I am so happy to share a success story now with you. I started noticing that something wasn’t right probably 5 years ago, when I was having chronic sinus infections. I had gotten them in the past, but they would clear up quickly. Now on top of every cold (which I frequently had), I would get a sinus infection. I would try to clear it up and then I would get horrible bronchitis. Honestly, it got to where I felt like I was always sick. I had three very young children though, and my youngest was just a year old, so I figured they were just passing bugs on to me! When life became almost unbearable from the constant headaches I had- I went to an ENT. I did have an infection that had not been cleared up by all the antibiotics, and that showed up on a CT scan. I had sinus surgery when my infection proved to be resistant to even the strongest antibiotics. The sinus surgery did help. Rather than just having a constant sinus infection, I seemed to only get 1 to 2 a year, and the headaches were greatly reduced.
Not too long after the surgery (about 8 mths), I was trying to do my regular workouts, and noticed my heart flip flopping. My physician brother-in-law said it’s probably nothing, and if I had taken any cold medicine-like Sudafed, that could do it. Since I still regularly got colds and could have taken some sort of medicine…I decided to just ignore it, and figured it would go away. But it came back. It’s very scary when you constantly feel like your heart is skipping a beat, and I started having chest pain, and shortness of breath. Then my left hand starting feeling really numb and tingly, radiating up my arm. I thought for sure I was going to die in my early 30’s of a heart attack.
I went to my GP, and after doing an EKG and a thyroid blood test that came back normal, she referred me to a cardiologist. He put me on a holter monitor, saying I had supraventricular tachycardia, and that it wasn’t life threatening. I had a stress tests, ultrasounds, ekg’s done and he said he just wanted to put me on some Beta Blockers because my pulse was a little too high at 114. I have always had a higher pulse, usually in the 90’s, and even when I was younger people were a little surprised by that. On the monitor, I had to record each and every time I felt an irregular heart beat. They increased my beta blockers and since the shortness of breath was getting so bad, while I was driving sometimes, I would suddenly feel like I was going to die. I was really scared and it was like having panic attacks. My cardiologist also added Ativan (an anti-anxiety drug) to my beta blockers. For a while that seemed to work, but then after a few weeks the palpitations would start again. I went back and he increased the Ativan. They kept coming back even still. My cardiologist thought I might need an EP study and sent me to an Electrophysiologist at a prominent group in Atlanta (Emory Doctors).
Now mind you, both the Cardiologist and Electrophysiologist had asked if I had a thyroid blood test done and I told them yes, and that the GP who referred me to them, told me it was normal. I wish I would have had some idea about the importance of that blood test and how quickly the results can vary by just a week, or two. This EP Doc said irregular heartbeats and arrhythmias are nothing to worry about. I told him about the shortness of breath and pain, and how sometimes it would get so severe that I really had difficulties driving, and with three little kids, that scared me. He said sometimes people go through their whole lives with these things and they just learn to deal with it. Of course if it gets intolerable there’s Cardiac Ablation for some people with more severe cases. He gave me Xanax and he said he didn’t think it was Panic Disorder (I was concerned because my father had been diagnosed with PD, but he had told me he never had the horrible palpitations and all I was having.).
Came back to the EP Doc for a check up and the Xanax was helping, but I still had the palpitations. He said I should go to a Psychiatrist. I was pissed when I left that office because I realized my whole experience with that Doctor had just been a waste of my time, and money. It was insulting to be brushed off as just an imaginary problem. I knew in my heart that there was something more to this than just Panic Disorder.
So I went to the psychiatrist. She asked if I had already had a Thyroid workup , and I once again explained that only my GP had done one and that the results had come back normal. I’m shocked now that no one asked for a follow up blood test! After hearing my symptoms she said it sounded like Panic Disorder and kept me on the Xanax, but added Paxil. I really wasn’t happy to have to yet another drug, but by this time I was so miserable and had gotten to the point where I didn’t want to leave my house, that I just cried and was happy to get some sort of diagnosis. It seemed that it helped to a degree with the panic attacks. The palpitations & shortness of breath never fully went away though. After a couple of visits with her I had gotten off of the Xanax and was happy about that.
