Ejection Fraction is 76%, LV is Hyperdynamic - Hyperparathyroidism?

June 19, 2023 8:41 PM

Prefacing with IKYNMD, but I am, for the time being, researching and trying very hard to survive in Israel, against all odds. The odds being that I have hyperparathryoidism and cannot find a surgeon to do the surgery in Israel being that this is a *wait and watch* situation according to the guidelines in the Ministry of Health, and my calcium levels are only in the low 10's. My crappy insurance does not let me choose a surgeon. My heart is suffering. Read on.

About 6 years ago was beginning to experience SVT's. Went to hospital where they found I had a few arrhythmia issues, due to a *faulty electrical node* and discharged me. Following that I found out I was severely Vitamin D deficient and from there I also found out that my PTH was very high. My suffering was intense, insomnia, gastrointestinal disturbances, pain, tachycardia, anxiety, fatigue were setting in, went to 3 endocrinologists, heads of departments in 3 different major hospitals for help. One told me to do calcium/vitamin d/bone density scans which I did - ionic calcium high, vitamin D by that time was rising due to supplementation but still low and bone density showed osteopenia.

Went back to the professor who sent me on this trek with the findings and she still wasn't impressed due to my calcium only being in the low 10's. At that point I figured I should discuss this with a competent surgeon, but this too proved a bit of an impossibility due to my insurance - the national health fund (sick fund actually) which prevents me from going to another regional hospital. I self-referred to one surgeon, he said he was hesitant also due to the calcium (normocalcemic - apparently the approach is wait and watch) and I then asked a local group about a competent surgeon who did parathyroid surgery in Israel and who is also in a public hospital. I received the name of a surgeon in Rambam. Went to see her with my files, later sent her the Sestamibi. After a month, she notified me that she would take my case and do the surgery after conferring with her department. Then I got the notice that the insurance wouldn't cover it. Yep, due to logistics - Rambam not being in the area where I live.

So I figured I'd move near Rambam. Well, that didn't work either. I've been plagued by SVT's and diminished energy in these last 3 years. I spend my days in a chair basically, hoping I will not die. I go to doctor's appointments and imaging because I have circulatory problems in my hands which basically are bruised and discolored, I have blood abnormalities now (also circulation), and the periodic echos. The last one shows worsening of left ventricular function, hyperdynamic with mitral valve thickening. I've landed in the ER's so many times due to my heart. And gastro infections as well.

I approached the Norman Parathyroid Clinic, did an intake with them, sent them all of my test results, had a phone conversion with the surgeon, he is willing to do the surgery, but there was and is the financial aspect to this - I am living on disability and cannot crowd-source this because I have been living a hermit life my entire life and know no one who can help me with this. I am in a Catch-22 literally. No family or friends. At all.

So what to do? I am taking care of my health in the best way I know. I don't eat meat, only some fish, take supplements, try to stay hydrated and do not smoke or drink alcohol. But my heart is thickening and stiffening. Cardiologists I have seen up to the lockdown have not been very impressed or thought to link the parathyroid issue with my heart or did not have sufficient knowledge to do so.

I know I need the surgery. The question is how given the parameters I am dealing with. I know my heart needs help - and perhaps this condition is reversable with the surgery - but there is no one in the health industry here who is listening. I feel like I am up against a brick wall.

Thoughts. Be gentle. Thank you.

posted by watercarrier to Health & Fitness (10 answers total)

This is not directly healthcare advice, this is advice for navigating beaurecracies with inbuilt obstacles:

Every single health care provider, or insurance person, or government person who deals with these criteria, that you talk to, ask them:
"I know this is your job, and sorry to take up your time, but off the record, is there anything *you* would do or try, if you were in my situation, even as a last resort??"

Write down what they say.
As a follow-up question, ask if they have any colleagues who are more experienced or knowledgeable in the eligibility criteria for this surgery/condition?
Then get hold of that person, ask the same things, rinse and repeat.

Try and find out if *anyone* in your situation has managed to get through the loopholes somehow, and find out how.

Write down who you talked to and what they suggested, and particularly who seemed to know the criteria best.
Because you will then need to check with the people who seemed to know the system best that any method you hear about will actually still work for you, so that you don't say, move closer to Rambam, and then find out that doesn't help or doesn't apply for some reason.
If someone has been dismissive, even just something like, "I'm having to move closer to Rambam for personal reasons (or whatever change is happening that changes criteria), I'm worried that will affect my eligibility for surgery etc, what will happen, will that change my eligible health providers etc?"
posted by Elysum at 9:09 PM on June 19, 2023 [5 favorites]

When your vitamin D level improved, did your PTH decrease?
posted by Iris Gambol at 3:40 AM on June 20, 2023 [1 favorite]

I don't know if anything I have to say about my heart related health will be useful to you.

