I'm a middle aged guy 48 who has haemochromatosis and was recently diagnosed as folate deficient. I have to be honest and say I am worried and confused. I have symptoms that I simply can't define easily. Sometimes my whole body feels like it's having an allergic reaction, my throat is sore my legs are weak I have lightheaded turns that last for hours, I spit up blood, I get acid reflux or indigestion, I feel anxious like I'm about to lose it, I fear death is stalking me at times and everyone I try to explain it too thinks I'm mad. I feel totally lost, I have been taking folate as prescribed by doc 5mg tab a day, for 2 months now and things really don't seem to be getting hugely better. Are these normal symptoms . My doctor makes me feel like I'm a hypochondriac but I ain't making this up. Can anyone tell me if they felt similar and if so how long it took to improve. I really don't want to think this is the way I would spend the rest of my life. All opinions appreciated. Thanks
Feelong totally alone with Folate def... - Pernicious Anaemi...
Feelong totally alone with Folate deficiency
Firstly try and take one day at a time.You will improve.
1.Are you getting treatment for haemochromatosis ?
My friend has it and they draw blood .
2. Folate deficiency can give your above symptoms
3. 5mg folate can give side effects .usually short term then bloods rechecked
4. Was your b12 tested?
Vitamin D ?
Keep s copy of your results
5. The acid reflux could be low stomach acid.
Have you has a referral to gastro?
6. Have they tested for intrinsic factor antibodies . Picks up around 50% with PA
7. Keep a log of your symptoms
8. Try to eat little and often
Try a little juice ,some have lime .
Some find a prebiotic helps
9. Go back to Gp until listened to .
I had to go through all of them at the surgery.
10. Try and stay positive you will get help and improve
We've all been made to believe we are hypochondriac s at times.
You know your body.
Thanks that's a lot of info there. I honestly don't know the results of the blood tests other than I was told u needed to take folate. That was it no discussion no explanation just pick up a script. When I called to say this was not ideal and I felt so bad it seemed almost Impossible that all my symptoms were from this, I was told everything else came back clear and I should just take the folic acid. I might ask for a copy of test results to see what was actually checked. Thanks for the advice. I'm sick of feeling like this and I know I'm worrying my family so I want that to stop as soon as possible.
Do ask for a copy of your blood test results . You are entitled to it . Then you could let us see it ( no identification of yourself or doctor should be visible )
Your not alone but I would like to ask you is the blood spitting on awaking ? I have sjogrens and at times get this in the mornings and have awoken with blood on my pillow. What are you prescribed for your haemochromatosis ? Which I believe is a genetic autoimmune condition.
I have various autoimmune conditions and like yourself struggle with them. After a battle with one of my consultants I were prescribed hydroxycloroquine which helped with the flare ups and calmed the antibodies.
You are suffering from a condition that is known to make you feel weak and I can assure you are no hypocondriac. My heamatologist prescribed me folate which then masked my low B12. I were so weak I could hardly lift myself off the damned bed ! I could barely walk and when I did I were so off balance I crashed into walls and doors - it was awful. I too thought I were dieing and the depression was second to none.
Are you under a consultant ? You need someone who understands autoimmune conditions. Have you been checked for sjogrens ? ( dry mouth, dry eyes together with other complications. ) You need to explain to your ignorant Dr that your not a hypocondriac your diagnosed with a serious genetic condition and if he doesn't understand such a condition to kindly pass you onto somebody who does.
I fully understand what your going through and can sympathise with the brainfog.
Whats your B12 doing ? ? ? Jill
Thank you the haemo is just having blood taken every couple of months no meds required. The blood is mostly in the morning it seems. Thanks for the advice I will take it on board..
I dont know much about your condition I only new of it by talking to another patient whilst waiting to see the heamatologist. With regard to my B12 deficiency and suffering neurological symptoms ie: numbness in my limbs, cramping, pins and needles ect I decided to self inject and feel better for it.
Keep records of all your blood results and do get your B12 checked together with vit D then you can pop the results on here for further advice. Take in mind we are not medically trained but many have suffered and understand the wretched condition.
