Good afternoon all, Following previous good advice from this forum and in response to my querying crackly feel/legs (pins and needles) I requested a B12 Blood Test from my GP and now have the results -
I am currently on 75mg of Levo - four weeks after the increase with an appointment booked for checking 24/10 - so was very surprised when he had added a Thyroid test - which I was not prepared for - ( the appointment was 12noon and I had had my Levo first thing and eaten and had
Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule)
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate methyl folate supplement and continue separate B12
With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a B12 supplement as well as a B Complex (to balance all the B vitamins) initially for first 2-4 months.
once your serum B12 is over 500 (or Active B12 level has reached 70), stop the B12 and just carry on with the B Complex.
The likelihood of vitamin B12 deficiency can be defined according to the serum vitamin B12 level as follows: 258 picomols/L (>350 picograms/mL) indicates that deficiency is unlikely.[1][2]
From BMA best practice.
All your results are in the possible deficiency range.
You have hypothyroidism which is a risk factor for b12 deficiency and you have symptoms consistent with b12 deficiency: notably pins and needles.
You can check your symptoms at B12d.org which will give you a diagnosis.
If this leads you to suspect b12 deficiency then you should seek medical help sooner rather than later as symptoms may not be reversible if left untreated.
Thank you so much Carnwaller - this is very helpful and I have just looked at the B12d.org website and will study in more detail asap. I am just going out to get a B12 supplement to get started asap - as my Dr has said everything is 'Within Normal Limits' and disregards my symptoms - I was hoping for a low reading so that I could have some B12 injections - but I think I will have to recharge my B12 myself - as I am desperate to feel better and get back to my normal busy life. Do you have experience of health improvement with B12 please.
I don't have anything helpful to say but would be very interested to be kept in the loop and hear if you manage to get anywhere with this symptom. I have the same problem and have had since I started taking Levo. Mine spreads all over my body at times, but is mainly worst in my legs and left side. Functional B12 deficiency has been suggested to me by someone else who had a similar problem - I don't know or understand why that would start with taking levo. I haven't been able to ask my GP to test for anything other than Serum B12 so far, you may have more luck so maybe worth pursuing.
PS - You say that your symptoms have started since starting Levo - for me I had the P&N symptoms way before I was put on Levo so feel that it might be more to do with the B12 deficiency as suggested by TUK.
Thank you turquoisea7 for getting in touch - looking at our history it seems that there are many health issues that we have both had to deal with. Like you I am newly on the Hypothyroid Journey, starting Levo in May 22 - and trying to become as informed as possible. It has become clear to me over the past year that I have had to become my own advocate - and feeling as ill as I have done, that has not been at all easy - but I am learning that this might be the only way to be able to move forward, and I do need a plan in order to keep my head above water ! There has been a lot of one step forward and two back but finally I am hopeful, and with the help of TUK, that I am moving in the right direction. It has, and still is a battle with the medics but I am learning to put my case and to be more assertive in the consultations.
As my latest BT's for B12 have been listed as 'Within Normal Limits' I will get no further help there from my GP, so I have today bought some B12 to get started on and hopefully this might start to alleviate the pins and needles in my feet, legs and my fizzy head, let alone all the other symptoms ? Since my raise in Levo to 75mg four weeks ago - I am just beginning to feel a lifting of the terrible fatigue - which is the first sign that I have had of any improvements. It is clearly a long slow process - which is very frustrating - especially as I do feel that I have had a thyroid problem for probably more than half my life - but whenever tested have been told 'WNL' and sent on my way again.
However I can only move forward and have to be grateful that I am at last on Levo and to do as much as I can for myself in the process.
Where are you at this point on the journey and have you started any suppliments as yet.
Hallo, so regards the P&N, prior to Levo, I had them in the bottom of my left leg, but that was it, aside from once or twice in both legs - which at the time, I thought was sciatica, it may or may not have been. The P&N started around 5 years ago, when my blood ferritin came back as only 4, so I have been completely unsure if this is related; my ferritin is still only 34 (waiting for new test as I write) and I'm struggling to budge it.
When I started levo, literally after a week, the P&N became twitches, jerks, and then all-over P&N, jitters, twitching, - like when your eyelid twitches but not visible and pretty much all over. I still have the same problem. It increases and decreases in volume, is worse when I exercise and afterwards, and when I am tired. I have found some people describing is as 'fasciculations' which is the word I used to my GP. 3 GP's have never heard of it, alone or in relation to levo or thyroid.
I have found other resources, one a USA thyroid page, which says this is a common hypo symptom. It would make sense if so, as I perceive my hypo really started 5 years ago having been rumbling for the previous 10. Greygoose has said, common hypo symptom, will settle when you reach right dose. I am on 100mcg and hitting the limits of the GP's ranges, actually off the ends, and not even on a bodyweight dose. So no idea how I can get there or if that will help.
I have read resources explaining the problem as nerve damage due to autoimmune hypo (demyelination), it is meant to improve (actually mainly with T3 replacement) once problem is treated, which is essentially what GreyGoose was saying.
I have been in touch with another couple of people here on this same problem - I don't know how to 'tag' them or include their names - but here is the thread of our conversation: healthunlocked.com/thyroidu...
You will see jade _s is the one saying her problems were sorted with B12 injections. I am tempted to try this next if mine do not improve, as her blood B12 looked fine but her tissue B12 clearly wasn't. I am wondering about this question too for myself.
Supplements, yes I have followed all advice here and done everything I can: Magnesium, Potassium, B complex, B12, folate etc. My blood B12 shows way above range but in light of jade_s's points as I say, may be worth looking at injections.
I very much feel for you having the same problem, I am fighting shy of talking about it too much to GP at present as I want to do everything I can prior to getting referred to neurologist and told it's something I don't want to face on top of the hypo.
Very much hope your B12 helps. Do keep in touch and let me know if anything helps you.
Just found this from the other post, may be worth looking at: testing for the autoimmune antibodies which prevent B12 from being absorbed - but just look at the symptoms on the test: onlinedoctor.superdrug.com/...
sound familiar? (she says, with numb right hand) ?
Also: there is a Restless Legs forum on healthunlocked, people describe the same smyptoms as 'vibrating' and on this thread, there is a quote from the moderator: 'Levothyroxine can probably make RLS worse, but there is no safe substitute': healthunlocked.com/rlsuk/po...
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