Blood Pressure

So how many of us have gone to the doctor’s office and thought that cannot be right when they take our blood pressure with a machine? I know I have. So I have 2 primary care doctors (pcp) one that is civilian and one through the VA. Every time I go to the VA they always read my b/p by a machine that puts my b/p through the roof. However, at my civilian pcp my b/p is always spot on and no issues. Problem with this is the VA labels me with high blood pressure and wants to start me on medication. I cannot see being put on medication that is not warranted so I fought that.

Recently at an RE appointment they too used a machine to do my b/p and it came back high. I tried to explain that normally my b/p is spot on, however, they stated that when my labs were faxed from the VA the doctor had me labeled with hypertension. This makes me angry as I don’t have this, and do understand the ramifications of having high b/p especially untreated when trying to get pregnant.

This led me to do some research into accuracy of machine b/p readings. In doing so I learn some things…..not so much on accuracy of machines but proper ways to take a blood pressure…..which often does not occur and never has through the VA for me. Needless to say I decided to share these findings.

It is important to first look at the site in which blood pressure is taken from. For most this is from the upper arm, however, in some clinics this has to come from the forearm due to the clinic not having a large enough cuff to fit the upper arm. While taking it from the forearm may seem like that best solution, research has shown that doing so will result in a higher b/p reading thus making this site not reliable (Ng & Lang, 2014).

Next lets look at cuff size. If the cuff is to large, this will cause the reading to be lower than it actual is (Ringrose, Millay, Badwick, Langkaas, & Padwal, 2015). Whereas too small produces a b/p reading that is higher (Smith, 2005).

As an obese patient I often find that clinics do not have the right size cuff to fit me (even at the VA) which results in them using cuffs that are too small. This was and is the case for the pcp at the VA and the RE I recently seen. When I said something about the size of the cuff, they stated it was fine as long as the cuff went around the arm. However, there are reasons for the cut off lines on the b/p cuffs.

Smith (2005) reported that a cuff needs to fit the persons arm within the lines shown on the cuff and for most obese individuals this means using a much larger cuff sometimes even a thigh cuff in order to get an accurate reading. Without an accurate reading we could be getting labeled and treated for things we do not have and when talking about the heart this can have huge health implications.

Another area Smith (2005) reported as being over looked is the fact that while your blood pressure is being taken, you should not be talking. Doing so falsely raises your b/p. How many of us have been to the doctor’s office and had them asking questions while the machine is reading for our blood pressure. So combine that with the wrong size cuff, how much is your blood pressure being over estimated? Sad but true many clinics do not follow the American heart association guidelines for taking a b/p (Smith, 2005).

As patients I think we need to demand that they start doing so in order to be given the best care needed for us. If you are looking to become pregnant, as am I, having accurate b/p readings is essential in care as being obese puts us at a higher risk for mischarge due to a number of reasons one being high b/p (preeclampsia) (retrieved from http://www.acog.org/Patients/FAQs/Obesity-and-Pregnancy ).

I have said something in the past about the size of cuff to the nurse at the doctor’s office and was told it wasn’t an issue, however, after doing this research I do believe that the next time I go to the VA or any new doctor’s office I will be taking a copy of the American heart association guidelines for taking blood pressure so that I can show them that what they say is fine, is actually not so.

Furthermore, due to the fact that I know the VA clinics use the welch b/p machine in my local area, the guidelines for those machines are listed on line and for my arm it states that I should be using a thigh cuff as their large cuff cut off limit does not go high enough despite being able to just barely wrap it around my arm (and while pumping up starts to come apart causing the nurse to hold it on). It is sad when we have to fight for the most basic care standards, but am finding this seems to be the way when you are obese.

If your doctor has told you to start taking your blood pressure at home make sure you also follow the guidelines. If you are having a hard time finding a b/p cuff that fits your arm try amplestuff.com they have a few options for obese individuals for b/p cuffs. If you find one of the right size for you may even want to take it with you to your doctors office if they refuse to fit you with the right size cuff, and tell them to use your meter as the cuff is the right size. Doing so will insure that you are getting accurate b/p readings.

One last thing to note about taking your b/p is that the cuff should not go over top of clothing. Putting the cuff over top of clothing, including thin shirts can cause a higher reading (Smith, 2005). So when you go to the Doctor's office be sure to wear clothing that does not cover your arm or is easily movable without cutting into your arm.

