had b12 results and called in to disc... - Pernicious Anaemi...

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had b12 results and called in to discuss

Delilahmy profile image
34 Replies

hello… I’ve just had my b12 levels done and they are >2000 (range 200-900)

I started my supplement with oral b12 and decided to trial SI after much reading as very symptomatic and matched myself to possible b12d. I have been hypothyroid for app 32 years and am on Levothyroxine t4 and more recently last summer started T3. At this point I had been off work as a nurse for a year and desperate to sort my symptoms. I was diagnosed t2 diabetic now on metformin and then sleep apnea last year and now on cpap. I have had low vit d which is now raised on supplements. Any help would be much appreciated as I am expecting some resistance as I anticipate the doc recommending not to supplement. I have felt cognitive benefit and after a year of feeling dreadful this was a great move forward.

many thanks for reading this long post….

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Delilahmy
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34 Replies
Nackapan profile image
Nackapan

I don't think your Gp should be concerned one they know thr cause for the high b12 level .If thd b12 injections are improving your symptoms why not carry on.

High levels on b12 injections 💉 expected and known to be safe.

Wonder why tested?

Not needed once on injections

Good luck

Delilahmy profile image
Delilahmy in reply toNackapan

Thankyou Nackapan I feel like the doctor will be very against it and that I will have the conversation justifying myself …. Half expecting that he will say it’s no good ….. but i want to go prepared to defend my use and all info helps…. Although I will carry on as the benefits are like night and day. But Thankyou just need to get thyroid levels metformin and ramapril etc working in tune ….. it’s a hard juggle but see glimmers of hope with b12 ….. and of course the help here …,

Nackapan profile image
Nackapan in reply toDelilahmy

Yrs. Difficult.Shouldn't need to justify self help.

He/ she will ve pleased a reason for elevated b12 levels.

I would just approach it saying a trial as symptoms so bad .

We shouldn't have thus stress seeing doctors .

Give 5 worst symptoms that have improved.

Then ask

I wonder why b12 helping 🤔

Nothing else seems to.

I often ask obvious questions.

They can answer.

Then move on to mention PAS have useful information.

Just ideas .

Hope it goes well and you get support not criticism.

Delilahmy profile image
Delilahmy in reply toNackapan

good ideas …. Thankyou …. But yes it’s mad that I am feeling stressed about it and first thought is that I need to justify it. It’s quite weird to think that I wouldn’t look to trial something when the doctors had a year to put ‘me on the right course’ that I would be looking for answers myself. When I first watched the Sally Patchlock b12 I kept seeing myself …. My initial reason to try it …

Treesong2023 profile image
Treesong2023 in reply toDelilahmy

I am always anxious and tense when i see my GP as he just seems to want to talk away what I am feeling like. So, it feels he's not on my side. So, i get what you mean in terms of his. / her ...displeasure..? I dont like confrontation so I in the past I let things go...and got worse. Now I am becoming my own health detective. I am talking to an Endo soon and aim to use him as my advocate. Plus I am toughing up! Wishing you well.

Delilahmy profile image
Delilahmy in reply toTreesong2023

Thankyou Treesong …. It’s so difficult and should be so different ….. we should be encouraged and supported when we are actively trying to solve our own health problems. If I was getting my car fixed I’d want to know I was getting good service and expect more from my doctor …. Good luck to you too …. Good luck to us all …..

wedgewood profile image
wedgewood

Metformin will deprive you of B12 . , but self-injecting with B12 will correct that . But tablets will not.

If you have felt the benefit of self injecting B12 , keep it up. Doesn’t your doctor know that Metformin depletes vitamin B12 ? ( there is other medication that does the same )

You cannot overdose on B12 , so don’t worry about that !

Best wishes .

P.S. Ideally get rid of Diabetes with diet , then you won’t need Metformin !

Technoid profile image
Technoid in reply towedgewood

Agreed on diet and type 2 diabetes. Here is a talk from someone with type 1 diabetes who was able to control his diabetes and dramatically reduce his insulin use by following a whole food plant-based diet. He has a Phd in nutritional biochemistry.

m.youtube.com/watch?v=5KWAg...

