My Case (2011-May 2019)

Hi, 

My name is Marlies and after a few years of battling hormone imbalance I decided to start a site and forum to raise awareness of this medical condition that comes in a lot of variations and degrees of symptoms. I have been battling it for 6 years at the least that I'm aware of, but it could have been longer. I've started making a lot of progress thanks to MANY people like me on the Internet that took matters in their own hands and found "unconventional" ways to work with the imbalance along with help from some of my doctors. Also, many thanks also go to the doctors and experts that have published books relating to hormone imbalance as well as ones that are taking the time to help patients get balanced in their practices.

It took years before I finally started getting to the bottom of hormone imbalance. There were many reasons-the biggest being that my symptoms mimicked many other diseases and conditions causing a lot of barking up the wrong tree situations and still seems to be the case due to the various symptoms that pop up over time!


I started noticing that I seemed to be gaining weight steadily, not fast at all, but I seemed to carry it well so I didn't give it much thought since it wasn’t obvious appearance-wise until 2012. I just associated it with getting older-after all I was around 37 years old. I also had been eating out a lot as well since I am not much of a cook and it was easier! About mid-end 2011, I had many other minor symptoms including foggy thinking, trouble focusing on tasks, forgetfulness, mood swings, and very brief hot/cold flashes. I also had many night terror episodes to the point of nausea and rapid heartbeat. It was only when I started getting constant light vaginal bleeding in August 2011 is when I realized something was not right, but since it was relatively light, no pain whatsoever, slept ok and not interfering with my daily life, I really didn’t give it much thought for about 10 months. I know, crazy when I think back about it, but I felt fine otherwise and when you keep thinking it will stop in a few hours/days this was bound to happen. After about 10 months of light bleeding, I went to urgent care in May 2012 because I was getting tired of the daily spotty/light bleeding along with the other symptoms which was getting worse. Had intense cravings for fatty/salty foods as well, but not sweets. I was referred to a gynecologist who had tests done on blood count, and thyroid. Blood count and thyroid, (TSH), came back normal. Pelvic Ultrasound also came back normal.

 

At that time we decided on a wait and see approach since funky things happen sometimes when it comes to menstrual cycles. During 2012 I started getting gaps between 1-21 days of bleeding which was still considered irregular. About a year passed with no improvement. In April 2013, another round of bloodwork was done which came back the same as the last time-normal for thyroid. Estradiol and LH also came back normal. FSH came back low. Pap smear was normal as well. It was suggested that I go on birth control in an attempt to regulate my cycles, but I refused on the condition that my mom had a heart attack and I didn’t like the risks based on that. Progesterone cream was also suggested to boost my low progesterone levels, but since I have a very low tolerance for medication and am allergic to all antibiotics and aspirin I declined that as well. I found that certain foods have progesterone and wanted to try to increase the progesterone in a more controlled manner. An endo biopsy was also recommended due to the irregular bleeding, but I had a really bad feeling about doing that since I was really afraid that it would make matters worse and by then I was starting to think it was something simple and not gynecological, but what? I had started to notice by then that certain foods and drinks caused bleeding to start or increase and  I had just found out about cortisol and since I was under a lot of stress I started to think there was a connection. I also noticed that when I had adrenaline rushes I would bleed more or even start to bleed sometimes which really got my attention and made me focus on cortisol more since even roller blading, night terrors and strenuous things like lifting caused me to start/increase bleeding. The adrenaline rushes were getting more constant getting me in a vicious cycle which stopped after a heavy bleeding episode in Sept 2013. Strangely enough the heat did not bother me at all during that time-even on the hottest days!  


Before the heavy bleeding in Sept of 2013, I had a full physical in May 2013 by my GP to see of something might show up explaining all this since deep down I felt that it was not gynecological in nature, but mimicking it for some reason. She ordered a round of bloodwork for cholesterol, progesterone, testosterone, cortisol, (which I had just found out about and thought there might be a connection to), glucose, Sjogrens Antibodies and ANA. Everything came back normal except progesterone which was low, cortisol which was high and mild positive ANA. I was then referred to endocrinologist #1 who tested me for progesterone, testosterone, LH, cortisol (saliva and urine only), and glucose which were of most importance.

