Does Anyone Use Bioidentical Aldosterone Instead Of Florinef?

[Annaliese]

bioidentical aldosterone has got to be better than taking florinef- what do people think? Anyone take it?

[anaphylaxing]

Is there such a thing? Is it regulated by FDA? I'm allergic to Florinef, so very interested in this!

[Annaliese]

http://www.tinnitusformula.com/infocenter/articles/treatments/aldosterone.aspx

"Bio-identical aldosterone is very difficult to obtain in the US so Dr. Wright enlisted the aid of a Canadian compounding pharmacy to supply it. He put Tom on two 125 microgram capsules daily. To monitor the safety of the therapy, Dr. Wright checked Tom’s serum electrolyte levels (potassium, sodium and chloride) monthly. He began taking aldosterone and nystatin as he tapered off the prednisone."

[Annaliese]

http://www.tinnitusformula.com/qtimes/2009/04/askbarry.aspx

"Interestingly, the FDA has banned aldosterone as a bio-identical hormone. This is very unusual as the FDA does not generally interfere with bio-identical hormone therapy except in extreme cases. Since aldosterone is a natural hormone and exists in everyone's body, it defies logic to ban a bio-identical product. Perhaps the answer lies in the fact there is a commercially sold synthetic analog of aldosterone called fludrocortisone. This synthetic drug is manufactured by Barr Laboratories and distributed under the brand name Florinef. There are many side effects of Florinef that do not occur with aldosterone and it has not been studied for its effect on SSHL.

Aldosterone can be purchased from Canadian compounding pharmacies with a US doctor's prescription. I suggest you have a hormone test for aldosterone; you may find you have a low level. You can get hormone tests from a compounding pharmacy in the US. If you do have a low level, you can ask for a prescription from your doctor."

[issie]

If you look up the article I wrote on Aldosterone and Renin - The Article - I called and spoke with a pharmicist who said that he would compound it if we could get a doctor to prescribe it. But, right now it's only used on cats. It's in the cream form and is rubbed into their ears. Now, whether he could really do this - I don't know. Not gotten any doctor to look into it. But, I found all that research on aldosterone and do believe there is a connection to our problems. It would by-pass the liver and not be so dangerous - in my opinion - for what that's worth. But, not sure that IS "the" answer. Too many other possiblities - but definitly plays a part.

Issie

[Annaliese]

Issie do you mean the article you posted a few weeks ago?

[issie]

I actually bumped that up - I originally wrote that about a year ago. Yes, it's in there with the phone number to the pharmacy.

Issie

[jangle]

Ill talk to my doctor about this. Although I doubt he'd prescribe it for me. Im not sure if it's safe though although I see no reason why it wouldn't be.

[Annaliese]

Discovered you can get it in Australia but its expensive.

[njwood60]

Discovered you can get it in Australia but its expensive.

Hi Annaliese

I'd be very grateful if you could let me know where in Australia you can get aldosterone. I've been measured with low aldosterone & my doctor has prescribed it but none of the compounding chemists I've contacted can get it. I'm in Australia.

Thanks heaps.

[POTSdad]

We will ask my daughter's gynecologist about bio-identical aldosterone. We live in Canada, so it should not be too hard to get. This gynecologist specializes in bio-identical hormone treatments by using creams. My daughter currently is getting progesterone this way.

My daughter currently is taking 0.05 mg Florinef in the morning, and 0.025 mg Florinef in the afternoon. For the most part, this appears to control Pots symptoms. If she takes anymore, she gets too thirsty at night.

I've wondered about the long term effects of taking Florinef, so I'm guessing the bio-identical form of aldosterone would be safer.

[Clairefmartin]

My friends Dad owns a pharmacy that does compounding in the US, I had asked about this a few weeks ago, this was the response:

"Hey Claire, He doesn't compound aldosterone because it is insanely expensive without much need. The precursors to aldosterone are not expensive though and should convert to extra aldosterone in your body. Progesterone being one of them...may I ask you a question? During the third trimester were you doing a little bit better? I know you were stuck in a hospital...no fun, but I am curious if you felt slightly better in your 3rd trimester than before you hit your 3rd trimester? My father said he would be curious about hormone levels, mineral levels and fatty acids that your body is producing. Thought I would ask. "

Thoughts?

-Claire

[McBlonde]

I'm starting to confuse myself about the Florinef I take. If I continue to be thirsty, crave salty things, and peeing out all that I drink, and still can't stand does that mean the Florinef is not working?

[Clairefmartin]

McBlond - has your BP mproved?

[McBlonde]

McBlond - has your BP mproved?

It still drops when standing and come to think of it..... I was already on Florinef when I was dx'd with POTS, too.

[issie]

If any of you try the bio-aldosterone - please post about it. This was one of my little babies that I did tons of research on. I'm really interested in your results.