I had at this point put on at least 10 extra lbs. I had always had a terrific metabolism, thin build, and tons of energy, until all this started. I soon realized that this wasn’t solving my problem. I just stopped seeing her and tried to start doing some research on my own. Over the next 8 months everything went extremely downhill. I was exhausted all the time, I was puffy everywhere, my memory was horrible and I always felt overwhelmed. I attributed some of it to moving into a new home and all the activities and schedules of the kids. I just couldn’t keep up with stuff though. I forgot about my own daugher’s teacher conference. I couldn’t remember anything! Finally, I woke up one night and realized that I could not move my left arm at all. It felt as if it were a dead weight and that it was paralyzed. I literally had to pick my left arm up and lower it so it was hanging off the bed straight down. It was like a limb that had fallen asleep, but exaggerated 100x that feeling. My whole body had gotten used to just always aching and feeling sore. Finally the feeling came back to that arm, but I knew then that I had to get an answer. The next morning my other arm- right arm was incredibly stiff and my wrist hurt so bad to move it to the point that my hand was greatly affected, and I couldn’t use my hand. I have a friend who is a nurse and she referred me to her GP.
I went to this GP and explained my whole history, being on Paxil because all my other symptoms had ultimately been contributed to Panic Disorder. But also that I had never felt it was a correct diagnosis and still had lingering palpitations, constant high pulse, etc. I told her how I had no memory basically, was always hot though, and not cold. I would get hot sweats at night and wake up soaked, and the constant fatigue, and body aches, the numbness and told her about the evening before, and now the hand & wrist that were very painful. She immediately gave me some sort of muscle relaxer and said I really think we need to do another Thyroid test. She scheduled me for a follow up in two weeks.
By this time I was getting to where I felt like I could follow asleep possibly even while driving with my kids in the car. I was constantly nodding off and napping during the day. I felt as if I was completely letting my kids and family down. I was really to the point of thinking I couldn’t really function as a parent. I was depressed, and I wanted an answer. After 2 weeks my bloodtest came back normal she said it was on the higher end of 5, and that she was thinking it really was my Thyroid and was surprised it wasn’t higher. She was confident enough to want another test to confirm that it wasn’t a Thyroid problem. I had to wait another two weeks.
By this time it was just difficult having to get up everyday and try to make it through the daily routine. I would cry on a regular basis out of desperation. I would pray constantly for correct diagnosis, not just for myself, but for my kid’s sake. On the day I was to go back for the results I had taken a shower and I had my 4 year old son home with me. I realized I had about a 1/2 hr before we had to leave so I sat down on the sofa. I quickly just nodded off with no intention of nodding off! I awoke and realized it was 5 minutes till my appointment. I raced with my son to the appt. and then I realized when I got to where the Doctor buildings are, that I had completely forgotten which building I had gone in the prior two times. I had to call and ask my nurse friend. By the time I got in there I was 15 minutes late. They said they didn’t think the Doctor would see me. I just said I want you to check and that they don’t understand I have to get my results. They weren’t understanding at all, and finally I was in tears and I said there’s something wrong with me, I fall asleep without notice, that’s why I was late and then I have no memory…that’s why I forgot where your office was…and that’s why I need my results to tell me what’s wrong with me. I was in tears at this point. They then realize that they need to tell the Doctor this.
As I turn to sit down I see a girl who says my name-“Trish, is that you?” I look at her and I know I should know her name, and I was so sad and I just said “I don’t remember your name, I’m so sorry.” She reminded me. I had gone to church with this girl and had been friends, and her name completely escaped me. I was a complete mess. The Doctor called me back and could tell how upset I was. She said my results did come back abnormal this time. My TSH was 6.2. She said she wanted to start me on Synthroid. I asked to be referred to a good endocrinologists at that time…thinking that would be the smart thing to do!
I went to the Endocrinologist a week later. I told him of the severity and wide range of my symptoms. He really downplayed everything. I told him of the list of Doctors I had seen. He said I was probably mildly Hypothyroid, but did some more blood work. Mind you this blood was taken only a week after my results showing a TSH of 6.2. My bloodwork came back with a TSH of 9.5. He just said it must have progressed and that treatment with 50 mcg Synthroid was necessary. He also asked me to do a 24 hour urine, which I did.
After a month I had not gotten all the results, nor the results from the 24 hour urine test. Turns out they lost my urine. I never went back. I went back to my GP after doing some research and realizing I was far from being back to normal. The synthroid helped some, but no where near enough. She agreed to increase my Synthroid to 75mcg, but when I asked about adding T3 she balked. Said that was not prescribed for Thyroid problems, and that it was unconventional etc. I searched online for the top Thyroid Doctors. At this point my memory still stunk, fatigue was pervasive, but sleeping at night was difficult,had no libido, and a great deal of anxiety, and some depression. I was happy to have a diagnosis, but now I wanted a working treatment.
