Anyone else like me? Weight gain, sick, confused

Allergies, blood and immune system
1

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 smile

2

Thank you for your submission,I screenshot your results as a blueprint cause I think I have similar issues.do you also feel as if your under the influence of something nonstop?

3

Hi Courtney.  You will probably be having all these side effects as it is linked to haemochrometosis, IBS,Constipation,Depression,Headaches,and feeling tired all the time.

Because you always feel tired, your not doing as much, hence the weight Gain. I went thru a strict diet at the start, but found it didn't really help a great deal. Stomach pain and discomfort can be a common thing,despite a healthly diet..

I've not had the Seating,Skin break out,but there's so many side effects,that each person gets a different selection.

Every day my legs ache,and both of hands have swollen joints in the knuckles, which can hurt at times.

Past days of eating Crap food,and drinking wont have made any difference.

Just make sure your Ferritin level is kept to a low basis,and live your life as you feel happy with. (try and keep high iron foods out tho,i.e. Liver,Cerals,Spinage, and Guninnes.! ) Some of the main ones i was told about.!

Am very surprised you have got this at your age tho.

4

This condition in generally hereditary. Do either of your parents have it? I have genes from both parents and I do experience a lot of the symptoms you have, but when they discovered it, my ferritin was 1475, it is now 400 after 6 months of phelobotomies.

5

Hi Courtneylou, I commend you for eating Paleo style.  We with HH seem to not be able to digest sugars, and starchy carbs very well and it tends to form fatty liver.  Starchy carbs include any grains (breads, cakes, biscuits, pasta, rice, potatoes, root vegetables).  Sugars mean all sugars - including fruit.  Reduce those as well.  A piece of fruit in the morning can be worked off during the day.  As well, grains and dairy can cause inflammatory problems with some people, and those with HH need to eliminate all inflammatory causes.

As potatoes and bread was so habitual in my diet, I started eliminating with the evening meal and worked back to breakfast, when I finally eliminated my beloved porridge.  I now have a protein breakfast - egg, turkey or cheese, advocado, tomato but found that I need some toast to go with fried egg.  So I found Burgen Soy and Linseed the best, or the most seediest," sweepings off the floor" type bread that you can find.

HH does not cause weight gain - we tend to be on the slim side - unless we have got fatty liver and then it is generally only our middles which are fat.  You may be still trying to get rid of the fatty liver caused by your earlier excesses.  Your cholesterol is high for someone with HH, but you are working on that. So just keep going.

You are so luck to have been diagnosed early.  Venesections will stop you getting any worse problems.  How often are you currently being venesected?  What is your transferrin saturation %?

I am sure your doc has tested your thyroid, if not, thyroid problems can cause weight which is hard to shift.  Also ask for your pituitary gland hormones (all of them) to be tested - just to eliminate any problems there.  Do you think you might have PCOS?  Check that out also.

Also ask to be tested for Helicobactor pylori - we are prone to that.  It thrives on iron.

Check your library for Iron Disorders Institute books - Guide to Hemochromatosis, and The Hemochromatosis Cookbook.  Not necessarily for their recipes but for the information regarding food and HH and you will find it is ok to eat spinach - except by the bucketful each day.

You will also find that drinking tea with your meals, calcium products or a small glass of red wine, all of which help reduce the uptake of iron.  I drink soy milk and naturally set yoghurt.  Look for some Kefir "seeds" in your health store and make some up to have first thing in morning.  This will help with your stomach problems, but have your HP test first as it will interfere with the results.  I did use organic full cream milk, but I have since heard of others using soy or coconut milk.  Apple cider vinegar is also good before meals.

Keep in touch.

6

Hey thanks for your reply – I appreciate that! I was waiting to reply until I got my other bloods back.

Got tested for PCOS via blood and my hormones are fine, though a bit low on the progesterone but I’m going to get a more accurate blood test done on day 21 of my period.

I’ve been booked in to get a scan to check my ovaries to test further for PCOS so will see how that goes.

Breakfast is usually coconut milk, banana, blueberry and LSA smoothie. 

Lunch is either salmon and a salad or some kind of vege scramble (at the moment it’s red cabbage sautéed in apple cider vinegar on top of a roasted sweet potato – so yum)

Dinner is same as lunch or if I’m lazy, hummus and carrots!

Have cut coffee, all processed sugars, alcohol and I drink 3L of water a day.

Boring, but tasty and ‘safe’. Can’t see how after 3 months of this I can not lose weight!

I can’t eat seeds and nuts unfortunately due to diverticulitis (unless they are REALLY ground up). So I just avoid all bread / grains etc.

Haven’t been venesected yet – I’m booked in to the Haemochromatology unit but theres a 3-5month wait list. They will do more tests then and determine how often I need to get venesections.

My transferrin Sat is 0.85 (non-fasting) and 0.47 (fasting)  (ref range: 0.15 – 0.50)

Have tested my thyroid (all of them) and those results came back fine.

Have also been doing the ol’ apple cider vinegar and I have avoided all soy and milk products – they tend to cause IBS.

Lastly, some of my symptoms are linked to allergies (sneezing, sore throat) and acid reflux. 

Dr wanted to put me on antihistamines but convinced her to allow me to do an allergy test first! So will do that and see what happens.

Also, I am not on the contraceptive pill – so may consider that down the track to balance hormones – which is (hopefully) fix my skin issues and weight!

So frustrating to be going through all of this at only 25. It has totally knocked my confidence. 

I went from being a slim, healthy looking girl to a sick looking fatty in less then 3 years. 

