Will I be treated with phlebotomy with these results?

Allergies, blood and immune system
1

Hello!

Please can you help me? I've come to understand that unless ferritin is above 250 Dr's tend to do nothing. I am aware that people have ferritin in the thousands and make mine look like nothing, but I think things are relative as people are all different.

Can you tell me if these results look like something the Dr would or should treat with blood letting?

Haemogloblin: 14.1 (range: 11.5-15.5 g/dl)

Ferritin: 190 ug/L (range 13-150)

Iron: 31.9 umol/L (range: 6.6-26.0)

Unsaturated iron binding: 21.1 umol/L (range: 20-66)

Total iron binding capacity: 53 umol/L (range: 41-77)

Iron binding saturation: 60% (range 15-50)

I also have hypothyroidism and take levothyroxine (T4) and liothyronine (T3) daily. The high iron only came to light due to an endocrinologist who performed a range of tests. Now my thyroid bloods are fine but I understand that iron toxicity and hypothyroid symptoms are the same, hence still not feeling well.

Amongst other things, I get extremely tired and out of breath easily. I don't sleep well and get night cramps and tetany, plus I have pains in my muscles and also joints that seem to move around here and there, I could go on.

If you can answer the above I would be very grateful and then to know the answers to the following may be useful too.

Giving how many pints of blood will bring the ferritin into the safe range, below 30 ug/L isn't it (for people with HH, I hope to be tested)? Or to put it another way, my iron level is 31.9, how many mg's is that above the 26 safe range and how many pints of blood would it take to get it out? Does this make sense? I want to know how many pints of blood needs to be drained to reduce the iron to normal?

Once the ferritin is within the safe/normal range, will the iron (not the ferritin) still be high in my blood test results?

Why is aggressive blood letting important? What happens if it's done over a longer period and less aggressive?

Next month I have an appointment with a haematologist. Any suggestions on what I should ask him and how I can induce him to start working on me without delay?

Any suggestions are very welcome.

Thanks for your help.

2

First off, it's a bit difficult to know what exactly your issue is without knowing whether or not you've been formally diagnosed with haemochromatosis. The issue I'm having here, besides not being a haematologist, is that from what I understand, there are a lot of similar symptoms between hyperthyroidism and iron overload:

1. Rapid heartbeat (tachycardia), irregular heartbeat(arrhythmia) or pounding of your heart (palpitations)

2. Nervousness, anxiety and irritability (can cause sweating, fogginess, irritability, etc.)

3. Fatigue, muscle weakness, etc.

The number one symptom of haemochromatosis is fatigue. Fatigue also causes a number of other symptoms - you might feel "foggy" or "drunk" in the head, maybe like you haven't fully woken up in a day, I can often sleep for hours on end (I used to not wake up on weekends until 2:00 p.m. if no one decided it was time for me to get up), I would become a bit forgetful and I just didn't feel like doing anything. Does that sound at all like you?

And how old are you? The longer the iron overload isn't taken care of and dealt with, the more complications can develop from the iron storing around your body. I was lucky in that I was proactive about seeing my doctor and I was diagnosed under the age of 25 so damage wasn't done to my body. What happens is that the iron will deposit itself around your various organs and it will kill them if left untreated. It can lead to heart failure, cirrhosis of the liver, liver cancer, etc. That is why it's so important to be a bit more aggressive in terms of your phlebotomies. You want to rid your body of the excess iron fast so that you can limit the amount of damage done to your body.

Some people need to go in once, or even twice a week for a period of months. I was lucky in that I only needed to go once every two weeks and that only lasted for two months before it was spread out further.

I can't say how many you'll need to have if you do indeed have iron overload, as every person is different. I didn't need that many but I'm young and I'm a menstruating female so losing that blood every month helps me out.

When I started my phlebotomies my iron level was at about 600. At this time it's at 40 and that's an acceptable range for where I live (I live in Canada, and the doctors here say that a good level is anywhere between 12 and 200). My hemoglobin count right now is at about 138 and the doctors here say that a good level for that is between 120 and 160.

