Totally worn out....advice please.

[hazeljane]

Well, I don't know where to begin. The start is probably best so apologies for the long post. Following the birth of my 2nd child in Oct 2012, that's when my life really took a nose dive. My pregnancy was ok, I was desperately tired but I'd put it down to the pregnancy. After my daughter was born, I felt like I'd been hit by a train....normal I know only this feeling never left me in fact it only got worse. At my 6 week check up I told the nurse how I felt and was told "go home and have a good cry for yourself" -wonderful. I went back and forth to my GP for months and was told I was suffering from post natal depression....I was depressed alright, because I couldn't function but I knew in my heart of hearts it was not post natal. I couldn't even manage to hold up my daughters head when feeding her.

So, in March of this year I rolled up my sleeves and went round to see my GP yet again! I was on a mission!!! Thankfully a stand in doctor was there that day and only for her...she LISTENED to me, took bloods and called me the following day to tell me "congratulations you're not going crazy, you have a problem with your thyroid"....I hadn't a clue what that even was but I went round to have a chat with her. I now know why she was so shocked at my blood results....TSH <150 (couldn't be read) T4 2 cholesterol 12.8. It also showed that I had the antibodies for a b12 deficiency but that for now I was fine. My family history is FULL of auto immune disorders : diabetes, rheumatoid arthritis etc etc.

The last few months I've been up and down and honestly feel no better. I'm on 100 levo one day and 125 levo every other day. My TSH is now 1.8 and t4 is 18 my cholesterol is thankfully 5 without any medical intervention. But I still feel poo...I'm so sad at the moment and genuinely terrified. I've given up smokes, haven't touched alcohol or caffeine, started yoga and I still am no better. Am I just full of anxiety/depression or is there something else I can ask of my doc???? I am tired, dizzy constantly, joint and muscle pain, adrenaline rushes, weakness in my legs and left arm. I have 0 energy, when I'm walking I feel my legs are going to go from under me. I feel constantly shaky but my hands are not shaking. I'm tense and going from freezing to boiling in the blink of an eye....heart palpitations....crying, a lot of crying..I want my life back please. I have already lost this last year and it's ruined birthdays, holidays etc and I don't want this for myself or my family anymore. I'm afraid I'm going too loose my mind and my partner in the process...please help. Thank you all

[Hidden]

Well, the answer could well lie in one of your comments above -

"It also showed that I had the antibodies for a b12 deficiency but that for now I was fine."

Please get a copy of this result along with any other tests they may have done, i.e serum B12 and folate. If you tested positive for intrinsic factor antibodies then you have pernicious anaemia and need treatment (for life). You may also have tested positive for parietal cell antibodies. Them telling you that for now you are fine is the most ridiculous thing I've ever heard, clearly you weren't fine then, and are not fine now.

Visit the following 2 websites for further information:

B12d.org

pernicious-anaemia-society.org

Hampster

[hazeljane]

Hi hampster1

And thank you so very much for your reply I really appreciate it. I have tested positive for parietal cell antibodies...I remember seeing that on some blood work I had done.

I am by no means "fine" not even close I'm sorry for the whinge but I'm at a very low point in my life at the minute and feel totally out of control of my body.

My GP told me that I WOULD develop a b12 deficiency but that my b12 levels seemed ok for now....my dad has pernicious anaemia and he's told me just like you've suggested that this could be why I feel how I do. I'm having a rant now, but I had bloods done 4 weeks ago, I have since gone to A&E because I felt so bad and they took bloods....and nothing. "You're fine" or " it's anxiety" is the usual.

I have an appointment with my GP for tomorrow morning and I'm just going to lay it on the table....I can't thank you enough for your reply and helpful info, you've given me a reason why I am feeling as I do and that's not often done thank you

[Hidden in reply to hazeljane]

It irritates me immensely that they can't see and treat something that's staring them in the face, you have positive antibodies, you have a family history, you have a related autoimmune disease, and, most importantly, you have symptoms! The serum B12 test is absolutely useless, the range is set way too low and the test itself is suspect. I bet if you asked your GP what your serum B12 result actually was you'd be languishing somewhere near the bottom of the range. You might want to show your doctor the following things:

A warning about the test itself:

ukneqas-haematinics.org.uk/...

