Doctors Are You Kidding Me???

[ajw4790]

Hi everyone!

I am so frustrated and overwhelmed by a multitude of things right now.

One reason is what the post's title mentions. My sleep dr called today and said my Ferritin (iron) levels are REALLY low! I scored a 3 out of the low normal of 60!!!

Thing is I thought the tested my iron (and for overall anemia) before multiple times. I looked at my records I do have, but don't see this being tested before. But, I think I am missing some of my lab work results... so, I am not sure.

I will be SO ANGRY if they really had not tested this until now! Thousands of dollars and 10+ doctors to find this out? Seems pretty basic to me, especially taking into account my presenting symptoms!

AND actually the rheumy at CC (the "it's the pants"- referring to hair loss dr.) also tested it recently, and called to say I was anemic, and that she would send me a script for blood work to see if the anemia has a genetic cause or more nutritional/absorbtion issue. So, I have to get that done when she sends it to me.

Anyone else been told they have this issue? Have you specifically had your Ferritin checked? I think that my presentation my be slightly abnormal, because my hemoglobin/hematocrit numbers have normally not been bad (once or twice slightly low), but not enough to signal this amount of deficiency.

SO... What does this mean??? Wouldn't I like to know?! BUT, low ferritin causes heart palpitations, tachycardia, fatigue, memory/confusion/ADHD symptoms, HAIR LOSS, restless legs syndrome, muscle twitches, tremors etc...

SO, potentially a lot of my issues could be part of this deficiency, but likely not everything or a cure-all, but it may explain why every medication they throw at me doesn't work very well! It probably can explain a decent size potion of my symptoms, but I don't expect it to be the overall answer of why all the medical issues for myself.

If you haven't had this specific test, I would urge you to ask about it. It couldn't hurt (well, more than the needle!!! ).

Please let me know if you have gone through the same issue, and if you did infusions etc...

Thanks!!!

[mcaimless]

Low ferritin is a very common sign of hypothyroidism, as is hair loss. Have you had all the thyroid bloodwork done? Are you already diagnosed and being treated for hypothyroidism? If so, are you only getting T4 treatment?

Please check out this post: http://dinet.ipbhost.com/index.php?showtop...&hl=thyroid

Also an excellent website for those with undiagnosed or undertreated hypothyroidism: http://www.stopthethyroidmadness.com/

[flop]

Hi,

I'd be interested to know what your MCV (mean cell volume) has been on your CBCs. I for years had a normal Hb (haemoglobin) but borderline-low MCV when I then had massive nose bleeds and needed transfusing I got put on iron supplements and did feel much better!

Flop

[futurehope]

My first encounter with serum ferritin, I think, was a test run by my sleep doctor. I was low. In the past, when treating me for iron deficiency anemia, I think they used the hematocrit test.

Luckily, my new Internal Medicine doctor just took my serum ferritin because I told him that my restless leg syndrome is driving me nuts and that the sleep doctor said he wanted it to be over 60 with my RLS diagnosis.

If it turns out there is a simple way for you to feel better via supplemental iron, I think that's great!

I am getting the impression that, unless it's a sleep doctor, the others are not really "experts" about the ferritin test and therefore do not do it.

[flop]

The experts for iron deficiency and anaemia testing are actually Haematologists but any doc with an interest should be able to sort out the right tests.

Flop

[erikainorlando]

Mine was (and perhaps still is) very very low. Can't recall what it was. They only tested me as before I really got a diagnosis I wanted to be tested for iron amounts that are too high. I have family that have this condition (yet I can't remember what it is called).

Anyway...they had to do a detailed test and then found this....but my regual iron...hemoglobin/hemocrit was low but not like the ferritin

Flop - or a one of you who are much more knowledgeable than I - I always thought my hemoglobin/hemocrit rbc's were so low and kept getting lower, was due to the very high hr before the diagnosis..... I never really knew it was my hr. I just knew I couldn't breathe and felt sick. I saw a pulmonologist and my O2 sat was like 77. We all thought I had a pulmonary obstruction. They kept testing my hr when I was sitting...then one day they got me standing and it was 150...so we started to put it all together. The pulmonary lab tech was the one who said to me...you know this could all be your heart...not your lungs.

