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Chronic White Blood Cell Count - very worried.

(24 Posts)
Booboobedoo Mon 17-Sep-12 15:58:32

During fertily tests eight years ago, I was found to have a low white blood cell count (about 2.4) and a low platelet count (about 120).

I had a negative bone marrow test, so far so good, and have been seen annually by a haemotologist to keep an eye on me, but basically it's been classed as idiopathic.

FF to today, and I've been regularly having dreadful dizzy spells + sweating & shaking nearly every day.

I wondered about possible diabetes, and so went and asked for a blood glucose test.

It turns out that my cortisol levels are low (which could explain the symptoms I've been having: I'm being re-tested on Thursday), but more worryingly, my WBC count is now 1.2, and my platelet count is 101.

Does anyone know if the bone marrow test is likely to have to be re-done? Could they have missed something, or could somthing have developed since?

Am in a bit of a state tbh. I don't have anyone I can talk to about this today, and would really welcome a bit of experienced advice and/or handholding.

noddyholder Mon 17-Sep-12 16:00:28

Low cortisol levels make you feel awful it is probably that Have they offered you any replacement therapy?

Booboobedoo Mon 17-Sep-12 16:02:43

Hi noddyholder. (I'm thinking about Christmas now you've replied. Cheeringly).

I haven't been offered anything yet: I only got the results on Friday, and the lab want to re-test for some reason. Maybe that's standard practice: I don't know.

Have you experienced low cortisol?

VerityBrulee Mon 17-Sep-12 16:03:42

You poor thing, what does your GP say? When are you next seeing your hematologist? My ds had ITP, which is dangerously low platelets when he was a toddler. He had a transfusion and made a complete recovery.

noddyholder Mon 17-Sep-12 16:05:07

Sometimes if you have been on steroids (I have) and you try and stop them your body has stopped being able to produce cortisol and you can have something called hypoadrenalism/addisons disease. This happened to me I was a wreck very low blood pressure falling about everywhere it was awful. They had to re instate them pdq! Do you have any other health issues?

noddyholder Mon 17-Sep-12 16:06:15

Addisons disease produces the same symptoms and is very treatable.Cortisol levels fluctuate throughout the day so that may explain the re testing

Booboobedoo Mon 17-Sep-12 16:09:25

Hi VerityBrulee: my GP won't say anything until after the retest, which is why I'm on here trying to stave off a panic attack.

I'm booked in for Thursday morning, which feels like a very long time away.

How awful it must have been going through that with your son! Glad to hear he's ok now.

Noddy, it does appear likely that the cortisol is causing the symptoms, but now I'm basically worried about leukemia (sp?), despite my earlier clear bone marrow test.

Booboobedoo Mon 17-Sep-12 16:15:21

noddy: I have asthma, excema and hayfever, so am quite auto-immuney. I do wonder if that has something to do with what I'm experiencing.

The creams and inhalers I use contain steroids, so I'd wondered if my cortisol levels were high. Was quite surprised to find the opposite!

VerityBrulee Mon 17-Sep-12 16:15:30

What Noddy says makes a lot of sense. AFAIK platelets are not affected in leukemia, so try not to worry about that. I have had a few health scares over the years, and I know the waiting seems endless, but I have now adopted the approach of not worrying until a very well qualified medical professional tells me that there is something to worry about.

Assume it's the cortisol, which is treatable until your doctor tells you otherwise smile

Booboobedoo Mon 17-Sep-12 16:19:41

VB: excellent advice, which I find myself completely unable to follow!

One of the things about having a low cortisol level is not being able to handle stress very well, which certainly tallies with my recent experience, and is really not helping right now.

Must go and change DD's nappy. She is a stinkerbell.

noddyholder Mon 17-Sep-12 16:20:41

Do you have any other 'odd' symptoms? I kind of look a bit tan if my cortisol levels drop

Booboobedoo Mon 17-Sep-12 16:28:00

That's kind of hard to answer: I spend a lot of my life feeling rough, and after a while it becomes hard to distinguish symptoms.

I don't get the pigmentation thing which you obviously do (or not that I've noticed). I have depression for which I'm medicated (Citalopram), I'm always exhausted (but DD is a bugger at night, so that's probably got something to do with it), my asthma is quite severe as is my excema and both impact quite considerably on my life, I shake a lot (I think of them as my hypo attacks) and get faint. Also I'm prone to ibs.

I don't know; I just feel really fed up with my stupid body. I know there are far worse things out there, but all the niggly symptoms I get add up to make my life quite uncomfortable. I just want to work properly.

noddyholder Mon 17-Sep-12 16:30:36

Ibs and fatigue could be addisons. The recovery once you get the cortisol replaced is miraculous Fingers crossed. What time of day was the last test? The pigmentation doesn't always happen. Dizziness and weak legs was a problem for me and having to run to teh toilet with very little notice and no option but to 'go' blush Had a few close calls. Otherwise I was very crampy and couldn't go at all

Booboobedoo Mon 17-Sep-12 16:37:48

Are you alright now noddy? Are you still on steroids?

