I have been a mess for about 8 months now, not feeling that great. Low energy, achey joints -wrists, ankles, fingers.
I thought it was burn out or addrenal fatigue from training for a 60mile walk so I went to the MD who ordered labs. My labs showed elevated Cortisol, ACTH, Dopamine and Norepinepherine. This prompted a CT scan of my abdomen to look at my addrenals. This came back showing a 10mm lung nodule, enlarged spleen, ovarian lesion, enlarged liver (possible due to my height 5'11) and bladder wall thickening (clinical correlation is warranted it said).
This prompted more lab tests which came back with a positive ANA, positive D-Dimer, critically low Vit D level of 9 and normal TSH levels. Because of a personl history of pituitary microadenoma in 1999 - The MD ordered a CT Scan of brain and head, which came back showing chronic sinus inflammation which then prompted a CT scan of the sinus, which of course showed a Rt maxillary sinus mucocele - chronic ethmoid inflamm sinus and a solid thyroid nodule.
This inturn has prompted a Thyroid US which I am scheduled for on Tuesday and a referral to Rheum. I also had to have a full chest CT scan due to the lung nodule seen on abd CT - I guess that shows only the lower lobe. OH and of course this prompted referral to pulmonologist. He then did a Valley Fever panel which came back negative, so he was concerned why nodule - no VF - so he ordered full CT chest.
I know - Like a comedy of errors. I keep going in for one thing and getting a whole new set of issues..... Great : )
I guess my questions is: Normal TSH with Thyroid Nodule, positive ANA and D-Dimer - could this be a thyroid issue? My sister has Hashimotos.
OR with the inflammation of the bladder, spleen, liver and the lung nodule with the joint aches, could this be more of an auto-immune Lupus thing (I read Lupus affects multi-organ issues including lung and bladder)
I have other symptoms I thought were just incidental due to turning 40- but perhaps there is a bigger picture. Fatigue, wt gain, joimt pain, heat intolerance, raynauds, neurological symptoms, some anxiety -depression (unusual for me), vision blurred, dizziness (thought this may be due to sinus issue), chronic tickle cough, and PVCs - heart palps.
Mind you - just turned 40 so I thought most of this was menopause stuff - but ironically my hormones are ALL normal : ) Of course.
NO butterfly rash and I love the sun...... Anyone have any ideas???
I feel like a hypochondriac. Every time I go in, they find something new! Seriously.... It is almost comical embarressing at this point.
I don't think that you are a hypochondriac--You have real problems. You should be checked for chronic infections that could be a complicating factor or be more directly involved in many of your symptoms. We have found that many Lupus-like patients have chronic infections like Mycoplasma, and they tend to have many more symptoms than expected by their physicians but they don't seem to closely fit a Lupus diagnosis.
You sound just like my 36yr old daughter. She had most of your symptoms. Mayo Clinic
said she had Sjogrens Syndrome. She had inflamation in kidneys, liver, pancreas,
stomach. The rhuem doc can test your SSB and SSA . She also had joint pain, visual
problems, couldn't stand the heat, was and is very tired all the time, gained weight.
She had so many complaints, She was embaressed to tell the doctors that she went
to because she thought they'd think she was a nut case. Keep us posted on how you
are doing. Good luck and look up Sjogrens, see if the more involved symptoms sound
like what you are going thru.
Thank you so much for your comments and kind words. I truly appreciate your time.
I see the Rheum on September 8th, so I guess I will learn more then. My CT Chest came back as non-calcified nodule with some irregular borders(?) - something like that, so just to be safe - they are sending me for PET scan of lung, although the MD stated a non-calcified nodule like that could also be an auto-immune issue such as RA, Lupus or Sarcoidosis.
Again we will see. I am not too worried about the PET, I dont think it is maligant, but I think it is great that they are being prudent.
I will most definately ask about the mycoplasma. A chronic infection may be the golden ticket. I do have that run down fatigue you feel from like a mono or flu. I went from feeling great, training and walking 10miles a day or every other day - to feeling like a rock star if I can fold a load of laundry : )
Thank you again for your support and not dismissing my plethora of symptoms and findings as psycho-somatic. I think once you start finding so many issues, you start to feel like a quack and embarressed (like Jan above was saying) so your openmindedness and kindness really meant a lot. Truly.
Hope all is well with you. Have an amazing rest of the week!
Thank you so much for your comments. Especially sharing about your daughter and her experience. NOT feeling alone in that "NUT CASE" scenario your described really helped put me at ease, because boy... you are so right. You really do start to feel embarressed about it and then discount yourself. So knowing I am not alone in that made me feel more at peace.
I go to the Rheum on the 8th of September, so I will ask him about Sjorens ( I have to look that up - I know absolutely nothing about that).
How does your daughter feel now? Is she back to her old self (somewhat)? I hope so. I wish her well.
I think that is what I am struggling with right now. Trying to recapture how I used to feel and the not knowing when/if I will again makes you kind of grieve for what you had (or for me, the guilt of not appreciating how great I did feel now that I dont) I want to be able to have the same stamina and energy level... so I get confused since you do start to kind of discount yourself (the nut case scenario) Do I really feel this tired and flu like or am I just being lazy now.. Is this low energy now a habit or do I really not feel well and are therefore are allowed to take it easy on myself.
I was what you may call an overacheiver type, so the not knowing how I am "supposed to feel" does a number on me. I used to be so bad about "always doing" I can rememeber once a friend spontaneously showed up asked me to go grab coffee and I said I had to make my bed and clean up first - and she said... Um Your an adult and you dont HAVE to DO anything..
