Yup I now have a label. Still not entirely sure what that means but know its definitely not conducive to fertility and going to be costly for me. Outcome of my follow up with my OB/GYN was that she agreed my latest ultrasound didn't tell us anything new and really nothing at all but was a good conversation piece when we were talking about IUD vs Surgery. Now that I have finished treatment there are things we need to decide and one is my path moving forward for Endo, my other random anomalies (ectopic ovary, hydrosalpinx and my kidney remnant and if they create risk, surgery is risky, a Jaydess (smaller form of Mirena) may pose its own problems. My OB/GYN was also curious to see if I was entering early menopause by running fertility bloods...my AMH came back at 42 (was 44 in 2015) so has dropped but is still double what it was when I did IVF?? Everyone keeps telling me that is fine, but I don't actually think that is based on what I have read, for my age that is what we call higher than average... can be a precursor for PCOS or granulosa cell tumors so lets hope its just really that I'm abnormal haha. She is getting her ducks in a row so she could take my 'complex' case to a multiple disciplinary meeting the following week. Also wanted to wait to see if my Neutropenia has improved, currently i don't have an immune system ... now that is a whole other story!
Neutropenia is a blood condition characterized by low levels of neutrophils. Neutrophils are a common type of white blood cell important to fighting off infections — particularly those caused by bacteria. For adults, counts of less than 1,500 neutrophils per microliter of blood are considered to be neutropenia.
Mine are borderline but at this stage we wont worry too much unless they dip below 1,000. Latest results from past 12 months.
Based on the SCL range of 1.9 - 7.5:
24.01.19 = 1.7
11.01.19 = 1.5
30.11.18 = 4.3
07.06.18 = 2.1
24.05.18 = 1.6
20.05.15 = 1.9
07.08.15 = 2.1
So situation is that we don't know what is causing the issue, whether it is chronic or if it will get better on its own so we will be starting 3 months tests at least till it has improves, obviously its not low enough to make me really sick but if if heads that way i might need medication, not much i can do to improve it at this stage. I'm getting some bloods tomorrow to see if we can figure out a cause? the test will be for the below (don't stress about some of those, I'm not! I think they are just routine)...
Anti-nuclear antibodies (ANA)
Rheumatoid factor
B12
Folate
Serum protein electrophoresis (SPE)
HIV
Liver enzymes
Hepatitis B
In the meantime I saw the GP today to talk about my low BP (Blood Pressure/Hypotension). We have decided that the number isn't as much of an issue than the symptoms... so will be keeping eye on my dizziness, fluid intake etc moving forward. Its been ranging from 88-110 systolic so that is now my new normal.
What's considered low blood pressure for you may be normal for someone else. Most doctors consider blood pressure too low only if it causes symptoms. Some experts define low blood pressure as readings lower than 90 mm Hg systolic or 60 mm Hg diastolic. If either number is below that, your pressure is lower than normal.
We also talked about the reply from my OB/GYN that we happened to get during the appointment, she is still not entirely happy with making a decision at this point until they have researched a bit more. I am the first one they have seen at their practice with a Unicornuate Uterus with Renal Agenesis and an Ectopic Ovary. I was discussed at their Collegial Morbidity Meeting with my previous OB/GYN and even he said that he would like to research more. They are unsure they will be able to safely remove my right ovary, whether it has a risk for being malignant. We may be starting with a Jaydess sooner rather than later and seeing how we go, its the pain that Im worried about, I could do with less of that.
So - there will be a few more updates to come, especially once these bloods come in, who knows where this journey will take me next.
Neutropenia is a blood condition characterized by low levels of neutrophils. Neutrophils are a common type of white blood cell important to fighting off infections — particularly those caused by bacteria. For adults, counts of less than 1,500 neutrophils per microliter of blood are considered to be neutropenia.
Mine are borderline but at this stage we wont worry too much unless they dip below 1,000. Latest results from past 12 months.
Based on the SCL range of 1.9 - 7.5:
24.01.19 = 1.7
11.01.19 = 1.5
30.11.18 = 4.3
07.06.18 = 2.1
24.05.18 = 1.6
20.05.15 = 1.9
07.08.15 = 2.1
So situation is that we don't know what is causing the issue, whether it is chronic or if it will get better on its own so we will be starting 3 months tests at least till it has improves, obviously its not low enough to make me really sick but if if heads that way i might need medication, not much i can do to improve it at this stage. I'm getting some bloods tomorrow to see if we can figure out a cause? the test will be for the below (don't stress about some of those, I'm not! I think they are just routine)...
Anti-nuclear antibodies (ANA)
Rheumatoid factor
B12
Folate
Serum protein electrophoresis (SPE)
HIV
Liver enzymes
Hepatitis B
In the meantime I saw the GP today to talk about my low BP (Blood Pressure/Hypotension). We have decided that the number isn't as much of an issue than the symptoms... so will be keeping eye on my dizziness, fluid intake etc moving forward. Its been ranging from 88-110 systolic so that is now my new normal.
What's considered low blood pressure for you may be normal for someone else. Most doctors consider blood pressure too low only if it causes symptoms. Some experts define low blood pressure as readings lower than 90 mm Hg systolic or 60 mm Hg diastolic. If either number is below that, your pressure is lower than normal.
We also talked about the reply from my OB/GYN that we happened to get during the appointment, she is still not entirely happy with making a decision at this point until they have researched a bit more. I am the first one they have seen at their practice with a Unicornuate Uterus with Renal Agenesis and an Ectopic Ovary. I was discussed at their Collegial Morbidity Meeting with my previous OB/GYN and even he said that he would like to research more. They are unsure they will be able to safely remove my right ovary, whether it has a risk for being malignant. We may be starting with a Jaydess sooner rather than later and seeing how we go, its the pain that Im worried about, I could do with less of that.
So - there will be a few more updates to come, especially once these bloods come in, who knows where this journey will take me next.
