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Frustrated and continuing to look for diagnosis
Autoimmune Diseases | Last Active: Mar 4 8:39am | Replies (13)Comment receiving replies
I’m a 63 year old female who has Hashimotos as well.
My journey started 18 years ago with chronic anxiety with heart palpitations. Today because of being misdiagnosed and docs blaming everything on menopause (even at 40) I have multiple autimmunes. . Psoriatic arthritis, Degenerative spine, Multinodular Goiter. My thyroid labs came back in the normal range except for my TPO ( thyroid antibodies). So we just monitored my thyroid with labs, sonograms and biopsies.
I’m unable to function mentally or physically. Im writing this lying in bed exhausted at 10 am.
I have all your symptoms except migraines. All treatments have only made me feel sicker.
I went Gluten Dairy and sugar free after being admitted to the hospital for what I thought was a heart attack only to finally get my diagnose of Hashis after 10 years of Endocrinologist Rheumotologists and multiple doctors. The diet change helped a lot .
Unfortunately my latest autoimmune Anemia has floored me. I have brain fog so bad I needed to stop working. So weak that I couldn’t stand and for the first time depressed. In between my infusions for Psoriatic arthritis my labs now showed my Red Blood count very low and an m spike. Sent me to oncologist and he told me he doesn’t know why I have the spike for a form of leukemia but I’m severely anemic even though my iron levels are normal. Because of inflammation I’m storing my iron in my tissues and it’s not in my bloodstream. Talking transfusions.
I decided to end the insanity and finally have my thyroid removed to stop new autoimmune from developing , hopefully, or at least get my thyroid related issues under control. . Also One of my nodules have double in size at 6 cms and I’m coming up undiagnosable with my biopsies.
My advice don’t let Doctors tell you there’s nothing when you know there is!! Find a doctor who is knowledgeable with autoimmunes and the proper ways to test for them. Standard bloodwork does not work with autoimmune.
Good luck to you. My first time posting and it only took me 3 hours lol hope it makes sense and is helpful 🙂
Replies to "I’m a 63 year old female who has Hashimotos as well. My journey started 18 years..."
@lolajean @laurie6 @blairbodrato You all seem to be caught in a web of doctors and blood tests, and unknown diagnoses! I got lost just reading it all. But the truth is, you are suffering while you are caught in this web. I’m just so sorry.
I don’t know where you live, but the Mayo Clinic has a care network of hospitals around the country that you may want to try going to.
https://www.mayoclinic.org/about-mayo-clinic/care-network/network-members
These are independent hospitals that work closely with Mayo. Maybe someone at one of these hospitals could help you pull it all together! I also have this lists of tips for a diagnosis from the Autoimmune Association .
https://autoimmune.org/resource-center/diagnosis-tips/
I hope this has been of some help. Maybe you could continue your conversation as you compare what you learn. And, please let me know, too!
You are right that doctors will chalk everything up to anxiety, depression, hormones, and/or menopause if you are a woman. I, too, had the runaround with doctors (endocrinologist, rheumatologists, primary, gastroenterologist, hematologist, cardiologist, OBGYNs, orthopedic doctors/surgeons, neurologists, psychologists, etc.). Took way too long to diagnose me with iron deficiency, Hashimoto’s thyroiditis, hypothyroidism, and spinal cord injury due to cervical spondylitic myelopathy.
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I don’t have hashimotos or lupus.
But yes, if you have one autoimmune, it’s likely others are co occurring.
Your symptoms sound like mine, but I don’t have a thyroid problem or rheumatoid arthritis.
Diet changes and exercise are the best treatments for safe monitoring of health status.
I have anemia and I supplement with elemental iron and beef liver along with eating almost all REAL FOOD. It helps.
My mom has Parkinson’s and I’ve had most of the non-motor skill symptoms going back to my childhood even.
I only have a partial diagnosis and I honestly don’t think a diagnosis is going to serve me when it takes 40 years to get..
It’s still not “official” because there are no tests to have a stamp on my forehead to please be patient because I’m slow EXCEPT IN TRAFFIC 😉
Good luck and Happy New Year and try to stay chill and enjoy life at whatever pace or level you choose. Life doesn’t have to be perfect to be wonderful!
Losing patience with our selves is easy to do and not helpful.