Fatigued all the Time but Iron Levels Now Normal

Megan, such a good question. One that I have been asking for years to no avail. Now, if anything I have put my problems down to not being diagnosed for 9 years after a hysterectomy at 38 despite severe symptoms. I was so fatigued, I was slurring and staggering that I am sure my work colleagues thought I was having a 'sip' during the day. My body ached so bad, and not until one of hips broke up one day while out shopping was I really diagnosed. My blood was so thick with iron it blocked the finer capillaries that fed the bone. Ended up having both hips replaced. I had constant chest pains for 12 months before diagnosis which eventually dissipated with venesections.

I would fall into bed and despite having a reasonable sleep, despite the pain in my hips, legs, back, shoulders, etc. I would struggle to wake up and feel like a truck had hit me. I just kept forcing myself to keep going as supposedly I had nothing wrong with me! Just getting dressed was an ordeal and I would be crying and messing up my makeup.

My hematologist at the time took my ferritin iron right down to 13 to get it out of my organs. He was an old fellow on loan to the hospital. I wish I knew then what I knew then so I could have asked more questions. I did ask though, why was I still so tired even though I am supposedly "deironed". He told me the damage was already done at a deep molecular level and that does not go away.

But now with you saying the same thing, I am questioning again, because of your youth and that fact that surely you did not have time to absorb too much iron before you were diagnosed. Was it because you had a close relative with it, or was it discovered because you were having horrible symptoms already?

My current hematologist (oncologist) keeps telling me that as I am deironed I should not have any problems. I am now going on 63 and still having new problems as a result of Haemo. I have become more and more resentful of the late diagnosis, and have set up a Support Group for other people with Haemochromatosis or think they may have it. I am able to direct them to drs who are conscious of Haemo and know how to treat it properly - by referring them to a haemotologist, instead of trying to treat people themselves - drs are not aggressive enough. I give the patients the questions to ask to get the right answers.

So, I would query how far down were you deironed to? What level are you now? Have you found your optimal level? Mine is 34. When I was 80 (found out retrospectively) I was found to have hugely rapid heart beats of 21,000 extra h/beats in 24 hours. I was tired and achey, with chest pains but had no idea of the arrythmia, because when I have had the chest pains checked out before, it lead to nothing.

The last 7 months after removal of a lesion on my leg, lots of inflammation, I knew I my fe would be high. Had a venesection in Sept, and immediately knew I needed another but had to wait another 3 months. As I have now learnt to recognise arrythmia (a cardiologist said most people do not feel real arrythmia) I knew I was still having that. My fe was 79 at time of that venesection, in line with what I previously knew. Finally another 3 months (Dec) was up and I got my gp to request Iron Studies out of curiosity just prior to the venesection. I was horrified to find that my fe was only 56 and I was getting those overload symptoms. Each 450-500 mls (1 pint) removes 24-25 mcgs of fe so that brought me down to about 32. Two days after that venesection, the problems went. Once again proving that 34 is my optimal level.

You have to find YOUR optimal level, not the dr's optimal level.

Maybe your anxiety is actually arrythmia. You can check this by buying a heart monitor strap that you wear around your chest at bra strap level and it translates it to a special wrist watch. Or sometimes you notice your heart banging away when lying prone in bed, esp on your side, you can feel it.

How are your hormones, as in oestrogen? Haemo robs us of oestrogen and can cause early menopause and infertility. Deficient oestrogen also causes arrythmia, feelings of anxiety, depression, incontinence and other symptoms which I will not go into here. I am sure you will know (or look up).

Also, a very valuable test to have is for ALL your pituitary gland hormones, as Haemo damages your pit gland, and causes all sorts of problems which may not be connected.

Diabetes tested? I hope you have had Liver Function Tests. Haemo also damages adrenal glands - causing anxiety problems too.

If your B12 is low, ask for injections. They work better - a lot of people do not absorb it in the tablet form, esp if you are blood Type A (as experienced by my husband who is homozygous D63D and ended up having Hodgkins Lymphoma). After years of depression, fatigue, muscle weakness, anti social-ness, his dr finally thought of B12. After 2 weekly injections, my husband came home humming and talked to the neighbour who he had ignored for years. (Vit B12 deficiency does cause neurological problems.) Vitamin D works best in drop form. Mine was low even though i was double supplementing in tablet form. Finally my dr, who tested me, told me to take 4 drops of Bio-Ceutical D3 Forte per day. My Vit D levels increased immediately (via blood tests).

