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improving with dessicated thyroid but too low dose?
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improving with dessicated thyroid but too low dose?

hi there: started on 1/4 grain dessicated thyroid along with BHRT. already improving after 2 weeks, body temp has risen, less fatigued, baggy eyes starting to dissapear same with joint pains and skin is beginning to produce oil! I also have low cortisol in the am/daytime but this has been improving in the last few months. how long before I know if this thyroid dose is suficcient, because I still have not reached a temperature of 98. in the afternoons. but it definitely has risen since taking thyroid and bi-est + progesterone. pls advise if I should be asking doc to increase now or at what time in the future. I will see him in another 4 weeks time.. I suspect he only gave me such a low dose to see if adrenals could cope. apparently they are I feel much better, but not great yet. hands and feet still freezing.
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657231_tn?1390151580
Usually one needs at least 4 weeks after a thyroid change to do testing.

What adrenal testing was done? How is your sodium and potassium?
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Avatar_f_tn
I think my salts are ok, I was taking Real Salt 1/4 tsp 2x a day, I was peeing so much for a while and had gotten weird cramps, this has now resolved since its been a couple of weeks on the BHRT and thyroid pill.  I have noticed now that I started to sweat a little after my daily walks too, something I haven't been able to do for months.
so I think they are fine.
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Avatar_f_tn
oops forgot to mention adrenal testing was bloodwork, ACTH stimulation test and cortisol timed test.  I was low but had normal response with the injection. I think my adrenals are ok now with taking supplements for a while, and because since taking the thyroid pill my temps aren't fluctuating much, I dont drop much from activity, and I've hit 98 here and there, with an average of 97.8 - 98 in the mornings 3 days in a row. but its only been 2 weeks since starting therapy.  I just think the thyroid pill doesn't last all day, it seems after 6 -8 hours my temp goes down and I feel that weird air hunger.  
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657231_tn?1390151580
I am not sure what BHRT is?
The stim test is the gold standard for diagnosis - but one can be borderline - as in you can pass it, and still be ill as your adrenals are diseased but still functioning for now. Did you have an adrenal antibody test? What was the ACTH test and was it done properly? (chilled tube, spun immediately, processed promptly - otherwise the result is low from handling).

T3 has a very short half life and only lasts a few hours - so it should be taken several times a day. T4 pills last quite a while and so can be taken once a day. I take my T3 3x a day and my T4 once a day.

I asked about sodium and potassium as that would frequently (as in almost always) be abnormal with a low cortisol issue.
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Avatar_f_tn
BHRT= bio identical hormone replacement therapy.,  my adrenals are out of whack because of severe hormone imbalance. they are not diseased. I was overtraining and in denial of my hormone status, plus my GP ruined me by placing me on a very high dose of artificial hormones which made the imbalance even worse! Yes I had to go to a lab out of town to get the acth timed test as my local doesnt have the special tubes and freezing etc.  the Endo was a jerk.  she said I wasn't sick enough to treat.  so I went to a Hormone Specialist  who tested me and  I am now on bi est + progesterone and pregnenolone, plus dessicated thyroid. in 2 weeks I feel way better, I can even do a gentle cardio workout and I started sweating again, but I am keeping it easy/light for now. I am not completely cured, my body temp is still low at times, but doesnt' fluctuate as wildly as it did before I started BHRT.  I called the doctor who said it usually takes 4 weeks, so I'm ahead of the game. He will review my thyroid dose at my next appointment.  I may not need to stay on it, it was given to me to help make cortisol in the am because it has natural T3.  it seems to work so long as I take it around 3:30 am when I get up to go pee! I'm not sick, I'm Menopausal :(
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657231_tn?1390151580
So, what is the *first* or base problem - the menopause?

I don't really understand your condition well - and AI is a pretty much lifelong condition that never gets better. I would never be able to go off my meds.
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Avatar_n_tn
the doc i see says that he has never seen a patient do well on 1 grain of natural thyroid--all of his patients are on from 2-6 grains.  I had been diagnosed with central hypothyroidism and secondary adrenal insufficiency.  i failed my stim test about 3-4 years ago--(lost track of time)  but another endo pulled me off medication without testing---and then did a non-fasting blood draw, which showed normal levels--but a blood draw is just a snapshot of the moment.

the new doc did blood work first and i came back high, then a second blood test came back even higher---but a 24 hour urine test showed I was a  little low.  a physical exam showed that my blood pressure drops when I stand up and I had a slow ankle relex--not sure what it was called, but it is an indicator of low cortisol

He said that all my symptoms point to low cortisol, so he put me back on cortef, but it is only 20 mgs a day now instead of the 30 that I used to be on.  

