I have Autoimmune Hepatitis, Lupus, Sjogrens Syndrome, Menieres Disease, Fibromyalgia, Diabetes II for which I recently started Metformin, and stomach problems.
I was diagnosed with AIH in 2001 Lupus(self diagnosed) in 2004. Since being given to a rheumatologist who investigated nothing in all that time, I fought for, and got a referral to an eminent specialist in Lupus, in May. Her four page report, blood tests and dnew diagnoses (SS, Fibro) astonished me and showed the depth of the Rheumy's neglect of me. Result, you would think. No. I have subsequently had to fight for investigation of anaemia, ferritin level low, red blood cells bit large, haem at or below base level, which has still not happened and for investigation into stomach problems. Fullness, slow emptying of stomach and transit, bloating, nausea. I also have peripheral neuropathy. I can not stand in darkness, or trying to put on my knickers standing up, tinnitus - bad, all Men Disease symptoms. In taking my hubby with me to my last gastro apt the gastro decided on a CT scan. She raised the possibility of Coeliacs. Since the CT I have gone gluten free, 9/9/16, which has greatly relieved my bloating but not cured it. My blood test was ANA negative for coeliac, but that is not relevent to me now.
Almost a month later I received a letter today from the gastro which I have been holding my breath for.
It contains four, yes, four lines. No ref to Coeliacs. Nothing serious to report! Some diverticular disease, ( treatment? extent? life change-diet?) and a repeat ultra sound on known cyst on an ovary recommended.
I have changed GP within surgery many times after being disrespected, ignored, patronised, laughed at during my attempts to get the May report adequately investigated. My research on subjects been referred to as "Googling".
I am truly in despair. I now think I may have PA, given all my symptoms and the unutterable overlying tiredness which robs me of any energy at all. I am used to good old fatigue. Fatigue, I laugh at you! I had fatigue from 2001 and could manage my meagre resources. Since february I am flat. Fat with bloating, less since going gf but I feel so ill. Oh and Im veggie.
Recently, I went to the latest GP and begged for a short course of steroids because, I just wanted to go asleep and not wake up. It give me brief respite from the overbearing tiredness but since it has left my system I am bereft. Also, most notably, I am so damn irritated with everything and anyone. I nearly threw my darling, beloved ... ipad across the room the other day. Now that is serious.
What should I do? I have been reading here and have read links etc and started taking mithyl B12 but have since realised, having been on PPI for years, that that is foolish and have stopped. In the good report, my B12 was 264 but when asked useless Rheumy for a boost, she flat refused saying it was in range.
Sorry this is so long but I once thought I had fought and succeeded only to have doors slammed in my face again. Thought Id found a gastro who 'got me' only to be short changed, and no follow up apt to review results.
Should I get private IF blood test? Should I get a private consult? Who shd it be with?Is there another test I can get, given my recent attempts at supplement? Or should I just get the injections off the internet, add the extra vits advised on here and treat myself to see if it will relieve all, most, some of my symptoms, especially this godawful tiredness, given patience and awareness of side effects etc?
Please help. I will answer any questions. I have many symptoms but as you see some cross over, even though I have meds for each AI condition. One thing I didnt say. I was driven to Lupus specialist because all I read led me to believe it affects so many things IT was cause of my ills this year, But in May, my Lupus was quiet. I have Azathioprine for the AIHep, but it is also the drug of choice for most AI conditions. How come I keep getting more???
Sorry, again, off PA topic. What do you think guys? What would you do?
All replies deeply appreciated. Been kicked too often now, running out of all oomph.
Many thanks for reading all this, you stars, your eyes must be tired !
Take care
Love
Footygirl
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Ps add the fog memory concentration probs plus bed, no sleep / sleep 14hrs awake no diff to going to bed/ depression, I think/restless leg syndrome/no appetite since Feb, only eat bits as hubby insists.
