florinef question

[tina999]

Hi all,

Ar, I know you are on 0.05 mg florinef once daily and that seems to have helped your symptoms-are you taking T4 at the same time?

Have any of you other guys tried the florinef or cortisone while taking the T4?

Jimlow , you said low doses of prednisone helped but high doses or none was bad.  have you tried folrinef and are you currently on the T4?

Juanita, I know you take armour.  Have they ever given you any steroid ?  Also I was wondering why they keep increasing your dose.  The fact that you adapt after two agonizing weeks is scary.  Do you then have bad hypo symptoms or are they just still trying to make the TSH level drop?

I go back into the new endo in the morning and I am trying to figure out what would be best to request.  I am going to ask for the florinef for sure but I am unsure if I should consider the cortisone/prednisone as well or just try the florinef alone.  

Most of my symptoms seem more aldosterone and he really wanted to know what you guy's drs were doing and if it was helping.  Last week he said we were headed off into unknown territory so he seems very willing to consider my suggestions, I just need to figure out what to suggest!

Thanks!

[tina999]

Hey Ar,

I found a JAMA paper that discusses people who have problems withdrawing from steroid treatment.  The author mentions that some number of them will give a normal result on the high dose ACTH stim test but fail some of the other more involved tests.   Email me and I will send you the link. ***@****

Today the doc put me on 0.1 mg of forinef.   We'll see how it goes.He wanted to use prednisone but was very concerned about it.  I asked for florinef and he just seemed confused.  He is so sweet though and is very open to ideas I have so am getting to direct my own treatment to a certain extent.  
Back to 12.5 ug of levoxyl!

[Catastrophia]

Hi everyone. I just joined the group because of my pain (see Catastrophia's Catastrophe)and God, I wish there was another way. I don't know anything about antibodies, and my dr. probably doesn't either. "it's all in my head because of stress and mood swings and depression, and all the catastrophic things going on in the world."I'll have to let you all educate me.

[tina999]

http://www.newtreatments.org/fromweb/licoriceconversation.txt

Hey jimlow, check this site out.  I can't look up the refs at the moment but it talks a lot about adrenal insuff and cortisol hypoactivity.

[tina999]

This paragraph from the above link seems very relavent to the types of problems we seem to have.  Some symptoms are shared and some are not but they both seem adrenal.  The long recovery time getting off the steroid is something my mother also has,  and Juanita says it take two weeks to adapt to the next higher dose of armour.  This really points towards a very, very slow response of the HPA axis to changes.


It has been consistently shown that CFS patients display
both glucocorticoid and mineralocorticoid insufficiently,
secondary to hypofunction of the hypothalmic-pituitary-adrenal
axis.  However, the degree of respective steroid insufficiency
might be very different between patients.  In other words, some
patients might have very slight glucocorticoid (cortisol)
insufficiency and, conversely, considerable mineralocorticoid
insufficiency; some others (such as you perhaps) might have the
opposite.  This hypothesis might explain why the
mineralocorticoid supplementation with Florinef was reportedly
resolutive in about 50% of CFS patients but ineffective in the
others.  This hypothesis, although likely, can only be
speculative because to date not published study dealt with the
issue.

[Jimlow]

Sorry, meant to mention this too, in regard to your reply about "crunchy/popping joints". I was VERY CONCERNED about my joints being noisey. I was concerned it meant joint destruction might be going on. I tested negative for R.A., Gout, ANA and ESR, so HAS TO BE part of the thyroid or adrenal problem. It is listed as a symptom of both! Ar, Shannon, SandyAnn and several others also have the "rice krispie" joint problem.

[meling333]

Hi Tina
They have never given given me a steroid the reason I have been rasing my dose is I started out at 15mg armour the smallest dose made in May. My freeT4 was .28 range .80

[ar1281a]

Hi Tina,

This is my story, I was put on prednisone due to an anaphylactic reaction. When they tried to take me off two weeks later, I ended up in the ER with what now seems like adrenal crisis symptoms (HR 140, tingling/numbness all over my body, couldn't move, low potassium, borderline low sodium, etc). At that moment didn't understand why, but my GP put me back in an even higher dosis of prednisone and longer. I had some symptoms of severe fatigue and headaches before the episode but didn't pay much attention to it. When I went to see my endo to check my thyroid as I had very fast heart rate and incredible "dizzy episodes" (could barely walk), hypotension and severre orthostatic hypotension, tingling/numbness in my arms and feet episodes. She decided to do the adrenal antibodies test as she said that a person w/one AI disease can develop another and a traumatic event like this one could trigger something else (my thyroid was checked three times within 3 weeks -always normal). The antibodies came back negative, she couldnt' do anything else due to the prednisone but didn't really think there was s/t else. Just in case a CT scan of my adrenals and an pituitary MRI were done, both were normal. We also explored the MV route and had an echo ordered by my new GP which I'm waiting the results for. So after I don't know how many blood tests (as no one could figure out what was wrong with me - I was tested for Lyme, mono, etc) my endo's theory was that the HPA-axis got screwed up due to the high dosis of prednisone (I was on it for a little bit over a month - they say some people are more sensitive, maybe due to an underline condition? who knows!) and decided to put me on 0.05 mg of florinef for a month. I started to see the difference within a week (they say that full effect can be seen after 7 days) and I'm feeling a LOT better. I still have some tingling/numbness and mild dizziness, but these episodes are farther away from each other. Still get mild headaches and pressure on my head. But it has def worked. In two weeks I'm supposed to go back, she'll evaluate me and decide what to do. She doesn't want to leave me on this drug for an extended period of time, but by then we'll see if the axis got better (and thus was the prednisone) or something else is going on that got worse with the prednisone. So you see now why I dislike prednisone. Maybe you could try the florinef while you get use to the meds dosis. Ah!! one last thing, I don't take T4, I don't have hashi, I have Graves. Hope this helps and pls let us know what your endo says. Drs out there should write a paper on all of us :-)

[Jimlow]

Hi Tina999, My Doc actually put me on the prednisone when my blood tests showed high thyroid antibodies and he thought a 15-day round of it might reduce inflammation and antibody levels. I did feel better at the lower dose but higher doses, elevated my BP/Heart rate too much. When tappering off of it, I had adrenal fatigue symptoms and serious mood changes, that lasted several weeks. All this time, I was on Armour (combo T-4 & T-3). My reason for researching about the adrenals is for same reason as you, I had adverse symptoms from the thyroid med but I battled through it and the symptoms settled down and I actually then finally had improvement of throid symptoms. My mental fog improved a lot (T-3 is supposed to help with mental function) and I had improvements emotionally, low moods improved. Where I still had/have problems is the orthostatic intolerance and times my vital signs slow too much. Resting heart rate is sometimes 50 BPM (always between 50 & 55, resting). Like Ar1282a, I get the numbness/tingling in my hands/arms but mine is always at night in bed, even if I do not lay on my arms, they do this, EVERY NIGHT. All of the forementioned symptoms I can live with, it is the intermittant spells of serious fatigue I have a hard time with! I do contract work sometimes phsyically taxing and this can cause the adrenal-fatigue reaction, as can mental/emotional stress. I did not use to have the stress-intolerance, this is why I feel it is adrenal/cortisol related. It is also related to the thyroid disorder but as mentioned above, it was the mention by thyroid med. manufacturers, of "Uncorrected adrenal cortical insufficiency", being worsened by thyroid med, that put me on this trail of research about adrenal, HPA Axis, Thyroid-Adrenal Axis etc...  I'm glad you all are in this search too, it is encouraging!