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Has anyone here ever heard of Intermittent Acute Porphyria? If so, please read

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Old 04-11-2011, 09:35 AM   #1
Join Date: Apr 2011
Location: Cheshire, UK
Posts: 7
TigerPaw2011 HB User
Question Has anyone here ever heard of Intermittent Acute Porphyria? If so, please read

Here are symptoms I have experienced for far too long now and I can't find any answers. I'm desperate here. Diabetes test came back negative.

Anxiety Has developed over past year
Stomach pains Started several years ago. Recently has become more localised to the upper right abdomen, lower left abdomen and occasionally in the back. Some things I have noticed cause the pains include white chocolate, Nytol tablets, sometimes pasta, some crisps (Doritos mainly) and lack of sleep can also cause them. Alcohol can sometimes cause them, not always.
Depression Worsened since September. Has led to lack of interest in college, which normally I enjoy a lot.
Difficulty sleeping worsened over past year. If I do drift off to sleep early I usually wake and cant sleep again.
Chest pains Dont occur very often. Last happened late 2010
Dizziness Can come on after certain foods
Lethargy More since September
Mood swings Have been happening for a while for no apparent reason.
Leg cramps -- could be related to sleeping position, but mainly happens in the calf muscle.
Pain in knee and shoulder (Shoulder pain comes on very suddenly and lasts for a split second). Also sometimes have pains in the arm, mainly the wrist but could be due to old injury.
Heart palpitations
Not as focussed as usual.
Confusion I had to spend a few minutes remembering which way to walk even though I know the area well, and I forget where things are at college although Ive studied there for 4 years.
Not sure if its related, but sometimes when walking I am aware Im not walking straight. Sometimes I lose balance as well when standing still.
High BG reading: 14.9 1 hr after sugary drink. Might be normal though???
Researched acute intermittent poryphyria and it makes sense.
What makes symptoms worse:
Mainly sugar
Sometimes crisps
Nytol sleep tablets
Sometimes pasta

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Old 04-17-2011, 11:02 AM   #2
Join Date: Apr 2011
Location: Toronto, Canada
Posts: 6
Nyxks HB User
Re: Has anyone here ever heard of Intermittent Acute Porphyria? If so, please read

What is it you need to know about AIP? both my mom and I have it

There are tests that can say if you have Porphyria but the simple test to see if you do is if you are having an attack, you pee into a clear clean cup and put it in the sunlight if it turns purple your in the middle of a porph attack.

There are also DNA testing that can be dun, but without the other tests which can easly come back negative its hard to get a doc to preform the DNA test.

As to your glucose control mmol 14 after a GTT is diabetic range, though some endos put that to be Insulin Resistance and not type 2 diabetes right off the bat, and you should be getting treatment for it, if you where normal after at GTT test you wouldn't have spiked to 14.

Also porph is the great mimiker it can look like other conditions, have you been checked for Polycystic Ovarian Syndrome, or Cushings? since some of the same signs and symptons can be signs of other conditions, not only proph. Because of the triggers you listed I'd be more inclided towards PCOS then porph.

< edited >

Last edited by Nyxks; 04-17-2011 at 08:43 PM. Reason: updated to remove ref site points

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Old 04-01-2012, 07:06 AM   #3
w1ldch1ld2's Avatar
Join Date: Oct 2009
Location: usa
Posts: 3
w1ldch1ld2 HB User
Smile Re: Has anyone here ever heard of Intermittent Acute Porphyria? If so, please read

I know someone with AIP and sugar/glucose is one of the things that they use to stop an attack . I would suggest going to a Hepetologist/ Endocrinologist. They would be the doctor to see to diagnose porphyria and by a simple 24hr urine test but it needs to be done when you are symptomatic and if its not porphyria they can do other tests to find out what it is... Good Luck my friend

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