Join Date: Apr 2011
Location: Alachua, Florida, USA
Re: Let's post our stories here. I will start with mine:
Wow! I canít believe how many people are having such a hard time with this, and that they still understand so little about the thyroid. I wish everyone the best, and hopes of having answers and feeling better quickly.
Before my story began, I thought I was a pretty healthy 33 year old woman. I just had some sensitive skin, severe lactose intolerance, the occasional migraine (maybe 1 a year), Endometriosis, Hypoglycemia (controlled very well with diet), and IBS (only acted up when I drank a few alcoholic beverages, or got really stressed). I also had a lot of sensitivities to medications, fragrances, and chemicals. It was overall, not too bad and very livable.
My story begins July 26, 2010. We were currently finishing a remodel on our home, and having a garage sale that day to get rid of some of our old things. I began feeling strange during the sale. By the time we had cleaned everything up, I felt even stranger. I was weak, feeling cold and sweaty, I was having trouble thinking, and I felt like I was going to pass out. Even though I was either in the garage with a fan or in the house with AC, and drinking a lot of waterÖI thought maybe I was having heat exhaustion. I was getting worse, so we decided to go to the ER. At this point I was also having a terrible migraine and feeling nausea, so my parents stayed at the house with my son while my husband drove me. I began throwing up in the wait room, and it didnít seem to help my migraine any (like it would in the past with migraines). They checked my BP (low, but okay), they checked my temp (fine), they checked my pulse (85, high for me), and they did and EKG (which was fine). When I saw the Doctor, he said he wanted to run a bunch of tests. He said he was concerned about an aneurism, and meningitis. He also wanted to give me a drug for the headache and nausea. I told them I was really sensitive to most drugs, and would prefer not to. He convinced me, and they began putting Reglan into my IV. With about 3 drops of it, my pulse raced from 72 Ė 120 and I had a panic attack! Later, the Doctor came back to say that the CT of my brain didnít show an aneurism, and all the other tests were fine. He also said he wasnít convinced this was heat exhaustion (since I showed to be well hydrated), and felt like something was really wrong with meÖthen he sent me home! That was a Saturday, and he asked me to follow-up with my GP Doctor on Monday.
Well, my GP Doctor wasnít in on Monday, so by the time I saw her on Tuesday I had a list of new symptoms that were happening since Saturday: Headaches, neck/lower skull pain, anxiety, panic attacks, cold sweats, fatigue, brain fog, body pains, and much more. She had me go get more blood work, wanted me to start an anti-depressant, and sent me to see a physical therapist for my neck/lower skull pain. She thought that maybe I hurt myself during the garage sale, and that the experience at the ER may have started some anxiety/panic problems for me (which I have never had in my life). The blood work was a just-in-case. The antidepressants made me way worse (suicidal thoughts), so I stopped them (Doctor completely agreed). She asked if I would be willing to try one other kind, so I did. It did the same thing. I have always been very sensitive to medications. Iím one of those people that get all the side effects, and even invent new ones. We decided to try a low does of Diazepam, and to use it as needed. It worked well, even helped with the sleep problems that I now had too. The physical therapy seemed to be helping my neck (sometimes), and all my blood work came back normal (including a TSH of 1.66).
Eventually, I stopped the physical therapy, after it seemed that my pain would just come and go anyway. It has now been a few months and I still had all the same symptoms, plus some new ones. I was now losing lots of weight (even eating very well), losing lots of hair, getting a petechiae rash (mostly on my legs), having terrible heat intolerance, but sometimes freezing too, weak, muscle/joint pains, muscle cramps, body pains, reflux, indigestion, heartburn, using the bathroom a lot, very soft stools, dry skin (seems like I canít lotion enough), blurred vision, dizziness/vertigo and many more. My Doctor sends me to get an MRI of my neck area, and to see some specialist. The MRI came back normal, just some slight protrusion at C5 and C6. The Rheumatologist diagnosed me with Fibromyalgia. The Neurologist diagnosed me with tension headaches, wanted me back on antidepressants (NO WAY), and confirmed the Fibro. The Dermatologist said she thought my rash was from Ibuprofen, and to stop taking. Then she also diagnosed me with psoriasis and eczema. The gastroenterologist thought it was my getting worse, and maybe my gallbladder. I had a HIDA scan done, and it showed my gallbladder low functioning (45% functional). It was never a problem before all of this. He said not to eat fat!
My GP Doctor didnít really believe the Fibro part. It doesnít explain why I was losing weight. She wasnít sure what to do at this point. They had ruled out so many things, like: MS, Lupus, and thyroid (so she thought). She said lets give it about another month. My anxiety was pretty much under control at this point (so we thought). She said that time may show which symptoms stand out the most, so she will know where to look next. I think I had her completely baffled. The poor thing was trying so hard.
In the meantime, I saw a Chiropractor, Nutritionist, and an Ophthalmologist. The chiropractor (using applied kinesiology) determined I had a soy intolerance. So, I cut out all soy. It did make a lot of things better, but not gone. We also worked on adjustments that were supposed to help with Fibro. The nutritionist said that I was bringing in 2300 Ė 3000 calories a day, but couldnít understand why I was still losing weight. I started off at 143lbs, and Iím now 116lbs (64in tall). She thought it may be due to my low functioning gallbladder, and wanted me to go on a high protein Ė low fat diet. Then my gall bladder would allow me to get the calories from the food since it wasnít so hard to try and process the fat. It didnít seem to make any difference. At last weigh in I had lost another pound! The Ophthalmologist said my eyes were fine, so he could see no reason for my blurred vision.
I saw my GP Doctor again. I was really upset, and told her I needed to get better. My husband needed to miss less work, and I wanted to be able to take care of my 3 year old son better. She sent me for more blood work. She and I both feel like my symptoms scream thyroid problems. The TSH (2.35 this time), T3, and T4 all came back in range. She said she could send me to see an Endocrinologist anyway, so I did.
The Endo says that maybe my TSH normal range before all this was .3 (example), and that my symptoms are because I am out of what ďmy bodyĒ considers normal. She sent to have it tested again, as well as testing for antibodies and my cortisol levels. I think she is also testing my calcium levels. Iím now waiting on the results, and I have a follow-up appointment. She said that there is a problem though. If I test with antibodies (Hashiís), she wouldnít treat me now. She said it would make the weight thing worse, and that losing weight with Hypo is very rare. She would just watch my numbers, and treat as things change.
My GP Doctor has also referred me to the Mayo clinic at this point, and I have an appt with them on May 26th.
Sorry for such a long story. I was hoping to either help someone with all this information (or at least help them feel not so alone and crazy), or maybe someone has some information that may help me. Good luck to everyone!