I am prone to cancers now too, and have an MRI every 3 months after having a very dangerous tumour which has a high morbidity rate if it returns. Half my thyroid has been removed because it went ferral and ended up with multi-nodules, even though my blood tests were normal. But for years, I felt like my thyroid was NOT normal, and they kept telling me it was ok.

Then I come across some Haemos who have no problems at all - no fatigue, weakness, aches! Gee, I hate them! :-) Unfortunately it feeds the myths that having Haemo is no problem at all and it is hard to be taken seriously. My siblings are carriers and have no problems at all, and do not acknowledge or give consideration to what I am going through. I took the bullet for them.

It is the resentment of late diagnosis, and all of the above that gives me motivation to keep going and try to help others I guess. I can see you are trying to spread awareness of Haemo (or Hereditary Haemochromatosis (HH)) too. Maybe you can start a support group too - advertise in your free paper if you can, put up flyers all over the place, etc.

Please let me know how you go even if you want to do it privately, because of some symptoms you do not want to put in this discussion. We can all learn from each other and I am still learning.

Sorry, I seem to write a "book" everytime. There is so much to talk about!

Megan, I forgot to add that other signs of arrythmia I have noticed is a pinching feeling mid chest, a 'ping' in the chest (sounds funny, but that could be when your heart skips a beat), and a queasy feeling, which makes it feel like anxiety. Not necessarily all at once.

This is when I put on the heart monitor which confirms my feelings.

Any sound familiar?

Hey Sheryl,

Thanks so much for responding to this so fast.

To be honest the main symptom that I feel is fatigued - but then you know fatigue leads to all sorts of secondary symptoms (my whole body feels somewhat tired (not tired enough to miss work. I'm generally alright when I'm there even without coffee. I just mainly feel drowsy), sometimes I feel a bit of cloudiness in my head, and sometimes I almost feel like maybe I'm about to get the flu, as my muscles are a bit achy. I find that it's worse on the weekends when I get more sleep. Sometimes I'll have days where I just feel like I haven't completely woken up.

I'm having my next physical within the next month or two (I'm thinking I'll book it sooner rather than later) and I'm going to pretty much ask my doctor to test my for everything, including my iron levels. I saw her only about a week ago for shin splint reasons (I exercise a lot - about times a week for about an hour each time. I generally feel more awake afterwards but I know that's because when you exercise you get endorphins pumping).

I find that once every few months I have to take a day off of work because my fatigue will just get to me and then I won't feel very well. It's actually something that makes me so frustrated and sometimes when I think about it I just want to cry. I am so fed up of being so damn tired, I just want it to stop.

I haven't noticed any other symptoms and my liver was never tested due to my age when I was diagnosed. Funnily enough I used to be anemic when I was younger and apparently my body is just so amazing that it's just too good at hoarding iron for me now. I haven't noticed anything in relation to arrhythmia or anything like that. I do have asthma though and for most of 2013 I had really bad allergies so I'm not sure if maybe that's contributing to my constant fatigue. I have experienced I guess a sort of pinching, but asthmatics are prone to like, a tiny sharp pain in the left lung on occasion, so I've always attributed it to that when I've gotten it (which isn't too often).

I do feel though that it's gotten worse (my fatigue) over the past year. Or maybe I just never noticed it before and now I am noticing it. I have no idea, to be honest. You just get so used to be tired it can become hard to keep track of it.

But anyways. I'll try and remember to ask what my iron levels are the next time I see my doctor, and maybe I'll ask for a copy of all of the results so that I can post them here for everyone to see.

Hi Megan, that will be a good idea to post your blood levels. It helps to see what is happening to others, even though we are all so different. I know what you mean about cloudiness, gradually my brain became more and more foggy. From an exceptional memory, steely focus to what I was doing, solving problems off the top of my head (a very high IQ), I could not concentrate very much, nor remember numbers, names like I use to, and had to reread paragraphs over and over again to get what I was reading or studying to sink in. My eyes were going through the motions, but my brain had stopped absorbing the info long ago.

While you were anemic, were you given iron supplements? Toxic stuff. My dr actually recommended my taking iron when I was complaining of feel so tired. Reluctantly, I took them but they just made me feel worse - of course they would!

