Thalassemia Patients and Friends

Discussion Forums => Thalassemia Minor => Topic started by: CatherineM on August 16, 2011, 02:43:26 AM

Title: Anemia without low iron
Post by: CatherineM on August 16, 2011, 02:43:26 AM
We have just change doctors.  My 16 yr old daugher has been on iron tablets for 18 months for mild anemia.
This has resulted in her hemoglobin levels going down but the iron stores going up but still low.

She is now being tested for thalassemia (waiting test results).
We were told by other doctors that the anemia was due to amount of exercise.

Hemoglobin is now 106, could this result in fainting while exercising.

Are there other supplements that we help with raising hemoglobin levels.
Title: Re: Anemia without low iron
Post by: Valkyria on August 16, 2011, 04:32:06 AM
There are numerous causes of anemia, iron deficiency just one, but it is the most common, that is why iron tablets are usually the first means a doctor will recommend to correct it; especially if the blood work shows the red cells to be microcytic (low mean corpuscular volume aka MCV) and hypochromic (low mean corpuscular hemoglobin aka MCH)

The only type of anemia I’ve heard of caused directly by exercise is footstrike hemolysis, this happens when red blood cells in the feet are destroyed by the repeated impact of running, marching etc.

An Hb of 106 is considered mild anemia, but fainting during exercise with it is likely if the exercise is strenuous and accompanied by dehydration. The effects of mild anemia can also be exacerbated by many co-morbid conditions such as asthma

Title: Re: Anemia without low iron
Post by: CatherineM on August 16, 2011, 11:54:07 AM
My daughter also has asthma and low blood pressure 85/40

Good to know the anemia is only mild

She enjoys competitive swimming and is currently doing 9 x 2 hr swimming session per week.  I was just wondering if this is too much exercise for someone with even with mild anemia.

Test result from 03/08/2011                    23/07/2010
Haemoglobin 106                                     114
Hct 0.32                                                 
RBC 4.1
MCV 78                                                   82
MCH 26                                                   26.7
MCHC 333                                               326

S Iron 3 L                                               
S TRF 2.3                                                2.6
S TRF. SAT 5                                           9
S Ferritin 30                                             16

Thalassemai screen has come back clear, but testing agency recommends retesting in 3 months.  But Sarah's doctor says he would bother as there is no history in the family and she is not in any of the risk groups.

He also says to continue with blood tablets and rich diet.  He is of the believe that the S Ferritin needs to increase to between 50-80 before the haemoglobin levels begin to increase.

Also gave as a referral for Full Blood Examination and Iron Studies, to be completed in 2 months after taking iron tables everyday.

Thank you any advice
Title: Re: Anemia without low iron
Post by: Andy Battaglia on August 16, 2011, 10:45:40 PM
Hi Catherine,

Vitamin C can be taken with iron to aid absorption. Her iron numbers look extremely low for someone who has taken iron for 18 months. I would talk to the doctor about trying a different form of iron, as it is often trial and error to find a form of iron that is easily absorbed.
Title: Re: Anemia without low iron
Post by: CatherineM on August 16, 2011, 11:06:32 PM
Thanks will try taking Viamin C.  Due to her age, I not sure if she has been taking the iron everyday.
I have told Sarah, if levels do not improve will have cut some of the swimming sessions.  This should her remember to take the tablets.

Thanks for your advise.
Catherine
Title: Re: Anemia without low iron
Post by: CatherineM on August 16, 2011, 11:13:33 PM
Is worth having my other two daugher iron levels test.  They have never had any blood tests.  They are aged 14 and 12.

Thank you your advice.
Catherine
Title: Re: Anemia without low iron
Post by: Andy Battaglia on August 17, 2011, 12:58:24 AM
If there is any sign of anemia in the others, such as tiredness or fatigue, get them checked. If not, there is no reason to bother.
With teens, it is often a matter of maintaining a good diet. Often meals are rushed and incomplete. Sarah may pay more attention to her diet and try to get more fruits and veggies if her activities are subject to how her health is. (I realize how hard this can be with teens. I have my own ongoing battle with my 16 year old son and his weak diet).
Title: Re: Anemia without low iron
Post by: CatherineM on August 26, 2011, 02:56:46 AM
Thanks for advice Andy

No 2. daughter Rachel, is very small.  She does not like to excercise and would sit still all day if she could.
She isabo ut 2 cm taller than her 12 years old sister.

