posted
OK, so I FINALLY decided to start taking the Florinef and HC to work on my adrenals....I am having HELL!
Saturday I took 2.5mg of HC and was in bed from an hour after I took it (noon) until yesterday morning........I felt it the instant it hit my bloodstream. I had a HORRIBLE rush of something....... Some on realthyroid have said it was probably a thyroid dump and suggested I go off the Armour for a bit. I haven't taken the HC since because I am scared to death of having another reaction like that. Is that normal?
I quit taking my Armour after Sat and started on 1/4 of a 0.1mg pill of Florinef yesterday and the same today. (no Armour either day). I am absolutely worn smooth out.
I did a ton of research and came up with the following that I should be taking, but there are some conflicting ideas on how much to take. I went and stocked up at the health food store.
If anyone can help, I would greatly appreciate it; I have broken down crying over all of this more than once the last couple of days because I know I need to take it, but am scared I am not going to be able to.......
These supplements and vitamins shouldn't interfere with what I am taking with the exception of taking the magnesium around the time that I take my Azithromycin.
I am taking 1cc of B12 every other day, but went ahead and bought some sublingual to take also.......I am wondering what the difference is in % of absorption?
I currently take 600mg of magnesium oxide, am finishing that up tonight and going back to magnesium citrate because I feel it works better for me, although I can't take near as much of the citrate as I can the oxide.
I also bought an additional calcium with magnesium.....1000mg carbonated and chelated mix, 500mg mag oxide and chelated mix
I got some vitamin C with bioflavonoids, and from what I have read 4 to 5000 mgs a day?
What is the recommendation on the pantothenic acid (B5)? I went ahead and bought it by itself in case what was in the B complex wasn't enough.
I bought a B complex also that has 100mg of B's 1,2,3,6 and 400mcg of folic acid, 100 mcg of B12 (1cc is 1000mcg so that is nothing to me), and 100 mg of pantothenic acid. Some research I have done suggests 200mg's a day and some says 300.
I haven't been frustrated like this in a LONG time..........any help is GREATLY appreciated....
-------------------- TL Posts: 365 | From OK | Registered: Jul 2007
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bejoy
Frequent Contributor (1K+ posts)
Member # 11129
posted
Hi Tiffany,
Is HC hydrocortisone/ cortisol (Cortef)?
I'm sorry, I don't know what Florinef is. Can you tell me?
How do you know you have adrenal insufficiency. Have you had a saliva or blood test?
The list of supplements you are taking for your adrenals is pretty significant. When my adrenals first went into crisis, a similar list of supplements brought them back on line within about three days.
Years later I had an adrenal crash, and have had much experience with hydrocortisone.
The rush could be high cortisol levels. What time of day did you take your cortisol. Was it a time of day when your cortisol levels could have been high. Most people do get highs and lows.
I'd take some pantothenic acid in addition to a B complex.
B12 sublingual works much better than the ones you swallow. Injections work even better for many people.
I'm sorry you are having such a hard time! I hope things even out for you soon!
-------------------- bejoy!
"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson Posts: 1918 | From Alive and Well! | Registered: Feb 2007
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posted
From what you said, I thought HC was Armour...but I never heard it referred to as such.
I don't know about all the B vitamins. I just know you need some with the B-12 and yes.. the injections are better than the pills or sublingual.
I have heard that some sublinguals are very good though!
How much Armour are you taking?
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
You want to take folic acid when you take B-12. My doctor has me use a liquid form of folic acid, called Folirinse, and I put a drop of it on each B-12 tablet.
I get liquid folic acid injected with B-12 when I get my IV's every other week.
I know injections of B-12 are better absorbed. But the sublingual does something, as my blood levels of B-12 went way up when I was just doing the sublingual.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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tailz
Unregistered
posted
I'm having a similar response to rifampin. I feel like I'm dying. My head has been pounding all day, I slept all afternoon (even felt dizzy laying down).
