Spoke with my Doctor

BleepingBeauty wrote:But it's my b-day, and I'm not in the mood to start bleeping, so can we talk about this more at another time?

OK, BB, you know the expression, "Another Day, Another Disaster". But Life gives you a Bucketful of Challenges every day, not a Bucketful of Winning Lottery Tickets (which is NBD unless you let the buckets pile up).

In the Forced Vital Capacity maneuver, which is what you did up there Pre- and Post-Bronchodilator, the absolute maximum effort blowing out (as in "your eyes pop out of your head and roll onto the floor") must be maintained for at least 6 seconds to insure the lung is completely empty and get accurate measurements. As noted in the results, your expiratory times are 1.6 and 1.4 seconds, respectively, so all measurements involving expiratory times > FEV 1.0 (Forced Expiratory Time in 1 second) and FVC are inaccurate (the FVC is undoubtedly a little low).

Indeed, values like the FEF 75 and FEF 75-85% are "frivolous".

The good news is, since your FVC is probably a little higher, I don't think you are "restricted".

The bad news is, one of the measurements that measures "obstruction" (reactive airways), the PEF (Peak Expiratory Flow)(which may be accurate, depending on effort) is quite low. This is suggestive of smoking damage (or perhaps allergy).

Anyway, PFT is completely effort-dependent, and if you weren't coached to do this test correctly, then that value isn't accurate, either.

When the test is done correctly, perhaps the most important parameter to measure the damage caused by smoking will be the FEF 25-75%.

When you said you were seeing a pulmonologist for the OSA, I thought you'd be getting the PFT out of there, it never occurred to me that the PCP would be doing the test. Shoot.

Y'know what, get them in here to explain themselves. I mean, does anybody out there know what they're doing?

robertmarilyn wrote:I want you to know that the official real PFT test at a lab is sort of fun. The one I did had me shut inside of a big box and there were a lot of instructions I had to follow...

The small spirometers can be accurate for Simple Spirometry if the maneuver is done properly and the machine is operating correctly. However, this includes calibrating the machine daily, and as you can see, that thing hasn't been calibrated for a nearly a month (May 7).

However, to your point, mar, the Complete PFT, including Lung Volumes and Diffusion, would have offered BB important information (diffusion) and Muffy fodder for CompSAS discussion (FRC and, consequently, CO2 Reserve).

BleepingBeauty wrote:My PCP probably thinks I've become a hypochondriac

Show him this post. That might alter what he's thinking a bit.

Muffy

howkim wrote: I won my bet. The T3 Uptake is not your T3 level. It's used to calculate the Free Thyroxine index. The doc also ran direct T4 measures, but no direct T3 level. I find it interesting that your T4 levels are somewhat elevated, but your TSH is, too. There's supposed to be an inverse relationship between the two. Just FYI, one of the group of studies that came out of the NHANES nutrition survey found that generally, in folks without thyroid disorders and without known risk factors for thyroid disorders, the average TSH was about 1.5.

Why does the medical profession make it so difficult to get what you ask for? I had a feeling that this would be the result, although I was very specific in asking for a FREE T3 test, and the gal who drew my blood seemed to be on-board with exactly that.

riverdreamer wrote:Happy Birthday, BB!!!!!!!!

Thanks! That has to be one of THE cutest pictures I've seen in a long time! Are those chinchillas? I want one now.

Have fun today, and later when you are up to it, check out more about your thyroid. The Free thyroxine levels are just under the top of the range. My throid expert feels people who are treated with thyroid medication should have a TSH under 1. Your's, at 2.54, are a good indication that your T4 is NOT being changed into T3. T3 levels in the range you need would push that TSH lower. You probably need Cytomel, or something like Armour thyroid. So, when you feel like it, either ask the doc if he is willing to give it a trial, or see if you can get someone else to rx it. There is lots of good documentation that you could give him.

I need to read a lot more about this before I approach my PCP re: changing my meds. As I said somewhere in this thread, I think he thinks I'm going overboard w/test requests for no good reason. He sees my values as "normal," so I understand why he thinks what he thinks, but that doesn't help me if there really is an underlying issue that's not being addressed adequately.