Another thing I'd like to ask is how long has your iron been a bit high? People often bounce around in terms of what their levels are depending on if there were any changes in their diet, etc. For instance, if you eat a lot of red meat it would most likely be higher than a vegetarian but at the same time you could not have iron overload. You know what I mean?

How certain was your doctor that you might be suffering from haemochromatosis?

3

Hi Megan,

Thanks for your reply, I do appreciate all the trouble you've gone to but rather than go into all the details you've asked of me, if you're able to tell me at what level the ferritin has to be before they start blood letting I would really appreciate you telling me, as I understand it, I will not be able to have phlebs with a ferritin below 250. Do you know anything about that?

Also, as far as I'm aware, it doesn't matter at this point if I have HH or something else, iron is iron and the way to get it out is phlebotomy.

Thanks!

4

Hi Yak Yak, Your iron binding sat % indicates Hereditary Haemochromatosis as it is >40%. Your ferritin iron is not all that high yet, they allow up to 200, so you may have a problem getting phlebs. Each pint of blood drawn generally removes 0.25 grams of ferritin iron. Hard to do the maths as it will depend on how fast you are loading iron as well.

E.g., if you ferritin was 200 on day of phleb, it will be about 175 the next day or so, but will then increase a certain amount depending of your avidity till your next phleb. If you were about 1000, you would start off weekly at least (some bi-weekly) to reduce the ferritin iron more than you absorb it.

If you had a high ferritin level and a <40% transferrrin saturation, your iron loading would be from other causes other than Hereditary Haemochromatosis, e.g. fatty liver, inflammation, infection, malignancy.

But yours is other way around. If you have relatives with HH, you may be successful in getting a genetic test at this point in time, and maybe your doc is more generous and will do the genetic test now because of your TS% being so high.

If you are really suffering from fatique and pain (which sounds like it), you may be able to convince your doc to do one phleb and see how you feel afterwards. Otherwise go to your nearest Blood Bank and start donating every 3 months, because with that level that might be all you will need to do, at this stage. And it will be the best action to take for your health.

With HH, your iron (as opposed to your ferritin iron) can still remain high even though you have phlebs.

Can't answer any more questions at this stage as I am off for surgery and will be without computer for days sad but Megan is good and knowledgeable.

I hope this helps.

5

If you have to take the blood donation track, keep a record of ferritin iron levels (test at least every 6 months) and how much should have been deducted by your blood donations i.e. 25 mcgs, and if your ferritin is getting higher rather than reducing, that is more ammo to take to your doc to get more frequent phlebs.

If your Blood Bank allows every 2 months, do so to begin with. They should always test your Hb first and they will tell you if your red blood cells are to low (not being replaced fast enough to do another donation). In which case, you would drop back to 3 months.

This won't get your ferritin iron down to <30 fast, but it is better than no action.

6

In the UK men can donate blood via the NHS blood service no more frequently than every 12 weeks and women every 16 weeks, which also has to take in the rules about travel, infections, use of antibiotics, dental work etc. May be different - though will be largely similar I guess- elsewhere in the world.

See blood(dot)co(dot)uk > giving blood< for the UK.

But worth undertaking if you are not offered venesection.

Certainly your TS% is consistent with haemochromatosis but as your ferritin is not high you won't be storing excess iron (yet). Having a normal ferritin doesn't exclude haemochromatosis with a raised TS%.

Whether you are offered venesection with your current results depends on the approach of your doctor. I suspect in the UK it would be a watch and wait approach, ie keeping an eye on your ferritin, though perhaps a good idea to do some other tests to check you haven't got any organ damage - liver damage, diabetes etc. if they are all ok, then well and good.

Best of luck with this.

Sadly you are in a grey zone, likely HH but with results that don't prompt immediate action, and that can be frustrating.

Blood donation as frequently as you are allowed may be the way to go. There again you may then never get formally bled as you are off loading through donation and your ferritin may then never get to a point where your doctor wants/needs to do anything.

Best

CF