For the past 6 weeks I have had awful dizziness, tingling feet, feeling spaced and almost consents tinnitus. It’s got so bad I’m having to go to bed for chunks of the day and when I’m up I don’t feel very present.
I’ve seen a neurologist, had an MRI and CT scan and a brain bleed was ruled out. The hospital also did these blood tests. Didn’t test my thyroid weirdly but did my iron and cholesterol. I’d be glad for some help with interrupting the results. I’m hoping to get a full thyroid test done. Think my cholesterol is ok but maybe the iron isn’t?
Could these results (low iron?) perhaps cause the symptoms I have? Sorry the ranges aren’t on the print out I received
I’m currently on 125mcg thyroxin and 12.5mcg T3. Take progesterone and oestrogen gel.
I’m getting a bit desperate for some answers so appreciate any thoughts you may have. 🙏🏼
UPDATE! 31/8 - Just had a really good consultation with my GP who is going to do all the tests everyone has suggested on here including a cortisol level test which I’ll have done tomorrow! Will post results. Thanks all
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janeroar
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I’ve been on it for a few years now. It started q dramatically 6/7 weeks ago in the middle of the night when the room started spinning. I am also very thirsty, literally drinking probably 5 litres of liquid a day.
It’s interesting that you’ve been stable on the T3 for a long time because all the symptoms you are describing, including the thirst, are very adrenal sounding to me - but I can be guilty of having cortisol goggles on sometimes. Can you ask for a 9am fasting cortisol? It should be in the top quarter of the range for that time of day ideally.
The ferritin is low, but I’ve definitely seen lower. Why isn’t your sodium/potassium result there? Did they not test it?
Did they do B12?
Your HbA1c is quite high, are you pre diabetic? Tingling feet and tinnitus might be related to high blood glucose.
Thanks I didn’t know that was high. I have a super healthy diet but I’ve felt my blood sugar levels could be fluctuating a lot. What test should I have done to make sure I’m not diabetic?
Well HbA1c is a good indicator of glucose metabolism, which looks quite poor in your case. You’d also want fasting insulin. If you buy some pee sticks from Boots you can test for glucose in the urine - are you peeing a lot more often? The thirst is indicative of BG issues.
Actually, call me crazy but I think that HBA1C might be low rather than high. It’s going to depend on the range—you don’t happen to have the lab ref range for that result, do you janeroar ?
Low blood sugar might be your problem rather than high blood sugar…
A normal HBA1C would be around 40-ish, assuming that the range is in line with what’s reported here: southtees.nhs.uk/resources/...
Oh Jazzw that seems more likely, altho symptoms sound possibly diabetic-esque? I always thought HbA1c range was something like 20-34, but I should have asked/checked! It says things about liver function online re. Low HbA1c, but it is my bedtime now so will have a look in the morning!
'Well HbA1c is a good indicator of glucose metabolism, which looks quite poor in your case'.
Apart from others comments regarding the range we need to be careful of HbA1c results in combination with low iron levels as iron mechanisms and haemoglobin risk becoming skewed.
I'm sorry jazz, but that site is crazy. A target of 42-53? That's eventually going to lead to diabetic complications. That's an old school style site that assumes people cannot take responsibility for their health.
34 is not too low and is likely trending in the direction of prediabetes.
However this to me sounds like low B12. Janeroar you can have functional b12 deficiency - where serum levels are fine or go up with supplements, but it's not getting into the cells & therefore not helping symptoms. I had to go on injections despite levels going into the 800-900s with b12 tablets.
Iron could be a notch higher but it's not too bad.
Thanks I’m going to check b12 too. I’m careful about my diet and don’t eat too much sugar but my sugar levels haven’t been right. I don’t know how I could be prediabetic though as don’t tick the usual boxes for warning signs. Is there a particular B12 test I should get?
Have you been supplementing b12 or a b complex? If so, best to stay off them for 4 months and retest, but that can be difficult for some.
To test for functional deficiency, MMA and homocysteine are usually tested, but doctors may be reluctant to test.
Intrinsic factor antibody and gastric parietal cell antibody are also useful but may come back negative about half the time in those that truly do have PA, so a negative result is not conclusive.
Is there any pernicious anemia in the family or relatives who get / got b12 injections?