Is it possible that better quality sleep and weight reduction could correct this? Or do my numbers indicate that I really do need to pursue this issue separately and more aggressively? Thanks.

Muffy wrote: The good news is, since your FVC is probably a little higher, I don't think you are "restricted".

Well, thank God for that...

The bad news is, one of the measurements that measures "obstruction" (reactive airways), the PEF (Peak Expiratory Flow)(which may be accurate, depending on effort) is quite low. This is suggestive of smoking damage (or perhaps allergy).

Well, either or both is possible. I've been smoking for a long time, but my allergy issues (I've never been tested; just going by occasional sneezing/itchy, watery eyes, etc.) only started when I moved out here to Arizona six years ago.

When you said you were seeing a pulmonologist for the OSA, I thought you'd be getting the PFT out of there, it never occurred to me that the PCP would be doing the test. Shoot.

I'm seeing the sleep doc on July 1st, and I'll bring this up to her again. I mentioned it when I met her, but I think she was more focused on getting a new sleep study done at that time.

Y'know what, get them in here to explain themselves. I mean, does anybody out there know what they're doing?

Apparently, not many. Muffy, you're like Allstate, and we all want to be in good hands. Is cloning possible?

robertmarilyn wrote:I want you to know that the official real PFT test at a lab is sort of fun. The one I did had me shut inside of a big box and there were a lot of instructions I had to follow...

The small spirometers can be accurate for Simple Spirometry if the maneuver is done properly and the machine is operating correctly. However, this includes calibrating the machine daily, and as you can see, that thing hasn't been calibrated for a nearly a month (May 7).

However, to your point, mar, the Complete PFT, including Lung Volumes and Diffusion, would have offered BB important information (diffusion) and Muffy fodder for CompSAS discussion (FRC and, consequently, CO2 Reserve).

Should I call the sleep doc's office and try to get a "real" PFT done before I see her on the 1st? Or should I wait until I see her and ask about it then? I don't want to be a pest, which is already a perceived issue with my PCP...

BleepingBeauty wrote:My PCP probably thinks I've become a hypochondriac

Show him this post. That might alter what he's thinking a bit.

Muffy

Wishful thinking, IMO. He already questions where my info is coming from and likely thinks that laypeople having access to the internet to research medical issues is a dangerous thing.

ozij wrote:BB, this is for you:

"Health at Every Size" Excerpts from Linda Bacon's book.
Please concentrate on you health and not on you weight. Concentrating on weight, and using it as a reinforcement makes us stop our healthy behavior when long term weight loss fails -- as it does for 95% of the population.

O.

Hi, O. I'm re-quoting this post because the excerpts from that book were truly intriguing and motivating, and maybe someone else who missed the link earlier will benefit from checking it out. I've ordered the book from amazon, along with two beginner Yoga DVDs. (I attended a Yoga class once, with a friend who was into it. The class was far too advanced for me, having never done it before, and the poses were a challenge because of my size, but it definitely sparked an interest.)

The DVDs I ordered sound like they're perfect for me, and they both enjoy very good user reviews. One is called Yoga for Couch Potatoes (which is out of stock at the moment), and the other is Yoga: Just My Size w/Megan Garcia (poses that are designed specifically for plus-sized women). The bonus is I can do them in my own home, rather than being in a roomful of Barbies and feeling like the odd-gal-out. I'm excited at the prospect of improving my breathing abilities and balance, not to mention the calming and relaxation benefits that Yoga is known for.

Thanks again for linking to Linda Bacon's book. I have high hopes for my future health and well-being.

O.

BleepingBeauty wrote: Is it possible that better quality sleep and weight reduction could correct this? Or do my numbers indicate that I really do need to pursue this issue separately and more aggressively? Thanks.

