I hope someone may be able to advise me and I'm copying this to the Thyroid UK pages as well.
I was diagnosed with Pernicious Anaemia in December 2016 and immediately (that day) started on B12 loading injections and then quarterly for life. I have experienced minimal improvement and I'm now on the injections monthly for three months. My GP said I'm borderline underactive thyroid too (December 2016). I've just had another test after i asked my GP as a hairdresser told me I've lost loads of hair since December (I know but am past caring as I'm exhausted, can't concentrate, voice is deeper etc). I have tried the B12 Boost sub-lingual spray to no effect. The only slightest improvement I've seen with B12 injections are brittle nails improving and 24/7 headaches lessening, apart from that all other PA symptoms remain (about 30 of them as shown on the PA flowchart).
I've just been online to my records and the Path Lab report says satisfactory, no further action. I have read Thyroid UK guidelines and given them to my GP when I requested the second thyroid test. I'll give the results below as show on my record so could someone please advise me whether I should be getting meds or am I reading the "Interpretation of Thyroid Blood Tests" flowchart incorrectly.
Here goes: December 16
Thyroid function test
Serum free T4 level 12 pmol/L [10.0 - 22.0]
Serum TSH level 2.4 mu/L [0.3 - 5.5
May 2017
Thyroid function test ,
Serum free T4 level 14 pmol/L [10.0 - 22.0]
Serum TSH level 2.7 mu/L [0.3 - 5.5]
Thanks in advance.
Jane
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janepurser
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So sorry to hear you are feeling so poorly you say you were diagnosed with PA last year did you see your blood results for the B12 levels as it would help to know what they were at the time of your diagnosis. As you have been diagnosed with PA then you will probably know that your injections are for life and there is not a period when you should be with out them. Interestingly you haven't mentioned any results for Folate and ferritin as they all work together. Did your GP put you on any Folate after starting your injections?
If you have see little improvement then you need to know the results for the other two, could you post them on the forum with the B12 then it will be easier for others to suggest the way forward. Don't be put off by your GP being disinterested you need that information ASAP.
Thanks for your prompt reply and I'm sorry I didn't include the info in my original post.
In December 2016 my B12 level was 110. I know I'll be on the injections for life as GP said, plus my Mum has PA and underactive thyroid. I also has psoriatic arthritis and psoriasis.
I did ask for folate and iron plus T3 testing but this does not appear to have been carried out, that's why I'm close to tears with frustration I think!
No my GP did not put me on folate supplement.
Don't recall seeing ferritin on December blood tests but will go back online and check.
Are you supplementing with folic acid? Up to 5mg max. Whatever you can tolerate. It is a balancing act between B12 and folic acid.
Also, you need a daily multivitamin to support the increased /restored metabolism from the B12?
You may actually feel worse after you get the injection. Aggression, headache, etc. these symptoms I think arise from the metabolism kicking into high gear from the B12. These symptoms arise from the metabolic byproducts. I think they are worse the lower my B12 was before the injection.
Start a logbook of your symptoms and start monitoring your food and drink as well. Some symptoms arise 24 to 48 hours after certain foods. This delay is because the gut is involved.
Are you gluten and dairy free? These were my issues after starting B12D injections.
You will also want to be asking for more frequent injections so discuss the logbook and self monitoring with your GP as they will want evidence before increasing your doses. I'm on weekly injections (cyano) which I self inject. These are normally monthly here in the USA.
When I lived in the U.K. I got the GP to agree to first every 2 months and then monthly for the hydroxocobalamin injections.
Also look at eliminating soya from your diet. Flavoured crisps and prepared meals were my main issues.
Also with your GP you need to get past the "I've got a hypochondriac on my hands" stage that we have all had to get past when asking for more frequent injections. They at first just want to fobb you off. The logbook and keeping calm but speaking assertively is the trick. You are taking control with your logbook.
You need more frequent injections just to maintain.
Thanks so much for your advice, I really appreciate it.
