TTT results back, no follow up? And update

[RecipeForDisaster]

I'm pretty discouraged... it turns out that two of my doctors have had my TTT results since 2/6 and I have talked to one (cardiologist) several times since then with no mention of it. The other just hasn't contacted me. I figured the results weren't in yet. All I know is that the specialist isn't booking me to see him which I find very discouraging. I thought he might be my answer. He just "made recommendations" to my other doctors, who don't know much about dysautonomia. Since he is booking 9 months out,  I was really hoping to at least get an appointment. I can't imagine that I don't have any form of dysautonomia... I don't think they tested my (lack of) sweating during my TTT as it said they would. All I know about the results is that I had a bunch of heart rates and blood pressures that triggered alarms.... I only saw 1 BP result under 90 but I couldn't see the screen for 99% of the time.

I'm doing worse, also.... today I've been out of bed since 2am due to my pounding heart, I've had more days when I didn't ever get to sleep, I'm collapsing more frequently and my baseline BP has gone down. Walking the other day my heart rate was 161 (while on 150mg diltiazem). I believe that my palpitations are much worse when I have very low BP, and it didn't seem that diltiazem ever really affected my rate, so my cardiologist just switched me back to metoprolol succinate ER 25mg but trying twice daily, maybe three times, as I seem to metabolize it very quickly. My primary is working on the prior authorization for genomic testing for medications. 

I am very fit and lately I am collapsing (clammy and nauseous) after every walk, predictably. I tried to go 100' the other morning and my legs wouldn't hold me up. I'm constantly toppling over into walls and furniture, just very shaky and weak in a faint sort of way. However, I feel lousy at night when I'm trying to sleep, so lying flat doesn't help that much. I found an interesting study about hypotension and insomnia.

When metoprolol wears off, I feel worse than ever... tachycardia and chest pain, usually waking me at 3am when I take it at 9pm(that's when I go to sleep, since I'm so tired). I think it would be a good solution for me if I could get it to a steady level. It helps lessen the pounding although I don't believe it ever changed my rate. One of my doctors believes that my issue here is tons of circulating catecholamines and that drugs can't override it... but I'm hyPOtensive so I don't know how that would be likely.

The specialist came highly recommended and I don't know that I'd try to get in with another local Boston neurologist after this. The recommendations he made must not be too different than what we're doing since I wasn't contacted by either doctor about any changes.... and right now we are just trying to mask symptoms and grasp at straws.

[kalamazoo]

Ask for copies of your records, of EVERYTHING and use the internet to help you. It'll open your eyes, but may also make you anxious. And I don't mean this as any type of doctor recommendation, I just mean this is what I would and have done several times. Doctors have a million patients and it's easy to get pushed aside. I analyze my own labs all the time. It can be eye opening to different results and might give you some answers. But never take anything without doctor's word as concrete. Just get your own results and see what you can find. 

[Bigskyfam]

Hang in there! Yes copies of your med tests and appointments is great... In the end hopefully you can reflect on how far you've come. Keep on top of things best you can. I find it's easier to send electronic msgs than phone messages through a nurse or office staff... If that is available. Stay hydrated, rest and be seen in the interim. Keep us posted. 

[RecipeForDisaster]

Thanks. I'm really not an anxious person and I'm in healthcare so I understand my paperwork. Just hate it when I'm sort having the ball dropped... I'm doing so poorly and if there's something I could be treated with, I wish I knew that on the 6th when the results were available. 

 

I'm drinking 3-4L of water and tons of salt. I don't think it's helped and interestingly I have craved salt for ages, and never got thirsty so didn't drink much for my whole life. Still trying to stay fit but it's complicated when you collapse afterwards!

 

My problem is often that I do know what I need, based on labs or whatever, and can't get it ordered (even stuff as innocuous as blood work!), or I can't "make" a doctor see me, in this case. I don't know who can help with my autonomic issues... I would like to have the genomic testing for pharmaceuticals and I can't get that ordered either. It's sad.

[Guest KiminOrlando]

He thinks you have too many catecholamines based on the blood he drew during the TTT? This shouldn't be a guess. They were able to measure mine. They can mess up the draw and skew the results or meds can interfere, but my doctor didn't 'think' he knew. He knew. He has also retested years later by making me stand in his office for 10 minutes and brought someone from the lab over to draw blood when and how he says. Evidently, this test is very sensitive. 

