Guest guest Posted August 14, 2010 Report Share Posted August 14, 2010 Just wondered what experiences there are on here of being diagnosed with PA and also having Hypo. I understand the two conditions can go hand in hand.When we get a low level B12 result is anyone aware of any further tests there are to determine if the intrinsic factor is missing? I know we can supplement with B12 sublingually,but if PA was present it would need to be medicated by injections. From what I have heard peopel diagnosed with PA often suffer needlessly like many of us with thyroid problems. They are frequently not given a diagnosis because of path lab ranges and when diagnosed are given less frequent injections than they need, often having to resort to visiting mainland europe and USA to get vials of the medication they need. Sounds so familar, maybe it would be an idea for PA suffers and Thyroids to get together and storm the powers that be. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 2010 Report Share Posted August 15, 2010 Isn't that an auto - immune disease as well as hypo? Glynis Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 2010 Report Share Posted August 15, 2010 I had antibodies with regard to pernicious anaemia - so presumably that was auto immune but I never had any antibodies regarding my thyroid as far as I know. I did once ask the GP to test for antibodies regarding thyroid but he only tested for one, not the both, and it came back very low - something like 6 I think (maybe less), so he said that was OK. Lilian Isn't that an auto - immune disease as well as hypo? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 2010 Report Share Posted August 15, 2010 I think it's generally accepted that the Endocrine system is like an orchestra. If one part is gone wrong, look for others!I was diagnosed a year ago & have to say that B12 injections improved my life massively. I personally went private to a doctor in South Wales (details from PA Society) & now buy my own B12 (which is really cheap) & do my own injection monthly.Well worth joining the PA Society, they have a good Forum too.http://www.pernicious-anaemia-society.org/ --- In thyroid treatment , "hannahleahy70" <hannahleahy@...> wrote:>> Just wondered what experiences there are on here of being diagnosed with PA and also having Hypo. I understand the two conditions can go hand in hand.When we get a low level B12 result is anyone aware of any further tests there are to determine if the intrinsic factor is missing? I know we can supplement with B12 sublingually,but if PA was present it would need to be medicated by injections. From what I have heard peopel diagnosed with PA often suffer needlessly like many of us with thyroid problems. They are frequently not given a diagnosis because of path lab ranges and when diagnosed are given less frequent injections than they need, often having to resort to visiting mainland europe and USA to get vials of the medication they need. Sounds so familar, maybe it would be an idea for PA suffers and Thyroids to get together and storm the powers that be.> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 2010 Report Share Posted August 15, 2010 PLEASE WILL YOU DELETE MESSAGES PREVIOUS READ AND LEAVE A SMALL PORTION ONLY OF WHAT YOU ARE RESPONDING TO. THERE ARE OTHER MEMBERS WHO CHOOSE TO READ MESSAGES VIA A DAILY DIGEST OR DIRECT FROM THE WEB SITE AND THEY GET PRETTY FRUSTRATED WHEN HAVING TO SCROLL THROUGH SO MUCH TO GET TO THE NEXT MESSAGE. PLEASE SPARE A LITTLE THOUGHT FOR THEM. SHEILA ______________________________________________________________________ Hi Lilian Sounds like you need some advice or a change of GP http://www.pernicious-anaemia-society.org/ Most of the people over on the PA Society forum have injections more frequent than 3-monthly & are also allowed to inject themselves. I personally went private & buy my own B12 from Europe (only because it's really cheap & I can't be bothered tugging my forelock to a GP). I inject Monthly. I get my Testosterone from the NHS & when I asked my GP if I could inject myself, he had no problem it. He offerered to give me a lesson, but I declined. This means I can split my dose to weekly, rather than the ridiculous 3-weekly NHS protocol. > I now have to have injections for the rest of my life. They will not let > me do it myself and if I am a day early they moan. In fact when I told a > nurse that it was more convenient for me to come on that day (a couple of > days before it was due) she said " we are not here for your > convenience " . She has now left the practice. > > Lilian > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 2010 Report Share Posted August 15, 2010 >>>>Sounds like you need some advice or a change of GP http://www.pernicious-anaemia-society.org/Most of the people over on the PA Society forum have injections more frequent than 3-monthly & are also allowed to inject themselves.<<<<<< I am already on my third doctor What makes me mad is that I already inject myself with insulin. But I think there is some controversy with doctors as to how B12 should be injected. Dr. Myhill said something about that in her interview. Like everything doctors just seem to want to keep you ticking over not make you well. Like with my thyroid, just enough T3 to keep me ticking over rather than to be well. Lilian Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 2010 Report Share Posted August 15, 2010 Hi LilianYou may want to consider taking this into your own hands.I can vouch for www.goldpharma.com in Germany I ordered :4. Lophakomp b12 depot1000mcg 10 Solution, injectable £ 15.06 1.000 mg Hydroxocobalamin (Köhler Pharma) Amount : 2 x 10 vials @ £ 15.06 = £ 30.11 SHIPPING FEE : £ 7.52 TOTAL AMOUNT : £ 37.63 (for 20 injections) I am already on my third doctor What makes me mad is that I already inject myself with insulin. But I think there is some controversy with doctors as to how B12 should be injected. Dr. Myhill said something about that in her interview. Like everything doctors just seem to want to keep you ticking over not make you well. Like with my thyroid, just enough T3 to keep me ticking over rather than to be well. Lilian Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 2010 Report Share Posted August 15, 2010 Hi Lilian Just noticed the price has actually dropped since I last ordered. www.goldpharma.com Lophakomp b12 depot1000mcg 1.000 mg Hydroxocobalamin (Köhler Pharma) 5 vials = £8.12 10 vials = £11.84 Shipping = £6.95 All the equipment you need is really inexpensive at http://www.medisave.co.uk/ Or even cheaper if you don't mind going to your local needle excahange, which I've never tried, but I'm told they will give you them for FREE. