Yep, that’s what we were so stressed about.
Tim’s platelet count came back high with his annual blood work. So his doctor sent him for a retest. That also came back high, though slightly lower. Unfortunately, the two tests had been done at different labs, which can apparently cause a difference in results. So he was sent for a third test just so the doctor could compare apples to apples.
But as you may have guessed, the third test came back high too. So it was time for a hematologist.
And of course you can never get in to see specialists quickly. Frankly, I was shocked when we were able to get an appointment two and a half weeks out.
Just to add to the fun (aka major stress), we still barely got the referral through in time. Tim’s doctor’s office faxed the referral request over three times, but each time the insurance claimed it never received anything.
At this point, there were only five days — and only three of them business days — before the appointment. So I got on the phone to verify that the fax number was correct. (It was.) So I asked the customer service representative how else we could get the referral in. Should we try faxing it? Could we overnight it to the company and still have the referral processed in time?
The rep, bless her, got on the phone with the doctor’s office and gave them her department’s fax number to make sure the document was received. She said she’d then walk the fax over to the authorizations department herself. Like I said, bless her.
And so the approval came through two business days before the appointment. But I didn’t hear about it until the day before the appointment – and then only because I called the hematologist’s office thinking I had to reschedule. So our nerves were already pretty frayed by the time we actually saw the doctor.
Then of course we had to deal with “specialist time.” We were brought back about 20 minutes after the appointment time, and the doctor herself didn’t come in for another half hour or more. Once she introduced herself, she listened to Tim’s lungs, asked some general questions and told us she wanted him to get more blood work, a chest x-ray and an ultrasound. We were told to come back in three weeks to review the results.
We got no information of what it might be or how likely the worst-case scenarios might be. So we just got to worry. For 21 days.
The follow-up appointment was on Wednesday — again, about an hour after the scheduled appointment time — and she led with, “Well, it wasn’t any of the bad stuff I was testing for!”
Apparently, she’d checked for several things, including leukemia. I should note that leukemia is actually the only condition she named. We still have no idea what other things she checked for.
Anyway, the doctor essentially said she doesn’t know what’s causing the problem but she’s not worried about it since it isn’t the scary stuff she worried about.
So we came away with the following:
- If the count goes over a million, he can go on medication. His count is in the low 400s, so that’s not terribly helpful.
- He needs to get retested in three months. If the count is the same then, the next test will be six months later. If that one is fine, he won’t need to be tested for another year.
While aggravated by the doctor, I’m relieved that the high count isn’t a symptom of cancer or some other life-threatening condition. Tim’s a little less pacified because he hates not knowing what’s behind the increased platelet numbers.
I understand his trepidation to a point, but I’m too exhausted for the question to bother me. After almost three months of worrying, I’m emotionally drained and not interested in fretting about something that’s been deemed, for lack of a better term, benign.
Besides, we live with a ton of medical uncertainty related to our conditions. Even after decades of research, science is still only moderately sure how depression works, let alone how/why antidepressants are effective. It sure as hell don’t know what’s behind fibromyalgia or exactly why Guillain-Barre leads to lifelong chronic fatigue. But Tim and I live with those day in and day out.
The fact is that our bodies do stuff all of the time that science can’t explain yet. As long as it’s not life-threatening, I’m content. I just wish the patient himself were too.
Anyone else dealing/making peace with medical uncertainty?
I hope they figure out what is going on and that it is something they can control easily. There’s so much uncertainty, but the good news is that in situations like this when they ‘find something’ it’s often a catch that can be way ‘in time’ before it turns into something much worse. You’re doing the right thing staying on top of it.
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Yeah, it’s a relief that they didn’t find anything worrisome. But if they had, his platelet count was relatively low (in terms of having a high count) so I’m sure it would’ve been caught in the early stages.
I’m sorry you’ve both been so stressed about that, and hope you can find ways now to decompress. It’s good they dug a little deeper to make sure everything was OK, and that they’re keeping an eye on him. With that in mind, high platelets (and that number is not particularly abnormal, as the range needed to require medication indicates) can have many thoroughly boring causes and be found in completely asymptomatic patients. Mine have previously been attributed to anything from anemia to inflammation to my body being in the process of fighting off an infection. Perhaps something like that could be afoot with him? His joint and skin issues suggest he’s no stranger to inflammation.
