I'm new to this forum. I recently had private tests done as I suspected I may be hypothyroid, but the B12 results have come back abnormal at 175; and the folate and Vit D are in range but look a bit low. I've been tired, so dizzy I have to take breaks walking to the bus stop, dry skin and hair, sore joints.
Called the NHS GP on Friday and explained that I haven't felt this tired or dizzy since I had glandular fever as a teen in the 90s. Lesson learnt, he had the prescription pen out for anti depressants, but I did manage to explain that I am calling about physical symptoms only.
He's suggested a PA test is done. Does anyone here know what the NHS should include in order for the PA test to be thorough? Also, are there other conditions which can cause B12 deficiency which peopl here have heard of / have had tested as a potential cause?
Finally, if the doctor isn't able to give me vitamin injections (as I'm getting the sense you need to declare war to get these on the cash strapped NHS) has anyone gone private for these in London and got a decent deal? I'd also consider objecting myself but I'm not sure how you monitor how much to injevt without actually over correcting, and whether this can be dangerous.
Sorry this is a long post with lots of questions. I'd appreciate any advice people can offer based on your own experience, and it seems many of you have had a bit of a struggle.
Results are here for those interested,
TSH: 5.6 (abnormal) (0.27 - 4.2)
Total T4: 71 nmol/l (59 - 154)
Free thyroxine: 15.6 pmol/l (12 - 22)
Free T3: 5.93 pmol/l (3.1 - 6.8)
Reverse T3 - next week
Thyroglobulin antibody: 15.6 iu/ml (0 - 115)
Thyroid peroxidase antibodies: 7.2 iu/ml (0 - 34)
Vitamin b12: 175.2 pg/ml (abnormal) (191 - 663)
Folate: 9.99 ug/l (4.6 - 18.7)
25 OH Vitamin D: 75.9 nmo/l (50 - 200)
Thank you very very much.
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Bonnitac
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Can't comment about the hypothyroidism, but your B12 is low.
The doc should, at a minimum carry out a Full Blood Count (to look for macrocytic anaemia) and an anti-IF (Intrinsic Factor) antibody test (to look for PA). However, not everybody with PA has macrocytic anaemia and not everybody with PA gives a positive result for the anti-IF test.
So the doc should also do a test for methylmalonic acid and, possibly, homocysteine. These are two chemicals that get used up in reactions mediated by B12. With a B12 deficiency they build up in the blood - so raised levels are a good sign of such a deficiency.
Other possible causes of low B12 are - veganism, pregnancy, gastric surgery, nitrous oxide and some drugs (particularly PPIs such as omeprazole and metformin, for diabetes).
The doc should try to identify the cause - but should do so while treating you with a course of injections. Some of the effects of a deficiency aren't nice and delay of treatment should be avoided. And if the cause cannot be identified then it should be assumed it's not something temporary and your treatment should continue for life.
Work your way through the pinned posts over on the right ---> for more info. And feel free to ask any questions you may have.
Hi Bonnitac at least your doctor is thinking along the right lines in suggesting you are tested for P.A.
I'm not a medically trained person but there are others on here who can give you good advice.
I will say however that if you are found to be B12 deficient (which your low reading suggests) or to have P.A. the treatment via injections is relatively cheap compared to other illnesses.
You asked about "causes"...
On page 23 in the book “Could it be B12? – an epidemic of misdiagnoses” by Sally M. Pacholok R.N., B.S.N. & Jeffrey J. Stuart, D.O. there is a list showing:-
Who’s at greatest risk for B12 Deficiency?
"Anyone at any age, can become B12 deficient. Thus you need to be tested immediately if you develop the symptoms described in this chapter. However, certain people are at an elevated risk. They include the following:
Vegetarians, vegans and people eating macrobiotic diets.
People aged sixty and over
People who’ve undergone any gastric and/or intestinal surgery, including bariatric surgery for weight loss purposes (Gastric bypass).
