I am having the best day...

[TiredBill]

@Eneia as it happens today things turned around and I had a really fine day (and was back working in the garden).

We are having very warm Spring-like weather here in Los Angeles and things are coming into bloom. It does give me a feeling of accomplishment to beautify my home. So much else is out of my control.

It is hard for me to understand the crash. After 34 years with CFS, I'm pretty good about understanding my limits and how to avoid PEM. It is a sometimes unpredictable disease, yes?

Bill

 

[Eneia]

Indeed. Every time something makes me feel better this knowledge of what could cause a crash has to be updated. I put myself in a crash 4 months ago, the Mg and Se and Niacin make me feel better but I know the crash is still there and I don't know anymore when I am doing too much!
Very very happy it was just a bad day for you. I just created a few for myself trying CoQ10, maybe I've taken too much at the same time.
The feeling of accomplishment is the best , post up some pictures one day

 

[2Cor.12:9]

The second day in a row in fact of feeling really well. How strange and unusual (and quite welcome) it feels.

33 years with this dreaded disease. And less than a handful of days where I've felt as well as I'm feeling today. Yesterday and today I've been enjoying hard-work in the garden for long hours (the weather here in Los Angeles has been perfect) and I've been able to do things I ordinarily wouldn't dream of doing for fear of setting up a crash. But no PEM warning signs at all.

It is amazing what a refreshing night's sleep will do.

I'm near tears (of joy) writing this. I needed a taste of feeling "normal" as things had been moving the wrong way for me in the past couple years and I've been struggling lately after some decades where I felt like I'd managed CFS pretty well (all things considered) and was (relatively speaking) one of the success stories.

Enough thinking. I'm going back outside to do some more planting, weeding, pruning and rock moving.

A day like today keeps hope alive. I'm relishing the moment.

Best to all,

Bill

So happy to hear this @TiredBill ! - I'm just now in process of trying to get a firm dx of SA - with a home sleep study to be done in 2 weeks. I'm in my 32 yr of ME/CFS. Like you, I've had better years where I could actually do some gardening. But the past 3 years I've been in the worse relapse since I first got sick.

Funny, that my downturn began while visiting our son in LA. My pulmonologist was surprised that after all these years with CFS I've never had a sleep study done. (Me too!) He's pretty sure I have SA as I have low oxygen at night and have also developed pulmonary hypertension which showed up on a echocardiogram recently. They had to rule out all other causes for the PH. SA can sure cause all sorts of nasty problems when left untreated - so I'm hoping I will one day be able to post a good report such as yours.

Have really appreciated all your information re sleep apnea.
Hope you continue feeling better.

PS. Just read another of your posts re Kaiser - Can you believe I was one of the lucky ones to actually get diagnosed within the first 6 months back in 1986 at Kaiser in Sacramento? My doctor there said she never would have figured it out had her brother (who lived in SoCal) not also had it. She dx'd me with "Chronic Epstein Barr Virus" and said she was sorry to tell me it could last 18 months!! Meanwhile, almost 32 years later..... haha!

 

[TiredBill]

So happy to hear this @TiredBill ! - I'm just now in process of trying to get a firm dx of SA - with a home sleep study to be done in 2 weeks. I'm in my 32 yr of ME/CFS. Like you, I've had better years where I could actually do some gardening. But the past 3 years I've been in the worse relapse since I first got sick.

Funny, that my downturn began while visiting our son in LA. My pulmonologist was surprised that after all these years with CFS I've never had a sleep study done. (Me too!) He's pretty sure I have SA as I have low oxygen at night and have also developed pulmonary hypertension which showed up on a echocardiogram recently. They had to rule out all other causes for the PH. SA can sure cause all sorts of nasty problems when left untreated - so I'm hoping I will one day be able to post a good report such as yours.

Have really appreciated all your information re sleep apnea.
Hope you continue feeling better.

PS. Just read another of your posts re Kaiser - Can you believe I was one of the lucky ones to actually get diagnosed within the first 6 months back in 1986 at Kaiser in Sacramento? My doctor there said she never would have figured it out had her brother (who lived in SoCal) not also had it. She dx'd me with "Chronic Epstein Barr Virus" and said she was sorry to tell me it could last 18 months!! Meanwhile, almost 32 years later..... haha!