Issie

[njwood60]

Hi all

For anyone in Australia who needs Aldosterone, I have found a pharmacy that will get it in. If you have been looking for a pharmacy that sells Aldosterone you can send me a PM for more information.

They are very keen to dispense as cheaply as possible without compromising the quality. They said that as the doasge is in micrograms, they need to use very strict quality controls.

Thanks.

Edited February 24, 2012 by MomtoGiuliana

[issie]

If anyone uses it, would really like to know the results in comparison to florinef and if the direct hormone is more beneficial since it doesn't have to be broken down.

[Annaliese]

Message me if you would like the oz pharmacy name.

[njwood60]

An old topic , but just an update that I have been using Aldosterone for 4 years and it definitely increased my blood pressure. I was dizzy on standing before I took it but most of the time I'm OK now. Also for those of you questioning whether you need Aldosterone, rather than just taking a precursor hormone, in my case I have to be very careful of the hormones I take as I have had estrogen receptor positive breast cancer, so I have to avoid hormones that can raise my estrogen. Aldosterone is perfect in my case as I just need my blood pressure raised - I don't need any other hormone effects.  I'm in Australia, and Australian doctors will prescribe it and there are now Aus pharmacies that will compound it.  pm me if you need the details

[Katybug]

Wow!  This is so interesting!  I never made the link of progesterone being a precursor to aldosterone. But, I get Depo Provera shots and I feel terrible without them and I feel terrible on other forms of BC that are a mix with estrogen. I assumed it was the estrogen making me worse. But what if it's the progesterone allowing my body to make more aldosterone? Putting this on the list of questions for docs.

[NatashaRedding]

I take compounded aldosterone. Initially I took Florinef which worked great for a couple of days and then brought on hypertension and foggy thinking. It was unbearable! Second I used large doses of Murray River pink flake sea salt to help my condition. It worked well but, I had to drink it a lot in water. I still use it religiously to support autonomic dysautonomia in the form of hypo-aldosteronism. Later, I found aldosterone on the internet from IAS (called Aldo-Pro). It worked great but, I needed so much of it that it was really expensive and delivery was horrendously unreliable!! Then, I contacted Dr. Stephen Wright's office at the Tahoma Clinic in Washington State to see where they get their aldosterone prescriptions filled because he is a proponent of using compounded aldosterone for hearing loss and Menieres. Dr. Wright's office referred me to Key Compounding Pharmacy in Federal Way, Washington. Until today, I have been using compounded aldosterone from Key Compounding Pharmacy, which has been over a year. During this time, I have slowly increased and adjusted the dose along with the support of my Naturopath, Dr. Maura Scanlan in Issaquah, WA.

I experience tremors in my sleep if I don't take this compounded medication. This is the only medication that has helped me to sleep and taken away my windedness; a kind of limp, exhausted fatigue, without the HORRIFYING side effects of synthetic aldosterone that I experienced with Fludrocortisone and Florinef. Compounded aldosterone has been a profound LIFE SAVER for me!! It's shorter half-life as compared to FLorinef and Fludrocortisone makes it much easier on the system. It's gentle and effective and has brought back a great deal of quality of life for me! I recommend it with all heart!

I slowly introduced it until subtle hypertension hit and then backed off the dose to just before the hypertension onset. My dose is 700-800mcg/day. I take 600-700 of those mcg in regular capsule dosing and 100mcg in time release dosing. It costs about $500/mo for these prescriptions. Since my dysautonomia symptoms are primarily in the very early morning hours when aldosterone should be at it's peak, I wake at 3 am and take my first dose of 300mcg regular aldosterone and 100mcg of time release aldosterone, and I wake again at 6 am and take my second dose of 300mcg of regular aldosterone. Then I only take an additional 100mcg around 9am a few days of the month during the luteal phase of my cycle as I notice when my progesterone levels are higher, I need more aldosterone support.

I am VERY sensitive to too much potassium and can have increase symptoms of dysautonomia if the potassium is not consumed along with sodium. I have also found amazing support in maintaining electrolyte balance by using electrolyte pills made for athletes. I use "Rapid Rehydr8" capsules and take one every morning. Currently, Key Compounding Pharmacy has announced that their sources for aldosterone has dried up. I am working with Pharmaceutical Compounding Inc. in Woodinville, WA to see if they can help secure another source. I have heard that aldosterone is more easily obtained from Canadian pharmacies. Does anyone have a pharmacy recommendation in Canada? It may have to become my new source. Thanks and Good Health to you all!

