Trish’s Story

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!