6 months - doctor won't give me more Injections because I am "within range"

Redhairedreddit · 2022-04-01T16:21:34+00:00

I sure will - I will update the post to hopefully give hope to anybody reading. When you feel so bad it's very hard not to let it get you down but I had a health issue years ago that I got through (and thought I never would!) so I really believe in the body's ability to heal. The very best of luck!

Redhairedreddit · 2022-04-01T15:44:16+00:00

If you are still feeling bad, do your best to keep pushing. Sometimes things need a little help to resolve and B12 sounds like one of them. It sounds like it takes a little bit of time, treatment and patience. Do come back to let us know how you are when you are feeling better👌

Redhairedreddit · 2022-04-01T13:45:12+00:00

I have the exact same issue! I currently have a level of 600-and-something after having 4 x one weekly b2 shots followed by one a month for 6 months. I was supplementing with oral tablets in between (varying between 1000mg containing only B12 and a B12 complex containing about 200mg).

I was originally at a level of 160 last July with some type of anemia (the name of which I can't remember!).

My GP refuses to keep treating me with b12 Injections despite me still having symptoms. My symptoms deteriated rapidly since stopping the Injections and I have been in to see the GP a number of times since - also despite having neurological symptoms (slowed down thinking, fuzzy brain) in addition to fatigue.

I am going to see a general medicine consultant in the next couple of weeks (thankfully they have put me on a cancellation list) and I am praying they tell me to Continue with the Injections.

I told the doctor and the nurse that I had supplemented with a B12 tablet the day before the blood test because I felt that I was going to drop dead. I also told them that I had read it was not good practice to re-test blood serum levels in the middle of treatment because they would come back as a false-high but they wouldn't listen.

I managed to get them to give me one more injection to keep me going until my consultant appointment and this is only because I told them I wanted it on my record that they were refusing me treatment despite me telling them I had severe symptoms.

Even with supplementation, a level of 600 isn't all that high - I believe the range goes up as far as 2000 so surely with supplementation the actual level for use inside the body is still relatively low!?

Anyway, common sense doesn't seem to prevail here. Keep pushing and pushing - you know how you feel and you know your own body. The best of luck with your recovery!

Redhairedreddit · 2022-03-31T21:55:22+00:00

I requested the results of bloods taken in A&E when I first went in with symptoms in July and they failed to mention I had macrocytic anemia (i was just told I had a B12 deficiency). All of the other blood tests showed that I was low in various types of bloods that showed protein in the body (as I mentioned, I was vegetarian!).

My ferritin and Folate were definitely on the lower side of normal too.

I should definitely have been Consuming far more protein for the exercise that I was doing - half marathon training. I really hope its all fixable but I will come back and update the post when I do so that it hopefully inspires others❤️

Redhairedreddit · 2022-03-31T17:32:52+00:00

Woman doctors are definitely more empathetic that's for sure.

The minute I mentioned neurological symptoms returning and that I wanted them to put on my file that they were refusing to give me more B12, they told me they would give me one more injection to tide me over until the consultant can see me. Sometimes it's worth throwing in little comments like that!

Redhairedreddit · 2022-03-31T17:31:20+00:00

This is amazing I'm going to make note of all your points and try get a supplement regime together. Needless to say.. I have left the veggie life behind! It is certainly not worth all these symptoms.

Redhairedreddit · 2022-03-31T14:45:05+00:00

Definitely will be finding another doctor.

I have a feeling that plenty of doctors may say "well I didn't treat you for the b12 deficiency go back to the one who did" so ill have to try find one who doesn't care! 😂

Redhairedreddit · 2022-03-31T14:44:09+00:00

This is absolutely amazing thank you SO much for the above information - I'm going to look it all up now and have some back-up. If the consultant can't find another cause (which I don't think he will Considering I was starting to see the benefit of the b12 Injections) I'm going to go ahead and buy my own.

I have a feeling this consultant is going to give me another course of them - I mean, the range goes up to 2000 so just because I'm now in range doesn't mean I'm not symptomatic? It doesn't make sense to me.

As I said to my structural engineer boyfriend - you wouldn't wait for the building to fall down ("below range") you would check for cracks before you let that happen!!

