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My new autonomic cardiologist wants to hospitalize me for tests!!!

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
She will do the ACTH stim test tomorrow and said it is the absolute gold standard test for adrenal functioning. She said if it is normal than my adrenals are okay but if not, then she will explain the options for treatment.

Unfortunately the ACTH stim test may be unreliable in ME. It measures how well you can produce cortisol in response to ACTH. Our problem can be that we don't have enough ACTH of our own, or an abnormal diurnal pattern of ACTH production, so however well we produce cortisol in response to externally-administered ACTH, we may still not be able to produce enough the rest of the time.

I have a file where I have summarised papers on HPA abnormalities in ME, and one of the abstracts is here.

I wouldn't be surprised if it was something your endo has never heard of!
 

Gingergrrl

Senior Member
Messages
16,171
I just met with the nurse practitioner and my cardio and they said my CTA was perfect with no blockage in arteries and heart pumping function was perfect!!! So I do not actually have ischemia but remain very functionally impaired.

They found my magnesium was low (even though I take significant mag supplements) so we talked about magnesium injections. After the TTT I will get a saline IV with magnesium in it.

I will also do the ventilation & perfusion (lung) scan and some breathing tests with a pulmonologist. If my lungs are clear then he feels my problem is autonomic. He talked about several treatments, some of which I have never heard of before.

He said he has another female pt down the hall with literally my same symptoms (except she has EDS which I don't) and he is going to introduce us which I thought was funny.

I am so grateful to be able to do all these tests in the hospital and never could have coordinated them as an outpatient. I am fearful my insurance could deny this entire hospital stay but then I will appeal or sue them if I have to.

@zzz I wanted to add that I do NOT have the abnormal oscillating t waves or inverted/flat t-waves that you wanted me to ask about from Dr Lerner's study so that is good!

My cardio is convinced I do not have myocarditis but is going to talk to Dr. K. And even if small amount of virus in my heart (not enough to show on echo or effect my ejection fraction) then the treatment is anti-virals which I am already doing.
 

justy

Donate Advocate Demonstrate
Messages
5,524
Location
U.K
Hi Ginger - well done you - you are doing it!

I understand totally about feeling afraid without your husband there. I live in a very remote place, tucked away on our own and when I feel very ill I find it hard to cope here alone at all. I rely on my husband so much, wish I didn't and also feel pathetic for it, but its normal when you have so much illness and stress.

I'm freaking out about how I will cope being in Brussels for 3 months without my husband (my son is coming, but he is quite young and isn't used to looking after me and all my weird anxieties and worries. I feel like if you can do that then I can try and face what I have to do.

Sending big hugs :hug::hug:
 

xchocoholic

Senior Member
Messages
2,947
Location
Florida
Hi @Gingergrrl . I'm so happy for you. This sounds like a dream come true for anyone with me/cfs.

Not to add to your stress but have you been thoroughly evaluated by a neurologist ? If not, is that a possibility while you're there ? Or at least get a referral to one your doctor trusts ?

I'm mostly interested in your Romberg (for ataxia) results at this point. This appears to be common in me/cfs and can explain walking problems which may cause sob and visual problems when walking. Mine did. Cort wrote about this. This test just involves standing in place.

A positive Romberg result indicates brain damage but I'm not sure if this will physically show up on any tests. I vaguely remember some forms of ataxia do tho.

White lesions on the brain appear to be common too.

Hope I didn't add to your stress. I just thought you might get a better neurological workup in the hospital.

Tc. X

Ps. Forgive me for mentioning gluten, lol, but the last time I was at the hospital I noticed that they were using powdered lemon packages with gluten instead of lemon wedges. That was a shocker !
 
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Messages
15,786
Thanks and in limbo now waiting for the first test. The IV from the ER was too small so they had to insert a bigger one ( for the contrast dye that I will be having for the test) and it took multiple people to get it in b/c my veins move around. So now I have an IV in each arm and it was really painful. Good times :).
I've got Disappearing Veins too ... it took them 6 tries to get cannulas inserted for my IV antibiotics on two different occasions :eek: And one eventually ended up in my foot for 3 days.
 