We really have been walking similar paths. Epstein Barr was the original call with me too. I never dreamed I'd still be dealing with it 34 years later, without a cure or even a biomarker. Sigh.

I hope the sleep study gives you some answers.

If you need a machine, please make sure you get one that can record full efficacy data (not just "compliance" data) to an SD card. Not all machines have this capacity. It allows one to track and review the wealth of data these machines capture using a free piece of software called "Sleepyhead." And then to make adjustments to maximize the results based on that data.

I would never have known that I had mixed apneas (obstructive and central) if I had not tracked the data myself. I need a specialized machine. I caught that. Not my doctor.

I can point you to a user forum where very informed people can help analyze the data and help optimize the settings. PM me if you get to that point and are interested. Many doctors and DMEs just leave these machine "wide-open" (meaning leaving the machine to potentially go from 4 to 20 cm/H2O automatically) when this rarely--if ever--provides the best therapy.

For APAP machines, most users prefer the ResMed AirSence 10 AutoSet machine out of the standard APAP machines. My choice for sure. The alternative is the Philips Dreamstation.

Getting a mask you are happy with is also critical. I'm using a ResMed P10 nasal pillow, which has a cult following due to the minimalism and diffused venting system.

While it seems odd to wish a sleep apnea on anyone (including myself), I've been grateful that my very bad decline in recent years has been largely reversed. I'm still dealing with CFS, to be sure, but worse sleep and desats on top of CFS is a killer.

I've come to like my device. I never fail to use it. Some days are better for me than others. I'm sure you know how that goes. But I was having no good days.

It has been a combo for me. Treating sleep apnea, treating a "low-normal" thyroid, and--critically--treating "barely within normal" range testosterone levels. TRT made a huge difference. Thyroid, not so much.

I'd love to hear how it goes.

Bill

 

[2Cor.12:9]

For APAP machines, most users prefer the ResMed AirSence 10 AutoSet machine out of the standard APAP machines. My choice for sure. The alternative is the Philips Dreamstation.

@TiredBill Thanks for all the advice! I'm starting with just a home sleep study-my pulmonolgist is pretty sharp though and said he would have to do some guesswork with the home study. I wouldn't be surprised if I have mixed - eesh - sometimes I "forget to breath" when I'm awake!

Of the above mentioned machines, which is the quietest? This is a big concern for both me and my husband. (Don't care to spend the rest of our lives together sleeping in separate rooms - ha!)

I have Hashimoto's - thyroid meds are essential for me, but certainly no cure for ME/CFS. I don't expect CPAP to be a miracle answer either - but anything that can improve energy, cognitive function and overall well being would be welcomed.

If I do have SA, I'll ask you about the forum.
Thanks again!

 

[TiredBill]

@TiredBill Thanks for all the advice! I'm starting with just a home sleep study-my pulmonolgist is pretty sharp though and said he would have to do some guesswork with the home study. I wouldn't be surprised if I have mixed - eesh - sometimes I "forget to breath" when I'm awake!

Of the above mentioned machines, which is the quietest? This is a big concern for both me and my husband. (Don't care to spend the rest of our lives together sleeping in separate rooms - ha!)

I have Hashimoto's - thyroid meds are essential for me, but certainly no cure for ME/CFS. I don't expect CPAP to be a miracle answer either - but anything that can improve energy, cognitive function and overall well being would be welcomed.

If I do have SA, I'll ask you about the forum.
Thanks again!

@2Cor.12:9 The ResMed AirSence10 AutoSet machines are very quiet. I have not used a Philips Respironics device. I don't have an impression that they are loud. Most patients prefer ResMed devices given a choice. The ResMeds have better control over pressure-relief on expiration, a faster-responding algorithm, and a nicer industrial design IMO.

That said, a Philips machine can be dialed in to give good therapy. It is just a little more critical to get them set up optimally.

It is important to get a model that has full efficacy data capability, regardless of brand. Don't end up with what is known in the sleep apnea community as a "brick."

Also, it is better to get a machine that can run either in fixed pressure (CPAP) or in auto-pressure (APAP) modes.

