Help please. Need direction.

[Jaylou82]

Hi for 15 yrs I have been B12 def. I've been on monthly injections this whole time. I also have to very often have loaded injections. My Gp has never been concerned about this. Even though I've asked a number of times why! Fast forward to the last year or so. I now have low iron, was given folic acid to take. I started getting stomach problems. Which they thought was a ulcer, test came back Neg. so I given omeprazole to take twice a day. Still suffering with stomach pain. I had bloods done 3 weeks ago. On routine app yesterday with Gp I broke down saying I can't cope with how I feel. I have the worst lower back pain that has come out of no where, I have never suffered or hurt my back. Pain is so bad I'd rather have a natural birth every morning then to suffer my back. My Gp told me I'm depressed gave me a leaflet and sent me home. I collected my mess from chemist and found she has prescribed me. Ferrous Fumarate 305mg to take twice a day. Also Hux D3 20,000unit to take 5 tablets at once daily. She never mentioned anything about this at app just said pick up a prescription st chemist. Please advice where I'm going wrong ? Am I imagining these problems and assuming my Gp should be doing more when she is. I have blood results if you need them. Didn't know what to post with those. So I happily give blood results on what is needed for further advice. Thank you for all replays. Sorry for long post. Sorry it may not be linked but will mention. My menstralcycle has completely stopped. Haven't had one since November 2017. Never had a problem with it since the age of 13. Every 28 days for 22yrs it's been clock work. May not be related to problems. I have a very large grotire have had for 15yrs. I've never been treated for this. Only ever had 1 ultra sound scan to check all was ok. They did say they would give me a total thyroid removal. But felt that was a bit drastic if they didn't think it was any danger. Although it is still growing.

Bloods:

B12 121ng/L 191.00 - 900.00ng/L

Ferritin 48 ug/l 10.00 - 169.00ug/l

Serum 25-HO vit D3 17nmol/L no range

Serum vit D2 <5 nmol/L no range

Thyroid Antibodies 3kU/L 0.00-50.00kU/L

I also have full blood count results if needed.

[Admin Note: please see blood results in separate post above and reply here]

healthunlocked.com/thyroidu...

[clivealive Forum Support]

Hi Jaylou82 I'm not a medically trained person but I suggest you post your latest blood test results showing the level and also the ranges <from -- to>

If you can get a good quality photograph add it to the start of a new post.

[Jaylou82 in reply to clivealive]

Hi Clivealive I have posted bloods on a new post. Not sure if I have don't it correctly.

[Jaylou82]

Thank you will post now. In a new post.

[clivealive Forum Support]

Looks OK to me and hopefully someone more knowledgeable than I will comment. Maybe it's your low ViTAMIN D causing your back pains?

[Jaylou82 in reply to clivealive]

Thanks for your reply.

[Jaylou82 in reply to clivealive]

So would my Gp be right not to test me for PA ? Has I haven't been diagnosed with anything as of yet. Apart from a grotire 15yrs ago.

[Gambit62 Administrator]

jaylou82 - goitre suggests that there may be something thyroid going on as well as B12 - unclear if you are being treated for thyroid - if so please could you state this. It is really important in trying to interpret results of thyroid tests.

The false menopause could be B12 but could also be thyroid.

If these bloods were done after loading doses and whilst you are on maintenance doses they indicate that you need injections more frequently than you are getting them.

The individual biochemistry of B12 is quite complex with so much variation between individuals and no clear explanation (at present) of why there is so much response - B12 isn't toxic so getting more frequent injections isn't a problem (particularly if your GP is amenable- that's usually the most difficult part) ... and in general testing for IFA to confirm PA is rather hit and miss as the test is very prone to false negatives so whilst a negative is generally a good indication that you have PA a negative doesn't rule it out.

Both B12 deficiency and thyroid problems will cause muscle weakness and muscle weakness can contribute to low back pain - and as the tendency is to stop moving if you have back-pain the weakness and the pain can just get worse and worse in a vicious circle. Has your GP thought about the possibility of some physical therapy?

You say you were given folic acid to treat iron deficiency - is that correct - folic acid won't cure an iron deficiency - the ferrous fumerate would be prescribed for iron deficiency and folic acid would be prescribed for folate deficiency - which is quite likely to be there as well.

