A Bit of A Rant: Fed Up with Doctors

Why do doctor's always have to be so condescending  That is what is wrong with today's society. They think their better than us because they have years of a degree completed where I have nothing but my AS in Medical Assisting and am seeking the pre-reqs for Nursing School. 

Another thing that bothers me is how doctors can't seem to agree on one standardized treatment with each other. This is regardless of the studies you slap in these doctors faces...

I had an appointment with my Hematologist on the 10th, and wanted to have her be open to the idea of me having Lovonox injections, if and when I fall pregnant. I wanted her to be open about this because of a few things.

The first being that my new high risk OBGYN wants me to have the Lovonox during pregnancy, and the second being that I would feel comfortable knowing I did everything to prevent my child from having said issues.

Whether or not doctor's choose to acknowledge my conditions as being real, they are real. VERY. REAL Just because I have not gone to medical school does not mean I can not look up an article or research on PubMed, or SNPedia.com, or these other websites doctor's use. Just because I don't have credentials after my name, does not make me DUMB.

My hematologist appointment was on the 10th, and Yes, yet again, I am thinking of changing hematologists. 

I think her concern has shifted from my Hematology concerns to my Oncology and keeping me cancer free concerns, which I can appreciate, but my Hematology and Clotting Concerns are REAL and they should not be bypassed, especially when you have issues in both Hem and Onc fields needing to be dealt with. Lately, I feel like since I am in remission, she could not give a crap about my Hematology issues, and that is not okay with me.

The reason for switching my Hematologist would be because she refused to acknowledge other clotting factors that 23andMe, a consumer testing company showed. 

My concern is that the clotting issues are very real in conjunct with my MTHFR Mutation and when you add the immune issues and the methylation issues into it, it composes a very complex compound situation. Which she also passed off as nothing to worry about. 

She said "Wow. Wow. This is a lot of information. Wow. you know the problem is that society is not ready to see all of this. You don't know what any of it means" 

I am sick and tired of being treated like I am dumb and don't know anything. I sit here researching for hours on end my conditions, and find loads of studies, waste printer ink, and then get told "Sorry, this is nothing to worry about" or "Sorry, this is not a valid test" Well, if its not a valid test, than re-run the test in your office...

As far as my Endocrinologist, I am going to give them a chance, I did just switch to them back in November. My OBGYN also is going to be given a chance... its just not that easy. I feel like I am rushed in and out, and not given the chance to "explain" my questions. 

I prepared 30 questions for my hematologist and couldn't even get to have her look at them because her negativity just turned me off. 

My RE, and Hematologist think that these things are nothing to worry about, and the need for Aspirin and Lovonox are not needed, but my OBGYN thinks that I need the Lovonox, and my PCP agrees. 

My Hematologist wants me to "wait to experience another loss after 12 weeks before getting treated on Lovonox" Really? I have had 5 miscarraiges, 1 chemical, and 1 stillborn at 23 weeks gestation (20 weeks measuring) So I'm frustrated.

I really like my Hematologist, but lately she has been giving me a vibe that she just doesn't care. Honestly, she seemed more concerned about my Anemia.

I prepared the 30 questions for her and the tests I wanted her to run, and she basically told me "Those are not needed. I question the validity of 23andMe, and these could not be legitimate results" Well, lets take a look at something.

These were the questions I prepared for her:

1. When I last saw you in October, my menstrual cycle was weird, and had not come in 70 cycle days, my primary care doctor had ran tests to see what was going on. One of those tests she ran was a Beta HCG to rule out pregnancy. The first test came back as a positive, but she wanted to repeat it in a week to see if the results doubled. The second test came back negative. That same day I started bleeding. When I asked my PCP about this, she said that my TSH was 5.0+ and that because my thyroid was so high and I was deficient in B12, and Vitamin D, that it had trouble implanting. It was secreting enough HCG to be considered positive in the first test. The second test was negative because the HCG had plummeted She called this a Chemical Pregnancy. What is that? Is that a miscarriage?

