Last week we found out that Aiyana has Hashimoto's Hypothyroiditis. This is an autoimmune disease in which the body's immune system attacks the thyroid gland and causes it to malfunction. The thyroid gland controls the body's metabolism, and to have it impaired is a very big deal.
The endocrinologist told us to put Ayiana on hormone pills right away (to replace the hormones that her thyroid is not producing) and we did.
Everyone wants to know how we found this out, what symptoms she had. She had no symptoms that we or her pediatrician could see. Except for one suddle thing. Ed and I being data nerds, have been collecting data on Sena and Aiyana's growth since they were born. We've been charting their height and weight information on the normal growth curves released by CDC. Basically these curves are a graph of height versus age. Sena and Aiyana have always been line on line with each other, and trending at around the 25% on the CDC charts. Over the past year, we noticed a slight deviation for Aiyana. She deviated from Sena's curve and also from the CDC curve, and basically flat lined for growth for about 8 months. Then she grew again, but was still down compared to Sena and the CDC curves. I mentioned this to her pediatrician, and he didn't think it was a big deal, but sent me for a blood test and to the endocrinologist just in case. The endocrinologist did not think much of it either at first, but when the blood test results came back, her thyroid hormone levels were abnormal, some of them by a lot, and that's when they prescribed hormone replacement.
It's been a very difficult week. I am upset about this for obvious reasons, but on top of it, I am very frustrated by dealing with the endocrinologist.
Hasimoto's is an autoimmune disease that attacks the thyroid. I understand that we need to replace the thyroid hormones with medication, and I'm ok with that, but my question as to how are we going to address the autoimmune issue is ignored completely by the doctor. It's the classic conventional medicine approach of treating the symptoms not the cause. When I asked the doctor if we should change anything about our diet, lifestyle, or do anything else to address the immune problem, she said just eat a balanced diet, without any further guidance. Also, I asked her how will we know if this autoimmune condition causes problems in other areas of her body, and she said if we see other problems we'll address them, which to me is insane. Why not address it now, before more damage is done? Overall, I just get the impression that she thinks I'm a pain in the ass for asking these questions which she does not know how to answer, instead of just giving Aiyana her pill and going home.
So I've been doing my own research on Hasimoto's, reading and talking to different people who are either experiencing it themselves or know about it. I am also talking to my Naturopathic doctor, who seems much more supportive and knowledgeable about addressing the immune issue. He agreed that Aiyana should take the thyroid hormone right now, and he also prescribed Vitamin D. and a gluten free diet.
My reading and research so far supports the Naturopath's recommendations. Gluten seems to be a strong autoimmune trigger in people with Hashimoto's, so we got off gluten right away. It was one of the few things in our diet that I did not feel great about, so I don't feel too bad about giving it up. Aiyana's missing it a little, but overall she's being really good about it. We also have her taking vitamin D and cod liver oil, and next week I am meeting with the Naturopath again to see how else we can support her.
The endocrine doctor told me flat out that Aiyana would have to be on hormone replacement the rest of her life. But my reading indicates that if you figure out what's flaring out the immune system, and get that under control, you can live with Hashimoto's without needing to take any medication. So for now, we are giving her the hormones prescribed by the doctor, but by no means am I going to accept that this is going to be a life long thing, before I've done everything in my power to address the immune system imbalance and take care of it.
From what I've learned so far, it seems like the immune system can be triggered by diet or lifestyle factors, such as environmental toxins (molds, heavy metals), and other stressors. There can be a genetic component to it as well, which may or may not be at play with Aiyana, but even that manifests supposedly when the immune system is triggered by something else.
What's really hard about this is that there is so much information out there, and I feel that we are basically on our own trying to sift through it all. There are so many doctors, and alternative practitioners, so many books, websites and so on, each with their own slant on this issue, and I am sure some of it is legitimate info, and some is not. I am not an expert in Hasimoto's but it feels like I will have to become one if I want to help Aiyana. I wish I could go to the endocrinologist and trust what they tell me, but so far it seems that they are just not willing to look at the whole picture, and without that how can you treat accurately? I plan to go see another endocrinologist, maybe I'll have better luck.
Aiyana is doing well, as I said, she has practically no symptoms. Her thyroid is a little enlarged, but if you didn't know to look for it, you would not notice it. Her energy level and everyhting else are totally normal. She's not bothered by having to take the thyroid pill, or the supplements we have her on. She was also very cooperative when having blood drawn.
I've read Dr.Kharrazian's book on Hashimoto's disease, and ordered two more by different authors.
This has taken all my attention since we found out about it, but I've been able to plant some onions in between things. Thank goodness for plants and animals, for trees and snow outside. I'd go crazy living only in the world of people.
Peace