Frustrated and continuing to look for diagnosis

Posted by omgthehumanatee @omgthehumanatee, Fri, Feb 22 8:33pm

Hello, I am a 29 year old female that has been struggling to get answers for why my health is declining. I was initially diagnosed with Hashimotos in April of 2018, but the three medications I’ve tried haven’t help and have developed additional symptoms and am feeling worse which has lead to my doctor thinking I have something else, but we haven’t gotten anywhere yet.

Most of my issues started about three years ago after completing my first and only Spartan Race. Up until then I was an avid weightlifter and runner. I got very sick with what I thought was food poisoning for almost a week and then it morphed into a terrible cold, ear infection, vertigo, etc for a month. After that I just never fully recovered. I was always out of breath running and my body was continuously sore.

I’ve had basic blood tests, lupus, arthritis and urine tests and they’ve all come back “within range” aside for my thyroid tests (I’ve also worn a holter monitor and had a sleep study which both came back normal).I’m frustrated that I have to wait months in between appointments with zero answers. I’ve asked for a referral to Mayo which my doctor has agreed to write up but she said unless I have a specific diagnosis that I may not get in.

Because of the long wait list for rheumatology I don’t have an appointment until July, and my docto will not prescribe me any medications until I meet with them. My Mom's twin sister has lupus and started around my age and it took her years to get a diagnosis and I’m afraid I’m on the same path.

Work is getting more and more difficult to manage. I am a risk manager in a large company and need to be able to think clearly when making decisions. I feel like I can’t keep up as a friend or as a partner in my relationships and am worried when I’m not even 30 yet.

Below is an overview of my symptoms if any of you are interested as well as the meds I’ve tried.

Thank you for listening.

———————————-

• Cognitive Issues (working memory, accessing mentoring, decreased ability to have a conversation, zoning out, dizziness/vertigo, brain fog)
• Sight Issues (Eyes struggle focusing at times, Extreme sensitivity to light, Trouble seeing at night, dry eyes,Eye twitching)
• Fatigue (Wake up tired, Afternoons extreme fatige

o Feel as though I’m walking in water with weights on my legs
• Sinus issues (Fluid in ears/ear pain,Post nasal drip, Very dry eyes, Dry mouth, Congested nose, Sinus Pressure, Sneezing)
• Skin Issues (Butterfly Rash on face appears -Gets very hot/burning, Skin itches on back on head, Very Dry Skin (use lotion all the time) Bruise easily)
o Low sex Drive
o Mood Swings
▪ Anxious, irritable, sad, over stimulated, overwhelmed
o Shortness of breath
o Nerve jolts
o Night Sweats
o Either very cold or very hot

Body Pain (Had to stop doing HIIT workouts in June, started walking/doing yoga. Stopped doing yoga in December due to extreme joint pain/muscle pain)
o Muscle Fatigue (Feels as though I’ve done an intense workout and I’ve just gone for a walk/or do gentle yoga)
o Joint Pain—These will be stiff/sore/throbbing
▪ Knees, Hands, Feet, Hips, Jaw-TMJ
o Headaches/Migraines (Used to get migraines weekly, after starting Paleo get them once a month)
▪ Auras 1 hour before migraine
▪ Last 12-24 hours
▪ Last migraine half my body went numb
▪ Headaches at least half the week (mostly tension or behind eyes)
▪ Used to get headaches or migraines while working out as well as random times of the day.
o Tingling in Body
▪ Tingling/numbness, Face (any time of day), Legs/Feet (usually after walking/at end of day), Arms (usually at end of day), Swelling (usually in the morning and after going walking)
• Digestive Symptoms (Constipation-irregularity, Bloating/Gastritis, Nausea, )Frequent urination

What makes symptoms worse
▪ Not following Paleo diet (even for a treat or one meal)Symptoms that lessened after starting Paleo
o Alcohol
o Grains
o Dairy
o Sweets
▪ Stress
▪ Lack of sleep

Thyroid Medications I’ve tried
***(made sure I wasn’t taking a multi-vitamin/iron/zinc within 4 hours of taking this. Always took at 6am and waiting 1 hour before eating.
• Armour-30mg
o Started end of April 2018—ended mid June 2018
▪ Felt great first week. After that hypo symptoms worsened immensely. Fatigue, brain fog, sleeping all the time, depressed, unable to manage workload (stayed at that dose for 4 weeks) Advised to split pill in half and took that for 2 weeks.
• Synthroid-25mg
o Started mid June—took for 2 weeks
▪ Advised to take it but if I don’t feel better or feel worse to stop taking it. Took for 2 weeks. High anxiety, heart palpitations, angry, increased heart rate. Advised by primary provider to wait 6 weeks for blood draw and was not prescribed any medication. Said perhaps thyroid problems had self corrected.
• Naturethroid-32.5mg
o July 2018-Mid October
▪ Not feeling any better compared to before starting taking any thyroid medications, Symptoms getting worse. Primary took me off Naturethroid.

Current Medications/Supplements
• Sertraline-25mg
• Fish Oil
• Moducare-1 tablet
• Mag Citrate-250 mg
• Vitamin D-4,000 IU
• Flonaze-1 spray per nostril
• Multi Vitaminin

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.

Liked by omgthehumanatee

REPLY

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.

REPLY

Were you ever tested for Lyme disease and Lyme coinfections ?

REPLY
@friendz4

Were you ever tested for Lyme disease and Lyme coinfections ?

Jump to this post

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

REPLY
@1corinthians926

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.

Jump to this post

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).

REPLY
@johnbishop

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.

Jump to this post

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.

REPLY
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