Opthamologist Round #2

I had my second opthamologist appointment today to be checked for Sjogren's syndrome (aka "sicca syndrome"). I was thankful that I wasn't charged another co-pay at the mistake of their office and I was also happy to hear that I do not have Sjogren's :)

I was however angered and annoyed at the eye doctor for his lecture on thyroid disease... "Well it's not really a disease, it's really not even a big deal at all. You will get medication that's basically like a vitamin you take every day and everything is fine". Really? Clearly you should continue your path as an eye doctor and leave the thyroid issues to the people who know what they are talking about.

Unfortunately most people with Hashimoto's also have numerous other health issues that are coexisting. After joining an on-line support group for people with Hashimoto's I have realized how much struggle is associated with it and how difficult it is for people to manage their symptoms and hormone levels, even with medication.

I am beginning to understand the frustration that many people experience when trying to find a good doctor who will take them and their symptoms seriously. Many people I talk to have gone many years experiencing the symptoms of Hashimoto's (or other autoimmune diseases) yet have been dismissed or misdiagnosed with depression/anxiety for years before they find a doctor willing to take a closer look. I am thankful to have an amazing rheumatologist that has treated my mother for many years. If you are in CT and reading this because you have Hashimoto's or think you may have some type of autoimmune disease and are looking for a good doctor please feel free to comment, I would be glad to send his office information your way... finding a good doctor is half the battle.

I contacted Dr. M's office today to request a copy of my lab results so I can see exactly what I have been tested for and what my exact results are numberwise. I also asked them to fax my results to my primary care office. I am still dealing with regular upset stomachs and can not get back to Dr.M until November but I would like to be tested for food allergies. I have an appointment scheduled with the APRN at my primary care office for Wednesday to talk about having a blood panel done for food allergies.

Attempt 1 at Tackling B12

Even though I'm not sure increasing my consumption of certain foods that contain B12 will even help I figured I would give it a shot. After all I don't know if my deficiency is a result of my body's inability to absorb the vitamin of the lack of foods I eat that contain B12.

So yesterday for lunch I made my first attempt at changing my eating habits. While ordering my lunch at work I decided I would try to eat chicken, so I ordered myself a buffalo chicken wrap... When I got the wrap I opened it up and cut the two boneless wings into very small pieces and even removed some knowing full well I was not going to like having the chicken in there to begin with. I wrapped it back up and took a bite...

As soon as I could taste the chicken and feel the texture I gagged and my stomach completely turned. I couldn't even eat the rest. I hated it. Imagine a food that disgusts you, something you would never choose to eat... now imagine putting it in your mouth and chewing it... gross right? That's how I felt about the chicken in my wrap. Now imagine taking everything out of your diet that you love and replacing it with the foods that gross you out... (I realize that is not necessarily what I am going to be doing, but at that point in time that was my thought process...)

I expected to dislike the chicken, I did not expect to feel sick over it, and I most definitely didn't expect the emotional reaction. The chicken experience made me realize that changing my diet is going to be much more difficult than I had anticipated. I felt really frustrated at my reaction to the chicken and tears came to my eyes, I thought to myself "how am I ever going to do this?" I held back the tears but I felt like crying. I realize that I should not be getting myself upset yet since I still have to talk to the doctor about the food questions, but I couldn't help but imagine having to change all the things I love to eat to all the things I hate to eat. I felt sad for the rest of the day and frustrated with myself. I will not give up on my attempts but I now realize how difficult my attempts may be...

Questions

September 2011

Since getting my diagnosis a few days ago, I have been endlessly researching anything and everything I can find online regarding vitamin B12 and Hashimoto's. Through my searching I have realized that I have a lot of questions for my doctor when I see him again in November. I have started a notebook dedicated to my findings and questions.

I am ready to do whatever I can to help my body and in turn feel better.

