Deciphering Test Results

As a result of my RA and its treatment, I need to get blood work done every two months, or more often. How fun.

Yesterday I went for my first blood work of 2017 to find out that the doctor's standing orders in the hospital's computer system ended at the end of 2016. I had to call my doctor to get them reinstated. Then the tech tried three times in my elbow (I have little scrawny veins and only one available arm after chemo) before trying twice in the back of my hand before getting in.

Now I have the results back and I am trying to decipher them. What exactly do they mean? I know a few of them, but not all:

• My red blood counts never recovered from chemo
• My CRP (c-reactive protein, a sign of inflammation and RA) is elevated.

And the rest of it, some in normal ranges and some not, don't make much sense to me. I see my rheumatologist next week and I am sure she will say 'helpful' things like: 'your blood counts are pretty good but I see the elevated inflammation'.

I'll wait until I see her next week to learn the rest.

My doctor confused me

I went for blood work last week for two doctors. As usual I got the results the next day, or so I thought. This morning I got more blood work results back. And I don't understand them.

These are more thyroid blood tests. Originally I got my TSH level back. Then this morning I got T4, thyroglobulin AB and thyroglobulin. I didn't get my T3 levels. I don't always get all these thyroid tests done so I don't understand them as well as my TSH levels.

And why all of a sudden do I get all these blood tests? To be fair, the hospital switched to a new computer system last year with a patient portal where I get my test results directly instead of getting them from my doctor's office or the records office. So maybe they did these tests and I just wasn't aware.

So it means I definitely need to call my doctor about them.... But I'll give her until the end of the week to contact me first.

I think its a vast medical conspiracy to confuse the patients. I have been blogging about this for years. If you can't cure them, confuse them.

Stupid blood work

I get blood work done all the time, or so it feels. Actually its about every two months for one doctor, every six months (or two or six weeks if there is a medication change for another), and then for anyone else who wants it. Sometimes I feel like there is a vampire who wants my blood.

Yesterday I had to go for blood work for one doctor's appointment next week and for another doctor's follow up request. I can't just go for blood work. I need to plan its so its before my weekly injections. Anyway I got the results this morning.

My thyroid tests are way off. This means my endocrinologist will call and probably want to change my dosage or at least have questions for me since the last time I had this test done my results were completely different than this or from the time before. Think yoyo results.

My CBC is partly okay and partly worse than normal. My MTX levels (the blood work you need with on methotrexate for my rheumatoid) are also partly okay and partly worse than normal. This means my rheumatologist may also make changes when I see her next week. Both changes, if they happen, will require additional blood work to follow the results.

I hate going for blood work. Its complicated (see above). I hate needles. They can only use one arm so options are limited. I have scrawny veins in my elbow so sometimes they have to 'look around'. Or if they wimp out, they use the big vein on the back of my hand - which is painful. Then I get to play the 'let's see what the latest results are' game and see if I need more medication changes. And go for more blood work.

The new doctor

So I met my new primary care yesterday. I think I like her. What's interesting is that what she is concerned about with my health are not the same things as my other doctors.

First of all she called me anemic. My red blood levels have never been the same since chemotherapy. Even though my last chemo was in December of 2007. No one else has ever said something about it. But she said its not that bad since its within one standard deviation of normal (that took some recall of calculus and statistics to make sense).

Second of all, she was interested in what she called my missing blood counts - Vitamin D, Vitamin B12, cholesterol, and more. So I am going for a whole pile of blood tests probably tomorrow morning because they require fasting.

Third she wants to see me with all my test results in about a month to get back to me.

Finally, she talks a lot. But she also listens. So I guess this has a chance.

Call me optimistic.

Damn those pesky blood tests

Yesterday my plan was to go to my therapist and then get some blood work done for my rheumatologist. The hospital switched to a new software program with a new patient interface. I like the interface because I can see all my upcoming appointments and test results and all sorts of fun stuff.

When I saw my rheumatologist earlier this month we agreed to switch around my meds which meant more blood tests. I had made a note of getting my blood work done yesterday but realized I never got any notification on my planned blood work. I decided I should call to find out if they were really scheduled. And they weren't. But because I called, they were happy to put them in the computer.

So I went for my blood work after my new therapist urged me yet again to go to a different support group on how to relax more. This morning I got the result. And they suck. To be honest.

This means my plan to switch away from methotrexate and the forever and ever colds may not work. Damn those pesky blood tests. Damn.

Blood test for cancer?

[Did you take the survey yet on who reads blogs? There's still time. I'm sure you meant to go back and complete it later so here is a gentle reminder. You only have 9 more days. Go take the damn survey! http://fluidsurveys.com/s/blogimpact/]

So I am pleasantly surprised to learn about this new blood test that can detect cancer without a biopsy. They call it a liquid biopsy. Basically it means that they hope that cancer can be detected before its noticeable. This is not the same as the blood biopsy I blogged about the other day for breast cancer. This is something else that is new.

