Had to wait weeks to get blood test and then weeks to get results and then told Iron levels are fine when not even tested ! I have posted the results…..How do they know iron levels are fine from these results ???
She is 21 and has heavy blood loss every month along with other symptoms, if anyone could help or advice on what to do.
She has fainted a couple of times, luckily had no injuries. She has stomach cramps, a lot of pain in back of legs (back of thighs and calves), constant nausea, loss of appetite, extreme fatigue, feels very weak, looks very pale, tingling and numbness in hands arms and can be in legs sometimes. She’s lost a lot of weight.
Had a lot of problem just to get a blood test and finally after weeks of blood test managed to get a phone appointment with GP as they don’t come in to surgery and don’t see patients face to face ?
GP said everything is fine with blood results and when my daughter asked how her iron levels are, GP said iron levels are fine.
The B12 and Folate levels are there and Vitamin D it says not tested as last done in June 2021. I don’t know if any other tests are needed.
She is really affected by all this and I don’t know how to help her. It affects her daily life and she’s studying in her last year of University struggling due to this.
Any help would be appreciated.
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Ryaan
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I know from granddaughter that stresses of university life, eg. exams, away from home and friends, fitting in, socialising, etc. can be overwhelming - stress, over exercising, inadequate diet, alcohol, etc. all have a detrimental effect on B12 levels.
Personally, it wasn’t until I wrote to GP, setting out symptoms with links to BMJ research document, etc. and had a copy of, “Vitamin B12 Deficiency in Clinical Practice”, by Dr J. Chandy, sent to the surgery that I was taken seriously and offered tests.
Many helpful links and advice here on the forum.
I hope you and your daughter find answers soon, Ryaan.
Letters avoid face to face confrontation with GP and allow patient time to express their concerns effectively.
Best to keep letters as brief, to the point and polite as possible. It's harder to ignore a letter in my opinion.
Keep copies of any letters sent or received.
Self treatment
Some UK forum members turn to self treatment as a last resort.
Has your daughter looked into this if she's exhausted all chances of getting treatment from NHS?
wedgewood has posted some helpful threads and replies about this.
Some forum members access B12 injections from beauty salons in UK and some from private GPs. There is high street chain of chemists that offer a B12 injection service, not sure what their criteria are for giving injections. It's not Boots.
Some people manage their condition with high dose oral B12 although some report this as ineffective...might be worth a try. It didn't work for me.
I hope her university is being supportive.
I can't comment on actual blood results as eyesight too dodgy these days even with new glasses.
Maybe if you have time later, you could type some of them out in separate post.
Should be something useful in links below.
Links to forum threads where I left detailed replies with lots of B12 deficiency info eg causes and symptoms, more UK B12 documents, B12 books, B12 websites and B12 articles and a few hints on dealing with unhelpful GPs.
Some links may have details that could be upsetting.
Her red blood cells are on the lower end. Has she tried anything to help with her heavy periods such as Tranexamic acid tablets. Or contraception. She could try some iron tablets see if it helps orB vitamins
Yes she has been given Tranexamic acid tablets and experiences a lot of side effects. She does take Iron supplement tablets and has taken B12 oral which help to a certain extent.
Her levels of B12 do raise with 5000iu tablets so I’m not sure if she needs injections.
I SI B12 myself for the last 5 years and learnt a lot thanks to the people on this forum, they’ve been really helpful but since this is a women’s health problem I don’t know much about it.
Thanks for pointing out the red blood cells are on lower end.
Yes but anything you take or do will effect your body and how you are. Does not mean that there is a right or wrong, it’s down to the individual and what they want and they feel.
The assumption from these results would be that there's no suggestion of iron deficiency from the FBC. Her haemoglobin level is normal; her MCV and MCH are normal.
The 'heavy periods' reported are clearly troubling, and that's a common cause of iron deficiency. However, at this stage there's no suggestion of it, and 'heavy periods' can be difficult to assess.
Unless there's evidence of deficiency, then self-treatment with iron is unwise. Iron in excess is seriously toxic, and does kill.
The results you post show a lymphocytosis, and the blood film shows atypical lymphocytes. The GP will see lots of these, especially in students.
I know it's hard to accept, but it's definitely a case of listening to the GP, as they have more info and training.
Thankyou FlipperTD. Thanks for pointing out these things as I have no idea with blood results apart from the obvious.
The GP unfortunately is of very little help, they are currently working from home and only offer telephone appointments after many weeks. No face to face appointments, I don’t know if that’s the case with other GP’s.
