Medical Catch 22


Aging is a process not for the faint of heart. 

In our teens and twenties we seem invincible. 

During our thirties we might start to see some grays and faint wrinkles, but overall we generally feel pretty good. 

Even our forties aren’t that bad. Might start to feel the start of some achy arthritic joints, and see more grays and wrinkles, but overall we’re still feeling pretty peppy.

Then the fifties hit and things really start to change, at least for me they did. Maybe not right away, but by my mid-fifties I could feel myself slowing down.

Part of the slowing down process is certainly tied to Hashimotos, an autoimmune disorder involving chronic inflammation of the thyroid. Over time, the ability of the thyroid gland to produce thyroid hormones often becomes impaired and leads to a gradual decline in function and eventually an underactive thyroid (Hypothyroidism).

I was diagnosed with Hashimotos in 2010 at the age of 49 after a bout with pneumonia that went sepsis and wrecked havoc with my entire body.

Medication was not and still is not an option because my thyroid levels remain within normal range. Even after having half my thyroid removed last fall because of a suspicious nodule.

The nodule was benign Thank God, so the threat of cancer was removed from the equation. Amen to that!

With meds out of the question, I knew I had to find other methods to combat the symptoms of hypothyroidism. The key symptoms being fatigue, weight gain and brain fog.

I discovered doctors were not very helpful when it came to advice in this area and found out quickly I was on my own.

Coincidently around the same time, I caught an interview with Gina Lee Nolin, of Baywatch fame, where she discussed her personal health struggles that went undiagnosed until she found Dr. Alan Christianson, a naturopathic medical doctor for Integrative Health in Scottsdale. His book “The Complete Idiot’s Guide to Thyroid Disease” became my saving grace. 

https://www.facebook.com/thyroidsexy/

After reading Dr. Christianson’s book, I started to play with diet changes and adding supplements. In doing so, I was able to thwart off some of the fatigue, weight gain and some brain fog.

The key thing was going gluten and dairy free. Plus avoiding soy and fluoride, which can interfere with the function of the thyroid. I also added ginkgo biloba and ashwaghanda, but my endocrinologist recommended I stop the ashwaghanda because it can skew thyroid function blood tests.

Over the years I have faired pretty well with this issue, but honestly I think I was too busy raising my Son and helping to care for my aging Mom to completely feel the impact. Or, should I say take the time to notice. 

It’s only the past year or two, as I hit my late fifties and my Son is off at college that I’ve truly noticed how much I’m slowing down. My energy levels just aren’t what they used to be. Some of it’s age, but I know part of it is my thyroid. 

This however is the least of my concerns. 

In the fall of 2016, back and belly pain I thought was a reaction to an anti-viral med I was on for shingles, turned out to be a renal infarction, which is a blockage of blood flow to the kidney.

https://www.mayoclinic.org/diseases-conditions/renal-artery-stenosis/symptoms-causes/syc-20352777

I was told this is very rare and needed to be admitted to the hospital to find what caused the infarct. After almost a week, they had exhausted all their testing except for one, which I opted to have done on an outpatient basis.

The result of this test showed that I have Fibromascular Dysplasia, FMD for short.

FMD is an even rarer vascular disease that causes one or more arteries in the body to have abnormal cell development in the artery wall. As a result, areas of narrowing (called stenosis), aneurysms, or tears (called dissections) may occur. If narrowing or a tear causes a decrease in blood flow through the artery, symptoms may result. Many people with FMD do not have any symptoms or signs on physical examination and are diagnosed by accident during a radiology scan for another problem.

Which is exactly how mine was diagnosed. Something I’m extremely grateful for.

FMD is most commonly found in the arteries that supply the kidneys with blood (renal arteries) and the arteries called the carotid and vertebral arteries, which are found in the neck and supply the brain with blood.

Before my diagnosis, I had no clue what either a renal infarction or FMD was, so I did a lot of digging on line. I don’t want to get into a lot of details beyond the basics, but if you’re interested in learning more, I included a link below for the Fibromascular Dysplasia Society of America.

http://www.fmdsa.org/fmd_info/what_is_fmd

Needless to say this diagnosis took me for loop. My head was spinning with questions.

