Update: Hormones

I have an update following my recent appointment with Joanie. She reviewed my hormone level lab results which tested my Progesterone, Testosterone and Estrogen levels.  I forgot to ask for a copy of my labs for my records, so I cannot provide the reference ranges right now, but I do remember most of the information:

Luteal Phase (time of my cycle when labs were drawn)

Estrogen: high end of the reference range

Testosterone: normal range

Progesterone: lowest possible number on the reference range

I have been taking bio-identical progesterone since April of last year, without it I don’t know if I my levels would even be on the chart! Obviously my progesterone levels continue to be extremely low and my estrogen levels very high. I am hopeful that as I continue on Armour and continue to heal my adrenals that my body will be able to naturally refuel my deficient hormone levels.

It is no wonder that I have not been able to carry a pregnancy with such low levels of progesterone.  I am left to wonder if my body will ever heal itself in such a way that I can support a pregnancy naturally. This is one of the many questions I have for Joanie in a few weeks.

I have increased my zinc to 2,000 mg a day and Joanie has added Morinda Supreme to my regime again as my Candida continues to rear its ugly head.  I have also started to have some small rash breakouts on my skin.  When I showed the rash on my leg to Joanie she said immediately that it is likely the Candida.  She wrote a prescription for an antifungal cream and I left her office totally grossed out at myself. 

She also referred me to a new chiropractor and I will be calling to schedule an appointment soon. I think that is it for now. I have updated my treatment page.

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2012: Reflections on my journey so far

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I’m really tired to day. My head is fuzzy, but I’m going to try to put a couple of sentences together. I think that taking time to reflect on what has happened helps a person move forward in life.  I thought I might take some time to reflect on my health journey and how I discovered I was dealing with thyroid and other reproductive hormone issues.

A few days ago I said goodbye to a pretty wild year.  2012 was exhausting and painful but looking back I also see a great amount of progress and renewed hope.  Last year at this time I was grasping the reality that I was pregnant again and looking forward with joy and expectation. It was a very welcomed surprise and my husband and I were beyond excited to be parents. It didn’t take me long to start planning a nursery. I even started crocheting a little blanket. I knew that it was still so early but I couldn’t help but be caught up in the excitement of a new life joining our family. Fast forward to 4 weeks later and I found myself lying on an exam table while an ultra sound technician searched in quiet desperation for any signs of life in my womb. When she left the room without any explanation my husband and I sat in silence looking at each other. There just wasn’t anything to say out loud. I remember he held my hand and wiped my tears. About 15 minutes later, she put us on the phone with my Doctor who first told us we were expecting twins but that there was no sign of life.  It was a cold and dark January day and I found myself reliving the same nightmare for the third time.

The weeks following my miscarriage I remember praying and pleading that I might find some answers to my most consuming question, “why?”  The next few months I poured myself into researching the terms I’d heard my doctor use: “recurrent miscarriages” and “unexplained miscarriages.” It was all I had to go on and at some point in one of my searches I stumbled on the word “hypothyroidism.”

I read everything I could find about hypothyroidism over the next few months.  I remember pouring over the list of symptoms and feeling like I had discovered a missing piece to the last few years. It was eye opening to me think how far back I could remember experiencing several of the symptoms and yet I would doubt myself that I was making too much of it. 

I was too nervous to talk to a doctor about it.  I was afraid I wouldn’t be believed and honestly, I expected they would just tell me I was depressed and put me on depression and anxiety meds.

In March I made an appointment to see a new chiropractor as I had been experiencing some flare ups of pain in my lower back, and my left ankle I had injured a year earlier while I was trying (key word: TRYING) to get in shape so I could run a half marathon and hopefully lose some weight. About a month into my “training plan” I hurt my ankle after a run and was told I had Achilles Tendonitis. It was really painful but after a lot of physical therapy I did get the green light to start running again. I worked up to 10 miles a week (which wasn’t a lot but it was something). I was always confused by the fact that I never saw a change in the scale even though I was exercising and watching my diet. I started juicing fruits and vegetables that summer too. It was really frustrating because I really found that I enjoyed this sport and it helped ease stress and anxiety and for a little while I would feel an increase in my energy. I gave up trying to run around September of 2011.

