I would really love some thoughts before seeing my GP please!
I have had some great advice from Thyroid UK and seems like firstly I need to get my vitamins under control!
Main symptoms;
-painful neck and shoulder muscle
- feel so exhausted I could cry
- constant sore throats
- numbness in my hands and forearms - has started to spread to my face - mostly left side in a pattern where a man’s beard might be
- really heavy and prolonged periods
- weight gain no matter how well I eat and a nice puffy face!
- headache
- dry itchy skin and eye
- cold all the time
- generally feel I am about 90 years old when I’m actually 37!
I had some bloods 6 weeks ago
TSH - 4.5 (0.2-4)
T4 - 13 (10-20)
This prompted my GP to do further bloods this week:
B12 - 218ng/l (211-911)
IgA - normal
Ferritin - 48ug/l (10-322)
TPCa - <28 iu/ml (<100)
Folate - 4.4ug/l (5.4-24)
I have a strong family history of autoimmune diseases - lupus, RA and thyroid disorders. I myself have been bothered by stomach issues for as long as I can remember - and was treated once for H.Pylori infection.
my GP initially went down the “do you think this is psychological” route and suggested my blood results are not bad enough to explain my symptoms.
Any thoughts on what further tests to try and demand (I have an appt for private thyroid tests to include t3 and vitd as advised by thyroid people)
Thank you!
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KRex
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Welcome here. Sorry to read that you feel awful. First things first, if you haven’t already, please apply for your Medical Records in hard copy with standardised documentation from the Information Commissioner’s Office. It is called a Subject Access Request.
Just so you know - vitamin is short for Vital Amine. Hypothyroidism especially Hashimoto’s disease and P.A./B12D go hand in hand.
Family History
Yes, lots of Autoimmune Diseases
Medical History
After having your baby you just have felt awful (4 years ago). Pregnancy, labour, postnatal period do put massive demands on a woman’s body and can be the physiological trigger for diseases/illnesses/conditions. Also you have stomach issues - I do hope you have been tested for Coeliac Disease. I can see you had IgA but it’s a tTg-IgA. Once tested and with the blood result - if it’s negative then it might be worth going gluten free for 6 weeks as a trial. Lots of people can have Non Coeliac Gluten Sensitivity.
Keep a food diary and note Stools. They should be as the Bristol Stool Chart. Guts U.K. is a good resource too.
You’ve had H.pylori and antibiotics which kills the nasty infection but also the good bacteria in the gut. These are needed to metabolise vitamins and minerals.
PA/B12D is poorly understood by the medical profession. It is worth becoming a member of the PA Society to have accurate literature and read Sleepybunny’s post.
The blood result cut-offs are set far too low. I’m not impressed with your B12 level, your symptoms, your Family History, Medical History and the fact that you have been asking for help for 4 years. So, KRex your individual Clinical Picture.
It is worth booking another GP appointment and ask to speak with a Female GP. Be prepared to mention the D word - discrimination. As women, we have different bodies, biochemistry and the XX chromosome. Because we are able to carry, give birth and care for babies it makes us more susceptible to certain diseases/conditions. The psychological component is due to arrogant doctors refusing to listen and take us seriously. We know our own bodies.
Ask for a trial of loading doses of Hydroxycobalamin (B12) injections.
Well I had my GP appt and it was quite mixed. She wants to redo some bloods. I have attached a pic of what she’s requested.
She suggested I have carpal tunnel and advised splints. Advised sleeping tablets.
She said all my bloods are fine except borderline tsh and folate. I did challenge about vitb12, but she was absolutely adamant my levels are fine and this is not what’s causing my issues.
Px for folic acid and lansoprazole (I’m likely not going to take this one as I had it years and years ago and found it made things worse when I tried to come off it!)
I’m not sure where else to go from here - seeing a diff GP for follow up end Feb.
I feel she did listen mostly and was trying to help but I don’t feel confident in how she fobbed off my b12 and ferritin.
