I am a 33 year old mother of 5 young children residing in North Central Texas. I was a healthy child born in 1983. I had quite a bit of stress and trauma in my childhood. I had a few injuries that required stitches and a parasitic infection during these years but I was otherwise healthy. I played outside and ate garden veggies while playing in creeks. I was vaccinated as a child as well. My grandparents smoked in the house and cars so I frequently had ear infections. I have a family history of cancer, epilepsy, Hashimotos’, and heart issues. I had my first child in 2005 a daughter born via c-section at 38 weeks for failure to progress, she had breathing issues immediately upon birth and spent 8 days in the NICU. This was quite a traumatic experience for my husband and I. Our second child was born in 2008, a son, also born via c-section at 38 weeks. He was large for gestational age with low blood sugar. It should be noted that I gained weight very easily when pregnant and had in all 5 of my pregnancies I failed the one hour glucose test but went on to pass the 3 hour one. I gained approximately 80-100lbs each pregnancy and lost most of it before getting pregnant again. My normal adult weight was 150-160lbs at 5’6 and I would deliver each of my children weighing 230-250lbs.
Our third child,a boy, was born in 2010 at 39 weeks via c-section following a traumatic pregnancy. I had placenta previa and frequent bleeding episodes leading up to bed rest until delivery. In 2011 I gave birth to another boy at 36 weeks via emergency c-section following placenta previa with a partial placental abruption. Due to the nature of his delivery I was unable to get my tubes tied during this surgery. In 2011 I underwent a laproscopic tubal ligation.
During these years being pregnant and birthing these four children I did not develop any conditions, and I myself was healthy and passed all prenatal labs. I did have low iron but took my prenatal vitamins as prescribed. During these years I did have 3 miscarriages, 2 of which were very early and 1 that was late first trimester and did require a D&C to stop the hemmrogring. I have always been a healthy eater as well although during pregnancies I did have a tendency to eat some junk due to cravings.
About 8 months after this I started having severe digestive issues including bloating, gas, and lots of diarrhea. I would stop multiples times going anywhere, I developed massive anxiety over public situations and would refuse to go anywhere while my stomach was acting up. I soon began to have issues all of the time because I would work my stomach up mentally over being stressed about traveling with others and bathroom locations. I had testing done for celiac and it was negative. I was then told I had IBS and that it was a lifelong management condition. I removed gluten from my diet and felt better immediately.
In 2013 I found out that my tubal ligation 2 years prior had failed and I was now pregnant with baby #5. I had a normal pregnancy with him and a easy c-section delivery. At this time my tubal was repeated this time with the Irvine procedure.
Six months after his birth I started having bad heart palpitations and felt daily fatigue. I went to the cardiologist who told me I had a heart murmur and that I also had a high TSH and referred me to an endocrinologist. I was then told I had hypothyroidism and I was given 50mg of levothyroxin. This medication did nothing for me and my symptoms persisted and new ones came along such as hair loss.
I found a doctor who was willing to give me NDT and that is what I went on. I felt much better quickly but soon I was upping the dose, and this process would repeat even to this day it is still rising, I am now at 130mg. My hypothyroidism has now turned into hashimotos as I have now developed antibodies. I also now have a positive ANA and a high sedimentation rate.
In 2015 I had encephalitis twice. It came after bouts of what seemed like the flu. I was told I had viral induced encephalitis and was given steroids. The second time it happened approximately 6 months after the first time I was tested for EBV and CMV. I was high positive EBV and negative CMV. I was told the EBV was a latent infection and not current and it was not what was causing the encephalitis.
Since 2015 I have been steadily going downhill. I now feel bad 90 percent of the time. It is a chronic achy and general unwell feeling mixed with hashimotos’ symptoms and lupus symptoms. I was tested for lupus and those tests were negative, except my ANA and sed rate were abnormal but the symptoms I have tightly align with lupus symptoms. I have a constant sore throat and I have developed periodontal disease. I have vitamin deficiencies and episodes where I will loose partial vision in left eye with lots of fuzziness and then I will get a headache on the right side of my head. I just started seeing a floater in my vision as well, it resembles something you’d view under a microscope and seems worm like.
My symptoms are vast and frustrating. I was recently told my symptoms are fibromyalgia. I just don’t know anymore. Feeling bad all the time really makes you depressed and it is hard to keep on. Autoimmune disease is so much more than the name. Sure I clinically have hashimotos but it is clear that autoimmune is much more complex than this. I have multiple systems in my body involved and I know others have similar struggles.
I pray for more autoimmune research. Thank you for taking the time to read my story!