Anyway, back to the Chiropractor appointment. I went for my first appointment and filled out a “new patient questionnaire” which asked for health history and current symptoms. I was surprised to find that the questionnaire asked about a lot of other things besides my back.  I decided to check all that applied including feeling depressed and anxious, trouble sleeping and fatigue. I also included in the notes section that I’d had 3 miscarriages. I sat down with my new doctor and he asked me a couple of questions about my back and ankle and had me stand and do a couple of exercises to measure my level of discomfort. 

The next part totally surprised me.  He pulled up a chair and sat directly in front of me.  He asked me to explain my anxiety, fatigue and depression and the miscarriages. So I told him. I told him that for as long as I can remember, I always feel tired.  Not just “I need to get to bed earlier tonight” tired but after at least 8 hours of sleep I wake up to feel knuckle dragging exhaustion by 1:00 in the afternoon.  EVERYDAY.  I told him how I find it really hard to concentrate at work or any task for that matter and that sometimes, more often than I would like to admit, I don’t want to leave my house.  I explained that I wasn’t afraid or paranoid to leave my house; I just couldn’t muster the energy to walk out my door. I told him about the babies and that I had lost them all before 9 weeks and no one could tell me why.

I remember saying, “I don’t know what’s wrong with me” to which he quickly replied “I do.” He said, “Robin, I think you have a thyroid condition. I can tell just by looking at your neck.”

I really don’t want to make this sound all dramatic, but when he told me this I literally burst into tears.  I couldn’t believe what he had just told me. I had been reading everything I could find and yet I struggled to believe it could be happening to me.  He let me sit there and cry and offered me a Kleenex. I said “You must think I’m crazy!  I just met you, but I have been wondering for some time if this was happening to me.  It means a lot that you just said that.”  He encouraged me to find a doctor that would prescribe desiccated thyroid, like Armour.

A month later, I met Joanie.  It’s been quite a journey that continues to bring surprises but today I increased my dose to 90 mg of Armour Thryoid.  I am hopeful that I will continue to feel better and that my other hormone and digestions issues will improve also.

On another note, I had my annual eye appointment a few weeks ago (just before Christmas) and would you believe that my vision has actually improved in my left eye from my appointment last year?  It’s a slight change, but I was very surprised to hear this considering how much work I do on the computer.  She adjusted my prescription and I just received my new contacts.  I don’t know if this could be related to being treated for hypo, but who knows!

It is amazing how everything is connected.

Looking back, I feel like I am very far away from a year ago.  I feel that my prayers were answered, which is a great blessing.  I still have no idea what may or may not happen in the future, but I know that I am making good strides in my health.

That is all I can ask for now.

Good Things

I have waited to write any updates until I believed that the changes I felt were real and a sign that I am making progress.  I think I’m ready to fill you in and will have a post up very soon. 

Until then I have updated my treatment page from my appointment this morning with Joanie. 

It’s good, my friends.

Focus On The Good.

An update:

I am in the midst of some big changes since my appointment with Joanie almost 3 weeks ago but before I begin I have to say this continues to be such an unpredictable journey. I really have no idea where I am going! As confusing it has been for me to understand what is going on with my health, I imagine it is as confusing to anyone who reads this.  

After 6 months of hearing that “thyroid issues are not presenting in you,” despite ongoing symptoms and after supporting my adrenals with hydrocortisone, Joanie decided at my last appointment that it was time to start me on Armour Thyroid. In fact, the conversation went something like this:

Joanie: Robin, how would you feel about us trying Armour? You haven’t responded the way I thought you would on hydrocortisone alone.  I think it’s time we try dessicated thyroid.

Me: (Forcing myself to not jump out of my chair and start hugging her) Well…yes, (very calmly) I would be very open to that. 

I am stunned, frustrated that it has taken this long, but very happy that she is willing to explore thyroid treatment for me. 