She has always been slow growing eg was born 10 lb 1 oz but fail to double her birth weight until she was 13 months old.

She is now 14 year old and has very few signs of pubertly

Is slow growth a sign of amenia?

Many thanks for your assistance

Catherine
Title: Re: Anemia without low iron
Post by: Andy Battaglia on August 27, 2011, 01:36:27 AM
Hi Catherine,

Anemia stunts the growth if the Hb is chronically low during development, as low oxygen levels do have a negative effect. With thalassemia, there are also bad red blood cells produced that are useless and die early, contributing to the anemia. In addition, there are unmatched alpha globin chains that bind together into tetramers, which cause oxidation throughout the body and can have a harmful effect on the pituitary gland. Rachel actually sounds like a symptomatic thal minor. I would recommend a hemoglobin electrophoresis test to see if a hemoglobin disorder like thal minor is present. Since both girls seem to be affected by anemia, this test will be very helpful in determining if it is a genetic trait or a nutrient absorption problem.
Title: Re: Anemia without low iron
Post by: CatherineM on August 27, 2011, 04:14:04 AM
Thanks, will start with getting iron studies for Rachel done.

And request a copy of Sarah's negitive test which I was told by the doctor said to retest in 3 months.

Begin thank your assistance.

Catherine
Title: Re: Anemia without low iron
Post by: anisa on August 28, 2011, 03:32:28 PM
HI,

I'AM ALSO TAKING IRON + VIT. C, BOTH OF THEM IMPROVED MY VERY LOW LEVELS OF IRON. MAYBE YOU MAY TRY COOKING(BAKING) FOOD LIKE LIVER AND SPLEEN TO YOUR GIRLS, I HAVE TAKEN TWICE A WEEK LIVER/SPLEEN, THIS TWO ORGANS HAVE A LOT OF RBC WHICH MEANS MORE IRON IT MUST HELP.

ANISA
Title: Re: Anemia without low iron
Post by: Kiya on August 28, 2011, 04:25:21 PM
Hi,

Even i have given goat liver and kidneys to my 5 yr old. It has increased iron to a great extent. though hb will take its own sweet time (in case of thal minors) before we know at what levels she will stabilize.

Take care
Kiya
Title: Re: Anemia without low iron
Post by: CatherineM on August 29, 2011, 11:47:51 AM
Took Rachel to doctors to only to be told she is not short and just wait she will grow a little more.

Rachel is 5ft 2 1/2 (age 14 and 1/2) according to doctor is on 48th percentile for height.  After Rachel told the doctor she was short for her family we got a referral to paediatrician.

Father is 6ft 3
I'm 5 ft 5
Sister 16 is 5ft 9
Sister 12 is 5ft 2

Will make appointment another GP and one with paediatrician, and will hopefully be able to get blood test out of one of them.
Title: Re: Anemia without low iron
Post by: Andy Battaglia on August 29, 2011, 07:54:39 PM
The growth can be unpredictable but if she is sluggish with poor appetite, it's good to check for both anemia and vitamin D deficiency.
Title: Re: Anemia without low iron
Post by: CatherineM on September 02, 2011, 03:10:59 AM
Thanks for all your help.

Have Sarah's Haemoglobin Electrophoresis results of 10/08/2011

B Haemoglobin A2  2.7% (1.8 - 3.5)
B Haemoglobin F <1.0% ( <1)

Comments:
Borderline red call indices with borderline ferritin level and mildly elevated inflammatory markers. Recommend trial of oral iron with review in 6 months.
If the red cell indices remain borderline, a repeat HBEPG with DNA analysis should be considered to exclude an alpha thalassaemia trait.

I gather the above rule out thalassaemia minor.

Regards

Catherine
Title: Re: Anemia without low iron
Post by: Andy Battaglia on September 02, 2011, 02:13:55 PM
Catherine,

It does not look like beta thal trait, but does not rule out the possibility of alpha trait. If iron does not raise the HB, the suggestion in the report is a DNA analysis after 6 months of iron if iron does not solve the problem. This doesn't mean there is a likelihood of alpha trait, but it shows that iron deficiency and alpha trait give very similar test results.
Title: Re: Anemia without low iron
Post by: CatherineM on October 13, 2011, 01:57:43 AM
Hi Everyone

My daughter has been taking iron tablets due to iron deficiency anemia for the last two months.