Messages
15,786
Thank you to everyone for all your support and posts and they are giving me courage here in the hospital. I have not been able to sleep b/c it is noisy & bright here plus it was freezing cold.

They just came to do my vitals and nurse said it was only 55 degrees in here. It turned out I had a thermostat to control temp but I didn't know. I also can't sleep b/c I am hooked to Heart monitors and have IV's in arm and very uncomfortable and hard to move.
Is it possible to turn off the light and close the door? I had a sleep study in a room with 4 beds, but I was the only person there so I turned off the light and shut the door most of the way to keep out the light and noise from the corridor.
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
This is both on topic and off topic and might need to be expanded in another thread if people want to discuss it.

A friend was denied insurance coverage for a stem cell transplant to stop and reverse his downward spiral toward death with progressive MS. He borrowed money and got the transplant and is well on his way back to health. He did extreme advocacy re: his insurance claim and it went all the way to a feature in the NY Times and celebrity endorsements. A few weeks ago he got full reimbursement--plus interest!--and an apology from his insurance company. That $402,000, folks!

He tells the story in this video:
 

Gingergrrl

Senior Member
Messages
16,171
Thank you so much to everyone for all the feedback and @Sushi, I am going to watch that video once I am back home.

@justy I really admire your strength and determination to go to Brussels for three months and I am only in hospital for 3-4 days unless something changes so you are my hero!

My TTT was an epic failure b/c my IV line was infiltrated so they couldn't start the test. They tried one more IV in my arm and then three times in my hand but it would not work. They had to send me back to my room for the nurse to do the IV (which she got on the first try!)

So the TTT got re-scheduled for later today which means I continue as NPO- no food or water until after test. I am severely dehydrated and my BP was 84/55 last time they checked.

In the meantime I did the nuclear lung scan which went okay. After the TTT I will get to eat, drink water and have the saline/magnesium IV.
 
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Gingergrrl

Senior Member
Messages
16,171
I am back in my room now and eating lunch! It's funny b/c there is no sodium on the cardiac unit (but I am supposed to have salt for low BP and blood volume) so my husband snuck me in a plastic bag with salt LOL.

The TTT was not too bad b/c I only did the first half where they do not inject you with Isopril to speed up your heart. I felt short of breath and dizzy during the test but it was tolerable. Someone is supposed to come give me IV saline & magnesium at some point.
 

Gingergrrl

Senior Member
Messages
16,171
@MeSci I read your link re: the ACTH test but didn't really grasp it. It think b/c I didn't sleep at all last night in hospital and had tests all day.

What is the question I would want to ask the Endo tomorrow and is it saying the lower amount is a more accurate test than the higher amount or vice versa?

@JoanDublin thank you and I never think of myself as a hero (but always do about all you guys) like how you advocate and fight for your son- that is a hero!
 

Sea

Senior Member
Messages
1,286
Location
NSW Australia
Unfortunately the ACTH stim test may be unreliable in ME. It measures how well you can produce cortisol in response to ACTH. Our problem can be that we don't have enough ACTH of our own, or an abnormal diurnal pattern of ACTH production, so however well we produce cortisol in response to externally-administered ACTH, we may still not be able to produce enough the rest of the time.

I have a file where I have summarised papers on HPA abnormalities in ME, and one of the abstracts is here.

I wouldn't be surprised if it was something your endo has never heard of!

I don't think the test is unreliable in ME. I think that many doctors just don't know where to go next if the test is normal. If your cortisol response is normal to the ACTH stim test then it shows that the problem is not your adrenal glands. It doesn't however show whether you have a problem producing or regulating the ACTH yourself. Further testing is necessary.
 

Gingergrrl

Senior Member
Messages
16,171
@Sea what testing would be next if ACTH stim test is normal? The endo in hospital said it is the definitive gold standard test. My CFS Dr agrees with this and my own endo never even suggested this test!
 

WillowJ

คภภเє ɠรค๓թєl
Messages
4,940
Location
WA, USA
He said he has another female pt down the hall with literally my same symptoms (except she has EDS which I don't) and he is going to introduce us which I thought was funny.

