Tag Archives: endocrinology

Endometriosis Awareness: Mirena – Help or a Hormonal Mess?

This is the second post I’ve written today. Earlier, I typed out a post about endometriosis awareness events, and how this month especially, they frequently occur in medical practices or companies with a partial stake in endometriosis. Perhaps that post will come tomorrow as I feel it could use some polishing.

This Is How It Starts…  

The inspiration for this post — ” Mirena® – Help or a Hormonal Mess? — is thanks to a portion of my recent hormonal blood work arriving in my in-box. All blood work ordered through my endocrinologist, neurologist and general practitioner’s offices become available to me via e-mail once the lab clears them. Due to some recent symptoms and long term endocrine issues I will not bore you all with, my endocrinologist felt it worth running a full hormonal panel. Honestly, when all was said and done, I don’t think there’s a hormone she didn’t check!

The problem is — and we discussed this… at length — the  Mirena® interferes with hormonal testing. Considerably, in fact.

For those familiar with my  Mirena® journey, this part will be old news and I’m sorry. Bear with me for a moment.

For those popping in thanks to a search term (Hello! Thanks for stopping by!), I had my first  Mirena® IUD inserted in April of 2007. I was terrified. After reading Internet horror stories, I had psyched myself into thinking I would pass out, bleed excessively, have a ruptured uterus… whatever could happen, it would pretty much happen. So I reached for two Tylenol #3 with codeine (a prescription pain medication), which effectively numbed any pain I may have experienced during the insertion. I went home, had a few cramps and slept the rest of the afternoon. After some faint spotting and mild cramping, my periods stopped. I only had spotting again after my laparoscopy in 2008. And that was only a few times (due to the doctor moving my uterus to remove adhesions).

It wasn’t all smooth sailing along the way. I had moments where I wondered if the Mirena was causing moodiness and cramping. It did increase my tendency to create ovarian cysts, which can become rather painful. The reason for my 2008 laparoscopy, for example, was due to a cyst that developed on an ovary. We watched it through ultrasound as it sat on my ovary for nearly a year. When it developed into a thick walled septated cyst — the kind that can develop into cancer — it was lap time. Naturally, my doctor was eager to get it out.

Shhh.. the “H” Word… and a New Mirena Comes to the Rescue

Because of my history and my pain level, I felt ready for a hysterectomy. I was already living without a period (this was all menopause was, right?!?! Ha!). What’s the big deal. Thankfully that gynecologist’s office had a nurse practitioner who had had endometriosis and had a hysterectomy at 30. There I sat, a naive but in pain. She convinced me that the better option was to stick it out with Mirena®, or try another reversible endometriosis treatment. And now I am glad I took her advice.

But that brings me to 2013. I am on my second  Mirena®.

The second insertion did not go so smoothly.

As I was saying, my endocrinologist decided to run some hormone panels (read: every single hormone panel know to man). We knew that because the  Mirena® causes your period to stop — or amenorrhea —  many of the lab values could be off. Hormones like follicle stimulating hormone, estrogen and testosterone — to name a few — fluctuate depending on where you are in your cycle. That’s right. They rise and fall in the beginning, middle and end, and differences can signal problems —if you know where you are in your cycle. How am I supposed to know that when a) I don’t have a period, and b) when I did have a period, my cycles were anovulatory. Because I didn’t always ovulate, my periods were irregular, always heavy and lasted — on average — 2-3 days.

So Does the  Mirena® Mess With Hormones? 

Unlike it’s non-hormone releasing cousin IUD, Mirena® releases synthetic progestogen — in the form of levonorgestrel — into the uterus. The manufacturer, Bayer Cross ®, stands firm that only a little bit of the levonorgestrel gets into the blood stream.

