Transcrainial Doppler test - When is it appropriate to do this test?

[Peyt]

Hi,
I have gone to 2 Doctors who specialize in POTS. Both of them think I need to do a Tilt Table test. One thinks I need to also do a Transcranial Doppler test and the other one does not.
Can any one tell me when is it usually appropriate to do the Transcranial Doppler test?
Or what is the purpose of that test?

Any thoughts for those who know about the TD test is appreciated.
Thanks
Peyt

 

[bombsh3ll]

I would definitely have the transcranial doppler with your tilt if possible. This objectively demonstrates whether you have reduced blood flow to your brain when upright. It can be very helpful to have this documented and to obtain treatment should your tilt table values be normal or close to normal.

I do have a diagnosis of POTS from an active stand test rather than a tilt, but have also considered a TCD to assess my cerebral blood flow. Unfortunately for me it is too expensive and the only facility too far away.

 

[Peyt]

I would definitely have the transcranial doppler with your tilt if possible. This objectively demonstrates whether you have reduced blood flow to your brain when upright. It can be very helpful to have this documented and to obtain treatment should your tilt table values be normal or close to normal.

I do have a diagnosis of POTS from an active stand test rather than a tilt, but have also considered a TCD to assess my cerebral blood flow. Unfortunately for me it is too expensive and the only facility too far away.

Thank you,
This is my gut feeling too..
At this point I have both tests scheduled, I think I am going to cancel the one that does not want Doppler done and go with the other one even though it would mean 1 more week of delay.

 

[Gingergrrl]

@Peyt I was curious, where do they offer this transcranial doppler test along w/the TTT? Also, is there a test that shows if someone is not getting adequate perfusion to heart and lungs while standing (vs. to brain)?

 

[Peyt]

@Peyt I was curious, where do they offer this transcranial doppler test along w/the TTT? Also, is there a test that shows if someone is not getting adequate perfusion to heart and lungs while standing (vs. to brain)?

I am getting mine done at Scripps Clinic in San Diego... But it took almost 2 months from seeing the doctor who recommended both tests to get the date to do the test.

The other Doctor is in LA, as soon as I saw him, they were able to give me an appointment the next week for the Tilt Table test.... (but no Doppler).......... I even told him I get headaches all the time but he said no Doppler test is needed. Now I wonder if they even have the facility to perform that test in LA.

In fact the reason I decided to go see the Doctor in LA was because the one in San Diego was so hard to make an appointment with and also slow process to get the test done...

 

[Gingergrrl]

@Peyt I was curious (and please reply via PM if not comfortable posting names) but who are the Cardios that you saw in LA and at Scripps?

I have a Cardio in LA (and I live in LA) but I have not seen him in person in about 1.5 yrs. I did a one-time consult w/a Cardio at Scripps in 2015 and he was the first doc to truly pick up on my muscle weakness, and said it was strikingly different than his pure POTS patients, even though he 100% confirmed I had POTS. He actually compared it to muscular dystrophy (which of course I did not have).

Long story short, I was found in 2016 to have several autoantibodies and with IVIG & Rituximab my muscle weakness is literally gone. I can open packages, doors, and bottles and can walk around my apt w/o motorized wheelchair and take shower and cook food and do things I never dreamed I'd do again. My MCAS also in remission.

The remaining problem for me is POTS/Dysautonomia. My main doc feels I have Autoimmune POTS and the current treatments will continue to improve it and this is my hope as everything he has done since we found the autoantibodies is nothing short of a miracle.

I would just love to find a local Cardio or POTS doctor to be part of my team since my main doc is 7 hrs north of me and my MCAS doc is close to retirement and he is the prescriber of my IV's so I can do them locally. I saw three Neuros in 2016 and all three were beyond useless.

 

[bombsh3ll]

@Peyt I was curious, where do they offer this transcranial doppler test along w/the TTT? Also, is there a test that shows if someone is not getting adequate perfusion to heart and lungs while standing (vs. to brain)?

I have read on DINET about people in the US having a haemodynamic test at the large clinics eg Cleveland, which I believe assesses this - basically your blood is labelled with a tracer and they see where it flows when you are lying vs standing.

Long story short, I was found in 2016 to have several autoantibodies

Would you mind sharing which antibodies you had tested and which lab? I have POTS too but no muscle weakness, but am interested in excluding autoimmune POTS causes.

 

[Gingergrrl]

@Peyt Thank you for your PM answering my questions and I'm sorry for my delayed reply to it and hope to get to it soon! We have the same Cardio in LA which is what I had wondered.