Progesterone was still low, testosterone was very high, creatine clearance was also high and the rest came back normal. Noticed that the urine cortisol was on the high end of normal too. He diagnosed me with PCOS and ruled out Cushings. The only things that linked me to the PCOS as far as I could see was the high testosterone, vaginal bleeding and mild hirituism which made me skeptical because somehow it didn’t feel like PCOS and I had no other symptoms of PCOS that most other people have. Also, when I used the FSH/LH ratio to determine PCOS, I found that I was within normal there since my LH is nowhere near twice my FSH. 

The fact that my cortisol was normal in my saliva and urine also intrigued me since my blood cortisol levels has been always elevated/high and I suspect that it was even higher in the beginning, but have no proof of that since no tests were done on it then. Metformin was recommended, but declined due to my intolerance for medications and the side effect potentials didn't appeal to me either.

In June 2013 I had another pelvic ultrasound which came back normal.

In mid-September 2013 I suddenly had very heavy bleeding with lots of clots. I have never had anything like that even when I had normal cycles, so I got very concerned about getting anemic. After about a week when the bleeding slowed down I got blood drawn and tested for TSH, Estradiol, Progesterone, FSH, Cortisol, CBC as well as Ferritin (Iron). All came back normal except that progesterone was still low and cortisol was still high and surprisingly normal Ferritin levels.

In November 2013 after much research I was starting to put the pieces together, but was having more questions than answers at this point. I went for a follow up to my GP and had tests done for everything at once to see better how everything corresponded to one another. TSH, Estradiol, Progesterone, Testosterone, FSH, LH, Cortisol, glucose and magnesium. All came back normal except progesterone which was low, cortisol which was high, and bun/creatine ratio which was also high.

In May 2014 I had another physical by my GP. TSH, cortisol, glucose, cholesterol, A1C and C-Reactive protein were tested. My cholesterol increased a few points, but still normal and my cortisol was high.  This began my journey on finding out everything about cortisol and it became my main focus and still is. During this time I started getting really weird symptoms like “crashing”, getting easily overwhelmed, and rashes on my arms and feet which lasted about 2-3 months sporadically. By then I was getting more desperate to find out what exactly was going on since I felt that I was missing something still. I was down to 118lbs by then and having bigger gaps between bleedings, so I knew I was on the right track at least diet-wise.

After more research I came across another endocrinologist that seemed to be more experienced in the areas I needed more help on or might need help on in the future like diet and osterporosis. Even though she was out of state, I was desperate by then and wanted a last chance of finally getting this under control. Little did I know that I was already on the right path, but it took her tests to validate and introduce me to even more possible causes. Had many symptoms of insulin resistance, but bloodwork ruled that out. Only things of note were low progesterone, elevated DHEA-S levels and low Vitamin D. Cortisol was not tested.

In Oct 2014 I got Cortisol and DHEA-S tested by my GP. Cortisol was still elevated and DHEA-S was also elevated, but decreased from a year earlier.


May 2015
Got most of the stuff retested again and everything came back normal except Progesterone which was reflecting ovulation, but still on the low side and Vitamin D which was also still low going down a few points. Also had elevated cortisol and high FSH at 31 which rules out PCOS due to the ratio. 

Pap and mammogram were both normal.


Update: July -Aug 2015

Went to my OB-GYN around end of June for a followup and she felt no need to retest the FSH since she had ruled out POI/POF due to me hitting the magic age of 40 and also since I still had periods in general. Perimenopause is my current status based on the symptoms, but more causes might be possible. Further investigation underway.

I've been experimenting with a few things and found some interesting things in the process: 
-For 2 weeks in July I have been going on a "fast food diet" since I wanted to see how my body adjusts to getting "ordinary food" and my weight and sizes stayed pretty consistent during the time which was a big surprise. I was also trying to boost my calorie intake to build muscle as well as raise my cholesterol a little to see of it improves anything. -I missed a period for June, but got it in July and August again-very light though. I've missed a period every year for the last few years now, so nothing new there.

Update 2016

Many changes have occurred since my last posting. Here's what's been going on.

Back in 2016 I had been hanging in there and not improving much at all. Something was still going on and no one including me could really pinpoint it. I started getting problems in my right shoulder to the point of extreme pain. I went to a shoulder doctor who put me in Therapy after MRI showed inflammation. I spent three months in therapy with my shoulder worsening to the point that my shoulder locked up by mid 2016. My only options at that point were surgery or cortisone shots.