Not exactly sure why my  stim test was so bad, could have been a couple of reasons, I guess, but regardless, I seem to not be producing quite enough cortisol, and am greatful for a doc that is treating ME instead of my blood tests---he uses them for reference.

Also, instead of armour thyroid, I am on something called NP thyroid.  The formula for armour has been changed twice over the years and more cellulose has been added.  This NP thyroid is what armour originally was.  When i was taking armour, I had to chew it, because of the cellulose in it, and it was chalky and nasty and stuck in my teeth----this stuff is sweet and I put it under my tongue and it slowly disolves.  

I'm at the age that menopause could happen any time, but I don't have a uterus anymore, just ovaries---so it is a little hard to tell what is going on in that department-- the doc just started me on progesterone, but I am taking it backwards from what most people do.  I am supposed to take it for 8 days a month---basically I take it for one week instead of 3 weeks like most people---and I take it when my breasts start to get sore---that's the only thing we have to base my cycle on.  It seems like most people take it during most of the month and stop the week of their cycle.

Don't know why he does it this way, but I figured I should follow his directions for now---plus, we haven't been able to get my sex hormones tested yet.  My DHEA was tested and it was below 10----it should be about 280 for a female---so when it gets back up it may take care of any others that may be imbalanced.

Don't know if I helped any--but I just thought I give you a little more info.  Personally, i think that rumpled is probably our resident "specialist"  she's beeen dealing with alot more for a longer time had had alot more testing done.
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Avatar_f_tn
thanks for your info. the doc has me on 1 grain now and it is doing the trick for now.  my body has been through so much and all of this would have been avoided if my GP would have given me the Thyroid pill (here in Canada its called Thyroid, made by Erfa)  when I complained last December of extreme fatigue, hair loss (including half my eyebrows) and feeling cold all the time (in between extreme hot flashes).  
I'm feeling better now and the bio identical cream (bi est + progesterone) is helping.  I felt amazing yesterday, on my 3rd day of a full dose thyroid I overdid it at the gym and went to a festival in the heat...today I am bushed and this is after 10 hours sleep...guess my Adrenals need more time...
thanks for your info. I'm glad you and I have good docs now.
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Avatar_f_tn
that's a good question.  I think its that I had low thyroid all along, untreated, which made menopause worse and led to adrenal fatigue at the time of menopause when my ovaries quit altogether. I had already been through menopause without a hitch I believed, apart from hot flashes, until the Ovaries quit their day job, the Adrenals where supposed to take over but were on "stress leave" LoL!  (I got married, my daughter started college and moved out, all that fun stuff.
now that i'm on Canadian Thyroid (recently upped to 1/2 a grain for now)  everything is improving.  It wasn't likely true AI,  although they are sluggish but how could they be that bad and 3 weeks after starting thyroid and hormones I am feeling 80 % like my old self already...I'm still taking Wilson supplements and this includes an herbal tincture with licorice, maca, ashwaganda and ginseng, but I only use it in the morning now, along with L tyrosine.  my hair stopped falling  out already! so, I think, for me, it was mostly Low thyroid which affected everything else.
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657231_tn?1390151580
Er, it does not quite work like that - ovaries don't just work during the day... the adrenals do secrete a precursor hormone - DHEA that does become either estrogen or testosterone, otherwise they have very little to do with the reproductive system. Adrenals do not fatigue - they can become diseased though. If you take replacements, they become suppressed. That is when they vacation - as they detect any cortisol in the blood and stop working and depending, they may not want to work again (so some people actually become AI after supplementation - after asthma, arthritis etc.).

Adrenals do react in times of stress - and release adrenaline and other hormones in short bursts. Cortisol is for stress (short term) and metabolism and other things and to wake you up and put you to sleep at night and runs on a schedule of highest in the morning and next to nothing at night - hence the lab has to change the levels by time of day. When that schedule is altered, the body cannot make bone or muscle properly - and people get more cataracts, bone issues and weak muscle, for instance. If the adrenal hormones stayed up, your BP would be through the roof - like it does/can for Cushing's - and the body gets destroyed.