I have not eaten anything all day and the thought of food makes me want to vomit. I have to get my adrenals tested here soon - I have a slip for bloodwork and a 24 hour urine. I just can't think since starting the rifampin - memory problems, too - I can't remember anything.
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posted
rifampin killed off my adrenals completely along with lead/mercury poisoning. Totally kills off all thiamine (B1) which controls energy production, temperature regulation,causes beriberi sx et al I'm on injectable thiamine and will start liver extract injections when it arrives. Looking forward to getting out of w/chair I've been in since adrenals collapsed in 2003-4
Posts: 740 | From BC Canada | Registered: Mar 2003
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daise
Unregistered
posted
Hi tif,
You asked about the vitamin B5 (pantothenic acid) dose. It's about 660-700 mg a day, split in 2 doses. You can count what is in your multiple, too.
posted
HC is hydrocortisone.......a corticosteroid that the body produces naturally. I took 2.5mg Sat morning......haven't taken it since. I have been told that it is better to space out (up to) 20mg a day in four doses, and it is better to take a higher dose in the morning.
Florinef is another corticosteroid that the body produces; it helps level out the aldosterone, BUT taking it reduces cortisol which is why they want me taking HC.
I have only been taking 30 mg of Armour; but have been on thyroid replacement since 2000. I took synthetics until Oct 07.
I had bloodwork done and normal serum ranges for aldosterone are 7-30, mine is less than 1.
From what I have read,even though taking steroids of any kind is really bad for us lymies, that because it suppresses the immune system even more than what we deal with anyway, that we can actually feel better symptom wise; it just drags everything out,which I am not looking forward to, but oh well.
Plus, these two in particular are steroids that the body produces naturally, so they aren't supposed to be as hard on the system as steroids like Prednisone.
I must say the thought of getting much relief from all the B's is a very welcoming thought......that would be a blessing!
-------------------- TL Posts: 365 | From OK | Registered: Jul 2007
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posted
I also know that both of these are bio-identical, which should "help" but I am wondering if I will ever be able to adjust to both of them, or if I should just take the Florinef (same as Cortef) for now and supplement with all the B's and see if that helps since I had such a crappy reaction to the HC (hydrocortisone)?
-------------------- TL Posts: 365 | From OK | Registered: Jul 2007
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tailz
Unregistered
posted
I had a sky high level of aldosterone once, but they didn't know what that meant. Is starting rifampin going to mess up my blood tests? Because I have a slip here for bloodwork and a 24-hour urine to test my adrenals.
I have zero energy. I have not taken a shower in 2 days and my cat needs his litter boxes cleaned, so if I do have energy, he gets clean cat litter before I get a clean body. I don't care if it's gross.
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bejoy
Frequent Contributor (1K+ posts)
Member # 11129
posted
Tiffany,
Lots of people here do take hydrocortisone. I'm not sure about Florinef.
Lyme and lyme treatment can really knock down adrenal productions of these hormones that you have to have to fight infections. Sounds like you are on the right track.
I'm still curious about how you know you have adrenal insufficiency. Was it your doctor's opinion, or did you have anys test done? That could help us sort out a little bit more about what your reactions were from.
-------------------- bejoy!
"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson Posts: 1918 | From Alive and Well! | Registered: Feb 2007
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posted
Florinef is not the same as Cortef or hydrocortisone.
Florinef is an anti-diuretic. It keeps you from becoming dehydrated -- causes you to retain fluid.
Hubby took a low dose for a couple of years. Did not work real well for him. His sodium levels continued to run borderline low and when the med wore off at night he had to get up numerous times to urinate.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
I have complete breakdown of my adrenals - Addison's disease. I take both hydrocortisone and Florinef every day. If you have definitely been tested positive for adrenal insufficiency, the hydrocortisone should make you feel better, so I don't understand why it wiped you out.
