Thursday, June 30, 2011

Another bump in the road..

Knowing where to begin is proving to be difficult.. I've been hit with so much new information recently that I've been left kind of staggering, trying to regain my footing in this new change in my life. About 3 weeks ago, I was diagnosed with Hashimoto's Disease. I've been absorbing as much new material as possible, and I feel like I'm still trying to catch up. When you find out you have a disease, the first thing you want to do is learn all about it and try to understand. I am in a better place now, as far as knowing what's going on with my body, but I feel like I still have a lot to learn. I'm trying to take it all in stride and remain positive, but it's difficult.

I guess I should start at the beginning.. For the past few months, I haven't been feeling well.. To be honest, I haven't been feeling well for a lot longer than that, but recently, it's made a bigger impact on my life. I was constantly in pain from cramps in my legs and lower back, I was feeling nauseous and had an upset stomach daily from the medication I was taking (the wrong medication, but we'll get to that), my skin was getting super dry and cracking, my hair was falling out and felt like steel wool, I was packing on the pounds even though I was on a strict diet, and I was really starting to get depressed. It was hard to get out of bed, to get dressed, to do anything. I had no energy and no desire to do anything. I was a complete train wreck emotionally, crying all the time for no reason.. I put on a smiling face for my friends and family, but I was really starting to lose it. I knew something was wrong and that I had to do something about it. I made the decision to go see a general practitioner here in Washington since the last 3 doctors I had seen in the last year were so field specific. The neurologist, the gynecologist, and the reproductive endocrinologist.. I felt like we had too many fancy titles. I just wanted a plain ol family doctor who could help me. I found one online that was close to home and made an appointment mid May.

I went in with 3 major concerns. My leg and lower back cramps, my depression, and my weight. We briefly went over my trying to conceive history and I described my symptoms to her. She had me take a little "quiz" that was supposed to help her diagnose depression, and she said that based on the results of that quiz alone, she felt comfortable diagnosing me with Situational Depression. She said the stress of TTC, moving, and losing my job in the last 6 months were most likely the reason I was feeling this badly. I was offered anti depressants right there, but she asked if I felt I could wait a little longer. Because although she thought they would be beneficial, she wanted to draw some blood and run some tests to see if anything else was really going on. And boy, am I glad she did. I told her I could definitely wait longer before taking any kind of pills, and I left her office with a lab slip in my hand.

The next weekend, I went to get my blood drawn. That was an event in itself... To make a long story short, I had to be poked 5 times and go to two different clinics before they could get any blood out of me, and they had to fill 7 vials. Both ladies taking my blood sure weren't helpful in making me feel better. They kept gawking at the lab order saying that this was so many tests and so much blood. We managed to get it done, and I made a follow up appointment with the doctor to hear the results on June 15th. They told me that was the soonest appointment they had. On June 2nd around noon I had a message on my cell from the doctor's office saying the results were in and that they needed to see me as soon as possible.. I called back, and at first all they would tell me was that they wanted to see me tomorrow if possible to discuss the results in person. I told them I had a follow up appointment on the 15th and she put me on hold, talked to the doctor, and said that they canceled someone else's appointment tomorrow to have me come in. That's when I really started panicking. I said they were really freaking me out and asked if something was wrong with me, and she said that everything was fine, but the doctor wanted to talk to me in person right away so we could start a treatment plan right away. That's when I lost it and demanded they tell me what the hell was going on. She hesitated (I don't think they say stuff over the phone) and said that my labs came back positive for severe hypothyroidism. I wasn't even sure at that point what that really was so I was scared.. I called DH right away and he told me a tiny bit about it, what he knew, which was almost nothing, and he thought the receptionist really freaked me out for no reason. Now that I knew something was wrong, the next day couldn't come soon enough.

The appointment went pretty well. I mostly sat and listened in silence and asked a few questions at the end. My actual thyroid gland was so messed up that it registered no hormone production in my blood, and the gland in my brain in charge of stimulating the thyroid was at a number of 123.6. The normal range for that is 5-15.. So mine was extremely extremely high. Apparently it's the answer to why I've been feeling so awful lately. Almost a month ago exactly, I started taking thyroid replacement pills that I will have to take for the rest of my life. I started on a higher than normal dose to start because my levels are so high, and I have another blood test scheduled for July 5th to see how it's helping put me in the right range. It may take a few months to find the right dose of the hormone replacements I need, but once we achieve that balance I should start feeling much better. I asked specifically if it impacted my menstual cycles and fertility, and she said it absolutely did. Everything is thrown out of whack and doesn't work properly.

