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FileTrekker

POTS leads to blood clots / heart attack / stroke?

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23 hours ago, bombsh3ll said:

 My endocrinologist explained that as it retains free water only, not sodium, most of this passes into cells so very little remains in the intravascular space.

Are you saying most of the free water retained passes into cells with very little remaining in the intravascular space? Or sodium? I'm thinking the former since potassium is the major intracellular cation but just trying to clarify. 

Since I also have primary Addison's, I have to carefully balance my own mineralocorticoid intake with electrolyte balance, etc. I've gained some additional insight from your posts and I'm trying some different things. Thanks. 

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4 hours ago, FileTrekker said:

It seems like a LONG way for me to travel in my current condition and it would cost me a lot to do so if they don't even know as much as you or I probably do. 😕

What treatments have you tried so far FileTrekker? UCLH were not able to help me as I have already tried every known treatment bar regular IV fluids which is not available in the UK, but that doesn't mean they couldn't help you as some meds do help some people. If there is stuff you haven't already tried they may be worth a visit. 

I live in Scotland so had to fight for health board funding to go there but once that was approved I was also reimbursed travel costs, however it was expensive paying out of pocket for the train and taxis in the first place. 

I am still glad I went as I got supine and upright catecholamines tested which will help my own understanding of what is going on in my case - I believe mine is secondary to chronic profound volume depletion due to having undetectable renin, aldosterone and ADH which are the hormones needed to retain fluid, with the sympathetic activation as an appropriate (albeit extremely uncomfortable) compensatory response to hypovolaemia.  I also got tested for antibodies to the acetylcholine receptor, which I doubt will be positive but if so may be amenable to immunological treatment. 

B xxx

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1 hour ago, toomanyproblems said:

Are you saying most of the free water retained passes into cells with very little remaining in the intravascular space? Or sodium? I'm thinking the former since potassium is the major intracellular cation but just trying to clarify. 

Since I also have primary Addison's, I have to carefully balance my own mineralocorticoid intake with electrolyte balance, etc. I've gained some additional insight from your posts and I'm trying some different things. Thanks. 

It is definitely the free water that passes into cells. I have read up on this independently as well as relying on my endo's word. Sodium continues to be urinated out (excessively with no/insufficient aldosterone), just accompanied by less water. 

I have tons of cortisol so no addisons, but I don't produce aldosterone. Unfortunately I didn't tolerate fludrocortisone at varying doses, so I am essentially like an addisons patient treated with glucocorticoid but not mineralocorticoid replacement. 

Do you take florinef and if so what dose?

Also are addisons patients on adequate florinef advised to consume bucketloads of salt in addition like POTS patients who use it? I was salt loading at the time but would have thought this wouldn't be necessary in the case of physiological replacement of a deficient hormone - if adequately replaced you should just be able to eat & drink normally right?

I am considering a retrial at a very low dose if I cannot maintain my electrolytes in range now I am off licorice root (which essentially tricks your own cortisol into acting like aldosterone) but stopped working & can be damaging over the long term.

B xxx

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8 hours ago, blizzard2014 said:

I'm sorry about the IVC filter. Those things are only supposed to be used temporarily. Like if you are in a high risk situation and cannot be placed on blood thinners. I know what you ment when you said no happy ending lol. I was just trying to make a rough joke from the Asian massage and happy ending jokes. Yeah, some of the Autonomic Dysfunctions are bad, like pure Autonomic failure. I did some reading and was kind of freaked out. The Diabetes one really scares me because I had Diabetes for a while before diagnosis and that really damages the nerves all over the body. 

At this point the greenfield filter is permanent unless I have it surgically removed, which is only indicated if there is a problem. There's a doctor at Stanford that specializes in removing them minimally invasively, Dr Kuo, but normally it's a big deal otherwise. My vascular DR is doing a ultrasound on it tuesday to check it out. It's been in almost 20 years now. 

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53 minutes ago, bombsh3ll said:

It is definitely the free water that passes into cells. I have read up on this independently as well as relying on my endo's word. Sodium continues to be urinated out (excessively with no/insufficient aldosterone), just accompanied by less water. 

Thanks for this clarification. That's what I thought but just wanted to make sure.

That is odd that you retain corticosteroid production but not aldosterone. Why do you not tolerate fludrocortisone? Do you take hydrocortisone instead because of its mineralocorticoid properties?

53 minutes ago, bombsh3ll said:

Do you take florinef and if so what dose?

