To jab or not to jab!

[topazrat]

I've been S.I. weekly for the last 6 months since my P.A. diagnosis because all of the G.P's at my surgery don't believe that symptoms can return within 3 months - even though I've explained that I have neuro symptoms and they should be darting me every 2! I had no loading doses, despite my protests because 'You don't need them and it would just be going overboard because your serum B12 is 250 and that is normal'. Even though I have a positive IF and Parietal cell test result.

I haven't yet told them that I S.I.

A new doc has started at the surgery who has an interest in auto-immune problems. I've managed to get an appointment with him on Thursday because even weekly jabs aren't improving matters as much as I would like, so I am wondering if there is another problem as well as the P.A.

My last jab was my 3 monthly one, 10 days ago. I'm now feeling like poo again, with all the symptoms back. I'm desperate to jab, but if I do I won't be as symptomatic by Thursday. If I don't, I will struggle to even get down to the surgery.

Logic says jab, because even if he does do a serum B12 (which is pointless) it would be high whether I jab or not.

I'm just having a wobble and need some kind words and encouragement from you peeps.

[Sleepybunny]

Hi,

I hope the new doc is helpful.

"even though I've explained that I have neuro symptoms and they should be darting me every 2!"

Have you considered writing a letter with symptoms , blood test results, extracts from B12 documents. Things said in a consultation can easily get forgotten but a letter is a more permanent record. In UK , I believe letters to GPs are filed with medical records.

Link about writing letters to GPs about B12 deficiency.

b12deficiency.info/b12-writ...

When you mentioned they should be "darting" you every 2 months, did GP check his/her copy of BNF (British National Formulary). Info is in BNF Chapter 9 Section 1.2

evidence.nhs.uk/formulary/b...

I sometimes wonder if I should take my own copy of the BNF to appts.

"am wondering if there is another problem"

Having one auto-immune disease can increase the chances of another one developing.

Have you had recent tests for

Thyroid disease?

thyroiduk.org.uk/tuk/index....

Coeliac disease?

coeliac.org.uk/coeliac-dise...

Diabetes?

diabetes.org.uk/

I am not medically trained, just someone who has tried for years to find out what is making me ill.

[topazrat in reply to Sleepybunny]

Yep, did the letter - didn't do any good. Yep, told them to look at the BNF - did no good.

I have asthma, eczema, psoriasis, vitiligo, reynauds. Tested inconclusive for Sjrogen's. Was diagnosed with diabetes 25 years ago, but because of the guideline changes, apparently now I'm not! Thyroid, they said was ok last year. I had a quick glance at the results and it said 4, but I don't know what scale or if that is normal. I'll discuss that on Thursday.

If there is an allergic reaction to be had - I'll have it. I've been admitted with an anaphalactic reaction to an antibiotic and a phototoxic reaction to a cholesterol drug. Plus other various rashes and swellings from other drugs, cosmetics, UV light etc, etc.

Not been tested for coeliac as far as I know, maybe that's another thing to add to my to ask list.

Saw a rheumatologist because of joint pain and skin rashes who said my ferritin was low but in range, same with all the blood count tests. Folate was high.

[Marz in reply to topazrat]

I would think that it was the TSH which was 4 - which is too high. Also not a reliable test - TSH - FT4 - FT3 & Thyroid anti - bodies should be tested for the complete picture. Rarely done and so many people continue to suffer.

thyroiduk.org

Raised cholesterol is a Hypo symptom as are many others you are suffering. Diabetes too can have a link as both are endocrine issues.

Hope you soon have some answers.

[topazrat in reply to Marz]

When I told Mum-in-law, who has thyroid problems that it was 4 she said the same, that it was high. But the previous G.P. said it was normal. So I'll need to bring that up on Thursday for definite.

[Marz in reply to topazrat]

Please look at the link I posted for you above. In the section - Understanding Test Results - it tells you with a TSH over 2 consider Hypothyroidism. Sadly Docs have VERY little understanding of thyroid results.

Normal is an opinion and not a result 😊

Always obtain copies of all your test results so you know what is going on. They are legally yours.

[topazrat in reply to Marz]

Yes, I did read it. I'm hoping that this Doc will listen to reason. Before now when I've asked for results, they have refused. I will have to find my inner Pitbull.

[Marz in reply to topazrat]

nhs.uk/chq/pages/1309.aspx?...

Data Protection enables you to have your results - the above NHS website explains. Also take a look at the Thyroid UK forum here on HU where there are almost 56,000 members - so lots of similar issues discussed daily ....