Thyroid is another story... low thyroid is awful and takes a while to get back into sync.
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Avatar_n_tn
Have you had anything else tested?  I totally failed a stim test several years back, but blood serum tests more recently showed high cortisol--then a 24 hour urine test showed slightly low cortisol.  An actual clinical exam indicated symptoms of low cortisol.  However, I was producing almost no DHEA--my level was below 10---should be about 280.  I had been on DHEA in the past because it was low, but never this low.  I had a number of things thqt were out of whack---and I'm not sure you can really get your body back on track without knowing where everything is.

I'm supplementing several other things that were low, selenium, magnesium, ferratin, Vit D,.  i also know my copper is low, but I haven't had my zinc tested yet---and they work synergistically somehow, so I've got to know both levels before I do anything about either one.

I still haven't been able to get my hormones tested yet---but with low DHEA I'm pretty sure either my testosterone or estrogen or both have got to be low.

Also, I lose water periodically---in larger than normal amounts---I think there is something going on with my vassopressin occasionally---but I'm not sure how I test for that one.

I've got a pituitary issue going, I'm pretty sure.  My T4 and my TSH are on the low end together----not that I believe the tests are accurate---but I kinow they should at least be opposite each other.

There are an awful lot of things that can and should be tested when you are dealing with endocrine issues.
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Avatar_f_tn
I agree with you on the testing but I'm dealing with a GP that has no idea what to do and wants to give me anti depressants and thinks everybody has CFS, so she refers me to an Endo who a) refused to test anything apart from stim test, and when I passed that she wrote me off as "not sick enough to treat". and b) the only Hormone Specialist is 200 miles away and is not covered by our Provincial medical plan so I have to pay cash, so far I have spent 750 bucks, but he's helped me a lot.  
Frankly I am worried that going back to work after a 4 month absence may make me feel worse, although I do have one or 2 days a week where I feel almost normal.  but then yesterday I went for a 45 minute bike ride, broke a sweat, and today I am paying for it big time... Hot flashes every 20 minutes and zero energy...but my body temp is hovering around 98.2 so this is very good as compared to March when it was 95.6 at the best of times!
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Avatar_n_tn
I was pretty ticked at the last endo I saw.  He immediately pulled me off 30 mgs HC and dropped it to 20--which mnade my arthritis and atopic dermatitis flare.  I talked to them several weeks later and they said it was probably a normal reaction, and that I was supposed to lower my Hc again in 4 weeks---unless my arthritis didn't improve.  They also mentioned that the doc would probably take me off thyroid once I was off the Hc completely.  the doc did all this without doing any testing of his own on me.

When I finally made an appt to go back in i mentioned that they had left me hanging without telling me when to call back and not making me an appt,. They said I had missed my 6 week follow up.  They had never told me they had set up an appt. for me.  My daughter was with me and she confirmed that we had left that office without them making me an appointment..

I guess they made one, but forgot to tell me because they didn't have a bathroom in their office you could use, so we had to go out in the hall and use the bathroom----I guess that it why they never told me I had an appt.  They claimed they gave a reminder call---but I never got one.

They did a cortisol blood serum test, without me fasting and a TSH before my appt.---they refuse to do a T4 and a T3, even though i requested them.

Two days later, I saw a PA, not the endo--no one told me i had a choice and didn't have to see the PA.  she tole me that they could do a stim test any time of day, so without me fasting, and using a 2 day old non-fasting blood cortisol level---and not drawing an ACTH level, they injected the stim angent about 11:30---after a 3 hour drive to their office----adn then did one draw 30 min later---and told me I was done.  

I asked where the PA was because I had some questions--she had gone to lunch.  I asked the nurse if they were going to run any othe tests, she told me NO.  I said, "even if I am having symptoms?".  I was told that they were only checking my presenting symptom.

I didn't go into that doctor with any one particular presenting symptom---I guesss they decided what my presenting symptom was.  my diagnosis from the previous endo was central hypothyroidism and secondary adrenal insufficiency and she had also listed at one time that I had multiple endocrine issues.

The doc never told me if I needed to stay on the DHEA----when it was finally tested in march it was below 10---I think the doctor really screwed up.  They had a patient relations department at the hospital--they were hospital affiliated.  i called and complained.  I told them they did not folllow protocol for the stim test and refused to test anything else that i requested and that they refused to return my call--said the doctor would call me--i asked when, and was told he was a busy man.

I didn't have to pay the bill, and I was told there would be a medical revue on the doc as to whether or not his treatment of me was appropriate.