Erika

[Broken_Shell]

Hi,

My ferritin is 2 and has been very low for years... the highest it has ever been has been in the last seven years has been 5. I also tend to not be anemic, although it is difficult to judge sometimes because on blood work I appear to be chronically dehydrated. However, I am unable to tolerate oral iron supplements - I ended up in the urgent care twice with a bowel impaction, even when I only took one iron pill every other day. My doctors have entertained the idea of giving me intravenous iron infusions, but we have never gone ahead and done so because all of the way my body reacts everything and the high incidence of reactions to IV iron. I even consulted a hematologist to get his opinion as to whether the low ferritin level could be related to any of my other symptoms, but he did not feel strongly that it was. The main problem that I have with the low ferritin is that since I have no iron stores, I cannot tolerate bleeding of any sort, including monthly periods. Recently I have been trying different hormone options to shut off my monthly cycles, but they have resulted instead in episodes of heavy bleeding. I was in the hospital twice within a week until we could get the bleeding under control because my hemoglobin had dropped from 14 to 10 within four days and I was extremely weak and short of breath and could barely sit up.

Please let me know if you find any good information connecting low ferritin levels to either symptoms of dysautonomia or myofascial and muscular problems, or if you find a helpful treatment that improves your symptoms. Have you had any other iron studies run?

Best wishes, Broken_Shell

[ajw4790]

Hi,

Thank you so much for everyone's reply!

I called the dr. today to check on a couple of things. Found out the amount of iron in my body has never been looked at and that this was the first time the ferritin level was looked at. I just feel it is crazy this went unlooked at for so long. But, I guess all my labs done at my normal local health system had normal hematocrit and hemoglobin levels. I do see where at CC early this year they were low and they said it suggested anemia. But, it was so mild and the way they made it sound was kind of like you hear ever since puberty hits, is that young females often show to be slightly anemic and may benefit from a multivitamin. So, I figured that this what what they meant. I never would have thought that if they looked further they would find that my iron stores in my body are close to non-existant.

Iron affects so many things, so no wonder that some of these symptoms persist, and are not helped by medication. I still don't think that it is the answer to all my problems, but I could see that with proper treatment where it may significantly reduce some of my symptoms. Which of course would be wonderful!

Flop,

Although it is a bit old, the most recent MCV I found was 86.3 and that was all the way back in 6/25/07. I honestly am not sure if it has been tested since... My records are pretty out of order and hard to find with the impending move, and I need to go get another new complete copy of my records because I recently gave them to a dr, who was not sent my records.

Before that it was 87.1 (six months prior). I will have to see if I have a more recent test result. What is yours and how is it linked to this?

Thanks everyone!

[ajw4790]

Broken Shell,

I did forget to ask about how/why the dr. you saw did not think that any of your symptoms were related to low ferritin level? What symptoms was he referring to (tachy, arrhythmias, mental issues-ADHD, confusion, memory, fatigue, muscle twitches, RLS symptoms)? Just curious!

Your experience with the iron supplements sounds awful! Did they find out why you had an issue with them? Is it an absorbtion issue?

Thanks!

[flop]

More info on MCV

MCV (mean cell volume) is a test that measures the size of the indvidual red blood cells.

When the body has low iron stores (low ferritin) the body will still make new red blood cells but they don't have the right amount of iron in them so are smaller than normal red blood cells.

If someone is anaemic (low Hb / haemoblobin) and have small red blood cells it is called "microcytic anaemia" - the most common cause for this is iron deficiency. It is quite easy to get the "iron deficiency" diagnosis if you have both anaemia and small red cells.

However you can have a normal number of red blood cells (ie not anaemic as Hb normal) but those cells can be on the small side because the body is using all the iron it can get from your diet to make the cells and has used up all your iron stores. This is the situation that I was in for years - no one took any notice of the low MCV as my Hb was normal.

My typical numbers were Hb 12-14, MCV 79-80.

It was only when I had a major major nose bleed and dropped my Hb from 14 to 8 that people started to take notice. I was given blood transfusions to get my Hb back up to 10. A week later my Hb was back down to 8. When asked about bleeding I said I was on my period (always been very heavy). The doctor worked out that probably for years I had been dropping my Hb by 2g/dL each month (from 14 to 12) then during the month my body worked hard to replace the lost blood before my next period. All of that work making red blood cells had totally wipped out my iron stores and resulted in the ongoing low MCV results despite a normal diet.

To be complete, you can also have a high MCV where the red blood cells are bigger than normal. If someone is anaemic with large RBCs it is called "macrocytic anaemia", the most common causes of that are B12 deficiency, folate deficiency or excess alcohol consuption.

Treating iron deficiency - most doctors prescribe iron tablets but many people can't tolerate them. Usually iron causes constipation but in me it had the opposite effect! I was switched from ferrous sulphate to ferrous gluconate tablets as they are slightly easier on the GI tract. I was supposed to take 6 tablets a day but I could only manage 1 but even that small dose was enough to bring my MCV back to normal in 6 months.

