Is it pots or could it be something else?

[Kenjie]

I have hypothyroidism and even though the bloods always return 'normal' could I be having thryroid issues rather than pots or combination of both?

Or even early menopause at age 35?

All the symptoms of each are very similar ...it frustrates me that I'm put on beta blocker metroprolol yet new doctor cannot tell me what's wrong with my body... He doesn't seem to think there is a cause...

How many times do I need to change doctor to finally get the answers I need!?

Thoughts?

 

[purrsian]

To my understanding, it's POTS as along as it causes the increase in heart rate upon standing (forget the amounts, I think increase in 30 or to above 120bpm?). So your symptoms may be caused by thyroid issues, but I would still think that they are POTS. I haven't tried any meds yet as I'm super sensitive to any drugs, but there are many lifestyle changes to try first. Have you tried any, or did your doctor put you straight on the beta blockers? Let us know if you don't know much about possible lifestyle changes, as there are many threads and links with lots of help.

Have you had any other menopause-like symptoms to fit that theory? I would assume that the normal thyroid results (because you're on correct thyroid meds dose?) would indicate that your hypothyroidism is under control and thus not causing the POTS. Are your normal results include TSH, T3 and T4? It can be hard to know definitively, but your normal results mean your body should have enough circulating hormones to function normally (for the most part!).

Also do you have any other autonomic symptoms that started around when the POTS type symptoms started? For example, I started getting an exaggerated startle response (overwhelming shock from a small surprise, had to rest for a bit after each time), thermoregulation issues, sweating at inappropriate times and all over (not focused at normal areas like armpits), palpitations, night sweats, GI issues.

I think it can be really hard to work out what is the cause and what is the result when dealing with the many syndromes and symptoms we all seem to suffer from. I think your best bet will be to do what you can to address each issue - I list my strategies for each issue separately, then go through my lists and ensure that all strategies work ok with each other (ie. you don't want to try a POTS treatment if it might mess up your thyroid). In my experience, doctors VERY easily miss contraindications for complicated patients. Having lists of my strategies helps remind me to stick with them too, otherwise there's too much to remember!

 

[taniaaust1]

I have hypothyroidism and even though the bloods always return 'normal' could I be having thryroid issues rather than pots or combination of both?

You either got POTS or u havent got POTS, the only way to know is via testing. POTS often is secondary to many other health conditions. (I dont know if hypothyroidism causes POTS or not so that's something you'll need to look up).

I suggest not to speculate and get tested or poor mans test yourself to see it is probably POTS.

 

[Kenjie]

You either got POTS or u havent got POTS, the only way to know is via testing. POTS often is secondary to many other health conditions. (I dont know if hypothyroidism causes POTS or not so that's something you'll need to look up)

I think I could be autonomic dysfunction but 5 mths of chasing doctors still no answers

 

[taniaaust1]

I think I could be autonomic dysfunction but 5 mths of chasing doctors still no answers

That's why u need to focus on getting to the "right" doctors and not be randomly going to them or you'll be wasting your time and energy..

umm I see u are in NZ so that may not be easy to find. Dr Roselind? Vallings there is very nice when I spoke to her on phone in th past but I didnt like many things in her book and felt like this whole ME/CFS thing was played down in her book a bit (I dont know what's she'd be like as far as POTS go).

Anyway she's the NZ ME/CFS specialist, you could try to contact her and ask her if she knows where you could go to get POTS testing done.

Have u guys in NZ got a ME/CFS support group u could ring to find out which drs there specialist in POTS? So to know who u could go and see about it. I get a lot of my advice on drs to go and see from my states ME/CFS support group.

 

[Kenjie]

That's why u need to focus on getting to the "right" doctors and not be randomly going to them or you'll be wasting your time and energy..

umm I see u are in NZ so that may not be easy to find. Dr Roselind? Vallings there is very nice when I spoke to her on phone in th past but I didnt like many things in her book and felt like this whole ME/CFS thing was played down in her book a bit (I dont know what's she'd be like as far as POTS go).