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Footygirl
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With so many issues I cannot believe they have not checked your Thyroid. These are the tests you need - TSH - FT4 - FT3 and the anti-bodies ANTI -TPO and ANTI-TG. As you mention many conditions overlap however there are over 300 symptoms connected to low thyroid.
I suugest you obtain your blood test results from the surgery to see what had been tested. It is your legal right to have them and also so you are able to monitor your own health.
Private testing is available through Thyroid UK with Blue Horizon.
Thank you Marz for your kind reply. No I had not thought of Thyroid. I should have done as it is about the only AI disease left. I may well get it done privately as I doubt, as you say, that my General Prats will ok the tests. I appreciate your time and advice and will follow the thyroid link. No medic knows as much as we AI warriors! If only they did.
Thanks for the thyroid test info. I shall have them done privately. I shall request my notes to date from last notes I have to check the blood tests to date.
Horrified by your history, and yet many parts of it are familiar to me. I feel very angry on your behalf that you are dealing with several serious AI conditions, and yet you are receiving such negligent, ignorant treatment from GPs and 'specialist'. I understand why you are feeling punch drunk, after all you've been through. Nevertheless, with your husband's help perhaps, you may wish to state your concerns in a formal letter to your local practice, to be placed on your medical file. Sometimes that gets their attention.
Marz is quite right to suggest thyroid tests, but with GPs like yours, they will not do all the ones required - even the best docs fall short on the thyroid. Post your results in the Thyroid UK forum, another HU community, and you will get good advice.
I would also suggest that many of your neuro problems are due to low B12. Others here will explain why, but I'm afraid I've had a sleepless night, so can't summon the details just at the moment. No doubt another member will be along to advise, but I'll check later anyway.
Thank you Hillwoman for your kindness. If I ever get the energy I need, I will try to publish some of the things that are said to us. People would be bored after page one but may be the sheer volume would shed some light on our constant battle.
I did write down my outrage at being treated disrespectfully etc to read to the senior GP but he would not hear me out. He had already done the ref to the Lupus specialist so felt hed done enough. My husband requested my back notes for the year, as my carer, and I was truly astonished as someone said, to find all sorts of investigations requested, blood test follow ups etc all ignored! I put my hope in the specialist who came through with two further diagnoses and lots of suggestions and requests. Barely one has been done as I said.
I am on the Lupus site, which is equal to this in the quality of people who care and the depth of knowledge shared and advice given. I too was sleepless that night. I hope you have slept since.
I will try my last Great Plonker for the injections, but doubt it will work
You have so much to deal with it's no wonder you have run out of oomph, I'm sure most of us on here can relate to that. I say my get up and go, got up and went and never came back.
Have you looked at lists of b12 deficiency symptoms?
In the UK, people with B12 deficiency symptoms are supposed to be treated even if B12 levels within normal range. Google "BCSH Cobalamin and Folate Guidelines" and see page 29, a diagnosis flowchart showing the process doctors should follow with people who may be B12 deficient. Page 8 gives details of UK B12 treatment. I read the whole document and then gave a copy to my GPs.
If you look at the pinned posts on this forum they have a lot of useful info on PA and B12 deficiency. I take a copy of the summary fbirder compiled to my appts. Lots of quotes that can be very useful if faced with medic who does not understand B12 deficiency. Link to his summary in third pinned post or on his profile page.
Misdiagnoses
B12 deficiency can sometimes be misdiagnosed as another condition.
One thing I learnt was to always get copies of all my blood tests with reference ranges. I look particlulary at B12, ferritin, folate and full blood count (FBC). Sometimes I was told all my results were fine/normal and then found out some of them were not fine/normal when I got a copy. Some surgeries have online access to a summary of records.
Some people on this forum get a complete set of their medical records, can be interesting to see what has been written in the past. There have been people on this forum who have discovered that they were diagosed with PA in the past but were not told at the time of diagnosis.
UK B12 websites
The PAS are helpful, sympathetic and a good source of info.
"What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper, Martyn Hooper is the chair of the PAS. I gave a copy of this book to my Gps. It's up to date with current UK guidelines.