Before I explain the details I want to review my experience with Hydrocortisone. When I got the saliva test results back and learned I was in Maladapted Phase II of Adrenal Fatigue I started on hydrocortisone in early August. At first, I really started to feel some relief of some of my most troubling symptoms: anxiety and fatigue/lethargy. I finally realized how vital my diet is to my health when I learned I am actually gluten intolerant and adopted a strict gluten and dairy free diet as well as no sugar, no coffee and no simple carbs to help heal my leaky gut issues which I believe are improving. At the end of August, she increased my hydrocortisone from 7.5 mg daily to 12.5 mg. I was hopeful that this would help me feel even better as she said it was pretty clear I was dealing with adrenal issues. Instead, it had the opposite effect. I started to feel a real increase in anxiety and depression. I gained 5 pounds in a month (NOT awesome). I was weepy, avoidant and overwhelmed constantly. For a few weeks I doubted my ability to continue to work. I was a mess and my fatigue only made matters worse. My posts during the month of September are very telling of this. I was withdrawn, which is my “normal” way of coping when I feel overwhelmed.

I shared all of this at my last appointment, and Joanie immediately backed me off the hydrocortisone to only 5 mg a day (2.5 am, 2.5 noon). Once I reached 5 mg I started on 30 mg Armour Thyroid for 2 weeks, then to 60 mg daily. I just started 60 mg yesterday. As I was stepping down the dose of hydrocortisone my anxiety and especially depression started to ease off and become more manageable.

About a week after I started on the 30 mg of Armour, I noticed a change in the way I felt during some of the most unexpected times. Like at 4:30 am when I wake up for no reason and can’t fall back to sleep because I am anxious about the fact that I’m not asleep or my mind is racing thinking about all of the things I need to do that day and to not forget this or that.  Instead, on most occasions, I’ve been able to relax my mind and drift back to sleep until it is time for me to wake up. This morning, I didn’t wake up at all before my alarm. Or when I get home from work and I am tired and hungry, but the first thing I need to do is start dinner and take care of my 3 dogs that are also very hungry and have missed me all day. For the last week, I’ve been able to do this most days without breaking down into tears because all I really wanted to do was crawl into bed and pull the covers over me and sleep until morning. Instead, I have realized that I have had energy to spend time playing fetch with my dogs, make dinner and still have a little energy to take a relaxing bath, or to spend time reading, or sewing. On Saturday, I went to the grocery store to shop for this week. Usually, this trip exhausts me and puts me in a very foul mood for the rest of the day. I dread it. I loathe it. I have grocery aisle rage—no one is safe. It wasn’t until I was unloading the bags from my car to take into the house that I realized I was thinking about what I wanted to do after I had unloaded the groceries. Usually I’m lucky if I get everything unpacked before I am lying on the couch.

TMI Warning:

One thing I am concerned about is my menstrual cycle. I seem to be going in the opposite direction. Most recently I went from a 23 day cycle to 21 days.  I’ve been taking progesterone since April, only 2 months have I lengthened my cycle to 24 days.  21 days seems really short to me.  I see Joanie again next week, I will definitely talk to her about this.

That’s my update for now. I will be curious to see how I feel over the next week. I am cautiously optimistic.

I also wanted to share a blog I found recently, Hypothyroid Mom. Dana brings a well informed voice to the tragedy of miscarriage and hypothyroidism as she lost a child after being diagnosed as hypothyroid. I am SO GLAD that she has started this blog and I am reading her posts with a fine tooth comb. It’s really nice to know there is someone out there who can relate to my nightmare. I would encourage you to read her blog, too.

ThyroidChange.org

In “real life” I work as an Advocate for severely wounded, ill and injured Soldiers who were medically retired as a result of their service connected injuries and conditions. I wear a lot of hats in this job, but one of my primary duties is to make sure that the medical needs of the Veterans I work for are being addressed and they are receiving the care they need. I will do what it takes to make sure the voice of the Veteran, their spouse or caregiver, is heard by medical professionals responsible for their care. Even if this means sitting in a medical appointment to ensure the Veteran has a chance to give feedback and ask the questions they want answers for.

I am often amazed at how annoyed and short the Doctors are with their patients when they try to share how medications they are on have increased symptoms, not helped, etc. For those who struggle with memory loss related to Traumatic Brain Injury (TBI) they often take a little longer to formulate their questions and this seems to frustrate some Doctors which increases the anxiety of the patient. If I am in the appointment I can help the Veteran remember the questions they have so they are not rushed out the door. I am professional and respectful in my work, but there are a few Doctors who avoid eye contact with me in the halls following these encounters. I choose to take this as a sign I’m doing my job for the Veteran. 🙂 This isn’t my experience with all the Doctors I work with, there are many who are very dedicated to their profession and to the population they serve. 

