the wbc was the only 'plan' he proposed. I sometimes wonder if it had been followed up more proactively at the time then I might not have gone into crisis and suffered the resulting permanent effects I now have to deal with.

In all the various rheumatology tests I had at the time the low wbc was the only test that came back abnormal. So a low white blood cell count may sometimes be the only indicator in the routine blood tests normally done that something more serious may be occurring (not necessarily Addison's as it's pretty rare) but something else requiring following up.

If a referral to a hematologist is difficult to get maybe an immunologist or endocrinologist may be easier to get an appt.

All the best for getting some definite answers and hopefully some effective treatment.
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