This is my first post on the PA forum. I was diagnosed at the beginning of January and had my loading doses in February. Ist 12 week injection due next week- yipee!! can hardly wait.
Now to my question: does anyone else have bleeding gums, nose bleeds and bleed well when you cut your self? Are these PA symptoms or could it be that i'm lacking in Vitamin K?
My blood test level for B12 was 101ng/L with normal range listed as (150-1000). I was told by the nurse that I tested positive for the intrinsic factor but I haven't seen the results. I'm currently supplementing with sublingual drops as I don't feel that the initial injections have worked.
My folate level was 7.2ug/L (2.0-18.8) range. I was told this was normal.
My Vitamin D level was low i can't find the letter for the range but the doctor said I could take supplements if I wanted to. I am taking 25ug of vitamin D3 daily.
I have an under active thyroid which I've had for 15 years. I have lots of other symptoms, pins and needles, tinnitus, aches and pains, stomach problems,- I could like others go on, but I don't want to sound like a hypochondriac.
I'm thinking of supplementing Vitamin K, any advice? If so what is considered a safe dose?
Many thanks
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shipscat
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Did your loading doses continue until your symptoms stop improving? The guidelines say that it should, you probably need them more frequently than every 12 weeks, most do. Your folate is low and that should be higher for b12 to be more effective.
You are taking a very small dose of vitamin d, especially if you are diagnosed as deficient. Bleeding gums are a symptom of low b12 I think. Generally it's advised to take vitamin k2 with vitamin d so the extra calcium goes to your bones and teeth instead of going to the arteries.
Thanks for your reply. I'm going to make an appointment with the doctor after my injection next week as I have only had temporary improvement in my symptoms. I bought the Vitamin D dosage that was advised on the info from the doctor. If I find the sheet I will post my results for comment. I remember it was low but not seriously so at the time. I also had enlarged red blood cells which led me to request a test for B12. I wasn't actually offered a test straight away.
The doctor didn't recommend folate as the test result said normal but after reading a lot of these posts I wonder whether the loading dose might have lowered my folate level even further.
My thyroid is checked annually. I'm on the lowest dose of thyroxine at 25mcg and have been for 15 years.
What dose of Vitamin K is recommended? I want to be careful not to cause an imbalance with other vitamins. I have a reasonably balanced diet and eat meat.
Bleeding gums and clotting issues can be directly caused by low thyroid hormone levels.
Few people need 25 micrograms of levothyroxine. One of the reasons is that that low a dose can cause TSH to drop, and leave your own thyroid making less thyroid hormone than you are taking! (This doesn't always happen - but it can.)
I strongly suspect that you are under-treated - as well as that very obvious B12 deficiency.
thank you, its all so complicated. Looks like I will need to request more blood tests. I have felt tired for years when I used to be so energetic. My thyroid blood tests have always come back as normal whilst I've been taking thyroxine. I suppose if that is the case I don't think I will be offered an increase in the dosage.
Don't underestimate the lack of vitamin D. Mine was also very low. GPs often tell you to supplement yourself as it is cheaper off the shelf than on prescription. I have been on 5000 Ig vitamin d for 4 months and it only rose from 30 to 50 and 100 is believed to be better......when I added k2 I started to feel so much better. It is a balancing act getting the thyroid, b12 and vit d to optimal levels but worth it. Unfortunately they all have similar symptoms especially fatigue.
As you probably already know, treatment for PA is for life and your GP should be treating your neurological symptoms, as defined by the BNF in the various BCSH, NICE, UKNEQAS guidelines:
"The BNF advises that patients presenting with neurological symptoms should receive 1000 g i.m. on alternative days until there is no further improvement."
Adequate treatment with injections and supplements from the outset is essential to avoid permanent neurological damage and many doctors fail to realise the importance of this:
"The treatment with high dose B12 injections is not only completely safe but fortunately also very effective. With the right treatment patients can recover completely. Starting straight away with treatment is essential, as is the continuing treatment in order to give the body enough B12 to fully recover. Therefore it is essential that patients are no longer exposed to the real danger of irreversible symptoms because of the imaginary fear of overdosing."
“In the event of any discordance between clinical findings of B12 deficiency and a normal B12 laboratory result, then treatment should not be delayed. Clinical findings might include possible pernicious anaemia or neuropathy including subacute combined degeneration of the cord."
Autoimmune thyroid problems and PA/B12 def. are often interlinked, with symptoms overlapping and leaky gut/intestinal disease the source. I believe this is at the bottom of all our own family autoimmune/thyroid/B12 issues and found the following from Dr Tofts' book, 'Understanding Thyroid Disorders', published in association with the BMA, helpful:
"There is considerable debate about the correct dose of thyroxine. The consensus is that enough thyroxine should be given to ensure that levels of T4 in the blood are at the upper limit of normal or slightly elevated and those of TSH at the lower limit of normal, or in some patients undetectable."
PS. Re. Bleeding gums and sore mouth, these symptoms disappeared upon supplementing with Jarrows 5000 mcg. Methylcobalamin SL .
Finally, higher doses of D3 are best taken with vitamin K2 to ensure D3 goes into the bones and not the arteries.
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