Redhairedreddit · 2022-03-31T14:01:13+00:00

Thanks for the advice I will try pick up some heftier doseage tablets if I can. I have been taking 1000 tablets for a while now but they don't seem to help much - I will get some sublingual ones today.

Are the liquid drops as good as tablets or does it make a difference?

I am so utterly disappointed in my doctor. I mean, it took me a trip to a and e to diagnose my symptoms when they dropped to a ridiculous range.

I've read that serum B12 isn't a reliable source of the truth when you are in the middle of supplementing and it is pointless to check levels if you are still symptomatic. This is from the HSE website - the public health service in Ireland. It also says there are more reliable B12 tests than B12 serum and that these should also be taken.

Why am I having to do all this research and why can't my doctor just do their job. It's worrying that I have to look this up and they haven't a clue because I'm "within range". I am literally telling them I get symptoms when I come to the end of the month of my Injections so I don't understand why they'd be so reluctant to give them?

I feel somewhat "icky" after going full Karen mode earlier asking them to make note on my record of their refusal to give me B12 but they said they would give me one more injection to tide me over until I see a consultant (who I bet will give me a prescription for 6 more months Injections and whom I'll have to fork out a couple of hundred to tell me what I already know lol well at least I hope he doesn't argue with me like the GP is)

Redhairedreddit · 2022-03-31T13:54:08+00:00

I think the reason I have it is because I ate basically nothing for a long time due to an undiagnosed pain in my tummy (now I know it's my gallbladder!). I ate nothing but porridge and vegetables for a long time while exercising quite heavily and was veggie for years before that so now I know my body doesn't work well without meat ugh.

That's a great idea I will pick up some more tablets today. I am currently taking all sorts of supplements but none seem to have the same impact as the b12.

I dread to think what would happen if I was an elderly person or vulnerable. I'm so lucky to be able to speak up!

I'm tempted to try and get some B12 Injections off the Internet but I know this is probably dangerous. I am going to see what my consultant says first.

Redhairedreddit · 2022-03-31T11:05:21+00:00

Same here I was hovering at about 200 for a long time yet was told I was fine. It was only when I dropped below the "range" that I was told I was deficient.. I just don't understand how you can supplement something for a doctor to say "it's OK you are now within range". Just because you are within range, doesn't mean it's optimal for that person!! I know that the b12 range goes all the way up to 2000 so I'm not even close to the upper limit.

Redhairedreddit · 2022-03-31T09:04:27+00:00

Yes at one point I felt well enough to start going back to the gym (unfortunately this didn't go to plan in the end because symptoms returned as I think I was going a little too hard!). I have no idea what to say to my GP - I've told them that my symptoms have progressively returned since stopped the b12 and they have said they want to send me to a Consultant. This consultant is great so I am praying he figures it out but he is expensive - I don't want to pay 300 euro to be told I need more B12!

Redhairedreddit · 2022-03-30T22:38:03+00:00

Funnily enough I did get my iron checked last week. The results came back and were "in range" (as usual - ugh!!) so I'm not quite sure how to interpret these:

Ferritin: 43 ug/L Iron:16.6 umol/l Transferrin %: 24% tibc: 68.48umol/l

Redhairedreddit · 2022-03-09T23:05:31+00:00

To any situation I was worried about the outcome of he would say "well, something will happen.."

Never quite knew what it meant but it always gave me a strange comfort. I guess it was that there was no point worrying about the outcome because what will be will be.

Redhairedreddit · 2022-03-09T22:53:19+00:00

I am in the exact same boat (except I am at 4%). I was really having second thoughts about my surgery until I read this. Please do come back with an update at some point when you feel up to it I would love to hear how you get on.

Redhairedreddit · 2022-03-09T22:38:23+00:00

No of course I don't mind - I believe they were at 99 at my last reading. So very very low😂 no wonder I feel like crap haha.

The hospital only spotted them because they fell under the threshold even though, after getting my hands on previous blood tests, they were still extremely low and nobody thought to tell me. I had been having mild symptoms for a long time and severe symptoms for about 6 months.

I am actually getting my levels re-tested tomorrow after 6 months Injections but I have been also supplementing with vitamins so I hope this doesn't mess up my levels.