Very cool to get a hospital friend!

Don't worry--I feel lost in the hospital without my sister. If she's too sick to come, I text her, and if possible some of my ME friends and a couple of non-ME friends.

But you are doing very well. To have all this going on and not be a lump of jello is amazing. Be sure to plan some good rest for yourself after all this.

About being cold, don't they have warmed blankets?
 

Gingergrrl

Senior Member
Messages
16,171
My meeting with the pulmonologist was not very useful and not sure if I will be doing any breathing tests w/him or not.

He was clearly in a rush and just wanted to tell me that my lung scan did not show any blood clots. While this is good, I never actually thought that I had a blood clot. I thought the test showed if perfusion of air & blood was normal but I guess to him this is the same thing.

He felt my history was more complex than the patients he normally works with and when I mentioned viral re-activation of EBV, I could tell that I'd lost him.

I explained that since May/June, I've been having worsening shortness of breath especially while walking, taking a shower, or talking. He said, "Well, that's not normal" and I thought, "No #%$@ Sherlock" and could see I was not going to get much further.

He said I could do the breathing tests on Mon but I told him I was pretty sure I was going home tomorrow (Sat) night. But if I thought it could be useful, I used to see an allergist/immunologist and could always make an appt with him for breathing tests which never occurred to me.

The one thing he did say which was fascinating, and I am going to ask my cardio, is that sometimes even though you do not have myocarditis, you could have a virus in the conduction system of your heart (which I assume equals autonomic problems?). Has anyone ever heard of this?
 

Kati

Patient in training
Messages
5,497
@Gingergrrl most regular drs don't understand what is going on with us. They have never learnt in school or if they did at all, they heard the root cause of our illness is false illness beliefs.

i begin to think that the more I make noise and try to find a cause, the more crazy I look because after so many negative interactions with the health care system, I have grown to be quite desperate and perhaps insistent that I get more tests. i am not saying it is wrong to have more tests. It's just that our illness baffles the best of doctors. Hence, there are now millions of us sick and because most of them doctors have never paid attention, and because this disease does not belong to any medical specialty, we are left behind, sick and severely sick.

It is truly unbelievable.

Thankfully you have a dr in Mtn View that can take a look at the whole picture and review your tests tht you have had in the last couple of days and decide with you what the best treatments are. While these tests may not bring you definite answers quite yet, the good news is that they are good enough to rule out conditions, so while it may not look like it quite yet, you are making progress.

Rest, @Gingergrrl, rest.
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
@MeSci I read your link re: the ACTH test but didn't really grasp it. It think b/c I didn't sleep at all last night in hospital and had tests all day.

What is the question I would want to ask the Endo tomorrow and is it saying the lower amount is a more accurate test than the higher amount or vice versa?

I understand from the paper that the lower dose is more reliable.

Studies (although not all) have found that many of us have low cortisol or a reverse pattern of cortisol production. Some of us here have reported low cortisol. Yet AFAIK all of us who have had the ACTH stim test have had normal results. So the problem seems to be an earlier stage in cortisol production, not the ACTH-to-cortisol stage. It may be the CRH-to-ACTH stage.

Could you give the link to the abstract to your endo?

As @Sea says, doctors may not know that they need to do further tests if ACTH stim is normal. My own doctors just stopped there. They only seemed to be interested in whether I had Addison's disease (which seemed unlikely to me).
 
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Sea

Senior Member
Messages
1,286
Location
NSW Australia
@Gingergrrl yes the ACTH stim test is the gold standard for finding out whether your adrenals respond properly and can produce an adequate cortisol response.

It's just not the end of possibilities for cortisol issues. Sometimes we produce too much or not enough of the ACTH so then our cortisol production is not right either. I am not familiar with the further testing, I just know that it is possible to look beyond the ACTH stim test if it is normal.
 

zzz

Senior Member
Messages
675
Location
Oregon
I just met with the nurse practitioner and my cardio and they said my CTA was perfect with no blockage in arteries and heart pumping function was perfect!!! So I do not actually have ischemia but remain very functionally impaired.