Dont suffer alone and if feeling anxcious somebody will always reply.
Not an expert, just been learning stuff as I go. Are you on a low iron diet, as in avoiding red meat? I have a friend with this condition and she often says.....I can't have that, too much iron in it. Secondly, I'm reading Dr Chandy's book ""Vitamin B-12 Deficiency in Clinical Practice." It goes into detail explaining that folate alone can mask a B-12 deficiency, as one person already said above. He pretty much said you have to take both. My own MD told me that methyl folate was to superior form and better absorbed. Folic acid is synthetic and causes problems in the system. The B-12 Society chart says to take a B complex daily that has at least 10 mg of B6, another important piece of the puzzle. Recommended amount of folate is 5 mg. Is anyone in the group taking this much? I'm slowly working up to it with great results. I hope this is helpful. You might try a sublingual B-12. I'm using Solgar brand between injections.
A diet that doesn't include red meat is not necessarily low in Iron. I don't eat red (or any other kind of meat) but my average iron intake is 3.5 times the RDA. Without any iron supplements. The difference is that this is all non-heme iron, whose absorption can be much better controlled by the body. It is less well absorbed though so you need 1.8 times the RDA, but getting that amount (or more) is not particularly difficult with a good diet.
10mg is quite a lot of B6, best to ensure the active form is used, for safety. You might not need this much if there is not a B6 deficiency. Most people don't need 5mg of folate in whatever form, thats the dose to treat a deficiency, not for long-term use (even if injecting EOD). If you don't get enough folate in your diet or have absorption issues, 200mcg-400mcg is a generally safe dose.
In the past month I've increased my B6 and folate to around 10 mg per day of B6 and 3 - 4 mg of folate. I had an immediate increase in energy and was able to delay my B-12 shot several days. I'm hoping to go 3 weeks between shots instead of 2 weeks. I've been on B-12 shots for many years.
Hi Technoid
Could you please PM me on how you get that much Iron in your diet, especially without any supplements as I struggle with Iron and things like Ferrous Fumarate give me severe cramps in my stomach, also severe constipation.
Would be much appreciated.
Thanks in advance.
Sorry to hear about your difficulties, I'm not sure about your health condition itself, however people who have stomach issues or have had numerous general anaesthetic are prone to having B12 problems, or those who take long term omeprazole or something similar, I've had long term stomach problems in the past, and I try to avoid taking these tablets even though I was advised to take them for the rest of my life, I'm now on B12 injections, and at one point I felt particularly unwell, I couldn't breathe and felt extremely light headed, I ended up needing folate tablets for 3 months to stabilise my general well-being, but getting back to my original point, B12 defiency causes numerous symptoms, pins and needles, muscle twitching, ulcers in the mouth, eye flickering and general fatigue, it's can cause damage to various other organs as well, many doctors DON'T understand how serious this condition is, and many surgeries are trying to enforce the cheaper and often more dangerous option of trying patients with the tablet version, it's a cost cutting exercise and many people will end up with serious side effects, the symptoms are classed as similar to neuropathy, and you can end up having numbness in your hands and feet, and are very difficult to reverse, if not impossible, tinnitus is also a classic symptom, the list is endless, don't be fobbed off, it's your HEALTH, I hope you get your health issues resolved soon, best of luck 🤗
Hi Milo,
I have Genetic Haemochromatosis and PA. Do you attend a haematology clinic? When I was first diagnosed with GH, I attended the clinic twice per year, now that I have it under control (by donating blood) I only attend once per year.
I found that the haematologist was far more understanding than my GP and actually listened to my concerns regarding my B12 deficiency and changed the frequency of my jabs from 12 weeks to 8 weeks. Perhaps you could contact your haematologist and share your concerns as your symptoms may be related to your haemochromatosis, possibly indirectly.
I had low folate a couple of years ago after a course of Omeprazole for acid reflux, the symptom I had was that nearly every muscle in my body was aching but mainly my legs.
I was convince it was related to my B12 levels but have to admit the course of 5mg folic acid tablets worked but the course of Omeprazole had also stopped around the same time.
