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Old 01-13-2012, 08:43 PM   #1
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Skymama10 HB User
Autoimmune? Can't get a DX

Hello- I would appreciate any suggestions/help. I am a 32 yo female who has been living in agony for the past 7 months. Here is my story...

Nov 2010-elective c-section. Delivery of healthy baby girl. No complications with delivery. Only complication during pregnancy was excessive nausea and vomiting.

Dec 2010-May 2011--Felt great! Happy and healing well. Back to pre-pregnancy weight. Exercising daily.

June 2011-The nightmare begins...Started getting nauseous everyday, vomiting, total loss of appetite. U/S of abdomen=neg, Upper endoscopy=neg. Slightly elevated lipase (have had this on and off for years and underwent numerous MRI and CT of pancreas which were all negative).

July 2011-Started crying everyday, not eating, anxious, stomach pain. Felt like I was losing my mind. Intense feeling that I was going to die. Admitted to hospital for 3 days due to malnutrition. Lost 10 pounds in a month. My internist thought I was acting hyperthyroid. Thyroid level came back at 5. CT scan of abdomen=negative except some kidney cy. Thyroid labs drawn again came back at .9.

August 2011-nausea lets up, no more vomiting. Chronic constipation. Extremely anxious, tons of energy. Insomnia. Eyes started feeling extremely dry. Vision started becoming blurry. Eyes sensitive to light. Muscles started twitching all day. Hands and feet tingling. Ringing in ears. List another 10 pounds. Bloodwork all within normal range except for total protein was low as well as albumin and lipase slightly elevated. Saw Neurologist. Emg of upper extremities =negative. Neuro said prob autoimmune or endocrine. Muscles started hurting all over. Couldn't open jars or write with a pen because my hands tremored so bad.

September 2011-October 2011-- Started on Zoloft for anxiety/depression (saved my life). Muscles started to not tingle anymore but became extremely stiff and started burning. Headaches behind eyes. Eye pain. Shaky legs. Could hardly walk down the driveway. Could hardly care for my baby. Lupus labs= neg, Sjogrens labs=neg. Endocrinologist feels I have Graves. Iodine scan shows early graves or early Hasimoto's. Thyroid Labs still normal. Not treated for Graves due to normal labs. Referred to Rheumy.

Nov 2011-present-terrible pain in joints like feet, knees, hands, neck, hips. Muscles are weak and shaky. Burning pain. Joint Popping all over body. Cannot exercise. Spleen pain, stomach pain. Labs show hemoglobin= 11.7(L), MCV =15 (L), leukocytes= slightly low, Ferritin=5 (really Low). Lipase still elevated. Tongue feels swollen on and off. Lymph nodes in neck feel swollen on and off. Racing heart on and off. Short of breath on and off. Lips extremely dry. Craving chalk, sand, gravel ( have never eaten it but I want to). ESR=20 borderline high. Lyme labs= negative. MRI of brain and neck= cervical disc bulges not impinging spinal cord. Eyes are puffy. Skin is pale. All cancer markers negative. Bone crushing fatigue with no energy. Lightheadedness.

Thanks for bearing with me. I feel 95 and I'm extremely scared no one will diagnose me. I have a 13 month old who I need to be able to raise. My husband and family think I'm a hypochondriac. I assure I am not. No one would choose to feel this way. I need some hope.

One last weird Sx...I have hyper reflexes in my knees and I get startled very easily. This comes and goes.

Any ideas? Thanks again!!!


 
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Old 01-14-2012, 11:11 AM   #2
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lala52 HB Userlala52 HB Userlala52 HB Userlala52 HB User
Re: Autoimmune? Can't get a DX

Sky:
WOW. You really got hit. I have lots of similar symptoms as you do without a diagnosis except that i have hashimotos and am hypothyroid. I have tingling on the top of my head and a balance issue with tons of other symptoms with no explanation. The things that come to mind for me with your situation, is probably a combination of things. Autoimmune disease, thyroid issues and candida. Were you on antibiotics after the c-section? Also, have you taken lots of antibiotics in the past and were you on birth control pills before baby? These are things that can stir up candida (overgrowth of yeast). It can do lots of damage. Google all the info you can on Candida. Also, you can definitely have an autoimmune disease and have a thyroid problem and it may not show up on blood work. Blood work is not the end all. If i were you I would go on medication for the thyroid and see if it helps. Also you can read the book "what your doctor won't tell you about thyroid disease." I am not 100% sure if that is the exact name of the book, but it is something very similar if not that. The dr.who wrote the book (name escaped me for the moment) talks about treating the symptoms, not necessarily going by the blood work. These are just a few pointers to start with. Good luck. Let me know what you find out. LaLa

 
Old 01-14-2012, 11:42 AM   #3
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Re: Autoimmune? Can't get a DX

LaLa-I'm sorry you feel so awful too! Thyroid stuff is unbelievable! With your Hashimotos you get symptoms of both hyper and hypo correct? I'm sure I do have a candida problem, my tongue is white. I don't take alot of abx and I didn't take them after the baby. I'm at the point where I just want to know what the heck I have. I will definitely look for that book. Thanks so much!

