I had blood done 26/02/18 which came back positive for antibodies at my first endocrinology appt at hospital that appt I left with a script to start levothyroxine I am still awaiting an ultrasound which my GP said was for biopsy in letter to GP. I'm on levo (for life) iron (3 months) folic acid (2 months) and cyanocobalamin (for two weeks) I will then get thyroid and B12 checked on the 12/04/18. Is my GP on right track or should I be asking for anything else x I'm off work at present wouldn't be much use right now tiredness, memory so off course I struggle. My latest blood results B12 was 169 (200-883) and intrinsic factor 13.2 (0.0-25.0) I have no appetite for best part of 6-8weeks. Can I ask how long you have waited for ultrasound for neck scan x
Cyanocobalamin for two weeks.. Does my GP know ... - Thyroid UK
Cyanocobalamin for two weeks.. Does my GP know what's going on with me or just winging it for now.
Should state in post that cyanocobalamin is in the form of tablets 50mg three daily for two weeks after b12 results were 194 then a week later 169 is my GP on right course or should I ask for something different as right now on a two week wait and see xxx
You need injections. 1000 mcg once per week for four weeks, then once per month indefinitely. Your doctor should do the injections but if it's too arduous, learn to do them yourself.
You were probably taking 50 mcg tablets. There are 5000 mcg methyl cobalamin tablets which may work better. Not too expensive. If you take one per day, your injured stomach ought to absorb enough if you are too squeamish about getting shots.
Your body is not a jar into which you put jelly beans and then close the lid. Folate is water soluble and not much is stored in the body. So two weeks is not appropriate. You need to take it every day for a long time unless your diet changes significantly and you get enough from food. You should take it as a B complex (don't buy super high dose ones. Compare what's available and buy an intermediate dose). Since B vitamins are water soluble, you will make expensive pee if you buy high dose. Your body will take what it needs and excrete the rest.
What about your Vitamin D and ferritin levels? Haemoglobin?
Low zinc levels cause inappetance. There's supplements with copper and zinc together. Not high dose.
Thank you for replying. I have had so many bloods done past couple of months I have no idea what's what I would need to ask for copies which I did yesterday the receptionist handed over in a sealed envelope only to get home and realise she only gave me the most recent B12-IF results. I have results written done from Feb /Mar Tsh 12.02, iron 17, Folate 2.8 I don't have ranges that's just what I've written down.
If it's the usual range, the folate is at the bottom. Iron? Ferritin? That's low too.
And your TSH is way over range.
Do you have Coeliac disease or some other problem with the digestive tract such that nutrients are not being absorbed? Are you taking any medication that reduces stomach acid?
Hi gabkad no I only take levothyroxine, ferrous sulphate and folic acid they gp prescribed cyanocobalamin for two weeks then I'll get tsh and b12 checked to see if any improvement. My scan today shows only enlarged thyroid which Dr did the meds should shrink easing the discomfort I feel at present.
I'd say he hasn't a clue. With under range B12 you should be getting injections and you should be tested for both intrinsic factor antibodies (not just one). Cyanocobalamin is the least absorbable form of B12 and the dose is way too low to do much. You also need to know WHY your levels are so low. Just supplementing for a few weeks/months isn't going to change the root cause unless you know it is poor diet which you have now changed radically. The referral is usually to gastroenterology to find out why you have poor absorption and whether there is internal bleeding (low iron).
There are Guidelines for treating Folate & B12 Deficiency that your GP should have read. I am on my phone and cannot access the link - will do so later. If you have neurological symptoms the injections should be every other day until symptoms subside.
The Intrinsic Factor test is known to be unreliable. So what are your symptoms ?
My symptoms include tiredness, no energy even after 10-12hours straight sleep, pins and needles, dry skin, lack of concentration, forgetful, cold, no appetite. Interesting you mention intrinsic factor test known to be unreliable. GP asked if I was vegetarian which I'm not I think she is going with diet but I did say my diet is good, if tiredness could be sorted and some sort of appetite would return I'd feel better. Thanks for your reply much appreciated.
Pins and needles can be construed as neurological in nature. Please scroll down in the link below to view the signs and symptoms ....
b12deficiency.info/signs-an...
b-s-h.org.uk/guidelines/gui...
It would be a good idea to download the second link to show your GP .
Your doctor is doing a whole lot more than many we hear about on this forum. She has prescribed Levothyroxine and is trying to do something about your vitamin/nutrient levels. I would giver her at least 7 out of 10 for her efforts so far.
What sort of iron supplements has she prescribed? Often the NHS prescribe Iron Sulphate, which are cheap but poorly absorbed and often irritate the stomach. Ferrous fumarate are much better, you can take 210mg up to 3 times a day if necessary. You can buy them over the counter at Superdrug. Eating liver once a week can help a lot too.
Do you take vitamin D? Many people become very low at this time of year. You can buy high dose vitamin D and take it once a week over the winter if you don't want to take so many supplements that you rattle when you run downstairs. One of the most cost effective places to buy supplements is Amazon.