I have read on DINET about people in the US having a haemodynamic test at the large clinics eg Cleveland, which I believe assesses this - basically your blood is labelled with a tracer and they see where it flows when you are lying vs standing.

Thank you @bombsh3ll and I am guessing that it is only large clinics like Cleveland (or maybe Vanderbilt?) that do testing like this. I am allergic to contrast dyes and my doctors agree that I was not getting enough blood perfusion to my heart and lungs when I stood up so I am just going with the assumption that this is true (based on my symptoms and prior treadmill test showing ischemia on EKG in 2014 and abnormal V/Q scan also in 2014). I am significantly improved now, post IVIG and Rituximab, although nowhere to pre-illness levels yet.

Would you mind sharing which antibodies you had tested and which lab? I have POTS too but no muscle weakness, but am interested in excluding autoimmune POTS causes.

Sorry I missed your question before and my autoantibodies are the two Hashimoto's Abs (from all labs since 2013), N-Type Calcium Channel Autoantibodies and anti GAD65 (from Mayo's lab), and 7 of the 9 Beta-adrenergic and Anti-muscarinic/cholinergic Abs (from blood sent to Cell Trend Lab in Germany). I also had positive ANA titer 1:160, speckled pattern. My doctor is certain that I have "Autoimmune POTS" and that if we kept testing for more auto-antibodies, we'd keep finding more but we stopped due to the cost and b/c it would not change my current treatment plan. He feels I have a B-cell autoantibody driven disease that started off viral and switched into autoimmunity. Hope this helps.

 

[bombsh3ll]

Thanks for the info on antibodies, I have thought of doing the cell trend panel for POTS. If something came back positive though it would probably be really difficult and expensive to access the treatments you are doing in the UK.

The places I have read of people having the haemodynamic test are Mayo and Cleveland clinics. It doesn't exist here in the UK, but I feel my problem is low blood volume rather than a normal amount that is pooling somewhere.

 

[Gingergrrl]

Thanks for the info on antibodies, I have thought of doing the cell trend panel for POTS. If something came back positive though it would probably be really difficult and expensive to access the treatments you are doing in the UK.

No problem! Even here, when I tried to show the Cell Trend tests to Neuros, they literally would not even look at them b/c the testing came from Germany vs. the US (which was absurd IMO). Luckily my main doctor and MCAS doctor who are both open-minded took the tests seriously, in conjunction with my Mayo tests, and helped to build a case for my insurance company for IVIG and Rituximab. The biggest hurdle has been my insurance company.

The places I have read of people having the haemodynamic test are Mayo and Cleveland clinics. It doesn't exist here in the UK, but I feel my problem is low blood volume rather than a normal amount that is pooling somewhere.

I suspect Mayo, Cleveland and maybe Vanderbilt would be the places who could do testing like this. I thought my problem was low blood volume (and it still might be and I have never officially been tested for this) but we now believe that my main problem is autoantibodies attacking the beta-adrenergic, anti-muscarinic, and calcium channels all of which led to the muscle & breathing weakness, POTS, and overall dysautonomia.

 

[bombsh3ll]

I'm so glad you've found a treatment that is helping. Cell Trend is one of my next avenues to explore - was it difficult to organize shipping the blood to Germany?

 

[Gingergrrl]

I'm so glad you've found a treatment that is helping. Cell Trend is one of my next avenues to explore - was it difficult to organize shipping the blood to Germany?

It was semi difficult b/c I had to go to a specialty lab and I was sending the blood from Los Angeles so I had to use a Fedex Clinical Pack with overnight international express service. I believe it will be much easier sending the blood if already in Europe. But mine arrived within 48 hours and the head of Cell Trend Lab told me that even 72 hrs was still okay (but not much more than that). The clinical pack kept it cold. When we repeated the test, my doctor sent my blood from No. CA as part of an immune study so I did not have to do it (but am assuming he used a similar Fedex Clinical Pack). Hope this helps.

 

[Peyt]

Hi All,
Got my test results back today. Oddly enough I don't have orthostatic intolerance. However, a part of the test included a sweat test which shows I have small fiber neuropathy.
I have attached both tests (removed all names for privacy reasons)
Would love to know if anyone can give me any further insight.

My doctor is sending me to a Neurologist who is also a D.O.
Also, I am not sure if I mentioned earlier but I have a form of IBS called SIBO which I am currently taking anti biotics for it. My doctor also prescribed a medication called Cromolyn which is suppose to help prevent any reactions from foods I eat. I have not started it yet. He said this drug does not get absorbed which sounds good but I won't know until I try it.

Let me know your feedback. Thanks