Tis me again, yet more tests!

Hi all

long time no see ;-) I've been busy trying to fully regain my 10% of lost health, where the Erfa, or indeed the thyroid, may not be to blame.

Still struggling with ectopic heart beats, headaches just as the back of my head near neck and very tired eyes. As I have Graves, tested for thyroid eye disease but ruled that out. Endo, who is brilliant by the way, wants to rule out Myasthenia Gravis. If that is ruled out, a neurologist. I however, am convinced it's B12 deficiency, despite my bloods showing not. One auto immune condition often begets another and Graves is often linked with pernicious anemia. Am considering travelling to London for the Active B12 test if it's not available at my local Nufflield by end of January.

Have also joined forces with two lovely women who have had epic struggles with this illness and put in a petition to the Scottish Parliament and there is a BBC health journalist looking in to this issue for us. Whether she does anything with it remains to be seen but we have to try. My lovely endo, who I see privately but who works in the local NHS hospital, has offered, actually OFFERED, to write a letter backing up our petition. So, not all bad. Just wish I could get to the bottom of these residual symptoms. Gently trying to increase my Erfa from 2 grains to 2 and a half. Nerve wracking...

Hope you all manage to have a happy and healthy Christmas, change is coming xxxx

8 Replies

oldestnewest
  • Can I ask if you are taking anything B12 wise?

    Moggie x

  • Hi lala - lovely to hear from you :) Fingers crossed re the journalist :)

    I have just gone up to 2 grains (again) but with endo's knowledge and approval this time - hope 2.5 suits you. I am suffering with all of the usual headaches etc that I get when I increase. Hope you haven't had to sit on the bathroom floor again?

    Please could you send me a PM with your endo's name and location? There is someone else in Scotland that I was talking to the other day who wants a local endo who could prescribe NDT.

    Thanks and Merry Christimas :) xx

  • Hi Clarebear! Good luck with the 2 grains, maybe that's the magic number for you. Will PM you in a sec.

    No more bathroom floor thank goodness ;-) Was mostly very well on 2 grains and the symptoms seemed to be noticable around the time of the month for me which could also point to low iron. I really struggled to get my ferritin about 50 as it affected my stomach so much so am trying slowly with that and the B12 spray.

    It's a full time job this malarky isn't it? xxxx

  • I got my ferritin to 62 but last time it had dropped slightly to 51. Am struggling to fit in another dose without it affecting the Armour... Would love to get it to 70-90 :D

    Good luck with the B12 - I think mine is OK :) xxxx

  • Hi Moggie, I was taking B12 (methylcobalim) for a while and it raised my blood levels but didn't feel a huge difference. I bought ReadiSorb last week and felt an immediate improvement though it's very early days. If my hunch is right and I have pernicious anemia or issues with absorbtion, I'd rather have the active B12 test to know for sure.

  • The reason I asked was because I have been suffering with palps,irregular heart for nearlly a year now and after stopping my B12 suppliments last week they seemed to have calmed down a lot, although saying that they do tend to go in spasms, so they may well start up again.

    You certainly seem to have been very busy and I hope the petition and the journalist come up trumps for you.

    Have a good christmas.

    Moggie x

  • Hi Lala,

    I was thinking of you on and off all day yesterday......what a joy to see your post!

    In June I went to see one of the B12 Doctors and he explained to me that when the B12 levels go low the b12 receptors switch off. this means that blood levels can be good and even fabulous but the B12 is NOT going where it needs to get to! The only way to get the receptors to switch back on, in his opinion, is to inject very regularly for upto 3 months.

    This is why we only see if there are benefits from trying B12 injections or even infusions.

    If you do come to London for the test let me know and I will come up and meet you if you would like???

    Good luck with the quest it is such a GAME!!!!!!

    Much Love,

    Sue xxx

  • Hi Sue! I've been thinking about you often! ;-)

    I agree about the injections so I really do need to either get the GP on board or have the active B12 test. The ReadiSorb is pretty good stuff if you hold it under the tongue for twenty seconds before swallowing but how can it undo years of deficiency...

    I would LOVE to meet up with you if I come down there. Hope you are getting further forward with this rollercoaster ride we're all on

    lots of love and Christmas cheer coming your way xxx

You may also like...