Some studies on functional B12 deficiency (i.e. normal serum levels):

ncbi.nlm.nih.gov/pubmed/191...

aahs.org/medstaff/wp-conten...

And tick off your symptoms on these 2 lists:

pernicious-anaemia-society....

b12d.org/b12-signs-symptoms...

Finally, don't let him fob you off with B12 tablets. The standard treatment according to the NICE and BNF guidelines is as follows:

cks.nice.org.uk/anaemia-b12...

If the doc still refuses to treat then there is lots you can do to help yourself, but go and see the doc first.

H x

(ps If you use the yellow "reply to this" button the person you're replying to gets an email )

[Hidden in reply to Hidden]

Sorry, forgot to mention, very important to also get tested for folate, iron, ferritin and vit D. These often low as well. x

[hazeljane in reply to Hidden]

Hi Hampster1,

Thank you so much...I'm a stranger to you and you've gone out of your way to help me I'm very grateful and I'll be sure to keep you posted. I'm all fired up for my GP visit tomorrow and have lots of info thanks to you....

Hazel xxx

[Hidden in reply to hazeljane]

Well, I've been there and done that as it were, and it pains me to see others being mistreated as I was. I think that's true of lots of people on the forum, no matter what their health issues are. Good luck, and definitely keep us posted. x

[hazeljane in reply to Hidden]

Sorry hampster1, just 1 question if you don't mind. If my doc for whatever reason says my b12 is fine, would it be silly of me to ask for b12 shots on a "trial" basis???? Can you over foes on b12???? Sorry I'm clueless about all of this and I just don't want to make a fool out of myself....my lips are all tingling and a strange numb-like feeling in my leg and arm...has me driven to distraction and I am a little scared too xx

[hazeljane in reply to hazeljane]

*dose not foes lol sorry x

[Hidden in reply to hazeljane]

You should definitely ask for a trial, and B12 is safe. Here's one more link that might help you from the B12d.org website:

b12d.org/book/export/html/1762

And a link to my story on the PAS, as I see some parallels with you:

pernicious-anaemia-society....

[Hidden in reply to Hidden]

Meant to say please don't worry, with enough B12 you can reverse back out of these symptoms. xx

[hazeljane in reply to Hidden]

Thank you...millions xxx

[hazeljane in reply to Hidden]

I'm just reading your story...firstly I'm so sorry you had to go through all you did....and thankful you're on here for your wonderful first hand advice.....I ended up in A&E with a chronic sinus infection and numbness in my hand and legs....very similar xxx

[Marz]

...you could probably do with knowing what your FT3 is as well - is your T4 converting into the ACTIVE T3 - which is needed in every cell of your body.

Sorry you are having such a rough time - stick with this forum - keep posting - and everyone will soon have you sorted !

[hazeljane]

Thank you Marz...that's on my list for tomorrow. I will be sure to keep you all updated....fingers crossed

[GeorgieB]

I sat and cried for you (and for myself), I would love to give a brilliant piece of advice.. But please keep you chin up and hopefully you, me and all other sufferers will be taken seriously one day x

[msglutenfreeuk]

I would also ask for a celiac test or get your food intolerances tested if you can. I am hypo and was diagnosed with gluten intolerance 2yrs ago, I didn't have the usual tummy issues, but headaches, tiredness/exhaustion, muscle pains especially shoulders and neck, brain fog. Within a week of cutting out gluten - wheat, rye, barley - I felt like a new woman. I didnt have the test at the docs tho - you have to eat gluten for quite a while and I couldn't face that. From what I read though, you can test negative on the doc test but still be intolerant. The gluten free gorillas forum on health unlocked is a really useful source of info

Hope you find some answers

Sam

[hazeljane]

Hi all...and thank you all so much for your support and kind words. I went to my doc this morning. This is my "new" GP I've only recently changes as my last GP blamed everything on anxiety =/

She agreed to give me b12 injections starting tomorrow 1000mg per week...is this enough or should i take something with it???? Also, should i be taking folic acid too???? She did say tho that i was "well within range" but agreed to go ahead none the less. But should i be treated if i have parietal cell antibodies even if my b12 is "within range"????

