Wildly fluctuating o2 levels

Posted by kudzu @kudzu, Jul 16, 2022

I’m experiencing wildly fluctuating o2 levels on finger oximeter. This morning already I’ve been everywhere from 71 to 99, especially while standing still.
I went to the ER June 3 with this and they couldn’t find anything. My pft of June 3 indicated restrictive lung disease. May or may not be due to Amiodarone.
I’m going to Mayo July 27 to see a pulmonologist.
Very scary and depressing.
I know if I go back to the ER they probably won’t find anything, and I read in my medical records that my pcp has diagnosed hypochondriasis(not the case, this is really happening).
Anyone else have this?

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@colleenyoung

@kudzu, how are you doing? How did your appointment go at Mayo Clinic? Any update?

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Colleen,
Can you explain why people go to Mayo Clinic ? I am on West Coast, Bay Area. I dont think we have Mayo Climics here. Whats the difference between Mayo Clinic and regular hospitals ?
Thanks

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@lenchiksf

Colleen,
Can you explain why people go to Mayo Clinic ? I am on West Coast, Bay Area. I dont think we have Mayo Climics here. Whats the difference between Mayo Clinic and regular hospitals ?
Thanks

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Mayo Clinic is a research and teaching hospital. They do a lot of research and do not accept all patients like a regular hospital. The main Mayo clinic is in /Rochester, MN and one is also in Phoenix, Arizona and one in Jacksonville, FL . Some hospitals are affiliated with Mayo which I understand means they have access to some of the research.
Check out US News Report for hospital listings and expertise.
P.S. - People with appointments at Mayo who have had recent Covid, should have all test documentation available. Mayo asks patients to test before many procedures and they do a PCR test which means it will pick up virus for months. They want their tests and not another entity. If you have recent test positive documentation, you can avoid the test requirement. I did.

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@lenchiksf

Sorry to hear about covid. How are o2 levels now ?
Mine leveling up but very slow, its been 3 months. Had high resolution ct, looks ok to me per impressions results. Will be talking to pulm md tomorrow

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Don’t know. I also suffer from health anxiety and took my pcp’s advice not to take o2 levels right now.
Seeing scary low readings whether accurate or not does something to me.
Actually, if I’m functional and not blue I’ve decided maybe it doesn’t matter anyway. I may have had fluctuating levels all my life and not known it.
I’m going to see the pulmonologist today if they don’t kick me out for still running a low grade fever, so I’m really nervous.
Thanks for asking; glad your levels are going back up. I hope your appt. goes well.

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@kudzu

Don’t know. I also suffer from health anxiety and took my pcp’s advice not to take o2 levels right now.
Seeing scary low readings whether accurate or not does something to me.
Actually, if I’m functional and not blue I’ve decided maybe it doesn’t matter anyway. I may have had fluctuating levels all my life and not known it.
I’m going to see the pulmonologist today if they don’t kick me out for still running a low grade fever, so I’m really nervous.
Thanks for asking; glad your levels are going back up. I hope your appt. goes well.

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Update on pulmo appt for lenchiksf.
Good news. The doctor is very suspicious that the Amiodarone could have caused the drop in lung capacity. He wants to retest in about 6 months when it’s all out of my body.
As for the fluctuating o2 levels, he said the fact that I do have a heart arrhythmia could temporarily affect perfusion.
He had me do the six minute walk test wearing a medical grade oximeter while he walked with me and I did fine. Not up to my usual standards, but I’m recovering from Covid.
Or, if my circulation to my hands was not good(I think the Amiodarone was messing with my thyroid too)

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Continued- I meant that poor circulation in hands can affect readings.
I just realized maybe decrease in lung function affects it too.

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@kudzu

Update on pulmo appt for lenchiksf.
Good news. The doctor is very suspicious that the Amiodarone could have caused the drop in lung capacity. He wants to retest in about 6 months when it’s all out of my body.
As for the fluctuating o2 levels, he said the fact that I do have a heart arrhythmia could temporarily affect perfusion.
He had me do the six minute walk test wearing a medical grade oximeter while he walked with me and I did fine. Not up to my usual standards, but I’m recovering from Covid.
Or, if my circulation to my hands was not good(I think the Amiodarone was messing with my thyroid too)

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Thanks @kudzu . I am on holter monitor for two weeks now (till 8/8). Talked to my pulm md yesterday, i will also do 6 min walk test in pulm lab but its backed up her md. I didnt get to write down the term she used but she also referred to heart junction with lung that might be the cause to o2 drops.
Yes, check your tsh, t4, tpo. My tsh was 7 in June after covid, but we checked last week, went down to 1.4 which is normal

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@lenchiksf

Thanks @kudzu . I am on holter monitor for two weeks now (till 8/8). Talked to my pulm md yesterday, i will also do 6 min walk test in pulm lab but its backed up her md. I didnt get to write down the term she used but she also referred to heart junction with lung that might be the cause to o2 drops.
Yes, check your tsh, t4, tpo. My tsh was 7 in June after covid, but we checked last week, went down to 1.4 which is normal

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I sympathize. I hate being monitored.
Hope it goes well for you. Don’t know the name for that junction. Did she mention ventilation/perfusion mismatch?
This whole thing shows how important it is to do our own research.
The dr. who put me on Amiodarone said it took years to damage people. Not necessarily. Another dr here said Amiodarone would not show a pft picture like that. The pulmo said it could.
Please keep me posted.

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@kudzu

I sympathize. I hate being monitored.
Hope it goes well for you. Don’t know the name for that junction. Did she mention ventilation/perfusion mismatch?
This whole thing shows how important it is to do our own research.
The dr. who put me on Amiodarone said it took years to damage people. Not necessarily. Another dr here said Amiodarone would not show a pft picture like that. The pulmo said it could.
Please keep me posted.

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Thanks @kadzu. Pulm md said will wait to see holter results. Its some lower junction between heart and lungs, if i find, i will message. Actually we do have access to our md notes (through Cures Act, new law came out 2 years ago), which i havent been using, but i will look !

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Please do. I’ve found errors in my medical records before.

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@lenchiksf

Colleen,
Can you explain why people go to Mayo Clinic ? I am on West Coast, Bay Area. I dont think we have Mayo Climics here. Whats the difference between Mayo Clinic and regular hospitals ?
Thanks

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Why people choose to go to Mayo Clinic? That's a great question, @lenchiksf and you got a wonderful answer from @vic83.

Mayo Clinic's mission to put the patient first is really embedded in its DNA and all the people who work there from the volunteers to the clinicians. You feel like you are the only person who matters when you go there. Another hallmark of the Mayo way is the multidisciplinary approach. Specialists are assigned to you as needed. You are the focus. So if your health situation requires a pulmonologist, a cardiologist, a social worker and a pain management specialist that's who will see you. Another patient may need a completely different combination of specialties. No silos at Mayo.

Here's more info:
- Why choose Mayo Clinic? https://www.mayoclinic.org/why-choose-mayo-clinic

The good news is that more and more facilities are adopting the Mayo way and you can find good coordinated care elsewhere too. Mayo Clinic teaches their approach to care far and wide. In fact, there is something called the Mayo Clinic Care Network (https://www.mayoclinic.org/about-mayo-clinic/care-network) Institutions who are part of the Mayo Clinic Care Network (https://www.mayoclinic.org/about-mayo-clinic/care-network/network-members) are trained by Mayo and have access to Mayo Clinic expertise to treat patients closer to home.

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