With being so newly diagnosed I have been wishing to see how I am with the UK advice on B12 but I'm not entirely sure that's being adhered to anyway as I've got neuro symptoms too and I know NICE say injections every other day until improvement but I'm not getting that.
I'll get my hubby to come along with me to my GP appt as I may just have a meltdown and he can then be my advocate whilst I'm a wreck.
I take Weekly B12 (cyano), and daily folic acid, B6, B1 and the multivitamin to remains stable and, I hope, repair the nerve damage.
Do you keep a log book and try to score all your symptoms on a daily basis? Your own severity scale is okay. You will find your own marker symptoms.
I've found the logbook an essential tool to understand the timing of a symptom appearing / disappearing after injections or eating food/drink. There is a 3 to 48 hour delay is most cases because the gut in involved.
Once you identify a cause, you can understand/predict how your body is going to react. Then discuss with your GP and show the "evidence " from the logbook.
You will get fobbed of as a hypochondriac at first but remain calm and be confident that you know how your body is going to react. You need to train your GP like we all have had to do.
You probably need more frequent injections to even out the ups and down of the roller coaster ride.
holehead - whilst the body needs folate to fully metabolise B12 and folate and B12 are used together iron is not involved in the process.
ferritin is a protein that binds to iron allowing it to be used in the body so is a good indicator of iron levels.
if you have absorption problems then it isn't uncommon for iron to also be affected, leading to an iron based anaemia, the symptoms of which have a large overlap with those of the macrocytic anaemias caused by B12 and folate deficiencies.
There is no concept of people being able to close their own threads here.
Administrators on each forum can use the Turn off replying option, but that is not something usually done except when there is a special reason to do so.
I'll just say "Ta so much everyone but no need to reply to my query as I've received a number of responses to proceed with and there's only one much my addled brain can cope with at the mo".
Hi janepurser just one more thing before I get "cut off" according to both the NICE and BNF Guidelines if you have P'A and are suffering neurological symptoms then your injections should be every eight weeks and not twelve which you stated you were having.
Click on the link below and then on "Scenario Management" and scroll down to "Treatment for B12 Deficiency"
What's so banned or informative about that website link you just put up here as it's NOT available here in Ireland??? lol?? I didn't think anything on the internet was banned except if you lived in Places like China etc. ??
Here are the NICE Guidelines in full I just hope I don't get the internet KGB on my tail. It may be that your doctors don't adhere to UK guidance.
Scenario: Management of anaemia - vitamin B12 and folate deficiency
Age from 16 years onwards
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Assessment
How should I assess a person with vitamin B12 or folate deficiency anaemia?
Assessment should include determining the underlying cause of vitamin B12 or folate deficiency.
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Assessing B12 deficiency
How should I investigate a person with vitamin B12 deficiency anaemia in primary care?
Determine whether there is an underlying cause for the serum vitamin B12 deficiency (for example pernicious anaemia), by checking for serum anti-intrinsic factor antibodies.
Note that testing for anti-intrinsic factor antibodies is recommended in people with strong clinical features of B12 deficiency, such as megaloblastic anaemia or subacute combined degeneration of the cord, despite a normal vitamin B12 level. For more information, see the section on Interpreting results of investigations.
Checking for gastric anti-parietal cell antibodies is no longer recommended to diagnose pernicious anaemia.
Determine whether the person has experienced complications of anaemia, or of vitamin B12 deficiency.
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Basis for recommendation
The recommendations about checking for an underlying cause for B12 deficiency are based on expert opinion in the British Journal of Haematology Guidelines for the diagnosis and treatment of cobalamin and folate disorders[Devalia et al, 2014], and an article on macrocytic anaemias in the ABC of Clinical Haematology [Hoffbrand and Provan, 2007].
Checking for anti-intrinsic factor antibodies
Anti-intrinsic factor antibody is extremely specific for pernicious anaemia, with a high positive predictive value of 95%, but a low sensitivity of 40–60%. This means that about half of people with pernicious anaemia will have anti-intrinsic factor antibody [Andres et al, 2004; Longmore et al, 2007]. If anti-intrinsic factor antibody is present, pernicious anaemia is very likely, but its absence does not rule out a diagnosis of pernicious anaemia [Devalia et al, 2014].