Her doctor has adviced me verbally that her hemoglobin has dropped to 91 (from 106).

Should I  worry?  Is this still mild anemia?   We see the doctor again on Monday.

Regards

Catherine
Title: Re: Anemia without low iron
Post by: CatherineM on October 17, 2011, 10:21:21 AM
Hi Andy

These are Sarah's latest test results:

Haemoglobin 91 *
Hct 0.29 *
RBC 3.9
MCV 74 *
MCH 24 *
MCHC 320
RDW 16.5
Platelets 298
White Cells 5.9
Neutrophils 4.3
Lymphocytes 1.0 *
Monocytes 0.4
Eosinophils 0.2
Basophils 0.0

S Iron 2 *
S TRF 2.1
S TRF SAT 4*
S FERRITIN 71

The only result that has gone up after 2 months of iron tablets is S Ferrtin.

Does this still look like iron deficiency anemia?  


* These are marked with "L"

Thanks for your assistance.

Catherine
Title: Re: Anemia without low iron
Post by: Andy Battaglia on October 18, 2011, 01:52:37 AM
Catherine,

Yes the low iron numbers do look like iron deficiency. The ferritin has risen but the other numbers are still below normal. In the long run, iron rich foods may be more effective than iron tablets. Diet is the factor that can be controlled but can be especially difficult with teens because of schedules and also food choices. Short term, some doctors will prescribe IV iron to try to get the levels up to normal.  As is typical, alpha thal trait cannot be ruled out without a DNA test so its involvement could have a slim possibility, but it shouldn't affect tested iron levels, so it does look like deficiency.
Title: Re: Anemia without low iron
Post by: CatherineM on October 18, 2011, 02:16:00 AM
Thanks for your advise

At least I know she is taking the iron tables.  Although the anemia has lot worse, overall she feels the best she has in months.

We will see whatt the blood tests show in two months.  We eat meat every day so can't add anymore meat to the diet but will try to add more leaf greens.

Catherine
Title: Re: Anemia without low iron
Post by: CatherineM on November 01, 2011, 10:20:09 PM
Hi Everyone

My daughter has now has a diagnosis with Irritable Bowel Sydndrome with Iron deficiency anemia.
They believe these are both diet relatived.  She is now missing on average one day of school per week.

We are about to start food testing.

Is there any reason to avoid broad beans (fava beans), I can see from this site they are a problem for some people.

Regards
Catherine
Title: Re: Anemia without low iron
Post by: Andy Battaglia on November 01, 2011, 11:11:08 PM
Hi Catherine,

Fava beans can cause favism leading to hemolysis in alpha thals, resulting in a sudden drop in hemoglobin level. There are reported cases of beta thals also having favism. However, non-thals can also have favism, as this relates to G6PD Deficiency. Everyone with Favism is G6PD Deficient but not all with G6PD Deficiency have favism.

http://g6pddeficiency.org/index.php
Quote
G6PD Deficiency, a disorder involving the X-chromosome, was once thought to be symptomatic only in men. G6PD Deficiency is now known to be slightly more common in women than men though the symptoms are generally not as severe unless both X-chromosomes are affected.

Other beans and legumes, such as soy are also implicated in favism in some people. If favism is suspected there are tests to determine if it is present. It is especially prevalent in those of Mediterranean origin and has been noted to have a high rate if incidence in Australia among people of this origin because fava beans are a common food in Australia. In people with severe favism, the pollen of the fava plant can cause severe hemolysis and even death.
Quote
The diagnosis of G6PD deficiency is made by a quantitative spectrophotometric analysis or, more commonly, by a rapid fluorescent spot test detecting the generation of NADPH from NADP. The test is positive if the blood spot fails to fluoresce under ultraviolet light. In field research, where quick screening of a large number of patients is needed, other tests have been used, however, they require definitive testing to confirm an abnormal result. Tests based on polymerase chain reaction detect specific mutations and are used for population screening, family studies, or prenatal diagnosis.

If broad beans are part of the diet, it would be easy enough to exclude them for awhile to see if the Hb rises. If it does, testing for G6PD deficiency should be considered.
Title: Re: Anemia without low iron
Post by: CatherineM on November 27, 2011, 10:18:52 PM
Thanks for your reply, Andy.

