my main question is, when I (and others here) are taking so much to help, why do we still feel ill? Is that a naive question?
Yesterday I fainted just as I was going through airport security. Mortifying... on the ground for half an hour. Paramedic was great (and lovely doctor in the queue spent 1.5 hours with me). My blood sugar was 4.9 which was a bit low. BP was high (150/100, gradually reduced to 135/85 after 30 mins - usual is 120/75 but it has risen since I started SI).
I was also foggy i guess - I had left passport at checkin and later left my PC on the plane...
I'm SI once a week (twice a week right now because I had a tooth extracted 10 days ago and had a large abscess). I take folate, K, Mg, Ca and Vit D daily. So, why should I feel so awful? I'm slightly hyper (overactive) thyroid but don't know how much (verbal info from GP). Also quite tearful. 24 hours later I keep thinking the chair is moving around while I'm sitting down. But I've managed to navigate a new city and give a presentation, so have staggered through my obligations...
I have a neurologist appt in Jan (NHS waiting lists..) but haven't seen a haematologist at all. I was low on D, Ferritin, Folate and white cells in Jan, but Folate and D back to good levels after the supplements. I have had neuro symptoms for 10 years which are still improving after 9 months SI.
GP is kind but doesn't have much to say. If I ask for tests he will give them I think, within reason, but I am not sure what to ask. Sorry this is so long but in a way the general q is - what more does it take to keep us functioning?
Sorry to ramble....feel better for writing this.
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Mashie44
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And yet people with migraine (like me) are told to take it by specialists without any tests to check if we actually need it or any monitoring afterwards.
I would insist on finding out thyroid levels (and keep track). I was hypo all of my life then swung hyper when I started hrt. It was a nightmare, pounding heart, tremors, dizziness, forgetting things (some of this could be B12 also) but when my thryoid regulated I did feel the difference. The range for "normal" is quite large and think it is very personal.
And unfortunately the road to recovery is not quick thryoid can take 3 weeks or longer after a shift in medication
thank you for this advice ... re-reading for some moral support! I'm planning to ask for all the thyroid tests tomorrow at my appt, as it's private I presume they will do them (for a fee!). I have several of the symptoms you mentions - plus have had problems with being uncomfortably hot all my life.
GP hasn't suggested doing anything, i presume it isn't a significant factor (I think he mentioned it because I asked if I could be hypo T as I felt so weary and sluggish). I will follow it up, it may take a little while... life is complicated! The fainting was quite weird, it was like a switch going off and I crumpled (covered in bruises) -- a completely new sensation!
I sympathise with you. Do hope you are feeling a little better, but it is rather scary when one faints "for no apparent reason"... Last year I was fainting a lot,while walking in the garden, while stitting on a kitchen chair having breakfast and even while sitting down on the sofa , many times... It did not feel like a "normal" fainting episode (if that makes sense to you...). Yet the GP was absolutely useless.... She refused to refer me to an haematologist (I also have an elevated red blood cells production which she was unable to explain), so I decided to go and see an haematologist privately... WASTE of money and time. He was pathetic! He even suggested I should reduce the number of B12 injections.... he was shocked I am injecting 3 times per week... Anyway I did try and injected twice/week for 2 weeks... Big mistake. Symptoms came back, my balance not great still, though improving. He did not even give me any possible explanation about the elevated red blood cells.... I don't think he knew! So it is rather shocking so many medical professionals appear not to have a clue abour SO many things... However, one would have thought an haematologist would understand B12 deficiency... but not the case! I also saw a neurologist (privately again, out of despair) and in order to rule out problems....but that was not that great either.... but at least he diagnosed paresthesia. I knew I had neuroplogical problems, which I mentioned to GP a few years ago which of course she ignored!
Must add I also have thyroid problems, and feel pretty rough, unable to function really... Unfortunately, endos (NHS ones anyway) do not seem to understand much about thyroid dysfunctions... they all seem to be diabetes specialists.... They do not know what to look for in terms of tests, only placing importance on TSH, which is ludicrous and useless in truth! They need to test Free T4, (FT4), FT3 and the antibodies for Hashimotos's (autoimmune thyrodoxycosis)... but they do not do that so it's another pointless exercise, and only look at the TSH results and will not consider treatment unless is fairly high (up to 10), which is much too high. In other European countries they consider 3 as a high level (which it is making patients very ill).
In answer to your question "What more does it take to keep us functioning"... ... is simply we need decent medical professionals who know what they are doing and what it is all about... Sadly it is not what I and many other people on this forum have experienced. It is always a battle to try and get a diagnosis and then treatment... Why?
I wish I could have given you a more positive answer, but don't give up. Keep fighting, it is your health, your life after all. Sorry about my rambling. Good luck.
Did you have nitrous oxide during your tooth extraction ? Think it depleats b12 . My OH has PA and suffers many unexplained fainting spells , but they are becoming less frequent since taking meds for low ferritin . Hope you feel better soon Mashie .
thank you -- no, just injections for the extraction. I was told by the paramedics (while lying on the ground) that Nitrous Oxide is standard for the airport and in ambulances to give if you have a fall and need pain relief - which was interesting for those of us with b12d, as you say. I appreciate your kindness, it does help. Feeling rather sorry for self, although I know others are far worse off...
My husbands ferritin was 11 , now he's been prescribed Ferrous Fumerate 210 mg twice a day , taken with a drink containing vit c such as orange juice to help absorption , his ferritin has gone up to 30 now but needs to be higher , . I hope you speak to your GP about this and your fainting needs investigating asap . Best of luck to you
thank you so much... part of my practical problem is that I am currently working abroad so seeing a Dr involves finding one, understanding the system and then explaining that I SI and hoping they will be useful.... and then there's language barriers (their English is better than my OK French -- but I have found it is still an issue when it comes to nuances of diagnosis....
I suggest getting your heart checked - a relative began fainting and it turned out he had a heart issue. He also had previously undiagnosed thyroid issues with antibodies for both high and low thyroid.
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thryoid can take 3 weeks or longer after a shift in medication
Help re B12 and folate treatment please...
B12 loading dose - am I just being impatient?
B12 folic acid please help me 
Why do I have a high pulse?
No self injections allowed