The recommendation about checking for anti-intrinsic factor antibodies in people with a normal serum B12 level if there are strong clinical features of B12 deficiency to check for pernicious anaemia is based on expert opinion in Guidelines for the diagnosis and treatment of cobalamin and folate disorders published by the British Journal of Haematology [Devalia et al, 2014].
Not checking for gastric anti-parietal cell antibodies
Anti-parietal cell antibody is found in 80% of people with pernicious anaemia, but also in 10% of people without it. However, it has a low specificity of about 50%, which is much lower than that of anti-intrinsic factor antibody [Andres et al, 2004]. If anti-parietal cell antibody is not present it is unlikely that the person has pernicious anaemia, but its presence is not diagnostic as it can occur in other conditions (for example atrophic gastritis) and older people (16% of normal women over 60 years of age) [Carmel, 1992; Hoffbrand et al, 2006]. As a result, it is no longer recommended as a diagnostic test for pernicious anaemia [Devalia et al, 2014].
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Assessing for folate deficiency
How should I investigate a person with folate deficiency anaemia in primary care?
Determine whether there is an underlying cause for the folate deficiency.
If folate levels are low, and the history suggests malabsorption, check for coeliac disease with anti-endomysial or anti-transglutaminase antibodies (depending on the local laboratory).
Determine whether the person has experienced complications of anaemia or folate deficiency.
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Basis for recommendation
This recommendation is based on an article on macrocytic anaemias in the ABC of Clinical Haematology [Hoffbrand and Provan, 2007], a textbook chapter on megaloblastic and other macrocytic anaemias [Hoffbrand et al, 2006], and a patient pathway on anaemia [NHS Scotland, 2005].
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Referral
When should I refer a person with vitamin B12 or folate deficiency anaemia?
Seek urgent advice from a haematologist if the person has neurological symptoms, or is pregnant.
Refer to a haematologist if the cause of vitamin B12 or folate deficiency is uncertain following investigations, or the suspected cause is haematological malignancy (urgently refer) or other blood disorder.
Refer to a gastroenterologist if:
Malabsorption of vitamin B12 (other than due to pernicious anaemia) or folate is suspected.
The person has pernicious anaemia and gastrointestinal symptoms, especially if there is a suspicion of gastric cancer (for example co-existing iron deficiency). The urgency of referral will depend on the nature of the symptoms.
The person is folate deficient, and antibody testing suggests coeliac disease (positive for anti-endomysial or anti-transglutaminase antibodies).
Consider referral to a dietician if vitamin B12 or folate deficiency is thought to be due to a poor diet.
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Basis for recommendation
These recommendations are pragmatic advice based on an anaemia patient pathway [NHS Scotland, 2005], a chapter from the ABC of clinical haematology on macrocytic anaemias [Hoffbrand and Provan, 2007], and guidelines from the National Institute for Health and Clinical Excellence on referral for suspected cancer [NICE, 2005].
People with pernicious anaemia have an increased risk of gastric carcinoma or gastric polyps (2–3 times more common than in age- and sex-matched controls) [Hoffbrand and Provan, 2007]. CKS considered this information and expert opinion from reviewers of this CKS topic when making the recommendation about when to refer to a gastroenterologist.
Further tests which may be considered by specialists if the cause of vitamin B12 deficiency is uncertain include [Hoffbrand and Provan, 2007]:
Radioactive vitamin B12 absorption studies.
Bone marrow examination (to exclude myelodysplasia, aplastic anaemia, myeloma, or other marrow disorders associated with macrocytosis).
Endoscopy and gastric biopsy (vitamin B12 deficiency) or duodenal biopsy (folate deficiency).
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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).
