I've been diagnosed with folate deficiency and iron deficiency anemia since 2019 despite oral supplementation,levels don't significantly rise.
Symptoms are
Restless Legs
Breathlessness
Wheezing
Headaches
Raised heart rate.
Severe back pain.
Weakness
Fatigue
Claudication in limbs and jaw
Tendonitis in multiple sites
Joint pain.
Muscle pain
Itchy skin and rashes particularly when cold.
Hands and feet swell and burn.
GERD.
Colonoscopy and endoscopy clear. No gynecological cause's for anemia.
My folate is now 1,3
HB 9
Ferritin 9
MCV 19
B12 sits at between 216-300 which Dr said is adequate
I also have raised platelets, plasma viscosity, monocytes and eseophinills.
Apart from an odd iron infusion,when my levels drop dangerously low, I'm under no consultant,no treatment,apart from supplements, which don't work.no monitoring and I just feel awful all the time l,just hoping someone might be able to help point me in a direction that might help.
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EllieMck
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Thanks for replying Nackapan my thyroid has been tested my TSH is high,but as everything else is normal they said no further action.
I do take folate and iron daily,it doesn't seem to do much.
Not currently having any tests, no referral to cardiology,they have just said my palpitations and raised heart rate will be due to the anemia, if I climb even a small flight of stairs walk on a slight incline ,my hear rate will go from about 65-70 ,to around 160+. They said no further action needed.
My diet is fairly healthy,in fact is probably better than ever as I've tried to increase the amount of folate and iron rich foods ,to try and help. Not aware they have considered ehler danlos of POTS.
Have asked for trial,of B12 they said no as I'm in range,no rest for PA or functional B12 deficiency either.
To be fair to my GP they have tried to refer me to both rheumatology and haematology,for further tests and investigations as they are a bit stumped,but referrals were rejected as no clinical need,this was during the height of COVID,But they won't refer again as they say nothing has changed.
I feel like I need to push for further investigation,I just don't know what they should be or who should be doing them. It seems like neither does my GP!! But have gone from being fairly active and healthy person,to a shell of my self ,with no end in sight.
Out of hours so a locum if not more than one at your surgery.
Your symptoms haven't changed.
They haven't gone away .
If they think it's anaemia then the cause shoukd be investigated.
I mentioned POTS as elevated heartbeat then drop can cause you to pass out .can be a complication of undiagnosed B12 deficiency..
I was initislly refused a referal to ENT but when symptoms of balance issues persisted got a telephone appointment which I found bizarre as no examination..
It was worthwhile as sent for ear pressure tests and a course of vestibula physiotherapy.
You are probably right in G.p not knowing.
Keep a log .
List 5 worst symptoms .
It seems like cardiology a good start to push for or haematology or both !!
Get more tests for B12 .
'In range ' can still be a problem if its not reaching cell level as a complex process .
It's exhausting to push for for tests, be persistent you know how you feel.
Hi, by 'everything else is normal' re. thyroid (high TSH) do you mean they have tested FT3, FT4 and antibodies (TG and TPO)?. If not, might be worth doing something like Medichecks advanced thyroid test, which will also give you a vit D and an active B12 test (which could be helpful info, but may not show a deficiency, just like a serum B12 can be anywhere in range and there still be a deficiency). The GP is wrong about B12 levels.
Not sure of your age - as you probably know absorption becomes harder over about 50 anyway. Oral iron can be very hard to absorb. Are you using folate or folic for your B9? I found that small to moderate doses of methyltetrahydrofolate made a significant difference over folic, which of course doesn't mean that it will do so for you, but I was also taking significant amounts of sublingual/oral/spray B12. There may be a slight problem with taking large amounts of folate/folic/folinic in the presence of an unidentified B12 issue. If private is an option, you could consider the Iron Clinic in Cambridge, which I think may be the best option for you.
Have you had a coeliac test? Again this often misses people who are coeliac and doesn't look for non-coeliac gluten sensitive, so doesn't rule out a problem but would be a sensible check to ask for if not done - assuming that you aren't already GF - if you are and with benefit please do not go back onto gluten to have any testing.
Your right I do need to push for them to do something,its hard fighting to be heard ,when you feel least able to advocate for yourself.
But I can't carry on like this,My GP seems to listen and understand,she just can't seem to get the referrals through ,we only have one GP surgery and for ones further afield you have to be in the catchment area for ,I have had 5 GPs in as many years as they keep leaving,so I think continuity of care doesn't help.
Back to the Dr I go! Will probably take till Christmas to actually get a face to face,so best to start the process sooner , rather than later!
Low iron may lead to red blood cells that are smaller than normal (microcytosis).
Low B12 (and/or low folate) may lead to red blood cells that are larger than normal (macrocytosis).