I'd also followup on the cortisol test suggestions.
Have they tested MCV or RDW, or a full blood panel? If your red blood cells are off, that can distort the Hba1c reading. As can being hypo, but it looks like thyroid levels may be ok?
Forgot to ask, was that serum b12 test recent? If so, it's not worth retesting. There is also an Active B12 test but I doubt it will be low. Was folate tested?
Vit D?
If you get a hold of sodium/potassium results, that can help to see if cortisol may be a problem.
Hi Jade the b12 test result was from two years ago. It’s interesting what you say about your own experience of having good rest results but actually having a deficiency. I didn’t know about that before and it’s something I’m going to explore more. I actually started to take some b12/folate Biocare liquid supplement two days ago but maybe I should stop until I get a test done. Would it really skew it?
Vitamin D - I always have to supplement it, without it I get low. I’ve been supplementing through the year but stopped in the summer. I’ll get that tested too.
That level of 42 - 53 is considered to be the "ideal" level for people who have been diagnosed with diabetes.
The normal level for a person without diabetes is less than 42.
The NHS has never really got on board with the idea that diabetes and pre-diabetes can be put into remission. They just assume that a diabetic or pre-diabetic will have that condition for life. So they write their reference ranges from the point of view of the patients they see with diabetes.
Perhaps it's considered "too low" if you're diabetic (which also doesn't make sense but ok). In a normal world, 34 is absolutely not too low. What are the ranges on the test?
For example, my last one was
Hb A1c (IFCC) : 35 (20 - 42 mmol/mol)
Still too high for my taste. I get BG issues even at this level, and would love to get it down to below 31.
That’s interesting about wanting to get it lower though read a paper this afternoon which said that mortality rates for people with v low Hba1c are higher. Similar sort of pattern in people with v low cholesterol which isn’t good
Happy to stand corrected but again, I can’t help but wonder how much research has gone into so-called “normal”. I guess things have moved on but when I did my nursing training (admittedly more than 20 years ago now) we were taught that blood sugar was all about balance—about insulin moderating levels of blood glucose. It’s not a case of “the lower the better”, it’s about blood glucose being in the optimal place for bodily functions. You always need some blood sugar and for most healthy people it’s maintained within a fairly narrow range. The body makes its own if you don’t put any in. It bothers me a bit that the “normal” range is so wide (and dips as low as 20), because I’m not sure that could possibly be normal.
Anyway. Lower HBA1c is apparently correlated with Vit B12 deficiency, so that’s definitely something to look at.
I'm sorry Jazz, I didn't mean to be insulting or flippant, apologies if I was short. Yes 20 does seem a big low. But on the flipside -- all the endo's I've been to have waiting rooms full of people missing limbs and most in wheelchairs. I feel sorry for those people, left with obviously way too high blood sugars.
Indeed Hba1c can be distorted with B12 deficiency but I thought it was the other way around , that it can give a false high reading due to the enlarged RBCs.
No worries, I didn’t take it that way. 🙂 I was curious more than anything! I don’t think I’d ever seen a range for HBA1C before and naively I’d always thought of the result being roughly in line with what the results would be if you were to do repeated finger prick blood glucose test over a period of time. And if I’d repeatedly got a result where my blood glucose was low, I think I’d be concerned about that. But this might be about me not completely understanding what HBA1C measures and how it differs (I’ve googled, it didn’t help 😂 Most sites seem to be geared towards people trying to grapple with Type 2 diabetes and the explanation is dumbed down accordingly).
As for B12, I seem to have found evidence of both scenarios—that there can be B12 deficiencies linked to both high and low HBA1C. Low HBA1C seems linked to haemolytic anaemia and one of the features of haemolytic anaemia can be B12 deficiency.
Haemoglobin A1c (HbA1c), also known as glycated haemoglobin, is a longer term measure of glucose levels in your blood than a simple blood glucose test. Glucose attaches itself to the haemoglobin in your red blood cells, and as your cells live for around 12-16 weeks, it gives us a good indication of the average level of sugar in your blood over a 3 month period.
What might a low result mean?
A low HbA1c shows that you are currently not at risk of diabetes. However, it is important to monitor your HbA1c levels regularly so that you keep your blood sugar in the healthy range.
