Have recieved advanced vit b12 panel results from BH.

[nezzykins]

Hi again. Here are the results as they appear on result form.

Active B12 - 104 pmol/L 25-108 > 70 pmol/L -Vitamin B12 replet

Iron and UIBC

UIBC -37.0 umol/L ( 20-62)

Iron 22.0 umol ( 10-25)

Total Iron binding capacity 59.0 umol/L ( 45-70)

Transferrin saturation 37.3 % ( 20-50)

Folate ( serum) 11.8 ug/L ( 4.6-18.7)

Reticulocytes 1.50 % ( 0.2- 2.0)

Intrinsic Factor Antibodies -Negative.

Methyl malonic acid 0.20 umol/L < 0.29. Values < 0.29 umol/L are considered not indicative of B12 d3ficiency.

Homocysteine 9.0 umol/L > 15 umol/L indicate increased risk of cardiac disease.

The full blood count was within ranges apart from MCH which was 32.3 ( 26-32).

All looks fine to me apart from MCH. Not sure what that is so will do a search. So very good news apart from the fact that I am experiencing lots of vit b12 deficiency type symptoms. I think that I sound like a hypochondriac these days. Getting on MY OWN nerves!!! Lynne x

[nezzykins]

Just looked up MCV ( mean corpuscular haemoglobin). High readings can be indicitive of Vit B12 deficiency. Any comments please?. Lynne x

[sazzyb]

Hi nezzykins,

Is BH - Blue Horizon? I've just had my B12 done but the range isn't the same as yours, mine says

pmol/L 25.1 - 165.0. What is the figure 70 pmol/L for?

Re: MCH - This test is therefore used to determine the average amount of hemoglobin per red blood cell in the body. It is ideal that the result of the MCH blood test falls close to the middle of the range.

High MCH blood test results occur when the reading is above 33 pg per cell. A high MCH blood count reading may be associated with a few different conditions. One such condition is known as microcytic anemia which occurs when the individual has a deficiency of vitamin B12 in the body. Another condition that may cause high MCH blood test readings is that of thyroid malfunction.

medicalhealthtests.com/askq...

[nezzykins in reply to sazzyb]

Hi sassyb. I will type in exactly what is on my result form from Blue Horizon. It reads-

ACTIVE B12 104 pmol/L 25-108

>70 pmol/L- Vitamin B12 replete.

I am also a little confused! They haven't put a Hi or Low flag against it. This test was for ACTIVE B12.

I had the serum B12 taken 2nd April and this was 390 ( ref 191-663) . Hope this has helped?

Lynne x

[sazzyb in reply to nezzykins]

Hi Lynne, well I'm confused as well now, I had my Active B12 done only last month and the range given was 25.1 - 165.0. Such a big difference to yours, it doesn't make sense. My result was 56 so I know it's in the grey area. At a guess I think their '70 pmol/L- Vitamin B12 replete' must be the cut-off for the grey area. Who knows?! I didn't have anything else written on my results other than 56 and the range. I emailed them straight back and asked what their grey area was but they never replied. Thank you anyway, it'll bug me now though. Hehe. x

[nezzykins in reply to sazzyb]

Hi sassy. Did you have them done with Blue Horizon too? Ive just put all results on the PA forum so hopefully will try to make sense out of them lol. Lynne x

[sazzyb in reply to nezzykins]

Hi Lynne, Yep, Blue Horizon too, so very strange. I'm on the PA forum so I'll watch out for you. x

[Hidden]

Have you ever supplemented?

[nezzykins in reply to Hidden]

Hi hampster. Ive supplemented with magnesium and zinc and selenium but not taken them for a while. Ive bought vit b complex from H+B. Lynne x

[Hidden in reply to nezzykins]

You're an enigma Lynne. You have risk factors for B12d (Graves and long-term PPI use), you have symptoms, but your test results are OK. Apart from MCH which is high in B12 or folate deficiency. Do you have a test result for Eosinophils out of interest (it would be on the FBC)? The other test result I can't see is anti-parietal cells, have you had this one done? I certainly think there is no harm in you taking the B-complex (is it Complete B?) plus some sublingual B12 - H&B sell the Betteryou spray, alternatively you could get the Jarrows sublinguals.