How on earth did I get this disease?

Will my kidney be fine?

What do I do now? 

Is there a cure?

Fortunately the doctors were able to give me answers. 

At this time it’s not know what causes FMD. There are a few theories, but nothing has been proven yet. 

Kidneys regenerate and repair themselves, so with time my kidney would be back to normal. I would just need to see a nephrologist on a regular basis to monitor kidney functions and blood pressure, which can be a sign that the FMD is getting worse.

Because my situation was mild, and had no symptoms other than the infarct, the treatment was a baby aspirin, once a day.

At this time there is no cure, but as long as I stuck with the baby aspirin, saw my nephrologist, and had additional tests to confirm the kidneys were the only area impacted by FMD, I would be in good shape.

OR SO I THOUGHT.

All was going well until last summer when subtle gastrointestinal issues began to trigger. This was something very new for me.

Unless I was sick, my gastrointestinal tract ran like a fine-tuned engine. I had a healthy diet: high fiber, low fat, gluten-free, predominately dairy-free and drank plenty of water. Plus I watched my sugar and carbs. And did my best to exercise regularly. My biggest vice was enjoying an adult beverage on the weekend.

So, these subtle issues were very noticeable. In the beginning they didn’t seem like anything to be too alarmed about, but by October things had escalated to the point were I could barely eat without running to the bathroom. I was living on broth, boiled chicken and rice. 

Needless to say, this warranted a visit to the gastroenterologist. I won’t get into details about the tests that were done, but things like a parasite or infection were ruled out quickly. All that was left was a colonoscopy with biopsy.

By December I had a diagnosis, Microscopic Colitis, an inflammation of the colon that a health care provider can only see with a microscope. Inflammation is the body’s normal response to injury, irritation, or infection of tissues. The exact cause of microscopic colitis is unknown. However, researchers have found links between microscopic colitis and certain medications, which is the case in my situation.

That medication being baby aspirin.

https://www.niddk.nih.gov/health-information/digestive-diseases/microscopic-colitis

There is a possible link to thyroid disease too, but prior to taking baby aspirin I had no issues, so the gastroenterologist linked the problem directly to the aspirin.

NOW WHAT?

I had noticed being off aspirin for two weeks prior to my thyroid surgery and then for the colonoscopy, my symptoms lessened. At the time I had no clue the aspirin was the problem, but once the diagnosis came in it was like an epiphany.

The problem though was I couldn’t completely stop the aspirin.

Add to that, I couldn’t take the meds given to help ease the symptoms of the microscopic colitis because when I tried I had every side effect under the sun.

So once again I was on my own because the doctors had no advise other then to take the meds.

Research lead me to additional diet changes that might help.

Upon investigating I discovered two of the biggest culprits that can aggravate the already inflamed gastric lining were things I was already avoiding, gluten and dairy. In addition though I discovered other triggers could be caffeine, sugar, chocolate, spicy food, high-fiber foods like nuts, seeds, raw fruits and vegetables and alcohol.

That about wiped my existing diet out, although with all I had been going through I had already discovered high-fiber and spicy foods were not my friend any more.

SO, basically I had to convert to a bland, low fiber diet, and limit my caffeine and alcohol, which wasn’t much to begin with.

PLUS, I began to experiment with alternating aspirin on one week, off the next.

All this had limited success. Things weren’t as bad as they had been, but there were still issues.

My nephrologist suggested I go off the aspirin for two months along with the dietary changes to see if symptoms subsided.

They did until I went back on the aspirin. Even taking it every other day brought on issues.

I just wanted to have a day where I didn’t have discomfort, or worry that a gut gurgle could be more than that.

My frustration lead me to see a nutritionist.

The nutritionist herself had been on a journey to obtain her own optimal health after a series of health challenges, so she is very passionate about helping her patients get their lives back. On her journey she discovered Nutrition Response Testing and Functional Medicine.

Functional Medicine addresses the underlying causes of dysfunction, ultimately restoring true health & vitality. The goal of is to remove the cause & restore normal function.

