Do I have some sort of anemia?

[Vonni7]

I have been struggling with tiredness and fatigue episodes for more years than I care to remember! I was diagnosed with Hashimotos Thyroditis so took medication for that. Still the tiredness and fatigue episodes continues. Then a course of medication for my adrenals was tried with some success! but nothing lasted. My tiredness and fatigue continued. As I got older - I am now 70 - the symptoms increased. Apart for the tiredness and fatigue I also notice I am breathless sometimes and also experience dizziness! I am now wondering if the root of my problem is some sort of anemia/b12 deficiency? Two years ago a blood tests (MCV and MCH) showed mild macrocytosis but I was told it was of no consequence. recently another blood test - MCV - flagged up that I was High - the MCH was also high but wasn't flagged. The doc told me it was inconsequential. My b12 level is 116 which seems on the low side but I was told it was normal! Do you think I might have some sort of anemia? I would be so grateful for some help with this long standing problem!

[clivealive Forum Support]

Hi Vonni7 do you know what the range was for the SerumB12 as 116 seems pretty low to me = plus your thyroid problems may lead you to having a Vitamin B12 deficiency.

[Vonni7 in reply to clivealive]

It was an Active B12 blood test and the range was 25.10 - 165.00 pmol/L Even though I am well within range looking at those figures I have read that my result might be considered low?

[Polaris]

Hello Vonni7

I'm shocked that your GP considers your results normal, especially in view of high MCV/MCH, your neurological symptoms and history. Your B12 is very low and your doctor may not be aware that 40% of those with autoimmune thyroid disease also develop PA/B12def. (a similar percentage of PA sufferers also have thyroid disease).

You could try writing to your GP with latest BMJ research document, summary only (full document behind a paywall), but it gives an idea of the complexity of diagnosing PA/B12 deficiency as well as the importance of treating your neurological symptoms without delay.

bmj.com/content/349/bmj.g5226

pernicious-anaemia-society....

As well as BCSH and NICE guidelines, the Dutch links on the r/h side of this forum also explain more about testing, B12 misconceptions and the importance of early and adequate treatment. It might be a good idea to join the PAS as they have leaflets for professionals and may be of support in getting the correct treatment.

stichtingb12tekort.nl/weten...

Two experts on the frontline, Sally Pacholok, "Could it Be B12?" and Dr Joseph Chandy, have been studying vitamin B12 deficiency for years and both describe how under diagnosis is causing severe and permanent neurological/psychological damage if not treated early and adequately.

Dr Chandy describes how low vitamin B12 affects every system — nervous, digestive, cardiovascular, endocrine, ear, nose and throat,’ that it should be easy to get all the B12 we need from our diet. It comes from every single animal product — meat, fish and dairy. But two problems can affect this.'

‘As we age, the stomach shrinks and produces less of the (hydrochloric) acid needed for B12 absorption to take place,’

‘Second, those with pernicious anaemia (*known as B12 neuropsychiatric syndrome) have an inherited glitch that means their body can’t absorb B12 from the stomach. This can kick in at any age, but is more common as we age.’

.........

The intestines are lined with microvilli, which is where absorption takes place and people with Hashimoto's often also suffer from gastric /digestive problems resulting in inability to absorb not only B12 but other essential vitamins and nutrients (like vitamin D, B6, zinc, selenium, magnesium, iron, etc.

Very warm wishes for an early diagnosis and better treatment Vonni7.

PS It could be a good idea to take someone close with you to your next appointment for extra support in ensuring this is taken seriously.

[Vonni7 in reply to Polaris]

Thank you so much for all this valuable information - I'll look at all those links that you sent me. BTW - my b12 blood tests were Active B12 with a range of 25.10-165.00 but even though my result looked normal I have read that that might not be the case and I could be on the low side?

[Vonni7 in reply to Polaris]

One more question please Polaris - is it possible to have anemia but have some good days in amongst the bad! some days I am really not too bad and think I might have turned a corner but I always fall back into the old tiredness and fatigue!