I'm sensitive to noise myself. No problem. My wife is thrilled not to deal with my snoring anymore. So a big win in the noise department.

As to thyroid. I just tried for the third time in recent weeks to use T3 in addition to Levothyroxine. I pushed through for 7 days (quitting last Sunday) this time, but I'm feeling destroyed. Very bad fatigue which has persisted even after a couple of days being off T3.

Temporarily at least, all the gains I've experienced have been erased. I was hoping a combo thyroid therapy would help me. Alas.

Bill

 

[2Cor.12:9]

@2Cor.12:9

As to thyroid. I just tried for the third time in recent weeks to use T3 in addition to Levothyroxine. I pushed through for 7 days (quitting last Sunday) this time, but I'm feeling destroyed. Very bad fatigue which has persisted even after a couple of days being off T3.

@TiredBill - Thanks for the machine info. So sorry about the thyroid meds not working out yet - it takes a lot of patience too. Took me years to get the right doses dialed in - and I still have to up them once in awhile. I take Synthroid and Cytomel (important to be name brand only on both if possible)

Just curious- does your doc prescribe your T meds based upon your Free T3 and Free T4 labs? Those should both be in the upper half of the range - doesn't have to be off by much to make you feel more exhausted than you already are.

The Cytomel is adjusted according to the FT3 and Synthroid according to the FT4 - If you have autoimmune thyroiditis ie: Hashimoto's (based on a positive anti-TPO) it will be a progressive thing and the meds need adjusting from time to time.

ME/CFS patients with thyroid disease often have trouble converting T4 into T3, which is why Cytomel is often needed. When taking Cytomel the TSH can go down to almost zero, which should be okay as long as the FT 3&4 aren't high. - The TSH isn't necessarily a reliable way to test.

Having ME/CFS and thyroid disease together is difficult to treat because the symptoms are so overlapping. Dr Ridha Arem of the Texas Thyroid Institute has a good book called the Thyroid Solution. In it he explains how to know those distinctions when you have both. On the one hand, proper T dosing won't make our ME go away, but on the other hand it's tempting to give up and just attribute it all ME - when in fact getting just the right dose might help after all. Probably much like the sleep apnea thing.

Mary Shoman at VeryWell.com is a thryoid patient and expert with a lot of great info and books as well.

Good luck to you.

 

[TiredBill]

@2Cor.12:9

I've recently switched to a more forward-thinking Endocrinologist. The old one was one of those TSH/FT4-only traditionalists. He just retired. Over a year with him, we slowly raised my FT4 (with me pushing for dose increases) from the bottom of normal range to the upper quarter of range using only generic Levothyroxine. I felt a mild benefit, but nothing dramatic.

I expressed my disappointment about the lack of change with the new Endocrinologist. She ran an FT3 recently. The result was a sliver above middle of range.

I explained my situation with CFS and that I'd be willing to try something new if there was more benefit to be had (especially around fatigue issues). She prescribed a generic for Cytomel.

I've tried a few different protocols. The latest (and worst) was 5 mcgs in the morning and another 5 mcgs in the afternoon.

My fatigue rebounded with a vengence. I stopped after last Saturday. But the last three days have been pretty bad for me.

Since we don't have cures/treatments for CFS, I'm trying to optimize any other areas that can be contributory to fatigue issues. I did not expect to have such a set-back using T3. I'm not very knowledgeable on thyroid issues, I must admit.

Bill

 

[2Cor.12:9]

@2Cor.12:9

She prescribed a generic for Cytomel.

I've tried a few different protocols. The latest (and worst) was 5 mcgs in the morning and another 5 mcgs in the afternoon.

My fatigue rebounded with a vengence. I stopped after last Saturday. But the last three days have been pretty bad for me.

@TiredBill - So sorry about all the trouble you're having. Some people do feel worse at first for various reasons.

Did you happen to decrease the T4 when you added the T3? That can make you crash (it did me, until I bumped my Synthroid back up) Also, are you taking your meds at least an hr before eating? They always recommend an empty stomach, but if they need to be taken with food it's important to be consistent.

Also, if you're on generiics, sometimes the pharmacy changes companies and that can make a huge difference.

