What is wrong with me

[Hayley31]

Hi...I'm desperate for answers at the moment, as I'm in a really bad way with some really confusing health problems. If anyone can help me to shed any light on all of this, I would be so grateful as I have no idea where to turn next for answers. I have been unwell on and off for years (the last year being the absolute worst!) and it is really ruining my life.

As a kid I was very healthy and never really had anything wrong with me apart from the occasional cold, tummy bug, ear infection and normal childhood illnesses that everyone gets. I did suffer from eczema from the ages of five to eleven which I outgrew.

When I was eleven I began to suffer from frequent migraines, which seemed to settle down by the time I started my periods. I also went through a phase where I was low in energy, would become breathless when climbing the stairs and found it difficult to concentrate. I remember taking iron tablets around that time, and someone mentioned that I should take B12 as I was vegetarian, so I did and I felt better.

Between the ages of twelve to seventeen I was healthy.

At seventeen I began to have frequent throat infections, ear infections, constantly catching every cold and flu bug going, I could be low in energy and had mild IBS. I put this down to the stress of college and working in a nursery, and catching things from the kids, but it did seem that my immune system was low as other people didn't seem to get ill as often as I did.

I seemed to get past this and for the next year and a half at eighteen and nineteen I was healthy.

Then at nineteen I had a virus which they think may have been glandular fever, I also had a chest infection with it, and my throat infections then became more frequent, then chronic, so I had my tonsils removed which sorted out that problem. I also had labyrinthitis around the same time, and was left slightly dizzy and fatigued for quite some time after that. All of this went on for around seven to nine months. It was mentioned to me that I was also slightly low in B12, so I took B12 tablets again and thought nothing of it, I seemed to get better. I didn't know about PA or problems with absorbtion at the time, so had no reason to think I had that.

For the next year and a half to two years at twenty and twenty one I was healthy.

Then in my early twenties I had really bad gyno pain, that went on for about four months with no real explanation. I had a lot of tests which were inconclusive, I took painkillers and anti-biotics and it seemed to go away by itself in the end. I also had a bad water infection around the same time. Not long after this I had a phase of getting stomach upsets and then migraines. I felt rubbish with all of this for about two months, then it all just seemed to settle down. Not sure if this is relevant but I also had a period of anxiety and OCD, which is something I suffered from all through my twenties.

For another two and a half years between the ages of twenty two to twenty four I was healthy.

At twenty four or twenty five I began to have neurological symptoms - dizziness, brain fog (which became quite severe), pins and needles down the one side of my face and I also had memory problems and could feel quite fatigued. I also became extremely depressed and my OCD and anxiety became really bad. I was referred to a neurologist and had a CT scan, two MRI scans (and they followed it up two years later to make sure), an EEG and an ECG as I occasionally had heart arythmias around that time. I had a lot of blood tests but nothing conclusive. In the end they put it down to either anxiety (I knew it wasn't), migraines (but it was there all the time) or chronic fatigue (do you get neuro symptoms with CFS?)

Between twenty five and twenty eight, I just got on with my life. As long as I looked after myself I was reasonably healthy, although I could feel a bit rubbish from time to time with things like bloating and yeast infections, but nothing major.

At twenty eight my stomach symptoms came back, I was having frequent bouts of diahorrea, stomach pain and bloating and, some of my symptoms are quite personal, but I began to get really bad soreness (where the skin would actually come away) of my back passage (sorry guys) almost like some kind of ulceration. I had a persistent water infection and my vagina became really sore and really dry. I could no longer have sex and my libido was non-existent.

All of this seemed to pre-cede me becoming tired and run down, dizzy, the brain fog from 2007 came back and I was now starting to have memory problems. People were starting to notice that I was pale and my lips would break out and become visibly sore.

At twenty nine, all of this continued, and got worse. I now had soreness of the tongue and lips, really bad speech difficulties, my skin was extremely uncomfortably dry, I continued to have water infections, my hair was falling out in the shower, and I now had a pins and needles like burning sensation in my hands and feet. I continued to have what felt like a water infection. I was tested for everything under the sun several times and was backwards and forwards to the GP constantly that year. They couldn't find anything wrong. I looked jaundiced.