Won't give her anymore broad beans, not worth the risk no matter how small.

We have had major change of diet over the last couple of weeks as Sarah has tested positve for lactose intolence and boardline fructose malabsorption.  This has required the removing of wheat, rye, lactose, onion, garlic, apple, pear plus a number of other things from her diet. 

Catherine


Title: Re: Anemia without low iron
Post by: Dori on December 03, 2011, 01:03:14 PM
I am sad to hear about food intolerance. Must be difficult. Have you notice any changes since her diet changed?
Title: Re: Anemia without low iron
Post by: Prets on December 03, 2011, 01:17:33 PM
Hi,

I think i mentioned this on another thread, but iron supplements caused my Irritable bowels. I went on a gluten free diet for 3 years, and am back on a normal diet now. I cant digest Fats, I have to take enzymes with my meals.

Since iron supplements did not help me even after so many years, I stopped taking them. My hemoglobin seems to stay the same either way.

Keeping a diary helps, that way you may be able to identify what causes problems for her.
Title: Re: Anemia without low iron
Post by: CatherineM on December 04, 2011, 10:19:47 PM
She is having a lot more good days on the new diet.

We had a slip up with milk and she was sick for 2 days.  This has made her much more carefully but trying to avoid milk and milk products.

She hasn't missed any school in the last two week, which is a good thing as she has began fast start for year 11.

She swimming times have improved slightly and still a long way from what she was 12 months.

She has lost 5 kg which is quite concerning as she has no weight that she can afford to lose.

On side note my middle daughter has been to seen a specialist because she thinks is short.  Outcome she is not short as she falls between 10% and 90% on growth charts but as she is more that 10 cm shorter that what her expect height should be using her parent heights the doctor has ordered blood tests and waist scan and she will be tested for anemia for the first time.  During some of the blood tests order it will six weeks for results.

Catherine
Title: Re: Anemia without low iron
Post by: CatherineM on December 05, 2011, 04:45:02 AM
Pretty

Currently doing a iron tablet trial for six months.

4 month blood test due this week.

Her fathers sister has problems with fructose and lactose, and after the change in diet her hemoglobin levels improved.

Catherine.
Title: Re: Anemia without low iron
Post by: CatherineM on December 17, 2011, 10:47:42 AM
Sarah last blood test show the hemoglobin level has remained stable but iron levels other the S Ferritin are still low.

Results are as follows:

Haemoglobin 93 L
Hct 0.30 L
RBC 4.1
MCV 72 L
MCH 23 L
MCHC 317
RDW 16.4
Platelets 312
White Cells 3.9 L
Neutrophils 2.6
Lymphocytes 0.7 L
Monocytes 0.4
Eosinopils 0.1
Basophils 0.0

S Iron 3 L
S Trf 1.8 L
S TRF Sat 7 L
S Ferritin 80

This is the first test where White Cells and S Trf been marked as low.

The doctors has decided to test for alpha thal as she was not happy with these results.
Title: Re: Anemia without low iron
Post by: Andy Battaglia on December 17, 2011, 06:20:48 PM
Catherine,

What test will they be doing for alpha thal? Her MCV and MCH and previous electrophoresis all support a possible alpha thal trait diagnosis, but they also support an iron deficiency diagnosis. In the end, a DNA analysis is the only sure method to determine alpha trait.
Title: Re: Anemia without low iron
Post by: CatherineM on December 18, 2011, 09:25:05 PM
Hi Andy

I not sure what test they have done will try and find out a post results when I get them.

Sarah and I have decided to stop the iron tablets to see whether the IBS improves.  She has been taking the iron tablets in the morning.  She stomach begins to ache round 4pm (mild) and as night progress get worse.  The pains is so bad that it wakes she up around 3 am and she rolls around in pain.  She has these pains for 7 days straight.

