Brand New - Have a Couple Questions

[AutoDrive2000]

Hi everyone. Nice to meet you. Although I wish it was under different circumstances.

Two months ago I received a POTS diagnosis from Mayo in Arizona.

I went there complaining of fatigue and new nothing about Pots.

They didn't have any results when I was at Mayo, so I came back to New York and they called to tell me the TTT results.

The Mayo doctor characterized it as "mini pots" but ever since then I have started to feel much worse with terrible anxiety, brain fog and balance issues.

Being that this is such a great place for information I'm curious what you think of these TTT results?

Also wondering if anyone has heard of / been to see Dr. Depace in Sewell, NJ? (I noticed he's not on the doctor list)

BP (mmHg)                   Heart Rate (BPM)

Supine 138/85                   52

Tilt 1 min 123/84              73

Tilt 3 min 130/96            101

Tilt 5 min 148/90            106

Tilt 7 min 137/84            106

Tilt 10 min 139/86          109

Tilt -1 min 144/77           50

 

Thank you very much.

 

[bombsh3ll]

Hi AutoDrive2000 & welcome (although I am sorry you find yourself here).

Yes, to me your TTT results are typical of POTS. I too usually have quite a low supine HR & my uprights don't go much higher than yours, but it is the 30+bpm increase, plus the symptoms of orthostatic intolerance that are diagnostic of POTS. 

I think at the time you went to Mayo, if fatigue was your only symptom and you had no problems with syncope/presyncope/lightheadedness/chest pain/sense of non-psychogenic anxiety/tremulousness/uncomfortable tachycardia or palpitations etc etc... in the upright position, you may not have strictly met the criteria but it sounds like you do describe some of them now. 

Were you given any treatment at Mayo or any other tests to rule out other conditions or underlying causes? 

I live in the UK so have no experience of US healthcare, but what matters about choosing a specialist (if you can), is to seek someone who is familiar and experienced with treating dysautonomia patients, not just any old cardiologist UNLESS they are particularly receptive to reading up on the current research and work with you to try out various approaches. I would take someone with little or no initial knowledge but interested and willing to learn, above someone who may have heard of POTS, treated a couple of patients & thinks beta blockers are the be all & end all & won't entertain anything else - particularly with a low resting HR!

Best wishes,

B x

[AutoDrive2000]

Thanks you so much @bombsh3ll - very kind of you to take the time to give me such a thoughtful response.

To answer your question I was not given any treatment options at Mayo because I'd left already. (When they called to tell me about the TTT result they simply suggested salt tablets, extra water and compression socks).

Other tests I had at mayo were an ECG, Echo Stress, Overnight Oximetry, CT of Abdomen and CT of Chest, Some Urine and Blood Tests although not so sure they were tied to POTS)

What are the other major tests I should have done to rule out underlying causes?

Thank you so much.

 

[bombsh3ll]

Hi AutoDrive2000,

That's a bit bad they didn't offer you a face to face follow up appointment to discuss your results. Will you get a copy of the blood and urine tests you had? It is great that you've had your heart checked out & sleep apnoea excluded. Other common things to exclude that have probably been done are anaemia, thyroid problems, autoimmune screen and catecholamines. The latter is to exclude a pheochromocytoma (adrenal tumour that secretes noradrenaline & related hormones). It is commonly done as a 24 hour urine collection but can also be done as a blood test. Blood catecholamine levels are sometimes done lying and upright eg at same time as the tilt test to see how they increase with posture. 

Other things would depend on your personal and family history. If you were very flexible as a child or have had joint, skin or surgical complications, testing for a connective tissue disorder is sometimes considered. For example I have Ehler's Danlos Syndrome (weak and stretchy collagen) that can affect various body functions & is considered to be one cause of secondary POTS. I also had a lip biopsy to exclude Sjogren's which is an autoimmune disease that can cause POTS. I didn't have that. Not everyone gets tested for that especially if general autoimmune bloods are negative, but it tends to be considered in younger females with sudden onset/severe POTS especially if they have dry eyes and mouth (I do). 

I hope you manage to see a specialist soon. It seems a shame to go somewhere with the fantastic reputation of Mayo and come away with just salt water and compression socks, which anyone who can use google can find out!

Do try the compression though and get chugging, both of those things do help me albeit minimally. The most important thing I would say though is move as much as you can. Don't get deconditioned if you can help it as it makes POTS worse (although I do not believe in the slightest that deconditioning causes POTS in the vast majority of cases, as has been postulated by some.)