I think you're more likely to have low stomach acid rather than high, what were the reasons for the PPI originally? Have you ever considered getting off the PPI? There's a few people who have done this successfully over on the PA forums, but it's not easy because at first your stomach ramps up acid production until it resets itself. That's why it's so hard to get off them, because symptoms are suddenly loads worse when you do.There are people on the Facebook Group that could help you with this, so come join if you're interested:

facebook.com/groups/1749289...

There are other things that are compromised on these drugs, magnesium being one of the main ones, also zinc I believe. Copper I'm not sure about, but I mention it because copper deficiency has the same neuro symptoms as B12 deficiency. So maybe taking a multimineral formulation might also be a good idea.

H x

[nezzykins in reply to Hidden]

Hi hampster. Since I joined the forum, I took the advice of a forum member about trying betaine with pepsin. I have bought this and succesfully stopped the ppi's. I was diagnosed oesophageal reflux disease just before becoming unwell with hyperthyroidism whereby Graves was diagnosed. I had block and replace but ended up with agranulocytosis from the carbimazole, and so had RAI ablation. Antibodies for parietal cells were negative. In fact all the antibody screening bloods were negative. I have put all my results on a post on the PA forum. Eosinophils were 0.2- ref range (0.00-0.44). I am taking a vit b complex called " Mega B 100 vitamin B complex" from H+B. Im getting very concerned about my symptoms. Please could you take a look on the PA forum for me hampster? I have put the full blood count results on a post yesterday, but no replies. Would appreciate it. Lynne x

[Hidden in reply to nezzykins]

Ok I'll have a look. But mega B 100 has quite a high dose of B6 so you might want to change that - too much B6 can cause neuro symptoms.

[Hidden in reply to Hidden]

Have you any other results you can look back on to see if Eosinophils have ever been higher?

[nezzykins in reply to Hidden]

Hi hampster. No, I haven't got a clue about any other past FBCs. Its only since joining TUK that I have been more proactive. GP has never mentioned anything from past FBCs either. Ineresting about what you say re B6! Learning so much on this forum. Do you think I should just go for the B12 sublingual spray? Lynne x

[Hidden in reply to nezzykins]

It's the kind of situation where I wish they would just do a trial of injections to see if you respond, but since that's unlikely to happen I would think supplementing is all you can do. I think you'll know pretty quickly if you respond, symptoms can intensify when you start - this is a good sign. Since you're symptoms are neuro I would say you need a minimum of 5000mcg, so the Jarrows sublinguals would probably be better than the spray. Put under the tongue or tucked under your top lip for as long as possible, 45 mins if you can (easier said than done). Take 800mcg of metafolin as well per day, Solgar do one (400mcg, 800mcg or 1000mcg). You can get both on Amazon. Or get a B-complex that has active folate in it, the 2 I know are Pure Encapsulations B-Complex Plus and Thorne Research Basic B. Stop the H&B B-complex for the time being and see if that has any effect on your symptoms - good, bad or indifferent.

The reason I mentioned Eosinophils was just a long shot about parasitic infection. Giardia and fish tape worm for example can both cause B12 problems, that don't necessarily show up in blood tests. I want to link you to a story about this but the PAS forum is down for maintenance.

[nezzykins]

Thanks hampster. Will order the jarrows sublingual and metfolin to try.as PA website is down, here are my FBC results.

WBC -6.8 ( 4.0-11.0)

RBC- 4.6 (4.0-5.1)

Haemoglobin -150 (120-150)

HCT 0.44 (0.36-0.46)

MCV- 95.0 (80.0-99.0)

MCH 32.3 (26.0-32.0)

MCHC- 338 (315-345)

Platelets 256 (130-475)

Neutrophils (abs) 3.2 ( 2.0-7.0)

Lymphocytes (abs) 2.5 (1.0-3.0)

Monocytes (abs) 0.8 (0.2-1.0)

Eosinophils (abs) 0.2 (0.00-0.44)

Basophils (abs) 0.1 (0.00-0.1)

It then reads - methyl malonic acid 0.20 umol/L <0.29 umol/L are considered not indicative of B12 deficiency

Homocysteine ( serum) 9.0 umol/L > 1105 umol/L indicate increased risk of cardiovascular disease. Elevated values may occur if correct sample collection procedures are not followed.

