roxie60
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Adrenal Insufficiency Testing?
- Thread starter roxie60
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roxie60
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I am curious Ema if my Dr does indeed agree with what we think my dx is when I start getting treated how long till I can expect to feel better and weel enough to try and restore strength to my body and mind? I know this is only your opionion but I have ni idea what my epectations should be and with termination looming around the corner wanted to know if we are talking a few days or a few monhs? I'm thinking the later cause I know I have other issues but always said if I could have my energy back I could push thru the other symps and have some kind of life back.
roxie60
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I hate it when I lose a good post....argh and have to try and remember what I wrote, never as good the second time. I wish PR did autosave periodically
roxie60
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I had two good questions. Lets see if I can remember
For those dx with hypothyroidism and or AI and Addison's do/did (prior to treatment) you have some days where you had more energy and therefore more function and other days where you were bedridden most of the day. I'm trying to understand my experience if indeed I get dx with these. That has been the most maddenig is the inconsistency of daily life not knowing how much I can do each day.
Also, if indeed I get dx with these (still waiting on some blood test results) and I surmise based on the more recently accepted lab range values I suspect I have gone undiagnosed for years will being undiagnosed mean that I have permanent damage or can I expect a full recovery (whatever that means) with treatment? Do those diagnosed always have health problems, less function even after treatment if gone undiagnosed for years prior to treatment?
Can one flow between hypothyroidism and barely hypothyroidism? Reason I ask is I reported to Drs in Jan of thise year that I had about two weeks where I had more energy and even started to exercise but then crashed again. I happen to have a TSH test and it was 1.92 or near that. A lot less than what it was this past week. So January I felt better, could do a bit more and the past few weeks struggle to do much of anything each day. Is that a normal experience, does the thyroid vary that much (untreated) and thus cause such (havoc) variety in daily health experience? This is why is has been so hard to work, some day s I could push thru others I could bnot get out of bed.
For those dx with hypothyroidism and or AI and Addison's do/did (prior to treatment) you have some days where you had more energy and therefore more function and other days where you were bedridden most of the day. I'm trying to understand my experience if indeed I get dx with these. That has been the most maddenig is the inconsistency of daily life not knowing how much I can do each day.
Also, if indeed I get dx with these (still waiting on some blood test results) and I surmise based on the more recently accepted lab range values I suspect I have gone undiagnosed for years will being undiagnosed mean that I have permanent damage or can I expect a full recovery (whatever that means) with treatment? Do those diagnosed always have health problems, less function even after treatment if gone undiagnosed for years prior to treatment?
Can one flow between hypothyroidism and barely hypothyroidism? Reason I ask is I reported to Drs in Jan of thise year that I had about two weeks where I had more energy and even started to exercise but then crashed again. I happen to have a TSH test and it was 1.92 or near that. A lot less than what it was this past week. So January I felt better, could do a bit more and the past few weeks struggle to do much of anything each day. Is that a normal experience, does the thyroid vary that much (untreated) and thus cause such (havoc) variety in daily health experience? This is why is has been so hard to work, some day s I could push thru others I could bnot get out of bed.
roxie60
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I had read some this week where there might also be some genes that affect how well our thyroid and HPA axis functions. Anyone have those SNPs. If I can find that link I will post, I wanted to revisit what research has been done. I know there were some CYP genes involved.
roxie60
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Wow another reason not to goto Mayo Clinic for help - you're just not sick enough for us to do anything, see you back in a year if you survive life. Why dont they listen to patients and take what they report into consideration with the blood results. Good grief. Get your heads out of the test tubes.....we are people and we are sick no matter how many deviations dont fit with your clinical definition of illness. ARGH
http://www.mayoclinicproceedings.org/article/S0025-6196(11)60809-4/fulltext#cesec10
BTW much of their studies on thyroid are older than 2009. Are they (Mayo) still relevant??? That might be too harsh.
http://www.mayoclinicproceedings.org/article/S0025-6196(11)60809-4/fulltext#cesec10
BTW much of their studies on thyroid are older than 2009. Are they (Mayo) still relevant??? That might be too harsh.
roxie60
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this answers my question on if thyroid level can be ok one week or month and not the next. I thought the TPO comment was interesting since my TPO was in range but of course that was back in Jan when TSH was lower.
http://suite101.com/article/subclinical-hypothyroidism-a2257
.....The current recommended reference range for TSH is 0.3-3.0 mu/L.