I decided to get a second opinion mid 2016 and found a local holistic doctor who managed to fix my shoulder and most of my hormone imbalance! As of February 2017 my shoulder has 100% range of motion and getting stronger by the day. My periods are pretty regular avg 28-39 days as well. I have more energy, sleep much better (6-7 hrs a night), lost more weight being at 113 lbs, my mind has cleared up and not as forgetful either.

Here are the discoveries that were made (many thanks to my holistic doc who helped pieced most of this together):

-My locked shoulder was actually caused by a misaligned clavicle muscle!

-I was suffering from adenal fatigue (stage 2-3). Started taking sea salt daily to heal the adrenals as well as take care of the electrolyte deficiency I had as well.

-I had some autoimmune issues which revealed itself when I tried to take supplements. I got really bad reactions to them triggering mood swings, feeling off and severe fatigue.

-Had a little Vitamin B12 deficiency.

-Had some periodic clashing of the sympathetic and parasympathetic areas of the nervous system.

-Carb intake was still too high for me at 150g/day. Had to go on a diet to avg between 50-100g/day and all of a sudden every thing seemed to fall in place especially in conjunction with sea salt.

-Have been taking Cod Liver Oil since September 2016 which seems to help in other areas as well. Not taking enough to help with the Vitamin D and not able to take more than 1/3 a serving, I bought a Sperti Lamp which hopefully will help. Just started using it end of Jan 2016.

-Had to go for a rescan of my mammogram done last month since they found level 3 of 4 in terms of breast density and wanted to doublecheck. Everything ended up being fine-just a clump of tissue. I found that I had the mammogram done a week before my period which I think contributed to the problem. I was expecting my period around the 35th day of cycle and scheduled the mammogram based on that, but it came a week earlier on the 27th day.

-Still have elevated cortisol levels, but a few points lower than before, so I think the sea salt is helping here. To see of I can minimize the cortisol, I've also been cutting down on my exercise to 1/2 hr a day tops and do 5 min jog, "The Rack" curls, therapy band stretches, dumbbell curl holds and bodyblading. I walk only 1-2 times a week as well. I highly recommend the bodyblade. A great way to trim down and get more lean and muscular. You can visit their site for more info.

Update 2017-mid 2018
Tried a variety of diets after realizing that diet was having quite an impact on everything. In spite of being pretty stable in terms of moods, weight, and how I felt, something was still not quite right and started to think something I was eating was not helping me overall. Constipation was becoming a major issue and I could not figure out what was causing it. Confirmation from my Holistic Doc showed more food sensitivities that I was unaware of based on many of the foods I had been eating up to then. My periods started getting an interesting pattern too with alternating months of 24-29 day cycles with 32-39 day cycles the following month.

Mid 2018-Current
Armed with new knowledge about food sensitivities, I decided to cut out what I had been eating most of in my diet which was meat (turkey, pork and red meat). In terms of meat I now only have chicken and fish with occasionally the other meats 1-2 times a month instead of multiple times a week. After a few months I noticed much less bloating which caused me to slim down even more. I found that eating less overall helped me even more too. I also started taking Carlson Cod Liver Oil, but had to stop after about 2 months due to a bad breakout of cystic acne which cleared up 2 months later. Also had an increase in oily skin and hair while taking the Cod Liver Oil as well.

Since eating less meat overall and changing my diet to eating more what I like when I like it within reason I've found a tremendous improvement overall. Staying slim, weight staying stable at 114-118 lbs average as well as a 40 point cholesterol drop in about 6 months which was the biggest surprise.

I also cut down on the exercise in the Fall and Winter as well with surprising results of maintaining stable weight and still remaining toned.

My period cycles have become more regular in the sense too of every 21-28 days the last two months so far which was like I had before this all started.

April 2019-Current

Got a Functional Medicine doctor who is helping me fill in some areas that need improvement. Recent bloodwork found deficiencies in Vitamin D and Vitamin B-12 due to me eating less meat as well as inflammation somewhere in my body. The biggest impacts were low energy levels and feeling drained most of the time. Since taking the supplements my energy levels have returned to normal. Also working on an AntiInflammatory diet as well to see of that helps.

Also took a saliva test to measure my cortisol levels as well as Cortisol Awakening Response. The CAR came back normal, but the daytime Cortisol levels were elevated and were actually slightly above high levels in the test. I will be taking a supplement to modulate the adrenals called Rhodiola-Ginseng Complex. I suspect that this pattern has been going on for many years and will be interesting to see of the supplements gets the adrenals back to normal functioning/levels.