On a good note, the results for PCOS came back negative! She said the RE absolutely assumed and diagnosed me with the "variant" without doing the further testing he should have.. So when we do get the green light to TTC again, I won't have that complication to deal with. The even more exciting part, is that I can stop taking Metformin! It's been making me so sick because I don't need it! My blood glucose levels came back perfect! I can't believe I've been making myself feel awful all these months by taking these pills. I felt a flash of anger at the previous doctors who misdiagnosed me, but I let it go pretty quick. What is done is done, and I can get mad all I want, it still wouldn't change anything. I do feel very irked that if this had been diagnosed properly to begin with, we might have had success with a pregnancy by now, but I can't dwell on that for my own sanity's sake. Still.. Months and months lost.. 5 rounds of fertility treatments with all it's side effects, the stress, the hope and total devastation. There were many tears shed and many sleepless nights.. It's hard not to be upset, but I have to be positive. I have to.

She also said that since I was so severe, there is literally nothing I could have done to prevent the weight gain I've been dealing with over the last year. That made me feel somewhat better, but not really since I have to deal with the fact that I'm at my absolute heaviest currently and HATE IT. She said I could have literally starved myself to death and still gained weight. So messed up. Once we acheive that balance with the medication, the weight should start coming off. That was a releif to hear. I hope she is right.

After I learned that my thyroid gland was in my throat, something clicked in my head. For the past few years at least, I had been feeling a tightness in my neck that bothered me every few weeks. If I focused on it I could really feel it (like anything) but if I just pushed it out of my mind, it was okay. I'm not sure why it never entered my mind that it was something I should have checked out, it just felt like I had a little something stuck in my throat. It feels a lot like that feeling you get when you are trying to choke back tears. As embarassing as it is to admitt, I honestly thought it was because I was gaining so much weight my neck fat was just putting pressure on my throat. At the end of the appointment, I mentioned it, and she examined the area. She felt a bump there and scheduled an ultrasound to take a closer look.

That appointment was a few days later, and it went alright as well. It was rather uncomfortable, but doable. The tech spent quite a bit of time over the area where I felt something was off, but wouldn't really say anything.. I knew he couldn't, so I tried to be as still and relaxed as possible. He told me he took 65 pictures and that he was going to go talk to the radiologist to make sure that they had what they needed before I could leave. He was gone for about 15 minutes and came back in with a doctor. The doctor asked me several questions, like if I'd been feeling bad recently, what were my symptoms, had I been sick recently, and how long had this thyroid problem been going on. I told him I just found out 4 days ago and this was all new and I didn't really know what was going on. He asked me to lie back down so they could do the test over while he was watching. They took several measurements and listened to how the blood was flowing in my arteries. They had to switch ultrasound wands several times. I'm guessing for different kinds of measurements? At the end I said that since he was a doctor, could he tell me what was going on. He was still pretty vague and said that my doctor would discuss it with me further, but that they found no nodules, it was my actual thyroid gland that was swollen in the middle and on the right side. I asked why that was and he said there could be lots of reasons but that most likely it was because my TSH levels were in the 120s. He said I shouldn't worry and that my doctor will call me with the results and the next steps. A few days later I got the call with the official Hashimoto's Disease diagnosis.

So here we are now. I haven't been feeling too well lately, I don't feel a difference since I started taking the medication.. Well, I guess I take that back a little bit. The cramps have improved. I hardly feel them anymore. But everything else still feels the same. I can't wait to go get my levels measured on tuesday and see what needs to be done with the dosage. I can't wait to start feeling better.

I guess in a way I'm fortunate and should be thankful that this disease is very treatable and that in the long run, it will tie into our plans to have babies. I will have to be more closely monitered during a pregnancy, as there is a high risk of miscarriage if the hormone levels aren't balanced, but it's possible. Meanwhile, it's the waiting game again. Who knew that such a little gland could have such an impact on my health and fertility... Four days after I started the medication, I started spotting and it lasted for 15 days straight.. Needless to say, it's messing with my hormones already. I guess that's a good thing though? I wish I could fast forward time and be better already, but this journey is far from over I guess. I just need to focus on holding my head high and try not to let the finish line out of my sight. I can do this. I might be wobbly, but I'm learning to stand strong again.