References

Ng, I. H. L, & Lang, D. (2014). Clinical comparison of non-invasive blood pressure measurement at different sites:  A systematic review protocol. Home, 12(4). Retrieved from http://www.joannabriggslibrary.org/jbilibrary/index.php/jbisrir/article/view/936/1919



Ringrose, J., Millay, J., Badwick, S. A., Neil, M., Langkaas, L. A., & Padwal, R. (2015). Effect of overcuffing on the accuracy of oscillometric blood pressure measurements. Journal of the American Society of Hypertension, 9(7), 563-568. doi:10.1016/j.jash.2015.04.007.



Smith, L. (2005). New aha recommendations for blood pressure measurement. American Family Physician, 72(7), 1391-1398.

You're so lucky?

Sometimes I have days where I just want to scream. Today is a day like that. I am tried of hearing others tell me how lucky I am that I don’t have children or how lucky I am that I do not have to worry about birth control. Did they ever once think that maybe I want a child? That desire is so strong sometimes that I could just cry.

While I am not done with my college education (will complete my Masters this May) this picture speaks volumes to me. 

Recently I went to a baby shower for my niece….I’m going to be a great Aunt. While I am happy for them the only thing I could think was why me? Why does my body have to not work like it should? Why can’t I have a child and do the most basic of things that a woman can do?

Or then you have those who say well you can always adopt. While don’t get me wrong adoption is great and a wonderful, I know that with my husband who is almost 51, most mothers won’t even go that route of choosing an individual of this are even though I am only 37.

So what am I left with to make me feel like a woman? Breast? Breast that have chest hair…..umm is that very womanly? Pretty eyes…….whose beauty is hidden by the male like facial hair that has to be shaved everyday almost twice a day…..umm still not sounding womanly. A period that can be really heavy and/or long lasting….that sounds like a woman’s issue, however, in between cycles never a chance to get pregnant…….hmm makes me feel like a freak or less than. Today is just one of those days. What is the root cause of all these issues?.....Effects of having PCOS. Little is known about just what causes PCOS, however, they do know it plays havoc on our hormones……since they know that, than why don’t they try to balance our hormones. I have yet to find research where they do just this, all I do seem to find research on is how to treat the symptoms.  Symptoms are not root cause. Why don’t they research for a root cause?

Sorry for my rant today, however, I did say this blog would include things on my life and today is just a hard day. However, I did find a silver lining today. While reviewing over the stats for this blog I learned that a number of you from all around the world read my blog. I cannot help but think this is due to the relatability and research I put into things. So for this I say thank you to my readers that I have thus far. If there is every anything you think I should write as a topic, let me know. If it is something that I have done research on (as I have a folder with some research I use when I go to the Dr’s office for pcos, and search for new stuff all the time) I will write on it.

Currently I am working on the following research:

        Hypothyroidism

        PCOS treatment

        Weight loss surgery and insurance issues

        IVF

        Infertility

        Low Vitamin D

        Low Vitamin B12

        Some of these topics may talk long than others for me to complete my research, and some of them may require sub categories. Despite this doing research helps me to stay informed, less stressed, and better able to fight for better health care. All too often doctors treat us like we are a number and not an individual. They see one diagnosis and ignore others and assume that what works for one individual will work for all those who suffer from the same diagnosis. If this was the case, than every individual with PCOS would have the same issues across the board. However, this is not always the case and is why we see some who are obese like myself and Whitney from “My big fat fabulous life,” while others like Kate from “Kate plus eight” who are skinny as a rail.

        So I live you with this, I will continue to do research and post my findings as I go, and I also may have days like today where I just need to vent. I hope you all have a blessed day regardless.

Victoza/Saxenda

How many of us have been on metformin for years but still do not see any change in weight just from taking metformin? Research points to a new medication that may help in weight loss, and is found to be even more effective when taken with metformin. This medication is called Liraglutide (brand name Victoza/Saxenda).

Liraglutide is marketed in two forms Victoza and Saxdenda. The difference between the two is Victoza has a max dosage of 1.8mg and is used for diabetes, whereas, Saxdenda has a max dosage of 3mg and is used for weight loss. Both of these come in pre-filled injectable pens.

So what does the research say? As I told you in the previous post I am one to research products, treatments, and pretty much anything I may use to help myself. With that being said I have done that on the use of Liraglutide.

First we will review liraglutide given as victoza (max dose of 1.8mg). In the quick summary what is shown is that liraglutide provides significant weight loss in both diabetics and non-diabetics alike (Visboll, Christensen, Junker, Knop, & Gluud, (2012); Sever, Kocjan, Pfeifer, Kranvos, & Janez, 2014). Furthermore, when liraglutide is combined with metformin a greater amount of weight loss is seen than with a stand-alone treatment of either metformin or liraglutide (Visboll et. al, 2014; Sever et. al, 2014).