Intrinsic factor - NEGATIVE.

Thanks for taking a look. Lynne x

[Hidden in reply to nezzykins]

Sorry I meant the main PAS forum, not the HU one. For some reason HU is not all that active. Since the main PAS form is down there is a redirect to the FB group, which to be honest is prob the most active one at the moment. I did look at your results and your MCV and MCH are on the high side, but all the others are ok really. Homocysteine is ideally about 7ish so yours isn't too bad.

[nezzykins in reply to Hidden]

Hampster. Ive just received the jarrows 5000 mcgms but the lozenges? Also the solgar metafolin 400. Would the MCV and MCH point to vit b12 prob? Thanks for advice. Lynne x

[Hidden in reply to nezzykins]

They're sublingual so you just pop one under your tongue, or tuck under your top lip, and let it dissolve as slowly as possible, don't suck or chew it. If you react strongly try splitting it into quarters and build up the dose slowly.

High MCV and MCH do usually point to B12/folate def, but they can be raised in hypothyroidism. It's to do with red blood cell size being larger than normal. My non-medically backed view of that is it's raised in hypo because so many are deficient and untreated. Also I think I read somewhere that being hypo makes the methylation cycle sluggish so that might well be the reason.

I hate that I said that - "I think I read somewhere". I'll try and find the link and post it if I can later.

H x

[Hidden in reply to Hidden]

I think this is where I heard it, it's quite a long presentation, but interesting:

mthfr.net/mthfr-and-thyroid...

H x

[nezzykins in reply to Hidden]

Hi hampster. Thank you so much for your messages and support. You are amazing, really! I did reduce levo down a little about 4 week ago. Went from 75/100 to 75/75/100. Starting to feel very very cold. I think that due to this and what you say about possible hypo thyroid re ?mcv, I will go back to 75/100 and see if things improve. Started the metfolin and Jarrows sub lingual today. So, fingers, eyes and toes crossed hehe. Will take a look at the link. Thanks for this. Lynne x

[Hidden in reply to nezzykins]

Hi Lynne, we were discussing normal test results on another group and I thought you might be interested in these 2 articles:

bloodjournal.org/content/10...

"It is concluded that Cbl, MMA, and HCys levels fluctuate with time and neither predict nor preclude the presence of Cbl-responsive hematologic or neurologic disorders."

ncbi.nlm.nih.gov/pubmed/205...

"Serum B(12), homocysteine and methylmalonic acid levels are unreliable predictors of B(12)-responsive neurologic disorders, and should be thoroughly investigated and presumptively treated in patients with unexplained leukoencephalopathy because even long-standing deficits may be reversible."

[nezzykins in reply to Hidden]

Thanks for links hampster. Feeling dreadful today. Hands, feet and bladder as usual. Head feels as if it's swirling. Ringing in ears etc. Can't eat. Gp visit this morning. Asked for referral to either neuro? or Gastro? Been Rx'd Amitryptilline 10mg at night to see if this will improve symptoms. Will review me in 2 weeks. If no change, will then refer me on. Lynne x

[Hidden in reply to nezzykins]

It's probably a reaction to the sublingual Lynne, start up symptoms.

[nezzykins in reply to Hidden]

Hi hampster. Thanks for your reply.How long will I feel like this? 2nd dose of the b12 and metfoln today. My whole body is now Jingling. Im getting very very low in mood too. Can't stop crying. it's so bad I feel like my life is over.Lynne x

[Hidden in reply to nezzykins]

Lynne it sounds like you're overmethylating, have you got a b complex handy some niacin might help. I'm out now but will reply again when I get home. Don't take the dose tomorrow you prob need to build up more slowly.

