Could this suggest PA..?

[CathyT]

Hello people, I'm new here so please forgive what's probably going to be lots of words to ask a silly question. (I seem to talk forever these days and make no sense!)

I had B12 deficiency in Summer 2010 (169) and was told by GP to buy standard B12 supplements. I took Jarrow's sublinguals as I'd read about intrinsic factor and that standard oral supplements might not be absorbed. My level raised to 299 on sublinguals in 3 months.

I continued to take the sublinguals for another 6 months or so then switched to oral supplements as GP said I was wrong to take sublinguals as these aren't properly absorbed by people with B12 deficiency (he was wrong, eh?).

Next test was 18 months later, at 678 (Jan this year). I wasn't as dizzy any more and had stopped fainting but whether or not that was due to B12 I can't be sure.

Since then I have taken the oral supplements just a couple of times a week but level has fallen from 678 to 370 in 3 months. Logically, that suggests to me that I was benefiting from the sublinguals but not standard orals.

I have many symptoms (almost everything on PA checklist), the worst of which is terrible brain fog and total memory blanks at times. It's the neurological symptoms that are worrying me the most but had MRI scan and that's all clear, thankfully.

In past couple of days I've noticed that I'm getting a delayed vision thing going on too. I'm occasionally not "seeing" something until a second or so after I've looked away. It's as if my brain and eyes are out of synch but makes it seem as if objects are in the wrong place. I've had the same "out of synch" feeling with other senses too, as if my brain is always playing catch up. I've burnt myself a few times because reaction time is so slow and I'm always missing what people are saying (even when I hear okay it often doesn't register).

Several other related conditions, inc:

hypothyroid (hashimoto's)

alopecia universalis (hair was going grey quickly but now gone totally bald in past few weeks, eek!)

low ferritin (27, not responding at all to ferrous sulphate)

low vit D (was 26, now only 56 despite high dose supplements).

I had been very poorly for several years before being diagnosed hypothyroid two years ago and still trying to get medication right via an endocrinologist but he's convinced that my symptoms are mostly menopausal (sex hormones are a mess but I don't have ANY typical menopause symptoms!). He wants me to start HRT, and steroids for the alopecia. I'm not convinced at all and don't want to take unnecessary hormones without good reason.

I feel sure that there's something going on related to absorbing nutrients and something neurological. Although I'm hypothyroid I've always been skinny and tend to lose weight if anything. The rest of my family are hypothyroid but overweight, except for my dad who also lost weight and passed away due to undiagnosed severe hypothyroidism and anemia. I've been tested for Coeliac but came back normal.

Sorry, it was as long and muddled as expected! :o(

[Kangagirl]

Hi Cathy

I personally thought your post was very clear and lucid, and not muddled at all! I also tend to get carried away when I write and then get embarrassed about it.

I'm sorry I can't answer most of your questions - hopefully somebody a lot more knowledgable will step in and advise you. I just wanted to mention an item I saw on TV recently where a GP in Durham (I can't remember his name off the top of my head, but he is mentioned in the book 'Could it be B12?' - which is a very scary but valuable read by the way), who treated a young woman with total alopecia with B12 injections and her hair grew back.

He was hounded by 'the establishment' and forced to stop the B12 - her hair fell out. He was exonerated - and with B12 injections again, her hair grew back.

I does seem very clear that the sublingual B12 was working better than the oral, so it makes sense to try that again ASAP if you can't get the jabs, whatever the GP says. It seems very difficult to get injections - at least on the NHS - unless you have PA, so might be worth an IF test, although I understand the test isn't very reliable.

I have been getting dizziness and the 'delayed action' thing with the eyes/brain, though yours seems more severe - it's very unpleasant. I'm also very thin (although hypothyroid). My GP is no help whatsoever. My B12 is 'in the grey zone' at 409 but I feel it is far too low and am trying to supplement with sublingual lozenges and a B12 spray, as I think I may have an absorbtion problem (I have many food intolerances).

My ferritin is exactly the same as yours, but I have no idea what to do about it as I can't tolerate the ferrous sulphate. I have seen ferrous fumerate recommended but ferritin seems a very difficult one to raise, There is also an issue with iron and conventional hypothyroid medication, which if I understand it correctly, means they have to be taken several hours apart. You may want to check this with a question on the Thyroid UK forum. (If you haven't already) There are some very helpful and knowledgable people on there. (Also ask about the B12)

I found that HRT (patches) worked wonderfully for me in stopping hot flushes, but didn't help with anything else.

I'm sorry I can't help with your other issues as I don't know enough and wouldn't want to advise you wrongly. Just wanted to tell you the few scraps that I do know.

I do hope you are able to get some help that actually works for you.

Now I'm going to worry that I wrote loads and didn't tell you anything!

Kanga x

[Kangagirl]

I don't mean to cast any doubts on the expertise of this forum by mentioning Thyroid UK - just trying to help.

x

[manyarecalled]

You have 2 problems .