It has been tested on patients with lymphoma and one woman with lung cancer.

"The hope is that a blood draw — far less onerous than a traditional biopsy or a CT scan — will enable oncologists to quickly figure out whether a treatment is working and, if it is, to continue monitoring in case the cancer develops resistance. Failing treatments could be ended quickly, sparing patients side effects and allowing doctors to try alternatives."

This means that patients wont have to wait for months to see if their cancer treatment is working. They can be monitored through blood tests. And recurrences of lymphoma were detected three months before they were noticeable.

Of course more research is needed but things look good. Personally, while I am not a fan of too much blood work, I much prefer them to other tests or biopsies.

Doing my research

Every so often, I get the good idea to get my medical reports and review them myself. I do this because people tell me I should have the copies of my test results. I try to do what I am told, am often curious, and too impatient to wait for the doctor to tell me at our next visit.

Then I take my little reports home with me and try to decipher them. Why is my RBC below normal? Answer it has never recovered since chemo and it is just under normal. Some of the other tests I do not really understand. I do some research and end up at medical articles where I need to go to med school to be able to decipher.

At some point, I always say to myself "Why am I doing this anyway?" Sometimes I convince myself I have some deadly disease or ailment that will kill me without immediate treatment. Other times I convince myself that I really am healthy with just a few bad test results.

But my point is that I do my research and feel I should more frequently get my test results and monitor them better. For example my last blood test included my C-Reactive protein measurement. This is what tells the level of my rheumatoid and whether I am experiencing a flare up or not.

Unfortunately I don't think I have enough of my blood test results. But need to dig through my files to see what they have been in the past so I can continue to track them. Then I can continue to do research and see if I am going to live or not.

Or I can just continue to self diagnose myself into every ailment known to man.

Inflammation and me

A few weeks ago I had my evil toe infection and was on antibiotics which meant I was off  Methotrexate for three weeks. Methotrexate keeps my RA and its inflammation in check. But antibiotics and MX don't work together. Or if I feel I am getting a cold, I am not supposed to take my MX either.

So week one I felt like I was getting a cold so I skipped it. Week two my stupid toe started and I was on antibiotics so I skipped it. Week three I was still on antibiotics for my stupid toe so I skipped it. Then I had two weeks of my MX injections. Then I went for my regular blood work on Tuesday to check my blood for evil things related to RA and its treatment. No big deal.

Then Wednesday I am happily cooking away, having fun, enjoying myself, and I missed a phone call. I checked my voice mail a few minutes later to find one of  'those' messages.

"Hi this is Debbie from Dr. K's office calling about your blood work yesterday. Can you please call us when you can? We are here today till 430 and then back on Friday. Its not urgent (hah!) but please call."

Of course, I called immediately. I hate those messages with so much subtext behind them. Debbie answered and said she had the results of my blood work and wanted to talk to me about them.

Apparently my inflammation levels were up and she wanted to know if I was in the middle of a bad flare up. I said no, more of the usual but nothing bad. But then I told her I had been off MX for three weeks and only back on it for two weeks. She felt that would account for the increased levels but to be sure to keep my appointment with Dr K next week.

So its only inflammation but it would make sense that I have been feeling like crap. And yes I'll keep my appointment.

Today my attitude is "I don't care"

I would have started with some extra adjectives in there but didn't think they were appropriate for the title. How has my week gone? Well if you are reading my posts, you can tell it hasn't been the best week. By the time I got to work yesterday afternoon my co-workers said I looked either very tired or "enough already".

But I still had to work for the afternoon and go car shopping. I was exhausted before car shopping and ended up in bed early - maybe I am over this 'spring forward' crap.

What was the medical roller coaster like yesterday? Hmmm well the part about me was that my doctor's office called about my blood counts and one of them is a 'bit' off and they had questions for me. Of course the doctor is on vacation so they will get back to me next week.

This morning I go to the neurologist to learn what the hell is going on with my hands and what is known as 'bilateral tingling' in medical speak. And it could come back with another 'I don't know' and more tests or an express pass to the hand surgeon for carpal tunnel surgery. Whatever the answer is, I am not very comfortable with this as I associate neurologists with needles and nasty tests.

After that I go to work. As a result of the current car issues (anyone want to buy a car?) I am driving my father's baby - which is a brand new electric Prius with only 4000 miles on it. I am petrified something will happen to it and I will be disowned. He has been to sick to drive so it is actually very nice that I can use it for a few days while we figure out the new to us car business.

I hope to get to the gym this afternoon to work off some stress but am not sure if that will happen because we have to go back to the car dealership and see if we can make a decision. Which car, how much to spend or do we move over to another dealer?

