My 1st Appointment with Dr. Berry

Today I had my first visit with Dr. Berry at the Little Rock Diagnostic Clinic.  I schedule my appointment back in December and my original appointment was scheduled for the end of July, but I got a call two weeks ago asking if I was able to take an earlier appointment.  I said – “Yes!”

I have heard so many wonderful things about Dr. Berry and I was really looking forward to the appointment.  I have two friends who have seen her before and they were both very complimentary.  I was told to expect her to spend an hour with me – an hour!

The pre-appointment paperwork was extensive, but it was very thorough.

My appointment was on May 20th at 8:30am and I was asked to arrive 1 hour before my appointment time.  I wasnt thrilled about having to leave the house at 6:30 am, but I was definitely ready to try a new doctor!

Dr. Berry will have been the 5th doctor I have seen in 4 years.  I have really struggled to find good medical care.  It seems like most doctors just want to push you through the door and collect your co-pay without even pretending to listen to what you have to say.  At least this has been my experience.

The check-in process went smoothly and Dr. Berry was in my room and chatting with me by 8:45.  She spent a good 45 minutes listening to my medical complaints and reviewing my new patient paperwork with me.

We talked about my foot pain, my thyroid symptoms, my fatigue, my hip and back pain, and my stomach issues.  I left with a few tentative diagnoses, a treatment plan, orders for blood work and x-rays, and a prescription for physical therapy on my back and hips. The diagnoses and treatments are preliminary pending labs and x-rays.

Feet – probably Plantar Fasciitis.  Probably related to my previous pregnancy. Massage every morning with a frozen water bottle and do foot stretches twice a day.  Make sure to wear shoes with good arch support.  

Back and Hips – probably related (at least in part) to  my previous pregnancy.  Possible scoliosis.  Hips and back are not lined up as they should be.  This could also be causing my knee pain.

Stomach – constipation and possible ovarian cyst. Also, possible lack of nutrient absorption. Treat with a diet of 25 grams of fiber per day (or Metamucil) and a daily dost of Miralax.   Follow up with ultrasound via Dr. Berry’s office or my OB’s office within 48 hours of severe pain incident.  

Thyroid – Possible lack of absorption. Stop taking generic and take name brand Synthroid.  This will make sure I am getting a consistent dose of medication.  Scheduled ultrasound of thyroid to compare size to 2013 ultrasound since the thyroid was found to be enlarged from manual exam.

Fatigue and Brain Fog – Many possible issues.  Probably related to lack of nutrient absorption. Start taking a prenatal vitamin.

I left Dr. Berry’s exam room and immediately went to the lab for blood draws.  They took so many vials of blood! Then I had to leave a urine sample.  After theses samples were collected I walked to radiology, where they took several x-rays of my hips and back.

My last stop of the day was to stop at the scheduling desk to schedule my thyroid ultrasound (they couldnt get me in right away) and the schedule my follow up appointment and another set of lab work to be taken a few days before my next appointment.

I go back again in 3 months.

Overall I was highly satisfied with my visit to Dr. Berry.  She listened and had good advice and genuinely seemed concerned for my welfare.  I asked her about becoming my general practitioner and she said that she would be glad to, but that she would not prescribe the phentermine I am currently taking for weight loss.  I am near enough to my goal that I think that is fine.  I will continue to see the doctor prescribing the phentermine until I reach my goal and then move all my medical care to Dr. Berry. I hope to have reached my goal by the end of summer.

Next week I will call my insurance and find out what to do, as next steps, to follow up on my prescription for physical therapy.

 

 

Hashimoto’s: 3 years since my diagnosis

Hashimoto’s: 3 years since my diagnosis

January is Thyroid Disease Awareness Month.  In recognition of this, I thought that a post about my struggles with Hashitmoto’s Thyroiditis was timely.

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Before I go into my thoughts, I want to state very clearly that this is my story.  I know lots of people who have thyroid issues and they feel like their lives and health are fully normal when taking their daily dose of Synthroid. Everyone with thyroid problems reacts to them differently, experiences different symptoms, and reacts to treatment differently. This is my story, not anyone else’s.