[nezzykins in reply to Hidden]

Hi hampster. Thanks for suggestion. Will omit b12 and the metafolin tomorrow. Thanks for being so supportive. Lynne x

[Hidden in reply to nezzykins]

Hi Lynne, did you take 400mcg of methylfolate or 800mcg? I'm going to add a few links again from the MTHFR website with some suggestions.

mthfr.net/how-much-methylfo...

If you scroll down to the bottom points 1 to 5:

"1) Take small amounts of methylfolate along with methylcobalalmin and work up.

2) Consider taking 1/2 tablet of Active B12 with Methylfolate. This amount is typically well-tolerated by many.

3) Increase to a full tablet after 1 week.

4) Continue to increase the amount taken by 1/2 tablet every 7 days until you feel really good.

5) If you feel side effects from taking Active B12 with Methylfolate, take 1/10th tablet of Niacin."

The active B12 with methylfolate tablets he's talking about contain 1000mcg B12 and 800mcg folate, so half a tablet would be 500mcg B12 and 400mcg folate. And the Niacin 1/10th amount would be 50mg.

Here is one about methylfolate side effects:

mthfr.net/methylfolate-side...

And one about over and under methylation:

mthfr.net/overmethylation-a...

So as you can see starting with smaller doses and adding some niacin is possibly the way to go. As you've had such a strong reaction I do think it's a sign that you need it however. Maybe try starting very slowly (after a break tomorrow) with half a methylfolate tablet (200mcg) and a quarter or an eighth of the MethylB12 sublingual (if you can cut it that small). And you can also space it out, maybe alternate days, until you can build it up.

Meanwhile buy some niacin and have it handy if you start feeling that way again with side effects, take 50mg. H&B do a 100mg one so half a tablet (take it with food to avoid niacin flush, although it does say non-flush on it):

hollandandbarrett.com/shop/...

And if you really can't get on with it then you could try hydroxoB12 sublinguals and normal folic acid, but see if you can give the methyl another go first.

I hope you feel a bit better tomorrow.

H x

[nezzykins in reply to Hidden]

Thanks hampster.The 1st day, I took 400 mcgms of metafolin in the morning and another 400 at night I also took the Jarrows methylcobalomin 5000mcgms sub ling in the morning. Yesterday, I took 400 metafolin and the methylcobalomin 5000mcgms. Will omit all for today and start as above tomorrow. Thanks for links. The Amitryptilline has helped a great deal too. Lynne x

[Hidden in reply to nezzykins]

Best to take earlier in the day, I usually do after breakfast or lunch. x

[nezzykins in reply to Hidden]

Thanks hampster. Will start on half tomorrow. Lynne x

[nezzykins in reply to Hidden]

Hi again hampster. An update for you as youv,e been sooo helpful. Iv,e had a repeat thyroid panel done with BH on the 3rd of June and the results do not tally. Im wondering what you think. Ive reduved my levo down to 75 per day from 75 75 100 due to tsh as I also feel very hyper. Here are the results.

TSH 0.059 ( 0.270-4.200).

Free T4 20.28 (12-22).

Free T3 4.4 (3.1-6.8).

Had cortisol checked as ive got extreme anxiety.

Cortisol 629 (basal 171-536; evening 64-327).

DHEA Sulphate 1.7 (0.7-12.5)

Bloods were taken at 10.30am before breakfast.

My last thyroid profile on the 29th April was-

TSH 0.203 (0.270-4.200)

Free T4 20.02 (12-22)

Free T3 4.6 (3.1-6.8)

It looks to me as if im not converting t4 to t3. Iv,e got hand tremors, red toes and fingers and still have the irritable bladder. I remember having all of these symptoms when I was being over replaced 3 yrs ago and thats what prompted me to get another thyroid panel done. I'm sooo confused and also losing my patience with my surgery. I was rx'd Amytriptilline, but shaws mentioned that it should have been T3 and not Amytriptilline for which I agree. I feel as if I am hitting my head against a brick wall! NHS here in South Wales do not rx T3. Levo is all anyone gets. Would you know why my tsh is so low unyet my T4 is at top end unyet T3 is at lower end? Be very greatful to you for your opinion. Lynne x

[Clutter in reply to nezzykins]

Lynne,

You're not converting well by the look of your results. If your GP won't prescribe T3 why don't you buy it online and self medicate? PM me if you want a link to an inexpensive source.

