Have posted here and the PAS forum. (Recent results on previous posts). Just trying to understand why I feel more breathless and lethargic since starting b12 injections 6 months ago. I understand that the b12 uses up folate, iron and ferritin stores in the absorption process but can it have an impact on thyroid hormones?
I'm still waiting to be diagnosed.
Thank you.
strictly speaking B12 doesn't use up folate, iron etc. What can happen with folate is that after you have been deficient in B12 for a while the body has damage that it needs to repair so starts using more folate as well as the B12 to heal the damage. The impact on iron/ferritin levels is likely to be healing macrocytosis (larger rounder red blood cells) but it should not deplete iron levels. If you have a problem absorbing b12 then it can affect your ability to absorb other vitamins and minerals so you may need to increase your dietary intake of other minerals and vitamins but having B12 injections shouldn't affect iron/ferritin levels.
many people actually report that having enough B12 means they need to reduce their thyroid medication levels - possibly because the processes that use both start to run more efficiently.
Suggest you post details of B12 treatment on PASoc forum - It would help to be a little clearer about what conditions have been diagnosed and what conditions haven't been diagnosed as you seem to have multiple potential diagnoses.
In the same way that some people can feel worse when they start thyroid treatment because they are put on too low a dose, some people can feel worse when they start B12 treatment because they are actually on a frequency that is too low for them.
many people actually report that having enough B12 means they need to reduce their thyroid levels
Do you actually mean they need lower levels of thyroid hormone? Or do you mean the need a lower dose of thyroid hormone replacement? What you've written is a little confusing. 
Thanks for your reply. Unfortunately, as my b12 level was too high to warrant a trial of b12 injections, I have had to start self injecting. The PAS forum, b12d charity, PAS and New Beginnings B12 Facebook group have helped with knowing what cofactors I needed.
At least the alternate day injections that I've done for 6 months keeps the balance problem and swimming head under control.
I noticed this and previous posts of yours and suspect you have poor methylation, b12 and cofactors will certainly help..
drmyhill.co.uk/wiki/CFS_-_T...
The above link is to a CFS doctor's website. She is pretty good as she used to be an endocrinologist that studied functional medicine as well and is pretty good at understanding fatigue in endocrine disorders (including diabetes and hypothyroidism) and ME / CFS which is understood to also belong to the autoimmune family of conditions.
If you are still struggling, you may benefit from thyroid help as well (low t3 is often a problem) and many here can help with that.
drmyhill.co.uk/wiki/Thyroid...
Thanks HLAB35, that made interesting reading. I'd researched a potential b12 deficiency in the last year and initially took high dose methyl b12 sublingual tablets. These only made my balance problems and swimming head worse. The b12d charity suggested that hydroxocobalamin would suit me better. I sourced some sublingual tablets for this type and even after one tablet, my swimming head was so much better and I started to be able to walk in a straight line. (Taking high doses for those weeks meant that my blood test was showing too high a reading, so no diagnosis. I didn't realise that there were other tests for b12. I only came off of the b12 for 2 months, not realising it should be 4 months).
In almost 6 months, I've self injected hydroxocobalamin on alternate days and my balance is so much better. I had my cofactors checked again in March and these are good. I take methylfolate, ferrous biglycinate and magnesium glycinate. My vitamin D level had dropped a bit to 63 nmol/L so I've been taking a better quality softgel vitamin D and K2 for the last 2 months.
General aches and pains are so much better but it's so exasperating to hope I'd solved my symptoms by finding the right b12 for me and considering my cofactors, to now be feeling even worse and so debilitated by iit all.
I have wondered if I do have MTHFR mutations so need to have that all checked out. I see another endocrinologist on Wednesday so hoping that I can be taken seriously this time.
If you manage to find someone who understands MTHFR mutations then you'll be very lucky. I've read that like you, for many, it is better to have adeno or hydroxycobalamin rather than methylcobalamin. I stuck with the latter as it's more readily available, but often need to take breaks from it as it can cause racing mind issues. As an alternative to missing a dose, taking NAC (note: this is not for everyone as it can cause digestive upset) at night will bring me back to normal (along with extra Magnesium as NAC seems to eat up B12 in order to manufacture glutathione). I seem to be enjoying a state of happy equilibrium..
Neurological conditions can all benefit from b12, but, as you say, it's finding the right sort. Magnesium is almost as vital as it dampens down nerve receptors. I recently found magnesium is good in combination with malic acid. This is recommended for fibromyalgia and my back is very grateful.
fibromyalgia-symptoms.org/m...
Thanks about the NAC, I've just read some reviews on Amazon and it mentioned help with breathing problems and so many other symptoms so that will good to try. I now feel that I need much more magnesium than before, I guess after a while you become more in tune with your body. Will also look into the malic acid.
Someone on the new beginnings b12 Facebook page takes adeno tablets with injections so I'm going to try this too at some point. Of course, I need to do all this one at a time to see what does help! So much a trial and error with every stage. Even confirming what folate supplement suited me took time, folic acid and folinic acid gave me headaches.
It's good that you've found something that helps your back. My sister suffers with degenerative disc disease and I've mentioned CBD oil to her but her husband is nervous about her taking it.
Your sister should also benefit from b12 and Magnesium - both are needed to make healthy bones and myelin (the protective coating for nerves). It's very common to have similar genetic issues and deficiencies, but the expression of those genes and illnesses may be more environmental. Unfortunately, medicine tends to compartmentalise conditions rather than look into how many of them have common causes. I recommend lots of Omega 3 (over Omega 6). CBD oil isn't something I've tried but have read that it helps in MS.
I'm the same as you with folate - I'm best with a low dose of methylfolate and lots of folate in food. The others make me nauseous!
Continue to investigate and update your knowledge and you'll be doing really well, as there are new studies coming into the public eye all the time.
Thanks HLAB35, particularly as I'm not well enough to work, this strangely keeps me sane.
I often wonder too if my sister has under active thyroid on top of everything else. As someone else said, autoimmune hunts in packs or at least in pairs!
I now take an oil with both omega 3 and 6, Udos Choice as only took flaxseed oil for years. Definitely helps my dry skin and I notice the difference if I don't take it.
Thanks for all your information.
Dr M is an excellent doctor, but she's always been a general practitioner. She still knows more about thyroid function than most 'specialists' though...
I thank a lot of GP's have specialist interests (unfortunately very few understand thyroid) and I'm convinced she did some endocrine study in her bio as she wrote a book on Diabetes. If she is just a GP she is one in a million..
"Normal" Thyroid panel, 5mm nodule on left lobe, hypothyroid symptoms
thyroid hormones and beta blockers 
Come from B12 forum - can treating iron deficiency unmask hypothyroid symptoms?
B12 Injections and Recovery of Health