Anyway she's the NZ ME/CFS specialist, you could try to contact her and ask her if she knows where you could go to get POTS testing done.

Have u guys in NZ got a ME/CFS support group u could ring to find out which drs there specialist in POTS? So to know who u could go and see about it. I get a lot of my advice on drs to go and see from my states ME/CFS support group.

In my Google searching I only found 3 others specialized in pots.. They're in Christchurch in south island. I'm in the north island.

Limited resources here in nz in my findings in regards to pots/autonomic dysfunction etc.

 

[Sushi]

If you have POTS, it should show up on a Poor Man's Tilt Table test which you can do at home. Click on search, then site-search and you will find threads giving exact directions.

 

[Kenjie]

If you have POTS, it should show up on a Poor Man's Tilt Table test which you can do at home. Click on search, then site-search and you will find threads giving exact directions.

Definitely willing to try this. Have ordered a finger pulse monitor so waiting for that to come then I can try.

Will being on metroprolol stop me from picking up on pots it if was pots?

 

[Sushi]

Definitely willing to try this. Have ordered a finger pulse monitor so waiting for that to come then I can try.

You would need a blood pressure machine as well as it could be another form of dysautonomia that involves the blood presssure.

Will being on metroprolol stop me from picking up on pots it if was pots?

Quite likely that it would.

 

[Kenjie]

You would need a blood pressure machine as well as it could be another form of dysautonomia that involves the blood presssure.
Quite likely that it would.

Not sure how I'd rectify that. If I stop taking it I might get worse again. I know before better blocker...I had faster heart rate altho standing as well as sitting.. Heart had mind of its own. Now its just slow.

 

[Sushi]

Now its just slow.

How slow is "slow?" Mine is about 45 and my cardiologist is okay with that as it is being suppressed by needed drugs.

 

[Kenjie]

How slow is "slow?" Mine is about 45 and my cardiologist is okay with that as it is being suppressed by needed drugs.

Lowest so far that I know of was 52

 

[Sushi]

Not sure how I'd rectify that. If I stop taking it I might get worse again. I know before better blocker...I had faster heart rate altho standing as well as sitting.. Heart had mind of its own. Now its just slow.

As far as I know, any hospital or clinic that does initial autonomic testing would ask that you stop your drugs--otherwise they can't get the true picture.

 

[taniaaust1]

In my Google searching I only found 3 others specialized in pots.. They're in Christchurch in south island. I'm in the north island.

Limited resources here in nz in my findings in regards to pots/autonomic dysfunction etc.

Ring the POTS specialists in South Island and ask them who in North Island you could go to for this testing. They'll probably know where you should be refered to for testing.
...

As Sushi said you need a proper BP monitor for home testing. As POTS can be rather hard to treat it 'may" still show up on a home test even though u are taking a medicine which could stop it showing but if you can stop the medicine andd make sure its out of your system before doing a home POTS test it would be better.

My heart beat has been recorded at 51 when Im laying (I think I was asleep at time). POTS testing still shows up my POTS though.

 

[Kenjie]

L

Ring the POTS specialists in South Island and ask them who in North Island you could go to for this testing. They'll probably know where you should be refered to for testing.
...

As Sushi said you need a proper BP monitor for home testing. As POTS can be rather hard to treat it 'may" still show up on a home test even though u are taking a medicine which could stop it showing but if you can stop the medicine andd make sure its out of your system before doing a home POTS test it would be better.

My heart beat has been recorded at 51 when Im laying (I think I was asleep at time). POTS testing still shows up my POTS though.

Last night before I slept my heart rate was 39bpm!

Then I woke 3 times with a racy heart.. but like anew adrenalin rush.. this has happened few times over last few months but not 3 times in a night. Do you experience this?

I'm contemplating going straight back into doctor. I did talk to one of those specialists in Christchurch who said it's a cardiologist I need to see.