When to see a specialist for health concerns...

[ArtisticFan]

I know there are some people in healthcare fields on here and some who have lots of experience with their own health or that of others. Let me start by saying that I'm not looking for a diagnosis...just some advice and guidance.

About a year and a half ago I began vomiting several times a week - eventually each day. I didn't feel sick to my stomach, but I would cough once and whatever I had just eaten would come back up. I finally took the time to go see my doctor who immediately sent me to a gastro doctor for evaluation. He performed an EGD the next day and said I had a blockage that he took care of for me. The symptoms disappeared and I went on my merry way.

A few months later I went back to my primary care doctor to evaluate the meds I was on for my thyroid. She said my thyroid levels were normal despite my symptoms worsening (thinning hair, unexplained weight gain of about 15 pounds, muscle cramps and extreme fatigue, etc.). The only thing she found was the my white cell count was high. She suggested that I might be coming down with something and sent me home.

A month after that I still hadn't gotten sick, but I was due for a trip to the OBGYN for my annual exam. I am on continuous birth control due to severe endometriosis and fibroids, but had been experiencing break through bleeding more and more each month. He changed the pills, but that didn't do much to fix anything. Since I know he wants to do surgery, I haven't been back.

My primary care doctor moved so I started seeing someone new. During my physical he informed me that my blood test results show that I'm slightly anemic and that my white cell count appears to have been climbing for the past 18 months - from 14,000 to 29,000 currently. I asked what could cause that, but he brushed me off and said I was probably just getting a cold. If I was getting a cold, I would have gotten one by now.

I realize that the first thing most of us not in medicine think when we hear that there is a problem with our white counts is leukemia. I have a strong family history of it so that does worry me some, but I'm more concerned with just finding out why it is climbing and what can I do about it. I don't know if it is related to me feeling so bad all the time, but if that is the case then I need to know.

The subject has come up again recently because I went to see a urologist regarding an overactive bladder. He informed me that there is a considerable amount of blood in my urine. He has ordered several tests, including a CT Scan with contrast. While they were removing my IV from the test, I started bleeding quite a bit. The nurse and techs there in the room had a horrible time getting it to stop, to the point of asking me if I was on any blood thinners or aspirin. I informed them that I wasn't, but they just kept giving each other looks.

Since my primary care doctor is not concerned I'm not sure what I should do. Should I make an appointment with a hematologist? I don't want to make too big of a deal out of something that is minor, but this is really beginning to concern me.

[backspin]

Do it!! The thing I have learned in my limited contact w/ the medical world is that YOU have to be your own advocate & take charge of your own care. If you feel your concerns aren't being heard and you have reasonable thoughts that something may be wrong (which it sure sounds like you do!!) then you have to pursue that & find out. If nothing else, go get yourself the peace of mind that you need. And God forbid if it is something worse, catch it as soon as possible & get on a treatment that will let you recover & live a better life. Good luck!!

[Gazpacho]

How far away did your old primary care doctor move? It sounds like you had a good relationship with her, so I would start by asking her for a second opinion. It sounds like it's serious, but it may not be what you think and thus may require a different specialist than a hematologist.

[ArtisticFan]

How far away did your old primary care doctor move?

She's in Washington DC now. I live in Atlanta.

[Gazpacho]

She's in Washington DC now. I live in Atlanta.

Yikes. Would you be able to call her up or write to her, explaining your concerns, and asking for her to recommend one or two more primary care doctors in your area to get a second opinion?

[OlieRow]

I'm just a med student, but if you're concerned and don't feel your primary doctor is addressing those concerns then I don't see anything wrong with going to see a specialist. Just check and make sure you don't need a referral or to see a specific physician.

ETA: Like Gazpacho said, you'll want to make sure you're seeing the right specialist so talking with your primary about seeing someone would probably be beneficial.

[Aceon6]

ArtisticFan, may I ask what kind of reimbursement your PCP gets? It it fee for service, or does s/he get a flat fee for having you as a patient? If it's a flat fee arrangement, most commonly called capitation or shared risk, s/he may be reluctant to order extra tests or follow up care unless that care is offered within his/her medical group. You may get better results by switching to a multi-specialty practice where the specialists are in house.