Is the adrenal insufficiency making you tired? Did you feel more tired after taking HC? Did you get this diagnosis from an endocrinologist? I'm curious what test was taken.
Posts: 39 | From Massachusetts | Registered: Jul 2006
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posted
I take Cortef myself. It's really helped me. Couldn't tolerate the florinef though. It just made me ravenously hungry.
Are you sure something else didn't cause this reaction? I'd definitely call the MD.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
I was on cortef along with armour thyroid.
LLMD switched me to florinef (0.1 mg up to 2 pills a day). Stayed on armour thyroid.
Now I am getting ready to switch to midodrine (POTs issues) along with armour thyroid.
I have never heard of cortef and florinef together, but if that is what your doctor thinks...
I am sure he/she knows more than me.
My hair never stopped falling out while doing cortef and armour thyroid.
It did stop falling out on florinef and armour thyroid.
Now if I can just get a handle on these POTs symptoms.
Keep us posted on how you are doing, okay?
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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Itsy_bitsyone
Unregistered
posted
Unless you have a real sodium/potassium imbalance, I cannot imagine why you would be taking Florinef for adrenal fatigue. Sounds like your bloodpressure went through the roof. Thyroid dump indeed!!
It is rather dangerous to take unless you have addison's or other primary adrenal damage. I know its popular with some of the thyroid boards (been there, done that) but honestly, that kind of thing was why I left the thyroid boards years ago.
You're probably better off taking your armour and supporting adrenal function with good old fashioned vitamins and supplements. If I remember correctly, B complex, vit c, and even siberian ginseng for energy while you allow the good old glands to rest.
What you are experiencing is what a LOT of folks have gone through following the ill, while well meant, advice of other hypos.
I was euthyroid on replacement (levoxyl then armour) and having terrible hyper symptoms...all the time they told me I was just having backward symptoms and needed more armour. Add more armour, add hc to take more armour...yadda yadda yadda...what you will notice is that many of the long timers on these thyroid boards really aren't getting better...
'Gaining weight? Take more armour. Can't handle more armour? Take more HC. If that doesn't work, add florinef.'
Truth is, that is a scary practice. Anyone with addison's can tell you that balancing their meds, even under an endo's help, takes time and is frustrating and even dangerous.
I do not even treat my hypothyroidism anymore. My hypo improved immensely the first year on abx so I didn't need to...not its back but until I am sure it is going to even out (fluctuating tsh and frees), its a recipe for disaster to be hypo one day, extremely hyper the next, with no rhyme or reason.
Most people should not take this drug without a true adrenal failure disorder, no matter how popular a treatment it is. It is not for adrenal fatigue, it is for organ failure.
DOSAGE AND ADMINISTRATION Dosage depends on the severity of the disease and the response of the patient. Patients should be continually monitored for signs that indicate dosage adjustment is necessary, such as remissions or exacerbations of the disease and stress (surgery, infection, trauma) (see WARNINGS and PRECAUTIONS, General).
Addison's Disease In Addison's disease, the combination of Florinef Acetate (Fludrocortisone Acetate Tablets USP) with a glucocorticoid such as hydrocortisone or cortisone provides substitution therapy approximating normal adrenal activity with minimal risks of unwanted effects.
The usual dose is 0.1 mg of Florinef Acetate daily, although dosage ranging from 0.1 mg three times a week to 0.2 mg daily has been employed. In the event transient hypertension develops as a consequence of therapy, the dose should be reduced to 0.05 mg daily. Florinef Acetate is preferably administered in conjunction with cortisone (10 mg to 37.5 mg daily in divided doses) or hydrocortisone (10 mg to 30 mg daily in divided doses).
Salt-Losing Adrenogenital Syndrome The recommended dosage for treating the salt-losing adrenogenital syndrome is 0.1 mg to 0.2 mg of Florinef Acetate daily.
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posted
You need to check your vitamin D status...
