Self injecting B12 do we have to inje... - Pernicious Anaemi...

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Self injecting B12 do we have to inject more if under stress!

Katherine1234
Katherine1234

The reason i write this post is I have just started self injecting and the charity doctor who is helping me out said to inject once a day for 2 weeks then once a week for 8 weeks. First 10 days I felt good and was getting some energy back (still have neurological symptoms). Day 11 did far too much (I was bed and chair bound before) and came down not well again for the last 4 daily injections, fatigue really bad. Gone onto once a week and by the third day my left side body weakness is back, legs paining, no energy, and pins and needles over the left side of my head back. Do I need to inject more if under stress? It appears I can go no longer than 1 or 2 days before symptoms are coming back :0(

34 Replies
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It can take a long time for significant improvements to show. And you may have to accept that you’ll never be back to the way you were.

I would stick with the suggested routine but switch to twice a week if that’s what is necessary to keep the symptoms at bay. Then you should see a slow improvement. But you must remember that you have a fairly serious illness and that you’ll have to take things a bit easier.

Thank you for reply fbirder I just felt well enough to be able to put some more effort into my businesses for 10 days (I have not worked since last August) and been ill for 10 years with enlarged blood cells. I have pooling B12, shows high but not getting into cells. I inject one day, can last the day after then all my symptoms are coming back :0( even this terrible brain fog and earring buzzing...the doctor did want me on cortisol too as it is 127 in the morning, but I don't want to take this...my thyroid tsh has now gone down to 1.41 since he told me to up my levothyroxine to a 100 mcg, my doctor had me on 50 mcg for 18 years...when I looked at old blood test print outs I was so under medicated with a diagnosis on ME/CFS. Looking through old blood test my blood cells had been enlarged for 18 years too, but my B12 always showed in the 400 to 600's.

How do you know it’s not getting into cells? Have you had MMA or hCys tested?

Katherine123
Katherine123 in reply to fbirder

My doctor won't do either fbirder. Charity doctor said I had a functional B12 deficiency, though my B12's show very high it's not getting into the cells...

fbirder
fbirder in reply to Katherine123

Without testing MMA/hCys levels the charity doctor is just guessing.

Katherine123
Katherine123 in reply to fbirder

I did ask him if I need to get them checked fbirder he said in his experience (he is quite a B12 expert) you will be spending a lot of money, he reckoned that it would all right itself after being on B12. Perhaps I should get them checked....A weird thing is fbirder I have been diagnosed with non alcoholic fatty liver and 3 gallstones! I don't even drink, never really have done, I don't like the taste, I eat very clean organic, and have done the past 15 years, I am the right weight for my height, a little under really but apparently I now have liver and gallstone problems :0(

Marz
Marz in reply to Katherine123

Gallstones and liver issues can also be linked to lowered metabolism caused by being Hypo 😊

Katherine123
Katherine123 in reply to Marz

Oh gosh Marz and my metabolism is so low!!! my body temperature low, blood pressure 80/56, my limbs fall asleep after just sitting for half an hour, my hair falls out, I have lost 2/3 of it, diffused, even my nails stopped growing and are very thin and wavy on the edges with vertical ridges, funny my toe nails have horizontal ridges. When I stand up I get so dizzy and rapid palpitations, my blood pressure drops even further. B12 charity doctor is asking me to keep checking this as he thinks it is down to my morning cortisol being so low (it s worse in the mornings). When I get out of bed I feel like a dead woman walking for about 3 hours. My appetite which I totally lost and could not taste any food is slightly back. Nausea is gone thankfully, I still bloat terribly after eating and I have now been gluten free for 8 weeks, sadly it has not stopped the bloating or stomach pains after eating :0( And my breathlessness is a lot better since starting to self inject B12. My latest TSH results are now 1.41 after going from 50 mcg levo to 75 and now to a 100 mcg. My doctor over the years was telling me my thyroid was normal on 50mcg levothyroxine, when I ask for all my blood test print outs for the last 15 years my tsh has always been 3.4 to 4.9! had high cholesterol even though I eat well, and now it is coming down since upping the levothyroxine. Sorry Marz I wrote you a book :0/

Marz
Marz in reply to Katherine123

I have been on Thyroid UK for almost seven years ? Once taking Levo the TSH is of little importance. You need to know the FT4 & FT3 results. Do you have Hashimotos ?

Happy to help 😊

Katherine123
Katherine123 in reply to Marz

I do not know Marz my tests from doctor had come back normal. She does not test for T3 or T4. She sent me to rhuematogy for the heavy painful legs?? the consultant did test tpo's <34 T4 19.7 pmol/L T3 4.5 pmol/L tsh 0.63 mU/L this was September last year 2017 I was feeling very unwell. I had upped the levo to 75 mcg myself and had been on that for about 2 months, do you know what these test results mean Marz?

Marz
Marz in reply to Katherine123

Without ranges it is difficult to say - as labs do vary up and down the country. I live in Crete so different again. Your FT4 looks reasonable but would need to know the range for the FT3 - it could be low in range - which could indicate you are not converting well. T4 or the Levo you are taking is a storage hormone and must convert into the ACTIVE thyroid hormone T3 - needed in EVERY cell of the body.

Testing the Folate - Ferritin - VitD also important when Hypo. Private testing is available through Thyroid UK with Medichecks and Blue Horizon - and today Medichecks have Special Offers ...