 
Old 01-14-2012, 11:53 AM   #4
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lala52 HB Userlala52 HB Userlala52 HB Userlala52 HB User
Re: Autoimmune? Can't get a DX

Sky:
I can relate. I have been suffering for years and have been to every dr known to man. I just want to know what i have. I keep feeling like something is very wrong with me and i am going to die. Also, how do we get the proper care if we don't have a diagnosis. Also, yes i do have some hyperthyroid symptoms, but if i was not on meds i am hypothyroid. But even though i take synthroid, i am not sure if my dose is correct. Lately, my hair is falling out like crazy. My T3 was on the lower side and i am wondering if that could be the problem. I am going to put a call in to my dr next week and see what she thinks. Also, I know i have candida, but i can't get rid of it. My big problem with candida is chronic gas. Try living with that one. Constant bloat and constant gas. The only thing that cures candida is a candida diet which is hell. I take natural supplements and i have taken anti fungals, to no avail. I have chronic nausea and indigestion also. The list continues. Talk soon. laLa

 
Old 01-19-2012, 06:58 AM   #5
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KelleyZ HB User
Re: Autoimmune? Can't get a DX

You are an EXACT carbon copy of me going back to 1987!
You are not crazy nor are you a hypochondriac. I have been, and continue to be where you are so I hope we can help each other.

First of all, are you taking any anti-anxiety/depression medications? Anything like Paxil, Celexa, Wellbutrin, just to name a few. They are what's called SSRI's (seratonin uptake inhibitors). I have some good reasons for asking.

Next, where are you as far as working with an endocrinologist? Have you had thyroid antibody tests done? Have you ever been told you have "Hashimoto's Thyroiditis"?

To complicate my matters more, I also, like you but worse, have serious cervical (neck) spine issues with spinal cord compression. The signs and symptoms that injuries like these produce actually mask the disorder that was and remains present. I'm sure your doctor's are thinking that alot of your muscle pain and other symptoms are coming from the disc herniations. This is very true - TO A POINT. And this is really where you have to stay focused and grounded. Meaning, do not let your spine issues be the waste-basket that the doctors dump every explanation into for your symptoms.

Again, I would like to help and I really think you can help me as you get some of your own answers. Another question for you: do you ever get stroke-like symptoms? any paralysis in your face? trouble talking, trouble swallowing?

I believe I have a disease called Hashimoto's Thyroiditis Encephalopathy. I'm seeing a neuroendocrine doctor on Feb. 1st and would be glad to let you know what she says. In the meantime, please let me know about the questions above.

No matter what, know that you are not crazy and I sure hope your family will be more supportive of you than mine has been of me!

 
Old 01-26-2012, 01:07 PM   #6
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Skymama10 HB User
Re: Autoimmune? Can't get a DX

KelleyZ-thanks for your reply. It helps so much to know that someone out there can understand how you feel. I am taking Zoloft currently because I had terrible postpartum depression that actually showed up when I started to get sick with whatever I have. I have had all the antibody tests and nothing shows up. It's weird my tsh bounces from borderline high to borderline low. I did the radioactive iodine scan and it showed increased iodine uptake. The endocrinologist feels I have Graves. I think I have Hashimotos bc I get Sx of both hyper and hypo. Also I can feel my thyroid swell sometimes. As far as Neuro Sx, yes I get them too. There are times I feel like I have trouble swallowing, I'm dizzy, I get tingling in my face and I get slight tremors. My neck is definitely an issue but my body hurts all over. My muscles and joints ache terribly. I don't think I have fibromyalgia but I do know that thyroid probs and fibro are related. Now I'm struggling with anemia. It's so weird. I have had scopes to see if I'm bleeding internally and I'm not. I just want to brush my hair without pain and be able to run around with my 14 month old. Something is going on and no ones can figure it out yet. Im trying to avoid a muscle biopsy. The really weird Sxs I get are the hyper reflexia in my knees and intermittent thick tongue/speech. I have had 2 MRI of my brain which were normal. I sure hope we can figure this out. funny I thought that is what doctors are for. Please let me know how your appointment goes.

Skymama

 
Old 01-26-2012, 01:09 PM   #7
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Join Date: Jan 2012
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Skymama10 HB User
Re: Autoimmune? Can't get a DX

KelleyZ-thanks for your reply. It helps so much to know that someone out there can understand how you feel. I am taking Zoloft currently because I had terrible postpartum depression that actually showed up when I started to get sick with whatever I have. I have had all the antibody tests and nothing shows up. It's weird my tsh bounces from borderline high to borderline low. I did the radioactive iodine scan and it showed increased iodine uptake. The endocrinologist feels I have Graves. I think I have Hashimotos bc I get Sx of both hyper and hypo. Also I can feel my thyroid swell sometimes. As far as Neuro Sx, yes I get them too. There are times I feel like I have trouble swallowing, I'm dizzy, I get tingling in my face and I get slight tremors. My neck is definitely an issue but my body hurts all over. My muscles and joints ache terribly. I don't think I have fibromyalgia but I do know that thyroid probs and fibro are related. Now I'm struggling with anemia. It's so weird. I have had scopes to see if I'm bleeding internally and I'm not. I just want to brush my hair without pain and be able to run around with my 14 month old. Something is going on and no ones can figure it out yet. Im trying to avoid a muscle biopsy. The really weird Sxs I get are the hyper reflexia in my knees and intermittent thick tongue/speech. I have had 2 MRI of my brain which were normal. I sure hope we can figure this out. funny I thought that is what doctors are for. Please let me know how your appointment goes.

Skymama

 
Old 03-27-2012, 10:00 PM   #8
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hopefloats36 HB Userhopefloats36 HB User
Re: Autoimmune? Can't get a DX

How are you ladies doing? I've been following and wondering if there were any updates on your medical issues.

 
Old 05-01-2012, 08:10 AM   #9
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Re: Autoimmune? Can't get a DX

Hi There,

I hope things are getting better for you.

Craving things that are not food such as chalk immediately makes me think of iron deficiency. Do you like to chew on ice also? A severe lack of iron can cause extreme fatigue, muscle weakness, lightheadedness, and much much more. Please get your levels checked immediately.

 
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anemia, autoimmune, thyroid, undiagnosed



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