First, thank you all for sharing your stories. While I am not thrilled to me joining the group, it is nice not feeling alone in this journey anymore. My thoughts and prayers to all of you who have traveled this path and continue to do so.
My case is rather complex. It seems I have a myriad of problems going on and I am still navigating toward a diagnosis. I am a 41 year old who is 5’5 and last I checked, idling at 184 lbs despite a daily calorie intake of around 1200.
In brief, I have battled weight issues since puberty despite being a relatively healthy eater and involved in sports until I was 16. Other than weight issues I have had a relatively healthy life until I decided to start having kids in 2004 (age 28).
First pregnancy: diagnosed with “borderline” gestational diabetes. Monitored with finger sticks before meals and controlled by diet. Despite healthy eating, I gained over 60lbs with my first pregnancy and gave birth to a nearly 10 lb baby via c-section. My cycles became horrible thereafter.
Second pregnancy: experienced secondary infertility issues (it took us 13 months to conceive). I was diagnosed with low Progesterone and put on a supplement into the beginning of my second trimester. Delivered a healthy baby, nearly 9lbs, via c-section. I gained 35-40lbs with that pregnancy.
About a year or a little less after my second pregnancy (around 2010) I was diagnosed with hypertension after my readings stayed in the 140-150s/80s-mid 90s. I was placed on a hypertension medication but I discontinued it after about 6 months because of the development of a chronic cough (and thinking I could change my lifestyle a bit and the BP issue would follow suit). I was also experiencing pretty bad fluid retention in my feet and ankles but nothing was done about that.
During 2011 to the end of 2014 I lost my health insurance and therefore did not seek any medical care. In 2015 I regained it and changed PCPs to an internist since I was approaching 40 and knew the next phase of life could bring on major health changes. Boy did I plan that right.
Feb 2015 I had a routine workup done with my new doctor. The labs showed elevated triglycerides, a BP of 182/128 (yikes), continued fluid retention (so bad at times I can’t fit into anything other than slide on shoes) and a very low Vitamin D level. My new doctor placed my on a BP med with a diuretic, ordered me to go on the Atkins diet, watch my sodium intake and to take 5000mg of Vitamin D a day. Then follow up in 6 months.
At the 6 month follow up, my triglycerides barely decreased, instead of losing weight on Atkins, I gained 6 lbs and despite the diuretic, I was still having fluid retention (though not consistent). (They did not believe that I had changed my eating habits by the way). I was told I needed to really focus on eating better and I was scheduled for a 3 month follow up and if I didn’t lose weight then we would have to have a more serious talk (I was 172lbs at my first appointment). I missed the 3 month follow up because I am also a caregiver to a chronically ill parent.
Fast forward to March 2016 (late March), I developed an upper respiratory infection. I typically get them every April but this one was very different. The fatigue was debilitating. It hit me like a ton of bricks at the checkout counter of a drug store and it took every single remaining ounce of energy for me to walk to my car, a mere 100′ away. I was diagnosed as having a bad viral bug but………..they also found a new heart murmur and I had informed them about a couple episodes of shortness of breath and waking up with a racing heartbeat (110 beats per minute). They put me on a steroid and had me follow up in a week or so.
April 2016 I followed up and while there, pointed out a palpable mass just above my navel and slightly to the right. I told them about a weird abdominal “catching” type pain I had been experiencing since last Fall and maybe it was adhesions from c-sections or a hernia. And so began the unfolding of many many tests and findings ever since……….
During the journey to figure out the hernia (which was finally picked up by a 2nd surgeon at a teaching hospital) I began experiencing relentless right upper quadrant pain which led to a lot more tests, several specialists (a GI doc, 2 surgeons, 1 OB Nurse Practitioner, 1 OBGYN and my PCP).
Gallbladder normal on ultrasound, normal on CT with contrast and normal on MRI but HIDA Scan shows an ejection fraction rate of 18% (Cholecystectomy recommended). The 24/7 pain has subsided but I do have pain daily though oddly enough, it is triggered by not eating as well as eating (and more often by healthy food than fatty ones).
CT with contrast showed bilateral adrenal adenomas. An in phase/outphase MRI was ordered. MRI result: 2.6cm adenoma on right adrenal, 1.7cm adenoma on left adrenal 3 lesions (cystic type) on my liver. (I asked my PCP if I should be concerned about these, He said no “They’re incidentalomas”. I don’t think they have anything to do with what is going on with you.” I told him I had read the Endocrinology Society recommended a workup to see if they are functioning or nonfunctioning and that I was concerned about my weight gain (difficulty losing it over the years), increasingly bad blood pressure and fluid retention issues. He said he would to the 1mg dexamethasone suppression test but to wait to have it done after I had other workups done). I could tell he was only ordering the test to appease me. More on that in a minute.
GI specialist did an endoscopy and colonoscopy: Endo fine, colonoscopy discovered 3 polyps (2 benign, 1 precancerous adenomatous) and a diagnosis of mild diverticulosis
OB visit led to 3 vaginal ultrasounds and the discovery and tracking of a suspicious, large ovarian cyst (turned out to be hemorrhagic) and a thickened endometrium. Endometrial biopsy done – negative for hyperplasia and cancer.
After all of my other testing sessions slowed down, I went in to have the 1mg dexamethasone suppression test done (July). My AM cortisol came back with a result of 5.9 (my PCP is calling this borderline). He ordered the 2 day test per endo protocol…..the AM cortisol came back 7.1 and my ACTH came back undetectable. I sent him a journal from the Endo Society with a bunch of hi-lighting and that I wondered if we needed to check for Aldosterone issues because of the fluid retention. He ordered an Aldosterone/Renin Ratio and 1 other lab test. Thursday will be 2 weeks and I have still not received the results. I do have an appointment to meet with him next week for him to “discuss” all of these findings. I am suspecting at this point, that I have sub-clinical cushings or something of that nature.
I have been delaying my cholecystectomy and hernia repair surgery pending these tests. Now I am concerned that I will be adding at least, a unilateral adrenalectomy to the list, if not bilateral which frankly, scares me quite a bit. I will be requesting a referral to Johns Hopkins or Duke to see an Endocrinologist. I asked my PCP early on when the adrenal adenomas were found if I should be referred to one and he said he didn’t think it was necessary. I am losing quick confidence in my PCP though he is well respected by other patients that I know.
Anyway, thus is my story…….and I know more is to come.
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