Anyone else like me? Weight gain, sick, confused
Posted , 17 users are following.
Hello!
I’m 25 and have just been diagnosed with haemochromatosis (getting used to spelling that word).
My doctor says I’m too young to have symptoms, but I also have diverticulities which usually only older people get – so it’s possible!
I was always a skinny kid and then gained and lost weight as per most teens.
Just before I went travelling I was a normal, fit 5”7 170lb (77kg) girl. (I’m pretty “curvy” but muscly from years of rowing, gym etc) and always healthy.
I rapidly gained weight over the 3 years while travelling and put it down to bad diet. But was shocked to see I had gained 44lbs (20kg).
I went on a mission to lose it and for the last 5 months I’ve been eating mainly paleo. I cut out alcohol, processed sugar, grains and dairy. But….I haven’t lost any weight. Maybe just 4Lbs (in 5 months!).
I have a sore stomach, get easily bloated, get acid reflux, constipation, IBS, tired all the time, anxious, slight depression, my skin breaks out, headaches, sweating and achy.
This is not normal for someone who eats so “clean” right?
Is haemochromatosis linked to this at all? Or is my liver playing up (maybe partly due to the iron overload/ past two years of drinking and eating crap?)
I’ve had bloods done, everything came back normal except for the below:
Iron:
Serum Iron umol/L = 45 (ref range is 10 – 30)
Ferritin ug/L = 208 (ref range is 20 – 170)
Lipid Tests:
Cholesterol non-fasting = 5.7 (ref range is <5.0) ldl="" cholesterol="3.6" (ref="" range="" is=""><3.4)
liver function:
alk phosphatase u/l = 130 (ref range is 40 – 100)
haemochrometosis:
homozygous for hfe c2b2y mutilation
i’m having more bloods (a fasting one for cholesterol etc) done tomorrow.
anyone else like me?
am i crazy?
could i be getting these symptoms early?
is weight gain / inability to lose it even a thing with haemochrometosis?
thanks 
liver="" function:="" alk="" phosphatase="" u/l="130" (ref="" range="" is="" 40="" –="" 100)="" haemochrometosis:="" homozygous="" for="" hfe="" c2b2y="" mutilation="" i’m="" having="" more="" bloods="" (a="" fasting="" one="" for="" cholesterol="" etc)="" done="" tomorrow.="" anyone="" else="" like="" me?="" am="" i="" crazy?="" could="" i="" be="" getting="" these="" symptoms="" early? ="" is="" weight="" gain="" inability="" to="" lose="" it="" even="" a="" thing="" with="" haemochrometosis?="" thanks="">
liver function:
alk phosphatase u/l = 130 (ref range is 40 – 100)
haemochrometosis:
homozygous for hfe c2b2y mutilation
i’m having more bloods (a fasting one for cholesterol etc) done tomorrow.
anyone else like me?
am i crazy?
could i be getting these symptoms early?
is weight gain / inability to lose it even a thing with haemochrometosis?
thanks >
2 likes, 18 replies
paul12379 courtneylou
Edited
Juvenile hemochromatosis? not an expert just though I'd make sure y'all realize it exists
JohnnieNicole courtneylou
Posted
I know this is an old post and no longer need this information but I will throw it out there anyway.
I was diagnosed with Hemochromatosis in May 2020 (1204 Ferritin then 105 now, Homozygous C282Y). Along with a bunch of other complications. The excess iron storage gave me cirrhosis & the cirrhosis caused hyponatremia (low sodium) and was immediately admitted to the the hospital.
The symptoms of low sodium are -
Abdominal pain or cramping
Bloating
Body aches
Changes in mood, personality or behavior
Difficulty with memory, thinking, talking, comprehension, reading or writing
Dizziness
Headache
Impaired balance and coordination
Malaise or lethargy
Muscle spasms
Nausea with or without vomiting
So be aware of that.. Do not take it lightly as it can lead to a coma or even death.
The liver damage also caused abdominal fluid build up (10lbs of weight gained almost over night) was diagnosed as ascites. They had to perfom a paracentesis to remove the free floating fluid.
My joints are suffering majorly due to arthritis from the iron damage. The damage done is irreversible unfortunately.
Laura_E courtneylou
Posted
Hi there,
Ive just got diagnosed with Hemochromatosis & am awaiting an appt with a specialist.
my symptoms are not having periods for 5 months, then having a very light period on 6 month and none on 7 month.
I've been very tired & put on weight - 2 stone since lockdown of March 2020! from 14st to 16st! It has got me down however been back to swimming since April 30 min 3-5 x per week. sometimes I have hot flushes, lack of sex drive. definitely feel a change.
Because of being 36 Im worried if its affected me Gynalogically. An internal scan is showing good result. I have been ruled out of menopause, cancer, thyroud, diabetes. But do have high Ferratin at 2.25.
it is nice to read similar stories & gauge different symptoms.
Thanks
Laura