If you have already been diagnosed with diabetes and are taking medication, a low result means that you are controlling your condition.
HbA1c results can be artificially lowered by iron deficiency anaemia, and by haemoglobin problems such as sickle cell anaemia or thalassaemia. If you have one of these conditions then a fructosamine test can be used to check how your body is handling glucose.
What might a high result mean?
A high result can indicate pre-diabetes (a condition when blood sugar levels are high but not yet at diabetic levels) or full-blown diabetes. If you have already been diagnosed with diabetes and are taking medication, an elevated result can indicate that you are not adequately controlling your condition.
Being overweight or obese is the biggest risk factor for high blood sugar and diabetes. However, inactivity, certain ethnicities, and some conditions such as polycystic ovaries can also raise your risk of diabetes.
How might I improve my result?
For people with type 2 diabetes, the goal is to lower HbA1C levels to a healthier level. The good news is that pre-diabetes and even diabetes can be reversed through weight loss (calorie restriction), exercise and maintaining a healthy diet low in sugar and refined carbohydrates. In its later stages, type 2 diabetes may need management through medication.
There is a link between higher amounts of glucose in blood (as shown by Hba1c) and anemia caused by iron deficiency. Because your iron panel was low you can not assume Hba1c is correct without a FBC, eg RBC and haemoglobin results.
Ah, yes I don't think you can directly convert to an Hba1c, but there are ways to do it. Technically Hba1c is the "average" over 3 months so if you could get regular measurements in time, and then average them out, you'd get a similar result. Finger prick measurements don't really allow for that, because we don't usually measure when we're not eating. And you need to include those times too. Which is why the Libre Freestyle can estimate Hba1c - it measures continuously. Also my BG meter does also estimate hba1c, but the app requires quite a few measurements per day over a minimum number of days, before it will estimate Hba1c. Sorry I'm rambling but hope that helps.
Thanks for the 2nd bit of info. Will look into it, sitting here with a bit of a headache tonight.
peterattiamd.com/ama24/ Peter Attia on HBa1C. Interesting stuff. He’s a big fan of continuous glucose monitors. Would be good to hear from non diabetic folks here who have used one
I also thought 34 would be a good HbA1c result. Mine bounces between 40-43. I think somewhere around 42 might be pre diabetic and 48 is definitely diabetic.
thanks for your help. Yeah it’s horrible. You don’t appreciate even moderately good health with the usual gripes until you’re feeling completely floored! Feel better already for posting here as got some things to do and ideas about what could be going on. Thanks to this fantastic forum!
I’ve been looking at blood sugar related stuff today. Could your symptoms be related to high or low blood sugar? There is a star next to your HBa1c do you know what that means? Thirst often mentioned with blood sugar. 🌱
What do you call good? And are you talking about a serum test or an active test. Symptoms can suddenly happen sometimes. Or, they can creep up on you and you don't notice them until suddenly they become really bad. It all depends.
OK, so it could have dropped again, and be causing some of your symptoms. Not a good idea to stop for that long, best to continue taking a maintenance dose.
Strongly recommend you get FULL Thyroid and vitamin testing
Anything changed recently
Different brand levothyroxine or T3
Any different vitamin supplements
Had Covid recently
Etc etc
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
On T3 - day before test split T3 as 2 or 3 smaller doses spread through the day with last dose 8-12 hours before test
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
List of private testing options and money off codes
Covid in February. Made me q ill but seemed to recover. But maybe it’s triggered an auto immune over drive.
No change in brand. I did try a vitamin brand that had a high level of chromium in it and stopped it. I stopped all my supplements since then and slowly restarting again checking from any side effects because I have totally no idea what predicated all of this. That’s what makes it scary the not knowing.
Do you know how these iron scores are?
My last folate I had done a year or so ago was good but I was supplementing then and I haven’t for some time.
Will get a private test done I think as you suggest. Thanks again
Likely then that the covid has affected your B12 and folate levels, especially if you were prone to low levels anyway and had stopped supplementing. Did you ever work out why you were low, and how low were you? I already knew when I got covid that it could hit those and was supplementing anyway, but still started to crave meat (most unusual for me, as can't digest it anyway) so increased doses and am still slightly more symptomatic 15 months later, as are family members (long history of B12 metabolism failure/PA). May show in active test but more likely would need homocysteine/MMA. Best wishes
thanks for this. Can you explain what the Homocysteine /MMA is? And how I test for it?
