Hi think something is getting worse or not working for me anymore

I started my 50mg of levo end of december had follow up bloods and was in range i have posted previously my bloods on vit d/calcium, b12 ,folic, iron but the last week or so i.ve been getting really tired again falling asleep early and struggling to get up also waking in the night more often again and struggling to go back to sleep as if my mind is working over time.the sun also makes me have headaches don.t know if its all connected . I stopped feeling this bad since taking my vitamins cause they did really improve my tiredness but now i feel like i.m back to square one again.

23 Replies

oldestnewest
  • Antonia26 if I'm remembering rightly, you had very low B12 with lots of symptoms and a family history?

    I'm wondering if the new BCSH B12d diagnosis guidelines would help you, I posted them again in a thread yesterday, see here:

    healthunlocked.com/thyroidu...

    H x

  • Hi thanks i.m taking 1000 b12 methyl daily also take iron with b12 in them aswell my pins and needles i tend not to notice to much anymore as had it so long but they are better i do get patchs over my body they have a tingling burning feeling off and on. I really don.t like injections i can manage blood being taken but a injection no way. I.ve a appointment next month so will take a print off if the thread u posted to show them i.m waiting for a neuro appointment and that can take years also i.m tild 18 month waiting time lol glad its nothing serious other wise i could be dead time i.d see them. I think i.ve got hashi's aswell as high antibodies .

  • OK, just bear in mind sublinguals don't necessarily work if you have PA, they tend to help in addition to injections, rather than instead of, particularly if you have neuro symptoms.

    If you're going to stick with methyl sublinguals on their own, then you should take a much higher dose, the 5000mcg would be better. You will also need a good B-complex and at least 800mcg of methylfolate to compliment the methylB12.

    I use Pure Encapsulations B Complex Plus (which I get from Breakspear Medical Group, order over the phone). Thorne Research Basic B is also meant to be good:

    amazon.co.uk/Basic-Complex-...

    Both contain 400mcg methylfolate.

    You can add in extra folate to up the dose to at least 800mcg, Breakspear also stock Pure Encapsulations Folate 400 (if you're ordering the B-Complex from them already), or you can buy Solgar Folate from Amazon (and I'm sure there are many other brands out there):

    amazon.co.uk/Solgar-Folate-...

    Watch for symptoms of under and over methylation, there is some info about that here. The trick is to add some niacin if this happens:

    mthfr.net/overmethylation-a...

    This is particularly relevant for those on thyroid meds, trying to balance the right dosages of everything they are taking.

    H x

  • I want to add that I'm a bit worried by your "I'm glad it's nothing serious" comment. This is serious. You could have permanent neuro damage by the time those 18 months are up. I would suggest keeping a symptom diary and getting straight back to the doctor if those neuro symptoms start to worsen. 18 months for a neuro appointment is unreal.

    Have a read through those guidelines anyway and you will see that treatment is not supposed to be delayed whilst waiting for the results of other investigations, it is better to treat someone who hasn't got it, than not to treat someone who has. Sorry if this sounds a bit harsh. I left it for years, just don't want others to do the same.

    H x

  • No thats fine it was my idea of a joke where hospitals and doctors don.t think we are really ill and its all in our head i see my doctor every 4 wks or 8 wks but really don.t get anywhere i tell het stuff cause she don.t know about it and she then has to write to the hospital to confirm it all it takes months to hear back off them. I hate going back and fore there cause i feel as if i.m lying to them.

  • Ok thank you will look into doing all that now really thought i was on the mend gutted . I was being tested for pa but cause i had iron and b12 test separate hospital wouldn.t test me for that until 6 months later they are clamping down on testing stupid i know.

  • Now you've been supplementing testing won't be accurate. You're going to have to appeal on the basis of your original results. They can do the IF antibody test if you stop taking the B12 for a couple of weeks first. Anti-parietal cells ca be done anytime. The other tests would need much longer (maybe even 4 months) off sublinguals. It takes that long to turn over new blood cells.

  • Are you sure you don't need more levo? 50mcg is still quite a low dose from what I've read on this forum. x

  • Doc won.t up dose as my levels are in range.