I had a heart attack on 10 June 2016. One artery had 100% blockage, one had 90%. Both of those required stents. The third artery was treated by expanding a balloon in it. There was a 100% blockage in the 'Widomaker' artery . That stopped blood flow to part of the bottom of my heart. After a sonogram the Cardiologist estimated between 20-25% of my heart was not pumping blood. My Ejection Fraction (EF) number was OK. Despite that, or maybe because of that, I spent 5 nights in the Cardiac ICU before being released from the hospital.

Every six months I get another EF test. The EF number has been better every time. I attribute that to brisk paced 50-60 minute walks every other day - weather permitting - which include going up steep hills.

My only other health problem is a minor one: Eczema that started about 6 month ago.

I'm fortunate that I had private health insurance that covered the costs related to heart attack. Because I have since moved to another country, I had to discontinue that insurance. I'm also fortunate that the my private health insurance in my current country of residence covers anything heart attack related, despite it being a pre-existing condition.

I'm also fortunate that the national health service here must treat non-citizens who are living here after being granted a residence permit. Citizens pay little or nothing for health treatment. Residence permit holders pay fees that are very low compared to what it would cost in the US of A.
posted by Homer42 at 4:39 AM on June 20, 2023

I wish you the best in your getting this surgery because I've been there, this disease affects your emotional well being as well, it's the nature of its insidiousness.

I would try reaching out to all state teaching hospitals and institutions, universities, and finding some guidance from their endocrinologists, since it's likely that they will have a more contemporary view of how to best treat hyperparathyroidism, and may have ways of bending the system to help people in need. (Although it sounds like you may have done this already. Nevertheless, I would encourage you to, if necessary, independently speak with each and every person in endocrinology departments in the entire country, because part of the effort sounds like changing the minds of the institutions themselves. EVERYBODY who suffers from hyperparathyroidism deserves to be treated, not to be left to suffer at their whim. This is an overwhelmingly treatable disease, and the harm they are doing to you is unconscionable.)

Having been to the NPC myself, I will sing their praises endlessly, but they are not the only way to get the surgery you need; they are incredibly efficient at what they do, but they share their knowledge with the world, and the techniques developed there are going to be available to you elsewhere.

Secondarily, I would also speak with my political representatives (local people on up to the top), to see how they might be able to reach out to people in the ministries and hospitals. I would eventually reach out to a lot of people in the Ministry of Health, and go through the same rigamarole: I have this thing, it's treatable, a bunch of people have this thing too, it's mostly treatable for all of them, and keeping people in misery so that you can watch them as they suffer is the worst kind of medical practice. (Kidney stones, these people are inflicting kidney stones on people by not treating! Who does this?)

Additionally, I see that you say "My crappy insurance does not let me choose a surgeon", but is there a way for them to *alter* this insurance for a week, a month, so that you can pick that surgeon who will treat you? Maybe the bureaucracy can manage this somehow, even if they cannot help you directly.

You already know that you need this surgery. Get it by hook or by crook. No matter what else might be going on with your health, physically and mentally, you are already dealing with an extreme burden because of this. I really hope that you find a path that works out! It may feel hopeless at times, but you will probably never regret spent the effort you expend to get treated, because of the increasing emotional, mental, and physical toll this disease will take on you, is ALREADY taking on you.

Feel free to reach out. I'll get back to you when I can. This matters.
posted by the letter at 8:58 AM on June 20, 2023

Oh! Part of your engagement also gets to be on the level of: I've had a consultation with the world-class medical institute about this, the Norman Parathyroid Center, their recommended treatment is surgery as soon as is practicable. I suspect you already had that convo with some doctors, but this should hold some sway with the ministry and politicians.
posted by the letter at 9:26 AM on June 20, 2023

Here are some ideas - apologies if you've already tried them.

- Can you afford/qualify for private insurance as a supplement to your national insurance? That should give you more flexibility regarding care providers.

- Israel has multiple national insurance providers. Does any of the other ones cover surgeons in your area you could work with?