In a person with both low iron and low B12 (and/or low folate), the red blood cells may appear to be normal size on Full Blood Count with normal MCV because the effects of low B12 (and/or low folate) on the red blood cells may be masked by the effects of low iron.
MCV 19
Do you have a reference range for the above result (and your other results)?
As your MCV appears very low, I'm wondering if B12 deficiency is being masked by a severe iron deficiency.
Trying to understand results becomes very complicated in a person who has B12, folate and iron deficiencies.
Do you have a result for red blood cell distribution width (RDW)?
A raised RDW suggests a lot of variation in sizes of red blood cells which might suggest both microcytosis and macrocytosis is present.
Has your GP ordered a blood film (aka blood smear)?
This would show if there are both microcytic and macrocytic red blood cells.
B12 Deficiency Symptoms
Some of the symptoms you describe can be found on lists of B12 deficiency symptoms.
Link about what to do next if B12 deficiency suspected
2) "NICE CKS Anaemia - B12 and folate deficiency" published a few years ago.
There are differences in guidance between the two NICE documents.
3) "BSH Cobalamin and Folate guidelines" published in 2014.
4) Try to find the local B12 deficiency guideline used by your ICB (Integrated Care Board) in England (Health Board - Wales/Scotland) as your GP is likely to refer to this.
If you can't find it online, best bet is probably to submit a FOI (Freedom of Information) request to ICB or Health Board asking which B12 deficiency guidelines they use and for a link to or copy of the guideline.
PA (Pernicious Anaemia) and Coeliac disease
Have you been tested for PA (Pernicious Anaemia) and Coeliac disease?
PA
Lots of info about PA on PAS (Pernicious Anaemia Society) website.
There is sadly a lot of ignorance about B12 deficiency among some health professionals.
It's very hard to read and try to find answers when your head feels like it's full of cotton wool.
Neurological Damage
Have you been referred to a neurologist?
See "NICE CKS Anaemia - B12 and Folate deficiency" for info on referrals to specialists.
Speaking from personal experience, seeing specialists is no guarantee of better treatment or understanding of B12 deficiency.
See also "NICE guideline Suspected Neurological Conditions".
Neurological Damage
Delayed or inadequate treatment of B12 deficiency increases the risk of developing permanent neurological damage. In severe cases the spinal cord may be affected. This can sometimes happen in people whose serum B12 levels are normal range.
I started a forum thread this week about SACD, sub acute combined degeneration of the spinal cord recently which might be worth looking at.
In rare cases, severe folate deficiency can also affect spinal cord.
In a person with both B12 deficiency and folate deficiency, B12 treatment should be started first.
I think starting folate treatment without treating a co-existing B12 deficiency, means that normal sized red blood cells may be produced but the neurological effects of B12 deficiency could carry on.
I think a person receiving treatment for folate deficiency but not being treated for a co-existing B12 deficiency may have an increased risk of developing neurological damage.
More info on this in
"BNF folic acid"
"NICE CKS Anaemia - B12 and Folate Deficiency"
"BSH Cobalamin and Folate guidelines"
Your GP may discount the possibility of B12 deficiency if your serum B12 is within normal range.
Some forum members turn to self treatment if NHS treatment is not enough for them. Some get extra B12 injections privately, some try high dose oral B12 ( but this doesn't work for everyone - didn't for me) and some as a last resort try self injection (SI).
"when you feel least able to advocate for yourself."
Can you take someone supportive with you...even better if they've read about and have some understanding of b12 deficiency and other issues.
I found it useful to put concerns into short letters....it gave me time to plan out what I wanted to say. I struggled with face to face conversations due to brain fog. A letter should ensure that concerns are on record.
It's my understanding that letters to GP are supposed to be filed with medical notes...I usually included a request in letter to file a copy with my notes to make sure. Might also be worth sending a copy to practice manager.
Always keep copies of letters. Could be useful if there is a need to make a formal complaint.
Some GPs may not respond well to getting letters. Being an assertive patient may affect GP/patient relationship.
I always tried to be polite...in the end I gave up worrying I might upset GPs when I realised I was headed for permanent dementia and spinal damage if I didn't get treatment soon. I already had dementia symptoms and spinal symptoms at this point.
Have you considered recording appointments?
BMA (British Medical Association) have a useful article on this.
Search for "BMA recording consultations" to find it.
I mentioned advocacy services in thread about Patient Safety.
Thank you Sleepybunny for such an in depth reply,I will take my time and read through all the information. I really appreciate the time taken to reply.
In answer to a couple of questions:
My vitamin D has been tested it was 10 about year ago,told me to buy over the counter supplements and haven't/won't test again as that should fix it
Thyroid they have only tested TSH and I think T4 ,TSH was highly ,but T4 ok,they said it didn't warrant further testing.