Yep, I did read that inflammation can cause higher platelet counts. Or maybe that they were concurrent symptoms. It wasn’t really clear, but it *was* clearly delineated as the “not worrisome” side of what could be behind the issue. And yes, his “high” platelet count is pretty far down on the low end. So I guess we’ll just monitor it and hope for the best.
As I mentioned couple weeks ago I also had a cervical cancer scare. I had an abnormal pap 2 years in a row then right after I did my pap this year and had a new iud put in they wanted to biopsy me right away. I chose to wait till after the holidays passed and did it in Jan. but that still was a very long 3 weeks thinking about what if’s and trying to analyze every ache and pain I felt as if it might be cancer. I was even scared about losing my hair and what if this was my last holidays with my kids and BF. Yeah don’t look up youtube videos related to any medical because it just scared the hell outta me and made me cry. My BF and friends and family were amazing. I figured its best to let them know that I was going for this test then to drop the hey I have cancer conversation on them. My BF just held me while I was worried and calmed all my fears. Actually talking it out with him helped me the most, to think whatever it is I have to fight it. Thankfully I didn’t have cancer. What a relief that is! also I cant imagine going through this multiple times or every year to check if I do I have cancer or people who have cancer if it has returned.
I can only imagine that’s a small dose of what cancer patients do go through. I know it sounds cliché but it does put perspective in your life. Financial or otherwise. Can I afford treatment? Can I take off of work? Who will watch my kids? etc. Who are the people I want to be surrounded with. Tim I hope you know people in this cyber world care about you and abby. That your a strong man who I don’t know how you go through day to day basis with the conditions you already have but you do it! I wont even say relax but just distract yourself as much as possible because that’s all you can do at this point.
Thank you for those kind words. Tim really appreciated it, as do I. I’m just glad your boyfriend was there for you because it can be very, very scary. I think I was in denial during mine, so it was easy enough to deal with. But later, when I was told I’d have to monitor it for a few years… Then it hit home how terrifying/bad it might have been.
Twenty years ago, my husband had a physical and came back with high platelet counts as well. His dr. at the time said high platelets are like a shadow you think you see behind a bush — it may be nothing or it may be something scary. Lots of tests later, no sign of anything amiss besides the high counts. I read later that certain dietary habits (such as vegetarianism, as we practiced at the time) may lead to increased platelet numbers. A couple decades on and he is still fine. Glad to hear it sounds like nothing in your hubby case as it was in mine.
Good to know that it can be nothing long-term too. That’s a relief! Tim’s *definitely* not a vegetarian, but we do eat pretty unhealthily so maybe that has something to do with it.
Phew! I’m very glad to hear Tim doesn’t have cancer. I’m sorry about all the BS with the doctors.
I went through something very similar back in November. What I thought was a swollen lymph node turned out to be a thyroid tumor! For an entire month I thought I had cancer. I couldn’t eat or sleep and I was a complete mess. Add the stress of dealing with doctors and it’s just too much. My results came back benign thankfully.
I’m so sorry you went through this, but I’m terribly glad to hear that it’s not a worst-case scenario.
Oh no! That must have been incredibly scary and stressful. I’m glad it turned out to be benign, but that’s still an exhausting experience.
What a relief! I went through something similar last year with an elevated lymph count in my blood work. After a few blood tests, I had an ultrasound and an appointment with oncology, followed by more blood tests. They determined I didn’t have leukemia or lymphoma, but rather that my lymph count has always been somewhat elevated and they believe it’s due to my autoimmune condition. I had to wait two months for the appointment and then several weeks for the results and I remember how frustrating and scary it was to not know. Sorry you didn’t get a more detailed answer of what’s causing it but at least it’s not cancer/anything equally worrisome!
We were definitely lucky to get in as “quickly” as just two and a half weeks. Any wait is pretty exhausting though.
I’m glad yours turned out not to be any of the scary stuff, and that they have at least one plausible explanation. I wish we’d come away with one, but in this case maybe nothing is better than something.
