Hi Folks,
My withdrawal journal begins with a rather curious diagnosis. I am a 51 year old female, 3.5 years post thyroid cancer diagnosis and 17 years post Bi-Polar 2 diagnosis. Between ages 33 and 48, I was treated for Bi-Polar Type 2 disorder and Fibromyalgia. I had mood swings, carbohydrate cravings, extreme muscle pain, insomnia and chronic daytime fatigue. I was sent to a psychiatrist because everyone knows, a menstruating woman basically suffers from hysteria. (she types with gritted teeth and white knuckled fingers)! I was physically hurting so much and the mood swings were incredible so, I gladly swallowed whatever the psychiatrist handed me and he felt the need to hand me alot over the next ten years. I gulped down, Depakote, Doxepin, Klonopin, Effexor, Wellbutrin, Neuronitin, Celexa, Paxil and Provigil....not all at once but you guys know the drill. "Try this for six weeks, Not working?, let's add a smidge of that, still not good?, get rid of that and take this instead"! Up and down on the medication, merry go round I went, for years. At the same time, I saw a rheumatologist that thought I may have been developing an autoimmune disorder. That would explain alot as far as the body pain and joint problems went. He also said, it might account for some of the psychiatric symptoms but my blood test was inconclusive so he labeled me with fibromyalgia and said, "Well, it's painful but at least it won't kill you". I thought about that as I cried all the way home. I wondered how I was going to cook supper that night for my 4 kids and husband. I basically had nothing seriously wrong with me but I felt like crap all the time. My head pounded, I could sleep all day but not at night, I was super depressed and my brain felt like it was incased in mud. I went back to the psychiatrist and questioned my diagnosis of Bi-Polar disorder. He patted me on the hand and said that most people don't want to accept a diagnosis of a mental illness. He encouraged me to keep taking the medication and see if it helps over time. I took those meds for over 13 years. The only good thing they ever did for me was put me in a chemical coma at the end of the day. I slept through fire alarms and thunder storms. I slept like a dead woman and waking up was brutal. I put on thirty pounds in the first two years. Still I visited the rheumatologist yearly and he tested my blood religiously for autoimmune disease. By the tenth year, I looked at this rheumatologist and point blank asked him if he thought I had a mental illness.
No doctor wants to step on another doctors diagnosis. Finally after much throat clearing and foot shuffeling he looked up at me and said, "look, you have high ANA antibodies which do not conclusively tell me that you have Lupus but it indicates there is something brewing in your system that has not clearly defined itself yet". "So, I don't have Bi-Polar Disorder"? I asked again. "I'm not sure, I'm not a psychiatrist and it is possible to have more than one condition", he said. I always seemed to cry on the way home from the rheumatologists appointments and not the psychiatrists appointments. I think the physical symptoms and pain were ones I wanted the most help with and it never came. Not until 2007, I had been on psych meds for at least 14 years and my panic attacks were increasing. I was not willing to take more meds and I had even asked if we could start reducing some. The psychiatrist did not think that was wise. I was fed up with swallowing pills and still feeling crappy. The swallowing part was actually becoming a problem. I began to choke on pills and food in general. When I lay in bed at night, I had the sensation that someone was squeezing me around the neck.
I brought up these new symptoms to my primary care doctor. She promptly referred me back to my psychiatrist. I was told that the panic disorder was getting worse and that we needed to make yet another med change. I broke down in the psychiatrists office and refused to take more meds. I went back to my primary and asked her to investigate my symptoms as a physical illness and not a mental one. These were new symptoms, separate from any previous diagnoses. She put her arm around me and said, "do you have any new stresses going on in your life"! I jumped off her table and almost shouted, "yes, I feel like shit and no one will help me, everyone tells me it's all in my friggin' head, either you are going to check this out or I will go to another doctor"! I am pretty sure I looked psychotic because I felt like a basket case! She told me she would order a thyroid function test and a barium swallow. I went for the blood work and a scan of my neck. Imagine our collective surprise when a solid thyroid nodule was found in my neck.
I had a biopsy of the nodule by an Ear Nose and Throat gal and she confirmed abnormal tissue. I had a total thyroidectomy in January 2008. The nodule was positive for Papillary Carcinoma. The treatment is to drink radioactive iodine. Which I did in May, 2008. Because my immune system was brewing an autoimmune issue, my body did not take up the radioactive iodine and the cancer remained. In October of 2008, I had a second surgery to remove 38 lymph nodes along the carotid artery in my neck. I have not had another panic attack since. I hooked up with a new psychiatrist. This guy reviewed the years of treatment and said, "I'm not convinced you have bi-polar disorder, the thyroid is an important gland and when it is whacked out it throws your whole system off". That day I did cry after that psych eval because I felt like I had returned to Kansas and things were making sense around me again. A year after cancer treatment I revisited my rheumatologist and he ran the customary blood work. It came back with other odd antibodies and he officially diagnosed me with Undefined Connective Tissue Disease and I started on Plaquenil. It is a med that is usually used for lupus and it has helped me quite a bit.
My new psychiatrist helped me wean off the Depakote during the first year after cancer. The second year we tackled the doxepin wean. I am only 9 months passed my last dose of 10 mgs of doxepin and I still get head zaps. I do have difficulty sleeping but I was thrown into menopause after the cancer treatment and I have terrible hot flashes at night. I am still on .5 mgs of clonazapam at night and that is the next drug that will be tapered. My psychiatrist is waiting for me to even out and get on firm footing because the doxepin withdrawal has been hell.
My cancer doc told me that thyroid cancer takes a long time to grow into something we can see and feel. It can be hanging around for years before it causes any throat sensations. Before that though, it can cause rapid heart beats, difficultly sleeping and mood swings if it throws your hormones off. It is very difficult to distinguish between a psychiatric problem and a hormone imbalance. I did have my thyroid levels checked on and off and the TSH was always in the normal range. It was one of those hit or miss things. I always missed.
While I am grateful for an accurate diagnosis after all these years, I'm not too thrilled with the amount of meds I dumped into my body needlessly. Coming back from that is hard. I do get depression now and then because I have these withdrawal symptoms that suck and I know I still have to tackle the clonazapam in the future. Because of the autoimmune problem, I can't get the normal cancer treatment in the future. Once a year I have my neck scanned and if they find any yucky lymph nodes they will have to be surgically removed. I do have 2 tiny positive nodes that we keep an eye on. I take Levoxyl to replace the thyroid hormone that I no longer have and it is at a high dose to keep cancer from growing. I instantly lost the 30 pounds once I got off the Depakote and little by little the mud is oozing out of my ears and freeing my brain once again!