Apologies for what will probably be a long post...
Recently I've been feeling pretty hypo (crap) - the usual stuff, fatigue, knackered all the time, low mood, no interest in things, hair falling out, but also with a few worsening symptoms - including cognitive decline, and by that I mean like short memory, feeling spaced out, can't concentrate at all and the thing that is getting to me is that it's starting to noticeably affect my work.
I'm positive for Hashi's and I had a routine thyroid and blood panel yesterday and while they only did TSH (standard) my bloods came back a bit odd and now I'm more confused than ever.
(Note I followed all the usual advice - the test was at 8am, 24hrs before my 100mg levo, no biotin 2 weeks before). TSH came out at 0.86 mu/L (0.2 - 4.0) - although that is not what I'm discussing in this post, just fyi.
Context: I've been supplementing iron since 2021 having been borderline anaemic with really low serum ferritin levels in 2021 ie. 17 ug/L, then 24, then 32 all (10.0 - 291.0) so after so much hard work, it slowly crept up. I'm also an avid meat eater with a varied diet.
The test I had yesterday didn't include serum ferritin owing to a shortage of reagent? (whatever), but other parts of my haematics tests came back as abnormal:
Transferrin saturation Index 52% (<40.0) Outside reference range / abnormal
To me, both of the above suggests my iron now looks too high (which would have been laughable 2 years ago) but the results have prompted them to give me a phone consultation (date tbc)...
In addition to this they also tested a few other things including my Red Blood Cell count which came back as pretty low: 3.85 (10*12L (3.8 - 5.0).
So, on the one hand it looks like I have iron saturation, and on the other hand possible anaemia / vitamin B12 or B9 deficiency anaemia??
I checked back over my previous labs, and I've consistently had a low red blood cell count - around the same results 3.8 (10*12L (3.8 - 5.0) each time for about 1.5yrs. The same can be said for my Mean Cell Haemoglobin level. My last B12 test was a year ago and was 480ng/L (211-911), and 510 before that, then 422 back in 2021(same ranges).
Do others agree that it is probably B12 that is the issue? the symptoms do match up - cognitive decline especially. Or could there be obvious other things going on here that I've missed?
NB. I'll ask my GP for a B12 test when they eventually get in touch, will see how that goes. But in the meantime I'm a bit worries about taking B12 supplements in case they somehow impact / increase my iron further - is that a possibility at all?
Thanks as always everyone,
Eb
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My mother had P.A. for several years with regular injections but she developed stomach cancer due to having her B12 injections stopped as her GP told her she needed no more B12 injections.
My sister and I thought that was a 'good but it caused her to die prematurely.
I also have P.A. but GP is good and has told me I can have as many injection I feel I need instead of aquarterly.
Hiya shaws I finally got around to looking over all my test results and no - no test for PA. Well, certainly not for Intrinsic factor antibodies, just for B12 which has always hovered around 470 - 510. So, IFAB and folate (is that all need?) is next on my list.
I think I might have been thinking all this time that I still have low iron (when actually that improved after supplementing) as the symptoms I've been feeling are similar (breathlessness, anxiety, hair falling out etc) and it might have been B12 all along. Or both :/
For reference, what is a optimum B12 level for someone with hashi's? if it turns out I don't have PA but just need to supplement for some reason (I'm a meat eater) I'll try sublinguals.
To me, both of the above suggests my iron now looks too high (which would have been laughable 2 years ago)
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My last B12 test was a year ago and was 480ng/L (211-911), and 510 before that, then 422 back in 2021(same ranges)
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The high iron results could simply be caused by too much supplementation. I am not clear on what your timeline is.
If I've understood things properly...
You had low ferritin so you supplemented iron. What did you supplement with? What dose did you take? And how many times per day/week did you take iron?
Some things to be aware of :
1) Ferritin (iron stores) and serum iron can be both "normal", both high, both low, or one can be high while the other is low. Different patterns of results tell you different things about your health.