Pretty

How did you know that the iron tablets were making your IBS worse?
Title: Re: Anemia without low iron
Post by: Andy Battaglia on December 18, 2011, 10:50:25 PM
Catherine,

I found iron intolerable. It bloated my stomach and killed my appetite. I can relate to the pain it causes. After a short trial on iron I quit. I found I couldn't even tolerate 10 mg iron in a multi. I raised my hematocrit from 25 to 47 solely by a vegetarian diet (a veg diet is a challenge because there is none of the easily absorbed iron found in meats). Often diet is the only long term strategy that works. Keep in mind that taking vitamin C with iron rich meals will aid absorption.
Title: Re: Anemia without low iron
Post by: CatherineM on December 22, 2011, 05:09:08 AM
Haemoglobin Electrophoresis  15/12/2011

B Hemoglobin A2 2.8 (1.8-3.5)
B Haemoglobin F <1.0 (<1)

Comments
Results are suspicious for alpha thalassaemia trait.  Testing of the partner for thalassaemia prior to pregnancy is suggested to determine whether genetic counselling and/or prenatal diagnosis are required.  DNA analysis is recommended to investigate for alpha thalassaemia. This specimen has been sent to Southern Health Clinical Genetics Laboratory for further evaluation.  Please refer to their report to follow.

S IRON 2L umol/L (5-30)
S TRF 1.9L g/L (2.0-3.6)
S TRF. SAT 4L (10-45)
S FERRITIN  162 NG/mL (30-200)

As mentioned earlier we have stopped iron tablets to issues with stomach aches.

The doctor wants us to restart in a weeks time. S FERRITIN  has double in a week. Any thoughts on restart iron tablets.
 
Catherine
Title: Re: Anemia without low iron
Post by: Dori on December 22, 2011, 08:40:50 AM
Maybe, and I say maybe because Andy knows a lot more about it, serum ferritin must raise first more before the other values will start to rise (too)? How are her levels of vit b12? If I am correct one need vit b12, folic acid and iron to boost ery's/young red blood cells.

Conclusion: we need help. :)
Title: Re: Anemia without low iron
Post by: CatherineM on December 22, 2011, 09:53:49 AM
S total b12   303 pmol\L (200-700)
RBC folate 2470 nmol/L (800-3000)

These results are from 3 August 2011

Title: Re: Anemia without low iron
Post by: Prets on December 23, 2011, 03:37:11 PM
Catherine,

Iron pills gave me severe stomach aches and constipation. Even managing with laxatives was difficult to ease myself.

I would get ok as soon as the iron pills were stopped. In the long term, I developed hormonal problems, which again became normal after my iron was stopped completely.

The ferritin levels look normal, mine are just 10-20. Lets wait for others to reply. What i understand is that normal ferritin does not require iron supplementation. Unwanted iron will cause problems.
Title: Re: Anemia without low iron
Post by: Andy Battaglia on December 24, 2011, 07:43:28 PM
Catherine,

Would it be possible to put off iron until you get the results of the alpha thalassemia test? The serum ferritin is towards the high end of normal and has shown a steady improvement. One strategy could be to wait a month without iron and then test again to see if there is change in either direction. I am hesitant to say she should try oral iron while continuing to deal with digestive issues and refining her diet. Oral iron may interfere with your efforts to find which foods she can eat without problems.

FYI, the anemia that matches her current readings is anemia of chronic disease (ACD). If it is found that alpha thal is not present, ACD should be investigated.
Title: Re: Anemia without low iron
Post by: CatherineM on December 29, 2011, 05:36:54 AM
Thank everyone for your replies.

We had a trip to the emergency department on Christmas Eve and stayed 5 hours (due to stomach pains).

The hospital has written a letter to the GP asking that Sarah be referred to Gastroenterology.  The hospital was worried about her blood presure and pulse rate.

I am posting results they obtained.  I don't know what most them mean.

Bloods:
hb 90
MCV 72
WCC 14.1
Neuts 11.6
IM screen negative
albumin 18
CRP 80
iron 2
transferrin 1.6
b12/folate normal
TSH normal
BHCG negative

Most likely viral illness with chronicity features

Back to doctors on Saturday for referral.

As of today sleeping about 18 hours day, very pale and grey around eye area

Regards
Catherine

PS Currently not taking iron tablets.



Title: Re: Anemia without low iron
Post by: CatherineM on January 03, 2012, 11:38:42 AM
Just received referral letter from doctor. The doctor had also requested a copy of a  report from a  pelvic  ulttasound from 6 months ago which we were led to believe was clear.  Only it is not.

It now looks like the anemia is due to acd. Eg inflammatory bowel disease. Now awaiting further testing to confirm this.