Having your results enables you take control of your health and to monitor your progress. I live in Crete - and we HAVE to take care of all our records/scans etc. Somehow empowering

[topazrat in reply to Marz]

Thanks Marz. I will certainly look at the thyroid forum on here. Ho-hum, it seems like I might be starting an auto-immune collection!

[Marz in reply to topazrat]

You will be in good company - I have Hashimotos and Crohns as well as a B12 issue

[Sleepybunny in reply to Marz]

links about access to UK medical records

nhs.uk/NHSEngland/thenhs/re...

england.nhs.uk/contact-us/p...

nhs.uk/chq/Pages/2635.aspx?...

"when I've asked for results, they have refused"

Did you submit a formal written request for access to your records?

I think requests for copies of records have to be signed off by a GP so they may need a few days to sort things out.

As far as I know, the only reason a GP practice can refuse access to your records is if they feel it may cause you harm. If this is the case, I hope they would at least tell you.

If you are refused access to your medical records and are not given a reason, it might be worth speaking to

1) MP

parliament.uk/mps-lords-and...

2) Practice Manager

3) Information Commissioner's office

ico.org.uk/for-the-public/

4) CAB

citizensadvice.org.uk/healt...

[Sleepybunny in reply to topazrat]

Did rheumatologist check for Lupus and Hughes Syndrome (also known as APS Antiphospholipid Syndrome)?

APS Support UK

aps-support.org.uk/about-ap...

londonlupuscentre.co.uk/hug...

[topazrat in reply to Sleepybunny]

Lupus, she said I was too old for. She was sure I had Sjogrens. The antibodies for both came back negative. She did a lip biopsy to check for Sjogrens, which came back positive, but not positive enough for a diagnosis according to their criteria. So she discharged me with no further action.

APS, I believe, was tested for when I had a query TIA a couple of years ago. They did all sorts of clotting blood tests - lots of tubes. But they all came back ok, as did an MRI and CAT scan of my brain and echo cardiograms.

[jillc39]

I would be inclined to try to hang on so that the new gp can see how poorly you get.

[clivealive Forum Support]

Hi topazrat unlike your doctors I'm not a medically trained person but what they say about your "P.A. diagnosis because all of the G.P's at my surgery don't believe that symptoms can return within 3 months - even though I've explained that I have neuro symptoms and they should be darting me every 2! " perhaps they should take the time to read the N.I.C.E guidelines which confirm what you say and maybe they will "hit the bull's eye".

google.co.uk/url?sa=t&rct=j...

Please also ask to have your Folate level checked.

I wish you well

[topazrat in reply to clivealive]

I think I would get more of a reaction if I hit them over the head with their precious BNF

[Cherylclaire Forum Support]

Do that topazrat and then blame "mood swings","irritability", "aggressive outbursts" or "irrational behaviour": all the symptoms that miraculously never seem to appear on any of their lists, but feature quite heavily on any of ours. The ones that make our partnerships and employment very difficult (not to mention specialist appointments ! )

It would be useful for the new GP to see you when symptoms cannot be denied or ignored, of course it would. Think of you though, because this can be a long process of waiting, specialists, blood tests, more waiting, not wanting to skew results, more specialists.. and you could be in a position where you are risking making yourself worse, perhaps irreversibly, just so their rather flawed tests come out properly. You already have a diagnosis of Pernicious Anaemia, you have neurological symptoms, - why does NO-ONE ever give an injection every other day until symptoms stop improving? The purpose of a maintenance dose is to maintain the maximum level of improvement it is possible to get, surely, not to maintain you at your worst -or worse still, fail to maintain even that level. Let's hope that finally you are going to see a GP tomorrow that will help you get better. He could turn out to be one of the good ones.

I finally got a diagnosis of Functional B12 Deficiency last October, but since there aren't any specific guidelines to follow on this, it seems that no-one wants to believe it -and are all doing their best to make it turn out to be something else. My GP picked up on this because 10 years ago, she had a patient with this condition and she wrote down notes on Methylmalonic Acid (MMA) test just in case it ever came up again ! It really is purely luck- wishing you bundles of it !

[topazrat in reply to Cherylclaire]

Haha if I thought I could get away with nutting them without being struck off, I would - maybe it would knock some sense into them!

I'm glad that you found a good G.P. I'm hoping that as this one has an interest in auto immune that he might not be so blinkered.

[Cherylclaire Forum Support]

Let us know, okay? Best of it, topazrat