It's very frustrating feeling this way with no diagnosis (yet).

I found an American website on autoimmune disorders, which says that (in the States) 45% of women were classed as 'chronic complainers' before diagnosis. I can believe it. I've been treated as a hypochodriac since my teens.

Oh, another thing I forgot: my short-term memory is really startlingly poor atm. (Could be sleep deprivation again, though).

Booboobedoo Mon 17-Sep-12 16:38:46

Oh, last test was at 9:15am, and next one is at 8:51am, so about right apparently.

Thanks for engaging: this is calming me down. smile

VerityBrulee Mon 17-Sep-12 16:48:32

Gosh, you have a lot on your plate ((hug)).

I had post viral fatigue for about 10 years between my mid teens and mid twenties, and had a lot of seemingly unrelated problems which were really debilitating. I was under the care of about 5 consultants at one point. I'm not saying this is what you have, just that I was really fed up with my body and just wanted it to work properly. Somehow or another it all came good and at 43 and with 3 dc, I feel better than i ever did.

BUT, you need to be kind to yourself. What you have now seems like a treatable problem, so hopefully that will be resolved soon. Do you see a consultant for your asthma? My two boys have asthma, which has improved a lot since a new GP totally overhauled their medication. Have you looked at your diet regarding your asthma and excema? Ds1 wheezes with too much dairy for example. I had dreadful IBS in my 20's, was hospitalized many times for it, but eliminating wheat from my diet makes a huge difference to me.If I eat too many of the dc's crusts, I get cramps and constipation.

How old is your dd? Any chance her dad could get up with her sometimes? If I don't get enough sleep, my body becomes fragile IYKWIM, which was pretty difficult when my dc were young.

You sound like you are at a really low ebb, but it won't always be like this, there are lots of ways to help you feel and manage things better.

Booboobedoo Mon 17-Sep-12 17:09:23

Thanks Verity: I've got tears in my eyes now. I'm actually usually fairly tough (I think), but I'm so worn down.

DH does get up with DD, but she only wants me, so screams the place down until I come.

This too shall pass.

I've never seen a dietician wrt my diet. It just feels like one more thing to add to the list, which feels too long already.

I was put onto stronger asthma medication just last week which is already making a difference, so that's good. <clutches at straws>

I read about post-viral fatigue syndrome and did wonder, but really it's all speculation atm. I suppose I just need to try to take my mind off it until Thursday, but I'm so tired!

I'm glad you eventually recovered. smile

noddyholder Mon 17-Sep-12 17:13:31

God it sounds draining. but I tried to explain away all my symptoms but it was the addisons. I had a kidney transplant when i was 19 and steroids were standard treatment then. I needed another in 2000 and by then the drug regime had changed and steroids were very much out of fashion (which is good) so they stopped mine gradually and once i got to a certain level i fell apart and eventually was diagnosed and put back on the lowest possible dose smile

Booboobedoo Mon 17-Sep-12 18:19:00

Wow noddy! Two transplants?

Your poor body.

So I take it you have to take the anti-rejection drugs? I know they can make you feel lousy on their own.

My friend had a liver transplant a few years back. I have never seen anyone look so ill.

Thanks for taking the time to post on my wobble thread - and Verity.

I'll let you know the results when they come. smile

Lonecatwithkitten Mon 17-Sep-12 21:51:33

You should really have dynamice testing before addisons is diagnosed best practice is to perform an ACTH stimulation test to show that you don't produce cortisol in response to stress. Usually people with addisons have an abnormal sodium potassium ratio and so increasing the salt in your diet can help improve this.

noddyholder Mon 17-Sep-12 21:54:18

I had quite a marked craving for crisps for the potassium and sodium it was bags per day and I sucked salt straight from the packet

out2lunch Mon 17-Sep-12 23:52:20

this is all very interesting - i have me but so many of these addisons things are ringing bells
esp the tan and the crisp cravings

VerityBrulee Tue 18-Sep-12 10:11:12

How are you feeling today Booboo? Hope you got some sleep last night, try to plan some nice things to do over the next few days to distract your mind smile

Booboobedoo Mon 24-Sep-12 09:54:23

Hi all - thanks for your kind thoughts, Verity. smile

The doc didn't get back to me on Friday, so I'm chasing today, but a Dr friend of mine talked to the consultant haemotologist at her hospital, who thinks it's likely I have cyclical neutropenia, quite possibly aggravated by the chronic sleep-deprivation I've been experiencing for the last eighteen months.

I'll let you know when I get anything concrete.

Have had the weekend from hell with DD - waking every hour all night for three nights in a row due to teething/virus thing, so am feeling worse if anything.

It can only get better, though, right?

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