As for the follow up, as Gazpacho suggests, contacting your former doctor and getting recommendations would be a good next step. It's not sure from your description whether you need a hematologist, an endocrinologist, a gastroenterologist or all three. Your former PCP should be able to point you in the right direction.

p.s. Might be a good idea to press to have your clotting time measured.

[Debrah]

You should get a 2nd opinion and new complete blood work done immediately if not sooner and if white cell count is still high discuss result with doctor and ask about taking marrow biopsy test to look for Philadelphia gene to rule out leukemia (CML). Chances are not high for having leukemia as there is only about 453 new cases in Canada a year, or 2500 in the USA, so take heart it is very rare and it is far more likely you could have/had a kidney or bladder infection leading to passing of kidney stones accounting for the blood in urine and the still high white counts from fighting off the infection. Weight gain could be due to retaining water from recent improper kidney function or perhaps a diabetic issue or the thryroid condition, even the meds could be causing the weight gain are you sure you are not pregnant or even a tubular pregnancy or adding cysts considering your menstrual issues? Have you ever been tested for Lupus? Have you had blood clotting or heavy bleeding issues before?

No matter what, you need to be under physician's care and if you don't trust what your current one is doing to get to bottom of things, then do get another opinion. Please insist on getting the blood counts redone again anyway, look at cortisol and sugar levels too, and test for conditions like cushing's or improper food absorption or allergies and or poison exposure too, esp if white counts are still high then get thee to a specialist for sure...Don't wait.

Hey even if it is leukemia it is not as bad or dire a condition as it used to be; people can survive on Gleevec, Spyrcel now for years and years, and more breakthroughs are comming everyday. What you can't survive is not getting the right answers, living with all the stress of not knowing what's happening to you, or not getting lifesaving treatment you may need. The period of May thru August has been tough for a lot of people health wise, so I feel your pain. Hope things improve and you get your answers...

[Allskate]

Do you have a good endocrinologist for your thyroid problem? When my gluten consumption was affecting my thyroid, I learned quite a bit about the treatment for thyroid diseases. A friend of mine is getting treated for thyroid problems resulting from her cancer treatment. What we've both learned is that most endocrinologists know much more about diabetes than thyroid problems and often rely too much on test results and not enough on symptoms, so they don't treat appropriately. It could be that some of your problems are a result of whatever your thyroid issues are. Since you should be seeing a good endocrinologist anyway, you might start there. Do some research to find a good one in your area.

I hope you find out the problem and find a solution and feel better soon. The reality probably isn't as bad as the fear, but it's always best to find out what the cause is.

P.S. I don't think it's unusual for people with fibroids to be anemic.

[Anita18]

I'm just a med student, but if you're concerned and don't feel your primary doctor is addressing those concerns then I don't see anything wrong with going to see a specialist. Just check and make sure you don't need a referral or to see a specific physician.

ETA: Like Gazpacho said, you'll want to make sure you're seeing the right specialist so talking with your primary about seeing someone would probably be beneficial.

I agree. Nobody knows your body better than you do, especially when you've just changed doctors. Medicine is never foolproof - it's just basically making educated guesses. So the more information they have, the more accurate those guesses are.

[LilJen]

I second the recommendation for more testing. Not a doctor, but I had thyroid problems for years that went undiagnosed because the doctor ordered ONLY an FSH count. When I encountered an OBGYN that had had some extra endocrinological training, she ordered T3, T4 and free T4 and bingo! there was the hypothyroid. So if you have not had a FULL thyroid panel, definitely get that done! I hope you can find a solution soon.

[nubka]

You should get a 2nd opinion and new complete blood work done immediately if not sooner and if white cell count is still high discuss result with doctor and ask about taking marrow biopsy test to look for Philadelphia gene to rule out leukemia (CML). Chances are not high for having leukemia as there is only about 453 new cases in Canada a year, or 2500 in the USA, so take heart it is very rare and it is far more likely you could have/had a kidney or bladder infection leading to passing of kidney stones accounting for the blood in urine and the still high white counts from fighting off the infection.