No I’ve never worked out why my iron was low. Some people think it’s a protective factor weirdly, that too much iron can encourage growth of pathogens. I have toxoplasmosis as well so maybe that could be a factor.
Sorry, it was the low B12 that I was querying the cause of, not the iron.
Homocysteine and MMA (methylmalonic acid) you could think of as byproducts. If your folate cycle (B12, folate, other Bs and various other processes plus cofactors) is working cleanly and efficiently, you should not get a build up of either one. If it is not, you may get raised homocysteine or raised MMA or both, depends where the faults are. Difficult to get either tested, GPs don't seem to be able to, some possibility under consultants or can be private, although I've never done that so someone else may have better ideas. Adult Inherited Metabolic Diseases tested mine allegedly, although will not release the results....... As jade-s said, supplementing skews results and you may find anti-intrinsic factor antibody and anti-gastric parietal cell antibody testing helpful too. This one covers the lot, but as said, I haven't used them myself
I didn’t know anything about this before. Thanks if I can try and have that test done by a consultant that would be good. I’ve got private medical insurance luckily. What sort of specialist would be best to see? Neurology?
I'd see what your GPs tests come back as - you could ask them to do the intrinsic factor ab and parietal cell ab as they are doing a bunch anyway. I'd make sure they are testing magnesium too (if they haven't tested it already, I'm surprised that neuro didn't suggest trying a supplement). You could try a second neuro but no certainty that private will be of more use than NHS. Your symptoms do seem more neuro than gastro though (sometimes gastroenterologists are more clued up about B12 than neuros are, but not reliably). Might be worth getting a glucose monitor so you can keep an eye on your levels first thing (fasting), during the day and after eating.
I’ve been thinking about glucose monitor. Do you have one you can recommend? I’ve got my blood forms already so won’t be able to add more tests to them but will see what comes back and maybe get the others done you suggest. Thanks again for your help.
The only one I have any experience with is the Spirit Tee 2+ but I have been very happy with it, and very reasonably priced as a kit, then you can buy spare testing strips and lancets separately. Kit doesn't have many in it, but does include the lancet holder/pen shop.spirit-health.co.uk/co...
SlowDragon - a bit more advice if you can. I’ve spoken to my GP just now who has agreed to do all the tests tomorrow morning at 9am that have been suggested here. Hopefully T3, she said as well, although she was a bit doubtful whether she would be allowed to test for it. The problem is I have taken my T3 this morning as usual, I take 12.5 MCG every day. What do you suggest I do about taking T3 before the test tomorrow, presumably I’ve taken too much now given the test is only in the morning?
What you’re describing is exactly what I’ve been experiencing. I had Covid back in March, thought I’d recovered quite well - then boom all systems have gone weird!! My iron and Vit D were low, so commenced on medication. I’m now being investigated for Rheumatoid Arthritis due to severe pain in wrist/ankle/knee!! I’m convinced the off balance/spaced out/tingling feet etc is also to do with B12, however GP not listening. I’ve recently paid to see a Neurologist, who didn’t even look at my bloods and decided I had Functional Neurology Syndrome - which I know I haven’t got! 🤯
It sounds inflammatory whatever you have. It will be interesting to see whether going down the b12 route, even trying injections might help. Were your b12 levels low?
They were within range, but on the lower side. I also had low HB when they did a full blood count. Have they checked yours? My thyroid antibodies and TSH were all raised again too?!
Please see the info above from me & bookish, and below from debra_bill and the link to the pernicious anemia (PA) group. healthunlocked.com/pasoc Come join us there, you won't be the only one incorrectly diagnosed with FND.
So do you think it’s unlikely that these levels of iron will be causing the symptoms i have? Wondering if should take a supplement but I know it can be bad for you if you don’t need it.
Thanks yes it’s tricky to weigh up and decide what it could be. I feel more confident about doing that with the help I’m receiving here.
I eat lots of good food, very little rubbish. Almost no processed. Q a lot of red meat bearing in mind my iron gets low but I’ve found it very hard to raise through diet.
