Has anyone with confirmed P.A. seen an Endocrinologist ? and was it any use ?

[Barry1955]

Hi all,

just a quick request, my G.P. is arranging an appointment to see an Endocrinoligist.

GP gave me ( reluctantly ) 5 jabs over 5 weeks as loading dose ( last jab on 11/01/17 ) went back on 31/01/17 for result of 2nd IFA test, hoping to get correct alternate day treatment for PA with neuro symptoms, but Gp still does not think I have B12d/Anaemia ! I told him PA is not a blood disorder and Neuro symptoms can precede blood abnormalaties by several years. He said wants to look further into cause of PA, admitted I am symptomatic but ignored my request for recommended B12 injection frequency. I told him I may have to self treat in that case.

Has anyone out there had experience of seeing an Endo, and if so, what was the outcome ?

Many thanks.

[Foggyme Administrator]

Hi Barry1955.

Good grief...your GP goes from bad to worse.

You have PA...your GP won't treat you...the quickest way to get that sorted is to join the Pernicious Anaemia Society and ask Martyn Hooper, the founder and Chair, to intervene on your behalf (he often does this, and with good effect). Best to telephone and leave a message on the answer phone - Martyn always rings back but it may take a day or twoif he's out of the office.

Not sure why your GP is sending you to an endocrinologist. They treat conditions caused by hormonal imbalances, the main two being diabetes and thyroid disorders.

Because B12 is needed throughout the the body, a range of specialisms can be involved in the care of people with pernicious anaemia, depending on what symtpoms and problems are experienced.

So...a haematologist may involved (the aneamia element), or a neurologist (if neurological symptoms are present and not relieved by B12 injections), a gastrologist - usually people with PA undergo endoscopy so that the stomach can be inspected visually and biopsies taken)....and so on.

Some people with PA also develop hypothyroidism, in particular, Hashimoto's thyroiditis, and if your GP suspected you had thyroid problems he may refer to an endocrinologist - but an endocrinologist would not usually be concerned (or interested in) pernicious anaemia.

So...really not sure what your GP is up to.

Suggest your contact Martyn Hooper on the case...best route to quick action....especially as you have neurological symptoms and need treatment to commence sooner rather than later.

Good luck...think we'd all be intrigued (in a horrified kind of way) to see what happens next 😖

👍

[Barry1955 in reply to Foggyme]

Hi Foggyme,

I have recently joined and spoke to Martyn a couple of days ago for advice. He advised seeing a different GP stating the P.A.S. had told me to get a 2nd opinion as I am not getting the correct treatment, ( Martyn was speechless when I mentioned the Endo ) ( had to read my 1st post, couldn`t remember the word)!

Made appointment for 13th Feb, online, attached reasons for appointment in notes box, so will see soon!?

Watch this space !

[Foggyme Administrator in reply to Barry1955]

Yes...have to admit I was a bit astonished about the endocrinologist...what a horrifying lack of quite basic medical knowledge.

Good luck on the 13th...the space is watched 😄

[Sleepybunny]

Hi Barry,

Good luck with your appt. I saw all sorts of specialists including rheumatologist, endocrinologist and several neurologists and only one of them, a neuro, had reasonable knowledge of b12 deficiency.

At least if endo runs more blood tests, other possible conditions might be excluded . Might be worth you posting on Thyroid Uk forum about what thyroid tests endocrinologist could do. Marz on this forum knows about thyroid problems, may be helpful to search for her posts.

Can be hard on NHS to get more than a TSH test. Endocrinologist might be able to order an MMA and homocysteine test but as you are already having b12 treatment the results for MMA/Homocystiene could be affected.

Do you have any gut issues? If yes, has GP considered a referral to a gastro enterologist?

"admitted I am symptomatic but ignored my request for recommended B12 injection frequency"

Was your request in writing?

My experience is that GPs sometimes take more notice of written requests. Letters to GPs, I believe have to be filed with medical records so are a permanent record of issues raised.

Link about writing letters to GPs about B12 deficiency. The person who runs website can be contacted by e-mail.

b12deficiency.info/b12-writ...

I include references/quotes from BSH Cobalamin guidelines in letters to GPs about B12 deficiency.

b-s-h.org.uk/guidelines/ click on box that says "Diagnosis of B12 and Folate Deficiency" should be on page 3 of listed guidelines.

Flowchart from BSH Cobalamin guidelines

stichtingb12tekort.nl/weten...

"advised seeing a different GP stating the P.A.S. had told me to get a 2nd opinion"

"He said wants to look further into cause of PA"

Perhaps he'd like a copy of Martyn Hooper's book "What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" or he could look at the section on PAS website for medical professionals.

pernicious-anaemia-society....

Has he seen this BMJ B12 article? My GP was quite interested in this, think they trust what BMJ says.

bmj.com/content/349/bmj.g5226

Hope you get to see a different and more helpful GP soon.

[Barry1955 in reply to Sleepybunny]

Thanks Sleepybunny.

I was diagnosed with Diverticulosis a few years back, due to IBS symptoms.

Yes, my request for correct treatment was in a letter which asked why Practice did not do loading as per guidelines, and included BNF/BMJ/BSH/NICE/Patient.co.uk guidelines for treating PA with neuro symptoms.

Gave GP my copy of Martyns latest book, which he said he would read ( ? )

It`s been 4 weeks since last of weekly loading jabs, could be another month or two before see Endo, so if no agreement from second GP, I`m definitely going to self treat. I`m not prepared to risk further nerve damage, even if my Doctors are.

ATB