The problem that stops you absorbing B12 can also affect your ability to absorb iron and folate and other vitamins and minerals as it can lead to reduced stomach acidity (more or less the same symptoms as high stomach acidity - including acid reflux), so omeprazole will help with those symptoms. However, it may actually be that taking something acidic would be more beneficial if the cause of the stomach problems is low stomach acidity rather than high stomach acidity.

[Jaylou82 in reply to Gambit62]

Thank you for your reply. I have never been treated for my grotire. I've had it 15yrs. I have only ever had a ultra scan done on this. Which was 3 yrs ago due to a rapid growth in it. They offered to remove all of my thyroid if I wanted to. I thought it a little drastic also I thought no I'd rather the devil I knew then the one is didn't. If that makes sense. I'm not sure what each tablet does. I'm just learning differences between ferritin, folate and the others. The folica acid I've been on for a few years. The B12 I've had monthly injections for 15 yrs. I have missed one or 2 over the years. Only ever had serval loaded B12 this had been when my levels have dropped below 109. Being prescribed the B1/ injections isn't a problem my Dr will chuck them at me all day. I just feel my Gp is chucking medication at me but failing to test what is causing all of this. I would have thought she would have looked into this and sent me for test. Has each month goes on it seems I'm getting another problem and another deficeny.

[Gambit62 Administrator in reply to Jaylou82]

jaylou82 - the likelihood is that your absorption problems are all related to PA. As such that means that the underlying cause isn't curable - all you can do is treat the consequences. The current test for PA is inconclusive.

It looks to me as if your GP really is doing everything that makes sense, though I do wonder about a referral in relation to thyroid - though the test results you posted on TUK are rather inconclusive for someone who isn't being treated for a thyroid problem. Unfortunately referral to a specialist may not actually get you anywhere as even specialists have their limitations

[Jaylou82 in reply to Gambit62]

Thank you for your reply. Trying to get further test for my thyroid is like getting blood fro a stone. In 15 yrs my Gp has only ever test thyroid 3 times. I'm waiting for my 3rd test results to come back. Has the previous ones was contaminated. I'm certain my thyroid is playing a part in this, as my menstral cycles have suddenly stopped. Which she thinks can be normal for 35Yrs. I'm going to ask to be referred to a Endo to see if I can get some answers. Just feel I'm giving meds she never explains anything as I only have 10mins. And she doesn't want to find out the root of the problems.

[pvanderaa]

For stomach pain, have you tried going gluten and dairy free?

[Jaylou82 in reply to pvanderaa]

Thanks for reply. No I haven't the stomach pains have only started within the last 6 months. So was hoping they would have found a reason why. But still no joy of being tested for reasons. I will try, just don't want to miss out on food lol. Had I know it's in almost everything.

[pvanderaa in reply to Jaylou82]

I’ve been able to do it but it took about 2 years of detective work to sort it out.

Start a log book and record all your food, drink and meds and the time. Then record the time of the onset of symptoms. The symptom may not arise for 24 hours until the food gets to a particular portion of the gut (like the illium).

Also, restart the log with each B12 jab as symptoms (similar to the others ones) arise within 48 hours of the jab. These are “good” symptoms and need to get sorted out from the “bad” ones.

The logbook also helps with any short term memory loss as i found it hard to sometimes remember what I ate yesterday.

[SusanLMckinney]

If you are taking 1ml or 1CC (they are the same) every month of B12 by injection you should be fine on the pernicious anemia. You could still have low iron for other reasons though. The goiter is not a good thing and should be addressed. Your thyroid levels should be tested regularly. If your doctor is not taking care of this, get another doctor. Unless of course you live where you have socialized medicine and can't for some reason. Your back is another matter and not related to B12 or stomach issues or thyroid. The meds you take for Ulcers can contribute to low B12 but if you are taking shots that should take care of that. I too have suffered with B12 problems, no detectable levels by the time someone figured it out. Nearly died with subacute combined degeneration because of it. I hope you can get the help you need. I believe so many times women are dismissed when a man with the same symptoms is taken seriously. Not fair.

