I have been on treatment now for 4 months I go and have my blood work done weekly like I and suppose to to watch the hemoglobin so it does not drop. I get calls from my doctors office saying that hemoglobin is at 11 every month. I just got out of the hospital and was transfused with 3 units of blood because my hemoglobin dropped to 8 and was going lower. My question is why would a doctors office lie about something so criticle to ones health?
Sorry to hear you have been having these problems.
It is probable that the doctor's office was not lying to you. Of course, it is possible whoever called gave you the incorrect information accidentally by perhaps giving you the result from a previous date. However, your hemoglobin may have been 11 for weeks and then suddenly dropped. That happens.
I think you should discuss this with your doctor and ask why your hemoglobin was fine and then tanked. I would also ask to get copies of all of your labs. That way you can track your lab results. I get copies of mine every time I have lab drawn. It is good to have the copies regardless so you have records of them. You should also have copies of all tests such as ultrasounds and biopsies.
I hope this issue gets resolved for you and that your hemoglobin stays okay.
The hgb can drop really fast but the only way to really monitor your blood is to get copies of all blood tests. They may not want to give them to you at first, but they will get used to it. You can spot the trend that they may be ignoring. You are on victrelis, correct? The anemia hit me about week 9 which was much faster than my last treatment with SOC.
I would be curious to see your hemoglobin chart. How often are you getting the CBCs? You should be getting them weekly.
I hope you are feeling better. HGB in the 8s sounds dreadful. I can hardly handle the 9s. Mine was in the 9s for 5 weeks and then procrit brought it up to the 10s. Now I have insurance issues and have not had a shot of procrit for 3 weeks and the HGB is back in the 9s.
I don't think it's likely that your doctor's office would lie about something that is documented and easily checked. What seems more likely is that your hgb was dropping slowly into the 11's and then dropped quickly into the 8's over a week in between cbcs. You could ask your doctor for more frequent lab work or he/she may suggest that since you dropped so low. When my husband dropped down to the low 11's, he felt symptoms of anemia, even though it wasn't technically anemia. The doctor reduced his riba from 1200 to 800, he finished the 12th week of Incivek, and then his hgb started to come back up a little bit (11.4) and he feels better. The treatments are response guided, so the docs have to listen to symptoms and side effects, watch blood work, and make decisions about how to manage side effects, including dose reductions and/or rescue drugs, although with the triple therapies it seems that doctors are more likely to reduce riba or or order transfusions before adding rescue drugs. I agree with others above, talk to your doctor and tell him/her how you feel, so they can answer your question and you can have confidence in your doctor as you move forward with therapy.
Just talked with my Dr.'s Office yesterday and the one my liver center has was 9.0 and my primary care stated it was 11.0 which they have been calling me for the last several months since my blood is going to two different places. It has not been 11.0 for a long while now.
The night before I went to the ER for a nose bleed My dr.'s office called me and said that my hemoglobin was 11.0 The ER said no it was 8.0. The Dr.'s office should have seen it going down gradually but said it is always 11.0, Wrong! Where is my blood work and what have they been doing with my blood? I needed to be transfused with 3 unites of blood..
Wow, that sounds like a pretty big error for your doctor's office to make. Many doctors seem to be treating anemia in patients on triple therapy with dose reductions in riba and then transfusions rather than prescribing procrit. It seems like trying a dose reduction before letting you drop to the stage where you needed a transfusion would have been a better option. I guess if I were you, I would want to know why your doctor told you your hgb was 11 when it was actually 9 and why he/she didn't manage your anemia before letting you get so sick. Here is some info that another forum member shared regarding management of anemia, and I posted it in my journal:
We, me and the liver ctr. went to Sonora Quest LAB and seen the levels drop from 11.0 to 9.0 and still getting calls saying my levels are 11.0 from the dr.'s office, really confused but now am recording all calls.
My last hgb was at 8.6; hep doc said if it continued to drop would I consider terminating tx-NO!! Cbc done yesterday and waiting to get updated labs. Riba now cut back by 50%; thyroid still not under control, so I'm fat, bald, and cold-rats!
Something is wrong at your doctor's office. Either the doctor is not reading the lab results carefully, or whoever is supposed to contact you is not reading the lab results carefully, or the communication from Quest to your doctor's office isn't accurate. Would it be a good idea to ask Quest to send you copies of all of your lab results, and then ask your doctor to send you copies of all of your lab results? If it is an error in your doctor's office, I would be very concerned about future care and whether or not they will be monitoring you closely enough as is required for triple therapy. I'm sorry this happened to you, but I'm glad you got proper treatment in the ER when you got so sick.
There may be a typo on this part of Hectors post "Monitor closely if Hb falls 12 g/dL" it should read 10g/dl. Don't want anyone getting the wrong numbers and I know for sure it was just a typo on Hectors part.
Yes, this is exactly what HectorSF said in his original post. I looked at the module on Clinical Care Options, and in the section on management of anemia it says that doctors treating with triple (either one) should monitor hgb levels carefully, manage anemia first with riba reduction, and do frequent cbcs to avoid the need for transfusions. It also states that drops in hgb > 3g/dL are a good predictor for SVR. In my husband's case, his NP did a riba dose reduction when his hgb was at about 11.1.
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