All this to say, it is no surprise to me that many thyroid patients report struggling to find Doctors who will listen to their health history and symptoms and are willing to examine the link between many common symptoms (like depression, anxiety, unexplained weight gain, fatigue) and thyroid and autoimmune disorders. 

Recently, I was invited by ThyroidChange.org to join a community of bloggers who are sharing their health journey. I made contact with the founders to make sure they understood that at this time, thyroid issues had been ruled out in my case, but they still wished to include this blog on their “Member” page. 

You can read more about the mission of ThyoidChange and different thyroid patients experience here: patientexperience.com

I am also including information from the ThyroidChange website:

ThyroidChange, a web-based initiative, unifies the international thyroid community (patients, organizations, groups, blogs, websites and physicians) and mainstreams the voice of thyroid patients who are left symptomatic and not being assessed or treated with current options.  Our global network will empower the individual patient with access to credible, current knowledge. Our success will increase thyroid disease awareness and future research.

ThyroidChange supports existing and future thyroid advocacy efforts with the strength of a united global thyroid community. By informing members of current initiatives within our community, it stimulates mutual collaboration for our shared common goal for change. Individual patients will find support and opportunities to self-advocate.

ThyroidChange facilitates the achievement of our goal: increased thyroid patient access to current assessment and treatment options and therefore, optimal thyroid health. Thyroid dysfunction affects 1 in 4 individuals, and can begin at any time. Our advocacy will encompass hyperthyroidism, hypothyroidism, autoimmune thyroid conditions, thyroid cancer and other thyroid issues of concern to our community.

I am honored to be included among the list of other Members. My motivation for changing the focus of this blog was to put my experience out there in case someone found similarities to their own health issues and it helped them find the treatment they need. I hope that this platform will get my story out to more people who can benefit from it.

You can find my blog, bluebirdthriving, on the Members page at ThyroidChange.com. While you are there, please read and consider signing the petition.

Today’s post, brought to you by the Vitamin E and Omega 3

Last week I saw my NP to see how I was doing on the adrenal meds since she will be gone for the whole month of September.  I’m going to start calling her by name, because she is an actual person and is a critical part of my journey so it feels strange to not use her name. 

So, here you go: Her name is Joanie and she is well on her way to becoming one of my favorite people, not just because she helps me feel alive and human.  I find her to be the kind of person who looks for joy in all things and you can’t help but be drawn to the energy she gives out.  I am so grateful I stumbled across her name and clinic.

We discussed several things during my appointment: 

Hydrocort: increased dose from 7.5 mg a day to 12 mg a day.  Now I take 7.5 mg am, 2.5 mg noon, 2.5 mg 4pm.

I was still experiencing the afternoon/evening crash on the 7.5 mg dose and in the last week since I increased to 12 mg I can definitely feel a difference in my energy during the 5-9 pm hours. I really noticed this yesterday when my husband and I were at a store.  On the drive home I glanced at the clock and was amazed to see it was almost 8 pm and I still felt pretty alert and alive.  Amazing.

When I do get tired, I still crash pretty quickly, so I have no plans to try my luck and stay out past 8:30/9. 

I’m such a party animal. Zzzzzzzzzzzz.

Ashwaganda Adrenal Adaptor: Now I take one capsules in the morning and one at night before I go to bed.  This is to try to extend my adrenal support during sleeping hours in hopes that morning won’t be so miserable for me.  I’m nowhere near “morning person” levels, but I have noticed the last few mornings I do feel more rested when I wake up.

Magnesium: I was taking 400 mg magnesium after breakfast with the rest of my supplements, but according to muscle testing results during my appointment, my body indicates needing this in the afternoon.  Now I take it with my 4 pm Hydrocort dose.