As far as better sleep and weight reduction, I am not positive, but I suspect it would not be enough to correct your body's apparent inability to convert T4 to T3. They may be contributors to the problem, though. Now, it is possible that when you get your T3 tested correctly, it will be in a good range, and your TSH is naturally at the higher end. But given your symptoms, I doubt it. Remember T3 is the active form of the hormone. You can have lots of T4 floating around your bloodstream, but if you do not have enough T3, you will still be clinically hypothyroid. For the majority of people, converting T4 to T3 works, and they are fine on a T4 medication like Synthroid or Levoxyl. For the people who have other issues impacting them, it is not enough.

The following is from treatment guidelines for treating chronic Lyme disease. When the inflammatory cascade is mentioned, this can occur for many other reasons than a chronic infection like Lyme. Allergies, smoking, insufficient sleep, and many other things can all contribute to an inflammatory state in the body, so this info is important for more than just people with infections. They are beginning to believe that diabetes is primarily an inflammatory condition as well, and that in some cases it may even be infectious in cause.

http://www.ilads.org/lyme_disease/B_gui ... _17_08.pdf
Items in parentheses added, bolding is from the original.

Activation of the inflammatory cascade has been implicated in blockade of cellular hormone receptors. One example of this is insulin resistance; clinical hypothyroidism can result from receptor blockade, and thus clinical hypothyroidism can exist despite normal serum hormone levels. This may partly account for the dyslipidemia (cholesterol issues) and weight gain that is noted in 80% of chronic Lyme patients. In addition to measuring Free T3 and T4 levels, check basal AM body temperatures. (low AM temps indicate low thyroid activity) If hypothyroidism is found, you may need to treat with both T3 and T4 until blood levels of both are normalized. To insure sustained levels, when T3 is prescribed, have it compounded in time-release form.

I have personally found I don't need the time release form, and do well with the less expensive armour, but everyone is different. Plus, you will have to decide on your own what is most important to pursue. I can't promise that everything will be better if you treat your thyroid properly, but I do know that a poorly functioning thyroid has major implications in the body. My point of view has been to track issues down, and follow them to the end, and then see what is left. If there are still problems, then I work on the next possibility. Complex health issues are just that: COMPLEX. nobody can follow all the tracks at once, so you have to prioritize, or you get crazy with it all. You can wait on tracking down the thyroid issues, if you decide something else is more important right now. But when you are ready, you will have some info to help out.

Glad you enjoyed your birthday greeting! I have to confess to ignorance of what they are, but I hoped you would like them.

riverdreamer wrote:

BleepingBeauty wrote: Is it possible that better quality sleep and weight reduction could correct this? Or do my numbers indicate that I really do need to pursue this issue separately and more aggressively? Thanks.

As far as better sleep and weight reduction, I am not positive, but I suspect it would not be enough to correct your body's apparent inability to convert T4 to T3. They may be contributors to the problem, though. Now, it is possible that when you get your T3 tested correctly, it will be in a good range, and your TSH is naturally at the higher end. But given your symptoms, I doubt it. Remember T3 is the active form of the hormone. You can have lots of T4 floating around your bloodstream, but if you do not have enough T3, you will still be clinically hypothyroid. For the majority of people, converting T4 to T3 works, and they are fine on a T4 medication like Synthroid or Levoxyl. For the people who have other issues impacting them, it is not enough.

Well, it sounds to me like I really should have the "real" Free T3 testing done. I don't think my PCP is open to hear that request, though, so I'll look into getting a referral to one of the docs listed on the thyroid-info.com site.

The following is from treatment guidelines for treating chronic Lyme disease. When the inflammatory cascade is mentioned, this can occur for many other reasons than a chronic infection like Lyme. Allergies, smoking, insufficient sleep, and many other things can all contribute to an inflammatory state in the body, so this info is important for more than just people with infections. They are beginning to believe that diabetes is primarily an inflammatory condition as well, and that in some cases it may even be infectious in cause. <cite snipped>

I'm hoping that my blood glucose numbers from my recent bloodwork are accurate. As I said earlier, diabetes is very present in my family, and I don't want to join that club. I'm pretty sure I've developed a few allergies since living here, I smoke, and I can certainly say I've had insufficient sleep. Sounds like this thyroid issue is something I can't ignore for long.