TO TREAT OR NOT
Over the last three decades, physicians and researchers have debated the significance of SH and questioned the need for treatment. This is partially because few long-terms studies of SH exist, and considering the early TSH range, there's no way to estimate its true prevalence. Has the incidence of subclinical hypothyroidism increased since the 70s or have newer, more sensitive TSH tests and changes to the reference range made this appear to be the case? Furthermore, because symptoms wax and wane in autoimmune disorders, TSH levels might be elevated one month and normal the next. Patients with roller coaster results may have been told their suspected thyroid condition had resolved and sent home. Thus, a wait and see approach prevails among some practitioners.
Recent studies have confirmed this notion that patients with both subclinical hypothyroidism and hyperthyroidism can spontaneously recover. One recent study confirmed that SH can improve or resolve months or years after the initial diagnosis. According to this study, remission is not related to age, sex, or levels of thyroid peroxidase (TPO) antibodies. However, levels of blocking TSH receptor antibodies were not measured and they are often the cause of subclinical hypothyroidism.
Unfortunately, treatment is often withheld in SH despite a well-documented list of associated symptoms. These include: elevated lipid levels, cardiac abnormalities, depression, congestive heart failure, latency of motor nerve conduction, increased intraocular pressure, arthralgia, and cognitive changes. For years laboratory workers have noted a high incidence of cardiac events in ER patients with subclinical hypothyroidism but not subclinical hyperthyroidism. A recent study by Walsh, et al. confirmed that subclinical hypothyroidism, but not subclinical hyperthyroidism, is associated with an increase in fatal and nonfatal coronary heart disease.
A more provocative study would be a determination of how many cardiac events occur among patients waiting for their doctors to decide if treatment for SH is needed.
http://suite101.com/article/subclinical-hypothyroidism-a2257
.....The current recommended reference range for TSH is 0.3-3.0 mu/L.
TO TREAT OR NOT
Over the last three decades, physicians and researchers have debated the significance of SH and questioned the need for treatment. This is partially because few long-terms studies of SH exist, and considering the early TSH range, there's no way to estimate its true prevalence. Has the incidence of subclinical hypothyroidism increased since the 70s or have newer, more sensitive TSH tests and changes to the reference range made this appear to be the case? Furthermore, because symptoms wax and wane in autoimmune disorders, TSH levels might be elevated one month and normal the next. Patients with roller coaster results may have been told their suspected thyroid condition had resolved and sent home. Thus, a wait and see approach prevails among some practitioners.
Recent studies have confirmed this notion that patients with both subclinical hypothyroidism and hyperthyroidism can spontaneously recover. One recent study confirmed that SH can improve or resolve months or years after the initial diagnosis. According to this study, remission is not related to age, sex, or levels of thyroid peroxidase (TPO) antibodies. However, levels of blocking TSH receptor antibodies were not measured and they are often the cause of subclinical hypothyroidism.
Unfortunately, treatment is often withheld in SH despite a well-documented list of associated symptoms. These include: elevated lipid levels, cardiac abnormalities, depression, congestive heart failure, latency of motor nerve conduction, increased intraocular pressure, arthralgia, and cognitive changes. For years laboratory workers have noted a high incidence of cardiac events in ER patients with subclinical hypothyroidism but not subclinical hyperthyroidism. A recent study by Walsh, et al. confirmed that subclinical hypothyroidism, but not subclinical hyperthyroidism, is associated with an increase in fatal and nonfatal coronary heart disease.
