Autoimmune confusion
Posted , 9 users are following.
Hey all, I've kind of been lurking for a while and posting here and there in other groups! I've been sick for going on seven months now and my symptoms are so debilitating that I've cut my hours in half at work, and some days I can't get out of bed after sleeping 12 hours. I have a myriad of crazy symptoms that come and go but here are the worst and most persistent:
- crippling fatigue
- tachycardia
- hives without a trigger I can find
- loose stools
- muscle twitches/spasms
- floating sensation/early morning dizziness and clumsiness
- occasional high BP
I had a low tired positive ANA, a positive rheumatoid factor, and a high level of thyroid antibodies. My endo confirmed Hashimoto's, but ruled out my symptoms as related since my thyroid levels are all perfect. The only other thing that shows up in my blood is that my RDW is usually high, occasionally you can catch mild anemia (not always), and any time I've been tested for uric acid it's been high.
My primary doctor decided it wasn't autoimmune based on a test that is one of the only autoimmune tests that only shows up positive if you have RA and put me on Cymbalta for fibromyalgia and referred me to a cardiologist. The Cymbalta has not made a dent in my symptoms at all, and I'm sure this is related!
I asked for a referral to a rheumatologist but I can't get in for another month. What should I ask them to look at? Any and all advice is so much appreciated!
0 likes, 16 replies
Nonameslob
Posted
Oh! And my cortisol came back low for two blood tests and a saliva test, but an ACTH test ruled out Addison's.
margaret22116 Nonameslob
Posted
Interesting situation. I am not sure about the Addisons but feel it is still a possibility. I don't know why they say you don't have auto immune. Hashimoto is classically auto immune!
I have an auto immune/auto inflammatory disease and all the symptoms you have are symptoms I have had. In terms of pinpoonting exactly what it is .....that is the hard part. A rheumatologist if they are good should be able to work it out. They will repeat testing and monitor symptoms. But be aware, my bloods are usually very unremarkable and yet I can be having the worse symptoms going on.
I am currently in remission and my blood pressure has gone to it's lowest point ever. My esr has dropped. Esr is an inflammatory marker. Has that been checked? Very non specific marker though. Crp too should be checked. I get the hives too ....or I did get them when disease was active.
Your family doctor really can't rule out auto immune disease. It is a very complicated area which requires a lot of expertise.
Nonameslob margaret22116
Posted
Hey, thank you! I have not had my ESR or CRP tested. After having shown up positive for RF and ANA, my doctor tested my CCP, which is what only looks at RA, which was negative. My Sed Rate was normal. I'll ask my rheumatologist to follow up with these tests! I'm really hoping for a doctor who looks at my symptoms and not only my blood, as I'm young and I believe I'm in the early stages of whatever is going on, so I think finding something in my blood might be difficult.
When I was 13, I got either Gullian-Barre or Post viral ataxia after a bout with mono (my neurologist couldn't diagnose the difference as I didn't have the neuropathy associated with gullian-barre, but I was too old for Post viral ataxia), so I'm wondering if whatever I have now is related.
Laureate20 Nonameslob
Posted
Hi there
Sorry to hear you've been suffering, your story sort of sounds similar to mine.
I've not been well for years but it got very bad recently and I've been unwell for 9 months can't work etc I've been admitted to hospital 5 times and had so so many tests done.
I'm still under investigation at the moment for other things but I have all of your symptoms other than hives plus quite a few more but I've got positive ana in my tests and an underactive thyroid which was always borderline to begin with always get told I have thyroid antibodies.
I was tested for addisons too which was ruled out I was then finally diagnosed with Postural Tachycardia Syndrome or POTS for short which can cause a lot of symptoms and also chronic fatigue syndrome, I'm taking steroids for my POTS and still under investigation for a lot of other symptoms I have but just thought this might help you as I'd never heard of it before I was diagnosed, it may not be the same for you but if you have a look at the POTS uk website or on the NHS it explains all the symptoms.
Hope this helps, I wish you all the best if you have any questions please just give me a shout
x
Laureate20
Posted
margaret22116 Laureate20
Posted
Nonameslob Laureate20
Posted
I actually have looked into POTS, but it doesn't fit because my heart palpitations/tachycardia doesn't change positionally. So if I'm having a bout of tachycardia, its the same lying down as it is standing up. 😑
margaret22116 Nonameslob
Posted
I have the tachycardia but not POTS. It often happens with auto immune disease for a variety of reasons. Should, of course, be checked but not always as sinister as it may seem. But I was told it was a symptom of 'active' disease.
Nonameslob margaret22116
Posted
Thank you that is very helpful! I see a cardiologist on Tuesday and I seriously doubt he is going to find anything ... I'm certain this is a systemic autoimmune disorder. Not going to lie though, the longer this goes on the more and more I wonder if I'm crazy or if I have cancer or what. 🤔
modelar Nonameslob
Posted
Sorry that you're struggling so much, and the medication is having no effect.
I have many of your symtoms but no positive blood tests for auto immune.....yet. ....
I have been passed from one specialist to another over the past few months. They all appear to do the standard tests and if they are negative sign you off.
I have Googled my symptoms and unfortunately a lot of them are common in many conditions. My view is that unless the condition is advanced and the symptoms are prominent then you will be signed off, unless your lucky enough to see a specialist that is knowledgeable about your condition.
The only advice I can offer you is to find the conditions that have symptoms similar to yours. Look for those specific tests,
make a note, and ask your doctor to refer you.
Do you get any internal organ symptoms?
Have you had b12 and D vitamins checked?
Best of luck with the rheumatologist ?
rocky31676 Nonameslob
Posted
The symptoms you have written are common in autoimmune disorder - Leukocytoclastic vasculitis (LCV).
Check with a rheumatologist the type of LCV you may have.
Sometime all lab test are normal in LCV, yet you will see all the symptoms that you
have. RF can be positive or negative in LCV.
Nonameslob rocky31676
Posted
Actually I have been eating more than ever. But I think it's because I am stuck in bed half the time and just super bored. 🙃
Nonameslob rocky31676
Posted
Aphra Nonameslob
Posted
Hoping you find an answer soon. Every answer we find, leads down another rabbit hole. I have many of your symptoms. Mayo diagnoised me with Autoimmune Urticaria based on positive Basophilic Activation in my blood work. I get Hives a lot! New medications, stress, illnesses, the sun! They also labeled me with a Mast Cell Disorder. Causes Mast Cells to release immune cells to attack invaders like bacteria, viruses, but they are normal foods, stress or medications.
Causes me to sweat like mad, Migraines, GI issues, tachycardia, palpations, flushing, nausea, dizziness and horrible tinnitus.
Corlanor was the drug that made the most difference with my tachycardia symptoms and other heart problems. I've had no side efeects and my heart rate now stays under 70 beats per minute! Don't give up!
Creatiff Nonameslob
Posted