- When your insurance rejected the surgery at Rambam Hospital for being out of area, did you appeal? It may be that they'll approve it if you can demonstrate that no local option is possible, and possibly get documentation from the surgeon stating how important it is. You'll want to talk with administrators both at your insurance provider and at the hospital.

- It looks like NPC is in the US? If so does it charge US prices which are insanely expensive, on top of the cost of flights? Would it be possible instead to afford private surgery in Israel? Also, I'd check if your insurance has any partial reimbursements for private surgery, and, if not, whether any of the other insurance providers does.

- As Elysum said, ask everybody what they'd do in your shoes. Especially the Rambam surgeon who was willing to take your case: what next steps does she recommend?

- Do you qualify for unemployment insurance? If so (and maybe even if not) is there anyone at the social security offices you can talk with - a general counselor, a social worker, or some other kind of advocate? If there isn't, can you try looking for a private counselor or advocate who can help you navigate the insurance bureaucracy?

- Is surgery definitely the right and only option? Given your condition, your repeated ER visits, and your general quality of life at this point, what plan of action are they proposing instead? Doctors often really really hate it when patients come in saying 'I have X' or 'please treat me in the following way' (they shouldn't, I think it's harmful that they do, but it seems almost universal), and also surgery in general has various risks so it can make sense to be cautious. But since your current condition and quality of life are untenable, they still need to actively work towards your improvement; what is their plan?

- On that note, do you have anyone who can accompany you to any of these meetings, whether as an advocate or just as support?

- This is a weird phenomenon, but may be worth a try.

Wishing you good health and best of luck.
posted by trig at 9:39 AM on June 20, 2023

I’m not clear if you understand this, but an ejection fraction of 76% isn’t low and doesn’t suggest left ventricular dysfunction. In fact, it is slightly high, which *sometimes* suggests cardiomyopathy. It’s not evident from your account that anything is seriously wrong with your heart. Arrhythmias can be distressing but supraventricular tachycardia isn’t necessarily dangerous. You say your cardiologists haven’t thought to link your heart issues to your endocrine problems. Are you sure that’s the case? I’m sorry you feel so wretched. I don’t know anything about the thyroid problems you are having but your discussion of your heart problems makes me wonder if you may be having some big difficulties in communicating with your doctors about what’s going on that you might work on. I hope you get some relief soon, whatever is wrong.
posted by reren at 10:09 AM on June 20, 2023 [3 favorites]

Parathyroid disease can manifest with heart-related symptoms. IANAD; I lived it.

Surgery at NPC costs, all-in (excluding flight, room & board), something like $25k USD, which, for a surgery in the USA, is insanely cheap, if you are paying entirely out of pocket [for me, ten years ago, it was, maybe $18k, so I'm estimating; that is not chump change, but IMO, I can't imagine, knowing how much better I feel day to day, that I would ever regret spending even a single penny of this! My outcome isn't your outcome, but mine is not at all unusual for this group.]. The anesthesiologist's bill for the surgery, alone, was... $200 [which is, to my eye, extremely low, it came separately]. Because of their skill at that clinic, most people have a surgery that lasts less than twenty minutes. Afterward, to me, it felt like someone punched my throat pretty hard, but, in my case, by the afternoon, a gigantic mental and emotional weight dissolved, and hasn't come back. They are the real-deal out at NPC, have saved large numbers of humans from an incalculable amount of misery and degradation, and have guided the way for endocrinology to treat this disease about as well as we can right now.

Surgery, if you have parathyroid disease, is probably the best option for most, if not all, people. It will not resolve the rest of all of the medical conditions that you may have, but if you are suffering from hyperparathyroidism, by all means, do whatever you can to get to a surgeon that can do a minimally invasive, radio-guided [as in radioactivity] surgery, because that's the clinically proven way that NPC has demonstrated has extraordinarily good outcomes! (Stating that for the benefit of anyone else who might see this thread in the future, since you already have this well-decided, and are looking for a way to make it happen.)

trig's suggestion of looking into the non-profit Ezra LeMarpeh, is something that I would also endorse, in that such groups exist, and may be able to help you out. Anywhere that you can get that money to get properly treated for this will probably serve you well.
posted by the letter at 2:00 PM on June 20, 2023

Just to note that I meant to say disability benefits above, not unemployment insurance.
posted by trig at 9:40 PM on June 20, 2023

Phone the department in Rambam that does the surgery. Ask which insurance providers cover the surgery and ask for names of physicians that referred to the surgery. Transfer to one of those insurance providers.
posted by mirileh at 6:54 AM on June 22, 2023