I usually take florinef at a dose of 0.05mg per day but have been experimenting with 0.1 mg to see the effect on my RAAS system. It's very difficult for me since I have to do this balancing act on my own. It's also complicated by my gastroparesis, which is extreme at times, impairing my absorption of prednisone. In those cases I have to inject solu-cortef two or three times daily, which has much more mineralocorticoid activity than prednisone. So if I take florinef at all, I have to decrease the dose. Most of the time If I'm taking oral hydrocortisone, or injecting it, I don't need florinef, or I don't think I do. If I'm having to inject solu-cortef, I'm not sure the florinef is even being absorbed but some meds do seem to be absorbed better than others. I have to work this all out on my own depending on how I'm doing. It's a very dynamic situation with me.

53 minutes ago, bombsh3ll said:

Also are addisons patients on adequate florinef advised to consume bucketloads of salt in addition like POTS patients who use it? I was salt loading at the time but would have thought this wouldn't be necessary in the case of physiological replacement of a deficient hormone - if adequately replaced you should just be able to eat & drink normally right?

Frankly, Addison's is rare enough that they don't advise you much on salt intake, or even the dose of florinef. It's not like diabetes where everything is fine tuned because so many people have it and it's studied so much. When you go in with Addison's, it's sort of like, well, you're still alive, that should be good enough for you. Not exactly fine tuned. And this is my experience over more than 30 years with it and several different endocrinologists, even really good ones. The thought of adding the POTS in the mix for advice is laughable to me. Normally, if I'm getting enough mineralocorticoid replacement in some form, I don't worry about salt loading. If my heart starts beating too irregularly, I'll eat a banana and drink some Gatorade and that usually takes care of it. But I can become very unstable with all of my problems and I'm pretty much on my own to try to figure it out because it involves too many different specialties to combine all the boxes I fit into. I'm lucky to be a biochemist with more ability to research and understand the mechanisms than most, but it's still quite challenging. 

 

53 minutes ago, bombsh3ll said:

I am considering a retrial at a very low dose if I cannot maintain my electrolytes in range now I am off licorice root (which essentially tricks your own cortisol into acting like aldosterone) but stopped working & can be damaging over the long term.

B xxx

I'm very interested in your results from trying to manage your electrolytes with your problems. I don't know where you live but in the US we have a service called request-a- test where anyone can go in a pay for a test and have it drawn and processed just like any lab test requested by a dr. You can have results sent to your dr or not. A basic electrolyte panel, protein and liver enzymes is only $29 so I sometimes just do that rather than getting a dr.'s appointment and all. It's just easier and more timely. Turnaround is less than 24 hours. With my lab background, I usually know what I need to order and what the results mean.  

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1 hour ago, toomanyproblems said:

I don't know where you live but in the US we have a service called request-a- test where anyone can go in a pay for a test and have it drawn and processed just like any lab test requested by a dr. You can have results sent to your dr or not. A basic electrolyte panel, protein and liver enzymes is only $29 so I sometimes just do that rather than getting a dr.'s appointment and all. It's just easier and more timely. Turnaround is less than 24 hours. With my lab background, I usually know what I need to order and what the results mean.  

I have used Life Extension to go to Labcorp or go to Sonora Quest Labs. Some tests are pretty expensive, like the ones for cancer and autoimmune stuff, but the basics are reasonable. 

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3 hours ago, toomanyproblems said:

Why do you not tolerate fludrocortisone?

The first time I took it I had only had POTS for 5 days (my onset was v sudden). I had identified my symptoms, orthostatic changes and demographic as consistent with POTS after 3 days although technically symptoms need to be present for 6m to diagnose. (It actually took me just over 3 years to get a formal diagnosis from a specialist.) That first admission I begged for fludrocortisone in the hospital in the hope it would help me stand without passing out, and they grudgingly threw a box at me just to get me out the door, with no dosage instructions, follow up or electrolyte monitoring. 

I took the first tablet, didn't feel any better & got really bad stomach pain (later I realized that having been in hospital I had missed my usual omeprazole & I never had this side effect again). Also the "steroid card" they gave me made for scary reading, & I had only been ill for 5 days at that point so was still hopeful it would go away, & I decided not to take any more at that time. 

Months later, no better, I decided to give it another try as we had a holiday booked & I was willing to try anything, but I couldn't get a GP appointment in time. I did however at that time learn that licorice root, a herbal remedy had similar effects and could be bought without a prescription. I didn't really expect anything from a herb but it was inexpensive & I felt worth a try nothing to lose. Well the initial effect was miraculous, after 8 months chairbound I could stand again for a short while and also walk any distance, so I stuck with that until the effects waned after about a year. At that point I decided to try fludrocortisone again. I had a private test done showing next to no aldosterone, & even before starting the licorice root I'd had low sodium, high potassium, which were ignored once the cortisol stim test came back normal. 