Posts: 442 | From Biddeford, ME | Registered: Nov 2007
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dontlikeliver
Frequent Contributor (1K+ posts)
Member # 4749
posted
I've been on Cortef for about a month, 5mg once a day and I can't believe how much it's helping me. If I didn't improve any more after this, I'd be happy. I'm not on any abx either at the moment (since March 1st when I had bad reaction to Rifampin).
Posts: 2824 | From The Back of Beyond | Registered: Oct 2003
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jamescase20
Unregistered
posted
Cortef florif, nothing pills, nothing seems to help me either so far. Adrenal Fatigue, and Fatigued to Fantastic, I would read both, exp follow the 1st one.
Strangely, lexapro raised my choronic low morn 95.9 temp to 98.3. Strange I know, but all the T-3 and 4 didnt raise my temps one knotch. Go figure? I figure my new plan is strict adrenal diet, and NO nicotine alcohol or caffeiene, NONE, except green tea caf to stave off the caf withdrawl headache. Funny thing, I FEEL TERRIBLE TOO. Its GOT to be adrenals and depression combo, but from bug damage. Idk, gon back to bed. oh make sure you dont have an un-tx co.
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jamescase20
Unregistered
posted
I forgot to say too, sythtic vitamins are fake. They rob your body of much needed "co-vitamins". So, what I do is take a natural organic vitamin from new chapter organics. (mind you I dont get paid for endosrments) there just are very few truely organic vitamins out there. They are culured vitamins. They are grown. And then tested for content. I take swanson longevital 14 pills a day, thats what it says! and then I take 1 new chap organ. vita daily. Thats what I do. The missing co-vitamins like 5P5 B vitamins, are NOT in the fake made vitas, so you get SICKER and SICKER the more vita you take. Honest! Crazy, i know. Sad too. Some very high qual. fake ones add the 5p5 sswans.long. does, but thats the only one. But u cant trust a human being to "made a vitamin" buy a fake one for the mega doses, and a REAL culured GROWN vitamin with it, so you dont lose the co-vitamins. Dont beleive it? dont, read about this on the net. Do YOUR research, if you learn something else. LET ME KNOW!!! GET A CULTURED MULTI AND TAKE IT WITH A FAKE MEGA
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jamescase20
Unregistered
posted
sorry um, I found I was sleeping cont as I was treating the bugs (herx from you know where) WEll, I got a hand or wrist springy thing used to work out your wrists from walmart for 5.00 and used it in bed as I was too sick to excerise at all. Doing these wrist excerises actually helped me pull myself out. I am still quite sick, but getting on an adrenal based diet helped already. Going though nico and caf withdrawls now, but I know if I tough it out, I will be paid BIG. SOON. the book ADRENAL FATIGUE, and NATURAL HIGHS, and END YOUR ADDICTION NOW, really got me started,.
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heiwalove
Frequent Contributor (1K+ posts)
Member # 6467
posted
how does one get tested for adrenal insufficiency?
posted
Oh, TRUST me, you have it if you have or had lyme. hahah. sorry. Read the book adrenal fatigue, theres actually simple ways to "quick test" yourself. One way go to the dark, in a mirror look into your eye, suddenly flashlight into the eye directly. The pul should get smaller, in adrenal shot people, it gets smaller, then starts to occulate back and forth, basially because its out of corisone and it gets bigger as the coritonse drops, its giving the body all its got, and it dont even have enough for the EYE!!! Now, just imagine if you now got a life threatening illness and if you didnt suppliment with steroids, you DIE!!! No kidding! You get the saliva test (usually 4 cotton balls under tongue, in a 24 hour period) There are cheaper 1 or 2 checks, but if you never got the full day, get that one first. If you drink caf...better go on a holiday, for 2 WEEKS BEFORE the test. Then there is the urine test, and finally and the most def test, (exp too!) ACTH, I did do this test under insurance, I went BLIND when they tested me! That was my tipoff I would fail, and I did. My cort was WAY no response hardly at all. and now wonder, I HAVE LYME, and you duck didnt treat it. DUH. On the right track now, but I see now, I HAVE to do the adrenal diet and cortef maybe some Ts and such, ALL good things for the HIP AXIS.