           

        Now let’s look at what the research says about the use of liraglutide given as saxenda (max dose of 3mg). Jay, Lewis, Hung, Squires, & Ngal (2015) reviewed studies of saxenda use for the purpose of weight loss. What was seen with in the research was that just as with victoza significant weight loss was achieved only at a higher amount than victoza. This weight loss was found to be sustainable (Jay et. al, 2015).

        What about side effects? So side effects for both victoza and Saxenda is the same, after all they are both liraglutide just marketed for different purposes and dosages. The most common side effects reported where the following:  headache, nausea, diarrhea, vomiting, and anti-liraglutide antibodies in your blood (Jay et. al, 2015; Saxenda, 2016; Sever et. al, 2014; Victoza, 2016; Vilsboll et. al, 2012). Those who should not use this medication would include those with the following issues: 

        -self or family history of medullary thyroid cancer

        -you have multiple endocrine neoplasia syndrome

        -allergy to liraglutide

        -are pregnant or planning to become pregnant (Saxenda, 2016; Victoza, 2016)

There was evidence in rats that victoza/saxenda caused thyroid tumors and cancer; however, it is unknown if it would cause it in humans (Saxenda, 2016; Victoza, 2016).



        So why aren’t more people willing to take this medication as weight loss drug? Well to be frank the cost is high. Most with insurance are able to get victoza as it is a diabetic med and is covered my most insurance policies. However, many insurance companies or rather polices do not cover saxenda because it is a weight loss medication and most plans do not cover weight loss medications.

Cost breakdown as reported by goodrx.com

Victoza   30 day supply         lowest price (in MI)         $827.00

Saxenda 30day supply         lowest price (in MI)         $1260.00



        Of course both companies have discount coupons that you can apply for. Victoza (2016) coupon is if your insurance covers part of the cost your cost will be 25 per month for up to 2 years. For those who do not have coverage there is another application that you can fill out and possibly get the medication for free through the manufacture (Victoza, 2016).

        Saxenda also has manufacture coupon. If you have insurance that will pay for part of your cost, prescription will cost you 30 per month (Saxenda, 2016). If you do not have coverage, the coupon will take 200.00 per month off your prescription for up to 12 months (Saxenda, 2016).

        Of course with both products you have to apply for the savings coupons/cards. There may be requirements and/or restrictions (Saxenda, 2016; Victoza, 2016).

Personal Usage

        I personally am on metformin 2000mg and victoza 1.8mg. My insurance covers both medications. However my insurance does not cover Saxenda. I currently am waiting for the va to send me my victoza again and thus have run out so I have only been on the med for one month. Within that time frame I lost 15lbs. I am hoping to continue with the weight loss, however, I had to ask my dr to switch my rx to a 90 day supply in order to be able to see the full effect this medication could have. I say this because I will have to start all over with titrating back to full dosage, and thus this far I have not had a full month at full dosage yet. My hope is I keep on the downward trend, time will tell. Side effect wise I had to increase dosage slow every 10 days I went up 0.6 mg. Manufacture says every 7 days. I tried that however, I ended up with an upset stomach so went with ten days. Doing so helped with side effects.



        I may in the future see if my Dr. would be willing to give me an rx for saxenda at the dose of 1.2mg (to equal the 3mg) and take with the victoza. I would have to pay out of pocket for the saxenda however the cost should be far less as one normal 30 day supply would last 90 days if done this way. However, I have no way of knowing if my Dr. will do so. For now we will see how I do with what my insurance does cover.


       So for those of you who may take issue with needles, this may not be for you. However, personally I do not feel them. I have to do 2 injections of b-12 which really are not bad, but I can feel those. These injections for victoza/saxenda are no where near the same size of needle. Not only are they super short, they are also a smaller gage. These two factors make it so I personally do not feel the injections.


        Let me make this perfectly clear, I am not saying this is right for you, however, I am just presenting you with the research I found, and my experience I have with the medication. With anything like this of course talk it over with your doctor, may be even look up the research to print and take with you. Find out if this is right for you if it sounds like something you want to try.

References

Jay, M., Lewis, K., Hung, W., Squires, A., & Ngal, G. (2015). Liraglutide produces clinically significant weight loss in nondiabetic patients, but at what cost?. Journal of Clinical Outcomes Management, 22(9), 394-396.



Saxenda. (2016). Retrieved from www.saxenda.com



Sever, M. J., Kocjan, T., Pfeifer, M., Kravos, N. A., & Janez, A. (2014). Short-term combined treatment with liraglutide and metformin leads to significant weight loss in obese women with polycystic ovary syndrome and previous poor response to metformin. European Society of Endocrinology, 170(3), 451-459. doi:10.1530/EJE-13-0797.