Hey even if it is leukemia it is not as bad or dire a condition as it used to be; people can survive on Gleevec, Spyrcel now for years and years, and more breakthroughs are comming everyday. What you can't survive is not getting the right answers, living with all the stress of not knowing what's happening to you, or not getting lifesaving treatment you may need. The period of May thru August has been tough for a lot of people health wise, so I feel your pain. Hope things improve and you get your answers...

What about ALL and AML Leukemia? There are, unfortunately, other types of leukemia besides CML. The only treatment for AML is a bone marrow transplant, and even then, the odds aren't always so great. My little boy died from AML/Monosomy 7 that relapsed after bone marrow transplant. In his case, it was 15 months from beginning to end. Accute Leukemias can swift and deadly. Please go see a hematologist SOON. It may be nothing, but much better to be safe than sorry.

They kept telling me that my child was just anemic, and even the first bone marrow asperation (after a trip to the ICU,) didn't show anything. It took almost two months for his AML symptoms to truly present themselves so that a correct diagnosis could be made.

[Anita18]

What about ALL and AML Leukemia? There are, unfortunately, other types of leukemia besides CML. The only treatment for AML is a bone marrow transplant, and even then, the odds aren't always so great. My little boy died from AML/Monosomy 7 that relapsed after bone marrow transplant. In his case, it was 15 months from beginning to end. Accute Leukemias can swift and deadly. Please go see a hematologist SOON. It may be nothing, but much better to be safe than sorry.

They kept telling me that my child was just anemic, and even the first bone marrow asperation (after a trip to the ICU,) didn't show anything. It took almost two months for his AML symptoms to truly present themselves so that a correct diagnosis could be made.

I'm so sorry to hear about your son.

And yeah, it's good to at least cross off the possibility.

[ArtisticFan]

Thanks for all the suggestions and advice. I called and spoke with the nurse practitioner, as the doctor was off this afternoon. After explaining to her that I had some concerns about the wait and see approach that has been going on for quite a while now and that I wanted to see if perhaps other tests could tell me more about what is causing my symptoms, she did agree that it might be a good idea.

I am fortunate that my insurance does not require a referral. I spent my break today making a few phone calls. I have an appointment in September with my former gastro doctor, who I saw before I had moved north of Atlanta. I also made an appointment in October with an endocrinologist who came highly recommended by some people at work. While I was told some years ago that hypothyroidism could be an issue with me, I had never gone to see one.

Finally, I have made an appointment with a hematologist in about two weeks. She is the same woman who has been treating my mother and I have found her to be very caring and interested in her patients. I explained over the phone that I am not sure that I need to see a hematologist, but that I would just like someone to look at my recent results and do some blood work of his/her own to see if I have a reason to be concerned.

I did get some results back today from the urologist. The CT Scan showed no abnormalities in my kidneys or bladder. I am scheduled to have a cystoscopy on Tuesday - hoping that is not as painful as it sounds. He also said he had received my records from my previous urologist and that I had been showing trace to substantial amounts of blood in my urine for 12 years now. He told me that the next test would look into that, but that I shouldn't worry because if it was something that would kill me - I'd be dead already. Gotta love his sense of humor.

I do appreciate all the comments and advice. It has taken me a while to admit that I haven't been feeling well, but I know I need to figure out what I can do to change that. I don't have anything against my current primary care doctor. I just feel like I'm chasing my tail by putting patches on one symptom after another, but never finding the cause of it. If there is an overall cause, I want and need to know what it is. If there isn't, that's ok too.

[Anita18]

Great to hear you've gotten the ball rolling! Good luck!

[ArtisticFan]

more likely you could have/had a kidney or bladder infection leading to passing of kidney stones accounting for the blood in urine and the still high white counts from fighting off the infection. I have explored that possibility. It is one of the reasons that I have seen a urologist for the past few years and recently changed to one closer to where I live. Because of the high white cell counts and blood in my urine, doctors have been quick to say that I have a UTI or kidney infection. However, when other results come back they tend to say that I didn't have an infection after all. I have had kidney stones in the past - trouble getting diagnosed with them too. I know the pain, but end up arguing to get it diagnosed because they tell me it is more than likely an infection rather than a stone.


