Pernicious Anaemia Society

Ho-hum I feel another fight coming on

I was diagnosed with P.A. just over a year ago, and although I feel much better, I keep going back to my G.P. with tingling in my arms and legs, muscle weakness, swollen fingers, not sleeping well, only for them to say that it's either my P.A. or its all in my head.

All of this time I have firmly believed this to be a physical problem, not a psychological one. So, I stumped up for some private tests. Thankfully my thyroid function came back OK, but my vitamin D is low. So, I was advised to speak to my own G.P.

So, I rang up, no appointments for the foreseeable future (surprise, surprise) and it isn't urgent so I can't have a doctor's call back, you'll just have to wait for a routine appointment to become available!

I have a horrible feeling that they are going to dismiss me again. I could treat myself and then get re-tested, but I would much rather be under my G.P's care.

Why do things have to be so complicated - all I want is to feel better. Is that too much to ask?

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No, it is not too much to just want to feel better.

You are positive for Gastric parietal cell antibodies, correct?

There is an association between that and h pylori.

Ferritin can be fine in the event of h pyori as you are eating iron and b12 rich foods. However the body considers iron toxic in the event of chronic inflamation (h pylori) and segregates iron to ferritin for storage only leaving you with enough iron to maintain hemeglobin steady but nothing extra for energy.

If you have not been tested please do so even if only to rule it out.

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Yep positive for both I.F and parietal cells. Ferritin is 46, so low in the normal range, no anaemia now since starting jabs. I've never been tested for H pylori, but will certainly bring it up (excuse the pun) with the Doc tomorrow.

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Just to add, Ferritin was 5 before diagnosis in October 2016, so its going the right way now.

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VitD needs to be around 100 - and is a steroidal pro-hormone - also anti-inflammatory and every cell in the body has a receptor for D3 - so more than a vitamin. There are trillions of cells in the body so if the Vitd is low then there is not enough to go around all the cells !! The co-factors are Magnesium and VitK2-MK7 to ensure calcium goes to the bones and teeth and not remain in the soft tissues and the arteries.

Apologies if I have asked before - but have you had your Thyroid checked. Often low levels of Ferritin - Folate - B12 and VitD can be linked to Low thyroid and in particular Hashimotos.

Hope all goes well with the doc this morning :-)

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Yes, I paid to have a breakdown thyroid test plus antibodies. All was ok there. G.P. wouldn't do a breakdown because TSH was normal.

The vitamin D test is in the lower than 10 range according to the private test. Thanks for the co-factors advice - I'm sure my G.P. wouldn't have told me!

You know, I'm more nervous about this appointment than I was having a skin biopsy last year!

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Please be brave 😊 Sounds as if you need loading doses of VitD. Check out the NICE Guidelines before your appt. Each CCG have their own too. Ensure GP refers to them during your time.

If you have time do post your Thyroid results - private companies still have to work within Guidelines.

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THYROID STIMULATING HORMONE 3.04 mIU/L 0.27 - 4.20

FREE THYROXINE 16.1 pmol/L 12.00 - 22.00

TOTAL THYROXINE(T4) 106.0 nmol/L 59.00 - 154.00 FREE T3 4.6 pmol/L 3.10 - 6.80

THYROGLOBULIN ANTIBODY <10 IU/mL 0.00 - 115.00 THYROID PEROXIDASE ANTIBODIES 10.6 IU/mL 0.00 - 34.00

I've looked up the guidelines, so hopefully it will be ok. I'm just not filled with confidence, as I was told there was NO WAY that I had P.A. as my serum B12 was 250. After refusing to leave the Docs room until she ran I.F. and parietal cell tests, I got my diagnosis - both were positive. I just have to stand my ground yet again. It feels like deja vu lol.

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Your thyroid is beginning to struggle as indicated by a TSH over 2. Just keep an eye. Docs happy for you to be in range - no matter where 😊

Hope all goes well ...

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The TSH seems to be a rule unto itself. It fluctuates between 2 and 5, but still the docs are happy!

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That is why the FT4 and FT3 are more important - but rarely are both tested on the NHS. The Pituitary responds to levels of thyroid hormone in the blood - and secretes TSH accordingly. Have you seen the video on YouTube - The Holy Miracle of the Infallible TSH Test ? Very tongue in cheek - but amusing !