Thank goodness it’s not cancer at least. I’m with you – so MANY of my ailments and symptoms fall under “Uh, WTF? We don’t know….” that if they rule out a life threatening disease and my own research doesn’t indicate it SHOULD match one of them, I just don’t fuss about it. It’s frankly more shocking when they CAN identify what’s causing my problem and can treat it.
I need my energy for other things. May Tim be able to find some level of Zen too.
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Yeah, it takes too much out of you to worry about things that, allegedly anyway, you shouldn’t. I’ll preserve my energies for all the stuff we’re supposed to be keeping tabs on.
I’m so sorry that you have been having to go through this. I had something similar two years ago, and it was the longest few weeks of my life. It sounds like you have processed it well, and I hope he is able to. Bodies are magnificent mysterious. I hope you can both breathe easier. Thinking of you!
*mysteries (let’s pretend that I can spell)
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Magnificent mysteries/a huge headache… Tomato/tomahto. I think he’ll get through the worry eventually. It’s that or go crazy. And we’ve both tried that route on numerous occasions. It did’t agree with us.
Just came back from seeing an opera called “As One.” There’s a line in it that applies here:
“Nature doesn’t always comply with our wishes.
“Nature just IS.”
Substitute “medical issues” for “Nature” and you’re left with…more WTF-ery than two people should ever have to deal with, frankly. As the kids say: It is what it is. Even when what it is is incredibly frustrating and exhaustion-making.
Hope you can get some rest now.
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I’m definitely much calmer now, yes. Tim will learn to deal with it — or his ADD will make the worry a very distant thing… Hopefully.
Whew! Sorry you spent the last three months being put through the ringer. 🙁 I’m nearly at my one-year anniversary of living with a mysterious abdominal tenderness. My regular doc, an OB/GYN, and a GI specialist are all equally baffled. Everybody agrees that it IS there and that it SHOULDN’T be there – but nobody can figure out what’s causing it! I’ve been told that it’s probably not anything particularly dangerous since whatever-it-is seems to be stable. But “probably” is not a comfortable Sword of Damocles to have hanging over one’s head.
Interestingly, that’s the exact metaphor Tim used. So sorry that you’re having to deal with the tenderness. I’d be scared as hell and furious at my doctors. I guess it’s good that they’ve (presumably) ruled out the bad stuff. But living with a high platelet count has got to be a helluva lot easier than living with abdominal tenderness. Take care of yourself (and your stomach).
Thank God it wasn’t any of the bad stuff! I can’t imagine what the past couple months have been like for you guys–I’m sorry for all the stress, and that he’s still concerned. I can understand that. I probably would be, too. But not cancer is great news!
Indeed. Or some other bad possibilities apparently.
It’s been… an eventful few months. My mother had a growth the size of grape fruit(she’s a bigger lady and the outer lump only amounted to the size of pitted prune) in her right breast. 4 years ago it was a lump the size of raisin that turned out to the the size of a prune in her left breast. Luckily, not really cancer? Essentially the doc said she was having benign tumors that enveloped the cancerous cells to sort of lock those away… So I’m thirty one and have to worry about my family’s history of colon, uterine, and breast cancer. And then my grand father had a stoke, luckily while in a good hospital(managed to recover pretty well though he is now that old man in Florida waving his cane at people. And then my husband with a melanoma scare. Turns out, being that he’s a heavy mix of the Mediterranean culture, his fingers just now naturally come with a black line or two…
Btw, yay for no cancer for Tim!
Eesh, that’s exhausting just to read about. I’m impressed you could get through it all without losing your mind. So sorry that you have to go through the worry about all of those types of cancer. I guess it’s good to be aware of these things, but also terrifying.
Several years ago I had a biopsy on a place on my face that showed cancer. My (really good) dermatologist referred me to a big hospital’s plastic surgery department. When I wasn’t notified about an appointment within two weeks, my doctor’s office called them to inquire. “No referral received”. That didn’t match the “Thank you for the referral” from two weeks before. My doctor made such a fuss that I was seen two days later and was on the immediate appointment list with that department for the next 4 years that I lived there. Still miss my dermatologist!
That’s a pretty great dermatologist! I’m so sorry you had to go through that, though.