Search online for UK document "NICE CKS Anaemia - B12 and Folate deficiency".
Read it thoroughly when you have time/energy including the section on Background Information.
Find local b12 deficiency guidelines used by your ICB (Integrated care Board) in England or Health Board - Wales/Scotland and compare them with NICE CKS document.
Some local B12 deficiency guidelines are not as helpful as they should be. See blog post below.
Point 1 in above link is about under treatment of B12 deficiency with neurological symptoms present.
Vital to get adequate treatment for B12 deficiency. Delayed or inadequate treatment increases the risk of developing permanent neurological damage.In severe cases, there may be damage to the spinal cord. Severe damage due to B12 deficiency can occur in people with normal range serum B12.
May be worth discussing article below with GP if you have concerns over neurological symptoms.
PAS article about SACD, sub acute combined degeneration of the spinal cord
Some UK forum members choose to treat themselves if NHS treatment is not enough.
Some get extra injections from a private GP or beauty salon, some try high dose oral B12 but this doesn't work for some people and some as a last resort turn to self injection (SI). SI is mentioned in one of the pinned posts.
More B12 info in pinned post "Various PA /B12 D resources".
I am not medically trained just someone who suffered for years from unrecognised and untreated B12 deficiency.
Thanks for this reply - I will take my time and read all the links.
My GP is 100% adamant my b12 is fine and is not the cause of whatever is going on. She prescribed folic acid and lansoprazole. Ordered a few more blood tests inc repeat if thyroid function. She also suggested I have carpal tunnel and need sleeping tablets 😩
She did take my family history seriously, but I was surprised how sure she was it cannot be b12 - I said surely it is only just within range and she said nope it is fine. She said all other bloods are good except borderline tsh.
I am in UK and really wish I had private healthcare right now! But I’m not even sure who I would need to see or what tests would be helpful.
My cousin had 13 years of this before getting dx of pernicious anaemia.
Going private is sadly no guarantee of better treatment/diagnosis of PA/B12 deficiency (from personal experience) although I hope you have a positive experience if you do.
There is an iron clinic in East of England that has been mentioned by a forum member.
I think forum rules prevent me from giving more details.
You mention risk factors for PA eg
1) auto-immune conditions in family
2) relatives with diagnosed PA
3) symptoms consistent with B12 deficiency
If you query things with your GP, how about doing it in writing and maybe copied to practice manager as well.
Writing a letter gives you time to plan what to say and I think it's harder for GP to ignore. Useful to have a paper trail in case you need to make a formal complaint. Always keep copies.
See letter writing link I posted in other reply. I think Point 1 and Point 5 in that link are particularly relevant to you.
Letters could contain blood test results, symptoms list, relevant personal and family medical history, quotes from UK documents but keep them short. I think more chance of a GP reading them if short.
Has your GP got a list of all your symptoms?
I used PAS symptoms checklist below and added extra symptoms at bottom of page.
Lots of info on here from people with more knowledge than me!!!!!
Have you tested your Active B12? My total serum B12 was 444 highest it has ever been but my Active B12 was 28.6 three points higher than considered deficient. I did a Methylmalonic Acid Urine test and that showed up as high, both tests can be an indication of being deficient in B12. Although the MMA test can be high if you have a kidney problem as well, I believe, please read up on it yourself and don't take my word. I don't have a kidney issue.
I also got my GP to test for Autoimmune Antibodies. Mine came back negative for Intrinsic Factor and Positive for antibodies to the stomach Parietal Cells. I can't explain exactly how it all works so I would suggest looking at the PAS website which is what I did and found it very useful.
I have Hashimotos Thyroiditis, my mum had PA and two members of the family had RA.
The NHS normally don't test Active B12 or MMA, unless you really lucky, so I had to do this privately. The guidelines on B12 deficiency are changing in March, hopefully, so if you interested you might get them done on NHS then.