I have personally found I don't need the time release form, and do well with the less expensive armour, but everyone is different. Plus, you will have to decide on your own what is most important to pursue. I can't promise that everything will be better if you treat your thyroid properly, but I do know that a poorly functioning thyroid has major implications in the body. My point of view has been to track issues down, and follow them to the end, and then see what is left. If there are still problems, then I work on the next possibility. Complex health issues are just that: COMPLEX. nobody can follow all the tracks at once, so you have to prioritize, or you get crazy with it all. You can wait on tracking down the thyroid issues, if you decide something else is more important right now. But when you are ready, you will have some info to help out.

Good advice, thanks. My first priority right now is getting a good night's sleep on a consistent basis. To that end, I heard from the seller of the machine I recently purchased, and he was late in shipping it out to me. It should arrive by Wednesday. I don't expect miracles or immediate results, but having access to my data will finally give me the ability to see where I'm at and what I can change for the better, therapy-wise. Hopefully, that will come together sooner rather than later, and I'll be able to focus my energy on checking more thoroughly into this thyroid problem.

Glad you enjoyed your birthday greeting! I have to confess to ignorance of what they are, but I hoped you would like them.

They're just too cute! I've seen chinchillas on occasion (in pet stores), and that's what I think these adorable little guys are. If I owned one, I'd probably never want to put it down, because their fur is like buttah. Unfortunately, my cats would probably find them as irresistible as I do.

Thanks again, riverdreamer, for putting this info at my fingertips and explaining the particulars in a way that's easy to understand.

BleepingBeauty wrote:Should I call the sleep doc's office and try to get a "real" PFT done before I see her on the 1st? Or should I wait until I see her and ask about it then?

I think you should go back to the PCP's office and get a "real" PFT (spirometry will be fine if they do it correctly). What they're doing now is "nothing", and it's your duty to fix it so everybody else going there will be getting accurate information.

Muffy

Muffy wrote:

BleepingBeauty wrote:Should I call the sleep doc's office and try to get a "real" PFT done before I see her on the 1st? Or should I wait until I see her and ask about it then?

I think you should go back to the PCP's office and get a "real" PFT (spirometry will be fine if they do it correctly). What they're doing now is "nothing", and it's your duty to fix it so everybody else going there will be getting accurate information.

Muffy

This will probably make the top of your head pop off, Muffin, but the gal at the PCP's office who was administering my PFT didn't instruct me to take in a deep breath before exhaling as hard as I could into the machine. I specifically asked, and she told me to take in a normal breath when she gave me the signal, and then to exhale as much as possible. So that's what I did.

From my search of the term "spirometry," it seems a deep breath is required. I guess I'll be calling the office tomorrow to question them about a repeat, done the right way this time... Anything else I should know before I annoy my PCP some more?

BleepingBeauty wrote:This will probably make the top of your head pop off, Muffin, but the gal at the PCP's office who was administering my PFT didn't instruct me to take in a deep breath before exhaling as hard as I could into the machine. I specifically asked, and she told me to take in a normal breath when she gave me the signal, and then to exhale as much as possible. So that's what I did.

In that case, my original estimate of 75% inaccurate is increased to "entirely" inaccurate (but that FVC now looks to be even more promising).

Interestingly, if you saw what a normal "Flow-Volume Loop" looks like:



then looked at yours:



you might note that if you reversed both the "Flow" and the "Volume" axes:



you would end up with a normal FVL. Can you stand it? I mean, everything is backwards! And that's a normal spirometry? How do these FP find their way to work?

BleepingBeauty wrote:From my search of the term "spirometry," it seems a deep breath is required. I guess I'll be calling the office tomorrow to question them about a repeat, done the right way this time... Anything else I should know before I annoy my PCP some more?

Not only do you have to take in a maximal breath and continue the exhalation for > 6 seconds, you have to try to explode the whole breath out in the very first microsecond. The expiratory portion of the loop (the top half in the normal example) has to be crisp.