My Dr would agree with you,they said having two different deficiencies in both iron and folate, complicate my results and she does feel they mask each other to a degree,my RDW is always way outside of range,she feels she out of her depth and feels haematology would be the best people to deal with it,and could be able to request a blood smear and additional testing they refuse to accept a referral and she doesn't know where to go next.
I don't know if speaking to PALs would help if I feel like the referral is needed?
I have been tested for Coeliac disease,unsure of what the test was exactly,they just said came back negative, I wasn't aware there was multiple things they could test for for Coeliac disease.
Apologies if I have not answered or missed any questions.
One thing I learnt from years of trying to find out what was wrong with me was to always access blood test results. If your GP surgery said everything was normal, please check for yourself. Look for trends in the results over a period of years.
What's increasing?
What's decreasing?
I was told everything was normal more than once then found abnormal and borderline results when I accessed them.
Patients Association have a useful page on accessing medical records.
"My Dr would agree with you,they said having two different deficiencies in both iron and folate, complicate my results and she does feel they mask each other to a degree"
I think it's vital that your GP considers the possibility of B12 deficiency even if your serum (total) b12 is within range.
Are you currently on folate treatment?
If so what strength and for how long have you been on it?
Does your GP know that treating folate deficiency without treating a co-existing B12 deficiency can potentially lead to neurological damage/spinal damage. She can find the info in her BNF book - entry on folic acid.
Might be worth you searching for "BNF folic acid" online and reading it yourself.
See documents below for more info.
"NICE CKS Anaemia - B12 and Folate deficiency"
"BSH Cobalamin and Folate guidelines"
Try to find any local guidelines used by your ICB/Health Board on folate deficiency/B12 deficiency/iron deficiency/macrocytic anaemia/microcytic anaemia.
Maybe you could ask her
1) if it's possible to have B12 deficiency symptoms with normal range serum B12.
If she says it's not possible, maybe show her the article below about a patient who had damage to spinal cord from B12 deficiency even though serum B12 was normal range.
Search for "PubMed Turner SACD functional B12 deficiency" to find article.
2) if it's possible that you could have functional B12 deficiency...and have some info to hand if you do in case she's not sure what it is.
If GP thinks functional B12 deficiency is possible, I would expect her to at least order an Active B12 test (holotranscobalamin). Even better if an MMA and homocysteine test are also ordered but may need to see a specialist to get those.
A person may have a normal or even above range serum B12 result but still experience deficiency. B12 in the body can be split into Active B12 which the body can use and inactive B12 which the body cannot use.
If a lot of B12 in the blood (serum) is inactive then the person may develop deficiency symptoms.
I'm not a scientist or health professional so please check my explanation.
"Thyroid they have only tested TSH and I think T4 ,TSH was highly ,but T4 ok,they said it didn't warrant further testing."
Might be worth posting about thyroid results on Thyroid UK forum along with an outline of your story. It's helpful to have the actual numbers. Take care to remove any details that might identify you or health professionals eg names, addresses, ID numbers etc. It's important to protect privacy.
"I don't know if speaking to PALs would help if I feel like the referral is needed?"
I didn't find PALS very helpful but that's just my experience.
I sometimes put requests for referrals into a short polite letter to GP along with evidence that supported request eg symptoms list, test results, quotes from relevant UK health documents.
Thread on Patient Safety may have other useful info. Link in one of my other replies.
"I wasn't aware there was multiple things they could test for for Coeliac disease"
When you have the energy, spend some time on Coeliac UK website.
Coeliac UK have a good helpline.
Put "helpline" in search box on Coeliac UK website to find the number.
I think non-members can use it but not sure.
Coeliac UK have an online assessment for coeliac disease, maybe you could look at this.
Some forum members find their way to a diagnosis of PA or B12 deficiency via other health professionals. Maybe you could ask other health professionals if you have any signs consistent with B12 deficiency.
An optometrist might spot changes to optic nerve.
Have you had an eye test recently?
A dentist might spot some of the following ...
sore spots at side of mouth
sore red inflamed tongue
pie crust or crenated tongue (looks like little bite marks around edge)
mouth ulcers
bleeding gums
splits in tongue.
A podiatrist (chiropodist) may spot signs of neuropathy (nerve damage)
An audiologist might diagnose tinnitus.
I was once told that in UK, some podiatrists are able to prescribe B12 injections but not sure if this still happens.
If another health professional does spot signs of B12 deficiency maybe you could ask them to write to GP.
B12 deficiency can lead to damage to the myelin layer around nerves.
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High Folate with PA terrible GP
Confused & could do with some advice please...
Confused and not sure what to do next?
Unsure what to do next
