My daughters suffering weakness,fatigue ,mental fog, very emotional, pain in hips lower back, ankles, she can't concentrate has memory problems. Eczema shortness of breath, heavy periods after them stopping altogether. All her tests were so say normal and the ones that were out of range told nothing to worry about. This is the results of her test last Jan15
TSH. 0.05. (0.2-5.5)
T4 18 (10-24.5)
Ferritin 13 (10-300)
Folate 4.2 (4.>u)
B12 395 (180-1000)
Alkaline phosphatase 95 ( 130- 340) should be 3 times adult ranges in children.
Saw endroconologist may 15 as I have graves and she said all the blood tests were ok
When I questioned ferritin folate and phosphorus she said that her iron was a little low and recomended GP to prescribe some iron tablets . She also said if she didn't improve to go back to Gp and get refferal to Bath hospital for ME as this would help if she had a diagnosis for school . She has app at Dr tomorrow with new blood test results , I'm at a loss as she she so poorly my other daughter was diagnosed with ME at 14 SHES 19 and still poorly I have had total thyroid removed due to graves and still battling to make myself feel well after 14 years ago. Please advise on what we should say tomorrow Inorder to get some help. Many thanks
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Kellogs
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Sorry forgot to mention my daughter is 14 yrs now, she has been on vitamin b12 sublingual 1000 mg spray since dec14 and zinc vit c vit d magnesium and for a short time nutri adrenal as suggested by Dr Peatfield .
Your daughter could be gluten intolerant. All of those symptoms she suffers from can be caused by gluten, especially ezcema, chronic fatigue, mental fog etc. Of course she might also be B12 deficient. I would request a tissue transglutiminase test IgA and IgG from your doctor. Gluten causes over 300 different symptoms and ailments so might be worth checking out.
Folate is bottom of range which could impact on ability to absorb and use B12
B12 is grey area so B12 is a possibility - should be assessed on basis of symptoms as test results in these range are not reliable. - but quite possible that doctor won't be aware of this or even what symptoms to look for - beyond anaemia - and that is not necessarily be one of the first problems to materialise.
B12 could also be a factor in relation to your other daughter - ME is a frequent misdiagnosis as there is a large overlap of symptoms
LadyNZ Thankyou for your reply. I know we can't rule out B12 deficiencey but think that as she has low ferritin and folate then surely it would make sense for the GP to follow it up, but it's getting them to listen and I can't get them to understand how unwell she feels and how much her life is affected by this, a year has passed and were no further forward, she is supposed to be sitting her GCSEs next year. I don't want them to diagnose her with ME and just forget her like my other daughter.
Gambit62 Thankyou for your reply. I have mentioned her folate before and was told that it was not a problem which I know is but how can I get them to follow this up and what other test would I have to ask them to do. It's so hard when you are told that there levels are in range and just say we will repeat blood tests again in a few months, how long can they keep doing that. I'm seeing a different Dr at the surgery tomorrow that practises alternative medicine so hopefully we may get some results.
ideally B9 (folate) should be upper half of range if there are folate problems.
Sorry that doctors are so poor on this - seem to be poor on so many things.
Low folate could be indicative of an MTHFR problem - will try and attach link to an introduction on this from a different machine as don't have it book marked on here.
Unfortunately sometimes you just have to decide to go it alone - more possible with B12 than things like thyroid and diabetes - and sometimes that can be the most liberating decision you make in your life.
Gambit62 Thankyou so much I will go it alone if no joy at Dr's tomorrow and we have done before, I just didn't realise that folate and ferritin was needed for B12 uptake so even though we have self medicated with sublingual spray you have to know all the facts in order to get the results. I may well be asking for your knowledge on these subjects in the not to distant future. Many thanks .
Have either of your daughters ever had an IFA test/ Intrinsic factor Antibody test?
This can help diagnose PA (Pernicious anaemia) .
There are other tests to help diagnose B12 deficiency eg MMA, Homocysteine, Active B12, Blood film aka blood smear. As your daughter is taking b12 supplements it may be very hard to get reliable test results as they will be probably be affected by the supplements. The test mentioned above can be obtained privately.
At the level you mention it is possible to have severe deficiency symptoms although B12 blood level is in range.
This is a lengthy document but well worth reading in my opinion. I found page 29, a diagnosis flowchart useful. There is a summary of this in the PAS website library section. Although the NHS should be following this document (it came out in 2014) sadly some GPs and consultants are not aware of it.
