Wondering how many of you with APS also have adrenal insufficiency?
I've found a few links on this in doing some research but not a lot. Next week am having major surgery and the fact that I take cortisone for my adrenal insufficiency has become a major issue with the hospital, egads, let alone how they are treating me for my APS. Am going in knowing I seem to know more about this than they do but also knowing I must have this surgery. However, my question remains, and perhaps it has been addressed here before but I can't remember.
Thanks so much!
Leigha
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Leigha
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You don't mention whether you have Primary or Secondary Adrenal Insufficiency.
(My husband has Primary AI due to Adrenal Infarction after CAPS and Primary APS.
Have you seen your Endocrinologist about a treatment plan before surgery. Take your "Addison's Disease" An Owner's Manuel to hospital with you. If you don't have one, go to the English Addison's Disease website (it seems to be the best).
Derek makes sure he has his owners manuel with him when he goes into hospital, and takes his own meds with him,
We are lucky that his Rhumy and his Endo actually talk. His Endo has control of his main care and they both share all medical results, tests, reports, and actually physically speak to each other.
Check with your Endo before going into hospital for a plan of attack re Stress Dosing etc.
When Derek had to have a drain put in to his heart to drain a Pericardial Effusion, he was the one that asked about extra HC and they all thought it was a great idea, and why didn't they think of it. They were busy running around working out what to do about his warfarin/hepron management for the procedure.
I appreciate the link, APsnotFab, which led me back to your post in March, Tiggercat. From there I found several medical links and kept on searching myself: ncbi.nlm.nih.gov/pubmed/126...
My question is only partially answered, and I think it a good one. There does indeed seem to be a link between APS and adrenal insufficiency. However, how many of us with APS have AI, what is the percent? Has a study even been done?
Thanks to you both for your input.
Leigha
It seems to me that APS or Thick Sticky Blood Syndrome as I prefer to call it is likely to cause every organ and gland in the body to malfunction slighty or even severely.
Many sufferers have been found to have Hypothyroidism despite normal blood tests.
And this thread is about Adrenal Insufficiency. How many other glands are affected?
The way I see it is if the blood is too thick then oxygen, glucose, nurients and hormones will have impaired transfer between blood and the cells and vice versa.
In short all the cells in your body will be slightly starved of the things they need to be healthy.
I also deduce that transfer of oxygen from the lungs to the blood is diminished but this will not show in blood oxygen measurements because oxygen uptake is also diminished leaving the cells suffering from hypoxia.
I read an article in the NZ Medical Journal (copied from somewhere else) that states:
"Patients with APS may have involvement of the adrenal gland, but rarely present with adrenal haemorrhage or insufficiency.
Addison’s disease presents in only 0.4% of patients previously diagnosed with APS, and conversely APS is diagnosed in less than 0.5% of patients with Addison’s disease. Even though primary APS is more common in women, adrenal involvement is more frequent in men."
Author information: Robert Starke1, Patricia Amoako1, Larry Cytryn[2], Sameer Mahesh; Department of Medicine, Montefiore Medical Center, Albert Einstein College of Medicine, Bronx, NY, USA; Department of Hematology, Montefiore Medical Center, Albert Einstein College of Medicine, Bronx, NY, USA
You could do a search to see what you could find out. It is something I have been looking at quite a but as well. I have only come across one other person that has Primary APS and Primary AI.
"To describe the clinical and immunologic characteristics of patients with adrenal involvement and antiphospholipid syndrome (APS), we conducted a computer-assisted (PubMed) search of the literature to identify all cases of primary adrenal insufficiency associated with antiphospholipid antibodies published in English, French, and Spanish from 1983 (when APS was first defined) through March 2002. We reviewed 86 patients (80 from the literature plus 6 from our cohort); 55% were male, and the mean age at presentation was 43 +/- 16 years. Sixty-one (71%) patients had primary APS, and 14 (16%) had systemic lupus erythematosus. In 31 (36%) patients, adrenal insufficiency was the first clinical manifestation of APS. Abdominal pain was present in 55% of patients, followed by hypotension (54%), fever (40%), nausea or vomiting (31%), weakness or fatigue (31%), and lethargy or altered mental status (19%). The main finding in imaging techniques was compatible with adrenal hemorrhage (59%) and in histopathologic study was a hemorrhagic infarction with vessel thrombosis (55%). Lupus anticoagulant was detected in 97% of patients and the anticardiolipin antibodies titer was positive in 93% of patients. Most patients (95%) were positive for the IgG isotype of anticardiolipin antibodies, whereas 40% were positive for the IgM isotype. Baseline cortisol levels were decreased in 98% of patients, ACTH hormone levels were increased in 96% of patients, and the cosyntropin stimulation test was positive in 100% of patients tested. Steroid replacement therapy was the most frequent treatment (84%), followed by anticoagulation (52%) and aspirin (6%). Thirty-two of 35 (91%) patients with prolonged anticoagulant therapy were in good health with a mean follow-up of 25 months, whereas 25 of the 69 (36%) patients with outcome data available had died. The results of the present review stress the clinical importance of systematic screening for lupus anticoagulant and anticardiolipin antibodies in all cases of adrenal hemorrhage or infarction. An initial screening for hypoadrenalism is mandatory in any antiphospholipid antibody-positive patient who complains of abdominal pain and undue weakness or asthenia."
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Microscopic hematuria--anyone have it?
iNR
Question for those not on anti coagulants
Requesting experience and updates from those who have been on Xarelto for APS for 6 months or longer.