People who regularly use proton-pump- inhibitors. H2 blockers, antacids, Metformin, and related diabetes drugs, or other medications that can interfere with B12 absorption.
People who undergo surgeries or dental procedures involving nitrous oxide, or who use the drug recreationally.
People with a history of eating disorders (anorexia or bulimia).
People with a history of alcoholism.
People with a family history of pernicious anaemia.
People diagnosed with anaemia (including iron deficiency anaemia, sickle cell anaemia and thalassaemia).
People with Crohn’s disease, irritable bowel syndrome, gluten enteropathy (celiac disease), or any other disease that cause malabsorption of nutrients.
People with autoimmune disorders (especially thyroid disorders such as Hashimoto’s thyroiditis and Grave’s disease) Type 1 diabetes, vitiligo, lupus, Addison’s disease, ulcerative colitis, infertility, acquired agammaglobulinemia, or a family history of these disorders.
Women with a history of infertility or multiple miscarriages.
Infants born to and/or breast fed by women who are symptomatic or are at risk for B12 deficiency."
You apologized for your long post, I apologize for my long response, but do you "see yourself" in any of the above people?
Please don't think about self injecting or supplementing with B12 until you get the results of your next tests as that would just skew them and make it difficult to get treatment via your surgery.
Finally, there is life after P.A. and I'm still "clivealive" at 75 after 45 years.
Thanks Clive, very kind of you to provide such a thoughtful response. I see myself in a few of those points. I was diagnosed as PCOS and Insulin Resistant some years ago. I did take Metformin for 6 months this year but stopped in July when I started feeling this unwell. I also took Proton Pump Inhibitors in approx 2009 just for one year as I was suffering really bad heartburn. I had terrible heartburn through university and my 20s but this has completely subsided in my 30s for some reason. Knowing that these are factors is helpful and I will discuss with the GP on Monday morning.
other causes not mentioned specifically by fbirder include h. pylori infection, genetic abnormalities affecting the ileum, tapeworm (generally a scandinavian problem from eating raw fish products), liver problems. However the most common is PA.
As fbirder says you should be treatment needs to start first then look for the cause - though personally I'm not so convinced by looking for the cause as all the tests for PA are prone to giving false negative results, and the treatment is the same unless it is shown to be dietary (veganism with no supplementation of B12)
Your TSH is over range and this would suggest your thyroid is struggling. However - and this is is unusual - your FT3 is good in the range. You do not have auto-immune thyroiditis - Hashimotos - as anti-bodies are below range.
The FT4 has to convert into the T3 - so you do not have a conversion issue - which often happens when B12 etc is low.
Have you posted these Thyroid results on Thyroid UK - here on HU ?
What time of day did you have theses tests ? - and were they fasting ones ? Also do you have any previous test results for comparison ?
Hi Marz. They were st 9am not fasted - probably had a coffee before. I posted them on the Hypothyroid board too and a few people have suggested it's hypo. before this I've only ever had TSH tested and that was 3 in December 2015 and 2.8 in July 2016. I have been under some stress lately so it's possible I've thrown things out temporarily. The priority for me today is to find somewhere to give loading doses of vitamin b12 and to ask the NHS for the PA tests mentioned in these comments. Wish me luck.
I certainly do wish you luck with your B12 injections. Maybe order your own and find someone to do them for you until you feel able. I am fortunate as I have 3 ex nurses in my yoga classes
Went to the GP today and he is repeating all tests I had above plus testing for pernicious anaemia. He did say they don't generally treat until TSH is 8 but depending on the test results he may refer me to an endocrinologist instead.
In the meantime I've had my first vitamin b12 shot at this place I found which offers the lowest price I'd found in London of £35. harpalclinic.co.uk . Thinking of going 3 X a week for the next fortnight as I've read that's the correct loading period. Or might learn to inject myself. I'll let you know when I hear back. Thanks to all those who offered advice xx
You'll have to tell your GP that you had a B12 jab - because it will make the result of any blood test fairly meaningless. Otherwise you'll never get NHS treatment.
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