Badges (1)


Member has chosen to not make this information public.


Member not yet following any Pages.

Posts (4)

Tue, Aug 25 7:58am · Low TSH readings? in Diabetes/Endocrine System

I have had Graves disease for over 45 years and have recently been able to get my thyroid under control after a 2 year attack on my body of another unknown autoimmune disease that sent my TSH reading at its height of 21. I had ablation long ago at 18
My opinion is this – if you are not going to an endocrinologist you should. It is too complicated to leave thyroid care to someone who is not. I have heard through the years over and over "your numbers are within the range". But I did not feel well. I am very proactive with my health and (sorry doctors but I do) complain and question when I do not feel well. My long time endocrinologist said – "I strive to have my patients numbers in the range but then will "tweak" the meds based on their verbal input of HOW THEY FEEL. No two people are the same." This doctor has retired and my current endocrinologist changes my meds in very small increments. Waiting 3 months in between each change before taking blood tests again. I complained about that but it has finally worked by his addition of liothyroxine to my levothyroxine. I didn't have energy in the late afternoon where I could almost lay down. It was an overall fatigue. (But my numbers were fine) He finally added the liothyroxine and most days I still have energy at 8 pm.
I hope this helps because it is a very complicated and individual road we all travel with thyroid problems.

Thu, Jul 16 8:02am · Help with Hot Flashes in Women's Health

I am 65 and have had hot flashes ever since I had a hysterectomy at 40. I always knew they were coming because of slight nausea and heat that I can only compare to a super hot light turned on in my chest and then the sweats. I equate the feeling to "flu like." My mother had hot flashes in to her 80's. I have been using HRT patches (ESTROGEN ONLY) for over 20 years. My doctors through the years told me to think about discontinuing, that I should quit – telling me of the dangers but quality of life PLUS my bone health were worth the chance for me. And yes, stress brings the flashes on for me also. Very annoying and embarrassing in the workplace or really anywhere. I tried to quit one time and it was unbearable. It is interesting to me that now after all these years, my current doctors and research I have seen say the benefits outweigh the dangers. Just the opposite of what I was told years ago. My mother had breast cancer at 72 and she used no HRT. I have had 2 breast biopsies 10 years apart and neither were cancer. I had to make a choice long ago.

Sun, Jan 12 8:52am · What to do when in SVT (supraventricular tachycardia)? in Heart & Blood Health

My experience with SVT's is quite different. I have an un-diagnosed autoimmune disease. I have been admitted to 5 different hospitals from Sept. 2017 through June 2018 including about 2 weeks in the Mayo hospital in Minnesota. SVT and fluid filled lungs were my first of many symptoms. I did not know why I was so exhausted and could hardly stand up or walk until going to the ER and being rushed in an exam room because my heart was racing. They tried the "vagus" maneuvers and had no luck. They used medication (too much) 60 mg because my husband said I flat lined and my whole body was shaking violently. But it worked. Throughout my illness which was total body inflammation finally going into total kidney shut down included many times of SVT but after this initial time they occurred only in the hospitals leading me to believe, in my situation, to be somewhat driven by anxiety. Cardiologist did say I needed ablation but had to recover to even consider it. The last time I was in the hospital, I kept having SVT after SVT with me losing count after 5 and the hospital staff panicking and bringing the crash cart in, hooking me up, etc. etc. I finally said to a specialty nurse that I wanted to take a Xanax and wait 30 minutes to see if I could stop it myself. He allowed it and it worked. Two times in a row, it worked. I have not had any SVT since which is about a year now but my body is recovering in other ways. I do not take Xanax regularly. But I do have anxiety and use it as needed. I do not have any heart issues that were found except fluid around my heart that was removed, inflammation again, and have recovered enough to have normal inflammation markers for the last almost year and my kidney's recovered in 4 months so that I was removed from dialysis.
Every doctor I have seen says I am a puzzle. I take Colchicine and a very low dose of Prednisone (2 mg at present) and pray that I can recover if my illness comes back. They say they can't give me anything else because they don't know what it is.
This story may not have helped you and after having 5 lengthy hospital stays, I have left much out. I just felt that my SVT story is different because I recovered without an ablation.
I wish you the best.

Nov 22, 2018 · Autoimmune? Undiagnosed and don’t know where to go next in Autoimmune Diseases

I have been reading many of the posts and feel able today to post my story. Before July of 2017, I was very active even doing Zumba twice a week and caring for elderly mom. I have an an undiagnosed auto immune disease which began July 2017. Symptoms are so plentiful and diverse that I have had many doctors tell me I am a mystery. Not something any of us want to hear. I have been in the hospital 5 different times including the Mayo Clinic Minnesota since last year – all for different problems. I spent 12 days at Mayo paying out of pocket with no diagnosis.This also does not include ER visits. No one can diagnose my illness.
Almost all my symptoms are “quiet “ at this time but some of them were in no particular order of occurrence:

Chest pain soreness along the bra line
Soreness in rib area/lung area (still current)
Difficulty breathing (this came from fluid in both lungs)
Extreme fatigue
Pain in calves/thighs
Have Graves’ disease since 18 with just maintenance (after August disease onset T3 T4 not normal)
Extreme inflammation through out entire body causing 2 times of draining fluid from both lungs
Fluid around my heart which was drained
Total kidney failure (dialysis 4 months)
Swelling in lower stomach below belly button after eating
Interitis which required admission to hospital
Biopsy of kidneys revealed Minimal Change Disease (nephrologist said failure would not be caused by this)

I have been tested for everything- lupus (multiple times),RA, cancer, tumors, multiple MRI, PT, sonograms, xrays (I’m surprised I don’t glow in the dark). I have 2 three ring binders with hospital tests, information and discs of MRI’s, etc. Rheumatologist tested me for Mediterranean Fever but it was inconclusive.
I have been on plaquinil, prednisone all the way from 60 mg daily now currently taking 5 mg. Took as much as 1,000 mg twice intravenous during kidney episode. Prednisone is a savior and the devil. Took metropolol for my heart which has since cleared up. Colchicine which I am currently taking for the inflammation “seems” to be helping. Inflammation markers which I ask to be checked monthly are still elevated. Inflammation goes up and I get sick. I am also taking CBD oil. I have had anxiety my whole life and extreme stress in my recent life and the oil has been a godsend. My husband says I act like a normal person now. I take that as a compliment because I do feel much calmer.

I’m still trying to get my thyroid in line and get my stamina and strength back. We are considering the NIH for help in diagnosing this illness I have.
I’m sure I’m leaving something out. It has been a long road with no end in sight. I’m trying to listen to my body and take it easy.