[issie]

Interesting Natasha.  Let us know if you find it. I couldn't use Forinef.  Hiked my already too high blood pressure and I felt horrible. Not something I plan to revisit. But me having low aldosterone and renin, at the kidney level, makes me wonder if this is a compensation or if it's an issue. I never got the compounded RX. The guy I was talking to got other employment and the other pharmacist weren't as eager to figure it out. So it got put on the back burner. Does it give you edema?  I already have too high sodium levels and don't need you hold onto more salt. My osmolarity levels are high and MSH is low.  Signs pointing to CIRS - of which I'm officially DXD with. Treating mold and biotoxins much in the forefront. 

 

Issie

[njwood60]

Hi Natasha

Great to hear you are doing well on Aldosterone. I think it is criminal that florinef gets prescribed before Aldosterone, it's just that the drug companies can't patent aldosterone so they're not interested in it.

I know of a pharmacy in Canada, that has it - pharmacysolutionsonline

also profound-products who I think are distributors

 

[NancyB]

Hi Everyone,

I get bioidentical aldosterone compounded for me in Canada.  I am currently taking it and have been for quite some time and just re-ordered some two weeks ago.   I will not post the information here, as it is not an approved drug by the FDA and so importing it is technically illegal.  However, I tried the legal route for approval and it was just unreal, so I just am a criminal, lol.  I believe that the US customs officials do not really care what you get (with the exception of controlled or illegal substances) from where, as long as you don't get a huge supply and will be selling it here and that it is only for your own use.  I wish they had the same rule for FDA approved drugs that people get from Canada now to save money for this compounded drug, but at this time they do not.  Just not the demand for bioidentical aldosterone, perhaps.  I do not know.  From what I read, lots of people have problems with Fludrocortisone side effects.

I had no choice but to get the bioidentical because the fludrocortisone makes me really ill.  And, I was not willing to try any of the other two drugs that do really weird things to your body, IMHO.  

I believe that the drug company that makes Florinef (generic Fludrocortisone) is in cahoots with the FDA to make sure that this drug does not get compounded in this country.  They have been the only game in town since 1957!!!  It is available as a compounded drug everywhere else in the world.  At least all the countries I have contacted or visited and inquired about it when I was there.  Those include Australia, Canada and New Zealand.  I actually visited the compounding pharmacy in Sydney in March last year and talked with the compounding pharmacist there.  I consult with my Canadian compounding pharmacist often by phone.  

I have to say that even the bioidentical is not without issues, since it has a very short half life (20-30 minutes),  everyone's metabolism and situation is different, and knowing how much to use and how often is very difficult to figure out for yourself.  But, it can be done.  However, if you have any autonomic issues with BP,  you get to be very tenacious and will figure it out for yourself.  Unfortunately, there isn't anyone that can help you with dosage and how often to take it because of the above factors.  

The pharmacy I visited in Australia needs a doctor there to write your Rx.  The one in Canada I use needs one from your US physician.  You should know, that the medication is expensive, depending on how much you get.  Plan on spending between $500 and $1,000.  I cannot say how often you will need to purchase it, cause it will depend on how much you personally need.  Aldosterone is expensive, so that is why getting the compounded version is high.  Start with 500-50 mcg. capsules and go from there as you titrate up.  Just to give you an idea, I take mine every 2 hours from 6 a.m. to 10:00 p.m.  There is another person who posted on this site that takes about what I do, 700-800 mcgs./day.  However, she titrates her's differently.  You may need a lot less than either one of us, but probably no more.  I do not know her medical situation.  I am treating Idiopathic Orthostatic Hypotension.  Technically, it falls into this website's definition of autonomic dysfunction.  

Update:  2-12-19:  I am still titrating up.  Taking a total of 1100 mcgs. of bio identical Aldosterone per day in divided doses the last two days now.  My mouth was less sore yesterday and less sore today.  I also was not awakened today by jitteriness at 4:00 a.m.  I am now taking 200 at 4:00 or 4:30 a.m.. then 100 at 7:00 a.m. and every two hours at that dose through 7:00 p.m.  Then, at 10:00 p.m. I take 200 to hold me from 10:00 p.m. until 4:00 a.m.   For some reason, my mouth, tongue, throat and often esophagus get really sore when I go up on the Aldosterone (or not on enough - who knows).  When I was looking for information on Aldosterone side effects,  I happened to find an article about Aldosterone and Addison's disease (written in 1954!!!).  There was one sentence in it that referred to another study that the Aldosterone altered the sodium/potassium ratio in some way.   So, I am having my sodium, potassium, the rest of my electrolytes and a bunch of the usual blood tests to see if anything is abnormal.  My theory is that my mouth, etc. get sore because the sodium/potassium ratio is off and one or both of those need to be supplemented, but I don't know.  I will report back.  I do know from past experience if my salt is too low, the first place I feel it is in my mouth - it gets very dry.  Always fighting that if I do not drink 2 liters of water a day. 

 

Edited February 12, 2019 by NancyB
Added an update.