"Could it Be B12" by Sally Pacholok and JJ. Stuart. Very comprehensive book about B12.
Hughes Syndrome
As you have lupus symptoms, I wondered if you had ever been checked for Hughes syndrome.
Thank you Sleepybunny for all that information. I shall print it all and take it with me to my next appointment. Ishall try once more for help.
As I said above in my reply, I had my notes with surprises. I have read the symptoms of B12 and now do think I have most of them. Unsteadiness on my feet and falling over in complete darkness too.
I shall get the books and read them and learn as much as I can despite the ignorance of the Great Pigs I deal with.
Can you advise me where to get the B12 injections if all else fails?
Hi and good morning Footygirl you say "Oh and Im veggie." and "been on PPI for years," yet you say that your "B12 level was 264" - was that tested before or after you "started taking mithyl B12 "? but whichever, it's not particularly high. Do you know what your serum Folate level is?
Vitamin B12 can only be sourced naturally from foods such as red meats, fish, poultry, eggs, dairy produce and fortified soy and cereals - oh and Marmite. I don't know which of these you preclude from your diet.
B12 needs Folate to process it, but you probably get plenty of that from your diet.
B12 needs you to have strong acid in your stomach to "grab it" on its way down - the PPIs reduce acidity thus affecting absorption.
I'm not a medically qualified person and there are others on here who will be able to give you good advice, but personally I think you need to ask your doctor for a trial of B12 injections which may well help with some of your other symptoms.
I eat eggs cheese milk an occasional piece of fish and all fruit and most veg and I am now gluten-free.
The B12 was entered by myself on a routine blood form. I didnt know that I should have put "active" before it. I had not taken any supplements at that time.
When tested in May my feritin was deficient (5.1 (7-90) "with normal B12 and folate".) But given score in June 246, what did they rate B12 in May?
I have stopped taking the supplement and now PPIs today too to create the acid.
I will ask for the injections but dont hold out much hope. Would you self inject?
I had a blood test a few years ago and was told my b12 was normal as well, I was experiencing all the symptoms of B12 deficiency. I was already treated for thyroid. I was lucky I was living in Cyprus then and I took my results to a natural GP. She told me although the B12 was in range my platelets were large which is a sign my body was struggling. She put me on injections immediately. I also got ndt from her. I still do although back in the UK as I don't trust GPs here. My advice, do your own tests and then take it from there. Good luck x
Interesting you are able to source NDT from Cyprus. I live in Crete but not able to purchase here. I am T3 only. Perhaps you could send me a Private Message as to which one you are taking and the source. Thank you .... So glad you are receiving the treatment you so deserve.
Like you I was told my B12 was fine for 40 years - around the 300 mark - after having the Terminal Ileum removed when I was 27. This resulted in a diagnosis of stenosis and had surgery in Germany in 2007. Methinks it could well have been a mis-diagnosis and that it was the B12 deficiency de-myelinating the cord. I have been having weekly B12 injections for the last 3 years or so ....
I'm glad other, more awake members of the forum have given you plenty of detailed advice.
Another thought... years ago, when I was being tested for Sjogren's, SLE, etc. (I appear to have the former), I was told that a new standard of treatment was being introduced for SLE and Lupus, and that all patients with these diagnoses would have the right to ask for referral to their nearest specialist clinic. I have no further information I'm afraid, because I decided to discharge myself from the rheumatologist's care, but there are other communities on HU who would be able to advise you.
my routine apt with my useless rheumy who said my B12 was normal, finished with my showing her the four page report from the Lupus specialist, gave her it actually. She was not impressed and refused to investigate or prescribe anything. She then demanded that I choose between her and Lupus Specialist as I couldnt have both. Which I know is rubbish. Subsequently I found out she had silently removed me from her service. The Specialist has agreed to be my Lupus specialist and my rheumatologist, though in reality communication, some 30 mile distant, has not been good.
I have not heard of any new treatment, of any standard, and Ive seen the lot.
