So I’ve found a doctor who thinks I’d benefit from an iron infusion followed by b12 injections and some autoimmune testing to try and understand what’s going on w my vitamin levels and try to rule out pernicious anemia.
It would be private so obvs come at a cost but wondered if it were you would you go for it?
I’m think I just gonna go for it…it can’t hurt surely…
I’m wondering if it may actually help my thyroid med intolerance too possibly?
I don't know much about it other than I read the other day that the NHS policy in my area is that B12 deficiency should be resolved before an iron infusion is given, looked up after a conversation with a friend who insisted she'd had 6 iron injections and no B12 though B12 was below range 🫤.... She'd had 6 B12 injections and no iron though ferritin at 40
Oh that’s interesting because I’d been told the opposite. That low iron means that adding in b12 won’t work effectively and can exacerbate low iron symptoms! I defo noticed when I tried adding b12 the last week my restless legs have been unbearably awful and is keeping me awake at night.
Also that correcting low iron/ferritin can increase b12 a bit? 🤔
I’m thinking I might go for it in the hopes of feeling better faster 😬
No they are old. The newest set are attached. I take magnesium at night but it hasn’t had any impact on restless legs…only thing that seems to help right now is stopping b12😬
How much magnesium do you take they usually give you the elemental content which is often much lower than the capsule weight
e.g. A capsule contains 400 mg of the compound Magnesium Glycinate. The literal amount of elemental Magnesium itself which is out of that compound is 60mg. (Meaning the remaining 340mg is the (glycine) amino acid.
Bisglycinate is about 14% elemental magnesium so your 2 capsules is only about 112mg and you can take upto 350mg RDA so you might want to try doubling or trebling your dose
B12 deficiency is often caused by a condition which is commonly called pernicious anemia. The name kind of implies or suggests iron deficiency- but it has nothing to do with iron. In general terms iron deficiency and b12 deficiency are separate conditions - so iron infusions won't help b12 deficiency nor will b12 treatments won't relieve iron deficiency.
That’s interesting and not what I was advised on the Pernicuous Anemia forum. B12 works together with othe co factors and an important one is iron. I was told it is common for low iron and b12 to occur together in PA.
My Dr also said that b12 will not work effectively without suitable iron levels.
I’m aware they are two separate things but also aware that one impacts the other.
The NICE guidelines suggest treating b12 deficiency and then checking that other deficiencies aren't being masked such as iron and folate.
However, if two deficiencies are known to be present it would seem reasonable to treat both. However, in the case of b12 and folate deficiency it is generally recommended to treat the b12 first and then the folate. The reason given is in connection with some reports of neurological issues with treating folate first, albeit there is some debate about the matter.
It would be interesting to know which is the correct sequence for b12 and iron deficiency and the reason for it.
Thank you. I’m currently taking three arrows and have taken it in the past with great results. However I find when I add in b12 my low iron symptoms worse and the restless legs are awful and keep me awake at night.
It improves when I stop b12 so maybe o should take iron only for a bit and then add b12? 🤔
However I find when I add in b12 my low iron symptoms worse and the restless legs are awful and keep me awake at night.
I haven't come across this problem before, as far as I can remember.
Have you been tested for Pernicious Anaemia?
Your level of B12 is far too low for good health. Please note the serum/Total B12 test is a poor one and you get more useful info from an Active B12 test.
Apart from poor absorption/Pernicious Anaemia, there are other causes of B12 deficiency that I know nothing about, but may be relevant to you. I wouldn't know how to get a diagnosis or what patients could do about it :
The body needs good levels of folate in order to make use of your B12 - but it is essential to get B12 levels above the bottom of the range before supplementing folate. It is quite common for people to have problems maintaining their levels of folate at an optimal level, and as a result they have to supplement frequently.
