Help Please! Sodium level keeps dropping, anyone else?

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Help Please! Sodium level keeps dropping, anyone else?

Postby Poly » Sat Jun 30, 2012 12:06 pm

I am hoping this group can help me unravel a mystery that apparently began for me after Squibb brand Florinef was taken off the market in 2007. Apparently, my pharmacy had enough available such that I was not aware production had stopped -- nor was my doctor, for some reason -- until 2009 or 2010, when I began to experience constant problems with low sodium, typically in the mid-120s. My hydrocortisone levels always appear to be correct because ACTH levels and blood pressure are normal. My doctor would have me increase my fludrocortisone, which I always assumed was a temporary measure. I would take two 0.1 mg. tablets, my sodium would increase to normal, I would eventually feel that I was retaining fluid and cut back to what had always been my "normal" dose of 0.1 mg. -- one tablet -- as it had been since 1972. At my next checkup, my sodium level would be strangely low again, and the entire process would repeat. The change from brand to generic appears to be the root cause of my low sodium levels, but if it is, I can't believe I'm the only one of us that has had to double my dose. Even if I begin to feel slight edema, I cannot maintain a proper sodium level unless I take 0.2 mg. daily of generic, rather than 0.1 mg. Florinef. I am now taking both in the morning to ensure that I don't forget the second pill that I was taking midday because my sodium was 125 again last week.

My questions for everyone with primary Addison's: Has anyone else had to increase as much as double your generic fludrocortisone levels since you began taking generic? Has any of you seen a mysterious drop in your sodium level in the last few years since having to move to generic from brand Florinef? Your responses will be very helpful because I can't figure this out; perhaps I have something else happening that is lowering my sodium level.

Thanks in advance for your help.
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Re: Help Please! Sodium level keeps dropping, anyone else?

Postby gkardel » Sat Jun 30, 2012 8:46 pm

Others have had problems with the generic florinef. If the timing is consistent with low sodium levels and switching to generic florinef, that's the most likely cause. That being said, there are other factors that can cause low sodium - diuretic use, hypothyroidism, vomiting, diarrhea, and cirrhosis are some.

There are several manufacturers of fludrocortisone. Try to change brands if you can.

You mentioned that "hydrocortisone levels always appear to be correct because ACTH levels and blood pressure are normal". ACTH level should not be used to guide cortisol replacement dose.


-Glenn
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Re: Help Please! Sodium level keeps dropping, anyone else?

Postby Poly » Sun Jul 01, 2012 5:46 am

Glenn,
Thanks for your reply. I didn't realize my pharmacy might be able to get other brands; I'll try that. It helps to know that others have had similar issues.

Could you elaborate on not using ACTH levels as a guide for cortisol replacement use? I do use hyper-pigmentation and how I feel, but what labs should be used by my doctor?

Also -- new subject -- do you know of any comprehensive list of regular blood/urine testing we should all be having with Addison's and type 1 diabetes (and hypothyroidism)?

Thanks.
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Re: Help Please! Sodium level keeps dropping, anyone else?

Postby gkardel » Sun Jul 01, 2012 4:05 pm

I think ACTH and hyperpigmentation should only be used in very general terms to guide cortisol replacement. If your ACTH level is many multiples of a "normal" ACTH level and you have symptoms of low cortisol like fatigue, then you have a strong argument that you need more cortisol replacement. The body's response to cortisol replacement varies between individuals. Cortisol replacement with the currently available meds is marginal. ACTH levels also vary through the day and can be impacted by stress that you may be experiencing at time of the test. Most would be over replaced if they took enough cortisol replacement to get their ACTH in the normal range. Not having a definitive blood test to guide cortisol replacement is one of the big challenges of adrenal insufficiency.

Blood Tests:
Type 1 diabetes: daily blood sugar testing, A1c, microalbumin/creatinine ratio in urine, lipid panel, CBC with diff., complete metabolic panel, vitamin D
Hypothyroidism: TSH, Free T3, Free T4
Addisons: sodium and potassium (in complete metabolic panel), renin, ACTH

-Glenn
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Re: Help Please! Sodium level keeps dropping, anyone else?

