I hoping that someone here can use their knowledge to help me out. I started feeling lightheaded and dizzy along with extreme fatigue last February. Went through the rounds of ENTs, PCPs, even PT for dizziness. In August my symptoms started to progress and they included a rise in my blood pressure from a normal of 128/77 sitting to 145/89 or so. I also started to feel overwhelmed or like I was under an abnormal amount of stress. There was no basis for this feeling as my everyday life was the same, no significant life changes or incidence. I have sleep apnea, I am overweight, and suffer from fatty liver and endometriosis. Around this same time I did not get my period for 5 months ( I am 50 years old but my Gynecologist ran tests and told me I was not in menopause). My dizziness has worsened and now along with it I have a host of symptoms. Foggy full head feeling, flushing, bloated feeling, trembling, hair thinning, pale color, low back pain. My most bothersome symptom is tingling feeling in hands and feet ( like a vibrating feeling) , and EXCESSIVE unrination. I am not drinking excessive amounts, but I urinate every 15 minutes. It's not a small amount either. I noticed that once I get up and begin to move around I have to urinate and it's urgent. I have this very strange need to move, like a restlessness, can't sit/ or stand still, it's very uncomfortable almost like a panic attack that's coming on...I am sensitive to loud noises, crowded rooms. I feel short winded when talking a lot.
I have had an MRI, holter monitor, event monitor, blood work which included thyroid testing which was normal (. No testing of free t3 or t4 though). My sodium level was normal but at the lowest of the range as was my potassium. My neuro tested my cortisol that day , 3:30 in the afternoon and it was 2. He now has ordered cortisol levels drawn at 8 am and 4 pm. Complicating the matter is I have a brother who was diagnosed with mitochondrial disease and hyperandrenergic dysautonomia. POTs disease. My youngest daughter who is 10 also has a dysautonomia diagnosis. She has an issue with temp regulation and has had 5 bone fractures in the last 6 months. My BP and pulse are normal when lying down, but upon standing my systolic number increases by 20 points, my bottom number increases by 20 points ( up to 159 over 95 standing from 130/77 lying down.). My pulse goes from 50 lying down to 90-95 standing.
The only place I feel normal is lying down. I'm from the Boston area and I am treated at Mass General Hospital. Trying to find the right doctor is pure agony.
I feel like I am going at 1000 mph all the time. It's very uncomfortable. When I read these boards it seems that would make me more towards the Cushings side. Is it possible to have low cortisol yet be Cushings and not Addison's?
Please any insight anyone has will be greatly appreciated !
Did you get a dynamic pituitary MRI - or just a brain MRI? Did you get a copy of the report and the MRI on CD? If not, do - often surgeons can see more than the radiologist so you can get opinions.
A TSH and T4 test is pretty useless IMHO... so the doc did you no favor. I had Cushing's myself and my tests were all over the place - high low and normal. A 3:30 test is useless - the doc did you no favor. However, depending on the range - 2 seems a bit low. A normal diurnal rhythm is a peak in the morning and reaching a low point at night - so you may have a wonked out rhythm - I had peaks at night hence I did not sleep (failed a lot of sleep studies) and had the wired but tired feeling.
I *hear* that the place you are seeing is conservative - but you are seeing a neuro and not a pituitary doc? Why not an endo? Neuros cannot treat endocrine disorders at all - they have no idea. Midnight testing is better than 2pm testing - you want to know what is going on at night. Saliva and urine testing would help too - as well as all the hormones of the pituitary, adrenal and other stuff too... with the BP issues and urine - and ADH testing or renin, aldosterine testing? You could have DI - diabetes insipidus - water diabetes not sugar.
With such a family history - have they thought about MEN - multiple endocrine neoplasia?
My PCP just ordered a regular brain MRI. I was sent to the neuro based on original dizziness complaint. I wanted him to rule out Dysautonomia. He is taking his sweet time because he has done nothing except bloodwork for norepinephrine levels and cortisol and a 24 hr urine to rule out a kidney tumor? I m waiting on a date for tilt table testing to see if I fall under that dysautonomia category. But I'm told it could take 3 months to get that test. I am going to go back to my PCP Tuesday ( I have been back 4 times since August). And tell him I would like to see an endo. Anyone know of a good one in my area? I literally feel like I am beating my head against the wall. The doctors keep going back to this being anxiety. This neuro just stumbled upon the cortisol level. The labs range was between 15-25 from 12p-4pm. I am having a tough time coping with whatever this is that is happening as I am so tired its hard to get out of bed to do the simplest of things. Fighting the medical system sounds exhausting to me. Thanks for your insight. I will go Tuesday armed with your suggestions.
I feel your pain. Your symptoms though are at odds - I had the same set - high cortisol usually means high BP and so you don't usually get the POTS stuff. I had the same stuff and did the whole holter monitor and same as you did too - but they would not order a tilt table. I was on anti-vert and all.
I had to start florinef before my Cushing's surgery and retained my lovely low BP. I take way more than a normal dose now and take tons of salt to get a normal BP.
Anxiety can be a symptom - not just a disorder. They just don't see the whole picture. Good luck with the testing. Keep us posted.
So true! My brother went through 7 years and 13 doctors before getting his tilt table test, which he failed miserably. He has hyperandrenergic POTS which Is high BP upon standing and rapid pulse rate. It is one of the rarer forms of POTs and much harder to treat. He is now going through the endocrine battle. You would think with the family history of dysautonomia they would listen more carefully to me considering my symptoms are so similar !
Alas, I have found that when you are *out of the box* it is much harder to get answers - doctors look for common things as they should, but they tend to rather give up when it comes to getting more complex answers.
Have they thought about sending you to a geneticist? I finally just did a set of testing on my own.
"Did you get a dynamic pituitary MRI - or just a brain MRI? Did you get a copy of the report and the MRI on CD? If not, do - often surgeons can see more than the radiologist so you can get opinions".
This is so true!
First, if a problem with the pituitary is suspected then you need a PITUITARY PROTOCOL MRI;
Second, in my case a radiologist made a BIG mistake (he wrongly called the tumour) but an EXPERIENCED neurologist and neurosurgeon made the right diagnosis.They saw a mass that could be and should be removed;
Third, I agree you need an endo experienced in pituitary ailments. I cannot recommend any endo in Boston (after all I live in Australia but did meet some doctors in Boston for a diagnosis on my tumour) but can suggest that if you need surgery you do NOT want an extremely well known neurosurgeon and Brigham & Women's who MISDIAGNOSED my tumour when studying my MRI. I suspect many well know folk are too old operate are trading on their reputation. This can have dire consequences for patients.
Fourth, if you need the name of a very well regarded neurosurgeon at MGH I can give you a name.
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