OPTK Adventures... and Sucky Doctors...

Ever Feel Like Doctors treat you like you don't know your own body? Do you ever feel like unless you slap documentation into your doctor's face, they don't believe you have a medical condition and were misdiagnosed. Yes, well, that is the issue with me. I have a large amount of health conditions, that are not documented properly, and as such, have to argue with my doctors to provide me the care I need. When it gets to that point, it is basically time to get a different doctor. But I will get to that towards the end of this blog.

I've been trying to get into my Endocrinologists office since August, but between her going on vacation, and never being available to set up an appointment, its been frustrating. I have an appointment with her colleague Dr Kong on November 23rd, where I am going to basically tell them where to go, if I can get into Elliot Endocrinology, because to me, it is important to have a doctor available for you, and this appointment is to go over July's lab results, in almost December? Really? December 1st will be my 6 months on Metformin, and if all goes right, I will end up pregnant this cycle, but that's a different story. My vent is merely the fact that these doctors at Dartmouth Hitchcock are STUPID. But I'll get back to that.

Below are images of my OPTK's for this month. With PCOS, OPTK's are often misleading, but I have never had more than 3 positive OPTK's myself. I was annov during the month of September, so to be getting results that seem so regular to me, are kinda... worrisome... I say worrisome because It makes me think their inaccurate.

I read some where that you need to start taking OPTK's on cycle day 10. I did so this month, and got 3 positives, and than today was negative.

My chart indicates I ovulated on CD14, but I think it occured more so on CD15 than anything. We're hoping this month is it.

This is my present chart...

Atleast I know my cycles are somewhat normal... but I must say after being ANNOV in September, and Ovulating in August, but having that 70 CD between August and September, it was annoying. I hope that never happens again. The cramps this cycle were HELL ON EARTH.

I get asked the question alot when people wonder why it is so important for me to try. I often respond with because I have to worry about if I don't try and get pregnant, what will happen. I have Factor V Leiden Heterozygous, and I also have MTHFR, another type of mutation, so its almost certain that I will need to be on Lovonox/Heparin during a pregnancy and during postpartum.

I will take a moment to vent here...

I was seen recently through Dartmouth Hitchcock Clinic - Bedford, through a doctor for High Risk OBGYN. Now, keep in mind here, I have ALL my past medical records from all previous doctors.
The reason for being seen through this doctor was because we are planning and trying for a baby, and with my past history and my PCOS, I wanted a little bit of guidance, help, and support.

I left the doctors office upset. I was basically told that I had been misdiagnosed with PCOS, and by definition did not meet the criteria for PCOS, and was not infertile. I was than asked to sign a consent for medical records release for Mass General Hospital, and for Gulf Coast Medical Center. 

I asked my doctor what she was looking for, and her response was "I need the placenta pathology records, and the autopsy report from your stillborn in 2008" Kind of shocked, I told her, okay, but I thought to myself, what does that have to do with me TTC presently? Those are previous documented things, and I was upset to be reminded of my stillborn daughter.

Now keep in mind, Florida has some retarded law where if your before a certain point of gestation, they do not issue a birth certificate, or death certificate, because it is not considered a "live birth" because the baby was not born breathing. Also keep in mind, that Jason and I signed consent forms to seal any records about Kayleigh from being released publicly and due to religious beliefs, and morals, we did not want a complete autopsy performed, so they only performed a limited medical one. I told her that I had the records she was looking for, and she responded back with this:

"Hi April, I would advise that we go forward with obtaining the records as your history is very complicated and with your prior records I can review more than just lab results: I can read and interpret the notes to lend more information to my knowledge base and better care for you. If you have any other concerns let me know. I would still recommend following up after we receive the records so that I can review them prior and with you at your next visit."

So, I felt almost like I did not have a choice in the matter, and responded to her with this:

"I understand and will allow you to request the information you need from those that I signed, but I do not know if the information you seek will be enclosed in there. MGH and Gulf Coast are usually fairly well with those things, but not sure if they will send certain information and whatnot, because we did seal off parts of my medical record at one point. Which brings me to another thing. I did sign the consent for release for the Lee County Health Dept and the District 21 Medical Examiners Office so that you all could get the pathology stuff from Kayleigh, but I do remember that we had a limited autopsy done, so I am not too sure if it will yield the information your looking for. The other thing was Lee County generally releases statistics publicly for Stillbirths, but we signed a consent that protected that part of my medical record, and allowed them from not releasing that sort of stuff to anyone other than Jason (Kayleighs Dad) and myself. SO... I am not sure they will be able to send you that stuff that you need, BUT I am saying I have those records and can bring them with me if you would like... Also, I wish to further in depth discuss with you the reason you think I do not have PCOS. I don't want to argue with you about this, but I do think and feel your wrong to state you feel I was misdiagnosed with PCOS. I have labs from my primary care doctor, from before the Metformin (I was put on this in June 2012), and labs previous to that that show otherwise hormonally. PCOS has a specific criteria. It is not just a reproductive disorder, it is an endocrine disorder, and a metabolic disorder. Every woman with PCOS has been affected with it differently. I feel almost as though you think that just because I can get pregnant so easily, does not mean I don't have PCOS. Which is incorrect, I know tons of woman who can get pregnant, on supplements like Fertibella, and Metformin, Chromium, Cinnamon ect. and end up miscarrying due to low progesterone. My labs were "normal" on Metformin, but had I been off the Metformin when they were ran, they would have been abnormal. My PCP believes I have PCOS. If you feel I do not have PCOS, than I will stop the Metformin, and have you run labs to see where I am at hormonally without the Metformin to proove the reason why I am regular is because of Metformin. I was diagnosed in 2000 with PCOS, after starting my period at age 8, and being irregular and than at age 11, they went away all together. New Hampshire Hospital did pregnancy tests to assure I was not pregnant, and than ran hormonal checks, and did an ultrasound, and they were the ones to diagnose. At the time, of course, I was thrown on Lo Orval which made things ten times worse. I stopped birth control by 17. So I am somewhat confused as to why after all these years, your the only one who disagrees with the diagnosis, especially where I was on Metformin 850mg X3 before becoming pregnant with Gabriella, and during pregnancy, and after. I did not have assistance with Clomid or Femera, but the Metformin regulated me and did the trick, and also helped with my Insulin Resistance. Also... Alex and I would like to know if you can run a pre-pregnancy carrier screening on us the next time we come in. His medical history as far as he knows is normal, but he does not see a doctor regularly. I feel like since we are TTC, we should know if either of us have any risks genetically, of passing anything onto a potential child. I was not able to do these with any of the other pregnancies, because they were not planned, but feel that a carrier screening for any genetic things should be done, since we are obviously planning this one. Let me know if it is possible to do this in your office. If not, I can pay $300 for a 23 and Me Genetic Testing Profile and bring that in, as it will be helpful. Anyway, those are my concerns... I am 99.9% certain I have PCOS, but we can discuss all of that when I bring my medical records with me to the next appointment."