I will always remember that because my personality is one that says if you are not DOING you are failing or a failure... so this being tired, achey, down and incapacitated is doing a number on my psyche.
Especially since I have no idea what the heck is going on. I am a pretty analytical person, if it doesnt have a name (or diagnosis) is it real... so I am hoping the Rheum will have some answers that will help me to feel more at peace.
As you may have read above, the next step is a PET lung scan and then Rheum on the 8th. The MD wants me to follow up with Uro and GI due to the bladder wall thickening and inflammation and the enlarged liver and spleen........BUT I wonder if I should see the Rheum first, because if it is all Auto-immune, should we not know that before other MDs run a million tests?
Could auto-immune not be the answer for the other organ involvement, and then wala! The other specialist then have their answeres : )
Thats my thinking, but again I am a rookie and a newbie at all this, so as always comments and feedback (suggestions or advice) are welcomed.
Once again, I thank you for taking your time to reply to me. Your kindness is so appreciated and please know that your words really did help and I do not feel so alone with my "AM I A QUACK" feelings : )
I hope your daughter is doing well and I send her my best.
I was searching for D-Dimer +ve associated conditions and came across ur posting. Thanks for sharing. I felt encouraged to share what I am going through so that we can may be learn more and take some useful steps.
I turned 41 this year. I was diagnosed with Hashimoto when I went for knee pain at 35 years of age. My sister has RA and so I went to the Rheum for a check and guess what? He found that I am ANA +ve and diagnosed CREST syndrome. My symptoms: from the age of 21:- Excruciating pain involving my head,neck and shoulders BUT they would alternate when they strike. They struck me about 3 times a week. I went to every specialist but everything was normal except that I had a bursitis like hard spot on my left shoulder. I was given all kinds of diagnosis including spondylitis, TMJ,extra rib, and so on. But no cure. I did struggled with my education- somehow managed to complete my UG, Masters and PhD. But I have gone through hell at times. The pain frequency increased in my 30s and I though I was unfit for married life. But I did get married but I have no children. I often dread to think how I would have brought up kids with this horrible pain. I also was often anemic, and felt fatigued.
About 4 years ago I started developing Raynauds. My Rheum is particular that I have heart screening, lung volume test and kidney test regularly as he suspects that I might have Sjogren's which can later turn out to be more seriuos . last year when I went to see an accupuncture specialist she discovered that I was almost null in Vit D3- so I took D3 pills and brought my levels to normal. Also recently my doc tested my B-12 levels and found it to be low. So Ihave been taking shots and oddly I found my chronic pain frequency reduced.
Presently I have wobbly weak and wierdly painful knees, occasional neck-shoulder-head pain, dry eyes and sever acne (which started in my 30's). Last week I had severe itch on my legs which became inflamed, reddish and hot to touch accompanied by swelling in my lower leg. I went to the doc and they did a D-dimer test which was Positive. So I went for a US of the leg but no clots were found. So... I dont know what that was all about...
If anyone who read my post can offer any suggesion, notes, comments I welcome thee.
It sounds like you have Lyme Disease. Call Igenex labs and get them to send you a kit to take to a lab that is covered by your insurance and get tested for Babesia, bartonella, anaplasma, and borrelia.
I just found this board after looking for answers to my own symptoms. My family history includes our oldest daughter and my father both with Hashimoto's Thyroiditis. My father had bilateral breast cancer. My sister has a brain stem glioma, RA, Sjögrens, Raynauds, ischemiic bowel disease and other Auto-Immune conditions including chronic low Vit. D and B. Two of our children and myself have chronic low Vit.D. I was also diagnosed with a meningioma, epilepsy, and Sicca Syndrome. There is a question of Elhers-Danlos in my nephew and I have been genetic tested for the same but the results came back negative. Not sure how extensive the DNA mapping was to include heart related or other auto-immune related conditions. There's more but this is a good start.
Last night I spent several hours in the ER after an on-call physical suggested that it would be better safe than sorry related to the week long intermittent chest pain, abdominal pain and joint pain I have been having.
After several hours and EKG, blood work, and x-ray and CT with contrast I was diagnosed with a healthy heart (thank goodness) but no explanation for my pain. Just a suggestion to follow up with my primary care physician.
The reason for the CT was to rule out blood clots because my D-Dimer test for clotting came back above normal at 7.
Today I am reviewing my test results and see that besides the D-Dimer test being abnormal I also see that the radiologist noted that he saw that my ascending thoracic aorta is mildly ectatic, measuring 3.3 cm in AP dimension, and my lungs showed a minimal amount of bilateral lower lung atelectatic stranding.
I looked into both of these two things and they are both atypical results and both are seen in auto-immune related conditions.
My Vit. D is at 17.3 (below normal) and my calcium is high at 10.3. My TSH is 4.35 out of a a possible 0.30-5.05 My T3 and T4 were not run.
My physical symptoms include my hair falling out, fatigue, weight gain, thinning skin, anxiety, extreme redness of my face if I am out in the sun for too long, headaches, pain in my chest and joints that comes and goes, numbness and tingling and degenerative disc disease at C7 and L5. Both my primary care physician and the ER doctor last night said my thyroid was normal. Are they missing something? My ER doctor did say that something was causing the elevated D-Dimmer and the chest pain but she did not know what.
I have an appointment Monday with a cardiologist for follow up for what was seen on the CT and I am in process of looking for an endocrinologist that will listen to me and these symptoms. I live in the Minneapolis area. I appreciate any feedback anyone has. Thank you!
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