Not looking for a scientific discussion, just out of interest really - how bad have you suffered with B12 deficiency and what sort of symptoms did you experience?
I only ask as, I've been having investigations for some time now and B12 deficiency and pernicious anaemia were ruled out near the beginning.
All the while over the months, I just remembered how I'd felt quite boosted having had one from my Dr in September. I'd felt improved for 48 hours, only to crash badly the following week and felt even worse. He attributed that to starting thyroid meds at the same time. And my B12 levels weren't too low, so that was ruled out after having one injection from him.
However, having been on thyroid meds, inhalers, omeprazole and a host of other meds and supplements for my various symptoms I decided to take myself off to have a B12 injection.
Having discussed my symptoms with the nurse I saw, she suggested just having the loading doses anyway. I've since found a slight improvement in some of my symptoms, particularly my main issue - breathlessness. I'm finding that when I'm very still, it almost feels as if my whole body is 'buzzing'. This has been since I started the injections about 10 days ago (had my 5th today).
Whatever is causing my symptoms it's been quite debilitating and I'm now in my 4th month off work. So I've been prepared to try anything, even if the bloods/results don't suggest that's the problem.
How bad have other people's symptoms got with B12 deficiency, and what sort of symptoms have you had?
Thanks, DT
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DaveT81
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Others will respond re P.A. but I wonder if you may also have a problem with your thyroid gland, which would be hypothyrodism or autoimmune thyroid disease also called Hashimoto's.
To confirm or not I'd ask for a Full Thyroid Function Test which is TSH T4, T3, Free T4, Free T3 and thyroid antibodies. The test has to be at the very earliest, fasting (you can drink water). If your doctor wont do all of these ou can get private ones and for info log into Thyroiduk.org.uk another forum on Healthunlocked.
I was diagnosed with P.A.before I had any symptoms by a good doctor who told me my blood was 'strange and I told him my mother had P.A. and he immediately got me tested and diagnosed and I began B12 injections.
For hypothyroidism I had to diagnose myself after the GP (apparently not seeing a flag upon the blood test form about thyroid hormones) who had phoned me at home to reassured me that all of my tests were fine (23 or them) At that time I was ignorant of anything to do with the thyroid gland and was discharged from the A&E after an overnight stay - going straight their as I had to get assistance to get onto the 'plane'.
The discharge from A&E so they didn't check the thyroid hormones and stated 'probably viral with a high cholesterol. Lucky for me the person who helped at the airport mentioned 'thyroid' to me that I phoned surgery and asked for a form to be left out for me. Something I had never heard before and I got a phone call from another doctor who asked 'who gave you the blood test form and I said 'I did'. There were only about 4 days between the other doctor phoning me to tell me I had no problems but TSH was 99.5 and mine 3 days later was 100.
In the UK it is quite barbaric that the NHS makes us wait until the TSH reaches 10 whilst ignoring clinical symptoms (they know none these days in preference to a blood test). In other countries we're diagnosed if TSH goes above 3+.
Autoimmune problems are frequently overlooked, I believe and we're given other diagnoses/medicaions for things we may not have but the common ones are overlooked.
My TSH was 45 when tested and a blood test for another matter revealed that it was auto immune. Fast forward 8 years and after years of suffering from stomach problems, balance issues, headaches, loss of feeling in feet, fatigue, depression, to name but a few I was diagnosed with PA, but only after I specifically asked about it after discovering a family connection with the illness
It seems that doctors don't know any clinical symptoms for common ailments, in these 'modern times'.
If we, the patients, don't have internet access there's no way of trying to solve our health issues because we have rely on the 'experts' to at least know basic autoimmune conditions or vitamin/mineral deficiences.
I actually had a number of tests done, and quite a few thyroid panels. My Dr actually initially diagnosed me with Hashimoto's and gastritis. Although my levels weren't 'out of range', the Dr I saw believed that my symptoms were pretty much confirmation on their own and my TSH, T4, T3, Free T4, Free T3 and thyroid antibodies were all low/high enough (albeit within the recommended NHS range) to consider trying treatment. I should point out, this was a private GP, not NHS. No way would an NHS Dr go against guidelines and treat symptoms.
However, after having had a couple of months treatment of thyroxine, my levels shot up (TSH - 0.202, Free thyroxine - 24.10, Free T3 - 6.82, thyroglobulin antibody - 14.90 and thyroid pyroxidase antibodies - 9.12) and I just wasn't seeing a change in symptoms so it was back to the drawing board.
I believe that PA was also considered but, again, bloods appeared to contradict any attempts at diagnosing (Active B12 - 75.5 pmol/L, Folate - 6.95 ug/L and 25 OH Vitamin D - 64.4 nmol/L) this. Despite that, I was initially given a shot of B12 and prescription for vit D and folate, as the Dr wanted to see if he could simply just give me a boost at that time.
After 2 months I was feeling little difference. Having the B12 injection slightly improved me for a couple of days but then I crashed really hard.
So, at the moment, the Dr I'm paying to see is adamant my symptoms can/are attributed to several autoimmune disorders but he can't pin any one or two down, as I've not responded to any treatment.
Also, on my last visit we noticed that my 'Free testosterone' was very low so we're treating that with testosterone injections at the moment.
I mainly wanted to ask about B12 deficiency, as I feel a lot of my symptoms fall into line with this but my initial bloods just seemed to suggest I was somewhere in the middle so PA wasn't really considered. Having paid to have B12 injections recently, I've noticed some slight improvement.
I'm lucky that the private Dr I'm seeing is prepared to consider my symptoms of equal (if not more so) importance than any blood results, and sort of uses the bloods as a guide but 5 months on, I'm still no further to a genuine name to attach to what's been happening to me.
Did you have your blood tests for thyroid hormones at the very earliest possible? Fasting? and if you were given a trial of hormones did you allow a gap of 24 hours between last dose and test? if not your results could be skewed.
TSH is highest early a.m. and drops throughout the day.
When you state results, it is helpful if ranges are also stated. The reason being that different labs have different ranges.
However, there is also something called 'thyroid hormone resistance' and few Endo/doctors seem to know about this phenomonem.
And yes, all tests were fasting (I generally stop eating after 6:30pm most nights too) with my last dose at least a day prior.
I actually stopped the meds myself. I was on 25mg, then he increased to 50mg but after a couple of weeks on increased dose I started having strange side effects, shaking, tingling, etc. so we agreed that the thyroxine route wasn't the right one.
I would copy/paste your blood test results onto the Thyroiduk forum on HU, just for the reason that I know many are excellent with blood tests especially vitamins and minerals as I don't have the experience
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