I don't care. I have tuna fish on a salad for lunch which I enjoy. That might make me feel better and less stressed. But other wise I really don't care.

I think I'm going for apathy today to avoid undue stress.

Blood tests for breast cancer?

You mean maybe we could skip the annual mammogram and just have another blood test? That would be too cool. Now I couldn't read the article without subscribing to another magazine but suffice to say the abstract is promising enough:

"A new blood test may be able to detect the early stages of breast cancer, researchers say. Scheduled to begin vigorous clinical testing in early 2014, the test successfully identified the presence of breast cancer cells from serum biomarkers in preliminary testing, a huge step forward that could make breast cancer testing more widespread and more regularly detected early..."

Wouldn't it be nice if a test could be replaced by a blood test? How much money would be saved? How much time could be saved? Mammograms and MRIs only after an older age - 55? - or for high risk groups? This is something I would call progress - of the good kind.

Blah, blah, blah - with your medical history we have to be sure

Yesterday I had my annual physical. Or Woman Wellness Exam or whatever the correct term is for it these days.

It did start off interestingly while I was waiting to check in at the desk, there was a woman who was being told she can't call the doctor's office every day making demands, should go back to her psychiatrist, and perhaps become an inpatient at a psychiatric facility. We'll just say that I was very happy that was not me. My health/mental stability is not that bad.

My primary care, who I like, just had a baby and is out for the summer on maternity leave so I met with her nurse practitioner who was one I had not met before. She was very nice and very thorough in her questioning after she let me go through my list of questions. We talked about my ganglion cyst which makes my wrist hurt, we talked about my arthritis, we talked about back pain, car accident, back procedures, previous surgeries, my general health, how much I exercise, and more. Then she examined me and thought I was pretty normal (wow!).

I left with two to-do items - one is a cholesterol blood test which can be done the next time I have blood work done - every two months for rheumatoid, every six months for thyroid - so whenever the next one rolls around.

The other is a much bigger test (where I might feel a 'little pinch') that she wants done in the next two weeks. I can understand wanting the test but I didn't realize she considered it to be more urgent. That part I don't like. I'm not looking forward to the test itself but really dislike it when I have tests which must be done right away.

Grrr.... All the little 'what if' voices in your head start to kick in when I have 'urgent' tests.

It is scheduled for July 5 - which is fine because we had no plans to go away for the weekend - which is 2 1/2 weeks. I have no idea why it is so urgent. But of course I get to stress about it. I will take my avoidance mode until then and discuss it in more detail when I feel like it.

Cancer blood test

Here's some more promising news. A group in Kansas has developed a blood test which can detect breast and lung cancer in its early stages. This is cool.

Cancer caught in its earlier stages leads to better outcomes. Breast cancer is most often caught in stage II and lung cancer in stage III or IV. If a blood test can catch breast cancer in stage 0 or I and lung cancer in stage I or II, more people will live longer.  They are also testing it on pancreatic cancer.

This means high risk groups could get regular blood tests as screening for these cancers.

However, (of course there is a caveat) it is a relatively small study and it is not yet approved.  But it might mean moving to Kansas is a good idea.

I did not get the math class

I did not get the thyroid cancer math class. I am sorry. I can't remember it all. I get confused. I fake it and pretend I understand. But I don't.

I am blaming a combination of chemo brain and the fact that when I had thyroid cancer the world was different my doctors just gave me a Synthroid (synthetic thyroid hormone) dose and never explained numbers. Every so often they would look at my blood test results and say 'hmmm, let's adjust your dose'. Part of that was because that back then Synthroid was not available in a million different dose levels. I think it was just 100 mcg or 200 mcg. Now its available in doses of everything from 37.5, 50, 75, 87, 100, 125, 150, 175, 200 mcg and many more.

At my last appointment with my endocrinologist, my TSH level was a little too low. It was .22 and should be at the low end of the normal range of .35 to 4.5. So instead of taking 1/2 a pill once a week my dose was reduced by another 1/2 pill a week and as a result my TSH level went up to .53 which is in the acceptable range. When they decrease your dose, your levels go up - just to make it confusing.

My doctor pulled out a calculator to figure out what the dose should be. Should I go down to 125 mcg with a half pill once a week or go with 137 mcg and take a half pill twice a week? This way I am getting an average of 117.4 mcg each day. If I went to 125 mcg and took 1/2 a pill once a week I would be at 116.1 mcg which she thought was too low. She asked me if I used a daily pill box before deciding what the dose should be.

Then there are T3 and T4 levels that need to be monitored and kept to barely detectable levels so I don't remember those numbers either. These are monitored because if they are detectable it could be a sign of recurrence (I think).

If you go to the thyroid cancer message boards there are all these people asking about changing TSH, T3, and T4 levels and another test that I cant remember. They ask about why they go up and down, should they change their drug levels or change their doctors or change something else. What happens when you gain or lose weight or get pregnant or go vegetarian or all sorts of things. And its all about the numbers. I never comment on those discussions. I read them and think 'some day this will all make sense'.