Books
Could it Be B12 by sally pacholok
Pernicious Anaemia; The forgotten Disease by Martyn Hooper
Living with Pernicious Anaemia by Martyn Hooper
As Gambit mentions ME/CFS is a common misdiagnosis of PA or B12 deficiency.
Martyn Hooper, the chair of the PAS talked about this on his blog recently. Questions have also been asked in parliament by Countess Mar on this issue. She is a campaigner on behalf of people with ME/CFS. It is possible to contact her theyworkforyou.com/
Sleepybunny thankyou for your very helpful info. I did consider letting Dr refer her in a moment of (fog mode) but my other daughter never benefited from it and knowing what I know now my youngest daughter will not have to suffer time-wasted due to lack of knowledge on all relevance linked to this complicated medical deficiencey we all suffer at some point,
Hi Kellogs. I really understand where you are coming from with all of this. My eldest was diagnosed with ME at 16 and is now 25 and unable to function normally. Now her sister of 22 is having problems with B12. I have hashimotos and self treat. Doctors tend to label patients and can't see past that label. It is so frustrating. I hope you are able to get the help you need soon.
Hi. Her ferritin is way too low I think, though I haven't yet checked the charts for her age. If she were an adult woman a ferritin that low would produce extreme tiredness, memory problems etc. It is all the more worrying because she is adolescent, and this a period of exceptional need for iron. There is some research showing that low iron in adolescence may lead to permanent problems, so you are right to take it very seriously. Has she started her periods?
If she can raise her ferritin over 60 she may feel better and think more clearly. Personally I would avoid any referral for ME until her ferritin is in a good range and you know what lies at the bottom of the liver problems. Possible liver problems, a raised white cell count, a raised neutrophil count... it all sounds like a physical problem, doesn't it?
My experience is also that once there is any kind of psychiatric diagnosis you can't get any help on physical problems. Maybe apart from a broken leg, but even there I would not be surprised to be met in A&E by a psychologist talking about mindfulness.
Have you posted in the Thyroid forum as well? You might find a member with Graves who saw a similar set of results in her child, and would have an insight.
I put my son on two tabs of Gentle Iron from Solgar - 20 each, from memory, with Ferrochel. I would avoid Ferrous Sulphate, which is probably what your GP has prescribed, and personally I would start on a low dose and work up slowly.
• in reply to
PS, when I put my son on two tabs of Gentle Iron he was 17, 11 stone and 6' 2" so basically physically an adult. I'd start much lower with a waif like 14 year old.
is the US site on iron supps which may be helpful.
Sorry to go on.
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Just re-read your post, she has heavy periods, that's a clearr picture then, the reason for the low ferritin, and the need for constant supplementation. It will probably be the reason for her low concentration.
We were on our way to the Dr's when they phoned and cancelled our appointments. I have managed to get my daughter in this afternoon with another Dr, I asked for a print out of her tests and will have to collect later. They gave me one sheet from the results which said her ferritin had improved to 24 it was 13 last dec . It also said her folate is low and to see GP. Last test was 4.2 ref(4->) so this means it must be outside lab ref range now .hoping that when I go back to gp later he will now be able to treat with b12 as guild lines state. Thankyou all for your advice so far, I cried with relief that I'm not on my own and you have given me the info I need to fight this case . 💜
Dr prescribed 5mg folic acid and said B12 was ok I did tell him she was having B12 spray . He said it was rare to see a child with low folate and low ferritin together. I said how slow her iron levels were rising and wanted to test for magnesium, tissue transplants glutaminase.creatinine,electrolytes,eg fr. He thought low iron and slow absorption could be down to celiac disease . Total ruled out B12 when I told him all her symptoms he asked how I felt about a refueral to Bath hospital for ME, I said you don't want to know how I really feel about that. He said he didn't blame me for not wanting her to go. I then came home to look at blood tests results i collected from reception earlier. I Wil phone PAS tomorrow as I can't think what to do first.
Well, it's good he's going to exclude celiac. That's a start.
Here's a quote from a published document on iron deficiency (ID) re ferritin:
"Serum ferritin, in the absence of inflammation (usually defined as a normal C-reactive protein level), reflects total body iron deposits. Thus, a low serum ferritin (< 30 ng/L) unequivocally means ID, whether accompanied by anemia or not. "
So that's her, unequivocal iron deficiency - this comes from this study which you might find worth a read.
World J Gastroenterol. Oct 7, 2009; 15(37): 4638–4643.