2. In November, I purchased a 23andMe test out of curiosity to see if the mutations matched up with Factor V leiden heterozygousy. They did, but they also showed Heterozygous MTHFR A1298C, so I seeked out specialists at MTHFR Support and they helped me analyze my 23andMe results. What came back concerned me greatly.

3. My High-Risk OBGYN through Elliot OBGYN is Dr. Thomas Antisdel and Dr. Thomas Barett. I briefly discussed my OBGYN and Hematology History with these doctors, and they recommended my partner to get a Semen Analysis done. He got this sperm analysis done, and we met with Fertility Specialist Danielle Vitello of Fertility Specialists of New England, and she looked at his results, and they looked normal. Dr. Antisdel and Dr. Barett both feel that I will need Lovonox during pregnancy. In doing research of my clotting factors, I feel it will be needed during pregnancy, and post partnum. Previously, we discussed post-partnum only. What are your thoughts, now that these new clotting issues are existing?

4. My partner came back Compound Heterozygous for MTHFR, meaning he has MTHFR A1298C and C677T for heterozygous mutations. I already know that I am MTHFR A1298C, what does this risk do for our “future children” do you know much about MTHFR?

5. Regarding MTHFR, Folate and Folic Acid should be avoided. I have been looking at a drug called Metanx, which has the following ingredients:

L-methylfolate Calcium (as Metafolin®)	3mg
Pyridoxal 5′-phosphate	35mg
Methylcobalamin	2mg

What is your medical opinion on this drug? Can you prescribe this?

Regarding medical history, in November 2012, I was officially diagnosed with Diabetes Type II, with my Synthroid being increased to 100mcg daily, and my Metformin being switched to the liquid form of Metformin called Riomet, which is 2500mg/25ML daily. I just thought you should update diagnoses in my medical profile.

6. My PCP has recommended that I take the 81mg of Aspirin daily due to the clotting disorders and also because some studies show that it can help assist with implantation. I have been taking 81mg daily, but unfortunately my OTC is about to run out, can you prescribe this, or is it in OTC only?

7. MTHFR is showing links to several health problems. MTHFR has shown issues with maintaining and keeping pregnancies, as well as high homocystesine levels. Can we run the lab work to see about these levels, since I don’t think that this was ever done.

8. The ability to e-mail a provider back and forth when I have questions is important to me. I know you recently registered through the patient portal, but when I send an e-mail to you, will you review this and return a response? It is important to me to gain patient repertoire when I have questions and things come up.

9. My daughter was seen through Dartmouth Hitchcock Clinic and had the same unfortunate treatment in care that I experienced. They brushed MTHFR and Factor V off as nothing to worry about with an atrial septal defect. She will be seeing a colleague of yours, Dr Sweeter, who specializes in metabolic, genetics, and hematology in pediatric areas on the 14^th, but I was wondering if you knew the chances of her having the MTHFR mutation, if her father’s history is not known? She has been found to have the Factor V Leiden Heterozygous, and the MTHFR has yet to be tested, as it is “not concerning” to the doctors who saw her. My daughter also has Aspergers Syndrome, a type of Autism, and MTHFR mutations are common in Autism Spectrum Disorders according to Dr. Amy Yasko. Should she be tested for these as well? We were being told it was nothing to worry about, even though her chance of stroke, clot, heart attack ect were higher with her atrial septal defect. Thoughts?

See Documents I brought along.

10. RE the documents:

Is it possible that Factor X is the reason that I have experienced heavy bleeding and early first trimester losses?

Reproductive Endocrinologist suggested a karyotype. What is the difference between a karyotype and a genetic test?

What is an HSG? My PCP and the Reproductive Endocrinologist recommended this. Can this cause any problems with clotting?  

These are all in my opinion, very legitimate medical questions... But she seemed to brush these concerns off... 

As far as the medical panel I wanted her to run...

Complete Blood Count, Reticulocyte Count, Serum Iron, Serum Ferritin, Serum

Transferrin (All to check on the anemia)

Vitamins: Vitamin B12 (to check if I am deficient in this) Vitamin D (to see where my level is with this) Vitamin K (if found deficient, can explain why I get the Charlie horses?) Folate – Metabolized and Unmetabolized Folic Acid Serum

MTHFR (Obviously we know that my 23andMe results showed I am A1298C, but would want to have an official test done through you, correct?)

