Very nervous

I have been diagnosed with Polyglandular auto immune syndrome as in the past three years I have developed Hashimoto's thyroiditis, Type 1 diabetes and PA. I have just been told that I now also have adrenal antibodies and stand a good chance of developing Addison's disease as and when the damage becomes too great!!! For reasons unknown, my immune system seems to want to kill me!!! It's not been a great couple of years!! Like just about everyone on this forum, I can't survive any longer on 12 weekly B12 injections and have made the decision to self inject. However, I am very, very nervous about buying any medicine off the internet, let alone an injectable one. I know that kind individuals have posted various details of companies that they use, but how do you know you're not buying coloured water or worse?!!!!

Many thanks to you all for keeping our spirits up!! 🙄

6 Replies

oldestnewest
  • we use reputable sources and we know we are using the same products as are used by our doctors.

    The rules that make injectable B12 prescription only don't apply in a lot of other countries in the EU including France and Germany - where injectable B12 is supplied as an over the counter medication. Germany has a lot of on-line pharmacies that provide medications that are over the counter there on line - most of us use one of these pharmacies.

  • Thank you so much for your reply. I want to order some supplies, but don't know who these reputable companies are. Could you recommend some that are known to be safe?

  • i use mycare.de Others use vesando.de (that may not be the correct address). Some use amazon.de and some use goldpharma.

  • I ordered B12 Hydroxocobalamin (B12 DEPOT ROTEXMEDICA 10x1ml) from this German company - pressed Union Jack to translate and paid by PayPal.

    mycare.de

    This link gives good information on various sources as well as Medisave link - 10th reply down (hidden - Marre) :

    healthunlocked.com/pasoc/po...

    Very best wishes SiouxieSue

  • I still say Siouxiesue that if you have neurological symptoms your doctor should be giving you injections every eight weeks and not twelve - in accordance with both the N.I.C.E and B.N.F. Guidelines.

    Click on the link below, then on "Scenario Management" and scroll down to "Treatment of B12 Deficiency"

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

    Ask your doctor to read the first paragraph as follows:

    "For people with neurological involvement:

    Seek urgent specialist advice from a haematologist.

    Ideally, management should be guided by a specialist, but if specialist advice is not immediately available, consider the following:

    Initially administer hydroxocobalamin 1 mg intramuscularly on alternate days until there is no further improvement, then administer hydroxocobalamin 1 mg intramuscularly every 2 months."

    I wish you well.

  • Thank you so much. I will read this and be forewarned, but as defeatist as this sounds, I just don't have the energy to keep going into battle with the GP's at my practice and self admintering seems to be the only viable way forward. Even with a B12 level of 162 (had dropped from 302, 6 months prior after receiving a series of loading doses to 'shut me up') none would diagnose PA, despite having multiple autoimmune diseases and parietal cell antibodies. I was getting sicker and sicker until I broke down in tears in front of the diabetes nurse at the hospital. Thank goodness she then went to my endocrinologist who wrote a very strongly worded letter to my surgery basically telling them I had PA and that they must give me B12 injections. Absolutely disgusted that I saw three separate GP's, explained my whole medical history and begged for the injections, but none would budge, despite me explaining the autoimmune links etc etc. Mind you, this is the same surgery that just assumed my high blood sugar was type 2 diabetes (fat and forty) and sent me away, when it was actually type 1 and I already had hashimotos (the two often go hand in hand). They should know this stuff!!!!

You may also like...