Another development was when I began to get skin rashes and angioedema, which at first I thought was food allergies. I was referred to an immunologist who diagnosed me with idiopathic angioedema as the result of my body being really run down. I was then diagnosed with a B12 deficiency (my level was 154), a vitamin D deficiency and I was also told that I was low in iron and folate.

I had B12 loading doses, and took vitamin supplements for vitamin D, folic acid and iron and within two weeks I felt AMAZING!!! All of my symptoms disappeared. I was so relieved as I thought I had finally found the answer. At this point I was just about to turn thirty, so it felt like I'd been given a second chance at life after so much of my twenties being blighted by ill health!

I was given injections every 3 months after that, but found that they didn't last very long. I was taken off them as I didn't test positive for intrinsic factor anti-body and my levels were okay. Pretty soon I was back to square one. All of my symptoms were back and I couldn't get the GPs to let me go back on the injections. After doing a bit of research online I discovered how many other people were having similar problems. So I contacted the PA society and had a consultation with them. I learned to self inject. I was given methylcobalamin to begin with and self injected every other day until no further improvement. The methyl didn't do a lot for me, so in May 2012 I switched to hydroxy (which is what I'd had at the GP surgery) recommended to Goldpharma by other sufferers who also self inject. I did this every other day and within weeks I felt really healthy again.

2012 - 2015 I w as really healthy most of the time although I did have a couple of flare ups of my stomach related symptoms and the ulceration I mentioned before. This would go on for a few days to a few weeks, then settle back down again as though nothing ever happened. My stomach issues have never really been properly investigated, although I have had blood tests for Coeliac, Chron's and Colitis - all non conclusive.

Then in Feb 2015 I began to have symptoms which I think may have been low pottasium, I kept on going faint, I felt weak, my balance and co-ordination was not good, I had head pressure, neck pain, frequent urination and difficulty thinking clearly. Really scary stuff. I also had a water infection.

In March I stopped the B12 and just hoped I stopped needing it.

April - September 2015: I felt well

October: The tiredness and B12 related symptoms came back, so I gave myself loading doses. The GPs don't feel I need B12 so I knew I'd just have to do it myself. Again I had side effects like muscle weakness, dizziness, lack of co-ordination and head pressure. The GP's don't approve of me self injecting, it was something I started out of desperation and something that worked well for me for over three years. However it does scare me a LOT that I'm doing something against medical advice.

By December the side effects wore off.

December 2015 - May 2016: I felt healthy

May 2016: The tiredness came back as did the stomach symptoms and the ulcers. I self injected again, and if anything I felt worse. My whole body especially my lips. hands, feet and vagina felt like they were drying out. I also had neck pain and felt tired and lethargic. I can sometimes get a racing mind as well when I'm very lethargic or tired with it all. I suffered with this for the next couple of months.

June 2016: I built up my pottasium levels and gave myself a few more injections at the end, and they worked.

July - September 2016: I felt healthy

October - December 2016: The tiredness came back. I went back to self injecting, but found that when I did I was going dizzy and faint, having neck pain, head pressure and difficulty thinking clearly. I felt drunk and I actually did faint a couple of times. I was inconsistent with the B12 as I had no idea what I should be doing. The worst was I was now having shortness of breath, which was quite severe and pretty terrifying.

Jan 2017: Loading doses again

Jan - Apr: Healthy

Apr: Flare of of stomach symptoms and ulcers. Tiredness came back. Self injected again and it didn't do much.

May/Jun: Tried more B12 but now feel worse than ever. Has caused me a lot of problems at work, they are insisting I should see a haematologist or neurologist but all my GP does is blood tests, and doesn't think there is anything seriously wrong. I always come out feeling like a hypocondriac despite feeling at death's door. I have recently been told that my vitamin D is extremely low and that I'm also slightly low in folate, but my B12 is sky high and I should stop self injecting (to be honest, I am now terrified to touch B12 again as I've got in such a mess with it). They feel I should never have started self injecting in the first place.