As I stated in my main narrative, the reason I started this blog was because I found another young womans blog about her journey with Hashimoto's. I found her blog the most helpful thing I have discovered on the internet thus far. It is very helpful to learn about the personal experience and journey of Hashimoto's rather than articles written online most likely by someone who has never had the disease. If you are reading my blog because you have also been diagnosed with Hashimoto's I highly recommend you read her blog as well especially because I am newly diagnosed and she has had much more experience with the disease than I have at this point in time.

http://hopeforhashimotosdisease.blogspot.com/2011/04/lets-start-and-very-beginningits-very.html


I also found a book "Hope for Hashimoto's" on Amazon that is written by Dr. Alexander Haskell, N.D. who has done a lot of work with Hashimoto's, the reviews on the book were outstanding so I ordered it and it was delivered today. I am very excited to start reading it.

http://www.amazon.com/Hope-Hashimotos-Alexander-Haskell-N-D/dp/1452854718/ref=sr_1_1?ie=UTF8&qid=1316901122&sr=8-1

I am hoping that by making specific changes to my diet I can be proactive and help my body through the disease.

After briefly looking into vitamin B12 I keep finding that the sources are red meat, chicken, and dairy products... all of which I rarely eat. Question #1 for Dr. M... Leafy greens? or meat and dairy? What can I eat to help my B12 levels? Dairy upsets my stomach and I really do not enjoy eating meat (at all), I would prefer to go without.

Also after processing the information related to Hashimoto's disease leading to hypothyroid I wonder if I should be expecting weight gain and how much? I would rather be proactive and change my eating habits to cater to that now rather than have to struggle with it later. I had a dream the other night that the doctor told me I was going to be very overweight. Having been very skinny my entire life this would be a significant change. Question #2 for Dr. M... What should I be expecting as far as weight gain?

After reading another blog and browsing some information online I have read that certain food ingredients are bad for the thyroid including soy... Question #3 for Dr. M... Are there certain things I could be avoiding that may help my thyroid?

I also realize that my upset stomach issues were not really talked about during my diagnosis appointment. Are my upset stomachs related to the B12 deficiency? Hashimoto's? or food alergies? I have read that many people with Hashimoto's have experienced intolerance to gluten and milk products. Most of my diet consists of gluten. I love love love pasta, bread, and just about any other carb I can squeeze into my diet...Question #4 for Dr. M... Were any food allergy panels done with the 16 tubes of blood I gave? If not can we please address that so I don't continue to eat foods that my body is rejecting?

November seems forever away, but I will be back to update on the status of my fatigue after a few weeks of vitamin B12 injections... maybe I will get over my fear of blood and needles after all of this :)

Diagnosis

September 20th 2011

I anticipated this day for a month, thinking about what my test results would be, wondering what I was even tested for with 16 tubes of blood. My biggest fear was to be told that everything came back normal. I didn't want to be back a square one, I didn't want to be dismissed, I just wanted some answers so that I could be on my way to feeling better.

As I sat down in Dr. M's office I could feel my heartbeat racing. He sifted through my chart of papers and began naming off the tests that came back normal. My heart sank and I felt like crying, but unexpectedly he came out with some things that did not come back normal. YES! ANSWERS! "Your vitamin B12 level is very low, your at a 129 and you should be up over 500"... I wasn't sure exactly what those numbers meant, but it wasn't hard to see the deficiency. He explained that this had a lot to do with my fatigue, but before I could begin to ask him questions he said that there was also something else that came back in the test. He informed me that I had Hashimoto's Thyroiditis. Huh? Hashi who? He explained that it was an autoimmune disease of my thyroid that was causing my antibodies to attack and destroy my thyroid. Due to the prevalence of thyroid disease on my fathers side of my family, I was not entirely surprised. He explained that there is no cure for Hashimoto's and informed me that it will 100% lead to hypoactive thyroid disease. I listened carefully to what he was saying to me, I wanted to remember everything so I could go home and do research. Dr. M then told me I would have to come to the office once a week for a B12 injection in order to bring my levels up quickly. He said that I should start feeling much less fatigued once my levels are brought up and once they are leveled out I would be able to be put on a tablet that goes under my tongue so I would not have to continue to receive the injections. As for the Hashimoto's there wasn't a whole lot to be done. I would have to go back in a month to have my thyroid tested again and it will have to be continuously checked. He explained that it was still testing normal because it is still functioning and the Hashimoto's had not destroyed it to an extent that would cause it to present itself in my blood work. Once your thyroid is destroyed you will be required to take medication daily in order to regulate the hormones that your thyroid once provided.