There are probably many other diets which can be effective with Diabetes if adequately planned but you might gain some insights from the talk.

masteringdiabetes.org/

Delilahmy profile image
Delilahmy in reply toTechnoid

Thankyou Technoid I’ll have a look tomorrow … much appreciated

Technoid profile image
Technoid in reply toDelilahmy

Just to add my 2 cents that I am skeptical of the blanket "all oils are bad" message that he is pushing ; for example, a very recent systematic review and meta-analysis found that:

"Olive oil consumption was associated with a 22% lower relative risk of T2D (Type 2 Diabetes"

ref : sciencedirect.com/science/a...

On saturated fat I think the signal is much clearer but its much less so with poly and monounsaturated fatty acids which mostly show benefits if used in limited amounts.

But with something like diabetes, obviously oils are not by any means an essential food so if other changes are not having enough impact, it may be worth testing cutting out oils to see if that does improve blood glucose stability/insulin sensitivity.

He doesn't really go into the nutritional considerations of a WFPB diet and there are some serious ones that require attention to supplementation/proper diet planning. Having fallen afoul of this myself in the past, I've looked into this extensively so I can provide advice on that if its something you're considering.

Delilahmy profile image
Delilahmy in reply toTechnoid

thanks again Technoid

Nackapan profile image
Nackapan in reply toTechnoid

My husband has typd 1 diabetes .Had a similar diet anyhow. .

I'm sceptical that trying g too long with such diets in thd extreme can lead to permanent organ damage ad the suffered starts to shut down.

Lose excessive body weight and brain simply stops working properly.

As my husband was not in a 'normal ' age range for type 1 diabetes he carried on making adjustments without much thought to function.

I tgd end it was me who worked out what was going on having seen a pet rabbit suffer.

His first blood sugar test at the doctors was 30.

They had no idea how he was still walking tk the train station ,leg alone working.

Seeing on am insulin pump in hospital he wax literally waking up lije coming out of a walking coma. .

Type 2 diabetes I'd s different matter and can be turned around with diet .

Delilahmy profile image
Delilahmy in reply toNackapan

Thankyou Nackapan … I’ve started to drop my carb intake and totally cut out sugar at the mo and trying to review foods

Nackapan profile image
Nackapan in reply toDelilahmy

Difficult. Hope it goes well

Delilahmy profile image
Delilahmy in reply toNackapan

Thankyou so much for your help …. This site is amazing 😃

wedgewood profile image
wedgewood

Apparently Dr Michael Mosley’s ( TV doctor ) book “The 8 week blood sugar diet” is excellent ! Local book shoor Amazon will have it

Delilahmy profile image
Delilahmy in reply towedgewood

Thankyou Wedgewood

Kapat1 profile image
Kapat1 in reply toDelilahmy

I can recommend the book Glucose Revolution by Jessie Inchaupse

Delilahmy profile image
Delilahmy in reply toKapat1

Thankyou Kapat1

Scott-rock profile image
Scott-rock

have you printed off the nhs and BNF guides to b12 deficiency, also information from the pernicious anaemia society that list the medications which cause deficiency?

Then you will have some evidence that metformin is one of them. To show the doctor.

Delilahmy profile image
Delilahmy in reply toScott-rock

I will do that I was thinking of trying to find something and that’s a great idea then if I leave them with them they can have a look …. And discuss if they are receptive …. I will probably have to squeeze it all into 10 mins so printing it is a good idea ….. thanks so much

Sleepybunny profile image
Sleepybunny

Links about metformin and B12 deficiency (UK)

gov.uk/drug-safety-update/m...

nhs.uk/medicines/metformin/...

pulsetoday.co.uk/news/clini...

diabetes.co.uk/news/2018/no...

Delilahmy profile image
Delilahmy in reply toSleepybunny

Thankyou Sleepybunny I’ve copied and pasted the links …. Will print off and read x Thankyou so much

Bellabab profile image
Bellabab

I was diagnosed as having type 2 diabetes and bought a blood test machine. I discovered the Newcastle Diet and in just a few months was diabetes free. My HbA1c is still fine after 5 years. Suggest get B12 status level before starting on the diet is you decide to do it.

newcastle-study-600-calorie-diet.html

Delilahmy profile image
Delilahmy in reply toBellabab

Thankyou Bellabab I’ll have a look x

WiscGuy profile image
WiscGuy

You mention that you want to go in to the doctor prepared to defend treatment with B12 injections. Presumably if the doctor were aware, you would have no need to defend your treatment. If you wish, do the following:

Open a computer browser and in the search box enter

scholar.google.com

When Google Scholar opens, enter the following, or something similar, into the search box:

B12 deficiency Levothyroxine

You will see a listing of many medical journal articles linking B12 deficiency with Levothyroxine. For most, you will be able to see only the article abstracts, summarizing each study. You might print out two or three of the abstracts to give to the doctor, or to defend you request for appropriate treatment.