Your level of folate is too low. I try to keep my own level at about 20 nmol/L. I always use methylfolate as a folate supplement and avoid folic acid like the plague. A lot of articles refer to folate and folic acid as if they are the same thing, but they aren't. Folic Acid was first developed in 1943 - it isn't something that humans evolved to use.
If you can get an iron infusion, in your shoes I would go with it. As someone who struggled to absorb iron, it took me seven years to raise both my ferritin and my serum iron with tablets. Now I know more about raising iron I would have gone for an iron infusion rather than stick with iron supplements.
Regarding the order in which to supplement these things :
1) Always supplement B12 for a couple of weeks before adding in folate.
2) I had to improve my iron and ferritin a lot to stop my restless legs and leg cramps. Magnesium helped me a little bit, as did vitamin D.
3) For what it's worth my mother was prescribed quinine for her restless legs. I've never taken it myself and it is NOT harmless. But my mother was old when she was prescribed quinine and the risk of toxicity was probably considered unimportant. It might be worth drinking a glass of tonic water as an experiment before bed, but if you tried it I wouldn't try it for very long!
3) Could you get your B12 up quite high before adding in some form of iron? Would that be feasible?
Or the reverse? Try improving your iron first before adding in B12? I think this might be a dangerous thing to do and shouldn't be considered because severe low B12 could end up creating this problem :
It is methylcobolamin I take and have taken in the past too. I actually had horrific restless legs taking this the other year too but thought it was my thyroid meds causing it!
-I had read that increasing b12 first will lower iron and I’ve read a few anecdotal stories of this online.
- The doctor I am seeing has advised an iron infusion first and then b12 injections, he said that doing b12 first will not work because b12 needs iron to work effectively and adding b12 first can deplete iron further.
I actually found in ‘23 before I found three arrows iron, when supplementing b12 my entire iron panel plummeted to the lowest it’s ever been so I wonder if this is the case for me!
Thank you for the order of which to take supps! I had started folate too so perhaps this is what’s aggravating restless legs?🤔
I’ll drop it for now and just stick with b12, iron, vitd+k and magnesium!
This may be a red herring to your problems but my Restless leg stuff if completely caused by Aspartame - the sweetener they use far too much these days. I do take magnesium but accidentally having something with Aspartame in it sets me off terribly. Not so long ago I cycled to a pub with a friend and we had a G &T. I simply could NOT sit still so went to the barman and asked - sure enough he had served us both slimline tonic! However almost all tonic including YOU know who's - has aspartame in it. How can they call it "original" with aspartame in it? Fever Tree tonics are fine. It may not apply to you but thought it worth mentioning.
Also I have not been tested for PA- I think the dr I’ve enquired with is keen to do that but also trial b12 injections to see if it helps me?
My very limited understanding is PA is he’s to diagnose BUT looking at the symptoms I have loads of them tbh and have done for a few years.
I’ve also have a permanent numb spot of the side of my big toe for just over 2 years and am now wondering if this is due to b12?🤔 (no dr was bothered so I just put up with it) I also have intermittent numbness and tingling in my feet/hands/fingers/toes and also fore arms and lower legs but it all comes and goes and varies in severity so just put it down to thyroid possibly?
I did all the physio, compression garments, supports and braces the other year and it made no difference at all…🤔🤔🤔
I am not aware that neuropathy is an issue particularly associated with thyroid disease but I could be wrong - the number of symptoms for thyroid disease is enormous. You might find this thread of interest :
Thank you for the links will sit down and have a thorough read through in a bit!
It’s a bit of an odd one for me as I’m not convinced I’m typically hypothyroid (no antibodies, normal scan) my TSH is often raised but other times normal…my t4 and t3 (free) are always normal and pretty well through range. Thyroid meds also cause severe hormone imbalance in other areas (low testosterone, high prolactin, high SHBG, undetectable dopamine)levels all of which are completely normal when I’m not taking the medication. The higher the thyroid med dose the worse and more an abnormal my results become. This was established over 18 months of taking thyroid meds at varying doseages and combinations.