B x

 

[StayAtHomeMom]

I would try to see a specialist in your area. You can get the records to the specialist and that will help. A urine or plasma catacholmine test will rule out hyperPOTS. If the blood tests were an ANA and inflammation markers that is used to rule out autoimmune. Also thyroid markers in your blood tests. It looks like they ruled out heart abnormalities. If your PCP is willing they can treat you too. If they are willing to learn and you put in the research. My PCP and cardiologist were treating me before I started seeing my specialist. They still mostly treat me considering my specialist is 3 hours away. 

Out of curiosity did you like Mayo? I am considering going to Cleveland clinic or Vanderbilt to try and find my underlying cause. 

[AutoDrive2000]

Thanks @bombsh3ll !

I actually had already left mayo before the results of the TTT came in. So I was already back on the other side of the country when they called to explain that they thought I “might” have pots. 

I did in fact get an ANA which was negative. My markers for inflammation were also very low. And I don’t think I have EDS. I’m a 44 y.o. male for what it’s worth. I’m extremely intrigued by what you say in regards to catecholamine levels and Pheochromocytoma. This is all so new to me. Would my chest X-Ray have discovered Pheochromocytoma?

I have indeed found a specialist and have an appointment in one month’s time.

Hi @StayAtHomeMom

I visited the Mayo in Arizona, not the main one in Minneapolis. I mostly went for fatigue and nausea. It seems that Pots - at least as a secondary cause - helps to explain my issues. So I’m grateful they uncovered that. I would say overall that yes it was a positive experience, but like I said, I had already went back East when the TTT results came in, so I never really had a chance to engage their autonomic specialists.

Thanks again to you both. All this info is incredibly helpful.

[StayAtHomeMom]

It can be a little overwhelming at first but once you have a handle on all the information it isn't too bad. Sounds a little unusual you would get POTS at 44. And being male (odds are less). When it started had you just gotten sick or were you laid out from an body injury?

[Pistol]

I became sick with POTS at 42 but I had symptoms all of my life, just not bad enough to cause alarm. 

[StayAtHomeMom]

3 hours ago, Pistol said:

I became sick with POTS at 42 but I had symptoms all of my life, just not bad enough to cause alarm. 

Did you have a illness or injury that triggered yours at that age? Most of my research has shown it usually starts younger but it doesn't seem to be ruled out just because you are older. To me it seems more common in people in the 20s. 

[bombsh3ll]

16 hours ago, AutoDrive2000 said:

Would my chest X-Ray have discovered Pheochromocytoma?

No it wouldn't, but I would expect the mayo to have tested your catecholamines in either blood or urine, although they may not have done if POTS was only considered after you left. You need to confirm that this has been done though & get your results. If catecholamines were high, it certainly doesn't mean you would definitely have one, but an abdominal scan should be arranged to look for one. 

I got pots at 34. Prior to that I had fainted a handful of times in my life, first time age about 12 & usually with a trigger such as watching surgery during medical school, or being pregnant. I was completely well in between though. 

B x

[AutoDrive2000]

On 12/8/2018 at 9:35 AM, StayAtHomeMom said:

Did you have a illness or injury that triggered yours at that age? Most of my research has shown it usually starts younger but it doesn't seem to be ruled out just because you are older. To me it seems more common in people in the 20s. 

Not that I'm aware of. I suppose I could have caught a virus of some sort but I'm really not sure?

 

On 12/7/2018 at 8:39 PM, StayAtHomeMom said:

It can be a little overwhelming at first but once you have a handle on all the information it isn't too bad. Sounds a little unusual you would get POTS at 44. And being male (odds are less). When it started had you just gotten sick or were you laid out from an body injury?

Nope, just apparently crept in from nowhere. Very strange.

[StayAtHomeMom]

2 hours ago, AutoDrive2000 said:

Not that I'm aware of. I suppose I could have caught a virus of some sort but I'm really not sure?

 

Nope, just apparently crept in from nowhere. Very strange.

I hope you feel better soon. Maybe you will get lucky and it won't be lifelong. Any medication ideas yet?

[AutoDrive2000]

On 12/10/2018 at 1:27 AM, StayAtHomeMom said:

I hope you feel better soon. Maybe you will get lucky and it won't be lifelong. Any medication ideas yet?

Not yet. I’ve noticed benzos do help a little. Not sure what that means?

[StayAtHomeMom]

8 hours ago, AutoDrive2000 said:

Not yet. I’ve noticed benzos do help a little. Not sure what that means?

I am not sure either. I would just take the blessing that something helps. Maybe something else will present itself to help give you answers.