Dr. M also informed me that he received the information regarding my opthamologist appointment, however the eye doctor did not perform the requested test on my eyes. There was some misunderstanding in why I was being sent there. Despite my specific request regarding sicca syndrome, the opthamologist had given me a full eye exam as he would for autoimmune patients who are going to start medications and never tested for sicca syndrome. Dr. M asked that I call and reschedule another appointment with the eye doctor and reiterate the need for a specific test for dry eyes. 

I had never heard of Hashimoto's and knew very minimal about the thyroid gland so I couldn't really formulate any questions regarding that diagnosis. However, I did ask where vitamin B12 is found. Dr. M said that it could be found in leafy greens and I said "OK well I definitely don't have a problem eating that, I just wanted to ask because I don't eat a lot of meats". He gave me a lab form to go back for more blood work on my thyroid in a month and I scheduled another appointment to see him again on November 11.

I left the office feeling very happy that I had answers. Though it wasn't good news, I was glad to hear it. I'm not crazy... I have felt crappy for reasons. Now I could be on the road to feeling better. Things felt like they were looking up and I took a big sigh of relief.

Opthamologist

August 2011

After my appointment with Dr. M, I found out that my grandmother has sicca sydrome, so I made an appointment to see the recommended opthamologist to be tested as I was instructed. I explained to the woman who was asking me questions about my eyes that I was asked to go there by my rheumatologist to be checked for sicca syndrome. I received a full eye exam and had my eyes dilated for the first time in my life (which was not a wonderful experience). The doctor told me that my eyes looked fine and if I was going to be starting any medications with my rheumatologist that I would have to go back on a regular basis to have my eyes monitored as some of the medications may have very negative effects on the eyes. The doctor assured me that he would send over my exam results to Dr. M, gave me some silly sunglasses to wear to help with the sensitivity from the dilating, and I was all set to go.

Though I was hoping that maybe I would find some reasoning behind all my contact troubles, I was glad to hear that my eyes were good.

Dr. M

August 2011

During my first appointment with Dr. M (my rheumatologist), I knew I was good hands. He was very welcoming and made me feel very comfortable. The appointment lasted about an hour and during that time he asked me a lot of questions and it wasn't until I was answering all of his questions that I realized how many symptoms I actually had, how long they had been occurring, and how interrelated they were. He took a lot of notes, paused many times to think, and asked me specific and detailed questions regarding my fatigue, weight loss, stress, and upset stomachs.

He checked my blood pressure and felt my glands for any abnormalities and then asked me if I had been running a fever. I couldn't be sure, I hadn't really checked my temperature because I wasn't feeling sick meaning I didn't have a cold or a sore throat or feel any need to check it. When he checked my temperature we discovered that I was running a mild fever which he said was very important information. I was surprised that I was running a fever and wondered how long that had been happening for. He instructed me to regularly monitor my temperature. He also asked me if I had dry eyes. I thought it was a weird question and I was interested in the fact that he asked me that. I told him that I had never had issues with my eyes, but I had recently started wearing contacts instead of my glasses and had experienced nothing but issues with the contacts no matter how many different types I tried. He said that my eyes looked dry and gave me the name of a local opthamologist and told me to go there and get tested for "sicca syndrome" (aka Sjogren syndrome), an autoimmune disease of the eyes (and mouth) that results in reduced tear (and saliva) production.