I have informed my endocrinologist of all of this and they don’t know. There only solution is to take no medication 🙃
My husband was diagnosed with low iron after an operation on his liver. Before he could take any supplements he was admitted to hospital with a chest infection. On asking if, while he was there, he could have an infusion of iron we were told no because there is a danger of an anaphylactic shock.
Old iron infusion preparations used to carry a higher risk of anaphylactic shock - the new ones they use now such as Ferinject have a very low risk. If this happened recently that information was incorrect and in fact iron infusion is routinely given to pre-op patients with low ferritin as it improves post-op outcomes.
There is always a risk of anaphylactic shock with iron infusions. This is why doctors are so reluctant to refer patients for them. But I don't know what percentage of patients actually suffer from this problem (and I would love to know what that percentage is), and I wonder whether the risk is massively overblown to put off patients, and/or to make nurses and doctors lives easier, and/or to save money.
There should always be a medical professional (nurse or doctor) in the vicinity if someone has an iron infusion. And that costs money.
I just found this paper on adverse reactions to iron infusion - there are quite a few more such reports available. The risk of anaphylaxis is very low.
Severe adverse events were exceedingly rare with only 2 documented epinephrine administrations, both associated with iron dextran.
But if the alternative is to just use tablets then the patient's life might be adversely affected for many years like mine was. I had below range serum iron and bottom of range ferritin at one time (11 or 12 years ago). When I found out I could buy my own prescription-strength iron supplements without a prescription and could pay for iron panels privately without involving doctors I started treating myself. It took me nearly two years just to get my ferritin to mid-range, but my serum iron stayed extremely low. I took a maintenance dose of iron for five years to maintain my ferritin at mid-range. And then my serum iron started to rise. Not long after that I stopped supplementing iron and now my levels drop much more slowly than they used to. If I knew at the start of treating myself what I know now I would have paid for an iron infusion rather than take iron tablets for so long.
I think it’s just that some medics aren’t up to speed with the fact that newer preparations are safer. My OH says it’s about 1 in 1000 with Ferinject - our daughter is about to get an infusion and we’ve made sure the clinic can deal with a reaction if it occurs.
really I think it is a matter of trying the injections to see if they help. There is a pernicious anemia forum in health unlocked that might be a better place to post your question re iron and b12 they will have some expertise re this.
Oh okay thank you! I made a post there yesterday too and had some useful replies. I know thyroid and pa can occur together so figured I’d ask here too!
I’m amazed there is no concrete test for PA at all. …makes it easier for NHS to ignore it and not diagnose!
There was a test - the Schilling test. But due to BSE the essential component required to perform it became unavailable. This is worldwide - not just UK.
It was expensive, took diligent lab staff to perform properly, and if not done absolutely right, could produce "wrong" results.
It is not that everyone is happy with this state of the art. But no-one has produced a satisfactory test. There is the CobaSorb test - but I don't think that has reached the UK yet. Have a read of the link below:
Very interesting and a shame there isn’t a definitive test as b12 is so important!!
I’ve felt ‘anemia’ type symptoms for over a decade (thyroid was normal until the last 2 years) but doctors usually only checked my ferritin and told me it was fine. B12 issues were not considered at all which is frustrating.
I would definitely go for iron infusion if funds allow - the clinician (depending on what specialist they are) might be able to advise on whether to treat this or the low B12 first but it may not matter.
I had v similar results to you and went for iron infusion - it was the best money I’ve spent in a long time. I didn’t get B12 injections as I’m allergic to cobalt but that’s another story.
RLS is awful and I sympathise- my husband is a major sufferer and I reckon it’s genetic as his Mum is same. His bloods are all normal and he’s never really got to the bottom of the cause or cure (the only treatment the NHS seems to offer for it is pretty serious stuff - I think it’s a Parkinson’s drug)
I would recommend Doterra Life Long Vitality Supplements. (LLV) They have been a successful supplementation regime for many people including me, not only for thyroid and RLS but for inflammatory arthritis and other autoimmune and autoinflammatory diseases.it gives the body all the nutrients needed to bring the body into balance. With RLS there is often a lack of magnesium but it is better to give all nutrients, not just one in isolation - they work together for healing.