I have just found a bit on Wikipedia that says that as little as 15mg of iron can be enough to correct iron deficiency - the "standard dose" prescribed in the UK is 200mg x3/day ie 600mg per day. So even if iron causes GI problems it might be worth looking for a multivitamin supplement with just a small bit of iron in it or a children's supplement (the GI side-effects are directly linked to the dose, so small dose should mean little GI effect).

It is amazing how much information is on the internet when you go looking for it!

[Broken_Shell]

Broken Shell,

I did forget to ask about how/why the dr. you saw did not think that any of your symptoms were related to low ferritin level? What symptoms was he referring to (tachy, arrhythmias, mental issues-ADHD, confusion, memory, fatigue, muscle twitches, RLS symptoms)? Just curious!

Your experience with the iron supplements sounds awful! Did they find out why you had an issue with them? Is it an absorbtion issue?

Thanks!

Hi,

After reading your post I have decided to get another hemotology opinion. The doctors I have seen all seem to think that low ferritin can only cause symptoms if it leads to actual anemia. However, ferritin is involved in a lot of processes and reactions in the body, and I personally believe that it is feasible to think that it could lead to problems with fatigue, myofascial pain, dizziness, etc.

I am prone to constipation, and since iron can cause constipation and GI issues, the supplements were just too much for my body.

I would really like to try IV iron to see if it would make me feel better in general to get my ferritin level up to normal, but since I am so sensitive to everything and would likely have some bizarre adverse reaction, I am afraid that I will make more problems by going ahead with it. It is on my agenda to think about during the summer months, and I am going to set up an appointment to get another opinion on whether or not the low ferritin levels could be related to my other symptoms. I will let you know if anything comes of my pursuit for answers! Please keep me updated as well.

~ Broken_Shell

[Dizzysillyak]

It's just crazy what doctors don't bother to look at. Mine was extremely low in 2005 from heavy periods and my gyno acted like I'd done something wrong.

Turned out that I was a celiac at that point in my life too and my B12 was low too. No telling what else was off since no one ran any other nutrient tests until last year. Traditional doctors are just clueless when anything other than meds or surgery is involved ... Ok, I'm done ranting for now ...

I couldn't digest supplements so I got mine back into range by eating rare buffalo steaks and other foods that were cooked in a cast iron pan. I did the IV once but my doc decided it was too risky to continue with. I don't know how he came to that conclusion since I didn't have a bad reaction ...

I still have orthostatic intolerance but I feel a lot better than I did when I was low on iron, etc and eating gluten. FWIW At this point, fish oil, CLO, EPO and E seem to be helping me with my OI ...

[goldicedance]

My husband developed anemia with symptoms of light headedness, dizziness, fast heart rate. He went to his

cardiologist who did an EKG and then sent him to our internist (pulmonologist) who ordered the blood work. Turned out he had anemia. He was then sent to a gastroint. doctor who discovered he had a bleeding ulcer.

It took him several months to bring his iron levels up. He took Vytron C - apparently the body absorbs iron better when combined with Vitamin C. He also got his ulcer under control.

When I first got sick (some 2 decades ago), my pulmonologist tested for anemia..one of hte first tests.

Sometimes doctors don't look for the most basic things.

Good luck.

[flop]

Erika,

you asked about high heart rate causing low haemoglobin / haematocrit / RBCs and low oxygen sats.

I don't know of any reason for high HR to cause anaemia. However having anaemia will cause a high HR - if the body doesn't have enough red blood cells to carry oxygen round the body, it will compensate by making the RBCs travel faster and go round more often (by increasing your heart rate).

I know that some people with mechanical artificial heart valves can get anaemic due to the metal valve squashing / breaking up the RBCs when it closes.

Low oxygen sats - this one I think I can answer! When they measure oxygen sats it is usually by putting a probe onto your finger (or earlobe) (pulse oximeter). The probe shines a special red light through the finger and measures the light that gets absorbed. Because oxygenated-haemoglobin and deoxygenated-haemoglobin absorb the light differently the probe works out how much of the haemoglobin is oxygenated (%).

The problem is that the probe is put on a part of the body far away from the heart. The probe assumes that there is a good blood supply getting to the finger. Lots of things can reduce the blood flow to the fingers - POTS, low blood pressure, cold hands, raynaud's, being outdoors on a cold day and many more. These problems reduce the peripheral circulation and cause a "false low" reading on the pulse oximeter.

When the blood flow to the fingers is low, the blood that does get all the way to the finger tip will have had most of the oxygen it was carrying taken away to be used by the tissues that it passed by slowly - it is too slow getting from the heart to the finger so it doesn't still have all the oxygen it would have picked up from the lungs. This means that the blood in your finger might have low oxygen but it doesn't tell you anything about the blood just leaving your heart.