But it appears it will never make any more sense than professional football rules to me. I have both explained to me a million times and I still don't get it. Back when I was in my 20's. I would get together with a friend for drinks often on Monday nights. We would sit at the bar and the bartender and some nice men would always explain foot ball too us. We lied and pretended we understood but never really did.

I think I am okay with this. I get my blood tests. My doctors explain them to me. Its one less thing to worry about.

When doctors don't listen

About a month ago, I complained about Dr B who blamed me for my high blood pressure. He has been collecting cases of high blood pressure for his entire career, only found 11, and blamed me for my high blood pressure. The only test he did was to take my blood pressure. I am not sure he even read my chart.

I found out a few days later that my thyroid levels were messed up and could contribute to high blood pressure as well. Hypothyroidism can cause the bottom blood pressure number to go up. Hyperthyroidism can cause the top blood pressure number to go up. Then my next blood tests showed my thyroid levels in the normal range. So that theory was put to rest. But I did gloat a tiny bit.

Well, I have found out all sorts of things in the past few days about how badly he listened.

First I found out that he filed two reports in my medical record - one was for another patient who had come to see him about a rash. So when he typed up his notes in the electronic medical system he couldn't even get that part right.

Then I went to the follow up appointment he arranged for me with a blood pressure specialist yesterday. I learned a few things in addition:

- My thyroid levels are up and down and up and down and require monitoring and be stabilized. A longer term project but can definitely affect my blood pressure as I noted above.
- Two of my medications should not be taken together and can affect my blood pressure as well. One is a back pain medication that is working very well. The other is an antidepressant that my doctor had consulted some one else about before putting me back on it with my back pain medication.

So the plan is to meet with my psychologist this week and straighten out my anti depressant. I don't care what she says that in her opinion they can be taken together. I don't want to take something that could have a major interaction with my back pain medication.

Next I will continue my monthly blood tests to get my thyroid levels straightened out. I see my endocrinologist in July and if the monthly tests are continued by then we'll have more data.

In the meantime, I am gloating about Dr. B with the ego who blamed me and missed the opportunity to 'collect' another patient with a secondary cause of high blood pressure. Maybe that's why he doesn't have very many.

But I'm still confused

Last night I was surfing online and came across a great resource - decoding your blood counts. I was so excited. This explains what the list they send me after blood tests mean. I looked around and pointed it out to my husband who agreed that he didn't really understand a lot of it either. In my rush to be enlightened, I pulled out my latest blood test and compared. I don't feel enlightened. In fact, I still feel confused.

Truth be told, now I understand better what the individual numbers mean but I don't really understand the big picture. What do my blood counts mean? Now, most are in the normal range which I can deal with but then there are the ones where normal is greater or less than something. Well, what does it mean if you are a lot more or less as opposed to only a little more or less? Then I read the disclaimer at the top of the page: "Interpretation of the results is strictly the province of a medical professional." Okay, so I guess I go back to being a patient patient and ask questions at my doctor's visits.

This morning I am up extremely early because I was so smart and scheduled a neck ultrasound for 730 this morning. A neck ultrasound is the new protocol for following up thyroid cancer. Apparently they can tell about some recurrences through blood tests but they also need ultrasounds for others. When I say new, it means that 20 years ago, they weren't doing ultrasounds as frequently. I don't believe I have ever had one before but there is a possibility I did back in 1981 before surgery. I can't remember. This counts as my first one essentially. I don't really know what to expect. I have asked some friends with thyroid cancer who have been through them and they all say its no big deal so I am not really concerned. The odds for thyroid cancer recurrence after so many years are small but it is still possible. Cancer is the gift that keeps on giving and there are cases of thyroid cancer recurring more than 40-45 years later and now these are part of the standard protocol for follow up - every five years. My real question is: what if it tickles? I'll just have to suck it up and deal.

Doesn't this sound like fun?

A MUGA scan is sounding more and more exciting the more I learn about it. First of all, they dont give you an injection. They draw some blood, mix it with a radioisotope and reinject it in you. Then, you are not given an x-ray but are under a gamma camera where you have to remain completely still and you get an ECG at the same time. This takes 30-60 minutes. Lastly, there are resting MUGA scans and stress MUGA scans. The stress ones are on a stationary bike or something. Hmmm.. If the test takes three hours and the resting part only takes 30-60 minutes, I suspect I get the stress part too.

And the best part is before I go to this I get my teeth cleaned and probably a filling! Yippee! Yahoo! NOT! Ice cream for dinner to recuperate? Maybe Fritos and onion dip....

Oh, even better, apparently, you get this test more than once as you go through chemo to monitor for heart damage. Something else to look forward to!