Weight gain could be due to retaining water from recent improper kidney function or perhaps a diabetic issue or the thryroid condition, even the meds could be causing the weight gain are you sure you are not pregnant or even a tubular pregnancy or adding cysts considering your menstrual issues? I know I'm not pregnant. In addition to my birth control pills, my husband is working out of town currently. I haven't had enough energy to have an affair I've been tested for polycystic ovarian syndrome, but the results were negative. Numerous ultrasounds have not revealed an issue with cysts. I usually have one or two, but they disappear by the next test. I should clarify about my thyroid issues. My original PCP felt a goiter on my thyroid and ordered blood tests. They came back as normal, but because my father and nine of my cousins presented similarly, he went ahead and put me on thyroid meds. Subsequent doctors have run the same tests, which have come back normal, and kept me on the medication. I have never been given a reason that I have the symptoms but the tests say I should be normal. All of the doctors have just shrugged and said it is not a big deal.

Have you ever been tested for Lupus? Have you had blood clotting or heavy bleeding issues before? I have not been tested for Lupus. The blood clotting and heavy bleeding have started as new symptoms in the last 6-8 months. I have been getting nosebleeds that don't seem to want to stop and issues if I cut myself accidentally. I hadn't really put them together or thought about them until the incident with the IV. To be honest the others were annoying, but not something I was concerned about. The hand incident scared me quite a bit. They had already bandaged my hand and were guiding me out of the maze of the hospital when I looked down at my hand because it felt so warm. It seemed like there was blood everywhere. Someone helped me sit down and they all rushed toward me to clean up my hand and get the bleeding to stop, but all I kept doing was staring at it and thinking that this was not good.

[Allskate]

I should clarify about my thyroid issues. My original PCP felt a goiter on my thyroid and ordered blood tests. They came back as normal, but because my father and nine of my cousins presented similarly, he went ahead and put me on thyroid meds. Subsequent doctors have run the same tests, which have come back normal, and kept me on the medication. I have never been given a reason that I have the symptoms but the tests say I should be normal. All of the doctors have just shrugged and said it is not a big deal.

From what I've learned, different tests and different labs have different cutoffs for what is considered "normal." Thyroid problems tend to be underdiagnosed partly because of this. Also, many of the best endocrinologists think that was is "normal" varies by person and that test results alone are not enough to rule out problems. A friend of mine saw one of the foremost expert endocrinologists. Her original tests/lab/doctor put her in borderline normal. He determined that her thyroid had been damaged by her radiation treatment, gave her meds, and she is now feeling much better. So, that's why a good endocrinologist who really knows thyroid issues is so important.

I hope you get answers and a solution soon. It sounds like you're at least headed in the right direction with all these doctors appointments.

[Patsy]

Wondering if perhaps an internal medicine practitioner could help sort things out? Glad you're getting after things.

nubka, my condolences to you on your loss.

[LilJen]

ArtisticFan, I thought of something else to keep an eye on. You didn't say whether you were still vomiting daily, but if you are, be very careful to rinse and brush your teeth often. TMI, perhaps, but vomit can really damage teeth (in fact some bulemics go undiagnosed until their dentists notice the damage from months or years of repeated vomiting).

Please take good care of yourself and I hope you get some answers soon.

[Myskate]

I'm not a doctor either but have worked in a medical laboratory for 25 years running blood tests. When they check your white cell count and it is elevated, there should be a differential done also which will tell the Dr. what kind of white blood cells you have. Increased neutrophils are usually due to a bacterial infection. Abnormal lymphocytes can mean mononucleosis. Are your platelets decreased? This can cause the kind of bleeding you had.

Hopefully your hematologist will really look at your results and explain them to you. If you don't understand--ask. Don't let someone tell you not to worry about it. You already are. Good luck and hope you are well.