Do you take Vit C at the same time as eating food containing haem / other iron? As in OJ, lemon juice, peppers, rose hip tea etc. That aids absorption.
I would work my way through the Holland and Barrett iron dosing aisle, in your shoes, to see what works best for you. At the first hint of constipation / other gastric symptoms, start also taking food / gentle laxatives that will alleviate those symptoms. Even the gentle (so called) types like iron bisglycinate made me unwell but I know lots of people they work for. And there’s the one contained in sachets of water that’s also more gentle.
Am assuming you are pre-menopausal.. so far. If so, have docs looked at / considered your periods?
Someone put me onto buffered Vit C which works really well (recent test result) it's a slow release version so takes away the timing nonsense 🤗
Do you take any digestive enzymes or cider vinegar to help breakdown your meal.... I don't seem to extract a great deal from food though have recently added Tudca and it seems to be doing something perfect 💩😁
Ooh that’s a good tip. Which brand? I’m taking an eye wateringly expensive liposomal one (over a £1 a day!!) made by Altrient C. I used to think it was really good but I’m losing confidence in anything I’m taking because been feeling so awful!
I was taking Three Arrows daily which works for me within a couple of months but now take twice a week as my levels came up nicely, I still take the Vit C daily though it varies between once and twice a day... you know how it goes 🙃some days I actually eat oranges 😋
I don't eat red meat (high histamine) other than chicken liver pate
If you continue to have low-ish iron once you start supplementing and in general, ask docs to do a stool test to check for H Pylori and FIT. And perhaps do the DIY baking soda test for stomach acidity levels. There are previous posts here that you can look at to tell you why.
I dream of having ferritin levels as high as yours are - 50 and above is recommended and you are a whisker away - so I wouldn’t fixate on iron as the main issue here yet.
Interesting. How long had you had the IBS symptoms for?
H Pylori is a predictive factor - if untreated - for some kind of gastric / bowel cancers. Someone here will correct me if I’m wrong! Am glad that was picked up. I also had that, when my iron troubles started.
My GP (now my ex GP) had little to no interest in a result of 80 for my B12, she was more interested in blaming everything including global warming on my T3 habit!
After some research into what my levels should be and looking at a list of symptoms, I decided to self treat and I went to an aesthetic beautician, after checking credentials. They can't treat a deficiency (medical) but they can legally inject the same stuff to pep you up (vitamin supplementation!) Ludicrous, but true. What is wrong with this country?!
You don't have to have a blood test to prove low levels.
The oral B Complex supplement was sowly increasing my levels, but having no effect on symptoms. I couldn't take more because of the B6 content, so it would have taken an age to reverse the damage caused by the low B12. The 1st injection cured my twitchy feet within days, a 2nd injection cured my dizziness. As ever people have different results and recovery speeds.
I'm awaiting my own supply to self inject now. Perfectly legal, before anyone shouts at me. As the folks on the PA site tell me, you can't overdose on B12.
I don't know why my B12 was low, could be PA, could just be diet who knows. Don't forget you can have good B12 levels and still have a deficiency if your body can't utilise it.
I know a nurse who now does this vitamin supplementation role, replacing her arduous hospital nursing role with something that is quite basic for her to do but pays well and gives her more autonomy.
It’s unfortunate that they don’t have licences to do iron infusions though. The price of a commercial iron infusion is very steep - I can’t understand why. Does anyone know?
I suppose iron administered to a patient that doesn’t need it could v toxic so it’s probably good there’s some control over it. But a properly qualified nurse would be a good person you’d think to do it. Nurses are often better than a lot of consultants in my experience!
I had a reaction to my last iron infusion, but it was delayed. Symptoms were like having a bad flu for three days - hot / cold swings, weakness and fatigue.
When I tried to report it to the hospital I couldn’t get through on the numbers they gave me. So much for after care.
I think some practitioners like the late Ray Peat was v much against iron supplements, saying they fed pathogens. I don’t know enough about it to have an opinion about it though. Others here are much more expert on iron supplementation.
For those of us who have very low iron, I mean, and for whom dietary haem iron isn’t enough.
A hysterectomy?