Thanks everyone for support especially Andy.

Catherine
Title: Re: Anemia without low iron
Post by: CatherineM on January 12, 2012, 12:04:43 AM
Hi Everyone

Saw specialist yesterday.

She believe alpha thal is unlikely as it should have show up earlier but does need to be excluded.

She also believes Sarah's iron level are zero.  Ferritin is a inflammatory marker.  Currently not taking iron supplements.

Sarah will be hospitalised if her weight drops further.  Now 48kgs, 172.5 cms.  She starting to lose muscle as their is no fat lefted.

Thanks for the group support.

Catherine
Title: Re: Anemia without low iron
Post by: Prets on January 12, 2012, 04:46:33 PM
Catherine,

I pray Sarah feels better soon. How are the doctors treating her medically?

What does it mean by ferritin is an inflammatory marker? Did the specialists say that the inflammatory bowel disease keeps her iron or ferritin zero?

Regards.
Title: Re: Anemia without low iron
Post by: Andy Battaglia on January 12, 2012, 10:39:15 PM
A note about what the body does with iron during illness and this is quite relevant to discussions about anemia. First, let me mention that anemia of chronic disease (ACD) is the most common reason for anemia outside of blood loss. When infection is present in the body, iron is sequestered in the serum ferritin, so that it cannot be used by the infecting bacteria or viruses to grow. An example of this would be when after supplementing with iron, the iron stores in the body remain very low even though the ferritin may rise. The iron is actually being absorbed but the body is not allowing it to circulate freely, but instead produces more ferritin to hold the iron, keeping it unavailable to any invaders. So, in cases of ACD, supplementing with iron is fairly futile, as it won't be available to the body. The correct course is to find a cause of the ACD, rather than attacking the problem with iron, because if the iron is introduced, it can feed the infection. Also, because ACD can also be the result of some very serious illnesses like leukemia, it needs to be investigated fully.
Title: Re: Anemia without low iron
Post by: CatherineM on January 13, 2012, 03:09:57 AM
Hi Pretty

Treatment at moment for anemia, weight loss and stomach pain.

1. Constipation (as showed by x-ray) the whole colon is involved.    This will be fixed by the
preparation for colonoscopy early next month. (This is no cause of stomach pain or anemia)

2. Weight loss now taking a supplement which is mixed water.  The supplement is in addition to meals.

3. Anemia should be taking supplements but can cause problem with colonscopy.  Will look at restarting after colonscopy.  Also by then should result for alpha thal testing.

4. Dr following up blood test taking by hospital on 24 December.

5. She is also having a gastroscopy at the same time as colonscopy.  They are looking for bleeding.

6. Also from appointment with dietian.

Regards

Catherine
Title: Re: Anemia without low iron
Post by: Prets on January 13, 2012, 11:52:28 AM
All the best, hope they find a proper cause soon.

God Bless.
Title: Re: Anemia without low iron
Post by: CatherineM on January 13, 2012, 10:37:53 PM
Also started eating gluten again
 

Title: Re: Anemia without low iron
Post by: Dori on January 15, 2012, 09:52:18 AM
Does your daughter took lacto ferritin as iron supplement? I heard this is also another iron supplement called holo ferritin. Did you ever hear about that?
How went the colonscopy? Is she really intolerant for gluten? I am sorry there are still no decent answers regarding your daughter's health.
Title: Re: Anemia without low iron
Post by: CatherineM on January 15, 2012, 12:30:19 PM
The colonscopy/gastroscopy is not until 8 Feb.

She was taking ferro.

I don't know whether she intolence to gluten.  She is intolerant to lactose. Their is a diet being used in Australia for ibs called the FODmap diet.  This diet reduces the amount of wheat and rye eaten and other things.

I also tried the diet myself and by removing wheat and milk from my diet I have seem a major reduction in my heartburn so much so I no longer take medicine for heartburn.
Catherine

Title: Re: Anemia without low iron
Post by: CatherineM on January 21, 2012, 10:05:30 AM
Sarah's colonscopy/gastroscopy is now on Wednesday due to further weighloss.  If these tests do not anything, Sarah will have an urgent MRI.

My daughter's treatment in the last 6 months, shows the importance of get copies of all medical reports if possible.

