I am hypothyroid, on Armour Thyroid but still dog tired all the time. I’m on HRT and I have horrible peripheral neuropathy in my feet and lower legs. I can’t walk well or for long at all. My gait feels really off. I’m stiff and have no muscular strength in my legs anymore so crouching down is impossible because I can’t get back up.
I’ve been heavily supplementing B12 for years since a friend was diagnosed with PA and I realised how similar our symptoms were. So it looks like I have good blood B12 levels. However I’m not convinced because I have never felt better on it. Things have just got worse. I have decided that I will SI B12 and see if it helps me. I have litter faith in doctors and keep away as much as possible.
I have all my supplies now and yesterday I had an initial 2mg dose given at a sports clinic in case of any reaction to the medication. Tomorrow I start SI.
How did you all feel in the early days? About 2.5 hours after yesterday’s dose I could happily have gone to bed. I was so tired. Could not stop yawning and nodding off. I felt more awake again later. My feet didn’t hurt as much.
Today I am very tired and right now, late afternoon, I’m yawning like crazy and nodding off to sleep again. My feet hurt more and feel more swollen.
Is this normal? I thought it might give me some energy. Should I do daily injections to start?
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FancyPants54
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I have hypothyroidism. I had little reaction to hydroxocobalamin 1ml injections until 6th and last loading injection when felt a little more energy for a short while. I started s.i. and the first 2 x 1ml injection ED i went to bed and slept. It rarely affects me now. I stress we are all individuals and can react differently.
1ml is the usual dose, 2ml as a starting dose strikes me as high, no wonder you felt sleepy and tired.
Increased pain is usually a sign that healing is starting. Many of us felt worse before we felt better. I felt much worse after a short while
As for injection frequency that is an individual choice. Do some research on p.a./b12 deficiency and symptoms. From the sound of it you have neurological symptoms and NICE advise loading dose of 1ml on alternative days for 2 weeks (ie 6 doses), then EOD until there is no further improvement. Some, like myself, need to inject more, some less.
I had determined to do EOD myself. I will carry on with the initial plan and will just have to suck up feeling worse. Everything I do to try to recover makes me feel worse!
Must just say that doses are reckoned in mg. I mg of B12 can come in 1ml or 2ml of saline . Panpharma is a 1mg x1ml ampoule Hevert is 1mg x2ml ampoule . Both give the same strength dosage of B12 .
I've just done my first injection. I'm feeling proud. I was all fingers and thumbs. A syringe is a lot different to a dosing pen. I lost a few drops. But I did it and now it should be easier. (Sub cut).
It depends how deficient you are & how much healing your body needs to do. It’s very common to get ‘reversing out’ symptoms, ie you may feel a lot worse before you feel better. Or you may just feel more tired than usual. If you have neurological symptoms that would suggest you are very deficient.
Keep some notes of symptoms so you can notice progress. Make sure you have good folate levels & lots of potassium or you can get symptoms from low levels of these. It’s quite common for potassium to fall when you start injecting & that can make you feel very weak & achy etc.
Everyone is different but I can remember feeling very tired, sleeping better & my mood improving quite quickly when starting loading doses but I had to have them for several months before I got any energy back.
I’m glad you’ve finally decided to inject & really hope this is the final piece of the jigsaw for you. 🙏🏾
Thank you. I guess I needed to know if others felt really tired at first. I'm pushing myself to do a bit of dusting and cleaning and I mean a "bit". I need a break. I need something to actually help me rather than making things worse because I have mum living here now and she does not understand the words "I have very little energy mum". She only understands what she wants me to do for her. At least I got her shower done this morning. Fortunately she's happy with 1 a week. But she also wanted her mattress turning and her winter duvet back on the bed and the washing doing...
I have cleaners for mum's little barn home. But I'm too embarrassed to let them in my house. It's not really recovered from the devastation created by the renovation and extension of her barn. Still loads of stuff I don't know what to do with because we haven't got around to buying a shed yet. And the heating broke in dining room last winter so it's damp and cold. We just had low level background heating in there and the open fire and it was beautiful and snug. But right now it's not and I need to organise and replace the heating and then get rid of the junk and try to reclaim the space for use. And I can't because I'm so weary all the time.
Sorry. I'm good at moaning. I still can't believe this happened to me. I was always on the go. I cleaned for friends after building work just to help out. Needless to say, that favour has never been returned.
Get those cleaners to help you! I’m sure they won’t judge-they will have seen much worse & be pleased to get the extra work! My Mum was the same -used to tidy for the cleaner lol! You need every bit of energy you can get for your recovery. X
\\o// Best Wishes for a regular and gradual progress in ache and pains- My wife suffer with these symptoms and doing house work slowly is helping her. 😊👍
Besides having symptoms getting worse at first & new symptoms coming for a bit (not too long, so do not worry), sleepiness changed in this very distinct way -
Before finding my deficiency I was tired but it was always a very wired type of tired.
In the beginning of supplementation (shots) I felt a beautiful, peaceful exhaustion.
Both tired but huge difference.