(a) you have a typically ignorant doctor , and

(b) he/she is an idiot

it may be quicker to change doctor than try to educate the doctor.

you do not need drugs , you do need a vitamin B12.

first off , if your blood serum level was 169 , you should have immediately been put on hydroxylB12 ( in the UK)in a course lasting 6months , followed by injections at least every 3 months ( he/she can give them every month).

if you have PA , rather than B12 deficiency due to something else. you cannot absorb B12 orally, due to lack of Intrinsic Factor. if you don't have PA , and the doctor obviously doesn't know whether you do or not , you will only absorb 1%of the amount you are taking orally , so you need to take 3mg or 5mg tablets.

preferably take both methylcobalamin and dibencozide( adenosylcobalamin ).

regarding blood serum levels , those e.g. in the arm are different from those in the brain/spinal chord , so the Japanes say that the normal range is 500-1300.

I am told that spatone is the preferred form of iron to take. it is best to take a folic acid supplement as well , to be on the safe side.

remember , you are the expert on how you feel , not a doctor ( if he/she justifies the title)

[ribbon in reply to manyarecalled]

I couldn't agree more. 'Educate your doctor' or try another one - how well I know that dilemma. Well said.

[CathyT]

Thanks so much folks for your really helpful answers!

I do use Thyroid UK and other forums and I'm always amazed that people are so helpful to strangers and knowledgeable. No doubt because we all know how hopelessly alone we can feel with these conditions when so many doctors are unknowledgeable and unhelpful!

Kanga, thanks, you've just reminded me about that GP (Dr Chandy, isn't it?). I've done so much research over the years trying to get to the bottom of the health woes but my muddled brain is hopeless at remembering anything and for the life of me I can't document anything in a logical, retrievable way. (Used to be so good at that sort of stuff as a research student but useless now). I'll check out Dr Chandy's stuff again.

Manyarecalled, thankfully I've got another GP now (the muppet left recently). She seems really patient and understanding so I've got my fingers x'd that she'll be a good 'un but I haven't tested her limits yet! I've got an appointment with her in 3 weeks so will ask about testing for IF then.

That's good to know about the 1% absoption and types of B12. The muppet GP had initially mentioned B12 injections when my level was 169 but he wouldn't do so until I'd tried supplements first as I was veggie at the time. He cheekily commented that it was my own fault if I wasn't eating meat and that an occasional steak was what I needed. Ironically, the supplements (and eating meat again, yuck!!) increased my levels to "within normal range" (i.e. over 180!) so he then refused injections as it was "normal".

If the new GP isn't helpful re B12 I may have to stop all B12 supplements just so that it'll fall low enough for injections. Would be a desperate last resort though, as I suspect I'll start fainting again and it'll confuse thyroid assessments if I let myself go backwards whilst we're still adjusting thyroid meds. I'm just so worried about the scrambled egg that I have for a brain and need to get my life back on track. At least if I could get a loading dose I may be able to keep it at a reasonable level with sublinguals but I was taking squilions of the things to try to raise it myself and that's not sustainable.

Kanga, we do sound rather similar in the skinniness and deficiencies. I really hope you're not struggling as much as I have. Life has just fallen apart with all this. I'd take HRT if I was having flushes and mood swings etc but I'm sure that's not the problem. My endocrinologist is a nice guy and been good at working "with me" so far but he's insistent that menopause has got to be a significant factor, due to undetectable oestrogen and FSH level of 117 (apparently this indicates at least 20 years post-menopause, despite being 46 and still pretty normal cycles!). I know he's trying to help but I just feel that menopause is natural and I don't want to mess around with hormones unless I'm still having bad symptoms after other deficiencies are ruled out.

Manyarecalled - do you know whether Spatone is only on prescription or OTC? Sounds like it might help both Kanga and me.

[ribbon in reply to CathyT]

I'm in similar position, but am taking hrt because I believe the benefits outweigh the risks and I have a good gynae who believes there's too much scaremongering going on. However, you must do what you believe. I would say though that PA is known to affect the brain and pituitary signals which can messs up your endocrines and hormones big time or at the very least the readings can be affected so do try to get your B12, folate and ferritin fixed. By the way, I get Spatone over the counter in Ireland. It's common for coeliac disease and PA and thyroid to go together. I have all three and 14 yrs of dreadful ill health and deterioration. I have had to fight for diagnosis and treatment of all three. I have lost years of productive working life and the chance to have a baby, but thankfully I have a lovely husband who is with me all the way. You have my sympathy. It's ludicrous that we have to walk on eggshells with these gate-keeper medics who are often not the brightest of their graduation year!

[ribbon]

Hi, I was misdiagnosed by bloodtests as non coeliac, but on pushing doc, I got OGD test (camera down neck and biopsy of gullet - quick procedure under sedation) which showed I was severely coeliac (meaning the villi - the little hairs in the gut that absorb minerals & vits were withered badly). Sometimes you get false negatives. You must keep eating grains and cereals and bread etc (they contain gluten) when you're being tested otherwise the antibodies won't show because there's no gluten in your system for them to fight. Only cut out grains (gluten) when you have your diagnosis. I don't know much about the PA as I've only recently been diagnosed. I'm learning a lot here though thankfully. Good luck to you. By the way, being skinny can be a sign of coeliac. Having said that you may not be. But get tested properly. Exaggerate your symptoms after eating grains if necessary just to get the test. You just need to rule it out.