As someone who is now past menopause, and who has been fat since puberty I was always assumed to have plenty of iron. It wasn't true and in my 50s I ended up being forced to test and treat myself.
The things that allowed me to do that were :
a) Discovering that the iron supplements doctors prescribed could be bought without prescription from pharmacies. I didn't need to beg and plead to get them.
b) Discovering that I could get an iron panel done without having to beg and plead, I just had to pay for it and didn't need to see a doctor.
If I had my time over again I would pay for an iron infusion to speed things up. Because I relied just on standard iron supplements and didn't absorb iron very well, it took me nearly two years supplementation at maximum dose to get my ferritin up to mid-range, and then five years of a maintenance dose before my serum iron and ferritin both started to rise. For many years my serum iron stayed really low. Once ferritin and serum iron started to rise I stopped taking iron completely. My iron panels fluctuated a lot after I stopped taking iron but have now settled down to being moderately good. I think I may have fixed a lifetime of iron deficiency - but it took seven years.
I do worry about iron and the risk it can cause cancer or encourage pathogens. But as someone who has always been short of iron I decided I just wanted to have enough iron for the first time in my life.
There is a section of his writing quoted here re: women and iron absorption that is just wrong.
He says women absorb three times as much iron from the same meal as men.
I don’t think that’s true and have seen no evidence to suggest it’s true.
If it was true then the RDA for women would be much lower and then the number of girls and women who are iron deficient would be lower than it is for men / equal to what it is for men.
Many more girls and women are iron deficient than men are.
If anyone can explain this away using common or garden medical knowledge I’d be very grateful.
He also says women lose “a little iron” when they menstruate.
Why would he need to diminish the fact that women lose iron every month? Iron that they need to replace.
I don’t lose a little iron. I lose shedloads of iron.
If you see the graph of my iron levels in my medical files - ferritin, say - it looks like a tennis ball going forward and back over a net, at speed, not like a straight constant line going from left to right. And that is despite iron supplementation and despite red meat eating.
Mansplaining is fine for men, but it’s not funny for women.
Too much free iron is not only toxic causing oxidative damage to cells but will feed a high pathogenic load. The ideal is to reduce pathogens, raise iron levels to encourage better function and use of safety mechanisms such as ferritin that raises in the presence of infection.
Low iron can cause anaemia and also discourage your thyroid hormone meds from working well. It is intricately connected to the immune system and high levels of chronic inflammation (as in Hashi) will further inhibit good iron function from impairing absorption, to transport and usage right through to the bone marrow making the RBC's.
It’s a v difficult balancing scenario that feels out of my reach of understanding especially in the thick of feeling ill. I’ve bought a good quality iron supplement but scared to take it! I should have my blood tests with FBC back in a week so hopefully that will give more information and clarity about supplementing. Thanks Radd.
Free iron = the iron found in the bloodstream that is not stored in ferritin. In an iron panel this is listed as "serum iron". And this is the iron that pathogens can use to help them reproduce.
The biggest problem with iron for most people is that doctors test ferritin and make decisions based on that.
But the patient might have high serum iron with low ferritin. When the patient starts supplementing iron it might be the serum iron which rises even higher leaving the ferritin almost unchanged. If only ferritin is tested the doctor and the patient won't know about the rising serum iron.
Or they could have low serum iron with high ferritin. Taking iron supplements might raise the ferritin further while leaving the serum iron very low.
This is why on this forum we always suggest getting an iron panel done so that undesirable things aren't happening in the background, completely unsuspected.
Free iron is not bound and can be determined (to an extent) by assessing the UIBC in the iron panel (unbound iron binding capacity).
It produces free radicals which are atoms that have at least one unpaired electron which steals another from elsewhere in the body, leaving that cell missing a part that creates free radical oxidative stress/damage. This is a normal part of ageing but too much free iron accelerates ageing and encourages changes in DNA.
Usually healthy iron mechanisms ensure higher absorption when more iron is needed and release from ferritin, and lower absorption when iron levels are adequate, with excess stored within ferritin.
However, Hashi sufferers are prone to chronic inflammation that plays havoc with iron mechanisms on multiple layers, such as distorting transporters levels that should match that of serum iron, impairing good bone marrow usage and the enterocytes in the intestinal that help absorb.
