Tips for the ER #1

April is Cushing's Awareness Month.
We Cushies have to go to the emergency room when we face adrenal insufficiency and adrenal crisis. I'll post some additional links (here), (here), and (here).

Tip #1: Stay focused on what you need
Dehydration, infections, and the inability to keep down oral cortisol replacement cause Cushies to take the dreaded drive to an emergency room. So before you get there, psyche yourself up on the ride over. You better mean business, or you won't get the help you need if you don't push for it.

When checking into the ER, I present my instructions from Adrenal Insufficiency United that states I should not be triaged. When the nurse tells me to sit down and she will be right with me, I refuse to go sit down. I ask that those instructions be reviewed by the charge nurse or ER medical director, and that I will there at the desk until nurse returns. This usually gets me taken back as the next person.

Growth hormone for $0 a month!!

I found out recently that Humatrope does not charge a copay for people who don't have the money for it!! I now pay $0 per month!! I used to pay $60 per month and I have paid as little as $50 for three month supply.

How did I find this out? Well, I complained to the specialty pharmacy that filled the growth hormone that because they require me to fill it every month and refuse to fill a 90 day rx, it costs me more... instead of paying $60 a month for two months $120 and get third month free, this would force me to pay $180 for three months. This was unfair, and she said there was a plan. Not income based. Asked if I take it every day... yes. Do I have trouble meeting the financial obligations for taking the GH? Yes... i have 20 other medications I take daily. She said, ok your copay from now on is zero. WHAT?! I asked how that can happen, why would humatrope company offer to do that? She said that the insurance company still pays them monthly so the Patients amount is very small in comparison to the big chunk they get from insurance. So in order to get money from insurance, they let the patient have it for free....

https://copay.humatrope.com/success.cfm?43C4B6AC54F0EFEF8C7F5407DA8F3F4F13AC379A45AFD81D

The questions are:

Are you over 18?
MUST BE YES

Do you live in the USA or Puerro Rico?
MUST BE YES

Do any of your reimbursements for growth hormone medicine come from government entities like Medicare, Medicaid, Tricare, etc? THIS MUST BE NO

I'm so happy I stumbled across this, and I want to share it with all the Cushies out there who suffer from growth hormone deficiency after pituitary tumor(s) and pituitary surgeries.

Cushing's Awareness Month: What You Have vs. What Doctors will Say You Have

What Doctors Will Claim You Have Instead of Cushing's, because Cushing's is too rare

• Obesity (lose weight, lose symptoms)

• Polycystic ovarian syndrome (PCOS)

• Fibromyalgia (no lab tests can prove this; diagnosis given when they don't know what else is wrong with you)

• Back and muscle pain

• Diabetes

• Blurred vision, visual field loss, double vision

• Chronic fatigue syndrome

• Dry, oily, or sweaty skin

• Impotence or infertility

• Joint pain, joint/bone abnormalities

• Migraines

• Muscle weakness, carpal tunnel syndrome

• Temporomandibular joint/TMJ/jaw joint pain

• Thyroid imbalance or "slow metabolism"

What your symptoms really mean if doctors put them all together - CUSHING'S

• Facial redness

• Rounding of the face (moon face)

• Unexplained weight gain around belly

• Buffalo hump, or hump on back of neck

• Pink or purple stretch marks

• Thicker or more visible body and facial hair

• Acne

• Muscle weakness (difficulty standing or climbing stair)

• Extreme fatigue (no amount of sleep is enough)
• Depression, anxiety and irritability
• Pink, red or purple stretch marks along your abdomen, arms, or thighs
• Thin and fragile skin that bruises easily
• Slow healing of cuts, insect bites and infections
• Bone thinning (osteopenia, osteoporosis), easily broken bones
• Recurrent infections
• Sleep disturbances, night sweats, awake at midnight or 4 am
• High blood pressure
• Diabetes mellitus
• Irregular or absent menstrual periods in females
• Clotting disorder

And whatever you do, be careful not to be labeled as a DIFFICULT PATIENT, because your likelihood of being misdiagnosed goes up to 42%!

Read: Doctors 'more likely to misdiagnose patients' if they are 'difficult' (March 2016)

So you say, How can I approach this "delicate genius' and expect to get help? Well, my best advice is to write down all your symptoms in a laundry list like the one above. Highlight the ones that your online research has linked to cortisol imbalance. Present the list of the doctor and simply say, "With the multitude of symptoms I face, I'd like your help in testing me for cortisol and other hormone-related imbalances. If they argue or ridicule you, that is a clear sign, a cue... Find a new doctor.

Pituitary Patient Sues for Misdiagnosis

Pituitary tumors are not as rare as people think. Studies of autopsy reports show that up to 20% of the population -- one in five people -- have a pituitary tumor. However, doctors continue to dismiss patents with acromegaly and Cushing's, causing years of sickness and despair.  One can only hope this court ruling prompts a few MDs study up on pituitary disorders.

For the full story, click through to the BBC website. 

* * * * * * * * * *

From the Pituitary Network Association (www.pituitary.org):

–	Why Is Early Diagnosis Such A Problem? The confusing constellation of symptoms that can be produced by pituitary tumors and the difficult to visualize location make diagnosis very tricky. It is not uncommon for patients to have symptoms of either hormonal deficiency (caused by compression of the pituitary or its "stalk") or hormone excess (caused by unregulated production of hormones by the pituitary tumor). In a significant minority of patients diagnosis is not made until the individual has developed debilitating or life-threatening symptoms of heart disease or adrenal (uncommon), gonadal and/or thyroid insufficiency. Even in the 21st century death from a large pituitary tumor or hormonal deficiency still occurs, albeit rarely. Early diagnosis is usually a reflection of a high index of suspicion on the part of a physician. Unfortunately, many doctors have been taught that pituitary disease is rare, so it is not at the forefront of their list of possible diagnoses.
–	How Prevalent Are Pituitary Tumors/Disease? Autopsy reports and radiologic and MRI evidence from around the globe indicate that one out of every five people worldwide has a pituitary tumor. The earliest study took place in 1936, when Dr. R.T. Costello of the Mayo Foundation conducted a cadaver study and found pituitary tumors in 22.4 % of the population (Costello R.T. Subclinical adenoma of the pituitary gland. Am. J. Pathol. 1936; 12:205-214). Statistics have not changed much ever since. The clinical significance of these findings are critical to determine.
–	Why Are These Tumors So Common? We don't know because funding for benign brain tumor research is virtually nonexistent. That's about to change. In October 2002, Congress passed the Benign Brain Tumor Cancer Registries Amendment Act, which will force hospitals, clinics and doctors to report pituitary tumor incidence rates in the data collection of cancer registries. The problem remains diagnosis. No report of incidence rates is possible without it.

–

Why Aren't Pituitary Tumors/Disease Common Knowledge? There are four main reasons: Pituitary tumors/disease present a vast array of symptoms, and it's often the symptoms that get treated, not the disease. As a result, pituitary patients can spend years being misdiagnosed as their tumors grow. People with undetected pituitary tumors can die of heart attacks, hypothyroidism, adrenal insufficiency or water balance problems, all of which can mask the main cause: a pituitary tumor. Dollars spent. As a result, we have failed to answer the most important question: Why are pituitary tumors so common? There is a lack of education within the medical community and among the general public. The insurance industry hasn't caught on to the untold billions of dollars that could be saved through early diagnosis and treatment. Once it becomes clear that it's in everyone's best interest, the word will spread.