Regards

Catherine
Title: Re: Anemia without low iron
Post by: Dori on January 21, 2012, 08:24:21 PM
I am so sorry to hear. Please keep us up to date and tell us when we can do something for you and your daughter. Hang in there and enjoy your days a bit untill scopy time.
Title: Re: Anemia without low iron
Post by: Andy Battaglia on January 21, 2012, 08:32:33 PM
Best wishes, Catherine. I hope they can find a cause. And thanks for the excellent advice about medical records. Too often, doctors operate in a vacuum and do not consult with other doctors who may have been involved previously. Patients and parents need to make sure the doctor is aware of all information that may have relevance. Patients and parents may not be able to connect the dots, but the doctor needs to be aware of anything that may have some bearing on the case.
Title: Re: Anemia without low iron
Post by: CatherineM on January 24, 2012, 05:54:21 AM
My middle girl Rachel test results have come back clear.  She is just short.  Interestly she has a bone age of 13 years.  Her actual age at testing was 14 years and 11months.  All three have had bone age testing showing growth plates that are between 18-24 months younger than actual age.
Title: Re: Anemia without low iron
Post by: CatherineM on January 25, 2012, 01:10:21 PM
Sarah has Crohns disease.  Just a  couple more test to rule something more severe.
Have restart iron today.

Catherine


Title: Re: Anemia without low iron
Post by: Dori on January 25, 2012, 09:33:59 PM
i am sorry to hear that is it Crohns. Could you please ask them to test her vit B12 levels? The few I know with Crohns and UC all have developed b12 deficiency. Maybe that too is causing her to feel so tired. If that is the case, ask for shots and not for pill form. Why restart iron?
Title: Re: Anemia without low iron
Post by: CatherineM on January 26, 2012, 08:30:10 AM
Dori

Sarah has ulceration of the ileum.  I can see the blood in the photos taken of ileum.  This is why the iron tablets have been restarted.

Still very new to all of this the colonoscopy/gastroscopy was only yesterday.

Sarah is having a MRI on Monday, to show how the disease extends.

Seeing dietian on Tuesday, and specialist will see us for a minute for biopsies results.

Full appointment with Specialist on Thursday for treatment plan.

School starts back on 3rd February and this stage Sarah is not well enough to attend.

Will ask about iron and vitimin B-12.

Regards

Catherine
Title: Re: Anemia without low iron
Post by: CatherineM on February 03, 2012, 05:28:53 AM
Hi Everyone

Now have confirmation of Crohn's disease.

Disease itself in showing as mild to moderate but she symptoms are considered severe so have started aggressive treatment with steriods. Doctors hope she will back on school next week. 

Was told first the time that she hemoglobin level is just above where transfusions would be considered at 93. 
This comment about transfusions by the specialist (Gastroenterologist) at below 90 would be of interest to you guys.

Catherine
Title: Re: Anemia without low iron
Post by: CatherineM on February 14, 2012, 11:21:13 AM
Sarah health has improved since starting treatment and is now back at school.  Her weight is now up to 45.5kgs
Title: Re: Anemia without low iron
Post by: Narendra on February 14, 2012, 02:11:50 PM
Glad to hear the treatment is going well and that she is back in school.
Title: Re: Anemia without low iron
Post by: CatherineM on February 23, 2012, 09:54:13 PM
Thanks Narendra

Sarah resumed swimming today, with a short session.  She is doing well.  Hemoglobin is still sitting at 90.

I wonder how all parents cope with all the blood tests and everything.

Sarah is currently have weekly blood tests with them taking a vital each time.  It hard supporting a 16 years old, when they miss and have try the other arm.  Must be so much worse with littles.

Catherine.
Title: Re: Anemia without low iron
Post by: CatherineM on March 01, 2012, 10:19:10 AM
Sarah's DNA - Haemoglobinapathy has come back showing no deletional mutations nor common non-deletional mutations of the a-globin genes as described

Although partner testing is still recommended.