Yet,there is an extensive hormone related list on their website of possible side effects. Bayer Cross ® Bayer insists that the following are experienced by 5% under:

Vaginal discharge

• Breast pain or tenderness

• Nausea

• Nervousness

• Inflammation of cervix, vulva or vagina

• Pelvic pain during your period

• Back pain

• Weight increase

• Decreased sex drive

• High blood pressure

• Pain during intercourse

• Anemia

• Unusual hair growth or loss

• Skin irritations (such as hives, rash, eczema or itching)

• Feeling bloated

• Swelling of hands and/or feet

• Expulsion

I have daily search strings for “mirena and endometriosis,” “mirena headache,” “mirena and migraine,” mirena weight gain,” “mirena and acne,” “mirena depression,” and the list goes on. These must be from the IUD’s hormonal component. You do not see this with the non-hormonal IUD.

I do not have a period, though. And as for cysts… while they do hurt, I have learned to live with them. As a wise doctor once told me, “That’s terrible saying you’ve learned to live with the pain.” I told him I didn’t have a choice. I had a life to live and didn’t have time to wait for him to fix me.

So, will I be getting it out? No. As long as it’s keeping my monthly hell away, it’s staying put. Of course, unless my endocrinologist calls Monday morning and says those test numbers are telling her a different story. But then again… like I said… that little thing in my uterus is making it hard for us to know when to test!

Advertisements

Hypokalemia?

I have diabetes insipidus. This isn’t new news; frequent readers are more educated on this subject from my writing about it than I was at diagnosis. It’s VERY rare, so of course I got it. My DI resulted from complications during the birth of my second child. Because of the systemic shock I incurred, I will be on medication for hypothyroidism and diabetes insipidus for the rest of my life. Why?

The sections of my pituitary gland that send hormonal signals to my kidneys to retain fluid and to my thyroid to make the necessary regulating hormones are… well… fried. The technical term: Sheehan’s Syndrome

Because of this, I have to pop a synthetic Levothyroxine for my thyroid and DDAVP to shut my kidneys down.

Because of the DDAVP, I must be careful. Extended stays in heat (as if my heat intolerance wasn’t enough!), excessive vomiting or diarrhea, or any situation that could cause fluid loss is a major concern for me.

In October 2009, I was hospitalized for hypokalemia. Hypokalemia is when your body doesn’t have enough potassium. Potassium is needed for smooth muscle (ever hear “eat a banana for muscle cramps”?). Your heart is a smooth muscle and when your potassium drops too low, this can cause palpitations and irregular heart beats. If it gets too low – death.

My hypokalemia then was not discovered until my potassium had gotten so low that I lost consciousness. This resulted in a concussion, ambulance ride, and 2 night stay in hospital. I wasn’t the same for weeks. Because of heart risk, my potassium was brought up VERY slowly while in hospital. My fluids were restricted. My DDAVP was stopped. My diet was watched. It was a scary time. Until the moment I woke up in a hospital bed – head screaming with pain, unsure how I had gotten there – I didn’t realize how serious diabetes insipidus can be.

Needless to say, I am very careful on what I take (over the counter medicine), and what I eat. If readers recall my recent dietary change eliminating HFCS, you will also know I was instructed to take 2 doses of Miralax – a laxative that works by pulling moisture into the intestine.

I was on this medication when the October 2009 incident occurred. At that time, I was unaware that polyethylene glycol (Miralax) can cause hypokalemia in chronic use. Or, when not used per directions. The drug manufacturer suggests one capful per day for adult usage. My doctor is having me double the recommended dose per day. She justified this by stating that she has patients taking 3-5 capfuls a day. But I wonder, how many of these patients have underlying endocrinological disorders that can cause life threatening electrolyte disorders? After all, my condition is so rare an emergency physician had to page my endocrinologist because he was unaware that DI patients must have special precautions in place when having IV therapy.

This brings me to today. I am having the all too familiar heart arrhythmia, dizziness and light headedness. At times, I feel almost floaty. Laying in bed, as I am now, I feel myself sway. Standing up, I feel the blood pool to my feet. My heart, regardless of my position, is a flutter.

I am showing signs and, if not better by morning, will be getting blood work. We often underestimate our chronic conditions until they run at us, screaming, threatening a head-on collision. If my potassium is low, an urgent call will be placed to the gastro.