Hi GP is good I'm just impatient, she prescribed me Ferrous sulphate 200 x 3 daily. I eat liver at least once a week even before this as I enjoy it, will have a wee look on amazon for supplements. Thank you for your reply
Gillyanna22
Please test Vit D before supplementing. This is important. Taking Vit D without knowing if needed, and what dose, means that you could possibly be overdosing and as D3 is fat soluble any excess cannot be excreted, it will be stored and lead to toxicity level.
You can do a home fingeprick blood spot test with City Assays vitamindtest.org.uk/
She would have to hundreds of thousands of units per day to get toxic. And even if she did (highly unlikely), vitamin D3 has a 60 day half life.
The bigshot vitamin D doctor gave a lecture about this and other things. What's his name..... Michael Holick. Some patient was taking 300,000 IU per day. No lasting adverse effects once it cleared out of his system.
Overwhelming odds are Gillyanna is low vitamin D. She's low in everything else, except TSH.
According to the Vit D Council
"If your level is greater than 150 ng/ml, this is considered too high and potentially toxic." which for us in the UK is 375nmol/L
vitamindcouncil.org/about-v...
And City Assays (NHS lab which does tests for the public) put on their results sheet
"Total Vit D levels above 220nmo/L are considered high and increase the risk of Vit D toxicity".
That's what you should have posted in the first place instead of making an open ended warning.
Given this poor woman is so ill she probably can barely get out of her home, overwhelming odds are she needs to take vitamin D3 in relatively large doses which, given that she seems to have some very serious absorption problems, won't even then get fully absorbed. She is not in good health at all.
I am putting my faith into gp at the moment I've never been ill as such in my life I have no family member have any issues with thyroid, B12 or such this is very new to me I appreciate all the information all members post here and I thank you I wil question my gp the first chance I get.
It was already suggested by another member in her previous thread to test Vit D. I was reiterating the importance of testing before supplementing. We have seen people say that take ridiculously high amounts without testing.
As members come back with their test results that's when further suggestions and explanations are given by members.
cyanocobalamin is usually prescribed by doctors as it is cheapest but not absorbed as well as methylcobalamin.
If you go to the Pernicious Anaemia forum here on HU, you will find quite a lot of discussion about the various forms of B12. Some people really don't do well on methylcobalamin. It isn't just a case of methylcobalamin being better absorbed.
Hello Gillyanna22,
cks.nice.org.uk/anaemia-b12...
According to these, you should have b12 injections first - regardless of whether (a) Neuropathy is present or (b) your B12 deficiency is 'diet related'.
"Treatment for B12 deficiency How should I treat a person with vitamin B12 deficiency anaemia? For people with neurological involvement: Seek urgent specialist advice from a haematologist. Ideally, management should be guided by a specialist, but if specialist advice is not immediately available, consider the following: Initially administer hydroxocobalamin 1 mg intramuscularly on alternate days until there is no further improvement, then administer hydroxocobalamin 1 mg intramuscularly every 2 months. For people with no neurological involvement: Initially administer hydroxocobalamin 1 mg intramuscularly on alternate days for 2 weeks. Maintenance dose (where the vitamin B12 deficiency is not thought to be diet related): administer hydroxocobalamin 1 mg intramuscularly every 3 months for life (standard dose). Note that the manufacturers' licence is for every 2–3 months. Maintenance dose (where vitamin B12 deficiency is thought to be diet related): advise people either to take oral cyanocobalamin tablets 50–150 micrograms daily between meals, or have a twice-yearly hydroxocobalamin 1 mg injection. The injection regimen may be preferred in the elderly (who are more likely to have malabsorption), and vegans (as currently available brands of oral cyanocobalamin may not be suitable for vegans)."
Reading the guidelines it is clear that the oral cyanocobalamin is (i) a MAINTENANCE dose AFTER the course of injections and recommended for people whose b12 deficiency has NO neurological involvement AND is diet related e.g. in vegans.
It's worthwhile knowing if you have any neurological symptoms. It'll strengthen your case..
b12deficiency.info/signs-an...
If you do, you must seek an urgent second opinion. Taking the folic acid could actually be counter-productive at this point.. and mask anaemia as folic acid will normalise macrocytic blood cells.. "Check vitamin B12 levels in all people before starting folic acid, as treatment can improve well-being such that it can mask underlying B12 deficiency and allow neurological disease to develop." Is the NICE quote.
It is now considered better to get on with b12 injections first before taking folic acid. The GP's excuse could be that you don't have anaemia. Taking folic acid masks anaemia (which will help back up their argument to do as little as possible, but won't help you.)
Go to the PA forum for more support - especially if you are symptomatic!
Thank you for your replies interesting reading on the links and information you provided very much appreciated.
Got a call for scan on neck due to a cancellation I'm going in morning will post an update letting you know how it goes.
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