Work are expecting me to have all the answers as it has affected me at work in terms of performance not time off (as I drag myself in no matter how I'm feeling most of the time) and I don't know what to tell them.

I wish there was a less long and complicated way of explaining all of this, but there doesn't seem to be. I am now thirty four and feel that I've had my life ruined and taken from me by this. I haven't had a proper career, it has affected me in terms of relationships, my long term relationship in my twenties didn't survive mainly because of the problems that all of this has caused me, and I find myself backing away from other potential relationships because of my health and how it affects me. I'm at the age where my biological clock is ticking and I wish that I had have just got on with having babies when I was younger, before my health got so complicated as I feel it would be dangerous or impossible to have them now with all of my health problems being as bad as they are. I'm now at the point of starting to accept I will probably never have them now and I would make a really good mum.

It's also causing me to want to leave my job as I'm under a lot of stress there as wel because of my health, but can't afford to do that, even though I'm really unhappy. I really just don't know what to do.

I've also become reclusive as due to the faint feelings etc I am reluctant to go too far from the house, and I often have to turn things down socially as I'm just too unwell, so a lot of the time feel I'm letting friends down. I just can't have a normal life because of all of this. I no longer drive because of it, and won't go abroad.

Any help or advice would be appreciated, so sorry this is so long.

[clivealive Forum Support]

Wow! Hayley31

Have you ever supplemented with folic acid or Vitamin D as deficiencies in both can be quite distressing.

I'm not a medically trained person but there are others on here who will be able to give you good advice

[mimimo in reply to clivealive]

my d levels are 50 folate 17.6

[Hayley31 in reply to clivealive]

I will try that.

[Marz]

Am wondering if you have had the correct thyroid tests carried out ? Many thyroid symptoms overlap with low B12 and could be the cause of some of your symptoms.

I struggled with my health until I was 59 when I was diagnosed with Hashimotos here in Crete back in 2005. I also have a B12 issue. You can click onto my name above and read my Profile - only takes a couple of minutes 😎

Do hope you soon feel better.

[Hayley31 in reply to Marz]

Thank you so much x

[Marz in reply to Hayley31]

So have you been tested for low thyroid ?

[Hayley31 in reply to Marz]

yes

[Hidden]

Low vitamin D isn't good. I take 4000 I.U. per day. Don't go crazy with the D vitamin because it is fat soluble and you can hurt yourself. 4,000 units is rated as a safe dose here in Canada. They have increased the level of vitamin D that is required for health. Low Folate will have a detrimental effect and you need to get the level up. It is very important with PA. You can take a supplement or you can up your intake of folate rich foods. There is lots of great information on the internet. I go the food route because follic acid is contraindicated for seniors. I take sublingual B12 but I have ordered an oil form from Australia. Will see how it works. Supposed to have an 80% absorption rate. We absorb about 2% from pill form B12 and 3-5% from sublingual supplements. Transdermal patches are touted to be better but there is no real scientific testing available. Their manufacturing standards seem pretty sketchy, too. One of the goals with B12 supplementation in refilling the reservoir stored in your liver and in your brain. If you test low, then your reservoirs are probably very depleted. The B12 in reserve would even out the flow of B12 in our systems at times when our diet is deficient. The liver has to process the B12 into the form needed by our bodiy, it does not happen instantly. The B12 shots put a large amount of B12 into our system all at once. The liver processes as much as it acn but a lot is lost, so if maintaining B12 level is a problem, it may take a long time to get the B12 reserves restored. The oils are supposed to absorb slowly enough that our liver has time to process and store the extra B12 and fill our reserve tanks.

My biggest concern is the type of B12 the oil contains. It is supposed to be the types best utilized by our liver but neither type is the one that this site recommends. The science seems sound and it has been very well researched and documented but I will have to try it to see if it can let me stop being a human pincushion. I have Ehlers-Danlos syndrome that makes my skin very fragile so the shots are an issue for me.