[Polaris in reply to Vonni7]

I'm relieved for you that your B12 result is for activeB12/holotranscobalamin but you're right in thinking that, although perhaps less likely, you can still have PA as, already shown in the BMJ link, there is no gold standard test, with symptoms a more reliable guide, especially when older. Had you been supplementing with B12 at all ? Good advice from Marz to ensure thyroid is optimally treated.

Like you Vonni, I'm over seventy with Hashimoto's. I've been self injecting B12 for over eighteen months, since two viruses left me with crippling fatigue/neurological symptoms of PA, and am very glad I did 🤗

I'd also self treated with NDT before this (the only way I found to ensure that Hashimoto's was also optimally treated (another story!). Having watched my lovely sister deteriorate into vascular dementia after years of misdiagnoses (ME/CFS) when in hindsight obviously severely B12 deficient/Hashimoto's, I personally was reluctant for another battle with GPs and determined to avoid the same fate........

You will see from the video I posted recently, that Professor Smith recommends higher B12 levels for older people to prevent brain atrophy:

youtube.com/watch?feature=p...

(Sorry can't get above link to work but can access it here

healthunlocked.com/pasoc/po... )

Professor David Smith at the PAS conference 2013 begins to speak after about 4 minutes about low B12/brain shrinkage and concludes :

"In the VITACOG trial, raising the median plasma B12 level from

330 to 672 pmol/L largely prevented the atrophy of Alzheimer's related brain regions. It is clearly very important to maintain a VERY GOOD and not just an adequate, level of B12 ".

(people with Hashi's often have higher homocysteine levels and Prof. Smith has found that B vitamins reduce homocysteine plus brain atrophy by 90%)

.............

B12 deficiency has sometimes very subtle symptoms and creeps up slowly over years. So, it stands to reason it's not a quick fix and, although there are still days when all I want to do is sleep, the numbness, tingling, dizziness, tinnitus, anxiety, low mood, difficulty finding words, etc. has mostly disappeared. Like many on the forum, symptoms generally only return under stress, even small amounts of alcohol, or overdoing exercise/things generally.

I'm not a medic, nor an expert on blood tests, but believe high MCV/MCH should have been taken into account by your GP in coming to a diagnosis. Back in the old days 😀when GPs relied less on tests, mine would pull down bottom eyelid to see whether it was pale and showing anaemia. Mine is back to deep pink after careful dosage of Gentle Iron, Vit C, other vitamins and B12 injections 🤗

[Vonni7 in reply to Polaris]

Thank you so much for this Polaris - I can't tell you how good it feels to be connecting with people who understand what I am going through! as opposed to my doc who suggested I might be depressed and maybe a course of antidepressants might be in order!! The BMJ link was very interesting - best line - "If the clinical features suggest deficiency then it is important to treat patients to avoid neurological impairment even if there may be discordance between the results and clinical features" - yes I have been taking B12 supplements for many years - my dose at the mo is 500mcg Methylcobalamin and 500 mcg Adenosylcobalamin Sublingual tablets. Yes I will follow advice from Marz and post on Thyroid UK. This year I seem to have been worse than ever and I have been putting it down to a combination of a move from Australia - emotional stress which upset me terribly and the fact that I was in hospital with sepsis/septicemia last december! So yes! I think your comments re stress are very relevant! I agree with you Polaris that the symptoms are very subtle and when I look back I can see that it has slowly crept up on me over the years and I have sort of adjusted my life to cope with it! I live alone and don't have the commitment of a job so when I have bad times I just shut down until I feel better - but I have decided I don't want to live like that any more as it is really impacted on my life and is depriving me of so many things I would like to do! a social life would be nice!! My ferritin level is 78.4 ug/L in a range of 13.00-150.00 which seems OK? and my folate (serum) level is 18.13 ug/L in a range of 2.91-50.00 which might be a bit low - especially considering that I tested positive for the MTHFR gene mutation C677T Heterozygous which I think also means that I require I higher level of B12? I feel my vitamin D level might be on the low side at 91 nmol/L in a range of 50.00-200.00 - again I have been taking Vitamin D supplements for some time - in the past it was a higher dose but I have been o 1000IU for some time. I totally agree with you about the high MCV/MCH and this more than anything has prompted me to investigate and look for solutions! I have absolutely no faith in my doctor and would like to self medicate like you but feel that I need to gather some information first! Once again - thank you so much for your help! I will join the PA Society and buy the Sally Pacholok Book! Onward!