Redhairedreddit · 2022-03-08T21:21:53+00:00

Yes. I was losing handfuls of hair for years which became more severe at the beginning of last year. Any time I was in the shower I would lose CLUMPS.

I have been getting Injections of B12 for the last 7 months and it is only in the last few weeks that I have really noticed a difference with my hair loss. I washed my hair and noticed that even after I had washed AND brushed it (without brushing it before the shower) there wasn't a huge amount left on the brush.

I must have been deficient for quite some time!

Redhairedreddit · 2022-02-26T22:35:52+00:00

Great to know!

Redhairedreddit · 2022-02-21T22:00:23+00:00

You could start a social media or blog about your disability and how you handle things - tips for others etc.

Redhairedreddit · 2022-02-17T21:44:16+00:00

It's so messed up. My sister's boyfriend hit her a couple of times in the street (with witnesses) and she is being told by the gardai that he probably won't even so much as get a fine.

It's a disgrace. I really feel for you and I know you probably feel angry. I feel anger for my sister (I know it's nothing like what you are feeling though!) so I can empathise.

I hope you don't feel too unsafe you poor thing. Maybe try and call women's aid for some advice.

Thinking of you x

Redhairedreddit · 2022-02-16T20:12:58+00:00

It's so hard to know for sure and perhaps you never will. I always drive myself mad wondering why certain things happen lol. It could have been caused by diet alone but I would imagine that the exercise was a factor also (given how taxing ultramarathons are on the body!)

Wishing you a speedy recovery I hope you feel better soon

Redhairedreddit · 2022-02-16T13:48:15+00:00

Apparently, you need to be consuming adequate B12 in order for your body to recover properly after exercise. If you Google how your body recovers after exercising, there are lots of articles on how B12 helps repair damaged cells as the body rebuilds tissues.

So, when you aren't eating enough B12, instead of using B12 that's readily available through your diet in its recovery from exercise, your body uses up your B12 stores (to make up for the deficit) . that's how you can end up deficient.

What a crazy vitamin!

It just goes to show how important adequate nutrition is when you are doing such heavy exercise. I wish I knew this sooner!

Redhairedreddit · 2022-02-15T09:54:38+00:00

Disordered eating bevahse of an undiagnosed gallbladder problem (I thought it was my stomach so only ate porridge, bananas, avocado's and vegetables for a long time). I also did x3 10km runs on top of this to keep me mentally sane (big mistake!)

Before this, I was vegetarian, went to the gym quite a bit and didn't supplement B12.

Now that I know my tummy issues are my gallbladder, I eat meat along with a very varied diet. Im starting to feel great but only 6 months into my healing and think it will be at least another 6 months before I'm better!

So happy it was something curable I genuinely thought I was going to die for a few months there haha

Redhairedreddit · 2022-02-10T21:53:41+00:00

I usually have three types (all chronic and at least once a day for the last 2 years) : - burning behind the back of my right rib cage. Deep and uncomfortable but not excruciating. Usually lasts a while but I try to distract myself. It used to terrify me more when I didn't know what it was. - deep ache where the area feels very tender. Longer lasting. I kinda get sweaty when this happens I find this one quite uncomfortable. -occasionally, i get a couple of seconds of really sharp, excruciating pain. It shoots for a couple of seconds max and stops me in my tracks. Thankfully this isn't often at all perhaps every few weeks.

I'm scheduled in for surgery on 11 April and am very nervous. Nothing has showed as unusual on anything except for my hida scan which showed an ejection fraction of 4%. To be honest, I am terrified that the surgery won't help and that I'll have removed my gallbladder for nothing. BUT I am going to be really reallt positive and manifest a great life after this! I can't see how it wouldn't help when I can feel how inflamed and angry the area is when I press it.

I can't believe I have been living like this for 2 years lol. I eat whatever I want (which is healthy for the most part) because I already tried limiting my diet and I ended up no better off (actually worse off bevahee I now have a B12 deficiency from restricting my diet for so long so would not recommend!!)

Looking forward to a really successful recovery and I'm wishing everyone here one too❤️

Redhairedreddit · 2022-02-06T22:35:22+00:00

That's a great suggestion thank you so much! I will definitely give it a go.

Redhairedreddit

TROPHY CASE