Apologies as my story is a little long. I have hashimoto's thyroiditis. I gave up gluten, soy and milk, and along with levothyroxine my health has been great. However, in 2015 I was diagnosed with Vit D deficiency. After six months of treatment I recovered. Then after having a second baby in Aug 2016, I started having symptoms of b12 deficiency but all my serum tests were normal. They don't have the 'active b12' test were I live so my doctor decided to treat me as if I had b12 deficiency.
My symptoms were: Right after I had my baby (Aug. 2016), I started getting mild electric shock sensations between my legs. I had cramps in my legs and numb spots on my feet and legs. I had a c-section so I thought it was part of recovering from that. Then I had my yearly physical in January in it showed my TSH was high. After having the baby my medication has been put too low so I was hypo again. I started taking a higher dose in January. Then at the beginning of February I just started having constant pain all over. I went to my local doctor and she thought it was hormonal and told me to ride it out.
Then in March I started feeling worse so I went to an endocrinologist. They did a full thyroid panel and everything looked fine. It was recommended I see an internal medicine doctor. He's the one who thought it could be b12 deficiency. So after taking some oral supplements I was started on weekly injections for 4 weeks. My started up symptoms were rough, basically I left much worse - more electric shock sensations, joints popping, etc.
Then I began to feel better. Then after my forth injection I was pain free and feeling great!
However, this only last about 4 or 5 weeks then the pain came back. My doctor then recommended one shot everyday for 6 days, then weekly shots for 6 weeks. The week I was having a shot everyday, I began to feel better again (though not quite pain free). Once that was finished and I started with weekly shots it was more up and down. I began to notice a pattern. After each shot (Friday) I would feel a little worse but then by Wednesday I would feel better (but not pain free). After six weeks I was pain free but only for about 5 days. Then the pain came back and now I feel worse.
I was negative for intrinsic factor (although I've read false negative's happen 50% of the time). And as I stated before all my serum levels are normal. But I responded to the b12 therapy really well initially.
Can anyone help me? I feel like my doctor is close to giving up on me.
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shelmer18
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I'm so sorry you've had such a difficult time when you should be able to enjoy this happiest of times with your baby.
Pregnancy is known to make many demands on B12 and, if already low,(which sounds likely with neurological symptoms you've described) may have been further inactivated by anaesthetic or nitrous oxide used in gas and air.
I'm not a medic but, from my experience of having Hashimoto's and B12def. - injecting every other day since April this year, and recently every two or three days - the pattern you describe is very familiar and, once neurological symptoms occur, unfortunately it does take time and is a long and slow process before feeling longer periods free of fatigue and neurological symptoms. Any stress or overdoing seems to set things back - not easy to avoid I'd imagine with a baby to care for......
You may already know that BNF, BCSH Guidelines, UKNEQAS and BMJ latest research document, all recommend that neurological symptoms should be treated every other day 'until no further improvement.' Confirmation of the importance of early and adequate treatment is contained in Dutch research results in the pinned posts on the R/H side of the forum:
"Fortunately half of the patients have experienced a lot of improvement in their symptoms after a year of treatment but there are still a lot of patients with remaining symptoms, who could possibly have recovered if their treatment was started promptly and adequately".
..........
It's also really important that your thyroid is optimally treated and I, personally, only felt well when TSH was suppressed. Unfortunately GPs seem to have limited knowledge of both these diseases and we have all had to do our own research - difficult I remember to make time for with a new baby! The TUK forum, if you aren't already S member, is a very good source of information as well as the little book, 'Understanding Thyroid Disorders', written by Dr A. Toft, published in association with the BMA. Showing this extract helped persuade my GP not to reduce my own thyroid medication :
"Typical results would be a fT of 24 pmol/l or TT4 of 140 nmol/l, and a TSH of 0.2 mU/l. In some patients, a sense of well being is achieved only when fT4 or TT4 is raised, for example 30 pmol/l or 170 nmol/1 and TSH low or undetectable. In this circumstance, it is essential that the T3 level in the blood is unequivocally normal in order to avoid hyperthyroidism."
"Thyroid blood tests should not be interpreted in isolation and correct medical care will also depend on careful assessment of symptoms and clinical assessment".
................
Finally, researchers now believe leaky gut/intestinal disease/gastric atrophy is the source of autoimmune disease so you're on the right track by following a gluten free diet. 🤗 I believe this is at the bottom of all our own family autoimmune/Hashimoto's thyroid/B12 problems.
Thank you so much for your reply! It's good to know someone understand and has a similar experience with a positive end. I'll show this info to my doctors and ask for shots every other day. Do you mind if I ask how long it took you to recover having an injection every other day.
A difficult question to answer, because we're all so individual and there are so many other factors involved, not least being that I'm an oldie so your powers of recovery may, hopefully, be faster Shelmer......
This is the eighth month of SI and, although it does vary from day to day, overall fatigue, tingling toes, fingers, tinnitus, anxiety, mood and motivation have improved so much that I'm just beginning to feel less fragile physically and emotionally - walked for two hours last Sunday and am just breaking in new, lighter walking boots 🤗
All I can say from the benefit of hindsight, is that early treatment of B12 injections is vital for neurological symptoms but also important is ensuring other nutrients are optimal as these too may not be absorbed.
PS Sally Pacholok recommends B12 supplements as well as injections.
High folate can indicate B12 defiency as it's not being used up. As you were feeling better with daily injections but not with weekly injections, I would wonder if you need to continue the injections much more frequently, ie alternate days, or even daily.
I doubt your doctor would accept this but, if you felt you wanted to do alternate, or daily, injections, it would seem self-injecting would be the way to go, perhaps?
It's my understanding that you can't have too much B12 as it's water soluble and your kidneys (assuming they are functioning OK) will filter it and you just pee it out.
The other thing that occurs to me, that I've read on this forum, is 'Functional Vit B12 Defiency' and Gambit62 explains it very well in the first reply in this post - healthunlocked.com/pasoc/po...
It might be worth considering Functional B12 Def may be your issue, perhaps?
Hopefully, others, including @Gambit62, will be able to advise ....
it sounds like you are being undertreated and actually need injections ever 4-5 weeks.
It sounds as if the injections are working but your levels of B12 fall below the levels you actually need at 4-5 weeks.
Can't really explain why you find that you feel worn out for the couple of days after the shots but also true that this is reported by enough people to be unusual but not unique.
It might be that lower doses more frequently would work better for you but unfortunately this isn't a licensed treatment in the BNF (which doesn't rule out your GP trying it if open to it). It is also possible that using very high dose oral (1000mcg+) in between maintenance doses, might work for you if you can't get your GP to look into varying your regime.
Have you pointed your GP at the area of the PAS website that is aimed specifically at helping medical professionals improve the diagnosis and treatment of their patients.
Thanks for the replies! At the beginning I had one injection a week for 4 weeks. I was fine and pain free after the 4th injection. I then didn't get another injection for five weeks. But even after that injection the pain came back. About 4 weeks after that the pain hadn't gone away again so I ask my doctor and he thought maybe I didn't get enough initially so we then did one injection every day for six days. I began to feel better although not quite pain free but close. Then I had an injection once a week for 6 weeks. After about 5 weeks I was pain free again but for only 5 days. Then it came back. Do you know why I would have such an up and down? My doctor has agreed to an injection every other day until I am pain free. I hope this works. I started yesterday.
sorry - no explanations - metabolism of B12 is quite complex and very individualistic but it isn't unusual to need B12 much more frequently 'than it says on the packet'.
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