You guys know so much so I'm hoping for your take on what's going on with me. Any advice on what I should do going forward i.e. getting B12 injections from GP when I'm "in range".
Doctors found some demyelination on my brain MRI. Immediately the doctor said MS (probably). This was without any bloodwork and a cursory physical exam. Since then another docter has said MS again with NO bloodwork. Dismissed the B12 level.
I managed to get a GP to carry out tests for Hughes as my syptoms overlapped.
I paid for blood tests to get a better picture of my health and get to the bottom of the 'MS'. I'm getting parietal cell and intrinsic factor antibodies checked also.
My results:
Active B12 (holotranscobalamin) 148.000 pmol/L [37.50 - 188.00]
Folate 19.98 ug/L [3.89 - 26.80]
Ferritin 23.5 ug/L [13.00 - 150.00]
TSH 0.977 mIU/L [0.27 - 4.2] TSH within ref range makes primary hypothyroidism or
We need the reference ranges Mirandarr as members cannot respond without them. Just to complicate things all testing machines seem to have different ranges.
To add the ranges, click the down arrow across from
'More' and amend your post.
I'd also post on the Pernicious Anaemia forum re your B12.
Thanks SlowDragon. I did get my Vitamin D tested it was 55.6 nmol/L [50-125 nmol/L] with a no action needed from the GP. I have since heard that private doctors say anything less than 120 is deficient.
Yes many of us find we need vitamin D at least over 80nmol and around 100nmol may be better
Vitamin D mouth spray by Better You is good as avoids poor gut function. Suggest you supplement 1000iu for 2-3 months and retest. It's trial and error what dose each person needs. You may need higher dose
Once you Improve level, very likely you will need on going maintenance dose to keep it there.
I agree with Angel of the North when she said you should discuss your ferritin/haemoglobin/MCHC levels with your doctor. This is not a self fix, this is something your GP should be addressing. If you can't tolerate iron tablets then let him find an alternative.
Ferrous fumarate contains 65-69mg elemental iron in each tablet, for iron deficiency anaemia you would be prescribed 3 tablets daily - 195-207mg elemental iron. Floradix contains 7.5mg-9.5mg elemental iron per 10ml, you would have to glug an awful lot of Floradix at your own expense to get anywhere near the amount needed that would be prescribed.
There are wholefood iron tablets you can buy and they range from 5mg to about 22mg elemental iron per tablet depending on brand, but again that's a far cry from what would be prescribed.
Thank you SeasideSusie. I've managed to get a phone appointment with my GP next week. Otherwise it's the first week in January to see them. I think I'll ring back and hurry this up.
Doctors and professionals are very smart to diagnose a symptom as a particular single problem but when it is connected to Thyroid Hormones it is a 'whole body experience'. I should also state I'm not medically qualified but I had a few diagnosis before I finally diagnosed myself as hypo. You will see that thyroid hormones help MS (not that you have it but by the Professionals looking at your scan). T3 is the only Active Thyroid Hormone and our brain and heart need the most as does our millions of T3 receptor cells in our body. This is an excerpt from the following link:-
"In addition, abnormal levels of thyroid hormone (TH) have been identified in MS. However, in the clinic, insufficient attention has been paid to the role of TH in the remission period. Indeed, TH not only functions in the development of the brain but also affects myelination. Therefore, it is necessary to observe the effect of TH on remyelination during this period.
There are two possible B12 tests that people can get - Active B12 and Serum B12.
Serum B12 generally tends to have a top of reference range which is somewhere around 650 - 1000.
Active B12 (the test you had done) has a top of reference range which is somewhere around 150 - 180. Your B12 with a result of 148 is actually very good. A deficient result is considered to be around 70 or less.
I think that MS is one of those issues that has no definitive test - there are a range of test findings and symptoms that point to a diagnosis of MS, some things being more certain than others. Many people with MS wait years to get a diagnosis as a result, because doctors will resist doing all the appropriate tests. If you have a diagnosis then at least you can start getting treatment in the hope of arresting the disease.
I don't actually know anything about MS - the previous paragraph is just what I've picked up here and there. You will have to do your own research for the definitive facts.
You need to go back to GP and complain about all these results:
Ferritin 23.5 ug/L
Mean cell haemoglobin level 26.1 pg[27.0 - 33.0]
Mean cell haemoglobin concentration 318 g/L[335.0 - 370.0]
Ferritin is probably within range, but low. But the other two are not.
Ask for a full iron panel. If you are not a veggie, I'd also ask for a referral to gastroenterology to make sure there is no internal reason for iron loss
Those three results jumped out at me and given MS symptoms include fatigue I'm not surprised your feeling that with low ferritin.