Muffy

Muffy wrote:

BleepingBeauty wrote:she told me to take in a normal breath when she gave me the signal, and then to exhale as much as possible. So that's what I did.

In that case, my original estimate of 75% inaccurate is increased to "entirely" inaccurate (but that FVC now looks to be even more promising).

Interestingly, if you saw what a normal "Flow-Volume Loop" looks like:
then looked at yours:
you might note that if you reversed both the "Flow" and the "Volume" axes:
you would end up with a normal FVL.

So my PF abilities look promising but, since this test was administered incorrectly, the results can't be relied upon. Good news and bad, as usual. Maybe one of these days, it'll just be good news...

Placing Muffy's usual clinical excellence aside for a moment...

It's nice to know that CPAP and SDB are not the only medical disciplines getting gypped by mediocrity.

Pulmonary function tests and thyroid free-T3 tests are getting short-changed as well. I'm so glad sleep-disordered breathers are not getting unfairly singled out...

-SWS wrote:Placing Muffy's usual clinical excellence aside for a moment...
It's nice to know that CPAP and SDB are not the only medical disciplines getting gypped by mediocrity.
Pulmonary function tests and thyroid free-T3 tests are getting short-changed as well. I'm so glad sleep-disordered breathers are not getting unfairly singled out...

I'm quickly losing faith in all of humanity....except you guys of course

BB, during my PFT, the instructions were given so explicitly and clearly, that I had no doubt exactly what I was supposed to do with every single breath and exhale I took. It was made very clear to me that things had to be done exactly a certain way for the test to be valid.

mar

robertmarilyn wrote: BB, during my PFT, the instructions were given so explicitly and clearly, that I had no doubt exactly what I was supposed to do with every single breath and exhale I took. It was made very clear to me that things had to be done exactly a certain way for the test to be valid.

mar

Hi, mar.

The gal at my PCP's office was clear, and I followed her direction. I just didn't know that she wasn't performing the test correctly, as I didn't know what to expect. Live and learn...

Hi Beauty:: In the midst of your medical quandaries you took the time to give me support and encouragement. I don't know exactly why, but your words gave me the POWER to leave my fears about my sleep study. A short time ago, we didn't know each other, but now your words became THE TERMINATOR to my worries about my sleeop study. You are an awesome support person Beauty.

[

SaltLakeJan wrote: What the heck happened to my sleep program that seemed to be working so well. Why has it vanished, leaving me either tossing & turning or getting up to read YET another chapter in my book? Why when this is Sat. night, and my sleep study will be Tues. night, have I had a light doze for 3 nights, instead of a refreshing night's sleep? I have two nights to get this worked out. Any suggestions to break insomnia, anyone?? Jan

Bleeping Beauty wrote: Hi Jan, I'm sorry to hear you're having difficullty with your new slelep hygiene regimen. As a layperson, I can offer two tidbits of infor/advice

2. You may be exacerbating the problem because you have a "deadline" in your mind re: your upcoming sleep study. Worrying about not getting enought sleep before the deadline is only going to make it harder to do just that. Perhaps something as simple as deep-breathing will help? Hang in there Jan, We're all rooting for you.

How right you were, I knew it, but until you wrote the words, I couldn't realize that was the block to my sleep. Beauty, iof I ever run into a jam again (and knowing me, I will ) I hope you will help me out as you did here. I want to support you. I am frustrated at the poor medical care you have received. I would like to march into your doctor's offices, and say, "Guys, you are dealing with a very special person. Get your act together. "

Mere words cannot fix what medical school did not impart. Perhaps he graduated from a medical school in an island far, far off the coast of a foreigh country. We have become so politically correcct, if I named a specific country, poor Johnny Goodman would get hate mail, that someplace we have never heard of, is being discriminated against. (oh well, this is a rant for another day) Today all we can hope for is that you get the medicare care you deserve.

Beauty, other than your inedequate medicare care, you are perfect in my eyes. Best to you and many thanks again.