Victoza. (2016). Retrieved from www.victoza.com



Vilsboll, T., Christensen, M., Junker, A. E., Knop, F. K., & Gluud, L. L. (2012). Effects of glucagon-like peptide-1 receptor agonists on weight loss:  systematic review and meta-analyses of randomized controlled trials. British Medical Journal, 344. doi:http//dx.doi.org/10.1136/bmj.d7771.

Research

So today is going to be a short entry as I am just not feeling that great.

Do you know how to find information on the internet? It is amazing how many people in many of the support groups on Facebook take for granted what a website might tell them without seeing what research there is to back the claims made on these sites. This is one reason why many Doctors cringe when they hear “I read on a site that this product would work for my diagnosis.”

I have never been one to take at face value what someone has posted, even if they have their own site. I do my own research, even using google scholar to look through peer reviewed article. Many don’t understand or know this concept of peer reviewed so let me break it down to you. Peer reviewed is work that has been reviewed by others within the same field. This is the type of work that if you print it off and take with you to your doctor’s office you are more likely to get them to listen and try things that they may not be familiar with. Of course I usually make sure I have five or more articles that support what I am trying to suggest to my doctor. You will notice in my last post I did add in references, and research. I do this for a number of reasons. Anyone can say anything, but when they have the research to back them, it makes their claims more valid both to others and professionals.

I leave you with this, next time someone suggests something to take be sure to do research into said product by looking for peer reviewed articles. Also remember that sometimes if a company does their own research they may be looking or fudging results in favor of their product (many weight loss products do this in order to claim it has been found in research to work) so try to find an outside study not connected with the product.

Infertility Treatment Discrimination

How many of us have heard it over and over again…..lose some weight and then we will talk about treatment. So many Re around the world limit who they will help based on BMI. I say what a load of crap. I have been to and heard countless stories where someone has gone to see an RE and they said come back after you lose x amount of weight. In my opinion this is lazy and discriminatory way to treat patients. We are individuals and thus each of us should be looked at as such and not as just another woman with PCOS who’s BMI is over 35 (for most places in the UK), 40 (for many places in the U.S.). When I hear this, my thought is these doctors in the U.S. are more concerned about their success rates than they are understanding the individual sitting in front of them. Due to this, when I screen for an RE I asked right off the bat, “Do you have a cut off limit for BMI regarding treatment, if so what is it?” Or I ask “Do you limit who you treat based on BMI, if so what is your limit?” I am tired of wasting my time and money on doctors who do. This type of discrimination is deplorable.

I know there are some of you out there who do not agree with me and have even tore into people in support groups for commenting about how their RE refused to treat them because of their BMI. Recently, in one of the many support groups I belong to on Facebook I read a rather nasty thread where a number of people were judging those who wanted treatment from an RE but were refused based on their BMI. Their reason for doing so was to inform them of the risk of getting pregnant while obese…..

Hello I think most of us know obese pregnant individuals are high risk…..does this than give you the right to say hey because you are high risk you do not get to have a baby until you are no longer high risk………

Of course not, because if we did this with all high risk individuals than a number of people would be refused services and this would be considered discrimination. The Mayo clinic (retrieved from http://www.mayoclinic.org/healthy-lifestyle/pregnancy-week-by-week/in-depth/high-risk-pregnancy/art-20047012 ) lists high risk pregnancy factors can include age, lifestyle choices, diabetes, high blood pressure, epilepsy, and anemia just to name a few. So with the logic of some of these ladies than we would need to refuse fertility treatment to those who carry any of these risk factors too, after all they pose a risk to both mother and child. Of course to do so would be ridiculous and possibly grounds for a law suit. So than why is it right to discriminate due to BMI?

Some in this same thread even gave personal examples of loved ones who lost their baby due to weight, but wait it wasn’t just weight, factors also included age, high blood pressure, and diabetes. And didn’t I just read the Mayo Clinic said all those items make a pregnancy high risk, oh yeah that’s right I did. So had she not been over weight would this individual still been a high risk pregnancy, yes indeed she would have.

Ok so I’ve beat that section to a dead horse now, I’m sure you get it, just being overweight/obese is not the only option out there that can make you a high risk. Let’s now look at other areas such as fertility treatment outcomes.

In this same thread many of these young ladies stated that you have less of a chance of having your treatment be successful when you are obese. And to their credit they are partially correct. I say partially because there is more that goes into factors of outcomes, however, they are often over looked as many studies do not tease apart other risk factors that a woman may have in conjunction with obesity.