Postby NJ » Mon Jul 02, 2012 8:57 am

Many people have problems with fludrocortisone generics...I prefer Barr which is a yellow oval. Some who used the old pink Merck florinef like the Barr, saying it is similar. It is my personal choice...and I request it from my pharmacy.

One very useful article from a few year back states the ACTH is not useful as a test for Addison' s treatment unless there is obvious hyperpigmentation , in other words not for monitoring replacement dosage. One friend had elevate ACTH and her endo wanted to increase her hydrocortisone but she felt well replaced and refused...so many things could affect the test. I agree that using the ACTH to adjust dosing would result in over replacement in absence of hyperpigmentation.

Jo
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Re: Help Please! Sodium level keeps dropping, anyone else?

Postby Poly » Mon Jul 02, 2012 11:30 am

Glenn and Jo, thanks for very helpful information. Jo-- it's interesting that most people are happy with the Barr generic, because that's what my pharmacy has had since Florinef was discontinued. It has really surprised me that I apparently need double what I needed with Florinef, but apparently that's what it going to take.

Glenn, one more question about tests if I could...my current endocrinologist never does a 24-hour urine microalbumin. I asked about it, and she said that was the older way and that the random urinalysis done provides enough info on microalbumin. The m/cr ratio is calculated, but I have not had the 24-hour collection with creatinine clearance blood test in many years; is that how your and others' endocrinologists are handling testing? I like this doctor for many reasons, but I'm concerned because she rarely performs a physical, checks my feet, etc., unless I say I would like it done.

Thanks!
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Re: Help Please! Sodium level keeps dropping, anyone else?

Postby SueM » Mon Jul 02, 2012 12:57 pm

Squibb brand Florinef was taken off the market in 2007.??????

Not in the UK it hasn't. I have always used Squibb Florinef.
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Re: Help Please! Sodium level keeps dropping, anyone else?

Postby NJ » Mon Jul 02, 2012 1:35 pm

The original Florinef (USA) was made by Squibb (sorry about my brain fogged memory in the earlier post) but was sold to King but their product was not the same as the old pink Squibb. The UK still had Squibb and still do but wasn't it reformulate a couple of years ago? The US only has generics now...no name brand. King stopped making the name brand Florinef.

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Re: Help Please! Sodium level keeps dropping, anyone else?

Postby SueM » Tue Jul 03, 2012 2:43 am

NJ wrote:The original Florinef (USA) was made by Squibb (sorry about my brain fogged memory in the earlier post) but was sold to King but their product was not the same as the old pink Squibb. The UK still had Squibb and still do but wasn't it reformulate a couple of years ago? The US only has generics now...no name brand. King stopped making the name brand Florinef.

Jo

Hi Jo,
from what I understand yes it was reformulated. It's a small white tablet, which has to be stored in the fridge. I've not known any different as it took for ever and a day to get it prescribed. Kept being told I didn't need it! Odd how I now have normal BP and skin colour again since being on it for not to sure how many years.
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Re: Help Please! Sodium level keeps dropping, anyone else?

Postby NJ » Tue Jul 03, 2012 5:10 am

I had trouble getting it, too! Ridiculous isn't ? So many see such an improvement in their quality of life with fludrocortisone. Glad it helped you so much.
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Re: Help Please! Sodium level keeps dropping, anyone else?

Postby gkardel » Wed Jul 04, 2012 9:07 am

my current endocrinologist never does a 24-hour urine microalbumin. I asked about it, and she said that was the older way and that the random urinalysis done provides enough info on microalbumin. The m/cr ratio is calculated, but I have not had the 24-hour collection with creatinine clearance blood test in many years; is that how your and others' endocrinologists are handling testing


The random test is enough to identify albumin in the urine. 24 hour test is done if other kidney issues and/or a more detailed analysis is required.

Foot exam, nerve sensation test with monofilament, reflex tests should be part of your diabetes doctor appointment .


-Glenn
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Re: Help Please! Sodium level keeps dropping, anyone else?

Postby Poly » Sat Jul 07, 2012 8:08 pm

Thanks Glenn!
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