When my foot was infected, I had a culture and about 2 weeks later, an MRI. I was told that the infection was gone and they stopped the antibiotics and put on a wound vac. The wound vac should not have been used while I still had osteomyelitis. Things kept getting progressively worse and I decided to switch doctors. When I got copies of my records, I found out that both the culture and the MRI said that I still had the infection. The culture was done at the end of December and the MRI the beginning of January. It was not until the end of February that I decided to change doctors. I also landed in the hospital the day I decided I was switching doctors.
While I was in the hospital, they did another MRI. I had to take my records and the MRIs to the new doctor. Although I did not look at the MRIs myself, my sister is a nurse and both her and her husband did – they both said that there was a big difference between the MRI at the beginning of January and the MRI at the end of February. When I saw the new doctor, he told me that my bone was mush. Although no one has said it, I am sure it was because of the wound vac being put on my foot while still having osteomyelitis. I obviously have no way of knowing whether the infection would have continued getting worse even with antibiotics, but I can’t imagine that it would have been worse than what it was and I am sure that I would not have to deal with what I do today had my foot been properly treated.
Last summer, I was having thyroid problems. I was supposed to go for labs about a week before my doctor’s appointment. They had to reschedule my appointment and when I called about my labs, I was told that my protein levels were low and that was secondary to my thyroid problems. The problem with that was they only checked thyroid and if my protein levels were low, why was I not told about that two months earlier when I was there. When I called about labs both times, I was told everything was normal. There were a couple tests I asked specific numbers and at the time, I did not realize that the TSH means nothing so that was the only thyroid test that I asked about.
I asked to get copies of the two sets of labs they had done (I had just switched to that doctor). When I got the labs, there was nothing that included protein. I called to ask and the person I talked to that time said she could not see where that had been checked. I had given them copies of labs from my prior doctor and my protein levels were fine on those labs. However, what I did find out when I got the labs was that my Free T4 was so low it was not even registering a number. When I had my appointment with the doctor, I took the labs with me and had them on my lap as she proceeded to tell me that my thyroid was fine.
She did some more blood work while I was there so I called to get a copy. When I picked them up, instead of being in the usual lab format, they had been printed out from their account with the hospital. Something did not seem right so I requested a copy of the labs from the hospital. I am glad I did because she had checked my Anti Thyroid Peroxidase (TPO). My levels were 3044 with a lab range of 0 – 9. Very nice of her to let me know that there was a problem!
The other week I went for blood work a week before seeing the doctor (different doctor). One of the things that she checked was my B12 level. She told me that my levels were in range but at the bottom of the lab range. She gives you a little note of things she would like you to do. I scanned in her note so you can see that there was no “mix-up” as she wrote “add B complex” at the top of her note. I did some research on B12 levels and found that they should be at the top of the range. I also found out that it is better to take a sublingual B than a regular tablet. I bought some liquid sublingual B and started taking it.
I now request copies of the labs directly from the hospital that I use to get blood work done – that way, I know that I will get everything and not what the doctor decided that I should get. I got the copies of my labs today and was anxious to see exactly what my number was. My B12 was 1098 with the lab range of 208 – 964. The lab flags any out of range results with an asterisk and my result had an asterisk – that should have caught her attention that it was not low! She also checked my folate and that was 15.9 with a lab range of 5.6 – 19.8 – that wasn’t at the bottom of the range either!
I know that I am not the only person that this happens to. My cousin’s father-in-law was at his PCP after pulling a tick off. He was tested for Lyme disease and told he did not have it. He kept getting sicker and sicker. Months later, his wife called their son to ask him to take his father to the ER because he was really sick. She had already missed a lot of work because of him and was worried she would lose her job.
My cousin told her husband that he should speak up when talking to the doctor. She took her mother to doctor’s appointments when she was dying from cancer and always regretted not speaking up. The ER doctor ended up calling the PCP and found out that the first test done for Lyme disease came back positive. There are two tests to be done and you do the second one if the first one comes back positive. The ER doctor did the second test but said they were going to treat it as though it was Lyme disease. Sure enough, the second test came back that he did have Lyme disease.
Besides getting copies of the labs to know for sure whether anything is out of range, you really should know your number so you can see if you are just in range or optimal. For instance, the range for ferritin at my lab is 13-150. Anything below 50 is considered critical. You could be at 20 and if you have a doctor that doesn’t understand optimal ranges, they would tell you that you were fine. I added a page with the list of tests that I have found optimal ranges for – it is along the right side labeled “Optimal Lab Values.”