I had almost exact same readings and SX but managed to get ferritin to 90 and it's been a complete turnaround.
I actually took liquid iron as GP also said I didn't have iron issue! Despite being low ferritin for 18 months.
So please do push GP to sort it out and continue with vit D. Those two alone should help you massively.
I would agree the b12 and thyroid results are fine.
Your tpO is a bit above range but that can fluctuate. If you have family history of hypothyroidism then continually check your levels evrye 6months.
Otherwise concentrate on vit D and iron first as both can take months to improve significantly.
Also make sure you add magnesium.and vitk2 Mk7 cofactors with your vit D.
If you have any muscular pain and stiffness (another MS sign?) Then the magnesium will also be a life changer for that too.
Give it a whirl
P.s. as vit D and K are fat soluble have with fatty part of meal. There is also a growing body of evidence that shows high ketones are great for protecting neurological function and myelination - coconut oil and fats in particular have been gaining recent awareness for Alzheimer's and other neurological condition.
You may want to use that as your 'fat' absorbing meal which is indeed you have MS should hopefully help on both fronts
I'm on Vit D - it's the first supplement I started as soon as they told me MS. I'm juicing green veg every day and thought I might be getting enough Vit K that way. If my gut isn't absorbing though I should supplement to ensure I get it. I take a Floradix Magnesium supplement. Will look into Magnesium too.
Sorry but I'm not sure what SX is.
I take heart from what you have said. That alone is medicine. I may come back with more questions. Hope you don't mind.
You're very welcome. I'm glad I could give you some comfort.
You can PM me any time you wish also.
Sorry I shouldn't use medical abbreviations on here
SX= symptoms
(Rx= prescription tx=treatment)
I forgot to say if you have specific areas of muscle stiffness Nerve pain then using a magnesium oil is brilliant to rub on the skin for immediate relief and absorption without the side effects you get through the gut. I use the better you brand spray you can get from Amazon or Holland and barrets.
I use the oils topically for top ups but take magensium citrate daily as it's also good for insomnia and regulating bowels. I knock out after 20 mins of taking them!
Yes it's difficult to know if you're getting enough vitamins absorbed through diet and difficult to test for all.
However most leafy greens have vit k1 in them.
Not vit K2.(I believe animal products have K2 in them)
The factor Mk7 is also important as apparently that is the version of k2 that directs calcium to bones.
You can buy them as separate supplements but I again take the better you oral vit D& K2 spray from better you (little red bottle not green or orange ) as do some members here as it's combined and taken orally for better absorption again.
If you had a full red blood count given those haemoglobin concentrations and low ferritin I'd bet my bottom dollar you would have mild microcytosis or on verge of it.
My RBC size was so small even the lab had put!! After my results saying microcytosis.... But apparently I'm not anaemic 🤣 because my iron level was ok (because I was supplementing at the time with liquid iron!!!)
Didn't matter that I was practically haneorrhaging for 3 weeks
Anyways back to your q- magensium citrate 400mg I believe is the daily recommended allowance (says on my bottle from Nu U nutrition )
I previously had solgar magensium citrate 200-400mg I believe
Check how much is in floradix
Magensium citrate is also great for constipation so now you're on ferrous fumarate you will get constipation so hopefully the mag again will take care of both.
(Top up with the oil on skin when you get muscle nerve pain and stiffness )
Build up the dose of ferrous fumarate over a week or two rather than start all at once
If you get your results and your thyroid is low, give them this study, demyelination doesn't just happen only in MS! They really should fully investigate the cause (I.e low vitamins) and look at other causes before coming to the conclusion of MS
Hi Hormone-hell. Thank you! This has been my point all along. They've jumped to MS without doing any tests or anything. I had the B12 done myself as that deficiency has many overlapping symptoms to MS. The consultant poo pooed my endeavours to get to the root cause.
Thanks for the article. It's from 2008 and talks about use of T3 to regenerate myelin (in mice). Wonder when this would trickle down to a GP investigating it.
Is the MRI the only test for MS you've had? I believe the full range of tests should include a serum test for a specific protein (sorry, can't remember OTTH what it is, but I've had it) and electrical potential tests administered by an electrophysiologist.
Did your scan show white matter lesions in the brain? If so, these can also be caused by other demyelinating conditions like PA, though your active B12 test would appear to rule this out. Serum auto-antibody tests for intrinsic factor and gastric parietal cells should still be done (don't supplement with B12 beforehand), though the false negative rate is too high to rule out PA. False positives are far less common, so if you test +ve for these ABs, you really do have PA. It can sometimes (rarely) happen that someone with PA has an individual need for very high serum cobalamin to maintain nerve function, and neuro signs will present long before B12 stores appear to been depleted, or any evidence of macrocytosis. I'm one such person. If nerve damage is not addressed promptly (B12 shots) it can become permanent. More info on the B12d.org website.
