Nine Months GF -- Update

MBombardier · Post by **MBombardier** » Sun Jun 26, 2011 11:12 am

The good news is my CC seems to be under control. I only have trouble if I get into the fiber (I just had to have a fresh apple the other day, and it was sooo good), or accidentally ingest gluten, soy, corn, or rice. It seems I can eat peanut butter, so I am cautiously optimistic about other legumes.

The bad news is in other areas. My thyroid is under vicious attack. The antibodies are off the charts, so I have Hashimoto's. I just had my TSH, T4, free T3 and reverse T3 tested, and not only are the TSH and T4 out of optimum range again, my free T3/RT3 ratio is 13.2 and should be above 20. So my thyroid medication is pretty ineffective on a cellular level. That explains my inability to lose weight, and I am so fatigued and depressed that little is getting done without a struggle and I cry at the drop of a hat. Thankfully, I see an endocrinologist in early July.

The other bad news is unrelated to autoimmune issues, but almost entirely related to the obesity that my thyroid is mostly responsible for. The first is my high blood pressure. I am working on relaxation techniques to take that down, and it is down except in the mornings (which is a symptom of the condition discussed in the following paragraph) and if I eat too much salt. For a week after weaning off the beta blocker I had trouble with an accelerated heart rate after eating (thyroid again), but it went away. This is a very, very good thing, and a huge relief.

The second is that I finally agreed to go in for a sleep study for sleep apnea. My insurance would not pay for it unless good cause was shown, so I did a home oximetry test last week. You know you are in trouble when you take your machine in and the receptionist says, "Oh, the doctors are really busy, so if you haven't heard from us by tomorrow evening, give us a call," and the doctor himself calls you two hours later. Suffice it to say that my oxygen levels go down so far and so often in the night that I could wake up dead one morning. My insurance has approved a sleep study.

My grandmother had a stroke at age 59, my mother died of congestive heart failure, and my brother was diagnosed with it at age 49. I thought I had dodged that bullet. Hopefully, I have.

I am trying to put a good face on things around my family and friends, and knowledge is power, so knowing all this is really a blessing. But I had to tell somebody, and who but you would really understand?

Post by **tex** » Sun Jun 26, 2011 12:22 pm

Marliss,

Well, it's definitely good to see that you have the CC figured out, and under control but I'm sorry to see that your thyroid is being so uncooperative.

IMO, your thyroid problems are almost surely the cause of all of your major health issues. Are you aware that thyroid problems are directly linked with serious sleep issues?

In some cases, the fatigue associated with hypothyroidism can result in a disorder known as Excessive Daytime Sleepiness (EDS). This debilitating syndrome can make it nearly impossible for patients to complete their daily tasks and responsibilities.

The fatigue linked with hypothyroidism is often worsened by the fact that patients with this disorder often have difficulty sleeping due to thyroid-related sleep disorders. One of the most common sleep disorders reported by thyroid patients is obstructive sleep apnea. This sleeping disorder can disrupt rest and, in some cases, pose a serious health threat.

Patients with obstructive sleep apnea do not breathe in a regular, consistent pattern while sleeping, leading to heavy snoring, restless sleep, and a near-constant sense of feeling tired during the day.

http://www.medicalonly.com/2007/09/03/s ... er_thyroid

Hopefully, the endocrinologist you have an appointment with, will be able to turn things around. As far as I'm concerned, that appointment can't come soon enough.

Best of luck with this, and hang in there - relief is surely on the way.

Please keep us posted,
Tex

Gabby · Post by **Gabby** » Sun Jun 26, 2011 1:43 pm

Dear Marliss,
Wow, you are really facing some tough issues. But you are working on it and making progress. So like Tex said hang in there, you'll get it figured out. I'm curious, how does one go about taking a home oximetry test?

Love,

Gabby

MBombardier · Post by **MBombardier** » Sun Jun 26, 2011 5:56 pm

Thanks for that link, Tex. I know I need to spend more time researching the thyroid issue. The doctor did ask me if I had thyroid problems.

Dear Gabby, thanks for your encouragement! To answer your question, apparently I am so used to being tired that I don't remember what it's like to truly have energy. My insurance required a doctor to evaluate whether or not I really needed a sleep study. Based on my answers to the doctor's questions, he didn't think I had a problem until I mentioned my father's and my brother's sleep apnea, the heart problems in my family, and that my blood pressure is higher in the morning. So he decided to send me home with one of those things they clip on the end of a finger in the hospital to monitor blood oxygen levels. There was a small device, about the size of a large watch, on a band that fastened around my wrist. It recorded the time, my O2 level, and my heart rate all night.

Joefnh · Post by **Joefnh** » Sun Jun 26, 2011 7:13 pm

Hi Marliss, that's great that you have the CC dialed in but I'm sorry to hear about the thyroid issues. Sometimes it just seems unfair with these autoimmune diseases that they come in groups as if one if not enough to deal with.

Did you suspect sleep apnea? What triggered you to question if that was an issue?

I think you have a great attitude in how you are facing this head on and dealing with each issue separately.

Best wishes in the pursuit of wellness.

Joe

MBombardier · Post by **MBombardier** » Mon Jun 27, 2011 7:56 pm

Thanks, Joe...