  • I've just looked back at you last question and realise you are already on 5mg folic acid plus extra in some of your other supplements. How long have you been taking it? This will build up unmetabolised if you don't have enough B12. So if you up your B12 dose, either stick with the folic acid you are already on if it's working for you, or switch to methylfolate as per the answer above. If you switch over and crash, then you need to go back.

    Review your supplements, add up the quantities of the vitamins and minerals in them. You could be taking too much of something. Too much B6 is believed to cause neuropathy for example.

  • Hi my doses are methylcobalamin b12 1000mcg 1 a day ,folic acid 5mg 1 a day, ferrous fumarate 322mg1 a day,calcium and vit d chewable tabs 500mg 1 twice a day. I then take vitabiotics calcium magnesium vitamin d3 zinc and supporting nutrients they contain vit d 10ug, calcium 800mg,magnesium 300mg,zinc 10mg, copper 1000ug, manganese 0.5 mg, selenium 50ug, boron 0.6 mg. Then vitabiotics slow release feroglobin b12 iron 17mg, zinc 12mg,copper 1000ug, folic acid 400ug, vitb12 10ug, vit b6 5 mg . I take 1 each a day i was taking 2 a day of the calcium and vit d tablets.

  • I would say your first priority is to try and get the PA antibody tests, and then B12 injections to go with all that folic acid. One doesn't work without the other, the folic acid will likely be building up unmetabolised.

    If this really isn't an option for you then try what I've suggested already re upping the B12 dose and switching to methylfolate and a good B-complex. If you do this you probably don't need the folic acid as well (although hard to say for sure, we're all different).

  • Thats great thanks will try this and see where i go and ask about the pa test when i go next thanks for the help.

  • Hi and another thing everything i.m taking is it safe while breast feeding can it do anything to my son.

  • You need supplements more than ever if you're breastfeeding, you will be losing a lot of nutrients in your milk. Please just watch for signs of deficiency in your son - how old is he? Maybe giving him an age appropriate multivitamin would be good too. Funny we were talking about this today on the PA page, a lot of us who breastfed whilst B12 deficient had colicky, refluxy babies who didn't sleep. More serious signs of deficiency are listed here:

    b12deficiency.info/children...

  • Ok thanks my son is nearly 10 months but have noticed he is bruising easy and taken him to the doctors and we.re keeping an eye on him is ribs are brusing all the time and he don.t go on the floor to hurt them so was wondering if anything i was taking harming him was just ruling it out.

  • Has the doctor run any blood tests? You need to ask for an FBC, B12, folate, ferritin, vit D and thyroid. Don't give him any supplements, get the tests. Children do not always have macrocytosis and anaemia, or a low serum B12, when they are deficient. It would be better if you could get his MMA and homocysteine tested. Urinary MMA is non invasive and most accurate in kids (and adults!), you can actually buy the test here:

    medichecks.com/index.cfm?s=...

    Or ask to be referred to a haematologist. Consider joining our Facebook Group because there is lots of experience of B12d adults with B12d kids over there and they might have better insights than me.

    facebook.com/groups/1749289...

    I intend to get my kids tested with the uMMA over the summer (they are 11 and 9). Expect to meet resistance from doctors, the general line is that kids don't get B12d which is absolute nonsense. Please don't leave this to chance, better to kick up a fuss now and be wrong, than to do nothing.

  • Thanks we have a peds appointment on the 13th as he keeps having a bad chest all the time with no tempature and our doctor said to tell him about the bruises and they should do blood tests on him so will ask for certain now .

  • Make sure you get copies of everything, PM me if you want me to have a look at them. Good luck. x

  • Thank you x

  • Hi - I just wanted to add a comment to 'bookmark' the page for later reference. Hamspter1 can you please write a document on PA!? I'm serious!

  • Lol, all that B12 has supercharged my brain! No really, just join a PA group, loads of info on the PAS forum and the PA Facebook page. x

  • If you are on 50mcg levo. It may be too low for you, despite being in the 'reference range' which makes your GP happy. Go to date November 28, 2003 to read question.

    web.archive.org/web/2010103...

You may also like...