2) If someone takes iron supplements the iron could end up going into serum iron or ferritin or both. It is important to know where it is going. Please read this...
3) The speed at which people can absorb iron while supplementing varies tremendously which is why it is important to get iron panels tested fairly often, particularly at the start of supplementing. If absorption turns out to be very slow then frequency of testing can be reduced. Some people can fix an iron deficiency in 6 months, some might take a year or two, and some might never manage to absorb enough to optimise anything and would need to get an iron infusion.
4) Levels of folate can affect how well the body absorbs iron. The best form of folate supplement (when required) is methylfolate which is easily sourced from Amazon, Ebay, and other supplement sites. Avoid folic acid for reasons given in these links :
Methylfolate is a "methyl donor". Too few methyl donors can cause all sorts of health problems, including messing up iron absorption and altering the balance between ferritin and serum iron. There are other supplements that are possible methyl donors besides methylfolate.
Problems with methyl donors can reduce or stop conversion of folic acid into folate, which is why taking folic acid isn't recommended, but methylfolate is.
Methylation is a complicated subject that I hate trying to write about because I don't know enough about it, and I shouldn't be trusted on the subject either.
humanbean Hiya, sorry for the delay. Yes you are about right, originally on my hashis diagnosis my iron was terrible (expected maybe). and I worked on getting that sorted wile also getting my levo dose up to where it is today 100mg. I went GF and took probiotics / got fermenting - no idea if either has made a difference as this all happened while my levo was being adjusted.
What did I take an when?
Well, I started on feladix - the liquid stuff. I had maybe 2 bottles over about 6 months and nothing happened (I now know that is too low a dose). I upped offal meats too eating liver, kidneys and making bone broth. I then got ferrous fumarate 210mg prescribed in Jan 2022 and took loads of those (2-3 a day) at the start for a good month then after 2 boxes, a couple a week up until I got tested and my ferritin was at 44ng/ml (10 - 291). I was disappointed by this... and for what, all those horrible black poos!
I decided to take a different approach and independently bought some stearate, and started taking these one every other day about 4 months ago. I did this for about a month, and then reduced it right down to only a few a month ie. during my period, and just after. Which is what i was doing when my labs came back as above, - tbh I was quite surprised! but obviously I responded well to the stearate compared. (But yes ferritin was not included in last week's labs 'owing to reagent shortage' - so now I need to ask for this again to get a true picture). Of course, have held back on all supps for now, as, all being well, I'll be in for tests again soon enough.
Having looked over my labs from the last few years I've not had serum folate taken for a while, but in 2021 is was really high - 14.8 ug/L (3.0 - 14.4), then 14.1 n/ml (3.0 - 14.4), then 11.3 ug/L (3.0 - 14.4) and then by Oct 22: 12 ug/L (3.0 - 14.4). So folate has moved around a bit, but was always high before.
I've never had - that I can see, Intrinsic Factor AB tested. I'll be pushing for this, or paying for it online if necessary.
Understood re. Methylfolate, that is really helpful, I have read good things about this product, what do you think?
Obviously I wont take anything until I have had bent the GP's ear about doing some further tests as I know B12 supps, along with biotin and others mess them up.
They only did TSH last week, 0.36 miu/L (0.2 - 4), but my last NHS tested full thyroid labs were: TSH 0.38 miu/L (0.2 - 4) 4. conversion 74%, T4 20.6 pmol/l (11.0 - 22.6) conversion 82.76% and T3 4.4 pmol/L (3.5 - 6.5) conversion 30%. - I did however accidently take my levo that day at 3am, test was at 8am (I forgot to cancel my alarm, so I have since regarded these last labs as not being entirely consistent). Annoying.
Might be worth mentioning my TPO's have always been super high. As in off the chart 1,300> kU/L (0 -60).
I've tried to cover all your questions here, but yeah, I was hoping I'd made some progress, but this recent iron issue and all the horrible symptoms has put me on a right downer, as it looks like other things are now out of whack.
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