[Polaris in reply to Vonni7]

It sounds like you've had a huge amount of stress and I cant imagine how hard it must have been moving from another country and starting again plus emotional stress - my own health went down after just house move and other stress.

It may be v, hard to convince GP to give injections once you've supplemented. This is mainly why I decided to self inject - daunting at first but soon becomes routine - lots of information here if that's what you eventually decide to do.

I do hope all starts to go well for you now Vonni x

[Vonni7 in reply to Polaris]

Thanks Polaris! I am pretty sure I will self medicate in some form - just investigating some high dose Liposomal B12 at the mo - how much B12 is in an injectable vial? and where do you buy it? do you inject it into a muscle? or can you inject it anywhere? how often do you inject? don't want to be a nuisance! but like I said, it is so great to find people - like you - who understand the problems!

[Polaris in reply to Vonni7]

No problem Vonnie. Here are the most used and reputable pharmacies in Germany. I believe the safest place to inject is into muscle of the thigh - some use sub cut. Lots more information on the forum.

versandapo.de/vitamin-b12-d... - cheapest delivery charge.

mycare.de/online-kaufen/b12...

Easy to pay with PayPal

........

Syringes, needles, sterile wipes and Sharps boxes from Medisave:

medisave.co.uk/instantsearc...

BD Plastipak 2ml syringes

TErumo Agani 21G x 1 1/2 " green needles to draw the solution up into the syringe

BD Microlance 23g x 1.25 "Blue needles for the IM injection

or

BD Microlance 26G x 3/8" Brown needles for sub cut

..........,

Warm up the ampoule of B12 to body temperature and Inject slowly:

IM injections: nursingtimes.net/clinical-a...

Sub cut: cc.nih.gov/ccc/patient_...

Store B12 away from light.

[Marz]

Hi Vonnie - I see your last post on the Thyroid UK forum was a year ago - when requesting T3. I am thinking your fatigue could be due to your thyroid being under treated . If you have recent results with ranges - then posting on Thyroid UK with information from above as well - there will be lots of people to help.

Did you manage to source some T3 ?

Have you had Ferritin - Folate and VitD tested ?

[LCW8]

So sorry to hear of your struggles! There are quite a number of causes for the conditions you described..perhaps it would be helpful to Google with a query regarding tiredness and dizziness. I am 69 and have breathlessness and tiredness too..I think I'll take my own advice, instead of randomly taking iron pills and this and that. I'm on methylcobalamin B12 tablets..lost them round the house somewhere so I better get back on them (find them!) I found they helped me to a certain degree.

All the best Vonni. Let us know how you got on.

[Vonni7 in reply to LCW8]

Thanks for your message LCW8! I have been doing a lot of investigating - and what I have learnt plus the results of some of my blood tests have led me to believe that I have some sort of anemia! The treatment for all of the types of anemia I have been looking at is the same! B12! So now I am investigating how to self medicate in some form! Even though I am taking a B12 tablet each day I believe the dose/method is not sufficient for me and I might benefit from either injectable B12 or Liposomal B12! for these types of anemia Iron is not the issue - just B12! hope you found your methycobalamin B12 tablets!

[LCW8 in reply to Vonni7]

Never heard of Lipsomal B12! I'll look into it, given the similarities between our symptoms. I think I will go with injections too..a course through the medical centre might help. I'll find the B12, don't worry, it's just a matter of moving things around in cupboards! Glad for the feed back you're getting, hope you get well soon.