I found Dr. Milton. He’s a GP, but specializes in Thyroid Disorders. He gave me a saliva test for adrenal stress index test. He had all kinds of blood work tests. I had a cortisol burden of 85 (should be btwn.23-42). I was hypoglycemic, and a bit anemic, and I had depressed SIgA. He gave me a course of action at that time to stay on Synthroid, but to add DSF, Seriphos (2 in am/2 in pm), Nana B Complex, DHEA & 2 Iodoral a day. Soon after I was noticing some major improvements. We stayed with this for sometime.
However, at some point I started experiencing major stomach cramps that became increasingly more intense. My husband travels often, and I started being woken up in the middle of the night with unbelievable stomach cramps & pains that radiated to my back. It was difficult to move. One night it was so severe I made it to my bathroom floor and just laid curled up shaking in pain, sweating profusely and wondering if it would ever stop. It did, and I can say the only thing I can liken that pain to- was my intense back labor with one of my sons. The pain started again one afternoon and got so severe that I started to vomit, and, sweat again, shake, just radiating pain. My husband had just left for Europe. I called my nurse friend who helped me spread my kids out with different friends in a matter of minutes and she drove me to the hospital. I had a plastic bag to throw up in and I was a mess.
By the time we got to the hospital I couldn’t walk. My hands had become completely deformed, and I had lost feeling in my mouth, and it was more difficult to talk. The nurse there said it was from hyperventilating. The pain was once again unbelievable, and I was begging for pain killer. My nurse friend told me at one point one of the nurses working said she didn’t think I was really in pain (of course she didn’t tell me that till weeks later). I just couldn’t believe it. Something is really wrong with our medical professionals when they don’t want to believe us!!! I had never been in an ER in my entire life! I was admitted and my husband flew back from Europe for me to simply have every test imaginable run, but only to be told I had an elevated white blood cell count. I think it had been 17,000 and then came down to 12,000. They just intravenously gave me Levaquin an antibiotic. I still had terrible bloating and a pain that would come and go and was seeing a Gastroenterologist for that. He was a complete fruitcake. He ended up trying to diagnose me with Irritable Bowel Syndrome!!!
I went back to my GP, who didn’t understand what had caused it either, although he did pick up on some labwork the Gastro had ordered for me, but never went over with me, that it showed my porphyrias levels higher than range, he was the only one who had said that can lead to a rare disease that causes the exact type of pain I was having. Thankfully, whatever caused that, has not come back. It has been exactly a year since that experience, and I pray I never experience that again. I have stuck with the GP-Dr. Milton because he is the only Doctor who really tries to find an answer for me, and believes me when I tell him my symptoms, and feelings.
To sum up I had gotten off Paxil by the time I went to Dr. Milton and was just on the Synthroid. After doing the supplements for sometime and still having problems with memory, libido, anxiety, fatigue, and some depression I asked Dr. Milton how can I get back to normal. He recommended trying some T3 at this point. I was on 75 mcg, and 5mg of Cytomel. I immediately noticed improvement with the addition of the T3, but it just didn’t last long enough. After getting on this website and writing somewhere a little bit about my experience, and that I was feeling better, and now had hope that I could get completely better…Janie responded and recommended that I ask my Doc to put me on Armour. I did just that he readily agreed. I went from 2 grains of 60mg to 3 grains now and I have to tell you I feel like I’m just about 100% back. Now it’s only been 3 months now of being on Armour, and I haven’t dropped lbs like I’ve read some other have, but I feel good! I have a memory, I’m not freezing anymore (realized the Paxil was what made me hot, and after I went off, I got the freezing symptom of being hypo), I’m not always feeling in a bit of a rut, and I have a libido-not completely back to normal, but…at least there’s something.
Most importantly I am able to be here 100% for my kids and my family now, and I’m happy! I have my life back, and I can tell you there were many times over the past few years where I really wondered if I would ever get well. I believe that I am ready to get back into an exercise program now and knock off these 15-20lbs I’ve accumulated through this disease.
I want to thank Janie so much for just saying to me “tell your Doc to put you on Armour”!!! Just that little nudge gave me the courage to ask my Doc to let me try that. I have seen such a huge improvement since switching from Synthroid to Armour and I can’t thank you enough, or put into words how positively this change has affected my life, and therefore my whole family’s life! Just want other thyroid sufferers out there to know that there is hope, but that you have to be proactive, and actively involved your diagnosis, as well as your treatment. Sorry it’s so long!