My initial diagnosis from my family doctor, in 2012, was Hypothyroidism.  After several months of constantly adjusted treatment, my TSH levels were never in the “normal range,” so my doctor referred me to a Endocrinologist.  This specialist tested my antibodies and did a thyroid ultrasound and diagnosed me with Hashimoto’s Thyroiditis.  I only saw this specialist a few times before I quit seeing him, in favor of another Endocrinologist.  Frankly, he was an ass and had a terrible bedside manner.  He refused to talk to me, telling me he would “send me a letter” and when I inquired about dealing with the weight gain caused by my condition, he told me to “eat more salad” over his shoulder as he walked out the door.  My second Endocrinologist was very nice, but he turned me off by refusing to do blood work 50% of the way through my pregnancy because he said “if your levels havent changed yet, they aren’t going to.”  Following this statement, my OB ordered my bloodwork and medication until after my baby was born.  Following my daughter’s birth, I started seeing a new Primary Care doctor.  I am currently on a waiting list to see a Internist, because I am tired of my symptoms being ignored just because my TSH is in the “normal range.”

I was diagnosed 3 1/2 years ago with Hashimoto’s  and the only improvements I have seen are a lessening of complete exhaustion  (at one point I was sleeping up to 20 hours a day), lessening of weight gain, ability to lose weight with medical intervention (phentermine), and an improvement in my ammunition system (which I credit to removing gluten from my diet).

I am on my 5th doctor and on a 7 month waiting list for doctor #6. So far all the doctors generally ignore my symptoms.

The only meds I have been able to get prescribed are levothyroxine. While my TSH and T4 are checked regularly, other tests are rarely done or have only been done once. Generally my inquiry for more tests is met with the doctor ignoring me or making me feel dumb. I’ve had my antibodies checked once, my vitamin D checked once, and my free T3 and free T4 checked once or twice. I’ve also been tested for anemia. That’s it.

My symptoms include: fatigue, difficulty swallowing/”thick saliva”, dry skin, itchiness, difficulty sleeping at night, occasional restless leg syndrome, waking up tired after a full night’s sleep, easily bruised , brain fog, forgetfulness, halitosis, receding and bleeding gums, seborrhetc dermatitis (I think – this is a self diagnosis, but again the doctors have been ignoring me), hair loss, nail ridges, keratosis pilaris, anxiety, gritting teeth/clenching jaw, periodic hot flashes (primarily at night), difficulty regulating temperature /cold intolerance, varicose veins, IBS, difficulty losing weight, sensitivity to gluten, muscle and joint pain, and tingling/numbness in legs and feet, pain in soles of feet.

We can all agree that when the thermostat is set to 75 degrees I shouldn’t need to sleep with three blankets, an electric shawl around my shoulders, and a heating pad between my feet – all while fully dressed, right?

I am very happy to say that to date I have lost 30lbs (based on pre-pregnancy weight) and that I am 10 to 15 pounds from my pre-diagnosis weight, but 100% of this weightloss had been attributed to the phentermine.  I am scared to death of what will happen to my body after I go off this medication.  I am scared that the weight will pile back on and I am scared that I will start reverting back to my super fatigue state.  Right now, I strongly believe that the phentermine is keeping my energy levels fairly normal.  I know most people experience rapid heart rate and a hyper state on phentermine, but on days I dont take it, I feel like a zombie.  Even on days I take it, I fight brain fog, but on days I dont take it, I really have trouble functioning.  I guess I think that it is masking my super fatigue symptoms.

Again, I know lots of people suffer from thyroid issues.  Thyroid problems are one of the most common illnesses in women.  However, I am only 32 years old and I most days I feel like I am living detached from my body and that my body cant be mine because a 32 year old shouldnt feel like I do.  Everyday I think: how bad will my feet hurt today?, Will I be able to focus as I drive to work today or while on the phone during my conference call?, Should I take my electric shawl to work today to use in conjunction with my space heater?, Will my staff think I dont shower because my scalp is flaking so badly?, Oh, how long have I been scratching that spot on my arm – there are scabs there now?.  Are these normal thoughts for a 32 year old?