In vegans, this treatment may need to be life-long, whereas in other people with dietary deficiency replacement treatment can be stopped once the vitamin B12 levels have been corrected and the diet has improved.
Advise people to eat foods rich in vitamin B12. Foods which have been fortified with vitamin B12 (for example some soy products, and some breakfast cereals and breads) are good alternative sources to meat, eggs, and dairy products.
For more information about using vitamin B12 products, see Prescribing information.
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Basis for recommendation
Vitamin B12 replacement treatment
Vitamin B12 replacement therapy is a well established standard treatment and this recommendation is supported by the British National Formulary [BNF 64, 2012], Summaries of Product Characteristics (SPCs) [ABPI Medicines Compendium, 2002; ABPI Medicines Compendium, 2005], a Canadian guideline [British Columbia Medical Association, 2013], and expert opinion in medical textbooks [Hoffbrand et al, 2006; Hoffbrand and Provan, 2007].
Hydroxocobalamin is preferred to cyanocobalamin in the UK. This is because hydroxocobalamin can be given at maintenance dose intervals of up to 3 months, as it is retained in the body for longer [BNF 64, 2012].
Dietary advice
The recommendation on vitamin B12 fortified foods is based on information from the national Expert Group on Minerals and Vitamins [Expert Group of Vitamins and Minerals Secretariat, 2002], a guidebook (Nutritional Anaemia) [Badham et al, 2007], and on expert opinion from medical textbooks [Hoffbrand et al, 2006; Hoffbrand and Provan, 2007].
Expert feedback suggests that dietary changes are unlikely to have an effect in the majority of people with pernicious anaemia.
What if a person is still symptomatic despite maintenance vitamin B12 treatment?
If a person's symptoms recur before the next injection is due, seek specialist advice from a haematologist.
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Basis for recommendation
Some experts acknowledge that there is a small group of patients who report a recurrence of their symptoms earlier than 3 monthly.
CKS could find no guidelines or evidence on the management of this group.
Feedback from expert reviewers differs with regard to whether or not more frequent intramuscular injections of hydroxocobalamin 1 mg are required, and if they are, what regimen to suggest.
In the absence of evidence and expert consensus, CKS suggest seeking specialist advice in this situation.
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Treatment for folate deficiency
How should I treat a person with folate deficiency anaemia?
Give dietary advice: good sources of folate are broccoli, Brussels sprouts, asparagus, peas, chickpeas, and brown rice.
Prescribe oral folic acid 5 mg daily.
Check vitamin B12levels 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.
In most people, treatment will be required for 4 months. However, folic acid may need to be taken for longer (sometimes for life) if the underlying cause of deficiency is persistent.
For information on folic acid supplementation in pregnancy, see the CKS topic on Pre-conception - advice and management.
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Basis for recommendation
The examples of good dietary sources of folate are from the Food Standards Agency [Food Standards Agency, 2008].
Folic acid supplementation is a well-established, standard treatment for folate deficiency, and this recommendation is supported by the British National Formulary [BNF 64, 2012], a Canadian guideline [British Columbia Medical Association, 2013], and expert opinion in medical textbooks [Hoffbrand et al, 2006; Hoffbrand and Provan, 2007].
Treatment with folic acid usually results in a rapid improvement in symptoms. In most people, treatment will be needed for only 4 months, as poor diet is the most common cause [BNF 64, 2012]. Folic acid supplementation for 4 months brings about haematological remission and replenishes body stores.
Vitamin B12deficiency should be excluded before presuming that a macrocytic anaemia is due to a folate deficiency. If the underlying cause is actually vitamin B12 deficiency but treatment with more than 1 mg folic acid a day is given, this can give the impression that the anaemia has been successfully treated, but vitamin B12 neuropathy will progress and may become irreversible [Badham et al, 2007].
Concerns have been expressed in recent literature about the potential for harms with long-term supplementation with high folic acid doses [Powers, 2007]:
A possible link has been found with folic acid and an increase in the progression rate of pre-cancerous lesions to cancer (particularly colorectal cancer). However, there is inadequate evidence from human trials to confirm this.
