Surgery and Cpap – sharing my experience

[Slinky]

Yep, yep. I don't want to have to rely on the nurse(s). What if one of the other patients codes or takes a critical turn??

[LinkC]

What if one of the other patients codes or takes a critical turn??

Don't hold your breath...

[DreamStalker]

DreamStalker, since they've found nodules on my right thyroid lobe I've been reading up about this. Plus my mom had a benign meningioma on her parathyroide, surgery, radiation, etc. which also killed her thyroid.

You take thyroid medication for the rest of your life. Sometimes it can be a bit tricky finding THE right dosage, etc. Others take to it like a duck to water w/the first dosge tried.

The sad part is that FDA has seen fit to take "dessicated" thyroid off the market. I think that's the correct term for natural thyroid vs the synthetic thyroid meds like Synthroid, etc. Many, many people who have had their thyroid removed had much better luck w/the natural thyroid vs a lot of adjustment problems w/the synthetics.

Hmmm ... I would not like to take drugs for the rest of my life if I can at all help it.

So these "dessicated" thyroids, are they the ones being surgically removed and laid out in the sun to dry?

[Slinky]

I don't know. I haven't gotten that far into it yet. If you want I'll check my bookmark for the thyroidectomy patients forum. You can read the posts and ask questions yourself. But you can't live w/othyroid supplementation when they remove your thyroid. Didn't they tell you that yet?

Good'un, LinkC!!! Good luck w/your surgery!!

[Kickthefog]

Thanks again everyone. My pleasure sharing info. I'm glad it is sparking some good conversation and info for all of us.

Dreamstalker: As Slinky says, you can live without your thyroid only if you replace the hormone that the thyroid produces. Be interesting to hear what you learn Slinky becuase i was told that i had no choice at all and that the synthetic (syntheroid) was THE only choice. Now, they did say that you do not want to switch more than once becuase your body will adjust and get used to it. So they may have told me that becuase i was told that the natural hormone may not be availble going forward and they were possibly afraid that i would adjust to that and THEN have to switch again to the fsyntheroid and have issues, becuase as you say, nothing beats the natural hormone. So i bet they figured... get me used to the fake stuff that will always be availble.

Taking the pill every day is no big deal as long as you don't forget it. i forgot it once already and boy i knew it by about 2:00 in the afternoon. you get hypothyroid which is a bunch of symptoms but basically, for me anyway, is like a truck ran you over. I wasn't "right" for several days after my levels normalized again. You have (or at least i have to ) take it at THE SAME TIME every day and honeslty, i have felt pretty darn good. So don't be too scared of the pill thing. ifIyou HAVE TO, it really is no big deal. its like eating.... if you forget, your body will remind you later and you might feel crappy but you will survive and feel much better after a good meal sets in. The only real drawback other than the above mentioend is that a pill is ONE LEVEL of hormone in your body and thats it. Where your thyroid would adjust the level based on what you need. So although i haven't really experienced it yet, i'm told that there will be days of unexplained "oddness" to the way you feel. not horrible but just "off" and that may be due tot he levels being contant rather than variable like your body desires. who knows... i had no choice at all being cancerous so it was take the pill or "check out". funny how some decisions are very easy to make!
Pat

[Slinky]

Yes, that pill once a day does seem a small price to pay to be alive, Pat, and I'm really happy for you and your family!!!!

That is why I was quite firm after the FNA results that we will just monitor every 6 months via ultrasound since the biopsies were benign. I'll live w/them until the symptoms are so miserable they make its removal seem worthwhile.

Proceed slowly, DreamStalker. Best wishes and good luck!!!

[Mary Z]

Pat, I am hypothyroid and take levothyroxin. As far as the importance of taking the pill everyday and at the same time everday, nothing like experience. I had someone tell me her doctor advised taking it on an empty stomach, prior to other meds, and also to take it with distilled water. I don't go as far as the distilled water, but taking that pill is the first thing I do every day before (30 minutes) my other meds.
Mary

[Slinky]

Oh, oh. I don't do ANYTHING at a regular time ANY day!!! I'll be in a world of hurt if it comes to that!!!

[Slinky]

A google search brought up a lot of info on dessicated thryoid. Armour Thyroid is the one I best remembered. It is dessicated porcine thyroid. Quite a few people are getting theirs from Canada. Or a compounding pharamcy. But your script has to be VERY exact, and in grains, not milligrams.

[Muse-Inc]

Pat, thank you so much for sharing your experience! Now, I know to ask when they will be using to paralytic and how they will deal with my need for my equipment in recovery...trusting someone else to monitor my breathing is a very scary thought, guess I trust my APAP more than a person

I hope you're well into recovery now and taking the dang levo or Synthroid is now habit. Took my mom at least a yr to get close to the right dose; she's hypo.