Endocrinologists are notorious for not keeping up to date on the most recent info.  i've got a link I can send you, if you want--but I will have to wend it to you in a PM--not sure we can post a link to things on the board.
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Avatar_f_tn
When your cortisol is low for a long time your Aldosterone levels are whack and this also happened to me.  I was craving salt real bad too. yet I always thought salt was bad and i avoided it.  I bought some Real Salt (thats the brand name, it comes from Utah) and started taking 1/4 teaspoon in a small amount of water 2 or 3 times a day.  this did not raise my blood pressure, and it really helped.  I confirmed with the Hormone specialist it was the right thing to do. Lately I have been craving avocadoes and bananas.  guess what. they contain potassium.  I just got my results back, I am now ok in sodium but was low in potassium! I think I will listen to my body more from now on, it tells me what I need!
Oh, and good luck with your complaint.  I am in the process of composing a detailed letter to my Endo that screwed me by not taking my concerns seriously and missing an obvious thyroid condition , she made me suffer for months unecessarily and I don't want her to overlook another classsic case like mine!
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657231_tn?1390151580
Sodium and potassium work in tandem.  Salt in large amounts is bad for normal people - but for those with low cortisol - we need more salt as we usually cannot retain sodium so we need more and most of us need an extra medication, florinef, to retain sodium.

I do know some of my friends have more potassium issues. In a classic AI issue, most drop in sodium and spike in potassium, but some drop in both. I drop in both. I usually go for V-8 or tomato juice to keep mine up.

I looked at Real Salt - it is sea salt - which is wonderful - it actually contains less sodium than processed salt - but tastes great. I use a lot of sea salt for the taste. I use it on everything. I also use salt tablets when I need to raise my blood pressure - as mine is low.
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Avatar_n_tn
Hey gals, what exactly is considered low blood pressure?  i saw somewhere that somebody was saying they were low  and they said their blood pressure was 100-110 over 60-70.  i thought that was a good blood pressure.

My cortisol has been really low before and it has also tested as high, at least according to what my doc feels is appropriate---it was still within the normal ranges for the lab, but my physical symptoms point to low cortisol.  At this point I am going to trust my doctor and see how things work out.  I am still in the process of raising my thyroid dose, and was told not to expect to feel any improvement until at least a month--but that is only on one grain---which never made me feel better before.  i am supposed to raise it to 2 grains after a month.

I am on 20 mgs of cortef---I have heard that at this dosage you will not have a problem if you were to stop it---although I am guessing my arthritis would probably flare alittle. Is this right?

My potassium and sodium seem to be maintaining at appropriate levels.  My aldosterone is also at an appropriate level.

I'm not sure what makes me "flush" water occsionally.  When i had my MRI onmy pituitary, it showed no disease.  The endo told me that sometimes some of the cells just quit working.  I have also read that sometimes it can only affect one hormone, and sometimes it can affect several.

I am not making enough DHEA--it was right around 10---doc said it should be around 280.  I haven't been able to get my sex hormones tested yet, but I am guessing with my DHEA so low, that either my testosterone or my estrogen, or both, are bprobably pretty low----since DHEA is the precurser for both of them.

My testosterone was low in the past, but my estrogen was fine, with the exception of one really high surge--that never happened again.

Years ago, when i started having bladder issues, my family doc said something to me about syndrome of inappropriate anti-diuretic hormone secretion--or something to that affect.  When my bladder is really sensitive, I drink a tsp of baking soda in water and it almost always helps.  but, when it flushes,  i am peeing every 15 to 20 minutes and I am going alot, it is not just a feeling of having to go and then there hardly being anything there.

someone said that maybe i am just having ocassional bouts of problems with vassopressin since i seem to have some sort of ituitary problem.  She mentioned that a nasal spray of desmopressin would stop my body from flushing water if it was being caused by my pituitary.   I don't have diabetes insipitis (SP?)  but my body ocassionally acts like it does.

any thoughts on this?
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596605_tn?1369950227
I have DI. Mine is intermittent. Along with peeing, I am very thirsty when it is acting up. It is not questionable that I have DI. The thirst and peeing is not normal and can be all incompassing. I have found that in my case, my DI is more intense when my cortisol level/dose is higher. For me, when my DI goes away it is a sign that I need to up my H/C dose a bit. I am one of those folks who tries to take exactly the amount of Hc that My body uses and not a mg more! RE low blood pressure I think being lower than 105/65 consistently is what is considered low. When you have DI and AI there is overlap in symptoms. I am anal about getting lab checks of my sodium and K. Luckily I'm not too bad of a waster and just being generous with my table sea salt use keeps me in check. I have adrenal glands but don't make much ACTH. So I really think that pit pats have it a lot easier when it comes to our AI.
Horselip
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657231_tn?1390151580
DHEA is a contributor to the sex hormones - but the main source of the hormone is still your ovaries or testes (and the loop being with the pituitary - LH, FSH to the E and T).