Flax Oil and Vitamin E: I have added Flax Oil (Omega 3) and Vitamin E to my daily regime.  This is related to the ongoing process of healing my “leaky” gut.  I have been struggling with stomach discomfort even though I have maintained a gluten free diet consistently since it was confirmed I am gluten intolerant.  It’s very strange to think about the fact that my body doesn’t work right and doesn’t get the nutrients it needs even though I feel that I have a pretty good awareness of a healthy diet.  It’s frustrating because I don’t show any results of my eating habits.  My hope is that if my energy levels continue to improve and I take the time needed to strengthen my adrenals I can return to a fitness routine, which may help my metabolism but as it is now, I’ve be instructed to avoid starting anything strenuous.  “Relaxing walks and gentle yoga” are about the only approved activities for me at this time.

I take 1 tablespoon of flax oil in fresh “green” juice I make at home with my juicer.  I decided to start juicing vegetables again at home to help my body absorb them easier than eating raw veggies because my body has to work harder to break them down. 

After discussing all my med and supplement changes our conversation turned to the always pressing issue on my mind.  I asked her what she felt was a realistic time frame to consider trying for a baby.  Her response: “Let’s stay on our current track and see where we are in a year.”  This isn’t what I hoped to hear, but honestly, I expected such.  I don’t feel confident that I have made enough progress to take the risk of trying for another pregnancy right now.  I’m not sure I have the strength to lose another one, although I said that after the second miscarriage too.

There is still a lot of work to do and I believe more will discovered in regards to my fertility issues.  There has been no change to my cycle: 23 days (like clockwork) which, by the way, results in 15-16 cycles a year.  No wonder I’m such a hormonal disaster! It’s like a rollercoaster ride I can’t get off of.  Joanie believes this is because there is a pituitary gland issue. 

On another note, this Friday, August 31, was my due date for the twins I lost in February.  I’m dreading this day as it brings up a lot of emotions for me.  I plan to take it easy and will be focusing on taking care of myself.

I have no other choice.

I love this portrait by Vladimir Volegov.  In my counseling I have been talking a lot about being a mother.  My therapist, Carole, has encouraged me to work on embracing this part of me. It is a difficult place for me to go, but this helps me picture myself as a mother. When I look at it I feel some peace. Maybe even a little joy.

Vladimir Volegov

“She was a genius of sadness, immersing herself in it, separating its numerous strands, appreciating its subtle nuances. She was a prism through which sadness could be divided into its infinite spectrum.” ― Jonathan Safran Foer, “Everything is Illuminated”

Progress

A lot has happened in the month of August so far, and it’s still early in the month.  I have a lot to cover in this post.

Before I dive in, let me review the last few months.

In April I met my NP and discussed my health history and symptoms.  She ordered blood work which looked at everything: TSH, Free T-3 and T-4 and Reverse T-3, Iron, B12, Vitamin D. Pretty much a laundry list of things. I changed my diet by eliminating dairy, gluten and simple carbs from my diet, started a probiotic and Morinda Supreme as she diagnosed me with candida and “leaky gut”.  I know, that just sounds gross, and it really is. 

If there is one thing I learned quickly, it’s that your guts have A LOT to do with how you feel.

There was a delay at the lab and so my results took twice as long to get back. When I met with her in late May, at that time, my blood lab results were “relatively good” and she determined that I was not hypothyroid just really stressed and low in my Vitamin B’s and Vitamin D.  She did agree to start me on Lugol’s Iodine solution (6 drops, daily) to see if that would help my fatigue, anxiety, weight, etc when I pressed her for an explanation as to why I felt so drained and agitated all the time and my temperatures were low.  She also increased my B Complex, and Vitamin D3. 

Over the next few weeks, I did notice a subtle improvement in my energy (any improvement was noticeable) but I still struggled with nearly constant anxiety and all the fun stuff that comes with that: avoidance, irritability, exhaustion. 

It was a really discouraging couple of months.  I expected that my blood work would have bright flashing hazard lights indicating thyroid issues and it was a huge let down when that didn’t happen but my symptoms persisted.

I was encouraged by my husband to continue to look for help for my anxiety and depression and so I entered counseling to help me process everything that was going on: my grief from the pregnancy losses, my health, my vocation, the challenges I experience daily just getting out of bed.  All along I have said that I just want to be healthy and find out what the problem is. I am willing to recognize that the last few years certainly justify feeling depressed and I am not a stranger to the benefits of counseling as I have found great healing and renewal through this process in years past. 

It’s work, though!  Whew!