It feels good to let this all out. Thank you, whoever you may be, for listening. I just wanted to add that if you try to leave a comment, it won't work.. =( My blog is broken and won't let anyone post comments. If you so desire, you can always reach me privately in a message on facebook.

I will leave here, at the end, a pasted description of Hashimoto's Disease if you would like to know more about it:

Hashimoto’s disease is a common cause of hypothyroidism (underactive thyroid). It is an autoimmune condition. Immune system cells attack the thyroid gland, causing inflammation and, in most cases, eventual destruction of the gland. This reduces the thyroid’s ability to make hormones.

The thyroid gland lies at the front of the throat, below the larynx (Adam’s apple). It is made up of two lobes that sit on either side of the trachea (windpipe). The thyroid gland makes chemicals called hormones that regulate many metabolic processes, including growth and the rate at which your body burns up energy. Hypothyroidism means the thyroid gland is sluggish or underactive.

Various conditions can cause hypothyroidism. One of the most common causes is Hashimoto’s disease, which is inflammation of the thyroid gland that reduces the secretion of thyroid hormones.

Hashimoto’s disease is considered to be an autoimmune disease. Immune system cells that normally defend the body against foreign invaders (such as disease-causing bacteria and viruses) attack the thyroid gland. About one in every 15 people is diagnosed with Hashimoto’s disease.

The condition is also called Hashimoto’s thyroiditis, chronic lymphocytic thyroiditis or autoimmune thyroiditis.

Hashimoto’s disease progresses very slowly over many years, so the symptoms may go unnoticed. The symptoms and signs vary depending on individual factors including the severity of the condition, but may include:

  • Unrelenting fatigue
  • Feeling the cold
  • Constipation
  • Swollen face
  • Dry, coarsened skin
  • Dry hair that is prone to breakage, hair loss
  • Voice changes, such as persistent hoarseness
  • Fluid retention (oedema)
  • Sudden weight gain that cannot be explained by dietary or lifestyle changes
  • High blood cholesterol
  • Stiff and tender joints, particularly in the hands, feet and knees
  • Cognitive changes, such as depression or forgetfulness
  • Enlargement of the thyroid gland (goitre) 
Hashimoto’s disease reduces production of thyroid hormones
The thyroid gland makes two main hormones – thyroxine (T4) and tri-iodothyronine (T3). Two brain structures, the pituitary gland and the hypothalamus, regulate the hormones released by the thyroid gland. The steps in the process are:
  • The chain of command begins at the hypothalamus, which prompts the pituitary gland to make a chemical called thyroid-stimulating hormone (TSH).
  • The pituitary gland checks the amount of T4 and T3 in the blood and releases TSH if the T4 and T3 levels need to be topped up.
  • The thyroid gland secretes T4 and T3 depending on the ‘order’ it receives from the pituitary gland. Generally speaking, the more TSH the thyroid receives, the more T4 and T3 it secretes.
  • The pituitary gland may order the thyroid gland to make T4 and T3 but, in the case of Hashimoto’s disease, the thyroid gland can’t deliver.
  • The immune system creates antibodies that attack thyroid tissue. The thyroid gland becomes inflamed (thyroiditis) and thyroid cells become permanently damaged, which hampers the thyroid’s ability to make T4 and T3.
  • In response, the pituitary gland secretes more thyroid-secreting hormone (TSH).
  • The thyroid may enlarge (goitre) as it attempts to obey the pituitary gland.
Common complications
Complications of untreated Hashimoto’s disease may include:
  • Goitre – the thyroid gland enlarges. In severe cases, the throat looks as if a tennis ball is lodged under the skin. Occasionally, a large goitre can interfere with breathing or swallowing.
  • Emotional problems – low thyroid levels can increase the risk of depression and libido problems, such as reduced sex drive. 
With treatment, the outlook for most people with Hashimoto’s disease is excellent. Treatment usually includes medication with the synthetic thyroid hormone (thyroxine). The doctor will recommend regular blood tests to monitor your thyroid hormone levels to ensure they are within the recommended range.

You will need to take the medication for life. Medication does not cure the condition, but helps maintain normal thyroid hormone levels. The symptoms will return if thyroid medication is stopped. Surgery may be required if the enlarged gland causes pressure symptoms.