[Pseudo-Cushing’s] Michigan woman nearly dies after herbal supplement found to be laced with steroids

MADISON HEIGHTS, Mich. (WXYZ) – Since 2004, the U.S. Food and Drug Administration has received more than 26,000 reports of adverse events and complaints about dietary supplements.

Jody Higgins of Madison Heights, Michigan made one of those complaints to the FDA, after she says she found out the herbs she had been taking were making her seriously ill.

“I really thought I was going to die I was getting so sick,” Higgins said.

Back in 2015, Higgins says her legs started hurting.  She says she didn’t have great health insurance, and she was hoping for a more holistic approach, so a friend referred her to Far East Ginseng Herbs and Tea in nearby Sterling Heights.

“They suggested that I take something that was called Linsen Double Caulis. I had never heard of it before, and it appeared to have all herbs on the label,” Higgins said.

Higgins says for a while, she felt better, and when she stopped taking the Linsen Double Caulis, the leg pain returned. So, she says she kept taking it for nearly a year, even though she started noticing strange symptoms.

“Within four months I had gained 80 pounds,” she said.

She suddenly had facial hair growth, severe facial swelling, extremely swollen ankles, and had dark purple stretch marks all over her body.

“I wasn’t recognizable,” said Higgins.  “I couldn’t stand for longer than 2 minutes. I couldn’t cook. I couldn’t wash my clothing. I could barely get in the shower.”

After visiting several doctors, Higgins was eventually referred to University of Michigan Endocrinologist Dr. Ariel Barkan.

“The minute that I said I had been taking a Chinese herbal remedy, he said ‘you’ve been poisoned. I know it.’ Those were his exact words,” said Higgins.

“Her situation was pretty shaky,” Barkan said.

Barkan sent the Linsin Double Caulis herbal supplement to the Mayo Clinic for testing.

“They were loaded with Dexamethasone … [which] is a medication.  It’s a synthetic steroid, very potent, very long acting, and if we take it for quite some time, we develop what is called Cushing Syndrome,” said Dr. Barkan.

Higgins was diagnosed with Cushing Syndrome, and Barkan says she could have died if she hadn’t sought help.

“The mortality for untreated Cushing Syndrome is 50% within 5 years,” said Barkan.  “ … immunity is completely suppressed. And when you don’t have immunity, the first virus, the first germ may cause [a] fatal infection and you will die.”

Higgins says once she stopped taking the Linsen Double Caulis, the facial hair went away, but she’s still struggling with her weight. Barkan says her health should improve, although it will take time.

Both doctor and patient say they have contacted the FDA about this, and they each have a warning about taking herbal supplements.

“Please just be very cautious,” Higgins said.

“Don’t touch it. Don’t touch it, you’re playing Russian roulette,” said Barkan.

Jody Higgins says she met with an investigator from the FDA’s criminal division.

An FDA spokesperson would only say that they do not discuss possible or ongoing investigations.

The lawyer for the store where Higgins says she purchased the supplement told us the owners will not be commenting on, but the owner did say they no longer sell this product.

From http://www.fox4now.com/news/national/madison-heights-woman-herbal-supplement-caused-life-threatening-illness

A Phase III Study of Osilodrostat to Treat Cushing’s Disease

CLCI699C2302: A Phase III, Multi-center, Randomized, Double-blind, 48 Week Study with an Initial 12 Week Placebo-controlled Period to Evaluate the Safety and Efficacy of Osilodrostat in Patients with Cushing’s Disease

Purpose

In people with a disorder known as Cushing’s disease, levels of the hormone cortisol are very high in the urine and blood. Lowering cortisol levels relieves the symptoms of Cushing’s disease. Osilodrostat is an investigational drug that inhibits an enzyme needed for cortisol to be made.

In this study, researchers are assessing the safety and effectiveness of osilodrostat in patients with Cushing¿s disease and observing its ability to reduce cortisol levels. In the first 12 weeks of the study, patients will receive osilodrostat or a placebo (inactive drug). After week 12 and continuing through week 48, all patients will receive osilodrostat. Patients will then have the option to continue taking osilodrostat for up to 100 weeks into the study, if they wish.

Osilodrostat is taken orally (by mouth).

Eligibility

To be eligible for this study, patients must meet several criteria, including but not limited to the following:

  • Patients must have Cushing¿s disease with elevated levels of cortisol in the urine.
  • An acceptable amount of time must have passed between the completion of prior therapies and entry into the study, to allow for a sufficient “washout” period.
  • This study is for patients ages 18 to 75.

