A past post regarding how important it is to te... - Thyroid UK

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A past post regarding how important it is to test for Pernicious Anaemia if we have symptoms.

shaws profile image
shawsAdministrator
41 Replies

I have posted this link in the past and it reveals what a serious deficiency in B12 can do to one's health but - again - it seems the knowledge isn't with GPs or other doctors.

The last video in this link is of a doctor with unknown B12 deficiency who had been very crippled with an undiagnosed perncious anaemia.

youtube.com/watch?v=BvEizyp...

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shaws
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41 Replies
nightingale-56 profile image
nightingale-56

Always good to keep this video in mind for new people shaws . Thank you for posting.

Jumbelina profile image
Jumbelina

Thank you for posting Shaws. Some of this rings a bell- I immediately took some B12, which I often forget 😀

shaws profile image
shawsAdministrator in reply toJumbelina

My mother had pernicious anaemia (I do too). Later on in my mother's life her GP told her that she needed no more injections for P.A. That decision led to my mother dying an awful death (insufficient pain relief) due to developing stomach cancer caused by her GP stopping injections. So they also do not know how serious P.A. can be and I doubt they check many patients' blood for perncious anaemia.

Jumbelina profile image
Jumbelina in reply toshaws

I can see why you would feel strongly about it. It is horrible to see how it is so often overlooked- and at what a cost to patients.

nellie237 profile image
nellie237 in reply toshaws

Mmn, I think a lot of elderly patients are being denied B12. I think it should be standard in care homes, also Vit D.

mountainice profile image
mountainice in reply tonellie237

I dread to think what is happening in care homes now that there is a push to take people off injections or reduce or put them on tablets.

shaws profile image
shawsAdministrator in reply tonellie237

I agree with you. I do hope that people in care homes are tested for autoimmune diseases. If an elderly patient isn't aware of what is going on around them, may not be able to say that they have certain clinical symptoms.

nellie237 profile image
nellie237

Some of that is quite hard to watch.

I'd like to see a hypothyroid Dr's journey on video.

shaws profile image
shawsAdministrator in reply tonellie237

I think the majority of us on this forum would agree. even although there are thousands of people who have a dysfunctional thyroid gland but do not have the extent of as many symptoms or autoimmune problems as on this forum.

nellie237 profile image
nellie237 in reply toshaws

I doubt that anyone taking thyroid hormones feels well most of the time.......I think there are an awful lot of people out there putting how they are feeling down to being menopausal, work stress, looking after other people, depression..........and of course GP's confirm that for them.

shaws profile image
shawsAdministrator in reply tonellie237

I agree with you and it is surprising when you come onto this forum to find out that the majority of GPs know very little about clinical symptoms of common autoimmune diseases.

Thankfully, due to the internet we are able to connect with others who've similar symptoms and can find helpful information.

jrbarnes profile image
jrbarnes

Sounds like my case. My blood count was normal. When my B12 was tested it was in the range noted to be associated with neurological problems. I have no idea how long it was that way. I don't know if it's the low stomach acid due to low thyroid but I eat plenty of meat, eggs and fish so I had no reason to be low in B12. I currently take the methyl B12 and folate which puts my B12 towards the top of the range.

shaws profile image
shawsAdministrator in reply tojrbarnes

My mother did not have a dysfunctional thyroid gland but l developed Pernicious Anaemia like her.

I also have PA so assume it is due to genetics as my sister did not develop P.A. or hypothyroidism but she did became housebound due to developing Rheumatoid Arthritis which made her physically incapable of walking or doing anything physical due to the pain and then distortion of bones etc. My daughter also developed R. arthritis and is now severely disabled. I believe the GP doctor who did not listen to me when she was very young (about 5 years old) due to her constant complaining of painful legs. The GP actually shouted at me for 'putting ideas into her head' when after several visits I said to him 'my sister has R.A'. He did not send my daughter to a specialist, just to double-check.

We don't have much of a chance when doctors who we believe are knowledgeable are actually ignorant.

My husand has R.A. also, so daughter has two relatives who have it also.