My doctor prescribes name brand only because of the potential for inconsistency and the differing fillers, dyes, etc. I'm on Medicare which doesn't normally cover name brand, but medicare will make an exception for T meds if the doctor sends a note saying a name brand is medically necessary. Here's an article about generic vs name brand T meds.

Best wishes!
https://www.healthcentral.com/article/brand-name-vs-generic-thyroid-medications

ps. Then again there's always the possibility the crash has nothing to do with the cytomel at all. I've had to cut back on Cytomel when the dose was too high because it made me hyper. But in my experience having more fatigue that was caused from T med dosing has always been the result of under dosing. But everyone is different which is why it's always best to check with the doctor. Sounds like you have a good one.

 

[TiredBill]

@TiredBill - So sorry about all the trouble you're having. Some people do feel worse at first for various reasons.

Did you happen to decrease the T4 when you added the T3? That can make you crash (it did me, until I bumped my Synthroid back up) Also, are you taking your meds at least an hr before eating? They always recommend an empty stomach, but if they need to be taken with food it's important to be consistent.

Also, if you're on generiics, sometimes the pharmacy changes companies and that can make a huge difference.

My doctor prescribes name brand only because of the potential for inconsistency and the differing fillers, dyes, etc. I'm on Medicare which doesn't normally cover name brand, but medicare will make an exception for T meds if the doctor sends a note saying a name brand is medically necessary. Here's an article about generic vs name brand T meds.

Best wishes!
https://www.healthcentral.com/article/brand-name-vs-generic-thyroid-medications

I did not decrease the T4. I had switched my routine from taking T4 just before bedtime to first thing in the morning on the advice of the Endocrinologist. I didn't notice a difference.

I don't eat, but do have (now black) coffee in the AM. Endo said that was OK as long as there is no milk.

The pharmaceutical company for the T4 (Levothyroxine) has been stable. I have not noticed anything variable as a user.

I'm with Kaiser. I believe I could do name-brands, but I'd expect a huge cost increase from $10 a month now.

Still feeling crashed despite having taken the last T3 on Saturday.

Bill

 

[Judee]

Just a thought about the T3...I'm starting to see a lot of online thyroid doctors prescribing the medications in a more bio-identical dosage. For example, our thyroids release T4/T3 in a 97%/3% ratio. Maybe you could work with your doctor on trying to match that?
I know for me personally, too much T3 to T4 affects my heart and also makes me burn out so right now I've just gone back to the Levothroxine and will try to find a doctor later who could prescribe the T3 with that but in a bio-identical mix.

 

[TiredBill]

Just a thought about the T3...I'm starting to see a lot of online thyroid doctors prescribing the medications in a more bio-identical dosage. For example, our thyroids release T4/T3 in a 97%/3% ratio. Maybe you could work with your doctor on trying to match that?
I know for me personally, too much T3 to T4 affects my heart and also makes me burn out so right now I've just gone back to the Levothroxine and will try to find a doctor later who could prescribe the T3 with that but in a bio-identical mix.

Thanks for the information. I'm out of my depth in the thyroid department. Since it has been almost a week since stopping T3 and I'm still blasted with fatigue the Endocrinologist ran and adrenal function challenge test today.

I'm surprised to have been knocked so low.

Bill (who is not having the best day)

 

[Judee]

@TiredBill, I've been meaning to ask you if you are feeling any better.

I know, crashes can last a long time. I'm in the midst of one right now. I'm going to try some of the PEM reducers that others have mentioned on these boards and see if that will head this off a bit. I had about 6 out of 7 days last week where I absolutely could not say 'no' to life's responsibilities but now I am paying for it. On one of those days though I tried a pinch of cumin for the first time. Stomach didn't like it but I felt better that evening and the next day for a while.

Anyway, hope you are feeling a little improved.

 

[TiredBill]

@TiredBill, I've been meaning to ask you if you are feeling any better.

I know, crashes can last a long time. I'm in the midst of one right now. I'm going to try some of the PEM reducers that others have mentioned on these boards and see if that will head this off a bit. I had about 6 out of 7 days last week where I absolutely could not say 'no' to life's responsibilities but now I am paying for it. On one of those days though I tried a pinch of cumin for the first time. Stomach didn't like it but I felt better that evening and the next day for a while.

