Acro symptoms no diagnosis

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Acro symptoms no diagnosis

Postby member_42952 » Fri Nov 11, 2016 6:42 pm

Hi everyone, just wondered if any one has been diagnosed withacromegaly after initially being told it's not. I have suspected for about 5 years now that I have this disease yet bloods aren't showing it my symptoms seem to come in cycles , I feel absolutely hopeless. Now cause I've done so much research as to what else would cause the symptoms and this is it , it must be . Brief summary of symptoms in order from beginning .
Sudden fine excess hair growth everywhere
Thick skin
Mild acne which has cleared now
Really oily skin
Very alarming strange itchy circular rash covering body not face (googled this found its common in cushings)
Massive pores
Sweating odour hard to control
Palpations
Dizzy spells
Puffy lips nose whole face
Dentist picked up on tooth spacing developing
Lower jaw moving outward
Have bump across bridge of nose
Severe bone pain in face (whenever it's growing literally )
Enlargement of brow bone forehead now whole bone structures changes( when I touch my face i can feel the change not just see it
Pain cramping tingling numbness in hands and swelling can't get wedding ring on
Pain in bones in feet and heels in the morning very sore till I get moving also swelling and spreading of feet can feel heels growing into floor(I haven't gone up a shoe size yet though ?)
Joint pain started in hands now in knees feet wrists and recently my back (spine)
Leg are arm weakness , get exhausted climbing stairs,lifting arms for more than 2 mins)
Bowel and uterine problems , pain under ribs
Diarrhoea and constant mucus shooting pains up back passage
Discharge pain womb area ( assuming it's fibroids ) shooting pains that area also
Pain under ribs (was suggested by dr could be kidney stones)was supposed to get a scan never received it
Insomnia not just can't sleep wired euphoric feeling
Funny panic attack like turns ,then feel severely hungover body sore painful
Weight gain round middle and upper back .

I could go on , I know I can assure u I ain't no hypochondriac I would swear on my life this is a pituatry Tumor , had my bloods for adrenal problems cause of funny panic attack like turns and my ending muttered she thought it was pituatry but Iwas really early before I noticed said facial changes now she won't see me . Ive seen another 2 and they dismissed me on the spot cause igf-1 has been in normal range . I had low testosterone and slightly raised glucose .
I got fed up going to Drs cause I was getting sent to ents ,gynaecologists , gastroentoligists ,they were going to send me to a cardiologist and quite frankly I got sick of being thrown around when I know it's an endocrine problem and all this is related , but I'd rather get to the MAiN problem .

Had severe headaches that first came in waves then didn't got away for a whole 6weeks accompanied by spacial awareness problems vomiting (I had been vomiting on waking every miringfir2years)numbness on fight side of face and body , anyway they did a brain MRI and all it showed was enlarged sinuses (another acro symptom.
I got fed up not being heard by anyone about the main problem here ,but what else could this possibly be . No one will entertain me with out bloods

Gave up being thrown roundfrom dr to dr , it been a year now join pains now affecting my back jaws still changing , got a big dent in my cheek now cause my facial bones have grown down , got my 2front teeth (crowns )replaced was starting to show gaps in teeeth , when they were replaced there was no gaps but since my face is come down I can see gaps appearing again ! Oh and woke up one morning to a head and face that had swellled right up and went in the shower and I'll be ,when I washed my hair I could tell my whole head had changed shape !!! Lol not funny but like seriously this is horrendous.

Like seriously this must be acro ,Drs just won't listen what's going on , I've even seen the resemblance from other acro patients through every stage of this

Can anyone relate help with this non diagnosis nightmare l help help help
member_42952
 
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Re: Acro symptoms no diagnosis

Postby Pat » Mon Nov 14, 2016 12:13 pm

Hi

If it has been some time since you had a IGF-1 test, this could be useful now.
if you wish to show your GP or give him/her link to our GP Fact File -https://www.pituitary.org.uk/information/publications/health-care-professionals/pituitary-disease-factfile/

Acromegaly
Fact sheet 3, (page 9) -

Many of the actions of GH are mediated by insulin-like growth factor-1 (IGF-1), which is secreted from the liver and other organs under the regulation of GH.
GH levels fluctuate over the day. Plasma IGF-1 levels, in contrast, fluctuate little during the day and can be used, along with GH, as a measure of disease activity.
Pat
 
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Joined: Tue Sep 07, 2010 2:25 pm


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