You can't prevent pernicious anaemia caused by a lack of intrinsic factor. Without intrinsic factor, you won't be able to absorb vitamin B12 and will develop pernicious anaemia.

thyroiduk.org/

It doesn't matter if we have a healthy diet but it is a serious condition if undiagnosed and the problem is within our own stomach which, for some reason, no longer can it absorb B12 (the intrinsic factor). I also have the condition and have regular B12 injections because my stomach cannot absorb it from food or supplements etc.

jrbarnes profile image
jrbarnes in reply toshaws

Is it lack of intrinsic factor that can cause PA? My total iron is normal however my Ferritin was about 22% in range.

shaws profile image
shawsAdministrator in reply tojrbarnes

I do believe the definition of P.A. is due to the intrinsic factor being missing and not due to low B12 in the body. This is a link:-

You can't prevent pernicious anemia caused by a lack of intrinsic factor. Without intrinsic factor, you won't be able to absorb vitamin B12 and will develop pernicious anemia.

nhlbi.nih.gov/health-topics...

Excerpt:

When to see a GP

See a GP if you think you may have a vitamin B12 or folate deficiency.

These conditions can often be diagnosed based on your symptoms and the results of a blood test.

It's important for vitamin B12 or folate deficiency anaemia to be diagnosed and treated as soon as possible.

This is because although many of the symptoms improve with treatment, some problems caused by the condition can be irreversible.

nhs.uk/conditions/vitamin-b...

Polaris profile image
Polaris in reply toshaws

Thank you for posting this video shaws.

It is a very subtle condition that creeps up slowly even when you are highly aware of the very varied symptoms. I had a tia (high homocysteine) brought on I believe by the stress of fighting to get adequate B12 injections for my sister and moving house. It was only later that I put two and two together after looking at blood tests, discovering microcytic anaemia, and realising the terrible fatigue and tingling toes, etc. meant that I too needed injections. It took four years of self injecting every other day to feel almost normal again.

Thyroid and PA conditions often run in families (three in ours) with research showing that 40% of those with thyroid conditions go on to have PA.

It is advisable for anyone suspecting deficiency to get tested before supplementing, even though there is no reliable test, otherwise it is almost impossible to get a diagnosis. Martyn Hooper, Chairman of PA Society, had three negative Intrinsic Factor tests, by which time he was, unfortunately, disabled.

Anyone looking for more information :

b12deficiency.info/signs-an...

shaws profile image
shawsAdministrator in reply toPolaris

You're brave if you can self-inject. and am glad you were able to.

Polaris profile image
Polaris in reply toshaws

Thanks to the amazing help and support of members of these forums.......💐

jrbarnes profile image
jrbarnes

Thank you for the links.

JGBH profile image
JGBH

Thank you Shaws for this excellent video! Every surgery should see this video, as well as many consultants, haematologists, gastroenterologists, cardiologists, etc. I have problems understanding WHY doctors are not made more aware of vitamin B12 deficiency, at medical school. Surely, they must have become more aware now but they still are ignorant and stubbornly arrogant.

shaws profile image
shawsAdministrator in reply toJGBH

I would have thought that medical students would have, at least, been taught about the commonest of autoimmune diseases. I am aware now that they aren't taught about clinical symptoms of them as I had to diagnose myself when TSH was 100, after a phone call from GP to tell me my blood test was fine and there was nothing wrong with me!

JGBH profile image
JGBH in reply toshaws

I find it incredible that so called doctors are still unable (unwilling?) to understand that clinical symptoms should be noticed… They always seem to ignore or dismiss them, finding all sorts of excuses so as not having to investigate problems.

shaws profile image
shawsAdministrator in reply toJGBH

This is my experience:-

GP phoned to tell me "your TSH is too low - T3 too high and T4 too low".

I know doctor that's how it should be as I take T3 alone.

GP "but T3 converts to T4". "No doctor that isn't right - it is T4 that converts to T3 and as I don't take T4 my T4 will be low.

JGBH profile image
JGBH in reply toshaws

Yes, I know… nothing changes. Always left to the patients to fight for help and treatment!

xeena profile image
xeena

This was so interesting - so much that i could relate to - i just wish i could show this to my GP as she is not treating me for my pernicious anemia now - in fact i never see or hear from any one at my surgery. Thank you for putting this video on here - i hope it helps everyone who is suffering in all of these ways - i will keep looking and try to work through what i should do about my condition - thankyou shaws.

shaws profile image
shawsAdministrator in reply toxeena

You have to insist that your doctor gives your B12 injections regularly.