The difference for me was that I did the TTT without being on any meds and was drinking normally with normal salt intake. I think when we start treatment before we get an official test documenting the situation, it doesn't show true results, so maybe doctors don't see it as being as debilitating as it really is.

I am hypo POTS and had a high level of catecholamines due to a med I was on. It is possible. I went off the med and the catecholamine levels dropped. There are other ways too. 

I went to a well-known hospital for diagnosis initially and couldn't even get put on Florinef. Sometimes you just have to find someone else. I ended up at Vandy and the first thing they asked is why didn't ***** put you on Florinef? The Vandy doctor just shook his head and wrote the script. Things only got better from there. It has been 10 years of trial and error since then. All we do is treat the symptoms, but I think that is all they can do. 

Sometimes asking the right questions can spark action. Why am I not a candidate for Florinef? That would let them explain how it works and why it won't work in your case. You may already know the answer, but it gets them thinking through the process, and it lets you know their reasons. The first place I went was more worried about my BMI than whether I could stand up. I knew to dump him. 

Don't give up. 

Kim

[RecipeForDisaster]

My cardiologist didn't run the TTT, the neurologist (Dr. Gibbons who isn't following up with me) did. There was no blood drawn. I wasn't taking anything that could change my levels, though  

I wasn't really being treated before my TTT (nor now, except for the metoprolol I'm back on), just taking supplements, some of which did seeem to broke. But, my BP is always higher when I'm stressed from traffic, parking, etc. so it would be hard to see my real stats. I don't understand how my body can bring up my BP when I'm annoyed but when I'm sitting here 76/50 and nauseous on the floor... it can't? I was hypertensive most of my life so I feel lousy even at 100/70. 

Other meds have given me edema, so maybe that's why it hasn't been recommended. I'm also not seeing anyone who would likely prescribe it... my primary doesn't get it and my cardiologist just wants to fix my heart. I think he tries but doesn't really understand autonomic issues. He has no idea why I'm hypotensive and tachycardic.

Thanks for the encouragement! I will keep pushing... I just want a doctor I can trust who understands this. I should have my results in hand today. I don't expect POTS but if nothing autonomic came up I'm going to scream. It just can't be. 

[RecipeForDisaster]

My primary said that the TTT results are simply "normal". That just cannot be. All of those hours of testing and everything was great? I know my blood pressure was low, even at the end of the test when I was leaving after sitting for a while, it was below 90, and my heart rate was high. The questionnaire they gave me raised a ton of red flags. I can believe no POTS but seriously everything is supposed to be like this?? Maybe they don't read the questionnaire if you don't come up with POTS??

[Guest KiminOrlando]

Hmmm.... I am curious what they call normal. Would they give you all of your BP and pulse readings and any O2 readings taken during the test so you could take them somewhere else? You may have to pay for them. They should have drawn blood at the end to check catecholamine levels, which may be key for you.

I know it is frustrating. I passed out in my TTT and all I was told was to get on a treadmill because it was deconditioning. It was years later before I found someone to help me.

Keep at it.

Kim

[RecipeForDisaster]

I'll definitely get the results, but Dr. Gibbons is supposed to be the master in this area (Boston) , so I don't know who I'd take the results to. I am very curious about the low BPs during the test. I guess those are "okay". They never did draw blood during the test. I'm hoping I can get someone who's good at figuring this out. It has to be autonomic with the temperature, sweating, BP, tearing, etc. issues. 

[SarahA33]

Hi. Just wanted to say I'm sorry that your going through a rough time right now. It's really frustrating finding the appropriate medical care for our condition. Many of us need to travel to find a specialist that can help. I can't remember if I sent you a list of specialists in MA? If I didn't please let me know and I can do that. Maybe It could be the doctor you saw for your tilt table isn't accepting new patients? 

Also, some doctors perform catecholamine labs during a tilt table, but most have you go to a regular blood draw lab, like quest, to have it done. The protocol is typically to lay flat, free of stress, for about an hour, and then have your levels measured. So your primary or cardiologist can order this. Perhaps you could then send these results along with your tilt back to the Dr. Who did your tilt or another specialist? 