She did not respond to this, surprise, surprise.

Instead, in my office notes, she wrote this:

"Pt is a 23yo G7P1151 who discontinued the IUD in April as she wanted to conceive and has not conceived since that time. She states she has PCOS and is taking Metformin prescribed by Dr. Guddette and labs 7/12 were wnl except for polycystic ovaries and mildly elevated LFT's  She has had regular menses q 30 since recording menses in June, except for her last menses which was delayed for 6wks: LMP 10/11.  Her uPt was neg then, she did use an OPK for one cycle and it was normal. Her PMH is sign for anxiety and depression and her therapists advise that she not d/c her meds in preconceptionally or with a pregnancy ongoing. She has a heterozygous Factor V thrombophilia discovered with an evaluation for recurrent pregnancy loss and a second trimester loss at 23 wks she states the autopsy for her daughter indicated a possible cardiac defect she delivered this baby in FLA and we do not have the records. She has had a term live birth and her daughter is 3yo from a different fob than presently; this daughter also has a cardiac defect: a left ventricular issue that was repaired and a PFO that is currently being evaluated. She had her Thrombophilia evaluation completed by Dr. Fogerty at MGH : we do not have those records and she states she has Factor V and MTHFR thrombophilia . She is taking a MVT daily. ImP: ? PCOS: with regular menses and normal labs unsure whether she has been appropriately diagnosed: unsure whether Metformin is indicated or assisting pt with her relatively regular menses: adv she keep a menstrual journal and return in 6wks  Possible increased risk for cardiac anomalies if pathology is confirmed with prior records: requested: in the meantime: recommended 1mg of Folic acid in addition to her daily MVT.  Thrombophilia: past available records reference a heterozygous Thrombophilia only records from Hematologist in Boston requested. Will review records at 6wk f/u. Encouraged pt to f/u to assure records are received prior to this visit. Will need LFT's rechecked if not done by other MD at n/v. 30min consult"

Now, to justify and explain things a bit here:
1. I do not actively have a blood clot. I have had 1 blood clot occur in my lifetime. That was in April 2012. I am not actively taking Coumadin/Warfarin, because it is poisonous to the body when TTC and my Hematologist advised stopping this. Instead I take 81mg of Aspirin, twice daily.
2. LFT's are liver function tests. These have always been elevated.
3. With Factor V Leiden, I am heterozygous, which means that my risk is a 3-8 fold. Than if you add MTHFR to the equation, your basically asking for Lovonox during pregnancy. MTHFR is MTHFR stands for "methylenetetrahydrofolate reductase." MTHFR is an enzyme that helps process vitamin B9, which is also called folic acid or folate. Folate helps the body breakdown, use, and make new proteins. One of folate's most important jobs involves changing an amino acid called homocysteine into another amino acid called methionine. Both of these amino acids are essential for many body functions. However, having too much homocysteine may raise your risk for a number of health conditions. When MTHFR isn't working as well as usual, it processes less folate. Less folate leads to a buildup of homocysteine. Too much homocysteine has been linked to health problems like abnormal clotting, heart disease, and some pregnancy complications.

Now, another annoyance here is her questioning my diagnosis of PCOS. Really? You have labwork from July, AFTER I was put on Metformin. I have copies of bloodwork BEFORE metformin, and why would doctors diagnose me with a condition in 2000, and be treating me for it all these years if I didn't have it.

This doctor acts like just because I can get pregnant, I don't have PCOS. Like most doctors, they think PCOS is only Reproductive, but its Metabolic, Reproductive and Endocrinological. It affects ALL systems, and is genetic.

So now, this month, I am spending $300.00 to take a test through 23 and Me, which will test for the following: https://www.23andme.com/health/all/ and when I get the results, I am going to SLAP them into her face, and she like the lack of response in this message, will say NOTHING.

So I have told Alex that I would like for him to come with me to my next appointment. He agreed he will come with me to my next appointment. But I possibly am going to be creating a Youtube Channel to discuss these sorts of things in addition to this blog. Because woman need to know that when doctors try to tell them their wrong, their RIGHT!

But that is pretty much it to my vent about crappy doctors.

I am now in my 2 week waiting period, feeling confident, but if this month fails, than I give up... I'll probably stop TTC for a while, and just let nature occur.

As the holiday season comes closer, I get excited to maybe think my Holiday gift will be finding out I am pregnant, but we will see where this goes.

*baby dust to all*


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