Why should I be willing to wait 7 months to see a doctor (#6)? Why are my symptoms ignored? Why wont someone run a vitamin deficiency panel or consider putting me on a treatment other than Synthroid?

Could I live my life and put on a happy face, letting the world think I am happy and healthy? I could, but I am honest with myself and honest with those who live their lives around me.  I am not the person I think I should be – I think I could be happier and healthier, but I need someone to listen to me. I want a doctor to care. If my symptoms are untreatable and I just have to live with them, then fine – but damn it, at least someone should care enough to find out if something is causing my symptoms and if that something is treatable!

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My name is Ashley Graves and I have Hashimoto’s.  I am 32 years old, a wife, a mother, a professional, and an educated woman.  I will learn everything I can about my illness and I will advocate for the best healthcare available to me. I will live my life to the fullest I am able and I will not let other people tell me how I “should” feel.

In order to be the best mother I can be, I need to show my daughter that I am important, that she is important, that our health is important. I want to be in my best possible health, so I can be there for her and I want to ensure that she grows up knowing that advocating for yourself is important.

My illness maybe lifelong, but my symptoms dont have to be.  I am dedicated to being my own best advocate.

 

Weight loss update w/ Exciting News!

This past weekend I had the joy of buying new blue jeans.  Now, normally this is the worst torture imaginable, especially for someone who has yet to come to terms with her weight gain (see my posts on Hashimoto’s) and for whom proper blue jean fit has always been hard to find.

Much to my immense excitement, I was able to purchase a pair of size 12 jeans!  Now this may not seem like a big deal to most people.  In fact, I never thought I would be excited to buy a pair of size 12 jeans, especially when I was still a size 6 (Ha!).  However, since I went up 3 dress sizes between my diagnosis with Hashimoto’s in March of 2012 and my wedding in October of 2012 and an additional 3 dress sizes between my wedding and the start of my pregnancy in December of 2013, my perspectives have changed!

When I bought my wedding dress in January 2012 I weighed aprox. 145 lbs and wore a size 6, when I got pregnant I weighed aprox. 183 lbs, and when I delivered my daughter in August of 2014 I weighed 225 lbs.  Today I weigh 168.6 lbs!  I have dropped from a pant size 16 to a size 12, a shirt size XL to a size L (medium if its man sized or unisex), and size L dress (as long as it give a little – hazards of a busty girl).

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Left is me today wearing my new jeans. Right is me trying them on at Old Navy.

In other news….

I can finally wear my wedding and engagement rings again!!!!  

During my pregnancy, I swelled up really dramatically (I couldnt wear any shoes other than wide flip flops after 12 weeks) and as a result I had to take my rings off (and I barely got them off) at 10 weeks!  Today was the first day that I have been able to wear them again!  I guess its just another example of how pregnancy and giving birth change your body, since I was down to my pre-pregnancy weight within a couple of months of delivering.

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My wedding and engagement rings fit!

And of course my husband had a silly response to my excitement…

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Trying to Conceive and getting pregnant

For many people who knew me when I was younger this post may seem odd.  I never wanted children.  Throughout puberty and adulthood I had been pretty steadfast in my belief that I didnt want children.  I was afraid that I was too selfish or that I would be a bad parent or that I couldnt be enough for my children.  Then I meet my husband.  Children were the line he drew in the sand of our relationship.  I needed to come to terms with my feelings and it was hard.  I love my husband and I know he loves me.  I struggled for a long time before I finally decided that it wasnt that I had changed, but that my life had turned a corner I never thought it would.