Thanks for your support.
Title: Re: Anemia without low iron
Post by: Andy Battaglia on March 01, 2012, 07:22:45 PM
I hope Sarah does well, now that you finally have a better diagnosis.
Title: Re: Anemia without low iron
Post by: CatherineM on March 20, 2012, 07:12:43 AM
A quick update on Sarah.  She no longer has anemia her current hemoglobin level is 115 up from 90 in 6 weeks

Thanks everyone. Catherine
Title: Re: Anemia without low iron
Post by: Andy Battaglia on March 20, 2012, 03:58:36 PM
Very good to hear this. Do you attribute this to dietary changes?
Title: Re: Anemia without low iron
Post by: CatherineM on March 20, 2012, 10:10:12 PM
Sadly I can't say diet changes have help.  I believe it all down to medication treating the the underlining condition (crohn).  GI believe that she has had crohns for years and the condition had become chronic.

I do believe that Sarah had anemia of chronic disease (and thank for realising this).

There has being no improve in her iron studies, if anything they got worse.  Although they are hard to compare as our now being done by different lab.

I am posting studies for your information as my understanding was the that iron levels would improve before hemoglobin levels which has not happened in Sarah's case.

Ferritin 56 ug/L (15-165)
iron 2 umol/L (7-27)
transferrin 2.7 g/L (2.5-3.8)
transferrin sat 3 (13-47)

Comment
Low iron saturation may be seen in inflammatory disorders.



We ar
Title: Re: Anemia without low iron
Post by: CatherineM on March 20, 2012, 10:13:30 PM
Sorrry I had trouble with my post.

My last comment was going to be that.  Sarah's hemoglobin level in the highest it has been in 2 years and 9 months.  Maybe even long that this as this was the time of her first full blood testing.

Thanks for everything.
Title: Re: Anemia without low iron
Post by: CatherineM on May 17, 2012, 11:06:16 PM
When Sarah hemoglobin started to rise, she had also started to take a B Multi Vitamin and D3 with calcium.

Her vitamin D level tested 60.  Her is taking the supplement on her gi advice, gp does not believe the level is low.  Calcium is being taking due to the use of steriod.

GI said that calcium is better when combined with D3.  If the level of D is low the body finds it hard to use the calcium supplement.

Sarah continue to improve.
Title: Re: Anemia without low iron
Post by: Andy Battaglia on May 18, 2012, 02:05:57 PM
I'm happy to hear that Sarah continues to improve. Optimum D level is considered 50-80, so her level is good, and she is improving with her current regimen, so it would be wise to continue the D. So many people take calcium without D, making it mostly useless. Because the heartbeat is controlled by calcium and magnesium working together, I suggest using magnesium anytime calcium is used, as an imbalance can cause hear palps, when supplementing with calcium alone.
Title: Re: Anemia without low iron
Post by: CatherineM on July 11, 2014, 08:37:17 AM
Hi Guys

I haven't posted in ages.

Sarah has continued improve.   She is now in first year of university and working as a swimmer teacher.

Her Crohn's disease is remission.

A big thank to all you guys who were there in the dark times.

I try and give back the support you guys gave us on a Crohn's forum.

A child on that form has just been dx with anemia of chronic disease. 

Labs as follows:

Hemoglobin is 9.4 (again) (low)
Total iron is 149 (range is 40-175)
TIBC is 293 (range is 250-450)
% Saturation is 49 (range 15-50)
Ferritin is 183 (range is 10-154) (High)

Vitamin B-12 is 585 (range is 200-1100)
Folate is normal (no number)
And Vitamin D is 46 (range is 30-100)

The girl is half Indian.  She and her mother have tested negative for thalassemia.  Her uncle is a confirmed carrier.   The labs just don't look right for ACD.


Title: Re: Anemia without low iron
Post by: Andy Battaglia on July 11, 2014, 02:42:17 PM
CatherineM,

Is there a CBC available for the child? It would help greatly in diagnosing whether or not the child is a thal minor. ACD is not an easy diagnosis and not one that should automatically be assumed.
Title: Re: Anemia without low iron
Post by: CatherineM on July 11, 2014, 11:35:56 PM
Thanks for your reply.

So you think it possible that this child has thalassemia even although they have tested negative for thalassemia.

I have requested more information from the mother.

Thanks

Catherine
Title: Re: Anemia without low iron
Post by: CatherineM on July 12, 2014, 12:16:47 AM
Further update, just heard from the mother.

Dx of ACD how be withdrawn.

They are retesting for thalassemia minor  and some  haemolytic  anemias.

Mother mention there was a problem with the old testing for thalassemia.

Thanks

Catherine