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No I haven't. I'm just out to the Docs now. I'll have a looksee when I get back :)

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Hi Topaz. So you're confirmed P.A. are you on GP injections for B12, if so, have you had the loading doses and then once a month or more often?

I think a lot will say you're needing more frequent B12 with the symptoms you explain above.

I'm coming down off 20 years of Lansoprazole and its day 6 ( I think lol); things are going well and until I get my bloods on Friday I've guestimated I'm more iron than B12 to begin with.

With that in mind I've been pushing on red meats, all fresh, more skim milk and a protein drink as well as better general nutrition.

Due to anticipating a rebound of acid from having a lot more HCL in my tummy, I have thus far gone easy on fresh fruits so only yesterday started on a kid's mutli vitamin which can be dissolved in the mouth with around 50% RDA of adults' Vit A, D and E.

Now, whether its just coincidence or not I don't know, but this morning I felt like a lump of lead even after my iron drink and then later a protein drink with tinned rice blended in.

I took my kids' vitamin and pretty much dozed off on the settee.

I woke 3 hrs later, and felt probably the best I have felt in over a year or more, almost to the point I felt giddy; I watched an episode of Family Guy and I laughed so much I started to worry lol

Anyway I've rambled; Vit D is so often overlooked by Us here in the, we don't get a lot of sunshine. I saw a news article a few weeks ago about how the NHS is spending millions on prescribing non-drug products that can bought cheaper over the counter.

Given GP's general behaviour reflected on this and other forums by members' posts, you almost get the impression they're trying to 'cause' people to go and self medicate and self treat lol

Anyway, if you wait for the GP service to sort you out, they'll be doing it posthumously methinks; go get a decent multi vitamin, get the oral B12 sprays too, and see how you go.

A liquid iron may help you but not always as some say they're ok for maintenance but not loading.

As so many experienced members point out, ALL the B's work together, and then they rely on other Vits and minerals to.

Give your body what it needs and trust it to juggle them and do what it wants to as it prioritises them I'd say.

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I've actually managed to get a cancellation to see a Doc tomorrow morning. And by pure luck it is the one who is the most likely to listen to me - result!

I self inject weekly, so I'm getting enough red bull :)

I take a good quality multivitamin a mineral supplement daily, and folate and blood count are good.

I suffer with polymorphic light eruption, which means that when I go out in the sun, I get a red, itchy, hot rash. So, the doc told me to cover up and wear sun block when I go outside. So between not getting much sun and having P.A. I'm sure that's what has caused the D deficiency. I guess they will take their own test and (hopefully) treat accordingly.

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Its 1.4 mg daily, so not too much. I've been light sensitive all of my life, so its not the B2.

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High homocysteine? Just guessing, not saying I know a lot lol

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Not had it checked, but it shouldn't be high after correcting the B12.

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But you're still getting neuro symptoms in the hands etc so maybe your B12 is still not enough?

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B12 deficiency is not the only thing to cause neuro symptoms. ;)

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I now self medicate with around 8000ui of vitamin a day with the cofactors. I had loading doses of vitamin B12 last year, but still felt awful, so went back to GP. My vitamin D was particularly low - 11, range 50-250pmol. I was prescribed loading doses of vitD of 20,000 twice a week for 7 weeks. It still only came to 83, whereas 100 is the optimum level. So I now take my own, after doing my own research, I found that it is more of a hormone than a vitamin and symptoms can overlap with other deficiencies, such as B12. I also have read that once you have been deficient you will probably have to continue to supplement to keep levels optimum. As Marz knows more about this maybe she could comment on the cofactors, such as vit k and how important they are. I'm a little foggy from resisting B12 supplements for a MMA test in a few weeks!

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PS a good brand is 'Dr Best' no nasty fillers etc.

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Well, I'm back and I was pleasantly surprised by how it went! The doctor had recently been on a seminar about vitamin D deficiency and was well clued up. She accepted my Medichecks result and agreed that I was very deficient (It was less than 10).

She has given me two different strengths of capsules. 3200iu a day for a month and then 800iu for three months. I'm to go back in two months to make sure that the symptoms are improving. I honestly think that if I had seen any of the other doctors, they would have refused to accept the results, and as they are not able to test vitamin D levels in my area, nothing would have been done.

So, I'm quite happy now - lets just hope that the pills don't any adverse effects!

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