It wasnt that I didnt want children, I just never thought I would be in a place in my life where children would fit or that I would be in a relationship stable enough to support children.  I never thought I would want to be married before I met my husband, but after meeting him I quickly knew that I wanted to marry him.  That I wanted to spend my life with him.  Learning that I wanted children so dearly, was just another part of this journey in self discovery…..

My husband and I got married on October 6, 2012 after having been together since 2009.  We did everything backwards to the traditional relationship milestones: 1.) date, 2.) buy a house, 3.) raise a child (we got custody of our 16 year old nephew), 4.) get engaged, 5.) get married.   We loved our life in rural Arkansas with our 3 dogs (2 are ours and 1 we are fostering for my brother in law).

When we got married I was 29 and my husband was 30.  We knew that we wanted a family and we knew that we weren’t getting any younger.  Most of our friends and relatives our age have had kids for many years now.  I told Michael that if we had more than one child that I wanted them to be about 3 years apart.

 Knowing that I didnt want to be giving birth and raising an infant after age 40 (in an ideal situation) and that in a perfect world, we didnt know how long it would take us to conceive a child, we started trying to get pregnant right away.  I quit taking my birth control pills a few days into our honeymoon.

I am a librarian, and what do librarian’s do?  We research.  So that is what I did.  I found and read message boards, I learned about ovulation cycles and basal body temperature.  I read What to Expect Before You are Expecting and several other books and articles.

On our 1 year anniversary we still hadnt managed to get pregnant.  I have Hashimoto’s Thyroiditis, so I had my Endocrinologist run extra labs to see if there was anything thyroid related preventing us from getting pregnant.  He found nothing he felt was causing our infertility.

I have always been curvy and big chested and have heard my whole life about my “child bearing hips” and I couldnt get pregnant.  Yes, I know there are people who struggle for years with infertility.  I know several and I know my struggle was no where near the trial that they had been facing, but I still felt inadequate.

We made an appointment with a fertility specialist in October  that was scheduled for December, but after learning that my insurance would only cover the most basic testing once per lifetime made us reconsider our options.  We choice to cancel the appointment and keep trying on our own until my annual exam at the end of January.  We decided that if we still hadnt conceived by then we would ask the doctor for her recommendations.

As it so happens we got a positive pregnancy test on December 1st (15 cycles of ttc)!  I was so nervous and excited.  I took two tests to be sure.  Michael wasnt home when I found out, but months earlier I had bought a super cute t-shirt that said “Daddy est. 2014.”  I put this t-shirt out on the bed along with my two positive tests and when he got home I told him to come into the bedroom because I had a present for him.

He was so shocked and so excited.  He hugged me and asked “are you sure?”  He wanted to shout the news from the roof tops, but I asked that he wait.  I wanted to tell our families at Christmas and I wanted to wait til the end of the first trimester to tell work (I live in a small town, so once one person knows the whole world knows).

We met with a nurse at my OB/GYN clinic on December 18th which was basically just blood work and we meet with the doctor on January 9th.

This blog entry will post to the public on January 22nd, and their might be a few follow up posts that go hand in hand with this one that will post around that time too.  After that point, all blog entries about my pregnancy will be posted the same day I write them.  I am so excited for this journey!

Gluten Free: a beginner’s guide

I started my Gluten Free journey in June of this year, after educating myself about my Hashimoto’s Thyroiditis and ways I could reduce my symptoms and make myself healthier.

I wont go into a lot about my illness, because I have posted about it before, but I will say that since going gluten free, I have been healthier.  Prior to changing my diet, I was sick a lot and when I had a cold or something similar it hung around for weeks.  Since my change in diet, I have not been sick once.  My headaches have mostly disappeared and I have not had a cold or sinus infection.  The one exception to this was the one time I ate macaroni and cheese (even though I knew better).

Enough of that.  This post is not about my health.  This post is about the resources I have found that make eating gluten free easier.

Before going gluten free myself, I had heard a little about the diet, but I really hadn’t paid that much attention.  Therefore making the change was a huge task.  I educated myself about how my body reacted to gluten (mine is an immune response), what gluten actually was, what types of foods I was going to have to give up, and where I could find information about gluten free alternatives.

