Frustrated and continuing to look for diagnosis

Hello @omgthehumanatee, Welcome to Mayo Clinic Connect. Thank you for sharing your story in such great detail. Some of your symptoms and your struggle to find a cause made me think about another post I've read here on Connect. It might be helpful to read through the following discussion to see if you are able to relate to any of the symptoms discussed.

Groups > Women's Health > Chronic Illnesses of Millions of Women Left Untreated
-- https://connect.mayoclinic.org/discussion/chronic-illnesses-of-millions-of-women-left-untreated/

You mentioned that you have asked your doctor for a referral to Mayo Clinic but she thought you might not get in without a diagnosis. Have you thought about requesting an appointment yourself and tell them you can get a referral from your doctor? If you would like to seek help from Mayo Clinic, contact one of the appointment offices. The contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63.

Hi @omgthehumanatee. I am a 19 yo female and am similarity frustrated by my inability to function like people my own age. I have a similar list of symptoms (- the migrains, sinus issues have subsided). I had been thinking I am getting lazy in my studies or making excuses but your post has made me wonder if it’s partially the disease. As a college student I am inferiorated by my inability to remember information I have drilled over and over. I am also avid runner and having issues with fatigue, constant muscle injury, and soreness. Frustrated because cardiac workout is only way to tire myself out enough to get good sleep.

I was lucky enough to get into rheum 1.5 mo after my ANA came back high. I went into doc with dizziness, falling asleep with hr in 40s during class, and weakness. Rheum thinks I have MCTD based on titer, likely CREST syndrome. However, Derm diagnosed lupus because of malar rash. Also unknown whether my hr is slow because of cardiac fitness or bradycardia. Recently my hands and fingers have become swollen and sore. Makes taking notes painful. I come home exhausted from school at 5 and can sleep for 10 hours, easily.

Started Placquinol nearly 5 mo ago, it has helped quite a bit but not totally. Also take vit d (morning!), vit C, vit B, fish oil. Also eat gluten free, penut free, and limit red meat, to keep gi issues at bay.

Only ways for me to make it through week: I optimized my schedule to be hard Tuesday, Thursday. I sleep in on Wednesday. By Wednesday I am talking Acetominophen 4-6x a day to minimize swelling and fatigue. Never drank caffeine before, now start day with it and supplement with Monster to keep self moving. I am a mess by Thursday night, sometimes Wednesday. Every week. Used to be active/ studious all day every day. I use weekends to recover (after hard workout Sat morn). I also have to wear gloves if AC inside because my body cannot regulate temp.

Have they tested antibodies for you? Primary doc should be able to do that. Also, I got into Mayo without definitive diagnosis- ask rheum (when you get in) to write down best guess as to what you have as tentative diagnosis.

Hang in there.

Were you ever tested for Lyme disease and Lyme coinfections ?

I was tested for Lymes (just the basic test) and it came back negative.

Thanks for all the insight. I have had my ANA checked and it’s negative. Higher than earlier this fall though but still within normal range.

My primary also did some other antibodies (a connective tissue cascade and full lupus panel).

For insurance reasons it’s better for me to have a referral but I will keep that in mind.

Also, thanks for pointing me towards that article—it was an interesting read.

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 🙂

I’m concerned that A. You are getting nowhere with current medical care B that you might be putting all your eggs in one basket (Mayo) far off timewise C. You clearly have sufficient symptoms of an autoimmune disorder plus family history.
I wonder if your current doctor is a rheumatologist (absolutely should be) and have ALL potential tests been run on blood and urine.
I would get a second rheumatologist opinion locally while waiting for Mayo.
There is no need for thyroid medication unless you have entered the hypothyroid phase of Hashimotos. Please read about Selenium supplementation for that. One AI disease is often accompanied by others. Your initial illness could have been a virus like EBV ( mono) that triggered the AI response. Some Drs will treat patients based on symptoms rather than relying solely on lab values. I have 4 AI diseases and it took 10 years to get the 1st diagnosed (lupus). This is unusual and not meant to discourage you, just to point out that you have to be assertive and your own advocate. Learn all you can about lupus, Sjögrens and mixed connective tissue disease. Ask for tests that might help and you have not had yet. Keep a copy of all your test results. If you get a rash other than malar, get it biopsied WITH IMMUNEFLUORESCENT studies. Many lupus patients are initially diagnosed based on skin biopsies rather than blood tests. Academician Drs are more likely to demand a textbook case before committing to a diagnosis in my opinion.
I do hope you get answers and help soon! Put your efforts toward helping yourself and asking for what you need.

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.

I had my whole thyroid taken out and it was positive for hoshimotos so I’m unsure whether I suffer from those symptoms. I never saw anyone suffer from the same eye symptoms I’m currently having which are worsening daily. Started with onset blurred vision now it’s constant pain and feeling like I’m walking on water. I’m calling to see an eye doctor first thing tomorrow. Mine has also caused severe vertigo where I’m throwing up and feels like I’m on the worst tilt a whirl ride. I’ve also developed gastroperisis but also had a partial colectomy so thought that was my own problem. I’m seeing this isn’t the case. If I get answers I will certainly post. I also need my blood drawn it’s been a while for all my thyroid levels but have stayed on the same medication levels for years. I’m also on high levels on D3 and take 4B2’s for migraines per my neurologist which really has helped. Any other supplements seem to aggravate my eyes immediately. I empathize with you and hope your symptoms improve.