# High cortisol/WBC/platelets with CFS?



## Guest

Hello,I'm new to this particular board. Very long story short: had a bout of mono in 2003 I prolonged by going back to school after two weeks, followed by a bout of parvo in 2004, subsequent diagnosis with Graves' disease. Currently euthyroid and not on any thyroid meds.I've had what I guess are the classic symptoms of CFS since the mono (and even before, I think), but have written them off as recovering from the mono and then Graves-related, as did my doctors. Now after seeing an infectious disease specialist and an immunologist I think we're getting closer to a diagnosis. (Freakin took long enough, though; I'm starting to get really annoyed that no one suggested this earlier.)Here's the part that really confuses my doctors. For about a year, I have shown a high white blood cell count on my labs. I've had a bone marrow biopsy that was negative for any cancers. Lately my platelet count and cortisol levels have been high as well. Does anyone have any experience with these symptoms? They don't seem to be related to my thyroid level and my CFS-like symptoms have been around for much longer, so the doctors seem to think it's something separate. I'm curious if any of you recognize this as anything in particular.Thanks.


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## Clair

Hi Magritte







firstly high levels of cortisol are not a common feature of CFS/ME, so that the first thing that hits me. Also I don't believe increased WBC is a symptom of CFS either. Don't get me wrong I'm not doubting you! your CFS like symptoms are probably due to something else underlying as CFS has its symptoms in common with alot of other medical conditions!The things I would be looking to my specialist to be testing and ruling out for would be conditions affecting the adrenal glands such as cushing's, addisons and also pituatary tumours. I would also ask them to check you for lupus and arthritic conditions - which might account for the high level of white blood cells.I'm not trying to panic you, just make sure you push your specialist to rule out everything before they settle on the diagnosis of CFS as your WBC and cortisol levels are not indicative of a 'classic' CFS diagnosis.Take care and let us know what you find out,Clair(ME/CFS and hypothryoidism)


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## Guest

Thanks Clair, and don't worry, I didn't think you were doubting me! My endocrinologist is going to do a more thorough cortisol test (not to be blunt but I think it's the "pee all day" one) so that should help determine if there's an adrenal issue.The thing about the CFS is that I have had those symptoms for a lot longer than the WBC/platelet problem, but they always got written off as something else. So personally I suspect I do have CFS but I also agree that the WBC thing is something else. I was just wondering if anyone who has CFS has also had a "something else" that caused these problems...just an idea I could take to my doctors. The mystery continues.


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## M&M

Just wanted to say also that those blood results are not at all common in CFS, and they would make me feel you must have something else going on with you.I'm glad you're continuing to pursue a diagnosis for this "other" stuff going on with you. Hope you will find some answers soon. You'll have to let us know how you get on!


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## Guest

Thank you!Well, the WBC/platelet stuff is still a mystery but I just got tests back positive for EBV with high results for both early antibodies and nuclear antibodies. I know there's some controversy over whether those antibody tests can be definitively diagnostic for CFS but in my case I suspect it all adds up.The rheumatologist who did the tests feels she isn't the best one to interpret them, so she will be sending them to an infectious disease specialist who sees a lot of CFS patients. Maybe she'll be a good doctor for me.One more piece of the puzzle is better than no pieces.


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## M&M

My EBV and HHV 6 results have come up high since the very beginning of my ME diagnosis, and treatment.They spike especially when I am in a bad flare up of symptoms. So, that does sound good for you. (Well, not good, but indicative, I guess I should say.)It is nice to start off with at least 1 piece of the puzzle! Keep us posted!


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## Guest

Well: I don't know what to do.The rheumatologist called and told me that the ID specialist said my labs indicate "prior disease" but not chronic fatigue syndrome currently. (As I said, I did have mono in 2003.) She said based on the thyroid antibody test it might be thyroiditis, and I'm not sure what that says about her diagnostic skills since I do have Graves' disease but my thyroid is currently fine! (Knock wood.)The rheumatologist suggested trying Doxepin and some other drugs to help with the nonrefreshing sleep, but I'm not happy just randomly taking meds when I don't have a diagnosis. (I tried about 9 million different drugs for -- including Doxepin -- when my insomnia went out of control and it was a year before anyone did a thyroid test and found the source of the problem.) I'm already on sleep meds that work, anyway, at least as far as keeping me asleep and not giving me a hangover.I really don't know where to turn right now. Everything I've read about CFS fits me so well; I've also read that the tests I had are no longer necessarily considered diagnostic. I'm getting a copy of those labs and may go back to the first infectios disease guy I saw and ask him for a second opinion.Do you have any other suggestions about where I turn with this? Is there another kind of doctor I should be seeing? My endo is useless and my GP is great but out of ideas.