So far, counseling has brought me some great insight and my therapist  is a very kind and genuine woman.  Her office is my safe haven where it’s all about me and I can let out all my thoughts my complaints and frustrations. It’s also a place where I learn new ways of coping and looking at things. I am committed to working on my whole self: body, mind and spirit.

In July, my husband, who is also treated at the clinic I go to, had an opportunity to mention to my provider what he sees me struggle with and she told him that we should do a saliva test to check for Adrenal Fatigue.  I had an appointment with her the following week and we agreed to do the test. 

On August 1st I had an appointment to find out the results from the saliva test.  Before she started to explain she looked at me and said, “I don’t know how you get out of bed in the morning.” I chuckled and said, “Well, it’s not pretty.”

Trust me. It isn’t.

I have been reading a lot about adrenal function and cortisol.  As I understand it, cortisol is one of the hormones the adrenal glands release to prepare us for challenges, including “fight or flight” situations. Cortisol, also known as a “stress hormone,” works by increasing blood pressure and blood sugar (for energy). These are helpful physiological responses in the heat of a stressful situation, but if they continue throughout much of the day, weeks or years, the body will suffer. Sustained levels of cortisol can destroy healthy muscle and bone, slow down healing and cell regeneration, disrupt metabolism and digestion, and compromise your immune system.

To help me explain my results, I took a picture of the graph that shows my “Circadian Cortisol Profile:”

image

 

The light grey shadow you see is considered normal range.  As you can see, I start the morning out low and just keep crashing.  Even though I am considered normal range by 4pm and midnight, she explained that I am still so low for “normal”.  I struggle throughout the day with energy, my anxiety is highest in the morning and then I feel more fatigued through the afternoon and evening.  I wouldn’t consider the way I feel as normal, either.

The saliva test also tested my Cortisol-DHEA Correlation. My results are in the picture below:

  
image

In order to explain this accurately, I’m going to refer you to this link: DHEA and Adrenal Imbalance, by Marcelle Pick, OB/GYN NP

Results showed I am in what is considered “Zone- 4- Maladapted Phase II”.  I’m just going to quote directly from my lab paperwork: (this) “represents a marginal cortisol output with reduced DHEA levels reflecting a limited adrenal response…this suboptimal response is any response not consistent with a normal diurnal cortisol production pattern.  This condition is usually the outcome of chronic and protracted stress exposure.” 

Uh, yeah!

A surprising result from this test was that I was found to be positive for Gliadin Ab, or Gluten Intolerance.  Borderline range for this lab was 13-15 U/ml.

A positive result is anything greater than 15/mil. 

My result was 32 U/mil which was described to me as moderate to severe gluten intolerance. 

I was surprised to learn this, although it made a lot of sense as to why I felt better when I consistently eliminate gluten. 

I think that this has been the slowest realization to sink in because I am faced with challenges every day.  I find myself repeating “I am gluten intolerant. When I eat gluten, my intestines are inflamed and my body doesn’t absorb nutrients I need.” 

I have read a lot about gluten over the last 2 years, where it hides and how to cook most “normal” things without it, so I’m not completely at a loss.  My greatest challenges are being prepared and holding the boundary when others I am with don’t have this issue.  At least now I have a medically diagnosed reason to be gluten-free.

I guess it feels more “official” and helps me feel justified when I explain it to people.

Adrenal Treatment:

I already updated my treatment page a few days ago, but let me explain in detail. Our plan to strengthen the adrenals involves taking Hydrocort at specific times throughout the day. I am working up to 7.5 mg (5 mg am, 2.5 mg at noon).

My NP has not prescribed DHEA support at this time as she wanted to see how I respond to the Hydrocort.  She also prescribed a supplement called Ashwaganda, an adrenal adaptogen that I also take in the am and at noon.

I started this medication just over a week ago and I am still building up to the full dosage.  I still feel extremely tired, but I can say I have noticed a lot of improvement in my anxiety, especially in the morning.  I definitely still feel anxious, but it’s more subdued than a week ago.  I am hoping that my energy improves over the next few weeks too. 

I’ll leave it at that for now. 

I still want to talk about what I have to teach myself about adrenal fatigue, fertility and how to effectively treat myself but I will save that for another post. 

I also have some very important information about thyroidchange.org, but I want to give it my full attention so I’m saving that for my next post coming soon.