I am thinking of testing privately for PA myself, MMA.
Do you know where you can see what changes are being proposed in March?
I think I have to be much more assertive - which I find hard even thought I am a nurse and would fight to the end for patients it feels so much harder when for yourself!
I have done a lot of private testing in the last year. This was mainly because of GP not really being clued up on certain health issues. They have their guidelines to follow and some will not look outside the box. To be fair I suppose they are in a difficult situation. You can't get certain tests on the NHS, probably due to cost, hence going private.
The new guidelines on B12 deficiency are due out on the 6th March is last I heard, but it may well change. I have seen a copy of the recent Consultation, someone on here posted it and I can't remember who it was!! It is probably available for viewing somewhere on the internet but again PAS will no doubt know where to find it.
I have learned in the recent past that you have to be your own health advocate. If I had not taken control of my health issues, as in getting the right testing and seeing the right people , I don't know what would have happened to me. I am still in the process of sorting things out but in a much better place and more informed.
As for private testing, Thyroid UK have a list of where to get private tests for various things, might be worth checking that out.
I can see you have loads of great responses on here.
Your Vitamin D is low, your Active B12 is only a little away above bottom of reference range but not considered deficient I believe. I see your TSH level is just outside top of reference range. I think I spotted your are Folate deficient?? Any vitamin deficiency as far as I know will cause symptoms eventually.
I have had all this myself and have Autoimmune Thyroiditis. I am sure Thyroid UK forum gave you good advice. You are above reference range for Thyroid so your GP should be looking to test you again at some stage at the very least!!! I can only suggest getting privately tested for TSH, Free T3, Free T4 and thyroid antibodies. Sorry if you have already been advised that, so may be duplicating.
Unfortunately the NHS diagnosis and treatment of thyroid and vitamin issues in my experience is sadly lacking. GPs go by NICE guidelines which in my opinion are poor. They only test TSH which does not give sufficient picture of how the thyroid is working, again in my opinion. As for B12 you could get a private MMA test which might help to diagnose B12 deficiency if you have it. If you have members of your family with autoimmune disease I would ask GP to do the Autoimmune Antibody blood test because of your family history.
It is terrible we have to go to such lengths to get a diagnosis and treatment but it is a case of having to!!!!
On NHS page on pain relief in labour, there is no mention that nitrous oxide inactivates B12 in the body. It says that there are no harmful effects for mother and baby.
In my desperation in my 40s I went down the thyroid route , , ,even tried NDT but to no avail. . . . . Had good hopes but in no time I figured out it was making not difference. . . .
Some of your symptoms may appear similar or same a b12 problems but you have rather a lot of problems
If you are constantly exhausted B12 may hold a glimmer of hope and why not find a clinic that will give you cobalamin . . . . . . .There are even beauty clinics offering the service today although I think this is kinda daft and may eventually spoil the party for those who really need it. . . . . . It is not too expensive to try a few doses. . . . . . . Weight gain could be as a result of the exhaustion it certainly was with me anyhow
Other things. . . . . . Look up the symptoms for sinusitis and see what you think. . . . . Its another of those things that often goes undiagnosed often for many years. . . . . . I say this because of your neck and throat problems. . . . . . It also causes pressure around the nose eye region often without headaches. . . . . .. Sinusitis can be the infection of the sinuses on their own or caused by a sneaky tooth problem. .. . . In turn it can also cause a tooth or two to become tender. . . . . It often causes the Lymph's to be fighting on your behalf and that can make you very tired. . . . . .Those lympth's in turn can be very sore. .. . . It can also cause repeated chest infections that are seen as asthma or copd when the real culprit is post nasal drip gettin to the lungs. . . . Just a few thoughts based on my personal experiences
You are clearly having B12 deficiency symptoms secondary to your weak thyroid. As some others have pointed out, the vitamins need to be fixed before thyroid is fixed. From your tests, what you need is B12 and folate and perhaps some iron.