[Kickthefog]

Pat, I am hypothyroid and take levothyroxin. As far as the importance of taking the pill everyday and at the same time everday, nothing like experience. I had someone tell me her doctor advised taking it on an empty stomach, prior to other meds, and also to take it with distilled water. I don't go as far as the distilled water, but taking that pill is the first thing I do every day before (30 minutes) my other meds.
Mary

Yeah Mary, my doc told me the same, as well as my Pharmacy. Emtpy stomach, and they said 60 minutes before anything else. I do about 45 minutes and so far so good. i never heard of the distilled water thing. like you, that does seem a tad overboard to me.

Pat, thank you so much for sharing your experience! Now, I know to ask when they will be using to paralytic and how they will deal with my need for my equipment in recovery...trusting someone else to monitor my breathing is a very scary thought, guess I trust my APAP more than a person

I hope you're well into recovery now and taking the dang levo or Synthroid is now habit. Took my mom at least a yr to get close to the right dose; she's hypo.

Glad the info helps you Muse. yes indeed, crazy as it sounds, its alot easier to trust the machine because it will do as exactly as we expect, consistently, everytime. Can't say that for many people.
Pat

[Mary Z]

Pat, I know how important this pill is, more for you than me. It''s interesting about these Doctors different opinions on when to take it and how. I have never seen anything in my literature about levothyroxine that says take it alone. There is no warning on my bottle (with my fosamax they are very clear about taking it before every other med and staying upright for at least 30 minutes prior to taking any other pills). DIstilled water would be no problem, I use RO water for my cpap and could pour a cup of that to take it. I guess since my blood levels are fine what I'm doing works as I'm consistant.
If an hour is the norm I'm going to have to start getting up real early to take all my meds. The funny thing is if you're in the hospital there is no way to take your pills right, as no nurse has time to come back an hour later and give you the rest of your meds, unless you luck out and get someone who considers you and adult and trustworthy as far as finishing the rest of them off an hour, 45 minutes later.
Is there a pharmacist is the forum? I just called mine who said 30 minues before you eat. Has having the mass removed made any difference with your Ai and AHI?
Good Luck on your continued recovery.

[Mary Z]

By the way, is coffee considered "food" if it's taken with cream and sugar?

[howkim]

I have never seen anything in my literature about levothyroxine that says take it alone.

The closest I've seen is the statements in the Prescribing Information (the stuff that's in the Physicians' Desk Reference - PDR) that says that taking levothyroxine with food decreases the absorption to about 40% (relying on memory here - not a good thing). Also, there's medical literature available that such supplements as calcium and iron really do a number on absorption, too.

it's just easier for me to be consistent if I take it when the cats wake me at oh-dark-thirty to feed them. I go back to sleep for an hour or so after.

By the way, is coffee considered "food" if it's taken with cream and sugar?

Yes. Not to mention the research out there that coffee by itself inhibits levothyroxine absorption. That's one reason why I take my thryoid the way I do. I GOTTA have my coffee in the morning!!

[Kickthefog]

I have never seen anything in my literature about levothyroxine that says take it alone. There is no warning on my bottle Has having the mass removed made any difference with your Ai and AHI?
Good Luck on your continued recovery.

My bottle simply says "take on empty stomach" and i was verbally told an hour before anything else. What i have found seems to work "ok" is i take it the moment i am up and walking around. then i get in the shower and do the get ready for work thing... then i eat and walk out the door last. Typical man that i am i do my entire routine in about 45 minutes total so i am eating at about the 45 minute mark rather than the hour. been doing this ever since coming come from the hospital and i "guess" I'm ok. i get my thyroid levels checked next week so be interesting to see what they are.

as far as my numbers. I'm not really sure yet. My numbers were VERY low a few days after surgery and even for a week or two after. ridiculously low in fact. like AHI of .1 and .2 Last night was .9 which is still great but i have had a few days of 1.3, 1.6, 1.8. Now of course, even those are great of course, but i was getting around those same numbers (on the s9) before surgery. My numbers were much higher on the s8 series with ahi's anywhere from 4.9 to 8.9. Sadly, i was only on the s9 for one week before the surgery so its hard to compare what I'm seeing NOW on the s9 with what i saw for the 1 week only before surgery.

Perhaps what i will do at some point is go back to the s8 and see what the numbers are but a lot of time has passed, and i'm sure there are other variables so that may not yield any data worth while either.

guess just wait and see if they creep down to the .1 and .2 that i had right after.

Howkim: thanks for the info on the absorption. Now that you mention it, I remember hearing that as well from someone or perhaps i read it somewhere. I didn't remember it being 40 percent though..... whoah!
Pat