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## M&M

Is it possible that your thyroid might need attention again? If you DO have Grave's Disease, I think ALL your symptoms could also fit that perfectly.As for taking another med to sleep, well I think that might be a good idea, if your sleep is not refreshing. Having a CFS diagnosis won't help your treatment plan at all, as all they do is try to treat the symptoms as best they can. (Lack of refreshing sleep being a BIG one.)As I was diagnosed with ME, my doctor FIRST address my sleep issues. Without recuperative sleep, you won't get anywhere, so I do think that is the first place to start a treatment plan, regardless of what is wrong with you.Getting a 2nd opinion from another doctor never hurts though! Unfortunately, there is no diagnostic test currently for ME. I do hope that one day there will be, but for now it's just a doctor that can put together all your symptoms, and rule out other diseases. Keep us posted, and keep hanging in there!!


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## Guest

Thanks for your reply! Let me make sure I answer everything.1. My last endo appointment was two weeks before the appointment with the rheumatologist, and at that time everything was still stable. It's highly unlikely for me that there would have been a dramatic change in that amount of time that I didn't notice. Of course I can see why the ID woman went that way but I wish she'd looked at my thyroid labs! (Also, my CFS-like symptoms predate the Graves.)2. The sleep thing -- that is good to know and perhaps I will talk to the woman who manages my sleep drugs. I'm just really leery of going through yet another battery of sleep-drug experiments because of how badly it affected me last time.3. Yes, if only there were a diagnostic test! This uncertainly along with the WBC/platelet issues is very frustrating. What kind of doctor do you see for your ME? Having been bounced back and forth among different specialists, I'm confused as to whether I should be going to a rheumatologist (that's autoimmune, right?), immunologist (same thing?) or infectious disease specialist?I think by now everything else must have been ruled out...isn't that the point where every doctor you see says "Well, we have no idea."


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## Clair

Hi Magritte







a few ponderings to think about(writing this late at night so I hope I make some sense!)From a personal point of view I have had ME/CFS on and off for 14 years now (diagnosed officially for 4 years) and then suddenly two months ago I'm told I have an underactive thyroid gland which completely throws things in the air and makes me wonder if in fact I do have ME/CFS or has it been my thyroid gland throwing a wobbler all these years as these symptoms all began at the same time for me...mind you a few new ones have cropped up over the years!To cut a long story short and to stop beating around the bush, differentiating between what are actually CFS/ME symptoms and what are down to the thyroid is extremely difficult because so many symptoms are the same! Also new ones appear over time and your never quite sure what is what medical condition. And perhaps do these two conditions happen often together? a confusing jigsaw indeed. My endocrinologist often would look at me and go 'Right I think I need to do another thyroid screen' and yet again it would come back normal and he would scratch his head and go back to the CFS/ME diagnosis.From a CFS/ME point of view what type of specialist you get depends I think very much what hospital you go to and who your GP refers you to. I have an endocrinologist because my doctor believes ME/CFS is a disorder of the neuro-endocrine and immune system. But I have also heard of people going to rheumatologists, neourologists and even infectious disease specialists. I think your main symptoms also will have bearing on what kind of specialist you end up seeing. If your main concern is your platelets/WBC perhaps you should be seeing an immunologist and or haemotologist? I suspect why your struggling to get a diagnosis of ME/CFS is that it is only usually diagnosed in the absence of everything else (including coming back normal on thyroid) and your current specialists are seeing that you do have something (Graves) albeit it under control (and the platelets issue) and are attributing your symptoms to that? Also your thyroid screens can come back relatively *normal* but you can still display symptoms. I for example display quite marked thyroid symptoms but only have a very slightly underactive thyroid according to the doctors....so could it be possible with your treatment for the Graves you could have slipped slightly the other way towards Hypothyroidism? If your unhappy with the specialists and really feel you want a second opinion, the best place to find someone in the know about CFS/ME is by word of mouth at ME/CFS support groups. Maybe look up on the internet if there is one in your area? then get in contact? that is how I found my GP who then referred me onto an appropriate specialist. Hope that isn't too confusing I have brain fog this evening and it's reading like a jumbled mess!I'll try to get on again tomorrow and no doubt I will be embarrassed at my late night ramblings!Hope you get some answers and keep at it, Clair xxxxx


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## Guest

Thanks Clair -- on the contrary, this was a very helpful post. You're lucky to have had an endo who at least would take your symptoms into account instead of repeating like a robot "Your thyroid is fine, you should be feeling fine." (And I'm on my third endo.)I'm getting the feeling my combination of problems just isn't anything seen that commonly. Not that it's something rare and bizarre, just not immediately explainable.


