Frustrated and continuing to look for diagnosis

Posted by omgthehumanatee @omgthehumanatee, Feb 22, 2019

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

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

@lolajean

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 🙂

Jump to this post

@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!

REPLY
@becsbuddy

@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!

Jump to this post

@lolajean @laurie6 Thank You so much. I happen to live in the NYC area and have access to amazing docs. I just started having these symptoms daily after getting my recent Covid shot back in December and they gradually got worse to the point of being not knowing which days I’m able to function. I will say this…there are medications that work I just haven’t been prescribed them for this. I had extra from my Crohn’s disease and by process of elimination I realized that my eyes specifically weren’t giving me issues when on prednisone. This tells me that it might be something inflammatory along with whatever else but the bloodwork I did get in the past shows infections in all white cells which have gotten worse bringing me to today leading me to call an ophthalmologist with urgency. I have gone before to a retina specialist eye dr and ent stating all was good. Well it’s not. I’ll be in tears you can guarantee this begging for at least something to hold me over until I find someone else who can find a glimpse of anything. An MRI was also clear.

REPLY
@lolajean

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 🙂

Jump to this post

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.

REPLY
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