Hi I have had hypothyroidism for nearly 20 years and during my annual thyroid check at GP I explained I was feeling more tired than normal and the nurse said you would ask for b12, iron and folate levels to be checked as well as Thyroid. When I rung for results a week later I was told that my B12 was low and to improve my diet accordingly and come back in 6 months. Approaching the 6 months retest I felt really ill with fatigue, light headed, brain fox so booked appointment with doctors where I explained my symptoms and was advised he thought it was a virus. I explained about the previous test result and he said my B12 wasn't low and to come back in 6 months for my annual blood test. I then decided to start supplementing with B12 and iron myself but only seen a small improvement.
I then requested another blood test and explained I have been supplementing and have now had the results. My first test back in May my B12 was 188(150-990) and the recent test was 330(150-990). As this above the NHS levels for treatment can I request a trial of b12 injections because of symptoms? Any advice appreciated as really struggling at the moment.
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List any symptoms that you may have and as many results as possible.
As for your thyroid results, if you post them all here with their reference ranges, we can comment. Iron results also.
If you don't have all your results, ring your surgery and ask the receptionist to arrange for you to pick up a print out and say you will pick them up in a day or two. Don't accept hand written or verbal results, always get a print out it's our legal right to have our results here in the UK.
OK thanks for advice, will try and get my results from my medical practice and post on here, would you suggest starting a different thread or just adding to this one?
You can do either. If you start a new thread then link back to this one or repeat all the information you've given above.
Don't start any supplements, including Orovite, for the moment.
Taking B vitamins that include folate/folic acid/B12 will mask signs of B12 deficiency and skew results. Your B12 of 188(150-990) was low enough to warrant testing for B12 deficiency and pernicious anaemia. Many people with a result in the 300s have been found to need B12 injections. Doctors should go by symptoms of B12 deficiency not numbers. If you put that result on the PA forum you will get advice.
A bit worrying that the GP I seen in November when I feeling so rough should state my previous B12 result of 188 was not low and to come back in 6 months🤔
The trouble is that GPs now seem to be unable to diagnose anything unless a blood test tells them there is a problem and a result has to be out of range to alert them to a problem, even then we often hear that a GP has said "But it's only just out of range" as though it doesn't matter.
Also, they tend to know little to nothing about nutrition and nutrient levels so anywhere within range is fine by them but look at the difference between bottom and top of range for B12, there is no way someone will feel the same with a level of 150 as they would with a level of 900.
I am lucky at my surgery, just have to call them and by the time I have arrived at surgury they are waiting to be picked up. Last time she printed them of and bought them to me whilst I was waiting for my appointment. Learnt to keep copies of all my results.
Before supplementing with B12 did your GP ensure that you do not have Pernicious Anaemia (or stop at present if you've already begun to supplement with it)?
Your result was very low but I would definitely request doctor to give you a test for Pernicious Anaemia as this is another autoimmune condition. He has to test the intrinsic factor. I have P.A as well as hypo. There can be serious consequences if we're undiagnosed.
Sometimes if we have one, we can develop other autoimmune conditions so it is imperative that they exclude P.A before you supplement.
No test for P. A. was mentioned just told to eat B12 rich foods which I did anyway. When I went back last month with symptoms was told by GP that my B12 of 188 wasn't low and it was probably a virus and to come back in 6 months for my annual check up. Started supplements as I was struggling to get the the normal day in work, symptoms slightly improved but did not go away so requested another full Thyroid test with B12, iron etc and the B12 had gone up to 330 which as I am taking high dose sublingualy sounds right. Will try and get both of this years blood test results in writing.
The GP followed procedure. The problem with undiagnosed P.A. is that there can be stomach changes and if we supplement B12 isn't absorbed into our system. (I must also state I'm not medically qualified):-
"Health conditions such as inflammatory bowel disease (IBD), certain medications, genetic mutations, age and dietary restrictions can all contribute to an increased need for B12.
Vitamin B12 deficiency can lead to serious complications such as nerve damage, anemia and fatigue, which is why those at risk should add a high-quality B12 supplement to their diet (2Trusted Source).
While people who consume adequate amounts of B12-rich foods and are able to properly absorb and utilize this nutrient don’t necessarily need to supplement, taking extra B12 has been linked to some health benefits."
I, personally, would insist on a test to exclude P.A. (my mother died through the GP stopping her B12 (as her results were fine) but she died due to developing stomach cancer due to B12 injections being withdrawn).