Coagulation Assays (Since I am on Aspirin and it is a blood thinner, would you want to re-check some of the things you already checked that check if the blood is thinning too much? Also, would you want to do a full coagulation assay panel?

Factor X: Where I came back heterozygous for 2, and homozygous for one, can you run a panel associated with Factor X? Would this be the Clotting Factor X Assay? Also, can you run a test to see specifically what these mutations are called? Or would that be Factor X? Would you run the Factor X Assay, Low Factor X Activity, Thrombin Time, Prolonged Partial Thromboplastin Time and Prolonged Prothrombin Time?

Factor XII (12) – Would you run a Factor XII assay to see what the activity of my Factor 12 is? Since those mutations are both homozygous, can you tell me if the test for Factor XII would be the only thing needed?

Thromboplastin aka Factor III – What test can you run to show this mutation and what it does? There is little on this, other than it is a protein that helps in clotting and is CD142? Would a partial Thromboplastin time show what this factor is doing? Why it is also called tissue factor?

Factor IX (9) – Can you please run a Factor IX assay that would measure the activity of my Factor 9? What is the relation to Hemophilia B? If it comes back as abnormal, can we look at Hemophilia B?

Homocystesine Levels: I would like this one run because I wish to know what my MTHFR is doing to my homocystesine.

Cardiac CRP – Can you re-run this? My PCP ran this back in November, and it was extremely elevated. It was at 10.00 and normal was below 3. The concern is that it could either be high from inflammation or my risk of clotting is extremely high. Would this be high due to the Factor V Leiden?

Fibrinogen – Last time you checked this, it was slightly elevated. I am concerned with the possibility of Factor I, since Factor I was not included in 23andMe testing. So could we check this?

All legitimate medical blood tests in my opinion to be ran to check and see what was going on. Now, the thing that gets me here is this:

If the RE and the Hematologist both agree and think that Factor V Leiden and MTHFR are not the reason for the early miscarriages, but we know that I have mutations in Factor X, a study found on the National Hemophilia Foundation found this:

Women with factor X deficiency may experience heavy menstrual bleeding (menorrhagia), be susceptible to first trimester miscarriage or other complications during pregnancy and delivery

We already know I suffer with heavy periods, and have had many first trimester miscarriages. So why this should NOT be looked at as an option?

 Well, the Hematologist basically said "Wow, this is a lot. Wow. The problem with these tests is that society is not ready to accept what they mean, nor do they understand what they mean"

Am I incapable of a google search? Hello, these are dealing with MY GENES! Not anyone else's. MINE. So because I don't have some fancy smancy medical degree, I'm incapable of doing research and finding out what these mean?

Than she goes onto saying "I do not think you need to take Aspirin daily, I also do not think you need to take Lovonox injections during pregnancy until you experience another loss at greater than 12 weeks. If and when that happens, then we will talk about Lovonox"

So WAIT A SECOND. I should have to experience YET ANOTHER LOSS before your going to provide me TREATMENT?

That just makes no sense to me, and it is not okay...

So now I feel back to square one. Finding a doctor who is going to answer my questions and legitimately listen to me. Why should I have to keep firing doctors who are "medical professionals" when their supposed to do their job to begin with?

This will be the SECOND Hematologist I've "fired" and I am really at a loss, because I like her a lot. We already know that my OBGYN has been changed THREE times, and my Endocrinologist has been changed TWO times. I'm just really starting to get fed up, and wish my ARNP/PCP doctor could provide me care for all of these specialties. It is frustrating to me.

So I am going to sit here and think about it, and discuss my frustrations on the 17th with my Primary Care Doctor who seems to listen to my concerns about everything. Since my appointment on the 17th with her is to discuss "infertility" that is what I plan to do. Maybe she will run labs to check my hormones and all the labs I wanted my Hematologist to run...