For a while I had ovaries and no adrenals - not an issue hormone wise - then lost my ovaries, now I have no source of E or T...

I do think the DI can come and go - I think I go through a couple of stages too - I just get crazed and then it ends. Thankfully not often.

Mmm salt... yum.
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Avatar_n_tn
the gal that I know locally that has a son with DI told me the same thing---she thought that since I have what appear to be pituitary issues of some sort, that i could have DI that comes and goes occasionally.

Do you gals do anything to treat it when it happens?  I have also read that sometimes your heart rate going up for a period of time(stress maybe?)can cause it to happen.

When it first started years ago, I used to get the thirst with it.  In more recent years, I don't get the thirst with it.

Rumpled---are you telling me that My testosterone and estrogen could still be fine---regardless of what my DHEA is?

What is low DHEA going to do to me---what kind of symptoms could it be causing?

also, I just emailed my doc with some questions and he asked me if I felt like the cortisol was helping me.  I haven't felt any better since I started any of my meds or supplements---but I've only been taking them for about 2 1/2 weeks---he had told me I would probably not feel the effects of the thyroid for at least a month---and since I am only on 1 grain, which never helped before,  I really don't expect to feel any improvement until I move up to a higher dose, anyway.

How should I expect to feel to know if the cortisol is doing me any good? Is it going to do me any good if i am still too low in as number of other things.

I am thinking that if I am so low in several key vitamins and on such a low dose of thyroid that I can't really expect much of anything until these things get up to a more optimal level.

The only thing that I can definitely feel a difference in is the increase in my body's level of Vit D.  when I was only 33, my bones hurt---I felt like i had shin splints when you pushed on my shin bones.   I started supplementing Vit D before this doc ever tested me.  The new testing showed I was up to 47.4, still not up to where I should be, but a definite improvement----and the pain when I press on my shin bones is a whole lot less than it used to be.

This confirms to me that getting things up to an optimal level must really be helpful----I just don't know what i can really expect to hope for.  I don't want to expect too much if I am never able to feel as good as I would like to---but I don't want to expect too little, and not continue to pursue things that could improve more.

From all testing I have had done, I do not appear to have any obvious autoimmune issues, everything seems to be endocrine related---i do have some environmental allergies and i seem to be sensitive to chemicals----and I have anxiety and depression----but I sounds like some of these could be related to the endocrine issues.

Right now my sex drive and libido are struggling---which is difficult on my marriage--but I do my best in that department---it's not totally bad---but once again--it sounds like thyroid, cortisol, DHEA, testosterone and estrogen can all play a part in affecting that part of my life.

Why does this have to be so complicated??!!
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657231_tn?1390151580
I would get your E and T tested as well as LH and FSH tested not just DHEA - just getting one does not show the whole picture. You could be low in all.

In reading papers about DHEA in people with no adrenals, they give it back to those who have adrenals removed as it restores more subtle things like feeling better, mood and libido (sound familiar?).

Too much causes sweating, acne and high testosterone symptoms...

Hormones are complex. I don't have anything for the DI - I never catch it for the doc.
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Avatar_n_tn
How would you catch it for the doc?
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596605_tn?1369950227
The way to catch DI for your doc would be to have then order an ADH lab test or water deprivation test. Then when you are symptomatic go into the lab and have it tested. The Water dep test would have to be set up at a special place as a nurse needs to be with you the entire time. so it could be hard to make an appt for this if you are not dumping water all of the time.

I take DDAVP in a very small dose at night. Peeing a lot could be other things too, like Diabetes Mellitus. many with partial DI find that DDAVP will shut down the kidneys for several days and put you at risk for becoming overhydrated. If you are having sleepless nights because you are peeing every 30 minutes to a point where your sleep is affected then I would push for testing just to have it ruled in or out.
Horselip
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Avatar_n_tn
I'm hypoglycemic.  The dumping only happens occasionally---but it has been going on for years.     I kind of figured it would be hard to test for since it only happens randomly.  I read somewhere that sometimes something that makes your heart race can cause this to happen---stress maybe?

I always have to pee alot--but there isn't very much there---i just have an overly sensitive bladder.  When I have the dumping thing---my blader is full about 15 -20 minutes after i pee---and it will do this a number of times over  an hour or two and then stop.
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