I decided to switch over from licorice, but never managed to get onto the fludrocortisone properly as this time although my stomach was ok with the omeprazole it gave me splitting headaches, worsened chest pain, vasoconstriction & high BP & worsened non-psychogenic sense of anxiety/doom. It also didn't help me stand. 

I had several trials at different doses, all of them since that time in addition to the licorice root, which I was terrified of stopping. 

I now know that licorice root can maintain its effects for at least 2 weeks after stopping, so that may have been the mistake to combine the two. Other than the first tablet I never tried it free of having licorice in my system. I also didn't know that first time that fludrocortisone effects can take weeks to build up, so was bitterly disappointed when that first pill did nothing. Licorice however did work within a couple of hours when I first took it.

I have now stopped both licorice root and salt loading so if I do try fludro again, the result may be different. I would start at 1/4 of a tablet, and take at night rather than am in order to sleep through the worst of the side effects and hopefully retain more fluid overnight.  

I am lucky that I can get basic blood tests (sodium potassium) done for free at my GP but it can take up to a week for the result so you are always playing catch up if something is off or meds need to be changed.

3 hours ago, toomanyproblems said:

Do you take hydrocortisone instead

No, I have tried it but am not surprised it didn't help because I already produce high levels of cortisol myself.

I am really shocked that addison's management is so poor. It is a rare condition but I remember it being covered in depth at medical school & it seems to be something most doctors are aware at least exists and what the treatment is as opposed to POTS.

B x

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On 3/17/2019 at 12:13 AM, FileTrekker said:

I am aware of him but I can't afford to see him privately.

I believe he does see patients on the NHS also at York but as I am in Greater Manchester he is not under my NHS trust.

@FileTrekkerNot being under the care of well under the NHS,  5 minute appointments are not on and nor is shouting at you.   I would ask at the front desk how long the appointments should be.  Talking to the Patient Advice & Liason Service may help.   Taking in a support person may be helpful.

http://www.potsuk.org/

http://www.potsuk.org/doctors

I would go in armed with this: https://www.nhs.uk/conditions/postural-tachycardia-syndrome/  

requesting for testing in order for diagnosis.   Go in armed with examples.

Sorry off topic.

 

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FileTrekker, how are you doing?

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On 3/23/2019 at 8:47 AM, Shepard1 said:

@FileTrekkerNot being under the care of well under the NHS,  5 minute appointments are not on and nor is shouting at you.   I would ask at the front desk how long the appointments should be.  Talking to the Patient Advice & Liason Service may help.   Taking in a support person may be helpful.

http://www.potsuk.org/

http://www.potsuk.org/doctors

I would go in armed with this: https://www.nhs.uk/conditions/postural-tachycardia-syndrome/  

requesting for testing in order for diagnosis.   Go in armed with examples.

Sorry off topic.

 

The appointments with GP's are supposed to be 10, with cardiologists 30 minutes, but anyone who uses the NHS will tell you this is wildly unrealistic. Doctors in and out, Cardiologists 5, 10 minutes or so if you're lucky.

17 hours ago, JimL said:

FileTrekker, how are you doing?

Ok. Just been staying off the internet as best as I can as it just seems to wind me up more than anything.

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10 hours ago, FileTrekker said:

The appointments with GP's are supposed to be 10, with cardiologists 30 minutes, but anyone who uses the NHS will tell you this is wildly unrealistic. Doctors in and out, Cardiologists 5, 10 minutes or so if you're lucky.

Ok. Just been staying off the internet as best as I can as it just seems to wind me up more than anything.

Peace brother, just wondering how you're holding up. 

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I've never heard this... I remember when I first was dx'd with NCS/POTS and many other little things, my cardiologist was pushing hard for a pacemaker/implantable defib.  And I do mean, pushing HARD, like needs to be done immediately or YOU WILL DIE!!!!   I've coded before for other non-dysautonomia reasons, and I certainly was in much better health than then.  After doing some research and writing to the researchers of published articles, the one responded something along the lines of, "While passing out and temporary asystole are visually alarming, we've never actually had a patient die from this." He did say that some of the co-morbidities might have negative effects, but I wasn't going to drop dead from POTS.  

It was a marked difference from what my own cardiologist was pushing.  I skipped the pacemaker/defib surgery.  That was 20 years ago.  I'm still here.  That would have been at least 4 surgeries I've avoided. (1 for the original pacemaker + 3 replacement pacemakers/batteries) Still very happy with that decision and thankful for the research Dr's advice. 

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