Please remember that 'normal' is an opinion and not a result. You can obtain copies of all your results - they are legally yours. Start a file and make a note of everything you are taking at the time of the tests - also mention how you are feeling. It becomes a journal that enables you to monitor your OWN health and check what has been missed :-) - yes it does happen !

healthunlocked.com/thyroiduk

thyroiduk.org

Katherine123
Katherine123 in reply to Marz

No ranges on here Marz :0( only for tsh. Latest iron panel I asked for a full iron test last time and this is latest iron test, serum ferritin 145 ug/L percentage iron saturation 40% saturation of iron binding capacity 48 umol/L serum iron levels 19 uol/L normally my ferritin is higher than that which someone said could indicate inflammation. My IgA's are also high over range.

Marz
Marz in reply to Katherine123

OK so I see you are posting on TUK - so will read your posts/replies when I have time and learn more :-)

Katherine123
Katherine123 in reply to Marz

Thank you darling enjoy sunny Crete :0) xX

Hi Katherine 1234 , sounds like you have neurological symptoms , the NICE guidelines say inject every other day until no futher improvement , you also need to take folic acid daily to help utilise the b12 , other co factors can help such as magnesium , vit b6 , and eating a banana day as bananas contain potassium . . It also helps to keep your ferritin level at least 80 so you’ll need to have level checked and if low prescribed ferrous fumerate .a lot to take in , but it’s great your SI now so good start , you can get folic acid in the chemist and like b12 you can’t overdose on it so at least 2 a day , or order 5 mg folic on line as that’s the best when on very frequent injections . Hope you feel better soon . Take care

Thank you for your reply Annnon58 I think I am going to have to inject every other day, I don't think I would make a week :0( I take Jarrows B-rights which have folate in them. I don't do well on folic acid. Ferritin is right at top of range 150 and I have never supplemented iron. I take magnesium and a ton of other vits, and make sure I eat potassium stuff every day. I might try upping my folate darling... xX

Good for you , I think you’ve made the right decision , glad you’ve finally got the correct dose of levothyroxine , shocking you where undermedicated for so long . All the best .

Xx

I just remembered if you have tinnitus you could ask your GP to refer you to an audiologist , my OH suffered with tinitus ; a symptom of PA , and he was given hearing aids as nerve damage affected his hearing , they also told him to have background noise to distract buzzing , you can google you tube background sounds for tinnitus . I also think there is a tinitus health unlocked group . frequent injections should help eventually .

I was sent to Annnon58 and had to have different earphones on and press buttons every time I heard a sound (those sounds were sneaky). I saw the consultant and he said amazing hearing. I mentioned the tinnitus and I had been taking sublingual B12 and it had lessoned a bit. He said you have that for life B12 won't cure it!!!

Hopefully they are wrong as I’ve read on this forum and others that tinitus eventually goes with correct b12 treatment .

I hope so too darling...

pitney
pitney in reply to Katherine123

Hi Katherine123 does not work for everyone but I found that a few walnuts everyday helped to calm down my tinnitus before I went onto B12.

It is one of the symptoms that has improved over the last 6 years of injections but I still get it everyday just some days worse than others

Hope you improve soon

All the best wishes

Katherine123
Katherine123 in reply to pitney

Pitney thank you I will try that xX

Hi Katherine!

I haven't time to write much now as I'm away showing cattle at the moment...

I can do this because I SI every day and take a broad spectrum multivitamin and mineral supplement (which includes a full vitamin B complex) plus extra folate, potassium, magnesium and iron.

3 years ago, before doing all this, I could barely walk or talk. I am self employed and everything for me depends on being well enough to work.

Please read through people's previous replies on this subject, including those from Gambit64, Polaris, and Wedgwood. You can find them by doing a search in "related posts" or going to their profile by double clicking on their name and then looking at "replies".

If you'd like more information from me, please ask again in a few days time when I'm back!

Awww! denise good luck with the cattle showing and thank you for your reply. I so know the well enough to work, no sick pay for us :0( I am going to Sl every other day and see how I do. I take all those extra vits darling accept iron as mine is showing top of the range and ferritin has normally always showed over range. I asked for a full iron test last time and this is latest iron test, serum ferritin 145 ug/L percentage iron saturation 40% saturation of iron binding capacity 48 umol/L serum iron levels 19 uol/L when you get a chance darling could let me know if this iron test is ok? xX

Hi Katherine!

I think I replied yesterday but can't see it so I'll try again!!

I'm afraid I don't know much about iron tests. By trial and error I know that if I get low I struggle to breathe OK and need heme iron from my diet and supplements to sort it!

Good luck with every other day SI - I hope it helps you.

I use 1.5mg in 1ml every day and I know people who use twice this (like 3 NHS jabs a day) so some people need more than others to function, all with lots of extras.

Maybe I am going to be an every day :0( also my tinnitus has got worse! I was hoping it would get less :0(

Have you posted your latest thyroid results on Thyroid UK Forum here on HU. It is possible you have low T3 ...

Katherine1234
Katherine1234 in reply to Marz

I have not done yet Marz my doctor won't test for T3 :0(

Marz
Marz in reply to Katherine1234

... and yet it is the most important of all the thyroid tests. This is because it is the most ACTIVE thyroid hormone and needed in every cell of the body. Without NHS testing revealing the root cause of so much illness - they keep Big Pharma going by treating so many other conditions .,.. :-(

Katherine123
Katherine123 in reply to Marz

I so agree with you Marz... I am just doing a adrenal saliva test profile this month. I will get a private thyroid blood next month and get them all done and keep you posted Marz. xX

Marz
Marz in reply to Katherine123

Wishing you well 😊

Katherine123
Katherine123 in reply to Marz

You too honey xX

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