A more provocative study would be a determination of how many cardiac events occur among patients waiting for their doctors to decide if treatment for SH is needed.
roxie60
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Ema
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I think you need to call another one. This is the time when an experienced lawyer can make the difference between success and failure as they will help make sure your file proves your case should you have to go to trial. Waiting until after I was denied was the biggest mistake I made.
Ema
Ema
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No, it doesn't matter. People with AI can get very skinny, yes, but once your metabolism shuts down all bets are off on what will happen to your weight. I lost 30 lbs and then gained 60.
Ema
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roxie60
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Only talked with the nurse last Tuesday before bld test. Have not spoke with Dr but left msg with her nurse asking for a sense of urgency in getting diagnosis. So no stim test ordered since still waiting on ACTH result. I wonder if worth doing a TPO now. I just want to scream, why do I have to be my own Dr, why are the Drs not requesting these tests??? Anyway I want to print off some articles about the new lab ranges and slip under her door this weekend so she can read and maybe realize what my problem is. She is wanting to send me to someone else at this point and that is frustrating to hear but she is out of ideas.
roxie60
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If there is a fatigue scale 0-10 (ten being fully functional, no fatigue) I have been between a 1-2 (0 being dead) the last few weeks. I am stuned at the inability to overcome and at least get something done. So frustrated and worried this will kill me before I can get anyone to help dx and treat.
roxie60
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I am so up set tonight. Just years of trying to find out what is wrong with me, having no confidence in Drs anymore. I am so tired of it all. Two weeks facing termination. How long does it take to look at these numbers and make a dx?
roxie60
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Just wanting to make sure I understand....my interpretation of all that is thyroid related labs so far is one can have hypothyroid but not necessarily have a high TPO (high TPO would show up when damage starts to occur)?
roxie60
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I can only imagine if there are others like me that have been sick on and off for many years the negative impact on their lives for lack of a diagnosis. It is incomprehensible in the 21st century that medicine appears so disorganized and operating in the dark ages. How can one tell various Drs how sick they have been for years and the Drs only go by what the labs are saying and ignore the walking lab that sits in front of them. If a diagnosis is a mystery at minimum Drs should look/listen to the patient and take what they are saying as having greater value than a lab created based on statistics from a sample group. My complaints have varied only sightly over the years, the main symptoms have not changed other than in frequency and/or intensity.
Good grief, we are individuals not robots, after a period of time Drs need to stop treating us like a statistic and start treating us as individuals. If an individual still presents for years then good grief start considering the possibility that this individual is not like the masses and may not fit neatly into the statistical lab averages. I have fought being ill for years, it has had a horrible impact on my life and is about to take a turn for the worse again (I'm no longer at the cliff's edge I am in free fall to the canyon floor and all I can hope for is a diagnosis so I can maybe have a soft landing instead of the impending hard crash to the bottom. That only ends well in the Acme comics). I know I am not alone in this experience but I am heart broken at the impact wrong diagnosis or no diagnosis (this is the one where they send you off and with no answer, maybe some new supplements and ask you to come back six months later hoping you report a miraculous recovery) has on a life and all the lives that life impacts.
Too many of us have been hard workers, participated fully in life to be relegated to the sidelines of life without much hope of getting answers but with the strength we have left we still seek answers that will fix these bodies that we in layman terms know are not functioning correctly. If they were functioning correctly we would not spend precious energy, time and funds seeking answers and Dr hopping. In my job we have performance appraisals, I believe Drs should also receive performance appraisals from patients, not from peers or medical boards who want to stoke each others egos, and they should be reviewed independently not to harass a Dr but to get through to them when they are missing the mark in their service to their patients. The results should be public not hidden or swept under a rug (in my opinion that is no better than priests who are hidden away after harming children only dealt with by the internal corporation that is the Catholic church). They are dealing with the public, the public should know the Drs record. I'm not suggesting that Drs are perfect and that honest mistakes are not made but there are Drs out there that have done harm and they should be vetted and removed from any chance of harming another person.