If it's within the range most GP's wont' do anything. If supplements are needed then buy them yourself. I do this because I can't be bothered to bang my head against a brick wall any more. They'll happily dish out anti depressants and cholesterol tablets but woe be tide us wanting vitamins.
I was put on Metformin, which drastically depletes B12. I was impossibly fatigued all the time, told the doctor it may be anemia and or B12. Just ignored me, told me results were fine blah blah.. Instead got given antidepressants. They nearly killed me and ruined my life. So yeah trust and doctors a big no no. This was before the advancement of the net or when patients were given the actual results. To this day I hope that doctor suffers a miserable end. Sadly he scored the jackpot when GP salaries doubled and he milked the practise. But no I'm not bitter, really.
Yes my trust in Gp's is not great as you never get the same one twice so no rapport built with them. I remember one telling me I wasn't suffering from stress when my brother was lying in a coma for 2 months.
If you can’t absorb B12 through your stomach then the best way to increase your levels is through injections. Supplements don’t help everyone, and tests will then only actually show what is in your system, not what is usable in the cells ie what is active. I’d suggest you read ‘Could it be B12? ‘Or books by the pernicious anaemia society. There is a you tube video by Sally pacholok, the author of the book too. After years of thyroid problems I developed a serious deficiency and was getting more ill every day. Perseverance with injections, in my case, every other day has transformed my health. But I continue to need them frequently unlike some others. I really suggest you carry out as much research on the subject as you can and be your own advocate, as not all doctors have sufficient knowledge of the damage the deficiency can do. If you can, think about joining the Pernicious anaemia society too as you can speak with them and get advice if needed. Best wishes to you.
You’re b12 deficient below 200 you should be started on injections straight away while looking for the cause it’s in bcsh guidelines. If you don’t absorb from food then you won’t absorb from tablets. They should’ve done the antibody tests for pa. The serum test isn’t reliable but in your case you’re far too low. You need to take folic along with injections, iron if ferritin low. My level was ignored at 197 & got lot worse it was higher when treated down to multi vits but that’s active & inactive so not all useable by the body & going to cells. Have you been tested for coeliac? That’s my cause. There’s many causes. X
The unfortunate thing about our Doctors, is they say you are normal when you are within the range. B12 shots hit the system fast, but again rules and regulations by the medical profession, stop us from feeling optimal. You were horribly low before you started your B12. The best B12 to take, as I have been there, and have helped quite a few people over the years regarding B12 if they wont give you the shots find the tablet B12 but take the one with Methylcobalamin. 1000mcg. Good luck.
I am using a sublingual methylcobalamin 3000mcg daily at the moment which seems to help a bit and probably the reason my B12 readings went up from 188 to 330.
Im was unbelieveably tired but my B12 was ok however my Vit D was very low despite sunny holidays and a hot summer so supplemented. What are your results for Vit D?
That is low, perhaps you could try some Better You Vit D mouth spray 3000...it was the only thing that worked for me because of absorption issues, and by the time they bothered to check mine, [despite my begging] it was 4. Co factors for vitamin D are vitamin K2 Mk7 and magnesium so it's important to take these too.
Low Vit D can cause changes in the gut that make absorption of B vitamins difficult. I had deficiencies in all the B's and this too can lead to gut malabsorption...a vicious circle. Dr Stasha Gominack has good info on this. I take a methyl B complex, and a couple of individual ones...it took me a while to get them balanced, but I'm so glad I did the research and finally got some answers and relief from symptoms.
It's good that your B12 levels have increased on sublingual, I take Jarrows 5000 sublingual, but I'm still thinking I may self inject if needs be...for now I'm ok. Remember GP's don't test for ACTIVE B12, [the B12 that's actually getting into cells] just as they rarely check the ACTIVE hormone T3, so it's often better to do our own blood checks, so we know exactly where the problem lies.
My B12 was actually higher than yours, but because my folate had been below range for decades and I was never told, the B12 deficiency had become serious, and I developed terrible tremors and couldn't walk unaided. I thought I had Parkinson's or MS...my GP of 20 years said it was 'stress' and tried yet again to prescribe anti depressants, and other nefarious drugs.
Some GP's and 'specialists' [I saw many] are not just useless, they are downright dangerous, and although great advances have been made in medicine, when it comes to understanding thyroid and nutrients and how the body actually works, they are seriously lacking. They are trained to prescribe pharmaceuticals and often they do more harm than good when it's not what we need.
Since I obtained my medical notes a few years ago, I was incredulous to read the rubbish that had been written about me...what an eye opener that was...and all written by someone I actually believed was trying to help. I always saw the same GP for that reason, but looking back, I may have fared better seeing a different one each time...one of them MAY have been knowledgeable, although that seems not to have happened in your case...