For more information about this study and to inquire about eligibility, please contact Dr. Eliza Geer at 646-888-2627.

Protocol

17-351

Phase

III

Investigator

Co-Investigators

Diseases

Kiko Matthews, Pituitary Cushing’s Survivor Solo Rows Atlantic to Raise £100K For Hospital That Saved Her Life

Adapted from an article at http://metro.co.uk/2017/07/24/ex-teacher-is-rowing-across-the-atlantic-solo-to-raise-money-for-hospital-who-cured-her-brain-tumour-6773756/

You’d imagine if you’d never set foot in a rowing boat before, apart from, say, an abortive attempt in a boating lake age 9, that you would set yourself a fairly tame goal for your first challenge when you did finally take up the sport.

Not so Kiko Matthews. The science teacher-turned-paddle board instructor and adventurer, this time last year a total beginner in a rowing boat, set herself the challenge of rowing solo across the Atlantic – before she’d actually picked up an oar.

Not only does she plan to raise £100,000 for King’s College Hospital with the row – after they saved her life when she was struck with a rare disease – but she plans to break the female world record for a solo Atlantic crossing while she’s doing it.

The previous record for a woman rowing solo across the Atlantic is 56 days, the male record is 35.

Kiko plans to do it in 45, taking 11 days off the current female record.

Her determination and dedication indicate that she’ll do it too.

She has been training daily for 7 months since she made the vow (she hadn’t even been drinking when she made it, she tells me) in order to smash the record for the 3,000-mile trip.

On the way she will encounter storms, freezing nights, scorching hot days, sharks – and a whole lot of solitude. ‘I have to be skipper, medic, my own best friend – and, sometimes, no doubt, my own worst enemy,’ she says.

She’ll have an emergency button in case of crisis — and not much else, besides her equipment and her ego.

A rigorous regime of on-land and on-water rowing, circuits, weights and cross-training with cycling and running is preparing her for the 16 hours a day of rowing she’ll have to put in to make the record crossing.

The months of 4am wake-up calls are, as you’ll see from her Facebook and Instagram posts, made somewhat easier by incredible sunrises, sunsets and glass-like oceans, but they are nonetheless gruelling.

However, they will have set her up for what will be six sleep-deprived weeks where she will try to shoehorn what sleep she can – a four-hour chunk and a few cat naps throughout the day – into the eight hours she has to eat and rest when she is not rowing.

No matter how much work she is putting in, the challenge is ambitious — but her chances are improved immeasurably not only by her tenacity (you have to meet her to believe it) but the fact that the boat she is using for the crossing is the same one that was used by the current male solo Atlantic World Record holder, Charlie Pitcher.

He set the new record for solo male crossing in 2013, taking 35 days to row the 3,000 miles in the carbon-hulled, 6.5m ocean rowing boat Soma of Essex.

His boat was the first of its kind to have the rower facing backwards into the waves rather than rowing forward, which made the boat far more aerodynamic and helped him to shave 5 days off the previous 40-day record.

And, as Kiko says, ‘when you’re in the middle of the Atlantic with nothing for miles either side, you don’t really need to see where you’re going anyway.’

Now, Pitcher has not only lent Kiko his record-breaking boat, but he’s helping to train her too. And, having been exposed to the whirlwind that is Kiko Matthews, he is confident she can achieve her goal.

‘I met Kiko at a charity function we were both involved with and we just hit it off immediately, like we had known each other for years,’ he says. ‘I wanted to lend her the boat because I believe she has what it takes to smash this, and not many others do,’ he says.

‘To break a tough world record like this, you need all the right tools in your bag. Kiko has the full house.’

The mammoth physical undertaking is all the more impressive when you understand how far Kiko has come health wise.

The once fit young woman was so rapidly debilitated by this mystery disease she had to drag herself upstairs on her hands and knees, yet doctors could not find out what was wrong.

Unlike most people with Cushing’s, who experience the condition worsening over a long period, sometimes years, the size of Kiko’s tumour meant the symptoms were aggressive and dramatic.

As she deteriorated, she was quickly referred to King’s College Hospital where she lay for a month believing she would die before doctors were able to diagnose Cushing’s.

Even then, her potassium levels were too low for her to survive surgery so she was taken to intensive care unit until she was strong enough for doctors to operate and remove the tumour.