You can develop other more serious conditions if you don't get sufficient B12 injections.

xeena profile image
xeena in reply toshaws

Thankyou for the message Shaws - the GP just ignores me. I had an eye appointment at Moorefields Eye Hospital on the 22nd of June as my sight is deteriorating with glaucoma - i am supposed to have drops from the GP but as of yet i have not got them - the consultant at Moorefields told the GP that i have pernicious anemia and she has to give me B12 - loading doses of six first and then every other week for six months and also give me eye drops as my eyes are watering so badly - the consultant told me that the b12 is needed for the optic nerves - i told him i knew that and i had previously told the GP but she said i do not know what i am talking about. My eyes have suffered badly since i moved house and to this GP surgery (four years ago) and so has my general health. I have been under Moorefields since i was born as i had a cleft lip and other things wrong with me at birth and have always been a rather sickly child - i have read a lot about cleft lips and the like and that in itself causes B12 problems. I have rung the surgery again today to see if i can get the drops but she is not there and will not be in until next Wednesday and they say no one else can help me - so i will try her next week and see what she has to say - i am at my wits end. I am stuck indoors - i do not see anyone and i cannot go out as my council housing people will not let me have a mobility scooter - so i am about to commence battle with the council now. Have a nice weekend and stay safe.👍😀

shaws profile image
shawsAdministrator in reply toxeena

I think you should also see your local member of Parliament and tell him/her of your predicament.

Make an appointment with the MP to discuss your case a.s.a,p.

I'm sure The Council cannot prevent you having a mobility scooter and definitely see your MP first. I think their decision would be on your side.

xeena profile image
xeena in reply toshaws

Hi there Shaws - sorry i have not been on so much as my eyes are getting worse and today i had to ring the surgery because i feel faint and my eyes are hurting and i am very sweaty and giddy - so i rang the surgery to see if the doctor would come and see me - she rang about two hours later and said she will come at midday tomorrow and i also told her that i was at Moorefields eye hospital on Monday and they said i must have B12 as my eyes are getting worse - she said i cannot as i do not have B12 deficiency and i said to her that the Consultant i saw said i have and that it has to be treated - i had a blood test last October in which it states from the hospital who done a full blood test that they were to make contact with the patient - i only found out about two weeks ago when i requested a copy of my blood tests - but she still insists that i do not have B12 and i said my eyes are hurting and very wet but my eyes do not tolerate any drops - i have had enough now - i only had one vacine for the virus and i have been looking on Amazon for some B12 as i do not know how to order the injections from abroad. What makes my mind boggle is the fact that they say i have pernicious anemia and should be on three monthly injections for life in one breath and then deny it in another - i have never yet had one - surely B12 and pernicious anemia are one and the same. I have had enough now and when you are on your own and trying to stand up for yourself with no help - it makes me lose all hope. I cannot even go out as i am disabled and still fighting with the housing people as well as the doctors. I do hope that you are getting stronger and that you will keep well - thank you for replying to me - i am just so sorry that i did not see it sooner - god bless and stay safe.xx

041051 profile image
041051

I was diagnosed with PA 44 years ago. I was so lucky because I had given birth to my son 9 months previously and on returning to the blood donor session locally I was told that I couldn't donate blood and I needed to see my G.P. My G.P. referred me to a local womens hospital (we still had them then) and I was seen the following week. Unfortunately, my blood test results had disappeared so I was given an appointment for a months time when they would hopefully be available. My G.P. had asked me to return to the surgery to let him know how I had got on. I was tempted to wait until I had seen the consultant but I didn't, I went a couple of days later. When I told the G.P. what had happened he picked up the phone and told whoever he was speaking to that if I had to wait a month I would be dead before then. I was seen the following week and after doing the Schilling test I was diagnosed and treated. Prior to this happening I had literally been crawling around on the floor because I couldn't get up, I was so tired but couldn't sleep at night and I'm sure there were other symptoms that I have forgotten. I guess the medical profession at the time had put this all down to post natal depression, although that wasn't really talked about then. I discovered later that my paternal grandfather had died in 1939 from stomach cancer. It makes me wonder if he had PA but I don't think anyone knew about it then.

shaws profile image
shawsAdministrator in reply to041051

I'm sorry your grandfather died from stomach cancer and wouldn't be surprised if it was due to undiagnosed P.A.