Open Google Scholar again, and enter search terms:

B22 deficiency metformin

You will see articles correlating metformin with B12 deficiency.

Review the articles and print abstracts as above.

Go to the Pernicious Anemia Society list of B12 deficiency symptoms.

pernicious-anaemia-society....

Copy, or type, etc, all of the symptoms that you are experiencing and take your list of symptoms with you to the doctor.

Go to an article called "The Many Faces of Cobalamin (Vitamin B12) Deficiency."

ncbi.nlm.nih.gov/pmc/articl...

At top left, click on PDF to get a good format for printing, and print it.

Go to:

Case Descriptions

Patient A

Also, Patient B, and look for the following: "Because of our clinical suspicion of vitamin B12 deficiency, she was treated with hydroxocobalamin, 1000-μg injections twice weekly, with a beneficial effect on her symptoms..." The point is that, regardless of pertinent test results being within the reference range, when B12 deficiency is suspected due to symptoms, the patient should be started on a trial of B12 injections, no less than one per week, and preferably twice a week or every other day, for two months, at which time severity of symptoms should be compared to symptom severity at the beginning of the trial. Keep in mind that B12 injections are not toxic at any level.

Also, Patient E

Also, Patient F

Go to heading, Discussion, and read it, highlighting pertinent sections.

Go to section, How Should Treatment Be Given?

Look for the following:

"In case of neurologic symptoms or abnormalities, it is suggested to administer hydroxocobalamin, 1000 μg once or twice weekly for a period of up to 2 years...".

These things should prepare you for informing your physician of things pertinent to your treatment.

Delilahmy profile image
Delilahmy in reply toWiscGuy

Thankyou so much Wiscguy such amazing information and thanks for taking the time. The site and the people here are soooo knowledgeable and supportive. You’ve basically showed me step by step how to find information from great resources … I didn’t know about Google scholar … I will be doing this today and hope to have some printable and we’ll referenced info to take and back me up. I’m certain b12d is a contributing factor for multiple symptoms and undiagnosed illnesses …. That it’s overlooked … the more I read the more information I see (and well referenced and evidenced) ….. how can we scream this from the rooftops and convince doctors to hear this and update their practice. I am a nurse myself and have not really been seeing b12d considered in normal testing and usually when it is within range … it’s usually low end and not treated. Anyway I’m ranting sorry but Thankyou for the Google scholar and advice….. I wish I could do more to shout about it …. I am improving cognitively after many years of struggling and I put that down to b12 supplements and my now prescribed Liothyronine t3 for thyroid after years of asking and finally begging. ….. why is this so hard ….

Now retired after a year and a half of illness

Yervaud profile image
Yervaud

Please: what is the opinion of the group concerning folic acid dosage for EOD injections?

Delilahmy profile image
Delilahmy in reply toYervaud

I take methylated folic acid 5mg on injection days ….

Yervaud profile image
Yervaud in reply toDelilahmy

Thank you. And that would continue indefinitely? Is there a folic acid overdose issue ever?

Delilahmy profile image
Delilahmy in reply toYervaud

this is something I’m not sure of … maybe a separate question to the group will get more replies … if you repost I’ll try to follow to gain info too

Technoid profile image
Technoid in reply toYervaud

Yes, you can take too much folic acid. The tolerable upper limit is 1000mcg (1mg). 5mg is the dosage prescribed, short-term to quickly correct a deficiency. It is ~ 25 times the RDA.

It is not generally intended as a long term dosage unless your folate absorption is so atrocious it cant come up without it. Some papers have even suggested that too much folic acid can reduce active B12 which, although unproven seems reason enough to me to be very cautious with taking folic acid if you dont need it. Up to 400mcg is often taken and is the dosage recommended for women of child-bearing age to ensure folate sufficiency during pregnancy. Multivitamin dosages of 200mcg should also be safe long-term (but may not even be needed if your absorption is good and you eat a high folate diet).

Yervaud profile image
Yervaud in reply toTechnoid

Thank you Technoid. Very useful information.

Delilahmy profile image
Delilahmy

went to doctors yesterday Thankyou all …. Posted new post today re visit … you are all amazing

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