I have been thinking of changing GP as they are always like this.
I think they should have tested Iron/Ferritin levels as they know the problem for many months but missed it out, even with a couple of episodes of passing out, but Iron level remains unknown. It would have helped to know.
But you’ve answered one of my main questions on how the GP knows the iron levels are fine without testing Iron or Ferritin levels. I assume from your answer that it’s by looking at FBC, MCV and MCH (I will have to google what these are) I only know what FBC stands for.
The 'normal' MCV [Red Cell mean cell volume] generally is in the 80s and 90s. Beginning with a '7'it's low, and at 100 and above, it's high. The MCH [Red Cell mean cell haemoglobin] is the average amount of haemoglobin per red cell. Simply, (Hb/RBC) and is a reliable indicator. In iron deficiency, there is a problem making haemoglobin, but red cell production carries on. Smaller red cells are produced, and they have less haemoglobin in them. Not only that, but the percentage of haemoglobin falls. (MCHC= Mean cell haemoglobin, Hb/Hct) MCHC is normally around 32-35ish, but in iron deficiency can be much lower. With iron replacement, these values return to normal after a few weeks; it takes about four months for the old red cells to be replaced. So, as you can see, if the MCH and MCV are normal, then florid iron deficiency is unlikely, but they can't tell us quite how 'close to the edge' we are. Ferritin is useful, but not infallible as it rises in inflammation.
GPs [like the rest of us] have been having a challenging time, but they're still there to care for us. I can't stress strongly enough the dangers surrounding self-selecting for iron replacement. Excess iron is stored in the body, and once the 'normal' storage systems are full, then the body carries on storing more and more, and can affect all sorts of other systems, leading to chronic iron overload. Acute iron overload can be fatal. It's not that common nowadays, but still happens.
Your daughters folate level is only just in range but b12 looks okay. Has she had any previous blood tests done to show if her levels have been dropping? If they have I would get back to your GP to discuss these and ask for a trial of b12 injections and folate supplements to see if they help relieve her symptoms. She could try taking a supermarket strength folic acid tablet daily to increase her folate level and also b12 in tablet or sublingual form to see if it helps.
She isn't iron anaemic at the moment but as someone has already suggested taking a contraceptive pill should help with heavy periods if this continues to be a problem.
Last blood test was last year, the B12 hasn’t dropped but she has supplemented with B12 5000iu tablets and levels did rise so I guess she can absorb it. The Folate is borderline, perhaps GP should have given 5mg Folic Acid for a while but haven’t been able to talk to GP yet.
She is in range on folate, on the lower end and doubt if dr. Would give you prescription, I would either buy normal folate or you could try a multivitamin and mineral from chemist or shop !
Testing iron has to be done under certain circumstances:
1) If taking iron supplements, stop taking them for a week before testing.
2) If taking biotin either alone or in a combined supplement stop any source of supplemented biotin for a week before test.
3) Fast (except for water which should be drunk freely - don't want the patient to be dehydrated, but don't drink so much they are waterlogged) for 12 hours before the test, and before breakfast or other pills and supplements.
4) Do the test at roughly 7am - 9am before breakfast.
5) Collect and post the blood sample(s) on a Monday or Tuesday, preferably with "Guaranteed Next day delivery by 1pm" (You have to take the parcel to a post office for this.) Don't use delivery by 9am, it costs a fortune and may be delivered before lab staff have arrived. Check with the Post Office you use to find out when latest time is for the parcel to be posted.
6) If you want help with interpretation of the results (which will be found with the account used to order the test) you can ask on the Thyroid UK forum on HealthUnlocked, although nobody on that forum can be assumed to be a doctor.
Also, I agree with FlipperTD that the doctor has relied on the FBC to decide whether or not there is evidence of iron deficiency. In my experience I haven't found the FBC to be hugely useful for iron deficiency. I once had under-range serum iron, very low in range ferritin (iron stores), very low in range Haemoglobin, bottom of range Red Blood Cell Count, a ferritin level that dropped every time it was measured - and doctors still wouldn't prescribe iron supplements until I'd had five consecutive ferritin results over 3.5 years that got lower every time.
In the end I treated my own iron. It took nearly 2 years to get ferritin to mid-range and serum iron was still low. But unless you know what you are doing I wouldn't suggest anyone supplements iron. It is poisonous in overdose. Note that men usually improve their iron much more quickly than a woman would.
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