My son got more sick fom Hydroxycobalamine B12 injections. Long story short: Google MTHFR mutation and Hydroxycobalamine. Histamine is also a thing. When you got allergies, hayfever, such things. My son stopped after eod because he felt something was not right. He was and is still exhausted. No energy. Very sick. I wish you all the best.
Because we didn't know better! And we don't know anything yet. It's a very complex puzzle. Listen to your own body, that's all i can say. You know if something doesn't feel good. I am sorry, but you better know such things, it is important. They often speak about B12 injections as the holy grale. For most people it is, and for some people not. The only thing we knew before the injections was no Centrafarm, because of Benzylalcohol. I have to find out everything myself. Spend hours online.
I'm interested in what you say about centrafarm and benzylalcohol - could you tell me more please?
Is your son making any improvement? Did he have MTHFR or other methylation-related polymorphisms tested? Combinations of SNPs can affect our health, and the type of B12 or B9 used can make a significant difference for good or bad. An active form of folate made a big difference for me as well as active forms of B12.
With the vast majority of MTHFR mutations, the difference in required folate intake is so small thats its easily corrected by either slightly improving dietary intake or taking a moderately dosed supplement. Any folate form will do, whichever you feel best with.
Testing MTHFR is not necessary since a serum folate taste is sufficient to determine if there is a low folate issue.
If your folate is consistently low and you cant bring it up with diet, it makes sense to supplement. Many here take 400mcg a day. In certain cases, more may be needed but that depends on the absorption issues. MTHFR generally plays a very minor role in contrast to impaired absorption.
Firstly, supplementing b12 in the form of drops or tablets is not a good way for many to increase actual b12 levels. If you like everyone with PA and others with gut issues we cannot absorb b12 via the gut. Although you may show high b12 levels this is just a false positive. Injections is the only way to be sure that you are getting b12.
You also need to take other supplements (do you own research and read thousands of posts about this here).
It can take a minimum of two years to see progress if you have had years or decades of deficiency. This is minimum amount of time for nerve fibres to start to renew and heal.
I had the most and I mean the most horrendous 2.5 years healing. It was a mental and psychological attack which I think was not possible. But boy how much better have I got.
But I also completely changed my diet, research nutrition. Which led to me going completely organic and super healthy. I also avoided anything from pharmaceutical companies or what is advised by the government.
Why not lamb? Sheep can't be farmed intensively, they die if you try.
We already do all the organic foods. Have done for years. The meat comes from various farms around the country. The raw milk from Hook & Sons, the veg and fruit from Riverford. Even fermented butter from a local supplier. I don't have much worry over what we eat in this house. We do have a more varied diet than you though, and that I think is a good thing. For us at least.
My grandmother was a small mixed farm with a small herd of dairy cows amongst other things. I liked nothing better than to take a clean mug over to the dairy as uncle was finishing up milking and dip it straight into the chilling churns for the best milk drink ever. I am so glad we found Hook & Sons quite a few years ago now. Raw milk is delicious.
We were also used to the cycle of animal raising. I'd see the newborn calves and later the males were raised as beef. They had 2-3 years on the farm and then went to market. I'd go with Nan and we'd see if the local butcher opposite mum and dad's house bought any of her cattle and if he did he'd let the family know when it was ready and we'd go and buy our Sunday roast beef, reared on the family farm. It's good to understand the cycle and how farming works in a smaller, kinder farm. She was not organic. There was no such thing then. But the animals were only given medication if they actually got sick and the feed was only supplemented with minerals. They grew feed for the winter. Coming from that background it was obvious I'd be going the organic direct from the grower/farmer route when it became possible.
Have you heard of Crowd Farming? That's an amazing scheme. I have a large box of amazing mangos here at the moment. They came last week. Direct from the Spanish farmer. And when my husband posted photos of his mango chutney (2 boxes came at once) the grower (who had been tagged) asked for the recipe.
We love crowd farming. It gives the farmers so much more control and funds. But this year the weather has been weird so we had all our oranges in a very quick succession and didn't manage to eat them all. However, it's the best fruit, whatever it is. Nothing like supermarket fruit.
It's worth it. The oranges are to die for. The mangos are amazing. My mum lives with us now. She had never tasted mango and she's blown away. Waiting for me to take over more. We have also had papaya (not good, wouldn't go to that grower again) and avocados. It was a struggle to eat the avocados. But they were delicious.
I am SI. I don't have a specialist of any kind. Because of supplementation with tablets and drops my blood levels look OK. This is an experiment to see if I have any improvement with B12 injections.
They don't. They are readily available in sports clinics, beauty clinics, some pharmacies. I had my first one under supervision just in case on Saturday at a sports clinic.
I have been supplementing B12 with tablets and drops and oil for years so I have good levels in the blood. But I also have a lot of deficiency symptoms that my doctors are happy to ignore. I have looked into B12 injections for peripheral neuropathy and am happy to experiment. God knows the NHS has abandoned me with my unresolved hypothyroidism and my permanent atrial fibrillation. They don't want to know and don't really have the knowledge either where thyroid is concerned.
The notes that come with the B12 ampules usually mention that you could experience low potassium symptoms during the loading doses. I think I remember that this is because The B12 promotes the production of new blood cells which uses up some potassium.
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