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 2010 Report Share Posted August 15, 2010 The difference is that B12 is injected into a vein and insulin into muscle. Inject into a vein wrong and you die. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 2010 Report Share Posted August 15, 2010 The nurse who gives me my B12 injection injects it into the muscle and not into a vein. Lilian The difference is that B12 is injected into a vein and insulin into muscle. Inject into a vein wrong and you die. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 2010 Report Share Posted August 15, 2010 Not sure I fancy injecting from a bottle with a syringe as I am used to injecting the insulin from a pen. But I suppose one can always get used to it after all before the pen that was how it was done. It really isn't that expensive so I wonder why the doctors are so reluctant to give it more than once in three months. It is not as if you can overdose on B12 either. I will keep the information for future use so thanks for that Ian. Lilian Just noticed the price has actually dropped since I last ordered.www.goldpharma.comLophakomp b12 depot1000mcg1.000 mg Hydroxocobalamin (Köhler Pharma) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2010 Report Share Posted August 16, 2010 That's what this group is about Glynis - learning ) Luv - Sheila My apologies, there is no excuse then is there? No virus found in this incoming message. Checked by AVG - www.avg.com Version: 8.5.441 / Virus Database: 271.1.1/3072 - Release Date: 08/15/10 18:35:00 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2010 Report Share Posted August 16, 2010 Hi Glynis I think it probably is. I know I'm deficient in a host of things & only discovered my Thyroid issues more recently than Testosterone, Cortisol & B12 There is a study currently going on at Manchester University, which I believe has already proven genetic links. Was I correct in thinking that it is an auto - immune syndrome the same as hypo? My mother and father were second cousins, two branches of the same family, on my fathers side pernicious anaemia and hypo on my mothers side hypo and hyper... Thanks folks...... Glynis Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2010 Report Share Posted August 16, 2010 Well Ian, as far as I am concerned my conditions are definitely genetic. My father's side of the family have hypothyroidism and although I do not know about the others his mother had pernicious anaemia. My mothers side of the family all have diabetes. Most of my cousins on my mothers side also have diabetes although perhaps not all, and some also have hypothyroidism, although not all. Myself, and my two sisters have diabetes and hypothyroidism and so far I am the only one with PA. As yet our children do not have any of these. Lilian Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2010 Report Share Posted August 16, 2010 Hi Lilian I'm 1000% convinced of this myself. I remember my Nan (Dad's Mum) was a big lady, with a BIG fat throat & she was a mad as a hatter. My Dad sadly committed suicide 12 years ago. He had a whole range of symptoms & 2 of his brothers went the same way. In all the time I've been searching for my own answers, I was always driven by the fact that I knew whatever was wrong with my Dad was wrong with me & I sure as hell didn't want to do that to my kids, or pass on this rubbish. I've had the best year I've had in 20 years, so I'm delighted & I'll be watching my kids like a hawk. > > Well Ian, as far as I am concerned my conditions are definitely genetic. > > My father's side of the family have hypothyroidism and although I do not > know about the others his mother had pernicious anaemia. > > My mothers side of the family all have diabetes. Most of my cousins on my > mothers side also have diabetes although perhaps not all, and some also have > hypothyroidism, although not all. > > Myself, and my two sisters have diabetes and hypothyroidism and so far I am > the only one with PA. > > As yet our children do not have any of these. > > Lilian > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2010 Report Share Posted August 17, 2010 Yes, it was methocobalamin and I injected it every day. It didn't appear to help me though. :-( Miriam > The bottle you had may have been Methylcobalamin. This can be injected Subcutaeniously (the fat below the skin), as it is already Methylated. It does need to be done much more regularly though. I was first given that, but now choose to use Hexo once a month. > > I can tell when I need it! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2010 Report Share Posted August 17, 2010 Hi Ian Lots of info thank you. I was wondering how much Hexo you use on a monthly basis and where you get it from. Also did you have a test done initially to check if the intrinsic factor was missing or was it because your B12 was below the ref range? I have a low B12, my mother suffered from PA, but my GP will not do any further test re intrinsic factor. Han > > > There are different types of B12. Hexocobalamin is what is prescribed by the NHS & Cyanocobalamin is popular round the world. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2010 Report Share Posted August 17, 2010 Hi HannahI've never been tested for intrinsic factor. Dr Riar just took one look at my nasty fat tongue, nasty toenails & my scabby shins (that I'd scratched to bleeding) & that was that. The speed at which they cleared up was enough for me.I inject a 2ml Ampoule of Hexo every 4-6 weeks. I get if from here. It was recomended on the PA Society forum. http://goldpharma.com/search/hydroxocobalamin/lang/ENGLISH/ Lophakomp b12 depot1000mcg 10 Solution, injectable £ 11.84 1.000 mg hydroxocobalamin (Köhler Pharma Hi Ian Lots of info thank you. I was wondering how much Hexo you use on a monthly basis and where you get it from. Also did you have a test done initially to check if the intrinsic factor was missing or was it because your B12 was below the ref range? I have a low B12, my mother suffered from PA, but my GP will not do any further test re intrinsic factor. Han Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2010 Report Share Posted August 17, 2010 Hi Miriam I was first given Methyl too, but I bought some Hexo at the same time & just preferred to get it done in a monthly dose. I've heard several people on the PAS forum say that they didn't get results from Methyl. I know I was told to inject it 3 times a day!! Maybe you should try Hexo? > > Yes, it was methocobalamin and I injected it every day. It didn't appear to help me though. :-( > Miriam Quote Link to comment Share on other sites More sharing options...
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