[Jaylou82 in reply to SusanLMckinney]

Thanks for your reply. I've suffered with the B12 for 15yrs. This came along the same time as the grotire. They said grotire was fine. I had a scan done. I was given B12 injections to have monthly. They checked a few times over the years for my B12 levels and they always stayed below 200. I had loaded injections on and off over the years when it dropped below 150. They never have a reason has to why the B12 def was happening. I was 21 at the time. Being young you don't pay much attention to it all. Then fast forward 10yrs and I start feeling unwell, they do bloods and say everything's ok. By grotire grew rapidly and my health got worse. I suffers 8 pregnancy loses and they kept saying everything was ok and it can happen. I went private to see why I wasn't able to carry a child has I had 2 childnre already and never had a problem. The Dr fonentest and prescribed me progesterone injections and said I wasn't releasing that hormone. I had my youngest. Then I stopped injections and started to feel crap again. I went deaf in both ears and they can't find a reason why. Then my stomach problems started, now within the last 2 weeks I'm now vit D def and being tested for that. Along with iron. Sorry for long reply. It just makes you feel like gingvio when your crying to your Dr and they tell you your depressed.

[Rarararara]

Do you possibly have gall stones? My doctor wrongly diagnosed me with stomach ulcers and I ended up being rushed to hospital with a bile duct blockage, it also caused back pain.

[Jaylou82 in reply to Rarararara]

I have thought this. Because I get terrible pains along with this in my rib cages. And I can't even eat, had it makes me feel so unwell. How did they find out it was gall stones with you ? What year do they carry out ? Also how long did you suffer with this before you got rushed to hospital ? Sorry for all the questions

[Rarararara in reply to Jaylou82]

I found out it was gallstones after I was rushed to the hospital by ambulance in a world of pain. They did an ultrasound and my bile duct was blocked. That was in 2005. I had been complaining to my doctor about the pain for nearly 3 years.

I would suggest you begin taking a digestive enzyme supplement whenever you eat and also consider taking a proteolytic enzyme such as serrapeptase in an empty stomach. It will help to break down gall stones if you have them and assist your body with metabolic functions like repair and to clean the blood. But of course do your own research first and consult your doctor or naturopath, doctors are pretty much oblivious about enzyme supplements though.

[SusanLMckinney in reply to Jaylou82]

Medications for gall bladder disease can cause b12 deficiency, which of course causes low iron because the blood does not mature. Make sure you are taking B12 shots or at least sublingual as it may be impossible for you to absorb it via the stomach. Make sure you are eating some kind of animal products (the only natural place you can get B12.)

[KimberinUS]

H pylori causes b12 and iron deficiencies. Also causes stomach issues and hypochloridia, low stomach acid, which causes all over malnutrition.

If you have never been treated for h pylori you can have a blood test done but the breath and stool sample tests are more accurate.

You cannot have taken any ppi (previcid, omprezole, ect) or bismuth (pepto bismal) for 2 weeks prior to testing.

I had it and at my worst. Prior to b12 injections, i wondered if i had dementia.

[Jaylou82 in reply to KimberinUS]

Hi yes they did do still sample and I had to stop one medication for 2 weeks before I could do this. The test come back negative. Then she started me on the other tablets. So left me back to square one. I'm just fed up of being giving medication and not a reason for the cause of the problems. Clearly they are all linking. But everytime I mention what is causing it she says it can happen.

[cc120]

Does GP/NHS offer B12 HYDOXOCOBALAMIN or B12 METHYLCOBALAMIN injections?

Also, though I'm sure you're aware of the site: b12d.org/overview

[Jaylou82 in reply to cc120]

Hi, My Gp prescribes them for me on NHS. Never had a problem with getting these from Gp. My Gp hands these out like leaflets. The ones I have currently are

Hydroxocobalamin 1mg in 1ml

Cyanocobalamkn 1000MCG in 1ml

I've never noticed that my chemist has given me difffernt ones. I thought B12 injection was a B12 injection and all would be the same. Why are they different ? Also why would they give me different ones ? Sorry for questions, your reply has just made me check.

[cc120 in reply to Jaylou82]

Hi Jaylour82. I think if the HYDOXOCOBALAMIN , it is best to try METHYLCOBALAMIN. Hopefully someone with better knowledge.

Also please see response on this from fbirder on the following post:

healthunlocked.com/pasoc/po....

Should find the info on b12d.org/index along with a plethora of B12 info.

[Jaylou82 in reply to cc120]

Hi thanks for your reply. I will certainly mention this to my Gp. Has a few months on my B12 blood test my results come back as my levels being 500. Which for me is very good. My levels haven't been that high for 10yrs. Even my Gp was shocked and confused to has why. Nothing changed in my diet or medication.

[cc120 in reply to Jaylou82]

Best of luck Jaylou82, best to be clued up as much as possible so that GP won't try confusing you with science ;-).