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Monitoring
What monitoring of vitamin B12 or folate deficiency treatment is recommended?
A full blood count and reticulocyte count should be performed:
After approximately 10 days of treatment, to document the response.
A rise in the haemoglobin level, and an increase in the reticulocyte count to above the normal range, would be expected as a sign of a positive treatment effect.
If the person has vitamin B12 deficiency anaemia and there is no improvement with therapy, check serum folate level (if this has not already been done).
After 8 weeks, to confirm a normal blood count.
On completion of folic acid treatment, to confirm a response.
Ongoing monitoring of people being treated with vitamin B12 or folic acid is generally considered unnecessary (unless a lack of compliance with folate treatment is suspected, or anaemia recurs).
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Basis for recommendation
These monitoring recommendations are based on available guidelines [Hutchinson, 2006], a Best Practice Review [Smellie et al, 2005], an article on the pitfalls of testing for macrocytosis [Galloway and Hamilton, 2007], the British National Formulary [BNF 64, 2012], and pharmaceutical manufacturers advice [ABPI Medicines Compendium, 2012a]. Feedback from expert reviewers was also taken into account.
The manufacturer states that regular monitoring of the blood is advisable, as hydroxocobalamin should not be given before a megaloblastic marrow has been demonstrated [ABPI Medicines Compendium, 2012a]. However, expert opinion in a Best Practice review is that people with pernicious anaemia who receive vitamin B12 replacement should not become vitamin B12 deficient, therefore in most cases further monitoring would seem unnecessary, although practices vary and some haematologists would recommend annual full blood counts [Smellie et al, 2005].
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Additional Guidelines within the UK are:
Treatment of cobalamin deficiency
"Current clinical practice within the U.K is to treat cobalamin deficiency with hydroxocobalamin in the intramuscular form outlined in the British National Formulary, BNF,
Standard initial therapy for patients without neurological involvement is 1000 μg intramuscularly (i.m.) three times a week for two weeks, then every three months.
The BNF advises that for Pernicious anaemia and other macrocytic anaemias patients presenting with neurological symptoms should receive 1000 μg i.m. on alternative days until there is no further improvement, then 1 mg every 2 months.
However, the GWG recommends a pragmatic approach in patients with neurological symptoms by reviewing the need for continuation of alternative day therapy after three weeks of treatment"
Hope this helps.... I've had my B12 shot this morning and that did....
Clive thank you so much for your reply. Glad you didn't have to type it all yourself. Can't see anything that would ban it here in Ireland though except doctors not wanting us to know more than they do!!! Which of course we do or have to in order to stay well. My doctor actually phoned me yesterday to see how I was. Never happened before so I was shocked and asked what she wanted to know as I went to her last week with a list of symptoms determined to be listened to. After half an hour she just wanted to be rid of me as I was taking up too much of her time. The nurse that gave me my injection next day was, and is always more helpful and I suspect reported back to the doctor?? I am now going into AMU for a day shortly to sort out what's wrong. I've had PA for about 25 years now but recently found injections aren't working as well.
My experience is similar in that about six years ago after nearly 40 years with P.A. I was having a return of symptoms in the run up to my next injection but my "one size fits all" doctor laughed at me and saying "it can't be the P.A. because you are getting the B12 injections" adamantly refused to increase them
It was than that I joined the Pernicious Anaemia Society and found that I was not alone in the world and learned all I could from the experiences of others.
Tomorrow is the 45th anniversary of my first B12 injection in 1972 and I'm still "clivealive" at 75
Thank you Clive. But what happens if injections don't work anymore? I only joined here last week and can't believe the problems everyone seems to have with doctors. I thought it was only my one and me being nosey. I'm being made to feel it's all in my head without actually saying it?
It might just be that like me you need more frequent injections or maybe you have something else going on not connected to the P.A.