Excellent! This is definitely the best news of the day. :) Having ischemia would be a whole different can of worms that you'd have to deal with at the same time as your ME/CFS. It's a great relief to hear that you're fine there.

There's also some hidden good news here. If you have "no blockage" and perfect heart pumping function, it's really hard to see how, when you reach your uncle's age in three years, you'd have enough ischemia to cause you problems. In fact, I would be cautiously optimistic here and say that the complete absence of ischemia at your age constitutes modest (though inconclusive) evidence that you did not inherit your uncles' genes for cardiac problems.
@zzz I wanted to add that I do NOT have the abnormal oscillating t waves or inverted/flat t-waves that you wanted me to ask about from Dr Lerner's study so that is good!

It sure is! Dr. Lerner said that everyone with ME/CFS had inverted or flat T-waves. Apparently, he was wrong.

So all the cardiac testing you've had so far (and these tests are beginning to add up) show a perfectly healthy and normally functioning heart.
My cardio is convinced I do not have myocarditis but is going to talk to Dr. K.

With your T-waves being normal, Dr. Lerner's case that all PWME (and specifically you) have myocarditis seems to have been substantially undercut, especially when you factor in the normal echocardiogram. Although myocarditis can cause symptoms such as shortness of breath, those symptoms (and your other remaining ones) are considered to be due to dysautonomia by the CFS experts, and not to any cardiac issues. For example, the Canadian Consensus Criteria consider "exertional dyspnea" (which is exactly what you have) to be one of the symptoms that qualifies someone for a diagnosis of ME/CFS. Section 6 of the Criteria, "Autonomic Manifestations", includes NMH, POTS, palpitations with or without cardiac arrhythmias, and various breathing dysregulations, including exertional dyspnea.

That seems to cover everything we know you've got.
My meeting with the pulmonologist was not very useful and not sure if I will be doing any breathing tests w/him or not.

I hope not.

Our breathing tests often turn out abnormal, but that's just due to all the autonomic factors of which your pulmonologist is blissfully unaware. A few years ago, my allergist had me do the standard breathing tests at my annual appointment, and sure enough, the results were very low. She was very concerned that this might be due to some very nasty condition (I've forgotten which one), and that it could turn very bad if I had it and wasn't treated for it. So she recommended tests. I assured her that these breathing results were not unexpected for someone with CFS, and did not bother with the tests. My breathing tests in succeeding years were all similar; I am quite stable. My allergist has noticed this, and has made no more suggestions about additional tests.
He was clearly in a rush and just wanted to tell me that my lung scan did not show any blood clots. While this is good, I never actually thought that I had a blood clot.

They were trying to track down the cause of your breathing problems. In ME/CFS, these are assumed to be due to dysautonomia unless there is reason to expect otherwise. But your L.A. doctors don't know this, because they don't know ME/CFS, which I think is becoming more obvious.
I thought the test showed if perfusion of air & blood was normal but I guess to him this is the same thing.

Technically, it's blood perfusion and lung ventilation. I got the feeling from the way you described it earlier that they were mainly looking for a blood clot in the perfusion scan, and threw in the ventilation scan because it was easy and would rule out any physical obstruction in the lungs. But I don't think they really expected to find any, and they didn't, so he didn't bother mentioning this to you.
He felt my history was more complex than the patients he normally works with and when I mentioned viral re-activation of EBV, I could tell that I'd lost him.

Yeah, he's a pulmonologist. EBV is a virus. :rolleyes: Sigh.
I explained that since May/June, I've been having worsening shortness of breath especially while walking, taking a shower, or talking. He said, "Well, that's not normal" and I thought, "No #%$@ Sherlock" and could see I was not going to get much further.

He trained in pulmonology, and they don't teach you about ME/CFS or its symptoms there. Nor do they typically publish articles about ME/CFS in pulmonology journals. How was he to know?