[nezzykins in reply to Clutter]

Thanks clutter. Yes, it looks as if im not converting I agree. Although my T3 is not all that good and my T4 is at top end of range, I can,t understand why I feel hyper! I felt exactly like this 3 yrs ago when GP insisted it was anxiety/depression! My tsh was very very low on blood test, but even then, she would not have it that there was anything wrong. Left me for months on end until I asked her to refer me to endo privately. He told me immediately after looking up my past blood results, that i was way out of range and reduced levo to 75. Ive lost nearly 2 stone since beginning of the year! I live in South Wales and here, they only rely on TSH for diagnosis. Its a disgrace and very scary! I have become extremely paranoid with my GPs and dont trust their practice anymore. Sorry for the rant but im just sooo annoyed that I have had to take things into my own hands and pay for blood tests to try and keep myself well! Thats all they want to do is pump me with antidepressants! I think that they must still living in the dark ages honestly! How they get away with it all the time just beats me. What I really would like to find out, is whats causing the conversion problem. Ive decreased levo to 75 from 75/75/100 as I would say that I am clinically hyper just like the last time. How do you view it clutter? Lynne x

[Clutter in reply to nezzykins]

Lynne, I was over replaced to suppress TSH but despite decreasing from 200mcg to 100mcg Levothyyroxine I still had jitters, anxiety, palps, racing heart, fibro, COPD, pain. I was on 200mcg Sertraline before Levo and it didn't help the anxiety. I really think it was Levo not hyper. My FT4 was low and my FT3 below range but endo did nothing so I stopped all meds inc Sertraline for 4 weeks and then resumed T4 and self medicated with T3. 6 months later I'm doing well and endo now prescribes T3. I haven't resumed Sertraline either. I still have palpitations and shortness of breath on slight exertion but I think this is a fitness issue and hope it will improve as I gradually become fitter.

Antidepressants can affect thyroid function ncbi.nlm.nih.gov/pubmed/957...

If you feel confident in self medicating I think you might find a real benefit in taking T3 in combination with T4.

[nezzykins in reply to Clutter]

Hi clutter.Thanks for the link to interesting article. Sounds as if you have really been through the ringer!

I have been off antidepressants for approx 14 weeks. The amytriptilline that they prescribed, were for the neurological symptoms that have appeared over past few weeks ie red fingers and toes with pins and needles, plus bladder irritation. On top of that - tinnitus, but they made the anxiety worse so I stopped them after a few days. At first, I thought B12 defficiency but after having advanced Active B12 panel through BH,, all results were within norm plus all antibodies were negative. So PA was excluded. In my area they will not test for T3 or T4- only TSH, so if I were to self medicate, it would become very expensive to keep using BH on a continual basis. This is the down side as well as having to pay for T3 also. My GP has not yet seen my latest thyroid panel result so that should be interesting! I will give it another shot by asking her to refer me to endo again and try my luck there. I have been thinking seriously about changing GPs, as I really dont feel safe with them. Do you know much about the "named patient basis ?"Lynne x

[Clutter in reply to nezzykins]

Lynne, NHS T3 is expensive for some reason but £13.95 x 100 tablets is affordable, I think. You could do without FT3 testing and go on symptoms and TSH, bearing in mind T3 lowers/suppresses TSH.

I hope you get the endo referral but bear in mind they're mostly diabetes specialists and are as likely to treat your TSH as your GP. Mine only became helpful after I cured myself.

Named Patient Basis enables GPs to prescribed medication not licensed for use in UK ie NDT and LDN etc. There are templates and info on thyroiduk.org

[nezzykins in reply to Clutter]

Hi clutter. Surely if an endo sees my t4 t3 and tsh, that do not correlate, he must have more ideas about whats happening ie conversion problem? Apparently there is an endo who specializes in thyroid that works at Spire in Cardiff. Although it does say that he specializes in thyroid and diabetes. At least it does say thyroid, so will try him out. I want to know WHY im not converting and whats causing this to happen. I read somewhere on here that a faulty gene could be the cause, but there again, this would have showed up 7 yrs ago after RAI after which i started on levo. I think im getting paranoid clutter! I retired from work in 2003 and have NHS pension. The Dss made up the balance of my income by way of incapacity benefit. They have now stopped benefit because they say that my contributions have run out!!