Are you on any PPI's for your acid reflux?
yeah I’m the same with folate and ferritin deficiency. Are we b12 deficient aswell? I would say it’s highly likely and can we get meds for that? No !
Hi,
I'm sorry to hear that you feel alone, this is a supportive forum so I'm sure you'll feel welcome.
I think it might be helpful to look at your blood test results especially B12 result.
It's quite common on this forum to have both b12 and folate deficiencies. Iron and Vit D deficiency are also common.
I was told everything was normal in my blood test results and when I looked at them I found abnormal and borderline results on more than one occasion.
In a patient with both B12 and folate deficiencies, my understanding is that B12 treatment should be started first. Treating a folate deficiency without treating a co-existing B12 deficiency may lead to neurological symptoms.
Speaking from personal experience, it's possible to have severe B12 deficiency symptoms with a normal range serum B12 result. Some on this forum have Functional B12 deficiency, where there is plenty of B12 in the blood but it's not getting to where it's needed in the cells.
A few B12 links that may be useful. (Folate deficiency is also mentioned)
PAS (Pernicious Anaemia Society)
Based in Wales, UK. Has some overseas members.
pernicious-anaemia-society....
There is a helpline number that PAS members can ring and an online contact form.
PAS membership is separate to membership of this forum.
There are PAS support groups in UK and one in Chicago area, US.
B12 Info.com website (formerly B12 Deficiency Info)
Website lists sources of support
B12 Awareness (US website)
Stichting B12 Tekort (Dutch website with English articles)
stichtingb12tekort.nl/weten...
B12 Institute Netherlands
Has useful lists of symptoms and causes.
Two useful B12 books (folate deficiency is also mentioned)
"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper
Martyn Hooper is the former chair of PAS (Pernicious Anaemia Society).
"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (US authors)
Very comprehensive with lots of case studies.
Sally Pacholok is a US campaigner on B12 deficiency and has written some online articles about B12 deficiency.
It may be helpful to say which country you are in as this can help people to post relevant info.
I'm not medically trained just someone who suffered unrecognised and untreated b12 deficiency for many years.
Thank you I'm based in Scotland.
There is a charity called The B12 Society, based in Scotland.
Stomach Acid
Some people on this forum are diagnosed with high stomach acid on this forum and put on PPI drugs when they actually have low stomach acid. The symptoms are very similar.
Long term use of PPI drugs has been associated with low B12 levels in some studies.
This link mentions low stomach acid (hypochlorydia) and a simple test that can give a clue as to whether low stomach acid is an issue.
drmyhill.co.uk/wiki/Hypochl...
Low stomach acid can be a symptom of PA (Pernicious Anaemia).
Do you have symptoms consistent with B12 deficiency?
If yes to symptoms and you have a diet that is B12 rich (meat, dairy, eggs, fish, shellfish, foods fortified with B12) then the cause may be an absorption issue in the gut. I would expect your GP to at least test you for coeliac disease and PA, both auto immune conditions that can lead to B12 deficiency.
UK guidelines suggest that people who are symptomatic for B12 deficiency should be treated even if their serum B12 is within normal range.
Blog post about being symptomatic for B12 deficiency with a normal range serum B12 result.
b12deficiency.info/your-ser...
NICE CKS guidance B12 deficiency and Folate deficiency
cks.nice.org.uk/topics/anae...
Symptoms of B12 Deficiency (folate deficiency also mentioned)
pernicious-anaemia-society....
b12deficiency.info/signs-an...
cks.nice.org.uk/topics/anae...
b12-institute.nl/en/symptom... (from B12 Institute Netherlands)
Symptoms of Peripheral Neuropathy (damage to peripheral nerves)
nhs.uk/conditions/periphera...
Peripheral neuropathy can be associated with B12 deficiency and sometimes with folate deficiency.
Risk Factors for PA and B12 Deficiency
pernicious-anaemia-society....
b12deficiency.info/what-are...
b12deficiency.info/who-is-a...
Next link about causes is from a Dutch B12 website
b12-institute.nl/en/causes-...
There's a lot more UK B12 information I can post including some that is specific to Scotland.
Just let me know on this thread if you'd like me to post more.
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