When he finished with his assessment he told me that he does not diagnose without any hard evidence (abnormal blood work results) because he never wants to misdiagnose someone which happens often in autoimmune diseases due to the overlap of symptoms. He also reiterated the fact that many autoimmune diseases can take a long time to present in blood work and sometimes people live their whole life with normal blood work even though an autoimmune disease exists. I started to feel discouraged. Please don't let me have to continue to live like this without answers. I think he could tell that I started to feel hopeless because he looked at me very seriously and said "This may take time, but we will figure it out, you just have to promise to be patient". I was not going to give up so I was going to be patient for as long as it took. His next words provided me with some sense of relief. "I can't tell you for sure that you have an autoimmune disease, but given your family history and your symptoms the cards are stacked against you and if you were to ask if I think there is something autoimmune going on, my answer is yes I am confident that there is but will not confirm it until we have something more to go on." I understood and appreciated the honesty. He reminded me to remain patient and scheduled me to go down the hall to get some more blood work done explaining that he was going to be more detailed in his tests than those I had done at my primary care office.

Dr. M only provides test results in person so I scheduled my appointment to come back. Unfortunately for me the doctor was going on vacation for the first two weeks of September so the earliest appointment I could get was toward the end of the month.

I walked down the hall dreading this blood tests. I hate needles, I hate blood, I feel nauseous even having to do this right now but it has to be done. The phlebotomist  could see the anxiety written all over my face, smiled at me and said "you're going to be fine". As a grown woman I felt ridiculous for making my fear over something so minor so blatantly obvious but was glad that she was sympathizing with me. I sat down in the chair and as she tied the band around my arm to search for my vein I turned my head in the opposite direction. Ugh even the sight of my veins under my skin made me feel sick. Unable to find a "good vein" she took the band off and tried my other arm and I shifted my head in the other direction... She seemed to be having trouble and repeatedly told me to "just relax"... Alright lady, I'm trying to relax but you clearly don't understand how much this process bothers me. She finally decided to go back to the original arm and give it a try. After poking me numerous times she tells me that every time she tries to get my vein it goes down... Ew OK thats gross please don't tell me details, just do what you need to do so I can get the heck out of here. She then asks me to get up and run my arm under hot water in the sink. I'm thinking to myself, I just had blood work done recently, why is this such an issue now? As I stand at the sink with my arm angled down and the hot water running down to my hand I can feel my knees getting weak. In my head I'm repeating "You're a grown woman, this is ridiculous, don't pass out, don't pass out, don't pass out". She quickly turns the water off, rushes me back to the seat and tells me that we have to hurry before the vein goes back down, and ties the band around my wrist... OK now I'm panicking. I turn my head away and she sticks the needle through the top of my hand. As I'm reminding myself to breathe I look down at the metal tray next to me that is completely covered in little plastic tubes... I start to freak out and tell myself that there is no way in hell that those are all mine, they can't be, I count sixteen tubes, that would be ridiculous. I close my eyes and focus on my breathing... why is this taking forever? I wasn't counting but I could feel every time she took a tube off and added a new one. When she finally said "That's it you're all done, see you did it... all sixteen" I almost threw up on the floor. "Now don't use that hand for at least a half hour, that way you won't bruise terribly bad"...

I walked out of the office with bandages taped to my arm and my hand, looking like I had been beat up and feeling like I was going to have an anxiety attack. It was over, it wasn't painful, but I felt like crying. I drove home very shaken and craving a giant glass of wine (that I of course did not indulge in considering the fact that I was just robbed of 16 tubes of blood). The waiting game began there...

Doctor Visit 2 -referral

July 2011

The second appointment was brief. The APRN basically told me that my blood results came back normal but she was going to refer me to a rheumatologist due to my family medical history. Not really knowing what a rheumatologist was or what they did I happily agreed to go with the hope that I would find some answers.

After my appointment I talked to my mom about my referral and learned that the doctor she sees for her lupus is a rheumatologist. She asked me why I was being sent there if my blood work came back normal... and I didn't really have an answer... so I called the doctor's office back and the APRN explained that many autoimmune diseases do not present themselves in blood work and that she felt more comfortable having me see a doctor who specializes in that area. It seemed very logical to me and so I asked her to refer me to my mothers doctor...