[Hayley31]

Thank you. I feel that when I do feel brave enough go back on injections, I will need to be consistent rather than on and off which is what I have been doing and this is where the problems seemed to start. My B12 levels are sky high, so I would have a really hard time convincing a GP that there is any problem with B12....I'm in a real mess, but thank you so much for your advice!

[namastay in reply to Hayley31]

Remember that even if you blood serum B12 is high it can still mean you are deficient in B12 as the body isn't properly absorbing it into the cell. Ever try a Sprectra Cell testing or the like which actually gives the cellular levels of vitamins, etc?

[Ryaan]

B12, Folate, Vit D and iron.

These are the deadly ones, only one of these if deficient can cause bad problems. It's much worse if u have a problem with all 4,

These 4 must be in range (high range if possible is best if you're deficient.

I don't think high B12 can do much damage as it's water based and your body gets rid of the excess. (sometimes your urine changed to greenish if in excess).

I think the problem is not the B12 itself but 'how' you've taken it).

And if you're iron and folate is not right then the body can't use the B12 as they all work together.

It's recommended to take folate daily (400ug) if you're SI. At the same time you have to ensure that your iron is in good range.

(But if you supplement with Iron then get medical advice as to how much). I think for a woman it's about 14mg. (Dong overdo it with Iron as if can be harmful).

Just get normal recommended dosage.

Vit D itself if los can have terrible effects so is must to maintain a good level.

Getting back to the B12.

I was very low and my GP gzvd me loading shots, 3 per week for 2 weeks), 6 in total.(Hydroxo).

I start feeling terrible after about 4 shots ! So much that I stopped at 4 shots. If was causing racing heart, palpitations, breathing problems, feeling faint.

If wasn't the type of B12 (Hydroxocobalamin), it was the number of shots in a short period.

Luckily when I told my gp he told ms not to have any more, it was too much too often/soon.

He told me to go off them and see how I feel. The symptoms(side effects) gradually went after 2-3 weeks.

Then I made another appointment with gp.(Now must have been about 5 weeks).

He told me to come in for 1 injection per week (same Hydroxo) to introduce it slowly rather than a sudden loading.

I took 1 per week and after 9-10 weeks I felt a huge difference. At the same time I was given Folate 400ug daily as I was low.

I think that's your problem !

As I said it's not what type of B12, it's how you used it, and every time you gave yourself loading doses, which is too much too soon, it doesn't suit everybody. Hydroxo is perfectly fine as I've researched it to be the best type.

I think this time get some professional advice as I'm not a medical doctor.(but talking from my experience.

You should have 1 injection (Hydroxo per week to introduce it slower and take 400ug Folic Acid daily. Also get your Iron and Vit D tested and make sure you're taking the required amounts(your gp will know from blood tests), as you said your Vit D is low which is bad on its own.

All these 4 mentioned above must be in balance.

B12, folate and Iron work together to carry oxygen around your body. (If any one of these is low then your body won't use B12 properly and you won't get enough.

Vitamin D has nothing to do with B12,Iron and Fooate but has bad symptoms if it's low, so make sure you take that also.

The B12 one injection per week you should take(I took 10-12 injections before noticing good changes then I cut down to 1 every 2 weeks for 2 months, then 1 per month.

Now sometimes I need it after 2 weeks, in week 3 and have 1 every 2 weeks as I can notice when I need one. (Stomach bloating, feeling too full with small meals, sometimes slight tingling comes back in 3 weeks) so body can tell and I just inject after 2 weeks.

I really think the way you used the B12 is the problem, and if you cut back to 1 per week, or even 1 in 2 weeks alongside the other 3 daily, you should nootice improvements in 2-3 months as I had similar problems.

Introducing slowly and 1 ml per week or 2 weeks as a trial isn't harmful, but loading doses of 6 injections in 2 weeks is not for everyone and can give you your symptoms.

