Sarcoidosis ?
Posted , 3 users are following.
Hi everyone,
I have lots of medical issues and I am sure alot of them are connected. I have had COPD with asthma since 2008, an enlarged heart since 2012, and insulin dependent type 2 diabete since Jan 2014 after Massive doses of Predisone in hospital for COPD and congestive heart failure over a two week period and then on it at home for 6 months. My gloclose level when I entered the hopital was 88 and after 3 days of predisone it was 500+.
Just in the last couple of monthes I have been so fatigued I have been having to force myself to get out of bed. I am in constant pain, have gained 40lbs, and am moody. I demanded a blood test to find out why I was so tired.
Lab test show liver and kidney level slightly off, most hormone levels were either slightly low or high, parathyoid (pth) real high, calcium alittle high, Vit D real low, Vit B12 real high. Platlets and rbc were low, while wbc and rdw are high.
My spleen is twice its normal size (22 cm), my liver is enlarged (31 cm ) with multiple liver lesions, most of them cysts but several they are sure about because I wasn't able to hold my breath as long as they wanted me to on MRI. I hope they are cysts. I have an adrenal nodule, a kidney nodule and getting ready to have surgery on April 6th to place a new renal artery stent because my old one is "floating" what ever that means. Also schedule to see an Endo for my parathyroids because PCP now thinks I have a mass on one of those glands also. Oh and a bone scan since Vit D is so low. I have two cataracs and vision issues with floaters and loss of vision.
I saw my Kidney doctor today and he mentioned Sarcoidosis. He has asked the renal vascular surgeon to do a biopsy of kidney nodule and adrenal nodule at the same time as the stent is placed on April 6. He wants me to see my pulmonologist and have an MRI of my Lungs and get new breating test done. My PCP wanted to give me Vit D but my kidney Doc saw how high my PTH and Calcium was and said let the endo decide.
Sarcoidosis really scares me because I can not have Predisone for fear of what my blood sugar levels will do. I am already taking large amounts of Metformin and two types of inslin (Lantus & Novolog) and still never get readings under 100.
So far nothing has been treated just testing and Let's wait on this test or this specialist. I am tired of tests and doctors. When I said this to my PCP she said sounds like you are depressed and wanted to treat me for that! LOL
Anyway sorry this is so long. I do tend to ramble sometimes. Does anyone think all or some of this could be related to Sarcoidosis? I know my doctors will figure it out sooner or later but I hate the wait.
0 likes, 9 replies
Nickademus sandra59613
Posted
Im sorry th here that you have so many health issues going on at once. I have Sarcoid, but I'm not a Doctor so cant really say what is going in for you. I appreciate the wait and the not knowing is so very frustrating. This is just my viewpoint; your body is dealing with alot of health issues that are significant, affecting major organs and dealing with lots of medications. Im not surprised that you feel so tired as youre body is working so hard all the time. Plus medications working together can cause problems as well as their own side affects
You dont have to take Prednisolone for Sarcoid. there are other medications. My consultant just said to me that steroids are the best of a bad bunch. You dont automatically take pred for Sarcoid. In many cases Sarcoid can go untreated. Only if its a severe case and its not always a long term medication to take
My dad has COPD, Asbestosis, has angina, another heart condition plus a spinal injury from a road accident years ago and has had a colostomy following rectal cancer. Im not comparing illnesses to yours however. He is so very tired, everything is hard for him and mainly because his body works so hard to keep going.
I have no idea if any of this is related to Sarcoid and unfortunately your only solution is to wait to receive a true diagnosis. Dont worry about something that might be or not be. There is so much going on for you right now
I wish you all the best
Kind Regards
Nicola
sandra59613 Nickademus
Posted
Thank you for you kind words. I am sorry to hear you are suffering with Sarcoidosis. I do understand that steroids are not the only medicine I can take but I know it is the best one available.
I have an appointment almost every day next week so hope I will get some more answers to atleast a couple issues. I want to start treating something but I understand that until they look at everything what helps one thing may do damage to something else. I guess I just need to be patient but it is hard. I am glad I found this site because it does help to talk to others and to see what others are going through and what helps them.
Best of health and luck to you
Sandy
tangles sandra59613
Posted
I am also sorry to hear of your many complaints.
Some of your issues sound like issues I have faced caused by Sarcoid.
e.g.
enlarged spleen and liver.
Low platelets
Eye issues, sore eyes, sun light sensitive
Fatigue.
