I am not sure which community to put this question in, since deoxycorticosterone is "steroid hormone produced by the adrenal gland", and precursor to aldosterone, so here it goes.
I saw endocrinologist in October as suggested by my GYN/OB, dermatalogist, PCP to see if i have endocrine issues, apart from hypothyroidism. One of tests he ordered is deoxycorticosterone.
My result is 38 ng/dL, equivalent to second or third trimester pregnancy, except I am not pregnant. Um?
The reference range are:
Follicular: 1.5 to 8.5 ng/dL
Luteal: 3.5 to 13.0 ng/dL
1st Trimester: 5-25 ng/dL
2nd Trimester: 10-75 ng/dL
3rd Trimester: 30-110 ng/dL
The doctor says he does not see any issues with pituitary or adrenal according to other test results, and only abnormal he see is high deoxycorticosterone and low DHEA.
Information i see online are confusing, to say at least. the doctor order it because I have hypotension. From what i read, higher deoxycorticosterone mean higher blood pressure?
I was on Florinef(0.1 to 0.2mg)/Atenolol(12.5mg) daily for about 7 years until recent, I stopped it to see how my body reacts because I have myriad of other symptoms. I read about side effects of long term use of Florinef, and wonder if it may have cause some of my other symptoms. I am 33, soon to be 34.
Florinef is synthetic for aldosterone, and would Florinef raises deoxycorticosterone level? If not, what causes deoxycorticosterone to rise?
I take florinef - and so I am familiar with it. The biological half-life of florinef is not that long - in fact, if you are very symptomatic, they prefer that you break up your doses during the day as it does not last that long. I have been on it for about 7 years myself but I don't have adrenals and use it to replace aldosterone so I will be on it forever. I also use salt to raise my BP.
As for Deoxycorticosterone, that is a test I have never had (wow!) and I looked it up. The whole renin - aldosterone axis is complex IMHO - I always have high renin and that *should* mean I have high BP yet mine is er, not. I tried to get my doc to explain to me why but I could not twist my mind around it... so I am going to fail at this question!
Given your symptoms - sounds like a mineralcorticosteroid issue - I would see a good endo that knows these issues - like a neuro-endo who can test you more. Do you have POTS?
Um, interesting, I do fits POTS symptoms, except I don't have tachycardia. I have significant bradycardia instead. I had tilt table test, and they say I have textbook neurally mediated syncope or neurocardiogenic syncope. I passed out within a few minutes of starting the test. I saw the chart, my heart rate went nearly flat. No abnormalities were found with my heart itself.
My cardiologist allow me to take 0.1mg once or twice a day as i feel like, especially during the warmer weather. I also rely on high salt diet and salt tablets. They work well for my postural hypotension, that is until this year.
I had presyncope or syncopes incidents since I was a little, but they occur once in while. Then summer of 1999 illness, it happens too way frequent along with myriad of other symptoms.
This year, of course i feel much worse(fatigue, physical/muscle weakness, skin conditions, mental), and doctors(PCP, GYN/OB, dermatalogist) couldn't put their fingers on it. I was taking 0.2mg daily, plus salt tablet, and even more craving for salt than usual.
I saw endo this past October, as suggested by my PCP, GYN/OB, dermatalogist. I think I do need to find different endo. He couldn't answer the questions I just post. He tells me to stay on medications (Florinef/Atenolol, Synthorid) "as is", and thinks I am entering early perimenopause because he has no other explanations for my current symptoms or why i am not feeling better. *sigh*
My GYN/OB and reproductive specialist both independently say I am not entering perimenopause according to my FSH/Estradiol level (repeatly tested), tests endo didn't ordered at all. My GYN/OB first thought is adrenal insufficiency when she saw low DHEA on bloodwork, but left diagnosis up to endo.
I look up Florinef, and found long term use side effects. This is what i found, you probably are familiar with it.
