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Tests/ Specialists?


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Hello everybody,

I am new here. 29 years old, female.

Had symptoms of orthostatic intolerance since pretty-much as far back as I can remember (early childhood). Towards the end of last year I got some mystery virus and suddenly had a very overactive thyroid (antibodies showed up too) but that quickly reversed with the antithyroid medication - 'too quickly' according to specialists. Aside from my levels improving I became bed-bound and was having 'attacks' all the time... finally diagnosed with severe POTS and have since realised my adrenal gland was throwing a party which was linked with the 'attacks'.

I am on florinef now, things have stabilised but I'm still pretty disabled by this illness.

My worst symptoms is breathing difficulties. Feels like I'm a puffed up balloon and my muscles all around my ribs feel 'rigid'. It's like my whole chest area has turned brittle and I can't get enough air *out*. I combat this all the time by making sure I breathe out more (slowly), and try to breathe in a little. Makes things more bearable.

Anyway, I am finally going to have the echocardiogram for my heart. I don't know if they should do that when I'm standing/sitting with my legs down though? They probably won't bother.

Also, I see my new G.P on Tuesday. I keep wondering about possible underlying diagnoses. Why do I have POTS? I've looked into EDS a little bit but I am not 'bendy' at all. I did have horrible varicose veins from a very young age though - despite never being overweight or anything as a kid. Most embarrassing. Could this mean anything? I don't think I fit the criteria for EDS at all aside from that one thing.

Anyway, I was wondering about organising a lung function test because of my breathing difficulties which are the worst thing for me.

Any ideas of any particular types of specialists I should see?

One more question - recently when I was in hospital they noticed my pupils were different sizes. Is that a normal part of POTS? Could that be why I have problems with light?

Thanks for any help! Like I wrote, I have a new G.P now and she seems pretty onto it. I would like to take the opportunity to perhaps have her back-up and to be checked out properly.... I don't like being disabled like this, but always in the back of my head knowing very very few tests have been performed, and I have only seen a specialist for the thyroid issue and one specialist who got me diagnosed with POTS but then didn't know anything about how to actually *treat* it, so he sent me back to the care of my old G.P.

Take care :)

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I too have the unequal pupils, left pupil stays dilated and is slugish to react when they test it with the light for reaction. It is called adies pupil. It is very sensitive to light, and tires easily and actually causes me discomfort behind the eye. It seems the drs have not been able to do anything about it for me. Another word i found for it is Anisocoria, and is thought to be autonaumic phenomenon, occuring infrequently. More common is difficulty following a moving object with eyes, and the light sensitivity issue as well as blurred vision. While some of my other symptoms have improved slighty over the past 2 years, the eye issue has not improved much. It has been very discouraging.

Blessings to you!

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