You have microcytosis, and as others have said, this requires prompt attention from your GP. Kick up a fuss if they continue to be obstructive.
Thank you for your reply. I'm astounded by the breadth of you knowledge you guys have!
Yes up to this point the MRI is the only test I've had. They thought I'd probably got MS on the basis of the demyelination on my optic nerve and the white matter lesions on my brain. I have other symptoms which in addition to demyelination and white matter lesions, point to other conditions (APS in fact) but they are choosing to ignore this. I know it is difficult to tell the two conditions apart solely on an MRI but my assigned consultant seems to think you can (studies exist to say otherwise, as does information on the Hughes website). Consultant has agreed to do more tests but only because I'm questioning what they say.
I've had my gastric parietal cell antibodies and IF antibodies tested and am negative for both. Unfortunately I have been supplementing with B12 so would this affect the results? I didn't know to stop taking it. Also on another thread someone said taking biotin can affect results for the antibodies - I'm taking biotin.
I've done the very crude test of sodium bicarbonate in the morning to see if I have any stomach acid. It takes me 20+ minutes to burp so I think I have very little stomach acid. This worries me as it means I'm not able to strip many nutrients from the food I'm eating. I'm taking Apple Cider Vinegar before each meal which does help. Although I'm wondering whether I need to take some of the Betaine HCl that I've heard about. What worries me most is root cause of the lack of stomach acid. Something is using up my iron. Could it a tumour or something doing both?
You talk about needing B12 shots to address the neuro issues. Both my GP and consultant said my B12 was within range. They are not going to give me injections. I've got myself some sublingual methylcobalamin 5000 mcg and am taking two of these daily. I'm not sure what an injection would give me. Would 10 000 mcg daily be enough to address the problem?
Lastly, you said I have microcytosis. Two GPs and the consultant looked at my results and thought them unremarkable. Can you point me to the results that tell you I've got microcytosis please? I will go back to them armed with this knowledge. I have got them, with gentle persuasion, to give me some ferrous fumarate.
I cannot thank you enough for your help. Happy New Year!
Hi Mirandarr , I saw your reply just now by chance...If you want to alert someone when you reply to their comment, click on the Reply button which is directly beneath that comment, rather than the general Reply at the top or bottom of the post. Hope that makes sense.
I must apologise re the microcytosis - I must have been reading another poster's results around the same time and got your results muddled with theirs. So sorry,I don't usually make that mistake! However, your ferritin is too low for optimal thyroid function, even though it's within the lab reference range. Remember these ranges are statistically derived, and may not have close relevance at the level of individual health. Your mean haemoglobin level and MCHC are below range, and your GP should be treating this more seriously, particularly if your general health is not good.
Biotin can affect various lab assays, as I understand it. Opinions seem to vary about how long a person should stop taking B vitamins before a blood draw, so you could try starting a new post just on that subject. There are people here who know more about this than I do.
You may have to persuade your doctor to test IF abs and g. parietal cell abs again. If they won't do this, you could do private testing yourself via Blue Horizon or Medichecks. Other useful tests for PA are homocysteine, which you've had done, and which is in the upper quartile of the range - surprising, given your active B12 result. Consider testing methylmalonic acid too, as this can reveal a problem with cobalamin metabolism at cell level.
You could continue with biotin and sublingual methyl-B12, if you don't plan to re-test for PA, but it doesn't help everyone. A 1000 mcg standard injection of hydroxocobalamin, given subcutaneously or intramuscularly, bypasses any absorption problems associated with PA, or with the autoimmune gastritis common in Hashimoto's (as well as all the other malabsorption syndromes).
The bicarb test is not thought to be very reliable, but it's a suck-it-and-see situation with stomach acid. Some people manage with cider vinegar, others need to use betaine HCl. I use betaine.
With regard to the MRI results, in your position I think I would want to be absolutely sure which neuro condition I was facing, otherwise I wouldn't know how to plan for the future. It sounds rather as though your consultant neurologist is concerned primarly with the costs of diagnostic testing, rather than with doing his or her best to find a definitive diagnosis, in order to offer you the most appropriate treatment options and future care. In my own experience, neurologists are more casual about this than they have any right to be.
Additional thoughts: Have you had a spinal MRI? This would reveal the presence of Sub-Acute Combined Degeneration of the Spinal Cord, which is one very important consequence of PA. It doesn't occur in all cases of PA though, even where other neuro damage is apparent.
Folic acid: if you're supplementing cobalamin, make sure you also take some form of this. Individuals vary in how they respond to synthetic folic acid, or folinic acid, or methylfolate. It's worth trying them.
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