I'm not a medical doctor but talking from a similar experience and the above helped me tremendously. (Give it a try)

Optimum levels (high end range) of B12, folate, Iron and D3.

Some people go way over with B12 but that's ok as long as they're going according to symptoms. As I said B12 is water based and excess your body gets rid of.

Instant excess is not good, gradual excess is fine.

I have to say this ;

Please get professional medical advice as I'm not a medical doctor.

I don't have to say this ;

I don't think medical doctors know much about B12 deficiency.

If there are some who do know, their hands are tied by NHS guidelines, or other guidelines.

Hope ithis helps.

I hope you return at some point and let us know how you're getting on.

Took me 1 and a half years to know what I told you above, and I knw how you feel.

I knw it will work (but will take a little time).

(Just remembered)....Get your Thyroid checked if you haven't to rule it out.(as symptoms overlap).

If it iOS the Thyroid then you have 2 separate issues.(which can be managed by Thyroid meds) and the second issue of B12 as I've explained above.

Use Hydroxocobalamin for injections (it's very good).

[Hayley31]

Thanks....I'm amazed your GP let you have one every week for 12 weeks, they normally say loading doses and one every 3 months if your lucky! I may try it weekly....I'm really worried about this burning hands and feet, it's much worse than what I had before I was diagnosed (and B12 made it disappear). Do you think it's because I need B12, or has B12 caused it, I've heard your hands and feet can burn if you have too many platelets or red blood cells....can vit D deficiency do that?

[fbirder in reply to Hayley31]

Ask to see a neurologist.

There are lots of possible reasons for nerve pain (my book lists 81). It's worth hpgetting some nerve conduction studies as well as electromyography readings. Some of some 81 oparent too bad, but some of them will really benefit from an early diagnosis.

[Ryaan in reply to Hayley31]

My gp was very good at listening and considering according to the symptoms and not results. (Weekly worked great), then you cut down according to symptoms.

I'll remind you it took about 12 injections (1 per week) before I cut down. A little bit of experimenting and keeping a diary of symptoms helps.

Unfortunately he retired soon after that and I have a gp now who doesn't listen to anything.

I don't know the cause of your burning hands and feet, I've personally never heard of B12 causing it. Maybe others more experienced on this site could help you on that.

I've also never heard of low Vit D to cause that but I know quite a few people who complain about burning feet, and are not deficient in anything.

Sorry I have limited knowledge on that, I'd say I'm still a beginner and learning from these posts everyday

You can always try B12 and if things get worse (hopefully not) you can always stop as they're water soluble,

I would try and do some research on google about burning hands and feet or try talking to your gp about it, and low Vit D symptoms you can research on google and talk to gp, but I doubt it's that but as I said at the moment I don't have that knowledge.

If you do use b12 injections and things don't improve or get worse, at least you can rule it out as the cause.

Best wishes.

I hope other people on here can help you better,

[Hayley31 in reply to Ryaan]

Thanks

[Hayley31]

I'm now worried that I've had too much pottasium/magnesium as I've been drinking a LOT of coconut water (to try and keep my pottasium levels up) and now I'm worried I've done myself some damage....I'm in a right mess with all of this.

[Hayley31]

I still feel really bad...I'm now convinced I have parathyroid disease, as my throat is REALLY sore, I also have bloating that won't go away, difficulty losing weight, burning hands and feet as well as tiredness, brain fog, dizziness and memory problems. My calcium levels are well within normal range but my vitamin D is normal. My GP doesn't think there is any need to test for parathyroid as my calcium levels are normal....but can you have parathyroid without high calcium levels? I'm so worried as I'm convinced this is what I've got.

[Hayley31]

Sorry I mean my vitamin D level is low....don't know why I put normal....it's deficient.

[crw2ddd]

We're you ever tested for Sjogrens? It causes dryness and neuropathy. I know this is an old thread but I wondered how things went with you?

[Hayley31]

It comes and goes, I also seem to have a Candida overgrowth. How do they test for Sjorgens?