Published online Oct 7, 2009. doi: 10.3748/wjg.15.4638
PMCID: PMC2754511
A guide to diagnosis of iron deficiency and iron deficiency anemia in digestive diseases.
Note: , "ID with or without anemia should always be investigated because it can be caused by potentially serious diseases[1]. "
They must investigate.
• in reply to
And, from the same doc, just to put it on the record in this forum, after celiac he should check for h pylori, and if he refuses to test for autoimmune/atrophic gastritis, you can do that privately of course.
"Reduced iron absorption is the second category of ID causes of digestive origin, and can be caused by celiac disease, atrophic gastritis..... aamong others. Celiac disease is very relevant and specific evaluation to exclude it must be performed. In a study on patients referred to a specialized gastroenterological consultation because of ID or IDA, celiac disease was finally the diagnosis in 10% of cases[8]; other authors described that at least 2%-3% of patients with IDA are finally diagnosed as celiac disease[3,6]. The prevalence of this disease worldwide is approximately 1%, and it is probably under diagnosed[9]. Microscopic alterations in the duodenal mucosa in non-treated celiac disease patients will lead to them becoming refractory to oral iron treatment. BUT NOTE This has also been described in patients with autoimmune atrophic gastritis and gastritis due to Helicobacter pylori (H pylori)[10-12]. Gastroscopy with biopsies, allowing us to detect the presence of atrophy with or without H pylori, is essential. The positivity of autoantibodies (anti-intrinsic factor or anti-parietal cell) supports the diagnosis of autoimmune atrophic gastritis[13]. Regarding the possible role of H pylori in IDA, a recent meta-analysis indicated that the infection is associated with depleted iron deposits. The mechanism by which H pylori induces this alteration is not clear, but it appears to involve gastrointestinal blood loss, diminished iron absorption from the diet, and increased consumption of iron by the bacteria. "
The main reason for ID in young women is heavy periods, but then the question is - what is the reason for the heavy periods?
I agree Aspmama but many areas of the UK have ferritin reference ranges that start at 10ng/ml (sometimes given as ug/L). There is a young person I know who has both ferritin and folate at the bottom of range, midrange b12 and the Gps will not treat.
Forgot to add that reference ranges for children vary from those for adults and some parents may need to check that the correct reference range is being used for their children. The age at which children are treated as adults for blood test results varies between areas of the UK and between different blood tests.
It may be possible to find children's haematological (blood) reference ranges by doing a search on local area NHS website. Another way is to submit an FOI request. Details of how to do this are on local NHS area website
Sleepy bunny when we first went to GPs her periods had actually stopped for 2 mths her ferritin was 13 and folate4.2 and they said her bloods were ok . that's why I medicated her she had also lost a lot of weight .
Weight loss is another symptom of B12 def. and your daughter's levels don't seem that high considering she was supplementing with a spray. At that age, there are many reasons why she may be deficient and growth spurts would increase demand on her body.
My vegetarian sister was misdiagnosed with ME for years and eventually, after serious neurological problems, referred to an ME clinic, which she refused. It turned out to be severe B12 def. (B12 levels over 1000 with supplementation) and she made a good recovery after ongoing monthly B12 injections.
Martyn Hooper of the PAS spoke in the House of Lords this year about probably thousands of people with PA/B12def. misdiagnosed with ME/CFS.
The ranges are not evidence based to exclude iron depletion. They are meant to exclude anaemia, (possibly... probably not) but they do not exclude low iron short of anaemia which is in itself damaging in childhood.
In addition, the ranges are based on a very wide sample which includes sick people at both ends, and they are also hugely flawed in their approach to women, since no attempt was made to take into account periods or to exclude women with very low iron intakes.
Gives some references for this which might be helpful.
The labs should adjust automatically for the age of the person whose sample is being tested. However remember that the ranges for all kinds of "scientific" measures can be based on very rough averages, and that this is particularly important to remember when dealing with girls around puberty.
It's a privilege if it helps. I always fear OCD overcoming me!
One last thing, heavy periods and hypo can overlap according to this guy. And if the TSH test isn't reliable for hypo in its early stage, as many think then it will not be picked up.
I would still check those thyroid levels - as mentioned by someone else. When Iron and Folate etc. are LOW - then the performance of thyroid hormones are affected. I had my grandson tested whilst here in Crete on holiday - Ferritin - Folate - below range - yikes. Thyroid looked just OK. So now at 17 we have a baseline just in case it is needed in the future.....
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could someone check my test results please to explain them to me?
Blood test results help please! B12 Folate Ferritin
