Would going to an endocrinologist be helpful?

[treacletart33]

I have PA (was diagnosed over ten years ago), and my physical and neurological symptoms have been getting worse over the past 6 months. My GP referred me to see a haematologist but then yesterday I got a letter from the haematologist's dept saying that my referral had been rejected because the 2 monthly injections should be enough. I was extremely angry as I felt I have been struggling and struggling for a long time to get my GP to refer me to see a specialist. My GP said that current medical opinion was that I shouldn't need the injections more often and my PA was being treated correctly, perhaps I am heading towards chronic fatigue syndrome was her diagnosis and she has now referred me to see an endocrinologist...Would this be of any help d'you think?

[LouiseRoberts]

Possibly... have you ever had your thyroid tested...?

Are you having any other symptoms which may be considered to be thyroid related...?

thyroiduk.org.uk/tuk/about_...

Louise

Thyroid UK!

x

[treacletart33 in reply to LouiseRoberts]

I haven't had my thyroid tested. I am dizzy, disorientated, unable to balance myself properly, in a fuzz in the head, unable to think clearly, usually hot but not with a temperature, tingling in extremities. No weight gain or loss. And incredibly tired. I'm off work and have been for past 3 weeks with "extreme fatigue" put down to my pernicious anaemia. Need to go to the loo more often than usual over past 6 months, loose stools close to diarrhoea but not quite, every morning, cant eat bread as it bloats me up, but that's being going on for a long time. Skin itches and has done since I was 26. (Years ago). Thanks for your reply. x

[LouiseRoberts in reply to treacletart33]

I would suggest getting your thyroid testing. If you can't get your GP to do it, there is information on our website about some testing you can arrange yourself.

thyroiduk.org.uk/tuk/testin...

We have a list of NHS Endos who have been known to be a bit more open-minded.. drop me an email if you would like this list... [e-mail]

L

x

[treacletart33 in reply to LouiseRoberts]

Hi Louise,

Thank you very much for your reply. I will email you for the list thanks. I am waiting for the letter from my gp about the endocrinologist she is thinking of referring me to. Anything that could help would be very welcome. I just didn't think of my thyroid as I've been the same weight for over 30 years with not much change. But it just goes to show there is a lot out there that we don't know about.. thanks again. x

[LouiseRoberts in reply to treacletart33]

No worries - hope we can help in some way! x

[Gambit62 Administrator]

PA is an auto-immune problem - thyroid problems can be the same and, unfortunately, people often develop several.

What treatment are you receiving for you PA? The symptoms you describe are characteristic of PA as well as other auto-immune disorders. It may be that you need more regular injections - particularly as you are experiencing neurological problems.

[Mrs_Somerset]

Hi treacletart33,

as louise pointed out, PA is autoimmune and some types of thyroid illness are also.

I have Hashimotos ( a type of autoimmune Hypothyroidism) and PA.

But you can also get Chrons disease (autoimmune bowel disorder) - so your doc should test for that too.

Many people with autoimmune diseases are intolerant to GLuten. I am, it also bloats me up, get stomach cramps, cravings for sugar etc etc. I crave bread.

But I feel so much better if I can cut out gluten - there are many types of gluten free bread available at the supermarkets ro you could make your own at home. If you try going Gluten free for a few days ( don't just cut it out, you will need the calories, do replace it with something, need not be a gluten free version, but make sure you have enough calories and nutrients) and see how you feel.

They can test you for gluten intolerance, but my doc refused, as I came back negative fro chrons and coeliac - he said the rest I can manage on my own.

nce that is sorted, if you are on facebook, try the B12 facebook group - it has lots of useful info, including how to get your own supply of B12 - that is what I do - I have a shot every month and feel alot better for it.

wishing you a speedy recovery, Big Hugs,

M

[treacletart33]

Hi there, thank you everyone, I will look up the B12 facebook page it sounds very helpful and thank you for your replies. My treatment is a VitB12 injection every two months. My doctor says I don't need the injections more often as a recent blood test showed I have enough B12 in my system, but I thought that having the injections would give a false reading, my GP says not.

[Gambit62 Administrator in reply to treacletart33]

I think your doctor is wrong about the false readings - otherwise why would the advise be that you should be off any form of supplementation for at least 3-6 months before redoing tests. Could you ask to be referred to a haemotologist.

Also, what loading shot regime did you have - was it 6 shots over 2 weeks or was it one every couple of days until the symptoms stopped improving. it should have been once every couple of days until symptoms stopped improving.

[treacletart33 in reply to Gambit62]

Hi Gambit62,

Thank you for your reply. My doctor did refer me to a haematologist but then a doctor at the hospital where the haematologist is based rejected my referral, this happened earlier this week. The reason was that the 2 monthly injections should be enough if I am responding to treatment.

I didn't have a loading shot regime, the doctor who diagnosed me with P.A in 2001, left the practice before I got the results and the doctor I went to after just gave VitB12 injections every 3 months and then I moved from Yorkshire back to the Midlands and it was changed to every 2 months.

[Gambit62 Administrator in reply to treacletart33]

it is so frustrating. I just want to scream .... mind you today I think I just want to scream about everything ... surely you are the person who knows if you are responding to treatment - not someone who has never met you.

I'm not sure what the regimen was in 2001 so that may have been the standard then but it does sound as if it wasn't sufficient and isn't sufficient.

I gave up on my GP - don't know if I mentioned this - and started using a nasal spray - things improved tremendously for me in a very short time - but it does mean really high doses. If you try that you are likely to get GP fretting about overdosing to which the answer is that hydroxocobalamin is used at higher doses than I'm taking to treat cyanide poisoning.

My last visit to the GP (which was before the nasal spray - now about 3 months ago - I had to repeat at least 2x if not 3 that there wasn't any point in redoing the B12 whole serum test because I am receiving injections ... and the whole thing about it couldn't possibly be B12 because I am receiving injections. It's a treatment not a cure. People respond differently and ignorance+arrogance = one very pee-ed of Gambit

[treacletart33 in reply to Gambit62]

Hi Gambit,

Many thanks, I have to say the air was blue when I got the letter rejecting my referral to the haematologist a few days ago, so thank you for your support. I do feel very grateful to everyone here on the forum who offer their valuable knowledge and experience - it gives me hope! And yes, I second everything you have said.

I'm not sure know whether to go the route of self injecting or to try the nasal spray.. think I need to get as much info as I can. My GP isn't going to give me more frequent injections, I know that much.

Treacletart33

[treacletart33 in reply to Gambit62]

HI Gambit,

Would you let me know where you got your nasal spray from please?

Many thanks

Treacletart33

[treacletart33]

Hi Mrs_Somerset,

Thank you for your very kind reply. Can you give me some more details about the facebook b12 page please, what do I type into the search bar.. sorry, I'm a bit of a technophobe really.. I am interested in getting more regular injections, i.e., doing it myself, but I want to do it safely so I would greatly value your advice.

Thank you

Treacletart33

[KiPeRi75]

Treacletart - sounds so much like my experience. I posted on here for the first time this morning. I've not heard of nasal sprays Gambit - how does that work please?

[KiPeRi75]

I'm wondering whether to go to an endocrinologist too. Facebook page I follow is Pernicious Anaemia/B12 Deficiency- Support Group