P.A. was discovered in 1895 and called Addison's anaemia or Biermer's anaemia.

041051 profile image
041051 in reply toshaws

I worked with someone in the early 1980's and his mother had had PA. It wasn't diagnosed and he was surprised that I had been and that I was receiving treatment. His mother had died 8 years previously so it did make me think about how lucky I was that I had been a blood donor.

Nellity profile image
Nellity

Thank you so much for posting this video. Watching it has raised enormous red flags about some current symptoms, not just for me but also my children. I will be getting us tested for B12 deficiency.

Localhero profile image
Localhero

Thank you for posting this shaws . This, plus the story of your mother’s death is absolutely horrific.

I’ve often wondered if I might have an issue. My blood tests always come back high because I supplement. I’ve been supplementing B12 for years. Used to be vegetarian and someone told me I needed it at that point because I wasn’t getting it in my diet. I’ve never dared to leave off taking it for more than a week or so, because, whether it’s my imagination or not, I begin to feel more tired without it.

Do you know if I could nevertheless be tested for an underlying issue? I’d do it privately because, as I’m sure you’ll appreciate, I doubt I’d get any sense from my GP.

ITHY profile image
ITHY

32:06 I took 'Centrum' is mentioned in the text, should that not be 'Sintrum', the blood thinner?

siddooo1 profile image
siddooo1

My Mother has Pernicious Anaemia, her blood issues were ignored by the GP and hospital consultants, she ended up in hospital with damage to her spinal cord, due to lack of B12. By the time she was admitted to hospital she was also showing signs of severe dementia. Luckily, this disappeared when she was treated, however, her mobility is severely restricted.

raglansleeve profile image
raglansleeve

If only we could force every doctor in the world to watch that! My jaw was on the floor several times and I now understand so much more of what has happened to me over the years. And I'm now even questioning my hypo diagnosis. I was deemed sub-clinical and started on meds at the exact same time that my B12 deficiency was discovered. Do I just need more B12, rather than thyroid supplements?

shaws profile image
shawsAdministrator in reply toraglansleeve

You may well need B12 injections so definitely check with GP to retest you and ensure you do not have P.A.

Clogger profile image
Clogger

Gosh, I can't believe what the individuals and families had to go through. I wonder how many people are dismissed as having dementia, or any other debilitating progressive neurological disorder, when it is a B12 problem, or children that you read about with unknown progressive symptoms? I was reading about 2 siblings recently who both had an unidentified neurological disorder. It makes you wonder whether B12 has even been considered.

shaws profile image
shawsAdministrator in reply toClogger

It would not be surprising to find out that some autoimmune conditions may be by-passed by doctors who're completely unaware of symptoms. My mother died due to her GP telling her that she needed no more B12 injections as her bloods were 'fine'. Both my sister and I thought that was 'good'but were completely unaware that if once diagnosed we must have frequent B12 injections which enable us to remain well and not develop other more serious conditions.

I underwent an operation to 'remove a "web" from my throat and was told I'd probably choke if it wasn't removed. After op the professional didn't come to see me - which they usually do and it wasn't until the following week he told me I didn't have a 'web'. Well what was on my barium swallow then - he couldn't answer and it wasn't until I was finally diagnosed as being hypothyroid I assume it was actually a swollen thyroid gland on the barium swallow.

siouxbee19 profile image
siouxbee19

I'm so glad I found this! I was just diagnosed with B12 deficiency a few days ago & will start treatment tomorrow.

After watching this video, I am filled with many different emotions...sadness, anger, relief, shock, etc... How can something so damaging, yet so easily tested for and treatable early on go undetected?

I think it should be a mandatory blood test at checkups, especially for those with risk factors, the young, pregnant, elderly.

I have so many of the conditions mentioned in this video, I feel just like the lady at the end, often chalked up to aging (onset in my 30's, I don't consider that old), anxiety, female issues, all in my head, I could go on & on.

I thank you for posting this, I'm going to shout this from the rooftops so to speak, more people need this information!

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