Cheers

Let us know how you go with your physical. By the way, are you Irish. The stats I have read from here in Australia, one in 80 have Haemochromatosis. Mostly one in 200 everywhere else.

Well I was originally anemic as a child so I took vitamins for kids which included iron in them. But I don't remember taking them past the age of about 10, so no, I wasn't taking any supplements.

And technically I am part Irish, a very small amount, but I'm actually Canadian. So yes, here in Canada it's about one in every 200 people. Hardly anyone here even knows what Haemochromatosis is. I think I sound like a crazy person to most people because inevitably at some point when I meet someone new I'm like, "HAVE YOU CHECKED YOUR IRON?!" Lol

And I'll try my best to remember to ask my doctor for all of my results. You're right, I think it's a good idea for all of us to not be shy and post our levels and compare results. More people need to become more knowledgeable about this disease so that we can lessen the problems that come with it.

I was asking about the iron tablets because I was thinking it might have exacerbated your iron loading as you are having strong symptoms for such a young age.

I believe a lot of Scots went to Canada, as well as the French - east coast anyway. I have heard the Canadian Gov assists the Haemochromatosis organisation a lot to create awareness. Are drs conscious of it or in denial? Do they do Iron Studies as a standard test yet?

When I come across Canadians I ask about their awareness of Haemo and the answer is generally no - same with Irish and Scottish visitors and immigrants. I think "What!"

While personally on blogs a lot of people from the US discuss their Haemo, I never hear about it on health talk shows, or celebrities announcing it. They talk about their diabetes, liver damage, heart problems, arthritis - but never Haemochromatosis. The US citizens who have blogged about it say that their health insurance would drop them if it was found out they had haemo so they have to go to private pathologists to have venesections, and pay heaps. Hopefully, "Obamacare" will solve this for them.

I have even emailed "Dr Oz" and "The Doctors" to ask them to feature Haemochromatosis.

I would like to look at your first blood results, your lowest, and your current levels. What haemo genes do you have? Eg. Homozygous C282Y, or D63H, or compound of both?

Really the only relief from everyday fatigue I have is when I had to stop work. I could stop trying to be superwoman. Sometimes, I have to head to bed at 7.30pm or mostly now at 8.30pm. An outing during the day stuffs me for the rest of the day. Not really my age - I have friends of same age who are capable of a lot more than I am, but they do not have haemo. I know this is not good news for you.

Asthma would not help you retain energy I expect. Make sure you are not being depleted of oestrogen. Be assertive with medical practitioners to find a possible underlying cause. While it sounds like my iron heads straight to my heart, there is no treatment for it other than venesections to get it out.

Another symptom I sometimes have, is just going about my usual activities, I suddenly feel like I have been hit by a truck (again), wading through quicksand, and yawning, yawning, yawning. We generally yawn like that to get oxygen into our brain, and I think once again, that it is a heart thing.

I had to be really assertive to get to see a high level cardiologist because any heart tests did not show anything (except one time I was having an ECG, I felt a 'ping' and technician nearly fell off his chair and asked if I felt that, as my heart had skipped a beat - so that is how I know what the 'ping' is now). I had to take research about how Haemo affects the heart to him to read and one of the wisest words I have heard about this came from him - that the only treatment for iron deposits in the heart was venesections. They are able to look for iron deposits in heart now with a special MRI that works even though you heart is moving, but our Medicare does not cover it, nor does my private insurance.

Have you looked at the Iron Studies Institute website. http://www.irondisorders.org/Websites/idi/files/Content/854256/HHC%20ALL2011.pdf page 2 of the doc is so informative. It gives a table of the normal levels, and a list of all the organs that are affected.

Bye for now

Sheryl

megan, I have responded but because I included a reference to another website, my response is being held up for approval. I did the same to steveyraff and actually linked in the url and got this problem so I tried the not so direct approach. It has been at least 36 hrs since I responded to him, and no approval.

I don't know how to get back the reply in order to tweak it.

Hello, i had chronic fatigue for years..and kidney infections...It was due to the mercury amalgum fillings

in my teeth...Once they were removed, I improved considerably...Also, there is a foundation for HH in Canada..It was mentioned on a different health site. http://www.toomuchiron.ca/support/organizations/

Hope this helps.

Fasthorse, did you have HH as well? I have a couple of mercury amalgum fillings and no kidney problems.

Okay, so I might have an answer as to why I've been more tired this past year than in previous years.