She's also going to take bloods tomorrow and do a full auto immune screening which im happy with she also forwarded me for an MRI too.

I still feel poo but am hopeful..thanks you all so much for your support...it means so much.

Also msglutenfreeuk thanks for your input...i had celiac screening done and it cane back negative =/ but it might be worth my while trying the diet out do you think????

Cheers everyone xx

[Hidden in reply to hazeljane]

OK this is VERY important - make sure they take the blood for the tests BEFORE they give you the B12 injection tomorrow. Having the injection first can mess up the intrinsic factor antibody test result (assuming that is one of the ones she's testing). You'd be surprised how many surgeries give the jab first, and then take blood second to test B12 levels!

And I would say no, one injection a week is not enough. You need to always start with the loading dose of 6 injections spread over 2 weeks, this is clearly stated in the BNF section 9.1.2, which you might like to point out to her (I did this with my doctor)! I don't know how or why they decide on these random injection schedules.

And you must ask for copies of your test results to know exactly what your levels of B12, folate and ferritin are. I would say if she really thinks you're "well within range" then why would she give you the injections? I would put quite a lot of money on you actually being low end of the range. You need to get copies! But fantastic you have got this far.

H x

[hazeljane in reply to Hidden]

Hi Hampster1....

I'm pleased too...and yes I thought the same as you...why give me the injections if my levels where ok. I pointed out the parietal cells and the family history (father, aunt, brother). To be fair I didn't have to argue.

Thanks for the heads up I'll be sure to get the bloods done first anything I should expect after the first shot???? Also, I don't know if I'm right in the dosage...she said "once a week for 4 weeks" to see how it goes...but the prescription gave me 10x1000mg "viles" so that wouldn't make sense :/

I'll be sure to ask for a copy if the lab results next time round...today was just a little overwhelming lol I live in Ireland so I don't know if the same rules apply for initial dosage????

Again...thank you millions for your reply

H xxxxx

[Hidden in reply to hazeljane]

Here's a little link about what to expect:

b12d.org/b12-injections-wha...

Would recommend a read around the B12d.org and PAS websites, lots of info over there. Don't quote me on it but I think that they do refer to the BNF in Ireland, might be worth asking the doctor or nurse if they use it. Sounds like they do from this:

hse.ie/eng/health/az/A/Anae...

H x

[Hidden in reply to Hidden]

You have to copy and paste the last bit of the link to make it work

[hazeljane in reply to Hidden]

Oh also, should I take frolic acid???? Thanks x

[hazeljane in reply to hazeljane]

Haha silly predictive text lol FOLIC ACID although I wouldn't mind a frolic at the minute lol xx

[tegz in reply to hazeljane]

Ireland's a bit far, H

[Hidden in reply to hazeljane]

Frolic acid sounds like something we could all use right now! You really need to know your level of folate before supplementing - ask tomorrow, get your number and the range. Anything in the bottom half of the range could probably use a supplement. x

[hazeljane in reply to Hidden]

Hi Hampster1....

I'm just back from my GP following my 1st b12 shot...I feel a bit off afterwards...a little tingly in my head, feels strange. Anyway, I got a print out of my blood work. It may as we'll be in another language but you may be able to help me figure it out???? Ok so there's so much on here I don't know where to begin but I do remember you mentioning:

Ferritin: 37.2 range 10-322

Folic acid: 6.8 range 2-20

Vit b12 421.0 ranges:

<160 deficient

160-240 intermediate

240-911 normal

Also I don't know if this makes any difference but I had an elevated bilirubin level 20.0 range 1.7-18.7 I know that's something to do with the stomach isn't it????