Every time a patient has lab work done the patient should receive a copy of that lab whether they ask for it or understand it, they paid for it they should get the results in hard copy or electronic. Let the patient make the decision not the DRs office. If you paid for a college education would you be ok at the end if the school just called you and said you graduated but gave you no physical proof, no certificate for you to use later in years as proof is that ever acceptable. This calling a patient and verbally telling them over the phone everything is ok is a pitiful and lazy practice. Most patients with chronic illness have no idea how helpful it might be years later to have those lab results for comparison.
Speaking of lab results, many of us know that government bodies are notoriously inefficient and fund sucking black holes, good grief CDC, of all the billions you spend on studies on mice how friggen much would it cost for you to make sure that lab ranges for various tests are standardized and verified to be consistent and up to date with current research. Instead many people go undiagnosed because Drs rely on labs as if they are the ultimate indication of a persons health when it appears the measuring stick that are lab ranges is a moving target. How is that even good science. I reviewed my mom's recent blood results last night, I have know idea who the lab is but is was the typical complete metabolic panel that is run by nearly all labs and yet between the two of us I dont think any of the lab ranges matched. That seem irresponsible, a hemoglobin test is a hemoglobin test, why in the the hell are the lab ranges different. So where I am out of range which might serve as diagnostically useful, her results were not therefore the Dr, physician's assistant or nurse practitioner reviewing our results would come to different conclusions. That should not be allowed, a Dr in Arizona should be able to look at my results and my mom's and be able to draw an accurate diagnostic conclusion regarding hemoglobin, the ranges should not be a moving target.
I need to take a break, my spirit is troubled by all this, maybe Dr Charles Stanley will have a word to restore my faith and hope.
Good grief, we are individuals not robots, after a period of time Drs need to stop treating us like a statistic and start treating us as individuals. If an individual still presents for years then good grief start considering the possibility that this individual is not like the masses and may not fit neatly into the statistical lab averages. I have fought being ill for years, it has had a horrible impact on my life and is about to take a turn for the worse again (I'm no longer at the cliff's edge I am in free fall to the canyon floor and all I can hope for is a diagnosis so I can maybe have a soft landing instead of the impending hard crash to the bottom. That only ends well in the Acme comics). I know I am not alone in this experience but I am heart broken at the impact wrong diagnosis or no diagnosis (this is the one where they send you off and with no answer, maybe some new supplements and ask you to come back six months later hoping you report a miraculous recovery) has on a life and all the lives that life impacts.
Too many of us have been hard workers, participated fully in life to be relegated to the sidelines of life without much hope of getting answers but with the strength we have left we still seek answers that will fix these bodies that we in layman terms know are not functioning correctly. If they were functioning correctly we would not spend precious energy, time and funds seeking answers and Dr hopping. In my job we have performance appraisals, I believe Drs should also receive performance appraisals from patients, not from peers or medical boards who want to stoke each others egos, and they should be reviewed independently not to harass a Dr but to get through to them when they are missing the mark in their service to their patients. The results should be public not hidden or swept under a rug (in my opinion that is no better than priests who are hidden away after harming children only dealt with by the internal corporation that is the Catholic church). They are dealing with the public, the public should know the Drs record. I'm not suggesting that Drs are perfect and that honest mistakes are not made but there are Drs out there that have done harm and they should be vetted and removed from any chance of harming another person.
Every time a patient has lab work done the patient should receive a copy of that lab whether they ask for it or understand it, they paid for it they should get the results in hard copy or electronic. Let the patient make the decision not the DRs office. If you paid for a college education would you be ok at the end if the school just called you and said you graduated but gave you no physical proof, no certificate for you to use later in years as proof is that ever acceptable. This calling a patient and verbally telling them over the phone everything is ok is a pitiful and lazy practice. Most patients with chronic illness have no idea how helpful it might be years later to have those lab results for comparison.