Thank goodness for this forum and other sites that help us to take control of our own health...I for one would be lost without it, or possibly not here at all😕
Yes just had some K2 supplements delivered to go with my vit D oral spray so will start on them today. Hopefully will get my print outs for my last 2 blood tests tomorrow from my GP and start on the road to get tested for P. A.
That's brilliant! Don't forget the magnesium though...it can make a tremendous difference. I take Mg citrate powder [great if you suffer from constipation, although that's mostly resolved since I buy my own T3] and Mg glycinate, but find one that suits your personal needs. SeasideSusie has a great link somewhere... I hope you feel better soon.
If you use magnesium citrate then it's best to get the powder (Natural Calm Original is good) and start low and build up gradually, you will know when the dose is right as too much will cause diarrhoea.
Or there is topical magnesium - gel and cream (I think).
Or Epsom salts baths.
If taking an oral magnesium supplement, it should be taken 4 hours away from thyroid medication.
Vit D and K2 are both fat soluble and they can compete with each other for fat to be absorbed. So it depends on what form of supplement you have. If either of them are tablets or capsules, they need to be taken at separate times of the day, and with some fat to aid absorption, cheese, full fat yogurt, toast with butter, fattiest meal of the day, etc.
If both are oil based softgels then personally I do take them together but still with some dietary fat.
There are also oil based liquid supplements for both D3 and K2 so again, those could be taken together.
Magnesium can be calming and if that is the case it's best taken in the evening otherwise you may get a bit sleepy in the daytime. I take magnesium citrate powder before bed but I also take a magnesium taurate capsule for heart health and I take that after my evening meal.
OK, so the oral spray will be absorbed through the mucous membranes in the oral cavity so you can take that at any time. Take the K2 capsules with some kind of dietary fat.
I then decided to start supplementing with B12 and iron myself but only seen a small improvement.
Do you have any results for iron or ferritin (iron stores)? It isn't a good idea to supplement iron without having adequate testing to be sure that you need it. Excess iron is poisonous and can deposit itself in all sorts of tissues such as the brain, the liver and the heart.
On the assumption that you need iron supplements, be aware that lots of people can't absorb iron very well and it might take a long time to raise levels. It took me nearly two years to get my ferritin up to optimal from a very low level.
Another thing to be aware of is that over-the-counter iron supplements are often incredibly low dose e.g. 15mg iron per pill. The supplements that the NHS prescribes contain more like 65mg iron per pill, and depending on the supplement may suggest taking several pills a day.
It is possible to buy prescribed iron pills without a prescription in the UK. You would need to go to a pharmacy and ask the pharmacist's permission. You would need to know what to buy and at what dose. And if the pharmacist refused to sell to you, just go to a different chain and different shop and ask again. I've always got my iron pills from Tesco Pharmacies or Lloyds Pharmacies without too much bother.
Would you suggest I supplement with iron to raise that?
With the range you've given, mid-range is about 160 ug/L. Your current result is approx 63% of optimal. The chances of you suffering from low iron symptoms with that level are very small or possibly even non-existent.
I think that you should try and raise your ferritin further with iron-rich food rather than a supplement, just to see if it works. If you do that, and take a vitamin C supplement of, say, 1000mg / 1g immediately before you eat an iron-rich meal (vitamin C improves iron absorption), then test your ferritin in about two months you can see whether your ferritin has gone up or down or stayed roughly the same.
If it has dropped then you probably need iron supplements to get it to optimal, and then you have the fun and games of trying to find a dose of iron supplement that keeps your level as close to optimal as possible. (For example, I try and keep my ferritin close to optimal and I take one iron supplement containing approx 65mg of iron four times a week. What works for me won't necessarily work for someone else - they may need more or less. )
Yes definitely need to raise it higher than it is, will see how it goes with it. Fatigue and lightheaded feeling plus loud tinnitus still happening. Got another GP appointment in a fortnight so need to discuss a way forward
Had my printouts of 2 previous blood tests. The latest test was 13th December after about 3 weeks of supplementing with B12 sublingual, iron tablets and a multivitamin tablet. All supplements were stopped 1 week before bloodtest was taken.
Serum TSH level 0.02 mU/L (0.35-5.50)
Serum free T4-13.8 pmol/L (7-17)
Serum B12- 385 ng/L (150-900)
Folate-10.5 ug/L
Ferratin- 99 ug/L (15-300)
Results from May 2019 when no supplement took place beforehand.
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