LLV contain wholefood nutrients including all the trace minerals, omegas and therapeutic grade essential oils to enhance absorption.
Hope you find a solution that gets you back on track xx
Hello GreenTealSeal, I would add a note of caution about an Iron Infusion. It is still possible even with the newer preparations for patients to have an anaphalactic shock. I guess that is the reason Nhs want to patch test you? Is the doctor you initially mentioned in your post looking to undertake the iron infusion?
I don't know if you are still looking to fund the iron infusion yourself or the Nhs are funding but a local private hospital would most likely agree. The cost in my area for a private consultation for a Haematologist to recommend it is at least £250 for the one consultation and £800 for the iron infusion at the local private hospital. I just wondered if you'd investigated this in your area. You would probably need quite a number of recent blood tests and if those were carried out at the private hospital could cost hundreds of pounds. I have investigated this for myself and was surprised at the cost, so not just being negative to you.
I do appreciate your frustration in struggling to raise your iron levels because I have had this problem for a very long time too but do be careful as your original doctor seemed to be tackling a number of problems at one time when one at a time is usually more helpful to confirm whether or not the problem was as suggested. More than one intervention at a time and nobody will know which one was useful/accurate. Do check the Pernicious Anaemia site about B12 deficiency and Pernicious Anaemia diagnosis too. Good luck.
Thank you for your reply. I’m aware of the costs and have been given a price for all this which is something I can afford. I also have recent bloods, and plenty of them from the last 2 years.
The patch testing is not related to any of the issues I have listed here. I was referred for it because of my thyroid medication intolerance (this is the case even when ferritin is good!) I doubt it will show anything at all and seems a bizarre decision imo but happy to go if nhs think it’s needed.
The dr I saw did propose to tackle one thing at a time…iron infusion first, then followed by b12 injection trial. Also autoimmune testing for PA. The dr that has proposed this is private and NHS are doing patch testing because I respond so poorly to thyroid medications. NHS can’t be bothered to help me or connect the dots in anyway. I can’t tolerate thyroid medication and they don’t believe me or my symptoms.
I have checked the PA site and tick an awful lot of the symptoms there.
Great that you have already investigated so much of this already. Most doctors would undertake B12 testing before prescribing B12 medication in order to obtain accurate results with the tests.
To iron infusion or not the iron infusion … that is the question!
For me, the two reasons that I don’t pursue 1) despite the slowness of supplements, my iron & saturation is optimal and my ferritin has increased from about 5 to 35 this past year. I have begun to think that an optimal iron profile (even with low ferritin) supplies our cellular iron needs. I totally get there tons more to say about that ….
But also 2) because excess iron accumulates over our lifetime, even for big fans of iron infusions I think (?) most would caution to not do too many in one’s life and wait as many years as possible between if you decide to do more than one anyway.
I love reading posts here from people who are iron infusion fans.
But the more I learn about serum iron and saturation percent… and perhaps looking at ferritin as a proxy overall… me personally I’m still on the fence.
The above is not entirely a methodical argument for or against.
My recent ferritin - 488 ug/L (General: 30 - 400).
Being a male, this seems to be accepted almost without comment despite being significantly over top of range. And previous tests have been in the same direction (though not quite this high). I suspect there are huge numbers of us who have likely had high ferritin for at least most of our lives. With how much accumulation?
I wonder how that compares with a few iron infusions (of, say, 50 milligrams) over the years to keep levels from being seriously low?
How is your serum iron and trans sat %? It’s those in excess that are harmful.
Did you have a full iron panel with those ferritin results? High ferritin on its own isn’t the issue, as there are other reasons other than excess iron that it goes high.
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