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## M&M

Sorry for the delay getting back to you! Was sans internet for a bit. Hate that! lolThe doctor I see is not a specialist. He's a Family Practice doctor, but his entire patient roster (sp?) is made up of ME, Fibro, and other difficult case patients. I think instead of thinking about a particular specialty, your best bet might be to do as Clair says - Check with a support group in your area, and see which doctors are good. I was referred to this great doctor I see now by a neurologist several years ago. She told me she sends ALL her ME and Fibro patients to him.Check out this link from the ME FAQ:http://www.immunesupport.com/community/referral/It has GREAT advice on finding a doctor!I really think that you are currently in the hardest place on your journey. Trying to find a doctor who believes you, and wants to find an answer, and wants to help you. Most patients end up going through numerous doctors before finding the right one.And boy, some of them can be pretty mean! But just keep pressing forward. Something IS wrong with you, and you know it. Now, it's just a matter of finding a good doctor who trusts your gut instincts too. You'll find the right doctor. Might just have to keep looking a bit longer.(Kind of like dating, and looking for Mr. Right...LOL!!)


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## Guest

Thanks! I'm willing to spend some time looking for the right doctor; I definitely have experience and I'm considering firing endo #3 anyway for her inability to see past the numbers on my labs. (She has no interest in addressing my symptoms as long as my thyroid is in range.) Maybe I can find someone who can deal with both the Graves and whatever else may or may not be going on -- seems like it might be the right time.I read that FAQ and found a contact email for a support group from the CDC's website, so hopefully that will bear fruit.I just talked to the nurse at the office of the first ID specialist. She told me "he doesn't deal with chronic fatigue..." (although he did mention it in our consultation) "...but if you fax your labs he'll talk to you about it." Ever get the feeling in advance that something is going to be a waste of time?


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## Guest

First off I want to thank everyone for being so encouraging and welcoming.It turns out that yes, that infectious disease guy was a waste of my time. However, I found a great doctor today. He has had over a hundred patients with CFS and is well versed in many other areas, including Graves disease. He definitively diagnosed me with CFS and has started me on CoQ10 and Enada, and is going to look at the results of a sleep study I had a few years ago to see if I should change my sleep meds. He was extremely honest and informative...and he was VERY interested in the WBC issue, which he's never seen before and was shocked to know that my other doctors mostly blew it off. (Also I'm his first patient with both CFS and Graves. Lucky me!)So I am having very mixed feelings today. It is wonderful to have a doctor who refuses to pass the buck, and in fact insisted on doing or repeating a couple of tests that no one else even thought of to rule various things out. (I would be happy to give a recommendation to anyone in the L.A. area after I've seen him a few more times to be sure he's "the one.") On the other hand, coming to terms with what this means for my life is difficult and probably isn't going to get any easier soon. Luckily I have a good support network and things are otherwise positive in my life...but wow.


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## M&M

Oh boy, I am just so glad you finally found the doctor that's worth your time!!When you said this:


> quote: So I am having very mixed feelings today. It is wonderful to have a doctor who refuses to pass the buck, and in fact insisted on doing or repeating a couple of tests that no one else even thought of to rule various things out. ...On the other hand, coming to terms with what this means for my life is difficult


Oh boy, I remember that perfectly. I remember so clearly my very first visit with my current doctor who I LOVE. I wanted to cry, from shear joy - as this man believed me, cared, and wanted to help me get as better as I could. But I also wanted to cry from frustration. My first visit was great, and I walked out with great resolve that I would get better...But I think it was my 3rd or 4th visit (I was going every 2 months at that time, I think) I just came out mad afterwards.He was doing all these tests, switching my meds and supplements around, and NOTHING was working!!! I wasn't getting better. And I was devestated, pissed off, crushed, mad, sad...You name it.But, I think that gets you to a turning point. You finally know what beast you're fighting, which is good and bad. On the good side, you can finally sink all your resolve into surviving, and living WELL with ME. It IS possible. Though I still have my moments, some 5 years after that first visit, where I feel all those things all over again. It WILL get better. Not your body, mind you - though I've always read that the first 5 years with ME are the worst, and the symptoms usually ease up a little after the first 5 years - but your mind and spirit will get better. With a little time, a few learned tricks, and the support of good friends, you'll live well.But for now, be mad, be sad, be angry. It isn't fair. And I don't think it helps to pretend like we don't notice that.(((((((((((((((((Magritte))))))))))))))))))))


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