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bejoy
Frequent Contributor (1K+ posts)
Member # 11129
posted
My opinion and experience on adrenal/ cortisol testing:
Look in the yellow pages for a compounding pharmacy. Call them and ask for the name of a doctor who does natural hormone therapy.
I think saliva tests are more accurate than blood tests, because they tell you how much of each hormone is bioavailable, and how much you have throughout the day.
I'd test for Cortisol, progesterone, testosterone, and DHEA.
You can go through your doctor for the test, or you can purchase one directly from the pharmacy without a prescription.
Some pharmacies have people who will interpret the test for you. If your levels are low, you will need a doctor to prescribe natural hormone replacement. Many good LLMD's are knowledgeable about this.
Great info and links on this thread!
-------------------- bejoy!
"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson Posts: 1918 | From Alive and Well! | Registered: Feb 2007
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posted
Just to rule out confusion on anyone's part, here is the following information. Like I said, I have been prescribed Florinef and Hydrocortisone, NOT Cortef.
Nonetheless, here is this to maybe help clarify for anyone:
Florinef Acetate (Fludrocortisone Acetate Tablets USP) contains fludrocortisone acetate, a synthetic adrenocortical steroid possessing very potent mineralocorticoid properties and high glucocorticoid activity; it is used only for its mineralocorticoid effects.
Hydrocortisone, a corticosteroid, is similar to a natural hormone produced by your adrenal glands. It is often used to replace this chemical when your body does not make enough of it. It relieves inflammation (swelling, heat, redness, and pain) and is used to treat certain forms of arthritis; skin, blood, kidney, eye, thyroid, and intestinal disorders (e.g., colitis); severe allergies; and asthma. Hydrocortisone is also used to treat certain types of cancer.
CORTEF Tablets contain hydrocortisone which is a glucocorticoid. Glucocorticoids are adrenocortical steroids, both naturally occurring and synthetic, which are readily absorbed from the gastrointestinal tract.
My temp is fluctuating all over the place right now, so it is hard to decide what is what at this point.
For those of you that asked about testing, I had an aldosterone serum test that came back really low (normal range 7-30, mine was less than 1). I thought I posted that, but maybe not......My LLMD prescribed the HC because taking the Florinef can cause low cortisol, which based on the physical tests that LLMD has done in his office (the ones jamescase20 mentioned), I already have low cortisol.
It does seem that most of us battle with this at some point, and just like we all respond differently to other meds, we do these as well. For those of you who do NOT have problems with this, PLEASE do what you can to protect your adrenals and help prevent this from happening.
-------------------- TL Posts: 365 | From OK | Registered: Jul 2007
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jamescase20
Unregistered
posted
Tif sorry, that BOOK ..adrenal fatigue says how to avoid it. But, my take is STRESS kills the adrenals. So does, False carbs (what typ american diet is) in other words, eat WHOLE grains only, REAL good protein, like chicken or fish. with EVERY meal. Even snacks. NO refined sugar. NO smoking, no drinking, no drugs, no no no!!! =) thats the way it is, I also suspect even abx tax the adrenals. But, hey, you got to do what you got to do. Let me know how its going, I feel terrible too. I cut back the caf, and DEF see a light opening up, but still in withdrawl mode, 3 days now, so too soon to tell.
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heiwalove
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Member # 6467
posted
okay, then i think i was tested already. i took the saliva test, and my LLMD prescribed bioidentical hormone cream to address my imbalances.
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Some on realthyroid have said it was probably a thyroid dump and suggested I go off the Armour for a bit. I haven't taken the HC since because I am scared to death of having another reaction like that. Is that normal?![[sleepy]](graemlins/sleepy.gif)
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