Anyway, hope you are feeling a little improved.

@Judee

Thanks for asking. I am beginning to feel better. Yesterday was the first day of recovery, but I rested anyway.

Today, I actually got out and worked in the garden for a while. It was a lovely day here in Los Angeles.

I'm not back to where I was. And disappointed that T3 was the opposite of beneficial. Now I'm waiting to hear what my cortisol test result mean. I have no clue.

I appreciate the kindness.

I hope your crash lifts soon!

Bill

 

[Judee]

I'm so glad!!!

We had a blizzard last week but April snows usually melt quickly and today they are 90% gone.

Hope you can let us know how everything turns out with that cortisol test.

Judee

 

[TiredBill]

I'm getting very little information back from my over-worked Endocrinologist. She says the adrenal function test response was "normal" in response to an ACTH injection and 60 min re-test. Baseline cortisol looks low to my non-expert eyes.

No explanation why generic Cytomel would put me into a week-and-a-half long crash after discontinuing.

This is the first day since stopping T3 that I'm not completely exhausted. Not that I feel great. 12 days of a wipeout.

Bill

 

[2Cor.12:9]

I'm getting very little information back from my over-worked Endocrinologist. She says the adrenal function test response was "normal" in response to an ACTH injection and 60 min re-test. Baseline cortisol looks low to my non-expert eyes.

No explanation why generic Cytomel would put me into a week-and-a-half long crash after discontinuing.

This is the first day since stopping T3 that I'm not completely exhausted. Not that I feel great. 12 days of a wipeout.

Bill

This illness has a mind of its own and sometimes there just doesn't seem to be an answer for our crashes. Maybe it had nothing at all to do with the Cytomel. Maybe your adrenal function is okay. Who knows? It's spring time and maybe it's something in the air? Or maybe you overdid it when you were feeling better.
It's just so frustrating, I know. Hope you feel better soon.

 

[TiredBill]

This illness has a mind of its own and sometimes there just doesn't seem to be an answer for our crashes. Maybe it had nothing at all to do with the Cytomel. Maybe your adrenal function is okay. Who knows? It's spring time and maybe it's something in the air? Or maybe you overdid it when you were feeling better.
It's just so frustrating, I know. Hope you feel better soon.

Except I tried the Cytomel 3 times and each time had strongly rebounding fatigue. The only difference the last time was instead of giving up after a couple days (which seems smart) was that I pressed on for a week hoping for improvement.

I don't think I overdid anything nor do I think something is in the air.

For some reason, the T3 that I hoped would be beneficial provoked a very bad response.

Bill

 

[2Cor.12:9]

Except I tried the Cytomel 3 times and each time had strongly rebounding fatigue. The only difference the last time was instead of giving up after a couple days (which seems smart) was that I pressed on for a week hoping for improvement.

I don't think I overdid anything nor do I think something is in the air.

For some reason, the T3 that I hoped would be beneficial provoked a very bad response.

Bill

@TiredBill - Gosh, I want to apologize if I sounded cavalier. I've read that some people just cannot tolerate cytomel - even name brand and some will opt for Armour or another natural T replacement. Being more tired is even listed as a rare side effect on Web MD.

I hope your doc can help figure out something for you.

Best,
Diane

 

[perchance dreamer]

@TiredBill, have you ever tried Armour or one of the other natural brands? I do well with Nature-Throid. I had been on Armour for years, but it disagreed with me when they changed something about the formula.

Synthroid didn't work out for me at all, and neither did Cytomel. I go to an integrative medical clinic now, and that's where I was given the opportunity to try Armour, and now, Nature-Throid. I don't know if regular doctors are willing to prescribe them.

It's been so long ago that it's hard for me to remember, but I think when I started at the integrative clinic, my P.A. got me to address adrenal problems, too. It all took some trial and error, but I ended up feeling a lot better than when I was on synthetic thyroid supplements.

I haven't read this entire thread, but I think someone provided a link to Stop the Thyroid Madness. This site helped me a long time ago:

https://stopthethyroidmadness.com/