The pulse oximeter gives an estimate of the oxygen saturations. The only way to get an actual blood oxygen saturation measurement is to have arterial blood gasses measured. In this test the doctor takes a sample of blood directly from an artery (usually the radial artery on the inside of the wrist). The blood drawn from an artery will be much brighter red than the blood taken for all other tests which comes from the veins. If the arterial blood is very rapidly annalysed it will give a reading of how much oxygen is in the blood. These tests aren't done that often as for most people the pulse oximeter gives a good enough result(plus arterial samples are much more painful to take and there is more risk of bleeding / lots of bruising and even damage to the artery).

If a person really has oxygen saturations of 77% they would look very ill and have blue coloured skin especially the lips and tongue (central cyanosis).

I hope that lot makes sense!

Flop

[erikainorlando]

Flop -

Thanks... you are so knowlegble. I wanted you to know they did the arterial blood gases test...that is where it was 77. I couldn't walk across the room. The lady thought I had a pulmonary obstruction... I didn't. Beta Blockers changed my life! I started to be able to move alittle again. I don't worry so much about my O2.... It just seemed before they put me on the bb I kept getting lower and lower rbc, hemoglobin, hemocrit, lost a bunch of weight, and my O2 sat got bad. A doctor friend of mine (GP) who was probably grasping said that if the heart rate is so high (affter 150) your lungs can't produce enough oxygen to keep up with it....?? Have you ever heard of this?

Thanks,

Erika

[ajw4790]

Hiya again,

I just wanted to pop in and say that I was prescribed prescription iron supplements, but I went to a dysautonomia specialist on Friday, and he said that many people tolerate the OTC strength much better than the prescription. He said the one in the yellow box made by Naturemaid. I only have found the one made by Naturemade, so I don't know if the other one exists.

So, if you are unable to take the other this may be worth the try. Also, to help absorb the iron he tells people to drink orange juice with it, because the vit C helps to absorb it. And Colace etc. can be taken if side effects are worse enough. I think start with one daily and can increase to two a day if able? (that part I kinda forget! , but I figured that was a ways away).

I haven't started to take it yet, but will soon, and hope to get my ferritin level up! I have worked on increasing iron more in my diet and taking my daily multivitamin more regularly.

He did seem to think it was important to work on this deficiency, but not overly worried etc. But, he was nice and spent quite a while on how to best try and treat it now.

Hope this helps some of you in the similar boat as me!

[Rene S.]

Hi everyone!

I am so frustrated and overwhelmed by a multitude of things right now.

One reason is what the post's title mentions. My sleep dr called today and said my Ferritin (iron) levels are REALLY low! I scored a 3 out of the low normal of 60!!!

Thing is I thought the tested my iron (and for overall anemia) before multiple times. I looked at my records I do have, but don't see this being tested before. But, I think I am missing some of my lab work results... so, I am not sure.

I will be SO ANGRY if they really had not tested this until now! Thousands of dollars and 10+ doctors to find this out? Seems pretty basic to me, especially taking into account my presenting symptoms!

AND actually the rheumy at CC (the "it's the pants"- referring to hair loss dr.) also tested it recently, and called to say I was anemic, and that she would send me a script for blood work to see if the anemia has a genetic cause or more nutritional/absorbtion issue. So, I have to get that done when she sends it to me.

Anyone else been told they have this issue? Have you specifically had your Ferritin checked? I think that my presentation my be slightly abnormal, because my hemoglobin/hematocrit numbers have normally not been bad (once or twice slightly low), but not enough to signal this amount of deficiency.

SO... What does this mean??? Wouldn't I like to know?! BUT, low ferritin causes heart palpitations, tachycardia, fatigue, memory/confusion/ADHD symptoms, HAIR LOSS, restless legs syndrome, muscle twitches, tremors etc...

SO, potentially a lot of my issues could be part of this deficiency, but likely not everything or a cure-all, but it may explain why every medication they throw at me doesn't work very well! It probably can explain a decent size potion of my symptoms, but I don't expect it to be the overall answer of why all the medical issues for myself.

If you haven't had this specific test, I would urge you to ask about it. It couldn't hurt (well, more than the needle!!! ).

Please let me know if you have gone through the same issue, and if you did infusions etc...

Thanks!!!

Hi I know this is late, but I was going through the older posts and this caught my eye. My Ferritin level is 8 but my hemoglobin is within normal range. I'm not sure of the connection The POTS dr. ordered the test and when the results came back he said to followup with my GP. She wasn't concerned and said that I should just take the Feosol a few times a week. I'm totally baffled. Why would the Ferritin be so low the hemoglobin normal? I did have a few times where my hemoglobin dropped. Very frustrating.

Anyone have any answers?

Thanks!