Speaking of lab results, many of us know that government bodies are notoriously inefficient and fund sucking black holes, good grief CDC, of all the billions you spend on studies on mice how friggen much would it cost for you to make sure that lab ranges for various tests are standardized and verified to be consistent and up to date with current research. Instead many people go undiagnosed because Drs rely on labs as if they are the ultimate indication of a persons health when it appears the measuring stick that are lab ranges is a moving target. How is that even good science. I reviewed my mom's recent blood results last night, I have know idea who the lab is but is was the typical complete metabolic panel that is run by nearly all labs and yet between the two of us I dont think any of the lab ranges matched. That seem irresponsible, a hemoglobin test is a hemoglobin test, why in the the hell are the lab ranges different. So where I am out of range which might serve as diagnostically useful, her results were not therefore the Dr, physician's assistant or nurse practitioner reviewing our results would come to different conclusions. That should not be allowed, a Dr in Arizona should be able to look at my results and my mom's and be able to draw an accurate diagnostic conclusion regarding hemoglobin, the ranges should not be a moving target.
I need to take a break, my spirit is troubled by all this, maybe Dr Charles Stanley will have a word to restore my faith and hope.
roxie60
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Another perfectly timed sermon, God's Stress Remover. In the sermon he reminded me that God is the great physician, everyone else is just practicing. I am stressing and trying to control things I have no control over (my Drs, my company,friends, family). That is not going to help me to heal.
Roxie, I'm so sorry that you are going through all this and wish I could help. Sending you good wished and prayers.
I can certainly relate to everything you are saying. Too bad those of us who have fallen through numerous cracks can't be put in charge of health care. After all, we know where the problems are and have ideas on how to improve things. We could probably save a pile of money doing it too!
I know you don't have the time or energy for this at the moment, but something I am finding very helpful is a Physiology course I'm taking right now. It is a free on-line course and it is explaining things like feedback loops (I see that mentioned here a lot) and ion channels etc. I thought if I had a better understanding of what some of these things mean I would get more out of the medical articles I read and some of the comments on PR. And be able to make more informed decisions. Even if I can't finish the course, if I just learn a few things that "stick" it will be worth the time and effort. So far I'm very pleased. And I am feeling a little more empowered already just knowing that I now have access to some of the education that doctors have.
I can certainly relate to everything you are saying. Too bad those of us who have fallen through numerous cracks can't be put in charge of health care. After all, we know where the problems are and have ideas on how to improve things. We could probably save a pile of money doing it too!
I know you don't have the time or energy for this at the moment, but something I am finding very helpful is a Physiology course I'm taking right now. It is a free on-line course and it is explaining things like feedback loops (I see that mentioned here a lot) and ion channels etc. I thought if I had a better understanding of what some of these things mean I would get more out of the medical articles I read and some of the comments on PR. And be able to make more informed decisions. Even if I can't finish the course, if I just learn a few things that "stick" it will be worth the time and effort. So far I'm very pleased. And I am feeling a little more empowered already just knowing that I now have access to some of the education that doctors have.
Ema
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TPO are a type of thyroid autoantibodies and can be a sign of autoimmune thyroiditis. This is the most common cause of hypothyroidism in the US today.
However, it is also possible to have hypothyroidism from other causes, most typically infection. And in this case you would be hypothyroid (typically subclinically but also overt) and have negative antibodies.
Ema
roxie60
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Lets say in the next couple of days I am able to convince my Dr that I am hypothyroid and whatever else. How does one who has a history of reacting to medications/supplements know what to take to treat hypothyroid? What treatment options are there and how long does it take to start feeling better, heal? I suspect I have been having problems for a long time but I will not know for sure until we try something. If I dont get better well I'm out of energy and ideas on how to help myself to health.
What is the proper way of treating? I have read in some cases if given synthetic T3 that can cause probs with the adrenals. Lizzy's blog mentions it takes time to figure out what works for an individual.
What is the proper way of treating? I have read in some cases if given synthetic T3 that can cause probs with the adrenals. Lizzy's blog mentions it takes time to figure out what works for an individual.