These are supposed to be my prime years too!

Anyway thank you so much for your reply – it was really helpful!!! 

7

Yes! Really woozy and a bit like i'm high sometimes. I kinda describe it as brain fog - weird right?

8

Yes I have all of those symptoms! 

I do exercise a bit, not as much as I used to – but I figured if I was really strict on my diet, then it could help with weight loss. But maybe I need to increase my exercises. Very hard to do with a sore stomach though.

Apparently the sweating and bad skin is due to hormones – so am looking to go on the pill to balance that out.

I do have achy, swollen hands – I thought it was because I cracked my knuckles (bad, I know!).

Thanks for your reply – weird I’ve got this at this age too, but glad I found out now smile

 

9

Tey are getting tested this week along with my brother and sister! If they have it, they didn't know! 

10

You certainly are eating healthy and should not be having weight problems, so there is definitely something else going on.  I found I had to have some protein with each meal, and if and when I need a snack, I look for protein.  I had to cut out the sweet potato as it was still high in carbs even though it is low GI.  I give my husband sweet potato as he works it off.

I have allergies with my Helicobactor Pylori too.  It keeps returning every now and then despite having special antibiotics to kill it off.  In the first instance I ended up with 6 duodenal ulcers because they did not know about HP back then.

Then my husband, who also has HH, started having allergy problems and a persistent cough and 'silent' acid reflux, ie he did not feel it but the endoscope saw signs of it in his throat.  He was found to have HP via a biopsy.  Otherwise, the test is usually a breath test but it can give unclear results.

With diverticulosis, do you need more fibre, or is fibre a problem for you?  I eat lots of different greens all at once (like a cooked salad), plus cauli, red onion, leek, fennel, etc.  Is broccoli a problem for you - all the little buds?  To replace my once loved pasta, I found an alternative called pasta and rice made from Konjac root, no carbs, no protein, no gluten, no calories, but high in fibre.

In my country Slendier has bought the company - used to be called Slim Pasta.  It comes in a two-serve pack, rinse it (it does have a funny smell but don't worry about that, it rinses out), then heat up some water and pop it in for a minute.  Then serve.  Only eat one serve at a time or you will burst!  Keep the remaining serve in the water in the fridge.  I often just mix some pasta up with the daily veges, or with the usual spag sauces.

Gee, I must try the cabbage sauteed in apple cider vinegar!!

When I was having major skin problems, I was put on Androcur but it was only after I was not going to fall pregnant.  It really worked, also a script for a retin-a cream (not gel).  The one sold in my country is called "Retrieve" with Tretinoin 0.05%.  Excellent stuff.  I also stopped using cosmetic cleansers, and now wash with Cetaphil wash, exfoliate with bicarb soda, and finish with a wet washer with a sprinkle of white vinegar on it to replace the acid mantle which helps prevent bacteria.

Androcur is also prescribed to women with PCOS.

Let me know how you go.

 

11

I have your same symptoms! I got them at about 26. I was 108 pounds and them boom overnight gained ten pounds. Over the past five years I've managed to get the weight off for a few weeks or so only to gain it back, and what I did to lose it didn't work anymore! Acne(pretty sever body-wide), hair loss, cognitive dificulties, persistent depression, ulcerative colitis, anemia, no energy, and eating a low carb diet. Bloody stools, burning pain in my belly. I'm always sick. I hope you find an answer and it would help me as well! 

12

I just ran a blood test yesterday and it showed my ferritin was at 1337. After your phlebotomies did you have to continually maintain your iron levels? Did it ever go back up? Because of your high iron levels did create other conditions in your body like diabetes or liver damage?

My results shows that it has for me. I'm waiting to get advice from my doctor whether if phlebotomy will reverse the damage that's been done.

13

Any updates? I'd be curious to know how you're doing a year later. My daughter is two weeks away from turning 18 and was just diagnosed with haemochromatosis -- iron tests (100% saturation) and two copies of the C282Y mutation. She had a birth control implant inserted in her arm 18 months ago to control her terrible periods. She stopped menstruating, but soon started having other symptoms - abdominal pain, diarrhea, joint pain, headaches, sweating. She went from being very athletic - also a rower as well as a mountain bike racer - to barely able to get out of bed. She has gained about 20+ pounds in 5 months (she doesn't want to weigh herself). Her thyroid tests have come back normal, I'm just wondering why she's gaining weight. Maybe just from being sedentary.

14

Hi- I'm also wondering if you have any health updates? I was newly diagnosed with hemochromatosis and have very similar symptoms.

Thank you

15

Hi- wondering if you have any updates on your daughter? I was recently diagnosed with a Hemochromatosis with very similar symptoms.

Thanks!

16

Juvenile hemochromatosis? not an expert just though I'd make sure y'all realize it exists

17

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.

18

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

19

I was recently diagnosed after 12 years of struggling. It started when I was 19. I started getting facial hair and felt dreadful. I compared it to feeling 80 years old. I kept going to Doctors to get tested because I knew something was wrong.. nothing showed.. I was completely "healthy". Then at 25, I gained massive weight while being healthy and active. My cortisol went through the roof and was the culprit. Over the years I haven't been able to get it off. My health kept getting slowly worse and I felt crazy!! Wondering why nothing I did was working and having Physicians look at me like I was lying about my lifestyle because all my labs said otherwise. I am a nurse and it is falsely thought we are thin. Remember that this is a metabolic disease. Therefore, the iron deposits into our cells of various organs causing dysfunction in many ways. Classically, metabolic syndrome.