This post is what I wish I had found on day 1.  No its not a fancy list with eloquent reasons why or introductions to each link, but you know what? I’m not a fancy person.  I like facts, and I dont like fluff.  So here is a list.  A simple (and by not means all inclusive) list of websites, blogs, etc. that I have found useful in the last several months of my gluten free journey.  I hope it helps.

Informational Resources about Gluten and Hashimoto’s :

Discussion Boards about Gluten and/or Hashimoto’s:

Websites and Web Resources:

Gluten Free Blogs (My favorites):

Other Resources:
  • Living Gluten-Free for Dummies (Book)
  • Gluten-Free Made Easy As 1, 2, 3 (Book)
  • The Essential Gluten-Free Restaurant Guide (Book)
  • 2012/2013 Gluten-Free Grocery Shopping Guide (Book)
  • Find Me Gluten Free (App)
  • Is That Gluten Free? (App)

Hashimoto’s and going Gluten Free

In March of 2012 I was in a car accident that caused me to my left wrist (my dominant hand).  I suffered a lot of pain, shock, panic attacks, and gained back all the weight I had lost in 2011 (25lbs).

 In May of 2012 I was diagnosed with low thyroid function by my GP.  My most obvious symptom was chronic exhaustion, but looking back I had dry skin, dandruff, trouble focusing, and (after reviewing medical records a year later) reduc.d vision.

I was getting married in October of 2012, but I kept gaining weight, no matter what I ate or did.  It was so frustrating.  By the time we got married I had gained 40 lbs from the time I bought my wedding dress in January.  I still get sad every time I think about it, because it barely fit and it wasnt nearly as perfect looking on my oversized body.  Thats what happens when you go from a size 8 to a size 12.

Picture 1 is the day I bought my dress in January 2012 and Picture 2 is my wedding day in October 2012

After working with my GP for a year, I still didn’t’ feel like myself.  I didn’t feel like I needed 20 hours of sleep in a 24 hour day anymore, but I was still exhausted all the time and I was still gaining weight.  In March of 2013 I started seeing an Endocrinologist.  He ran some tests and did a sonogram of my thyroid and diagnosed me with Hashimoto’s.  Hashimoto’s is an autoimmune disease in which your body attacks your thyroid, causing low thyroid function (although some Hashi’s patients fluctuate from hypo to hyper).

I am now taking Levothyroxine at .150 micrograms 6 days a week.  I still have hypothyroid symptoms, but the Endo says my bloodwork is “in the normal range.”

I have talked to a lot of people who have thyroid problems and many say that they never felt “right” even after years of medication.  I have talked to people who have weight problems all their lives.  I have read and read and read (I am a librarian after all) and I have learned alot, but mostly I have learned that thyroid patients are all different and Endos are all different, so it takes a lot of work to find the right lifestyle balance and a doctor that will work with you for optimal results.

My current doctor, Dr. Boehm, is not my ideal doctor.  I have seen him twice and I know I need to look for someone else to treat me.  I keep gaining weight and he refuses to discuss my weight, diet, and health with me.

Since my wedding in October I have gone up another clothing size and I now wear a size 14.  I am unhappy at my size and I have started using MyFitnessPal to watch my calories and try to lose weight.  I know it will be a struggle.

I have read that some Hashi’s patients need to take in significantly fewer calories than the standard person working at weight loss and need to exercise 3 times as much for similar results as a non-Hashi’s patient (like everything, some people disagree).  Lots of what I have read focuses on the importance of a gluten free diet for thyroid patients.

I started working towards a gluten free diet on May 28th and to date have only miss-stepped 3 times that I know of.  So far the hardest part has been the lack of cakes and cookies (which I don’t need anyway, but I am addicted too) and easy to prepare meals without having to cook from scratch.  I did make a trip to Little Rock (45 min from my home) to shop at a health food store and I was able to pick up a few ready to eat items.

This is going to be an interesting journey…