The same can be said for any other specialty. Articles about ME/CFS are published in professional journals (thousands of them, actually), but how many doctors read them? The articles tend to be specialized, like all journal articles, so it's very hard to get a good overall picture of ME/CFS just from the articles.
He said I could do the breathing tests on Mon but I told him I was pretty sure I was going home tomorrow (Sat) night. But if I thought it could be useful, I used to see an allergist/immunologist and could always make an appt with him for breathing tests which never occurred to me.

If you see your allergist, you'll get the same reaction I did, and they'll want to do more useless tests. As I'm sure you've noticed, useless tests are very draining of energy. (Even the useful ones are. But at least they're useful...)

And speaking of tests, I've been wondering more and more exactly why your upcoming angiogram is being done. Angiograms are rather safe, but they are invasive surgical procedures, and as such, easily cause PEM in many PWME. With all you've been going through, you don't want PEM if you can possibly avoid it. Does your ME/CFS specialist think that the angiogram is necessary? You've got your echocardiogram, your CT scan, and your EKG all showing a perfectly normal, healthy heart, and for someone with ME, your other symptoms can all be explained by dysautonomia. Cardiac problems of the type that would show up in an angiogram are not a normal part of ME, nor do I see any reason to suspect that they exist in your case. I'd recommend finding out what the reason for the angiogram is at this point. Is it just that your cardiologist, being a cardiologist, looks for cardiac problems first, and autonomic problems only after cardiac problems have been completely ruled out? That would not seem to make sense in ME, where autonomic causes are the rule, and cardiac causes of the type that an angiogram looks for (problems in blood perfusion in the heart and surrounding arteries or veins) are simply not part of ME.

Of course, if you don't do the angiogram, you don't get the endomyocardial biopsy. But no one does an angiogram just to get an endomyocardial biopsy, nor are these biopsies done through this route without the angiogram part. The biopsies aren't essential; that's why no one does them in this country. If you have viral myocarditis, the virus would be visible in blood tests, and could be treated with antivirals. It wouldn't be any of the herpes viruses, as the ones you have active are being treated by the Famvir. And your ME/CFS doctor has ruled out parvovirus.
The one thing he did say which was fascinating, and I am going to ask my cardio, is that sometimes even though you do not have myocarditis, you could have a virus in the conduction system of your heart (which I assume equals autonomic problems?). Has anyone ever heard of this?

I've seen a couple of references to viruses in the conduction system, but these references were describing how the viruses used the conduction system to get to the heart muscle, where they made their home. I've seen no reports of viruses causing trouble in the conduction system itself.
@Gingergrrl most regular drs don't understand what is going on with us. They have never learnt in school or if they did at all, they heard the root cause of our illness is false illness beliefs.

Medical schools are quite silent on the subject of ME/CFS. If we are going to have knowledgeable doctors, then they are going to have to be taught about ME/CFS properly in medical school. And that's doctors of all specialties. Furthermore, as @Dr.Patient said,
Until there is at least a one month rotation during medical school in all medical schools, and in residency training (primary care) for MECFSFIBRO, this attitude of physicians will not change.

Until such doctors become the majority of practicing doctors (which will not happen in my lifetime), or unless a simple, standard treatment for ME/CFS is discovered and adopted, we will face the problems we do.
...and because this disease does not belong to any medical specialty, we are left behind, sick and severely sick.

Technically, it belongs to neurology; both the CDC and the WHO classify it as a neurological disorder. But you could probably count on the fingers of one hand the number of neurologists who have a good understanding of ME/CFS. A large part of the problem is that although ME/CFS may have neurological roots, it involves many other major body systems as well.

Dr. Jay Goldstein recognized this problem, and recognized that it exists for a number of illnesses, such as ME/CFS, FMS, IBS, MCS, CSS ("all the esses", he said), etc. So he created a new branch of medicine called neurosomatic medicine, which covers those illnesses that have roots in the brain, but effects throughout the entire body. This is the medicine that he practiced, and practiced quite successfully. Unfortunately, it requires a specialist's knowledge of neurology, psychiatry (essentially biological), immunology, and endocrinology. There aren't many doctors with that kind of knowledge, and Dr. Goldstein has had no successors. But he did leave books...

Amen.
 
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