The amount im living on doesnt even cover utility bills let alone food, clothes, car costs etc. I think that this is contributing to my health problems too. I just feel that I cant fight systems anymore. I just wonder whether this stress csused by my ignorant Gp and the DSS are affecting my thyroid. Lynne x

[Clutter in reply to nezzykins]

Lynne, there is a gene test which can detect whether impaired deiodenisation is compromising conversion and I know people have successfully used the results to persuade GPs/Endos/CCGs that they need T3. I don't know whether the NHS tests for it though. Why do you think it would have been noticed when you had RAI?

I didn't care why I wasn't converting T3, I just wanted the lack of it addressed which is why I self medicated when the endo took no notice of my below range T3.

If you contact your local CAB office they should be able to advise you whether your incapacity benefit was rightly or wrongly stopped. I thought contribution based awards were only valid for a year and were replaced with something else.

I'm not yet able to cope with stress. I become breathless with hammering palpitations.

[nezzykins in reply to Clutter]

Hi clutter. It was following the RAI that I went on levo. Sorry, I didnt explain it correctly. CAB sounds like a good idea clutter. Ive just read an article that says high cortisol affects thyroid. Im wondering whether this may be the case with me as my cortisol level is high. The hospital put me on a 60mg tapering dose when they thought I had a GED flare up, following an allergic reaction to quetiapine ( long story but post is on here). The drug totally wiped out my thyroxin and it is now contraindicated for hypothyroid. Ive not felt well since all of this. My last dose of prednisolone was on 17th April and i just wonder if they weaned me off too quickly which has left me with horrendous anxiety and a high cortisol level. I understand what you say about self medicating with T3 and if I was sure that this was a permanent problem, then I would definately try adding the T3. There's something in my head telling me it's withdrawal from prednisolone. GP says no, but have a very highly tuned nervous system so it could be possible that this is causing the cortisol problem, which is affecting everything else. The added stress with benefit hasn't helped matters! Thanks for reply and info/suggestions. Hope you are keeping well at the moment clutter. Lynne x

[Clutter in reply to nezzykins]

Has your GP tested your cortisol, Lynne? They seem to make all sorts of assumptions without testing as far as I can see and if that is the cause at least you can address it.

[bridgit763 in reply to Clutter]

See if armour thyroid might be might work better. You may be reacting to the additives or need T3 and T4 , rather than just T4 in synthroid.

[Hidden in reply to nezzykins]

Hi Lynne, I'll have to leave the thyroid stuff to others, as I'm hyper I'm not that familiar with the complexities of thyroid replacement meds.

Re the anxiety, has this come on since you started the b supplements? It could be the methylfolate as we talked about before.

H x

[nezzykins in reply to Hidden]

Hi hampster. I left the b12 alone after the initial side effect. So the anxiety is deffo not connected to present situation. I am going to give it another try once this present situation has passed. Iv'e bought the Solgar 1000mcgm sublingual from amazon and going to give it another try once I am more settled. Got palps and tremors as well as all the other symptoms we talked about a few weeks ago. Not well at all. Thanks for reply. Lynne x

[nezzykins]

Oh. Forgot to mention that I had hair samle analyzed and came back highly sensitive to gluten, pollen ( although I have never suffered with hayfever), pepper, fructose and caffeine. Have stopped eating bread, biscuits and cakes, and had about 24lb weightloss since. Lynne

[bridgit763]

In my opinion anyone with B vitamin deficiencies, depression brain fog etc should have a blood test for MTHFR. It inhibits folate absorbsion and wreaks havock on your body. If it is positive you will need further tests to determine best course of action though. I am c766t Homozygous ie. I have two markers for it and even methylated folate in doses over 200mg make me sick. Also consider low stomach acid as well which has the same symptoms as too much, but with nutrient deficency.