I have type 2 Diabetes (last two years) which affects energy levels and pleural plaques (from exposure to asbestos over 60 years ago) which affects my breathing but I do know the neuropathy that is associated with B12 deficiency.
It's not in your head it's down to a widespread lack of knowledge in the general medical profession on Vitamin deficiencies.
Getting a call from my doctor on Monday after seeming to be wasting her time on Friday resulted in getting two injections a week for the next three weeks and re testing AND the nurse said today when getting another injection that the doctor had put on the computer that I was to decide if I needed more depending how I was feeling. This is a FIRST and I'm smiling silently here with the warm feeling that I MIGHT have won this round??? I also have asthma and COPD both under control. I get the odd asthma attack but have been on a special antibiotic (Azithromycin Teva 250mg) for the past 4 months (1 week left) then I'll see?
Thank you again for all your encouragement and help. It's helping me to be more assertive and asking more questions. Not just leaving my health to doctors. Sending the luck of the Irish to you and yours. Jill
That's absolutely brilliant and of course there is an added bonus that your doctor's next patient presenting the same problems will get the right treatment straight away and without a struggle.
What was it that "tipped the balance" do you think?
Ta for the info and yes I have mentioned it to my GP. Like everyone else it seems I now have an uphill battle to contend with.
Thanks everyone for your advice and support I do very much appreciate it. I'll close this thread now as I've lots to work with and my addled brain can only cope with small amounts at the mo 🙄
Just a thought but could it be Hashimoto's thyroid? All of my thyroid test where within normal range but I was sympathetic so Doc ran a thyroid antibodies test and sure enough it came back way high out of range and I was diagnosed with hashimoto's. So proof your regular thyroid test can be normal but you can still have a thyroid issue.
I haven't read any other replies but I was in the same boat last year. (Sorry, I know there's others who will advise you better with results), but I'll give you general advice.
You said you had 6 loading doses. I assume 3 a week. Quarterly injections in most cases are not enough.
I had to turn to self injecting as doctor was only giving me same as yours.
I had weekly shots of B12 and started feeling better after 9-10 injections (that's 9-10 weeks).
You must also take Folic Acid daily as they work together with B12. Doc gave me 400ug 1 tablet daily.
You must also get your Iron levels checked ! If it's low you'll feel terrible.
Also Vit D also if low makes you feel awful.
So these 4 things are main things that make a huge difference.
B12
Folic Acid
Iron
Vit D
I take all 4 and I know inject every 2 weeks, as in the 3rd week I start to feel low B12 symptoms again.
You can try monthly injections first and see how you feel, usually you can tell when you need your next injection. I used to last up to 3 weeks then feel really bad again.
Also have a general good diet and get a good multivitamin like Wellman/Wellwoman.
I had 9-10 injections (1 per week), and I now inject once every 2 weeks.
I'm just giving you my example. I done all the above and it made a huge difference! Takes a bit of time !
Also depending on what you can do you need to get a bit active. Even a 20 minute walk a day (if you can manage makes a big difference). If you can't manage 20 minutes do less or do what you can do, but being active really helps although you might find it hard in the beginning
If you choose to self inject its very easy to buy B12 injections online and they're quite cheap.(it was the only way for me but worth it)
I hope someone can advise you better on the Thyroid part.
In the meantime I hope this helps.
If you need to ask anything I'm more than happy to help.
Don't worry, it will take time an. You'll see improvement !
Don't give up. There's always a way looking at your symptoms.
Thanks so much for your advice which I will follow up.
Most days I walk about 7,000 steps even though it is an absolute slog I do it as I know it's vitally important for cardiovascular reasons if nowt else. Fortunately I live by the seaside so it's great to walk along the seafront and that motivates in itself. Some days I just can't do it and other days I can do the recommended 10,000 steps per day. It's not necessarily enjoyable but it's achieved. Funnily enough this was one of the big things for me to notice something wasn't right, the fact that I wasn't gaining any enjoyment from walking along the seafront and sand-dunes but I didn't realise I wasn't well I just thought I was a miserable old bag, heh heh.
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