Kiko says now that those were her darkest times. ‘I couldn’t see, I couldn’t speak properly or think. I was too weak to move,’ she says.

Ultimately, the disease could have proved fatal. But with the tumour finally removed, the levels of cortisol in her blood reduced from 3,000 mcg/dL to 30 mcg/dL in three days.

Within five, the brain fluid stopped dripping from her nose, the swelling in her body had gone down, her memory returned and diabetes and other symptoms vanished.

Soon after her recovery, Kiko left her role as a science teacher to set up SupKiko, a company teaching paddle boarding, and a charity, The Big Stand, that gives opportunities to young people and those with mental health problems.

While she still leads paddle boarding groups, most of her time is now spent training for the Atlantic crossing, which sets off from the Canary Islands in January.

….

Ironically, both the challenge and fundraising attempt for KCH has added poignancy now.

A few months into her training, Kiko began to feel ‘strange’ symptoms and, as they developed, she began to suspect the return of Cushing’s.

An MRI detected a 3mm tumour on her pituitary gland, confirming her fears, and she found herself back at King’s where Kiko says that the doctors, who remembered her aggressive and rare case 8 years ago, have been ‘fantastic’.

She is booked for surgery on 1 August when surgeons will go in through her nose to remove the tumour quickly so that she can continue her training.

‘With the help of an amazing team of nurses and doctors, I’ll be 100% fine for my row in January. I’ll make sure I am,’ she says.

‘The tumour returning has only made me even more determined to break the record and raise the money,’ she says.

‘The doctors will have saved my life not once, but twice.’

Read the entire article at http://metro.co.uk/2017/07/24/ex-teacher-is-rowing-across-the-atlantic-solo-to-raise-money-for-hospital-who-cured-her-brain-tumour-6773756/

We’re 17 Years Old!

happybirthday-2015

It’s unbelievable but the idea for Cushing’s Help and Support arrived 17 years ago last night.  That’s a long time for anything online.

I was talking with my dear friend Alice, who ran a wonderful menopause site called Power Surge, wondering why there weren’t many support groups online (OR off!) for Cushing’s and I wondered if I could start one myself and we decided that I could.

The first website (http://www.cushings-help.com) first went “live” July 21, 2000 and the message boards September 30, 2000. Hopefully, with these sites, I’m making some helpful differences in someone else’s life!

The message boards are very active and we have weekly online text chats, occasional live interviews, local meetings, email newsletters, a clothing exchange, a Cushing’s Awareness Day Forum, podcasts, phone support and much more.

Whenever one of the members of the boards gets into NIH, I try to go to visit them there. Other board members participate in the “Cushie Helper” program where they support others with one-on-one support, doctor/hospital visits, transportation issues and more.

Of course, we now have a Facebook page and 2 groups.  Both are secret, so if you want to join, please email  or PM me for an invitation.

Other sites in the Cushing’s Help “Family”

 

maryo colorful zebra

A Retrospective Review of 34 Cases of Pediatric Pituitary Adenoma

Abstract

Purpose

The purpose of this paper is to study invasiveness, tumor features and clinical symptoms of pediatric pituitary adenoma, and to discuss some inconclusive results in prior studies.

Methods

We retrospectively reviewed 34 cases of children (<20 year-old) who were pathologically diagnosed with pituitary adenoma and surgically treated from 2010 to 2017. Data of general information, clinical symptoms, invasive behaviors, surgery approaches, and tumor features were collected and analyzed.

Results

Sixteen boys and 18 girls aged from 12 to 19 years old were included. Prolactinoma was most suffered, followed by GH-, none- and ACTH-secreting pituitary adenoma. Invasive behaviors were observed frequently and suprasellar extensions were most found. Macroadenoma account 70% of all cases. Meanwhile, unlike prior studies, a significant raise of incidence on invasive tumor and pituitary adenoma apoplexy were observed. Craniotomy and transsphenoidal surgery were both applied with zero mortality. Nine cases occurred with transient hypopituitarism and diabetes insipidus. Three cases of tumor recurrence received secondary surgery or radiotherapy.

Conclusions

Invasive behaviors were more frequent than previous prediction. Craniotomy is worth considering for total tumor removal. Pituitary adenoma apoplexy needs further studies since its different features between children and adults in present study. Specialized care and teamwork of neurosurgeons, pediatricians, and endocrinologists are important.

Keywords

Pediatric pituitary adenoma Invasion Pituitary apoplexy Transsphenoidal surgery 

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