And he’s gone…

Endocrinologist’s… and the GI dance….

Continue reading

The day of the Doctors

Yesterday was a whirlwind day. It was crazy, but good.

To begin:

Endocrinology:

I arrive and park my car. I plug the ear phones into  my ears and put the jack thingy into my cell phone and hit random on my music player  and what comes up? The Imperial March from Star Wars, which I had no idea why it was in my phone, but sort of fit the occassion and gave me that extra boost I needed to barge into Dr.’s office and demand the attention I needed.

Turns out I have autoimmune thyroid disease and he doubled my dose of thryoid medicine. Hopefully this will help me to feel somewhat normal soon. I also mention the smoke odor I keep smelling on occasion that no one else is smelling. He, too, was concerned. He did say he’d heard it before. My other doctor said it could be tied to migraines and seizures. He was going to look it up. My tests all came back and pointed to further testing for Diabetes Insipidus so he is scheduling the water deprivation test. I am to call Thursday morning and find out when that will be – it will be soon.

Urology:

Yeah, so, this was pretty much a waste of time but needed to close my case with the pee docs. 🙂 It was nice, I might add, to cross a doctor off my list for a change instead of adding one to the list. But there really wasn’t anything the urologist could do for me. He couldn’t give me any bladder control meds because that would render the water dep test pointless. So, all in all, it was a quick visit.

So I have another autoimmune disease because scientist are already thinking endometriosis may be an autoimmune disease. Lovely. They also think all of this is tied to my migraines.

During my second trimester of pregnancy with my daughter I started passing out – sort of like I’ve been doing recently. I was refered – reluctantly – to Cardiology for a holter monitor because of my heart murmur. I was then diagnosed with dysautonomia and told to wear compression stocking, increase my salt intake and water intake. I was to take every measure possible to avoid extreme heat and dehydration. My delivery of my daughter was nothing short of traumatic. I had contractions, five minutes apart for a week before they would admit me. They finaly had to admit me because her heart rate was unstable. When they broke my water there was meconium in the fluid and was given 4 hours to deliver before a c-section. Literally 4 hours later she shot out of me like a canon ball. No one was prepared. The doctor was literally pulled from another delivery – he had to leave in the midst of sewing up a woman and they dressed him enroute. My daughter was practically out by the time he got there and he almost dropped her. She came out with one arm stretched out like under dog coming to save the day.

Holy freakin’ crap – When I looked up dysautonomia for that link above I was reading and I quote: “In other cases, the heart may race (tachycardia) for no apparent reason (known as Inappropriate sinus tachycardia),the patient may experience severe migraines regularly, or the kidneys may fail to properly retain water (diabetes insipidus).” WOW.

It’s like one huge Pandora’s box has been opened. Am I about to be cursed with another summer suffering with the compression stockings? Oy.

(I edited this post because I am finding myself jumbling things in the past days and not making sense. Doctors appointments are jumbling together. Forgive me and bear with me. I will get it all straight, eventually.)

Pity Party?

I sit here staring sleepy eyed at the computer screen.

My coffee has turned cold, my Kashi Pumpkin Spice Flax bar is but crumbs on my desk.

My EndoFemm has been reheated twice this morning and helping me to cope.

I’m desperatly trying to keep from reaching for that bottle of Cataflam in my medicine cabinet.

I really just want to climb into bed and hide from the world and wait out the pain. It’s hit a climax today. And the more I prepare myself for my April 8th Endocrinology appointment, the more I realize that A) I could end up starting next week off with a pituitary tumor, B) and I may have to try Danazol, Lupron Depot, or Amiredex for my endometriosis before he will approve a hysterectomy. And here I am, in endometriosis pain, left in limbo land hell.

And it’s days like this I wish I didn’t work and could lay on my couch drugged up in a stupor. I know, this isn’t healthy, but I’m fed up with pain. FED UP! Chronic conditions stink. OK. If you’d like to be invited to my pity party, the door’s open, bring meds and kleenex. 🙂