• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Search results

  1. C

    High b12 levels and my story - Not sure where to post this, sorry!

    I just came across this post again when googling... I have had a diagnosis now & yes as I thought I have MS ... Primary progressive... Anyway just thought I'd update for anyone reading & never stop fighting! ... Now I walk with a stick, need a wheelchair for distance and there is extensive...
  2. C

    Completely at a loss here....

    Thank you both for your understanding.... I'm just shocked by doctors ignorance... I wouldn't be surprised if my docs had never heard of these tests... This forum is full of people so much more knowledgeable than doctors I have seen lately... :( (Thank you!!!) Steve - I hadn't heard of the...
  3. C

    Completely at a loss here....

    Ok so I had an appointment with an endo today... was hoping for some answers but more questions.. So I explained to the endo my symptoms (absolutely no stamina, walking becoming more and more difficult because my legs get stiffer and slower and heavier to the point I cant move them and have to...
  4. C

    Vitamins processing... Help please?

    Hi, I have had trouble walking (stiffness, heaviness and weakness with numb feeling legs) for a long time now.... Doc is now referring me to a neuro as i had some hyper reflexes... Anyway I have been trying to find the answer to my problems for so long & all basic blood tests came back ok...
  5. C

    High b12 levels and my story - Not sure where to post this, sorry!

    Spoke to my good doctor today and she was very helpful..... She sounded shocked that the hospital hadn't sent a sooner appt as she did write to them again after the 30 week wait response, and she told me to get to the surgery on Monday after the weekend. I am very worried but I guess I'll find...
  6. C

    High b12 levels and my story - Not sure where to post this, sorry!

    Thanks Tania! I will ask for all copies soon but right now I don't even have the strength to go to docs.... I used to have the odd better day but now I don't but when I can go again I'll get copies... Tbh I'm not sure if an endo can even help with me, the doctor said if the endo cant find the...
  7. C

    High b12 levels and my story - Not sure where to post this, sorry!

    Hi again..... Really not sure where to start on this but basically all my symptoms are now getting worse and have been told up to 30 week wait for endo appointment :( I just do not know what to do as everything is such a struggle right now and takes so much effort that I just feel so...
  8. C

    High b12 levels and my story - Not sure where to post this, sorry!

    Thank you for all your help all of you xxxxx Doc is referring me to an endocrinologist .... She was brilliant today again, really listened and can obviously see I'm not well. I'm not sure why she wrote that on my notes but I was on the phone to her - maybe she needs to see me to believe me :(...
  9. C

    High b12 levels and my story - Not sure where to post this, sorry!

    Hi rlc - thanks again, youve been so helpful xxx I spoke to the receptionist at the doctors surgery and got the ranges and have been told the doctor has noted on my records now that i will never have thyroid problems :o (!!!???!!! I am shocked by this!!! Yes maybe I haven't a thyroid problem...
  10. C

    High b12 levels and my story - Not sure where to post this, sorry!

    Another thing that could mean thyroid is I now have very heavy periods and more painful.... My hair is also so dry and coarse and am losing more than usual.... But my weight hasn't gone up if anything I'm losing slightly.....
  11. C

    High b12 levels and my story - Not sure where to post this, sorry!

    Hi nanonug - No I dont have them but could call docs tomorrow and try and find out...
  12. C

    High b12 levels and my story - Not sure where to post this, sorry!

    Thanks rlc! Those links are very helpful and very interesting - will be printing off to take to docs :) I have had latest results today .... Not sure if anyone knows much about thyroid blood tests levels... TSH 3.16 (has raised AGAIN) T3 = 4.8 (Free T3) T4 = 18 (Free T4) And doc says my...
  13. C

    High b12 levels and my story - Not sure where to post this, sorry!

    Hello again :) Ok so since I last posted I had my food intolerance test results and according to the results I have intolerances to eggs (both white and yolk), milk and yeast (This means candida as far as I can work out!). I have tried to avoid all these and have just started taking...
  14. C

    High b12 levels and my story - Not sure where to post this, sorry!

    I have also been having very very tingly feet and my left hand was tingling for a few hours a couple of days ago for a few hours ..... My feet though have been constantly tingling .... Very strange for me....
  15. C

    High b12 levels and my story - Not sure where to post this, sorry!

    Thank you all xxx ... I have wanted to reply sooner to thank you but still feeling bad and I have found concentrating difficult ... Maryb - Like you say I am not going to take the beta blockers as I dont think it is fair on my already confused, not working properly body to detox .... He...
  16. C

    High b12 levels and my story - Not sure where to post this, sorry!

    So if I do have absorbtion problems of b12 would the sublingual supplements help like injections would? My brain doesn't work like it used to so sorry if it's a silly question :/
  17. C

    High b12 levels and my story - Not sure where to post this, sorry!

    Hi.... Not so much gastro issues... only lately when I have stopped eating gluten my movemenets havent been "normal" Yes shortness of breath!!! Haven't taken antacids and am not 100% sure on the allergy results yet.... Always stuffed sinuses! Thank you xxxx
  18. C

    High b12 levels and my story - Not sure where to post this, sorry!

    Thank you all for your replies!!! x I've been to the docs today as I had a test for celiac and malabsorption tests and went to get results... Ok celiac test result hasn't actually come back yet but b12 I found out is now 1220... I am still feeling absolutely awful, can not walk far, always...
  19. C

    High b12 levels and my story - Not sure where to post this, sorry!

    Thanks so much Crux! You really have been so helpful! :) I bought some of the B12 you mentioned today but then only to receive a phone call from the YorkTest to find out I had a positive result so I have a food allergy.... (Maybe explaining my weakness and B12 being high) When I have the money...
  20. C

    High b12 levels and my story - Not sure where to post this, sorry!

    Thanks so much Crux! So is it safe to take even more B12 if my levels are already so high? I am just worried that I might overdo the B12 as I thought maybe the reason I feel so bad has something to do with it being so high..... Sorry I just get confused with it all! What B12 do you take? After...
  21. C

    High b12 levels and my story - Not sure where to post this, sorry!

    Hi there... I wasn't sure where to post this and I have never had a diagnosis for ME/CFS, I have had quite a few doctors mention "you maybe have CFS as that would explain why you feel how you do etc". But never had a doctor follow this up as I have had anxiety so anxiety is always the final...