I had my physical last Friday and I had some tests done. She tested my thyroid, some vitamins (b12, I know that one for sure) and my iron levels.

I called my doctor's office today and I was told that my ferritin level is at 40! I am so excited for this. My last phlebotomy was November, 2013, so that would also explain why I was soooo incredibly tired during the Christmas season.

This makes me so damn excited and you're the only people who will really understand just how happy this makes me.

I got a list of ferritin levels that I've had since my doctor starting keeping track of it (this doesn't include any of the levels tested from each phlebotomy. This is only from when my family doctor tested it, not the haemo specialist):

April 16, 2010: 613 (this is about almost a year before I started my phlebotomies, when I first complained of fatigue)

August 2, 2010: 556

December 20, 2010: 544

February 22, 2013: 36 (this is two years of maybe... I don't know, 12 phlebotomies in total?)

March 14, 2014: 40

So I have no idea what my level was when I went in for my phlebotomy back in November, but 40 is after my iron levels have started to climb and have been for the past four months. That means, at the very least, I'm climbing incredibly slow.

I'd still like to get in touch with my specialist and ask them on their opinion as to when I should come in next, but oh god, I am ecstatic.

I also spoke with my Specialist today and I just wanted to put what he advised me of in relation to the questions that I asked him:

"Hey Megan,

In a menstruating female, it is often difficult to gauge out when to go for a phlebotomy next. Some can go years without treatment. The max I usually prescribe is 6 months. Sounds like in you every 6 mo might be fine. I flag charts for review should the Hemoglobin drop to <120, or="" if="" the="" ferritin="" is=""><20 or="">200.

Nicole [Nicole was the first person to speak to me about my haemo] was correct regarding the infertility issues [she told me because I was so young I wouldn't have to worry about that]. Hormonal imbalances and deficiencies typically only occur if the ferritin has been >2000 - 3000 for several years. There are of course many reasons for arthritis, diabetes, infertility etc. so often it is hard to say yes this is hemochromatosis vs. another cause."

I just thought I'd post his response for everyone to see.

Hi Megan

It does not sound right that a menstruating woman would go as high as greater than 2000 - 3000. She would NOT be menstruating to get that high and therefore has amenorrhea and infertility problems which was caused at an earlier level. Therefore iron loading would have effected her reproductive organs or pituitary gland earlier in her life. Iron tends to store somewhere where there is the least resistence, and sometimes it is the ovaries.

The Iron Disorders Institute 'Guide to Hemochromatosis' (book, available on Amazon.con) mentions a few case studies regarding this. There were twin sisters (their brother was diagnosed with HH) - one advised to donate blood at 22 yrs because of her elevated levels of iron suggested hemochromatosis. She had fertility issues but managed to have 2 children plus 5 miscarriages, often heard of but not always related to HH.

Her twin sister had more severe HH symptoms and fertility problems.

Another at 25 years struggled with fertility, "a possible sign of hemochromatosis', which after a lot of messing around by doctors, was finally diagnosed.

Again another, was not menstruating at all, suffered all the usual till she got diagnosed, venesected, given heavy doses of oestrogen, past the age of 26, and finally had a period, and happily finally becoming pregnant. Because she was not menstruating, her ferritin grew to 2,900, but the damage was done in her teenage years to prevent menstruation in the first place.

Another, among the usual symptoms, was an inability to concieve. Another was told she was in early menopause, and the final diagnosis was HH.

None of this sounds very scientific, I know, but it is difficult to reduce many pages into a few lines.

I had a dr who is very savvy with HH address my support group and I asked him specifically what is iron overload doing to the body to cause amenorrhea, infertility and early menopause and he said the iron deposits in the ovaries thus upsetting the normal hormonal processes, blocking vessels, scar tissue created etc. Plus another cause can be damage to the pituitary gland which upsets normal hormonal processes too.

As everyone is different, iron tends to deposit in different organs in different people. It can't be generalised.

Just looking at your levels, it appears that who ever was monitoring your venesections was taking it VERY slow, even taking menstruation into account. But you are down there now so time for CELEBRATION! Normally non-HH women can menstruate and also donate 2-3 times per year without any harm. Hb is the most important indicator there.

Good on you, if you are feeling best at 40 then try to keep it there with a frequency that is effective.

Hi Megan have you looked at the symptoms list for Lyme disease. It could be that.