Keep taking the tablets!: I've just... - Pernicious Anaemi...

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Keep taking the tablets!

topazrat profile image
topazrat
β€’23 Replies

I've just been down to the G.P. for my freebie B12 jab. (s.i. at home weekly) I told her that I've been feeling really tired lately, like I did before my P.A. diagnosis, when I was very anemic. So she says, ah, go and buy some B12 tablets from the chemist, that will make you feel better! Cue the lecture about how people with autoimmune P.A. won't get much, if any benefit from taking tablets. Tried pills before I bit the bullet and started to s.i, as the 3 monthly NHS regime left me on my knees - they didn't work!

I told her I need iron tablets, not B12 tablets, as my Ferritin and HB are on a slow downward slide and have been for years. No, no, she says, they're still within normal limits. Well they are - just! I despair sometimes. Why wait until they are off the bottom of the range when there is obviously a problem and treating it would make me feel so much better.

In the meantime, I've put myself on gentle iron and indulging in liver pate and liver sausage on a regular basis to try and get my Ferritin somewhere decent, as its now down to 33.

OK, rant over, I'll just crawl back under my rock now and eat pate on toast πŸ™‚

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23 Replies
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Helliborous profile image
Helliborous

Hi topazrat, I have been using Better you sublingual iron, I don't think it's helping much but will know soon as I am having bloods done next week. My last ferritin Dec 23 was only 11 and the GP said satisfactory. I am really tired have lots of headaches my hands are always freezing cold and I have restless legs, she knows all this so I don't know what you have to do to get some help. It's looking like I will have to pay Β£700 for an infusion done privately. It makes you so angry when you know we have to source our own B12 injections, syringes and needles as well. That's my rant over as well. Hope you enjoyed the pate on toast πŸ₯΄

topazrat profile image
topazratβ€’ in reply toHelliborous

I've never heard of sublingual iron - I'll have a Google πŸ™‚

My Ferritin was 5 before my diagnosis and they STILL wrote satisfactory on my notes! But as my hb was only 7, they thought they should do something about it. Ferritin went up to 66 after a course of iron tablets from the Doc, which still wasn't great, but they just left it and its been drifting down ever since!

As I'm on antiplatelets and have numerous autoimmune conditions, you'd have thought they'd keep on top of it, but no πŸ˜’

Yes, the pate was lovely thank you, although Doc says its bad for my cholesterol. Can't win sometimes, can you. πŸ˜†

Narwhal10 profile image
Narwhal10β€’ in reply totopazrat

My Ferritin was 5 before my diagnosis and they STILL wrote satisfactory on my notes. ( Excuse me whilst I bang my head on the wall ).

So, you talk about Iron Deficiency Anaemia and you are recommended oral cobalamin. Wrong diseases/conditions. topazrat, I had to explain the difference between endoscopy and colonoscopy to one Health Professional. It may be that this is the level that we are working at.

You know what you need. Gentle iron, enjoy your pate and sausages.

I bet your GP gets a bit of money for prescribing statins for high cholesterol though. πŸ˜‰

topazrat profile image
topazratβ€’ in reply toNarwhal10

Oh yes, of course they get paid for statins, and lots of other medications, and treatments/tests, but not for P.A, which is why we tend to get ignored - no money in B12!

deniseinmilden profile image
deniseinmildenβ€’ in reply toNarwhal10

Ooooh, crikey!! πŸ‘€

(Said through clenched teeth, whilst doing kegel exercises! πŸ˜‚)

Nackapan profile image
Nackapanβ€’ in reply totopazrat

I had that problem.Started eating liver and more red meat to raise my ferritin.

Cholesterol rose.

Then tried less saturated fat .

Scalp went so dry snd itchy .

Try snd solve one thing and create another problem.....can't win !!

I take a maintenrnce dose of iron now.

Spartone

Solgar gentle iron

Ferrous fumarate 210

Alternating

To see what April bloods say.

My ferritin only dropped to 29 but I wax symptomatic at that level.

Hitting 48 I was okay. Only got it to about 58

My daughters waxs 7 then 9 and ignored..

She had more symtoms ftom low folate ( after b12)

Needs daily folic acid.

Our HB s dropped but still in range.

All our bodies functiin at different levels.

I really don't understand if ferritin tested and is ouf of range its not acted on.

I know iron is complex and looked at together.

I've never managed to get an explanation from my G.ps

But when ive asked them, told them of symptoms in the past .

Theve prescribed iron.

I've always had to ask / question ??

As for cholesterol I get texts with a link to healthy eating .

Again some say ratio is the most important figure .

Others say total.

Again genetics not all diet .

I have always eaten well.

Same diet as husband without all the mayonnaise!

His total figure is 4.9

Mine has never been that !

Never had to scrutanisd everything so much .

So tricky isn't it .