[SarahA33]

Hi again. You may find this past thread helpful:

 

[Debbie Rose]

Hi, so sorry you are struggling. My TTT showed positive with BP of 54/42 and heart rate of 120 at the end and yet since I didn't "pass out" my doctors were reluctant to call it "Syncope". But whether it is caller vasovagal near syncope or neurocardiogenic near syncope, I have NCS.  It took me forever to find an expert and then once I did it took me 2 other doctors to get me going in the right direction. There is a new Specialist in NC and she is an "EP Cardiologist" which is an electrophysiologist cardiologist. She is booked 9-12 months ahead for new patients and I only see her every 6 months. 

My first year was anxious and very symptomatic all the time. For me I have a resting heart rate of 45-55 so when my heart races-it may only be 95-115 but it is pounding and uncomfortable as is the chest pain. This past year has helped me change how I do things. MY RECLINER IS MY FRIEND !!!

I get up from 30 degree recline to sitting upright and then a slow stand with a 5-10 second pause at standing and then walk... I can spend 20-30 minutes doing things now without symptoms. But if I push it, my fingers start to tingle a bare minute before other syncope symptoms start. And so back to the recliner and into the 30 degree decline. I may need to rest anywhere between 10-40 minutes and then go again.  

I keep up with my fluids and salt. and I am on fluronef. My biggest flaw is not wearing my compression stocking and clothing. I also eat small serving and never eat an hour before bed-these cause my heart to race and pound.

If I over do it in a day, the next day I am very fatigued with fuzzy brain and opt to do less....its a delicate balancing act. But if you start slow and work up to it you will find your tolerance levels and where to stop before symptoms get worse. It is frustrating and very limiting but I can only do the best I can. I can not work because if I sit upright or stand for more than 30 minutes I start with the symptoms which would lead to syncope if I let it. I can even go out to shop now if it is close by and I get just a few things....things to look forward to.

I hope this helps

Debbie

 

[RecipeForDisaster]

Thanks. I was very fit with a low resting heart rate, too, so 85-110 feels uncomfortable at rest. Ditto my blood pressure which used to be high and so 100/60 feels awful. I won't even describe 76/50 as it was the other day.

I can't decide if I should push to see another autonomic neurologist or if the "normal" TTT will cause her to dismiss me. 

I still walk and ease into things, but I have "surprise" near syncope even when I'm doing everything right, and after every walk lately. I'm doing everything except florinef and I do think the metoprolol is helping some aspects... mostly the palpitations and insomnia which is secondary to palpitations. It hasn't helped my pressure or how often I almost faint or collapse.

[Guest KiminOrlando]

One doctor's 'normal' TTT is another doctor's diagnostic tool. It is all in the eye of the doctor. Take the data to another doctor, not the interpretation of the data. 

The big hurdle with dysautonomia is that not only are you sick, but you have to fight to get help while you are at your sickest.

Don't give up. If you know something is wrong, then something IS wrong.

I remember those days. If I could pick up the sword and fight for you, I would. It is such a difficult time.

Kim

[RecipeForDisaster]

Thanks. I've been encouraged to try to see Dr. Novak or Dr. Hohler. I'm not sure I can get my primary to refer me out again, though.The support here has been really helpful. Part of the issue is that Dr. Gibbons who ordered and interpreted the TTT is pretty well respected. But obviously it isn't normal that I can't get my blood pressure to stay at a level where I can function, and I can't stir a bowl of batter without blacking out. I still haven't seen the results... I am hoping for something more concrete and treatable than "idiopathic hypotension" and tachycardia. I am grateful for my cardiologist who is trying to help me. 

[Debbie Rose]

Keep plugging along-second opinions are acceptable in the science of medicine-it is not a perfect science.

For me, since I did not pass out, they diagnosed me as Neurocardiogenic "near" syncope!! Try convincing people its a real "thing"!!!

Near or full out syncope-you still have symptoms and feel horrible

I hope things come together for you soon

[RecipeForDisaster]

Thank you. I found a cardiologist who specializes in autonomic dysfunction, and am going to see Dr. Novak in August. I did get my results and they are soooo vague, 1 page, "normal this normal that" when I know my BP was setting off alarms under 90, all over the place. I don't consider that normal but that's just me. It's interesting to note that I've talked to others who said they had normal TTT results with the same laboratory and then came up positive somewhere else. No doctor present and no meds given. Or maybe somehow this isn't autonomic (I've always said I don't think it's POTS) but then no one knows what the heck it is. I'm sick of "idiopathic" anything! I just want answers and my life back. I really don't believe anyone realizes how bad we feel... they just compare it to "tired"