Hi all
Thanks to everyone who helped with my antibodies question last week. I don't see my doctor for another week to find out about treatment (hashi/ hypo). However since Friday I've progressively experienced burning pain in both thumbs and the index and middle finger of left hand. Has anyone experienced this? Can anything relieve it? Sorry, I'm so new at all this and my GP's over the past year have seemed so lost!
Thanks everyone.
Have you had a B12 test? This could be B12 (or magnesium) deficiency
Thanks! Yes, B12 is on the low side but apparently still in a normal range. It is very painful 
Thank you so much. I'm just coming round to the "normal range" meaning very little!! X
Do a search on Gout, my mother has just been diagnosed with symptoms like yours
having but mainly in her feet, she also has thyroid and all the above going on, I even had her take B vitamin complex for a month - but tests came back as Gout.
Have a read and see what you think - patient.co.uk/health/gout
I am falling apart!
Hi Pennyrose,
I commented on your last question, and if I remember rightly you were on B12 injections but hadn't had one for a while (since Dec?), and also your folate was very low? This is likely to be what is causing the symptoms you describe.
When you see your doctor make sure you get your overdue B12 shot, and you might even need the loading dose again as you've gone so long. It's really important to understand that most people diagnosed with B12 deficiency (as you have been) need the shots at least every 3 months for life. Unfortunately it's not just a question of getting your serum B12 level up into the normal range - this test is meaningless once you've started treatment, your symptoms are what's important.
You also need the doc to prescribe 5mg folic acid to get your levels up, otherwise you won't make the best use of the B12 in the shot. Also, keeping yourself topped up in between injections with a B12 sublingual or spray is a good idea.
I know it's a lot to take in, especially when you're worried about your thyroid results as well, but it is important.
Take care, Hampster1
Thanks Hampster. I just spoke with my Gp. Earlier endo appointment is late July. I pushed about the B12 but she said its fine and that the pain is probably 'thyroid related'. I've now been sick for 54 weeks with little or no medical support. She has said I can go private to see an endo quicker. Just very fed up. I see lots of talk about Dr Skinner- is he worth the trip to Birmingham?
To say that your GP is next to useless would be the understatement of the year, I am literally enraged on your behalf. I don't know where you are based in the UK, but I believe one of the Admin team on this forum keeps a list of good Endo's that they can give to you in a private message. If you post another question asking for this info I think someone will jump in with the details. Your TSH/T4/thyroid antibodies clearly point towards Hashi's and the sooner you get away from this GP and see a good Endo the better.
As for your B12/ferritin/folate, enraged doesn't even cover how I feel about your lack of correct treatment. Are you in a position to see an alternative GP at the practice, or request a meeting with the practice manager?
When you were first diagnosed, did you get the full loading dose of 6 injections, or have you only ever had 1 injection? Do you know what your level was before you had any treatment? Were you ever tested for pernicious anaemia, i.e anti-parietal cell and anti-intrinsic factor antibodies?
Here are 2 articles from patient UK that you can print off and bring along to your GP practice:
patient.co.uk/doctor/Pernic...
- Note the section called "Management". This is how you should have been treated (but weren't).
- You should highlight the sentence "It should be remembered that serum B12 is not always an accurate reflection of deficiency at a cellular level. It is perhaps for this reason that some patients become symptomatic if the frequency of their injections is reduced, despite having normal serum B12 levels."
- There is also 2 important points made about folate and iron in this section.
- Your GP should also have attempted to establish a cause for the deficiency, in your case as a minimum antibody tests for anti-parietal cells and anti-intrinsic factor, also a Coeliac screen.
- The burning/numbness in your hands is most likely caused by a combination of your untreated B12 and folate deficiency, this is a neurological symptom and if left untreated could become irreversible - your GP's suggestion that this is "probably your thyroid" is extremely negligent.
patient.co.uk/doctor/Folate...
- I don't know what your lab range was, but according to this article your folate of 3.5 is deficient. It states that "Serum folate is a short-term indicator of folate status; levels are normally within the range of 5-16 ng/mL (11-36 nmol/L folic acid activity). Red cell levels are more stable and reflect long term intake, levels less than 140 ng/mL (317 nmol/L) indicate reduced body stores."
- Has your GP done a test for red cell folate levels?
And here are the BNF guidelines for B12 treatment:
evidence.nhs.uk/formulary/b....
Do you have anyone that can go to the doctors with you? I live in Sussex, if you are anywhere near me I would be happy to help. Sadly, you may have to get your Endo to sort all this out for you, so please make sure you get a good one. I'm so sorry for the long post, still fuming...
Hampster
Never apologise, you have been absolutely amazing, and extremely helpful/supportive. I moved practice last year as the last GP was very bad (didn't believe I'd lost weight, spotted that meds they provided probably did "more harm than good" etc). The new practice(s) have been better but they knew in September about the thyroid but didn't understand what it meant. Frustrating!!
When first informed about low b12 it was around 120-150 and was given 6 injections within 2 weeks. I had a blood test in December and another shot during the test then. It had increased to around 480 before that injection but has been decreasing since. I tested negative for intrinsic factor.
My CRP has been high consistently this past year which the lab results has highlighted could mask how low my iron and folate could really be (I got a print out of these results and the lab put these notes on). Maybe the CRP is due to inflammation in my thyroid.
I've just posted about an endo in York, thank you so so much for all your help and advice. I have a very nice husband who has been so supportive this past year even though I've been a nightmare! I really want to get somewhere now, it's taken too long, cost too much stress and energy. Thank you so much again Hampster x
Whoops! Bit of an outburst. In my defence, I went for 7 YEARS without any injections, because my GP stopped treatment as soon as my serum B12 level went back to "normal". It was actually only about 340 which is not normal in anyones book who knows anything about this disorder! Unfortunately at the time I was as ignorant as my GP and trusted her diagnosis. I have a different GP now who is still fairly useless on this subject.
The only reason I get my injections now is because I developed Graves Disease and started researching B12 as it was listed as a linked condition. I had further testing done by my private Endo after the GP dismissed all my symptoms as due to my thyroid. Sound familiar?
Anyway, it looks like your current GP has followed the correct protocol initially with the loading dose, but is now trying to use the serum B12 test to dictate your ongoing treatment. This approach is not written down anywhere in any of the guidelines I have seen, and believe you me I've read every book on this subject (actually, there are only 2 (!) Could It Be B12? and Pernicious Anaemia: The Forgotton Disease). The absolute minimum is 3 monthly injections for life (and most people need more than this).
This will probably fall on deaf ears at your GP's surgery, although you could try as the BNF is very clear.
Sadly your best bet is probably to get an Endo who will also be willing to help you with your malabsorption issues of B12/folate/ferritin. Most people with B12 deficiency need to keep their serum B12 levels way up over a thousand, and folate and ferritin ideally about 75% of the way up the lab range. Vitamin D as well.
I'll stop now! Good luck with everything and take care,
Hampster x
Hi Penny, One of my doctors said that those with hypothyroidism are second to diabetes for neuropathies. He prescribed gabapentin but I have found the supplement Gaba to be effective as well. In my case it was more my toes than fingers but it was icy hot pain.
Is this thyroid related?
Is this thyroid related?
Pins and needles in fingers
Burning pain in ankles and legs 
New pain in hands/fingers