Would you self inject? Given the brick walls I face, shall I get IF and those thyroid tests done privately, then take the proof to the Gormless People?
Words fail me. You really have drawn the short straw with all your medics apart from the Lupus specialist. I would stick with that one, even with the travel involved. I live out in the sticks and have to travel 30-40 miles to get to the main regional hospitals.
I self-inject. Even though I have a PA diagnosis, the local practice withdrew my treatment some years ago. I had a year without treatment and ended up in a very bad way. A doctor at a private clinic I attended for another problem offered to help me out. When he retired, I had to learn how to do it myself, with help from the good people on this forum.
I haven't caught up on sleep, so I'll come back to you tomorrow with some sources of injectable cobalamin, if no-one else does in the meantime.
When I was diagnosed with Menieres Disease had MRI to identify crystals in inner ear. Had standard tests for balance etc, failed miserably prescribed Betahistine x3 a day, discharged back to Grotty Punks within 2months. 2008. No one has referred to it since. Cannot look up or turn round quickly. Have to watch floor for unevenness or wall for security. Not heard of Romberg test. Doesnt mean I havent heard of it or had it. Memory failings.
Will follow your links.
Thanks so much for all your input on my behalf
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PS yes done that, failed. Cant do toe to heel walking, cant do extended arm, fingertip to nose. Have to have iphone on me 24/7 for light at night though I have night lights also. Trouble is, menieres similar. Do you really think I can ask to see one? Ha. That made me smile. Ill try thyroid first.
Seriously, thanks
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PS AGAIN. Awesome answer from Poppy. Described me too as I often list to the er, er, left I think. No one asked about that before, only just remembered it. Wow
It might be worth talking to PAS. Contact details in my post above.
Do you have a strange gait? That can be a symptom of b12 deficiency.
Untreated or inadequately treated b12 deficiency can lead to permanent neurological damage. Some people have developed sub acute combined degeneration of the spinal cord...it happened to Martyn Hooper., teh chair of the PAS. If you join PAS there is an article about SACDS in the PAS library section available to members.
Good morning, I hope you slept a bit better last night.
Just thinking about sources of injectable cobalamin...are you able to get the various blood tests done in the very near future? I believe the main ones can be done via a pinprick test at home. B12 treatment will affect the test results, so it's useful to have a baseline, especially with antibodies and certain metabolites, which tend to reduce after treatment.
So, in your position, I would suggest:
the 'active' B12 test
gastric parietal cell antibodies (GPC)
intrinsic factor antibodies (IF)
homocysteine
methylmalonic acid (MMA).
If you haven't already done so, have a look at the pinned posts for info. If you need any further info on these tests, or on self-injection, it would be best to post a new question on the forum.
£30 off this month! Seems a good deal. I've never used BH but members on the TUK forum really rate their service. Do it as early as possible in the morning, before food, drink and any meds, to get the most accurate picture.
I have only just come across your message . I want to say how much I feel for you . That in itself doesn't really help . But I would like to pass on a tip to you that has really helped me , regarding the bloating and tummy issues . I had the tummy problems when I found out that I had PA . I went to a gastroenterologist who was useless. I had to deal with it myself. After much research I came to the conclusion that lack of stomach acid ( which you will also have after using a PPI ) was the cause . The stomach flora was in a bad state, as stomach acid keeps the flora happy ! To restore this state of affairs I used a water based probiotic calledSYMPROVE . It was really fantastic . In days the bloating stopped and also the nausea . I used Symprove for about 4 months then gradually reduced the dose . I now eat a portion of home- made ORGANIC RAW SAUERKRAUT every day . I have no more tummy problems ! I hope that this helps you , My very best wishes to you !
I got SYMPROVE by way of the Internet. It is expensive. I just buy the best offer available . . Amazon also sell it ,also direct from I can only say it been marvellous . So marvellous that I don't need to take it anymore ! I also think that avoiding wheat products is a good idea . Best wishues to you .Footygirl .
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