I think 'Better You 'do a iron spray ?

Narwhal10 profile image
Narwhal10β€’ in reply toNackapan

My daughter’s was 7 then 9 and ignored.

A computer generated algorithm sends you texts for cholesterol with a link to healthy eating.

Last night, I was listening to an obstetrician talking about how pregnant women were ignored during COVID. Albeit, it was with respect to vaccinations. β€˜THEY’ had dehumanised one of the most vulnerable groups.

The biggest problem then is the aftermath. topazrat does state why wait until results are bottom of the range ? Money is more often than not the answer.

Technoid profile image
Technoidβ€’ in reply toNackapan

"Again some say ratio is the most important figure .

Others say total. "

Ratio is fairly useless. Total is somewhat more useful but not great. LDL-C is a bit better. ApoB is the most diagnostic of risk.

Nackapan profile image
Nackapanβ€’ in reply toTechnoid

ApoBNot heard of that

Thanks

Technoid profile image
Technoidβ€’ in reply toNackapan

The abstract is a good summary

Apolipoprotein B Particles and Cardiovascular Disease: A Narrative Review

europepmc.org/article/pmc/7...

Jillymo profile image
Jillymo

Maybe a trip to the vets is warranted. They seem to understand the logic of a B12 deficiency & the need for ferratin ! I told my Dr I would get better treatment at the vets she wasn't amused.

It's enough to make anyone want to rant. 😑

Anybody would think it was πŸš€science.

JanCymru profile image
JanCymruβ€’ in reply toJillymo

Hi Jillymo, you are so right! Trip to the vets is likely to result in a far better understanding of B12 and Ferritin etc. I'd be happy to hop up on the vet's table, but I'll draw the line at where they might want to put the thermometer!

Jillymo profile image
Jillymoβ€’ in reply toJanCymru

I totally agree on that one. πŸ˜‚ 🀣

πŸ•πŸŒ‘

MoKayD profile image
MoKayD

I had the same problem with tiredness despite regular B12 injections. Started taking Spatone semi regularly and energy level is back up. I prefer liverwurst on white bread with yellow mustard, yummy!

topazrat profile image
topazratβ€’ in reply toMoKayD

Sounds very tasty πŸ˜€

JanCymru profile image
JanCymru

Had the same conversation with the GP I saw about 2 months ago for my blood results - ferritin at the lower range, but still regarded as ok and no additional supplementation. I now have B12 jabs at surgery once every four weeks after nearly a year of 'begging' and drawing their attention to the NICE guidelines regarding neuropathy, but to no avail.... Was told 'it's just a vitamin, if you want more you can buy it cheaply in the chemist next door' - How can they be qualified at GPs and still spout this opinion and lack of understanding about PA. Now I'm ranting too!! πŸ˜‚

Narwhal10 profile image
Narwhal10β€’ in reply toJanCymru

At last you can have 4 weekly injections, JanCymru. πŸ˜…

It is quite simple, AstraZeneca are up +111.68 (1.12%) today on the Stock Exchange.

Yesterday, I had a very interesting conversation with a 5th year medical student. Most of her fellow students did not actually want to be doctors. (Lacked the compassion whilst they did). They just choose between law, politics, medicine and engineering. The person I was speaking to was one of the only people who had not been to public school.

The person, like topazrat, gave a lecture. They told their peers, Just get over yourselves. I will take the vet’s thermometer and swap it for a silver spoon. I have no problem shoving that where the sun does not shine. On whom ? Well everybody gets ill even rich people.

A string of pearls and a set of scrubs is a major faux pas. Anna Wintour would have a field day.

🀣

EllaNore profile image
EllaNore

Ugg Topazrat! So infuriating. So sorry they refuse to look at your slightly high and low results. I don't get that. it is a sliding scale, too far one way or the other, the worse you feel. why question us? I don't get it. I wish I had something useful to offer. Just a hug is all I haveπŸ«‚, and to wish you the best. πŸ«‚

Mixteca profile image
Mixteca

Have you had a full iron panel done? You may be better off having an infusion, depending on results of course.

topazrat profile image
topazratβ€’ in reply toMixteca

Nope, Doc says that a ferritin of 33 is fine and won't do any more testing, let alone order an infusion.

Mixteca profile image
Mixtecaβ€’ in reply totopazrat

Not fine at all, GP hasn't a clue. Private testing and treatment if necessary's the only way forward. I had a significant iron deficiency and an infusion when mine had dropped to 30. Only a full iron panel will give you that info.

Nackapan profile image
Nackapan

You can get ferrous fumarate 210 otc. I alternate this with spartone and solgar gentle iron

topazrat profile image
topazratβ€’ in reply toNackapan

I've been taking the gentle iron for a while now and I'm eating more iron rich foods. My hair seems to be falling out less, so 🀞its doing the trick.

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