Once we have chronic inflammation, further pro-inflammatory cytokines will be released and you get into a vicious circle where iron mechanisms become further and further skewed. This is why is it important to try reducing the high immune response created by elevated thyroid antibodies. Many benefit from a gluten free diet and supplementing anti-oxidants that help reverse the oxidative stress (that is also inflammation).
Low ferritin levels are very common on the forum accompanied by all sorts of other lab variations, and some members fail to ever raise it. It is important to try raising iron slowly to allow the reversal of unwanted changes. If too much iron is taken onboard too quickly, you risk things such as transferrin molecules becoming too heavily saturated and losing their ability to tightly bind iron. Equally ferritin proteins, although larger can still become unstable & ineffective when overloaded and turn into hemosiderin, of which excess will settle in the organs and joints as in iron overload.
If you don’t mind, can you - or anyone else - please translate the below numbers so they make sense to me? Before I had my recent iron infusion, these were my iron results.
Iron binding capacity 72 (50-72)
Transferrin 9 % (20-50)
HB 114 (115-155)
Serum iron 6.2 (14-30)
Serum Ferritin 7 (13-150)
MCH and MCHC also both low
B12 481 (123-771)
Serum folate 12.3 (3-20)
Post recent infusion:
Transferrin 66%
HB 136
Serum iron 33.7
(I don’t have repeats for ferritin and some other results - they weren’t tested for)
Your results are a classic text book example of how one thing leads into another.
Dangerously low serum iron.
Iron binding capacity is full because you don't have many transferrin.
Low transferrin - these are the transporters that keep iron safely bound for transportation and in a 'healthy' state are influenced by the amount of serum iron. Hopefully yours are low because serum iron is low and not because of Hashi induced side effects of chronic inflammation known as anaemia of chronic disease. This is incredibly common on the forum, preventing members from ever raising their iron levels.
HB under range because you haven’t got enough iron, and MCH & MCHC naturally following suit.
Ferritin (storage protein) extremely low because there is no iron to store.
Vit B12 should be at least 500.
Folate is good.
After your transfusion you can see how much transferrin has increased to match the better levels of iron. This prevents iron from being free (which is bad) and will transport it to the right places, but it also eliminates the risk of anaemia of chronic disease. HB is slowly increasing as the positive effects of higher iron levels filter through the whole whole erythropoiesis process.
Having enough iron helps iron mechanisms to work more normally/effectively. Your goal now is to maintain these good iron levels that will help ensure future good iron utilisation. The forum often sees nutrient and iron deficiencies go hand-in-hand due to abysmal absorption but your nutrients aren't deficient. Are you supplementing?
You could be mindful about what helps absorb iron and what inhibits, eg orange juice v milk. Also increase heme iron (if not veggie) as it is absorbed much better. Try keeping inflammation to a minimum as this directly effects both ferritin and transferrin. Maybe go gluten free? Maybe try betaine + pepsin to increase chance of better absorption? A big contribution would be to optimise thyroid meds as a lack of thyroid hormones can both be the cause and the result of low iron. Have your iron always been low?
My iron has often been low. Or rather my periods have always been heavy but it only became a major problem just after Covid, when I started bruising really badly.
Ever since then I have been constantly supplementing but those supplements have made me feel v unwell along m with the permanent damage I alluded to above, which was caused by these supplements. Doctors now tell me I can take no more supplements at all.
I lucked into one privately funded infusion. A year later I then couldn’t get a second despite worsening results and symptoms of iron deficiency, and ever more heavy blood loss, over 6 months. As soon as I had the results I showed you above, I qualified for an NHS infusions and was given it within days. Now that I’ve had one they are making it very hard to get a second.
Thank you for explaining. I still don’t understand properly so will re-read!!
Do you have any guidance on who to speak to re: anaemia of chronic disease?
I have spoken to a haematologist on a few occasions - these last few years - and neither of the ones I spoke to ever mentioned it. In fact one said there is no link between thyroid probs and low iron. And he is a distinguished, very experienced doctor.
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and what debra-bill did is what i had to do too. 
Advice about aching arms - could it be thyroxine dose, D3 or iron related?
Low iron?
Could my thyroid really be the problem? 
Thriva test results, only half received