If there's anything else you need just ask and I'll have a look,

Thanks again for everything

Haze xx

[Hidden in reply to hazeljane]

Ferritin is on the low side, you probably want to get that up to around 80. I just take Spatone (sold in Boots), one or two sachets a day. Your folate is a little low, you might want to supplement that as well. Some recommended supplements on this page:

pernicious-anaemia-society....

Your B12 isn't as low as I was expecting, but just goes to show hoe useless the test is.

Increased bilirubin is most definitely associated with pernicious anaemia, do you have a yellow tinge to the skin? It can cause jaundice, it's a liver test I think.

patient.co.uk/doctor/Pernic...

"There may be an increase in plasma unconjugated bilirubin due to increased destruction of red-cell precursors in the marrow."

I'd be interested to know what your MCV and RDW results were?

H x

[hazeljane in reply to Hidden]

Hi Hampster1,

Yes, I thought my b12 looked fine too...odd :/ my MCV result is: 86.2 range 80-99 and RDW 12.8 range 11.6-14.5.....both seem within range right???? As for the yellow tinge to my skin, I'm not sure lol sorry to sound so silly but I'm very sallow skinned but I suppose I must not have it if I can't notice it?????

Thanks so much xx

[Hidden in reply to hazeljane]

Yes in range, but probably that's because of your low iron. B12/folate deficiency causes high MCV, iron deficiency low MCV, so if you have both types of deficiency the MCV ends up in the middle somewhere.

I guess the best test is going to be how you respond to the injections, I'm just not sure one a week is going to be enough of a trial. Fingers crossed x

[hazeljane in reply to Hidden]

It's all so confusing isn't it lol....I'll give these injections a chance it's 1 per week for 4 weeks and then 1 per month after that....it doesn't seem enough should I really need it but it may just be what I need fingers crossed....thanks so much for everything I really appreciate everything xxx

[Hidden in reply to hazeljane]

It may well be enough, and 1 per month maintenance is pretty good (you'd be lucky to get that in UK, usually 3 months). Take care x

[hazeljane in reply to Hidden]

Hi hampster1...me again =) im just back from my doc and my b12 has dropped to 317...this was from the blood test taken before I got my first b12 shot...its getting lower as am I =( just said I would run it by you and see what you think...thank you xxxxx

[Hidden in reply to hazeljane]

How are you feeling? I wasn't sure once a week would be enough...did you mention the loading dose to the doc? Have a look all around this link, the documentaries are really good:

b12deficiency.info/

There's a Facebook page you can join for advice/support, or the PAS:

b12deficiency.info/very-use...

[hazeljane in reply to Hidden]

Thanks so much for your reply...if im honest I don't think my anxiety is helping much...im just totally worn out and feel sick. I'm on my 4th antibiotic for a suspected sinus infection but now im not sure if its even an infection. My neck, ears, face and under my tongue oddly are sore and im still feeling off balance. It feels like im being pushed down if that makes sense??? I feel weak and when I get this feeling of passing out anxiety/panic strikes. I'm sorry for moaning I really don't want to but I am so unhappy at the min. I feel so alone even though I have a great family I feel I've over done the complaining. Thank you for listening...i never mentioned it to my doc bout the losing dose, I only seen a nurse today for my 2nd shot but ill be sure to say it to her next week. Thanks again xxx

[Hidden in reply to hazeljane]

Are you taking folate and iron? It is tough when you start B12 injections, its not a magic bullet, it takes time and lots of B12 for our bodies to heal, and its common to feel a little worse at first. Please come and join us on the Facebook page, we have people from all over the world, bound to be someone in Ireland that can help re Irish guidelines.

[tegz in reply to hazeljane]

You don't need to be Celiac to have issues..Gluten is the No1 culprit in diet.

drhedberg.com/2011/02/10/au...