Weight gain.
Constant joint pains.
Moody.
My brother had renal issues caused by granuloma passing through kidneys.
This is something that perhaps you should pass on to your renal doctor. Most would never have heard of this issue as it is only in sarcoid.
Yes a lot of your issues sound like sarcoid.
Perhaps with your doctor’s help you may now be able to identify the cause of these problems and now start to attack these issues from the best direction.
Perhaps it might be a blessing in disguise?
Hope all goes well for you.
Regards
Tangles
sandra59613 tangles
Posted
Thank you for your kind words. It is good to hear from others who are going through some of the same things I am (although I don't wish this on any one.) I have heard of granuloma and I searched all my test reports but I do not see it there, so either its something I read or something the doctor has said. I will put that on my "Ask the doctor" list. My PCP hated my notebook but all my specialist listen to even the oddest thing I say. Like with my renal stent, my PCP said "Stents don't just come loose. Once they are put in they stay in." My kidney doc said "well let's go look!" Come to find out it has moved or was never put in right the first time. So goes to prove what I knew all along, doctors don't all know everything all the time. I have fired my primary but she doesn't know it yet as I still need to get meds filled while replacing her and I perfer for them to all come from the same doctor. The endo I am seeing next week is an internal medicine doctor and I am hoping she will take over as my primary. (If I like her that is,) She was recommended by my kidney doc who I love so should be good.
Sorry there I go rambling again. Anyway thank you for the suggestionand best of health and luck to you!
Sandy
tangles sandra59613
Posted
Granuloma is when the white blood cells which become over active and cause all of this damage. Then they amass in a clump (referred to as a crystal or granuloma) these cause pain in joints, renal issues for my brothers case and other assorted problems.
Enlarged spleen in my opinion is the body trying to deal with all the extra activity of the white blood cells. Also taking out to many platelets.
Please excuse my poor spelling.
Note I am not a doctor but a long term sufferer of Sarcoid.
Good luck
Tangles.
sandra59613 tangles
Posted
Would my white blood cell count be high with this? They have been on the low side of normal, My RBC and platelets have been low and RDW and RDW-STDEV have been high. Do you know what test I would need to rule it out or confirm it? I know you are not a doc and I will talk it over with him just want to do some research without frying my brain too much. LOL sometimes the more I read the less I know!
tangles sandra59613
Posted
White blood cells become over active. Not increase in number.
Only a biopsy will confirm sarcoid.
Usually a lung sample taken by your lung specialist. I have also had a bone marrow sample taken in 2008 it was far less intrusive. It found granuloma in my bone marrow. This confirmed that sarcoid was still active in my body but was no longer a life or death issue as my lung function tests have all been good in recent years.
Bone marrow test they take a small sample from your hip which only requires a very small incision then a needle to take a small sample of bone then the marrow underneath the hip bone.
This proceedure is OK and so much so you are usually given the choice of going under or just a local.
I chose the local and was awake the entire time.
Piece of cake.
Tangles.
tangles sandra59613
Posted
I was able to research on your behalf and find some info for you on granuloma
I hope the following will help you a little.
"Sarcoidosis is a condition in which abnormal nodules, called sarcoid granulomas, appear in the body’s tissues. Sarcoidosis can involve any organ in the body, but affects the lungs or the lymph nodes of the chest in about 90 per cent of cases. It can develop at any age, but mostly affects people in their late 20s to early 40s.
Sarcoidosis is not cancer, and is not related to tuberculosis, which is a serious and potentially fatal bacterial infection of the lungs. Most people get better within one to three years and may not need any medical treatment other than close observation by their doctor.
The small inflammatory nodules present in sarcoidosis are known as sarcoid granulomas. They comprise groups of immune cells, which are normally part of the body’s defence system. Sarcoidosis usually affects the lungs or the lymph nodes near the lungs. The reason for this is not known. Lymph nodes elsewhere in the body such as the neck or armpits may be involved. In about 10 per cent of cases, sarcoidosis can involve other organs or tissues within the body, including the salivary glands, liver, eyes or skin. stly affects people in their late 20s to early 40s.
Sarcoidosis is not cancer, and is not related to tuberculosis, which is a serious and potentially fatal bacterial infection of the lungs. Most people get better within one to three years and may not need any medical treatment other than close observation by their doctor."
Hope this helps.
I find I have both joint pains and enlarged organs due to granuloma.
Regards
Tangles
Newton sandra59613
Posted