Side effects of long term use of Florinef including:
• headache, dizziness, muscle weakness, fatigue, susceptibility to infection, sodium/water retention, difficulty in sleeping, depression, unusual weight gain/loss,
• raised blood sugar, low blood potassium level,
• changes to the menstrual cycle
• joint/bone pain, decreased bone density and increased risk of fractures of the bones
• hyperpigmentation, acne, bruising, hypersensitivity skin, thinning of skin
• adrenal suppression
• glucocorticoid withdrawal-lethargy, postural hypotension, nausea, headache
After stop Florinef/Atenolol 8 weeks ago, surprisingly, two things I notice right away, my blood pressure "feel" better(it does not feel like it is dropping) and also less intolerance to cold temperature. Postural hypotension/ presyncope or graying out is not as strong as it was while taking Florinef/Atenolol although it happens a little more often now but my body is respond to it better now-heart is beating more faster and stronger, and the blood flow doesn't feel like it is draining from my head too much. I am not sure if direct related, but my skin seems to improve? I will see my cardiologist, Friday to discuss about it.
Right now I am not on BCP, Zoloft, and Florinef/Atenolol at the same time for the first time in ten years. Some of my symptoms actual got better, others just persists or worsen.
The kicker is i am supposedly hypothyroid too-I am trying to verify the diagnosis right now. I am not sure if i have primary hypothyroidism, I suspect it may be secondary hypothyroidism.
I don't know if sythnoid, BCP, SSRIs, and other medications I took may have interacts, masking symptoms, or create new set of symptoms, or alter the blood levels to the point it appears I don't have such issue(s) or make it looks like I have different issue(s).
I will see neurologist in January because I am starting to have neurological symptoms again after having them the last time during 1999-2002 as they abate on their own. The summer of 1999 illness was never really identified, only damages it left in its trail, because I never had proper medical attention-thanks to "imbecile" doctors, and health insurance bureaucracy & red tapes.
I just don't want piling up medications to control vary individual symptoms. I wanted to get down to the roots, and work form there.
neuro-endo, I am not sure where to find such specialist, any idea?
In which doctor forum should i post the very question "Florinef is synthetic for aldosterone, and would Florinef raises deoxycorticosterone level? If not, what causes deoxycorticosterone to rise? "
A neuro-endo is at a pituitary center - look for a university center, large hospital and sites that list pituitary. We have some of them here in our health pages. You can still hit some duds - but they tend to test more and have more training.
Totally agree on the meds and pile of - but did you go off all of them at the same time? So are you sure which one made you feel better to go off? There is currently no endo covering regular endocrine items - there is a thyroid doc but not sure about his coverage on this topic in reality.
By skin improving - what do you mean? Were you having side effects from the florinef? A lot of those are the corticoid symptoms - not really the mineral-corticocoid action if that makes sense?
Are you hypopituitary?
Gotta love that salt! I have all sorts of different types and carry sea salt in my purse... :) And tablets too of course.
No, I did not go off various meds at the same time. The idea is to see what changes-To do that I'd go off or go on meds one at a time.
Yes, it is possible some of symptoms i experiences were corticoid, not mineral-corticocoid action.
Yep, I did felt better in some way when I went off Florinef/Atenolol. I visited my cardiologist today.
He agrees there is something else going on in my body, but the question is what. He is fine with me off Florinef/Atenolol for now, as along as I make sure I increases my salt intake for time being.
He doesn't know if Florinef increases deoxycorticosterone. He doesn't believe it to be the case, but he couldn't be sure about it. Still, he say it looks like sign of adrenal being under stress, and produces too much deoxycorticosterone. That would led to higher blood pressure and perhaps Cushing's which he doesn't think I have since I don't have typical Cushing's symptoms.
Hypopituitary-the endocronologist I visited two month ago rule it out, but I don't think he knows what he is doing. I do fits some of hypopituitary symptoms, so too adrenal insufficiency. So I don't know where to go from here.
You have to go to a large university center to find a good neuro-endo to get a decent doc - and you may have to visit several.
There are other issues - aldosterone related - and so they are more difficult since most docs have not a clue even what aldosterone is - and it could be a combo issue as well which makes it more complex. Cushing's can be a horrid thing - episodic ones can make symptoms come and go and some doctors refuse to think hormones cycle (er, period anyone?) and you can swing low to high and have both sets of symptoms!
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