I have snored for many years, sometimes more (like pregnancy) and sometimes less. My father can raise the roof, and my SIL has mentioned she is often is reaching to shake my sleeping brother when he will suddenly start breathing again. I've known for years that women who snore are setting themselves up for heart problems, but it's been the elephant in the room that I ignored. Having resisted a colonoscopy for several years and finally having one last year after a friend died of colon cancer, and being blind-sided with the CC diagnosis, I guess I was ready when my doctor suggested to me yet again doing a sleep study.

I appreciate you compliment, though I don't feel like I deserve it. I feel like I am on the edge between facing something head on and dealing with it, to stressing through it with gritted teeth, to just throwing my hands up in the air. But then I remember how well I am doing now after biting the bullet and working out my food intolerances, and I remember people like you and Rich who are dealing with so much more than I am and doing it with grace and courage.

Best wishes back to you, friend!

MaggieRedwings · Post by **MaggieRedwings** » Tue Jun 28, 2011 4:53 am

Morning Marliss,

Congratulations on finally getting the CC under control but I am worried for you on the other issues. Hopefully, this new doctor will surely help you and you can put this behind you too. It is so hard to "put on the good face" for those around you when you are feeling so bad. You have the courage and determination to get to the bottom of this too.

Love, Maggie

sarkin · Post by **sarkin** » Tue Jun 28, 2011 11:21 am

WOW, Marliss - sorry you have to deal with this, but knowledge is power, for sure. I hope your endocrinologist is wonderfully helpful, and I agree with Tex... the sooner the better. It does sound as though getting a handle on the thyroid issues will make a big difference in every area of health.

Wishing you all good things,

Love,
Sara

MBombardier · Post by **MBombardier** » Sat Jul 02, 2011 4:46 pm

Quick update on my update--I had my sleep study Wednesday night. I actually did sleep, 26 electrodes, canula and all. It took me until 1am to fall asleep even with a Benadryl and two Tylenol at 8:30pm. At 3am, the sleep tech asked me if I wanted to try a CPAP machine, as I was experiencing an average of 23 apnea episodes an hour and my oxygenation level had gone down to 79 percent at one point. I have trouble with claustrophobia, and at first I didn't think I could tolerate even two minutes. But the tech was a real sweetheart and a champion encourager. She said I had no idea what real sleep was like any more, and if I just couldn't stand the mask to rip it off and we'd straighten out the electrodes later. I used a small nasal mask instead of the full face one, and pretended I was on a space ship and it was needed equipment. I finally fell back to sleep around 4am, I think. The tech was supposed to wake me at 6:30am, but she said I was in REM sleep so she let me sleep until 7am.

All in all, it was an interesting experience. The tech told me my restlessness as I settle down to go to sleep (what my husband calls "flouncing") is actually sleep apnea happening as I go into a sleep state though I think I am wide awake the whole time. I didn't have that "flouncing" when I was wearing the CPAP mask, but lay quietly and comfortably. Well--except for the #$%^ electrodes, of course.

I have my follow-up with the sleep doctor Wednesday morning just before I go see the endocrinologist about my Hashimoto's. I am really looking forward to what a good night's sleep feels like, and how it will improve my health. My insurance doesn't pay for the CPAP equipment, but I found a place through a sleep apnea forum where either open-box or refurbished machines are sold for about a quarter of the price with continuing respiratory therapist support and customer service after the sale. Gotta love those forums, and the wealth of knowledge people have and are willing to share.

Post by **tex** » Sat Jul 02, 2011 4:55 pm

That sounds mighty encouraging.

Thanks for the update.

Tex

Gabby · Post by **Gabby** » Sun Jul 03, 2011 8:58 pm

Hi Marliss

That's good news! I'm surprised insurance doesn't pay for the CPAP machine. Hope things go as well with the endocrinologist.

Sweet dreams,

Gabby

garina · Post by **garina** » Mon Jul 04, 2011 7:53 am

Oh Marliss, my heart goes out to you and all you've had to endure. I'm so happy things are looking up after your sleep test. I did not know the thyroid and sleep problems are correlated, thanks to Tex for stating that.

It sounds like you've got a handle on some major issues and so happy your CC is under control.

Big Hugs,

garina

MBombardier · Post by **MBombardier** » Mon Jul 04, 2011 12:49 pm

Thanks y'all!! :bigbighug:

Deb · Post by **Deb** » Mon Jul 04, 2011 4:01 pm

That's sounding encouraging Marliss. I couldn't get to sleep when I had my study either but they let me purchase and bring along two Ambien if needed...they were needed; one initially to fall asleep and then another after they put the CPAP on. I also have the nasal inserts on my CPAP rather than the full face mask and don't find that too uncomfortable (though sometimes my nose will itch). The rest of the unit takes some getting used to unless you get in a single position and stay there for the night. I'm on each side and sometimes my stomach and the air hose takes some adjusting. Sometimes I even find myself on my back. That hadn't worked for years as my snoring would quickly wake me up. I noticed a difference in my quality of sleep right away. I started dreaming again ( or at least was aware of them again)....something I hadn't noticed for a long while. I still wake up when I shouldn't (that would be the 3:00 a.m posts you may notice here) but I don't feel nearly as EXHAUSTED as I was all the time before.

MBombardier · Post by **MBombardier** » Mon Jul 04, 2011 4:13 pm

Very encouraging, Deb! Thanks! Hopefully, if there are others who have been struggling with sleep apnea as well as MC, they will go get it taken care of. The fatigue from the MC is enough to deal with.