 In fact there is research to suggest that type 2 diabetes in some of the obese can skew the results (Davenport, 2012). Furthermore, research even has shown that poor success rates of treatment to be unsubstantiated as there is not enough evidence to link BMI to reduction of births (Pandey, Maheshwari, & Bhattacharya, 2010; Davenport, 2012).

Now Dr. Simckes (2015) reports that there is some past studies that point to a 7% decrease in success rates in the very obese while other studies showed no difference. Dr. Simckes(2015) further explains that even looking at that 7% decrease there are studies that show Asians have this same percentage in decrease based solely on race. Dr. Simckes (2015) questions “Can you imagine the uproar if you denied Asian women access to fertility treatments based on race?” So if we refuse to discriminate against other risk factors and race, than why are so many still doing it with size?

Even the American Society for Reproductive Medicine (ASRM)(2015) states that fertility treatment should not be denied to obese woman (Simckes, 2015; CORM, 2015). The ASRM (2015) suggests postponing treatment in order to obtain weight loss should be viewed against the risk of declining fertility of an individual’s age. Dr. Simckes (2015) suggests that a patient should meet with a high risk obstetrician in order to fully understand the risks in the pregnancy and to start them on weight loss plan that could include medication to lose some weight (even if it is a temporary weight loss.) while working on treatment planning.

So point being if we, obese PCOS women, are looking for an RE we need to ask some questions prior to our visit and know that you have found a RE that truly cares if they offer you options, listen to what you have to say, looks at you as an individual and not a number, and develops a plan together. The blanket statement of lose x amount and come back is not giving you options, is not looking at you the individual, but at obesity in general.

It is discrimination to restrict access from treatment based on size. PCOS takes so much from women already, having an RE take away the option of having a family just further hurts those of us who are suffering from this disorder. If losing weight was as simple as flipping a switch, well dog gone it I think we all would have did that a long time ago, I know I would have.

RE Suggestion that does not limit treatment based on size:

(Disclaimer:  While I am listing an RE I am not a patient of his, nor do I work for him, heck I don’t even live in his state, I have however talked with his office and through email)



Dr. Simckes is the medical director of the Fertility Partnership in Saint Peters Missouri and has been in Reproductive medicine for over 20 years. He wishes that all individuals could experience the love of a child. You can contact his clinic at 636-441-7770. Physical address is:

 5401 Veterans Memorial Parkway ste 201

St Peters, MO 63376

http://fertilitypartnership.com/



You-tube video about the practice and Dr. Simckes. https://www.youtube.com/watch?v=4gwot59HyNU

References

American Society of Reproductive Medicine. (2015). Obesity and reproduction:  A committee opinion. Practice Committee of the American Society of Reproductive Medicine, 104(5), 1116-1126.

CORM. (2015). How obesity impacts fertility treatment. Retrieved from https://infertilitytexas.com/infertility-texas/how-obesity-impacts-fertility-treatment/

Davenport, D. (2012). Should obese women be banned from in vitro fertilization?. Retrieved from https://creatingafamily.org/infertility-category/obese-women-banned-vitro-fertilization/

Pandey, S., Maheshwari, A., & Bhattachary, S. (2010). Should access to fertility treatment be determined by female body mass index?. Human Reproduction, 25(4), 815-820. doi:10.1093/humrep/deq013.

Simckes, E. (2015). Obesity and fertility. Retrieved from http://fertilitypartnership.com/obesity-fertility/

Simckes, E. (2015). Pcos: Polycystic ovarian syndrome or what is wrong with my body?. Retrieved from http://fertilitypartnership.com/pcos-polycystic-ovarian-syndrome-wrong-body/

Reason for this Blog

So I had this thought, life is hard, damn hard, and what I currently am doing is not working. What if others are like this too and don't know where to turn or what to do? Maybe by starting this blog I can touch the lives of others and find relief in my own life....After all research shows that writing things out can help in expressing how we feel, remove some of the stress we feel, and even help us to realize things that we may have been over looking about ourselves.



At this point you might be saying and, so what is this all about. In a nutshell, my life. No I am not some superstar, model, or grand theorist. I am however a wife, daughter, student, caregiver, and a woman. Hmm and why would I put woman last, because some days I just don't feel like much of a woman. You see I have PCOS (Polycystic Ovarian Syndrome). And so right, well let me break it down to you. This has caused me to grow hair in areas that a woman should not, and I'm not talking about peach fuse or a stray strand here or there. I'm talking about full on manly hair complete with beard and mustache. If this wasn't enough, I have fertility issues and have yet to be able to have a child. So I'm 37 no child, facial and body hair like a man, married to my loving husband for over 10 years, and am struggling with life at the moment.



Needless to say over the course of doing this blog I will post about things I struggle with, research, and encounter in life.