This allows the nutritionist to understand & treat the cause, not the symptoms. Symptoms are often the body’s normal response to an underlying dysfunction. In the conventional medical model, a drug is typically given to treat the symptom. Quieting the symptom may bring (some) relief, but the underlying dysfunction is often still present. 

There are many that find Functional Medicine to be a form of quackery, but I can tell you my nutritionist has done more for me than any physician has. In the short time I’ve been seeing her I’ve seen a noticeable difference in my gastrointestinal tract. I’ve even started to feel more like me.

https://www.bethlehemnutrition.com/

I had to be committed to wanting to be healed because this new adventure to heal my gut came with even more restrictions in order to help narrow down what is triggering my gut inflammation. In addition to the restrictions listed in the things to avoid with microscopic colitis the nutritionist wanted me to avoid, or eliminate corn, coconut, banana, oats, tomatoes, tuna and inflammatory oils (which are all vegetable oils). Plus eat complex carbohydrates vs. ones with a high glycemic index. 

She also noted to eat a protein with every meal and eat organic as much as possible, which are two things I already try to do. AND, she noted I couldn’t cheat with the gluten or dairy, which I had done occasionally. I could not have either if I wanted my gut to heal.

Keeping a food diary would be essential to tracking what foods are triggering symptoms.

Plus, she wanted me to start taking a supplement called marshmallow root, which in liquid form is added to water, which I drink in the morning and before bed. This was to help soothe the irritation and inflammation in the digestive tract.

https://www.healthline.com/health/food-nutrition/marshmallow-root

Needless to say after this visit, I felt a bit sorry for myself. I had already started restricting myself so much, I felt like what’s left. Especially when so many gluten-free products are made from corn.

I got over feeling sorry for myself quickly though; because what mattered most was being able live my life without chronic gastric issues.

The nutritionist has also been fine-tuning my supplements, which is something no provider has ever really considered, except for taking vitamin D.

This supplement fine-tuning included changing the time of day the supplement was taken which impacts how well it actually works. Something I honestly was not aware of.

It has only been four months now since I’ve been working with the nutritionist and I can honestly say my gut is getting better. AND, because of the adjustments with my supplements I have more energy and sleep better. 

SO, after what seemed to be an endless circle of one thing leading to another I finally feel like I’m taking my health back, which is a huge part of my journey to rediscover myself.

If I don’t feel healthy, how can I explore all the facets that make up me?

I realize there are many people out there struggling with health issues far greater than mine, but after encouraging words from one of my sisters, I also realized there may be those who are facing similar health challenges and by sharing my journey may be able to help.

If you have experienced your own Medical Catch 22 I would love to hear from you. Who knows, maybe we can help each other, or by sharing our stories find someone who has traveled the same road and found an answer.

One final note I must acknowledge is that those who have experienced a dissection due to FMD have a far scarier story than mine. In all honesty I’m one of the lucky ones.

© Mariann E. Danko and Waking the Woman, 2019. All rights reserved.

Goddess Masthead © Pamela Danko-Stout and Waking the Woman, 2019. All rights reserved.

Aging – 123rf clipart – copyright majvecka

Gastric Distress – 123rf clipart – copyright Luciano Cosmo

Epiphany – 123rf clipart – copyright artqu

Food Journal – 123rf clipart – copyright yupiramos

3 thoughts on “Medical Catch 22

  1. Pamela Danko-Stout

    It has been a LONG journey for you and I admire your persistence and discipline. You did not give up, instead you continually searched for new solutions. You did not complain and feel sorry for yourself either. You believed that there had to be an answer. Sometimes, you have to try alternative therapies and return to more natural solutions. You could be a role model for many because you did strike out on your own rather than blindly taking the medication prescribed. I hope that medicine will become more integrated and support preventative and alternative routes to healing. Just look at the results with CBD oil, this could be the answer to our current opiod crisis. So, get the message out support people on their journeys, people who are willing to go the extra mile to obtain the answers they need.

    Liked by 1 person

      1. Pamela Danko-Stout

        Good Lord! Me your role model? I do have to keep on keeping on especially for the sake of my family, (cats and geckoes included). Thank you for the compliment.

        Liked by 1 person

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