What I suggest is to start B12 supplementation immediately. Best is to take injections. If you are too scared to do it yourself, you can take orals. In my experience, cyanocobalamin orals work better than methyl ones but take time to kick-in (3-4 months for full effect, although you should start feeling better in a week or so). Regarding injections, you can take a weekly shot for a few weeks followed by a monthly shot till you feel normal (better still, take a shot when you feel the need for it).
Simultaneously, you should start a good B-complex that has at least 1000mcg of folate.
After a few months, when these things stabilise and you feel normal, you can try to introduce some levothyroxine. Once your thyroid is fixed, your vitamin and mineral absorption will improve gradually and after some time, you may not need any vitamin supplementation. (for me, it took about a year before I could stop some supplements).
I am seeing a different gp and I’m going to send the private test results and also demand a trail of vit b - if he says no I think I will go down the SI route.
I’ve been prescribed folic acid which I’ve started - I don’t know if it’s agreeing with me though - feel really more nauseous than normal!
I want to be tested again for h pylori and also just to let them know my vit d came back at 31nmol/l (took a private test) - I am planning to start vit D3 tablets today.
My active B12 came back at 41pmol/l (range is 37.5-188) so again it’s not the best result but “within range”
"I’ve been prescribed folic acid which I’ve started"
Are you and your GP aware that treating folate deficiency without treating a co-existing B12 deficiency could potentially lead to neurological problems in some people.
In someone with both B12 and Folate deficiencies, B12 treatment should be started first.
NHS link for B12 and Folate deficiency says
"This is because folic acid treatment can sometimes improve your symptoms so much that it masks an underlying vitamin B12 deficiency."
Your GP might say that it is okay to start folate treatment as your serum B12 level is within normal range. Your serum B12 is only just within normal range and you list some symptoms suggestive of B12 deficiency so I think it's worth talking to your local pharmacist about this as well as GP.
Unfortunately my GP was absolutely 100% adamant my b12 is fine. She would not even entertain when I said that it was only just and not optimal.
Yes I will speak to the pharmacist too - I’m seeing a different GP end of this month so 🤞🏻
I did get some advice from b12 group that sometimes taking the folic acid for a few months means b12 reduces enough to be clearly deficient and then the GP will treat.
I am a nurse myself - just the wrong kind as I’m a mental health nurse so this is really not my area. Just know not to trust the cut offs and what medical professionals say is not always correct!!
"my GP was absolutely 100% adamant my b12 is fine"
I've read research articles where people suffered SACD sub acute combined degeneration of the spinal cord due to B12 deficiency with serum B12 levels that were normal range.
Search online for "Turner SACD normal serum B12" which should show a research article about this.
I developed spinal symptoms with most serum B12 results well within normal range eg 300 - 500 ng/L.
B12 deficiency can have a massive effect on mental health. See articles below.
"I did get some advice from b12 group that sometimes taking the folic acid for a few months means b12 reduces enough to be clearly deficient and then the GP will treat."
I don't know about that but I do know that there may be risks associated with taking folic acid if a person also has an untreated B12 deficiency. This issue is discussed in "NICE CKS Anaemia - B12 and folate deficiency" and "BSH Cobalamin and Folate guidelines". I mentioned the issue out of concern.
Some GPs lack understanding of B12 deficiency and I suspect your GP is one of them.
See the articles I posted under the heading Wrong Ideas about B12 deficiency and also the Mayo Clinic article.
Have you had an Intrinsic Factor Antibody test (usual test for PA)?
It's possible to have a private IFA test in UK. There is a high street chain of chemists that offer an online testing service. Search online for "b12 test uk chemist".
About half of people with PA test negative or normal range on IFA test.
This diagnostic flowchart discusses diagnosis of PA and Antibody Negative PA
I tried to discuss this with my GP as lots of the women in my family have thyroid issues and PA. But she was having none of it!
I am not sure what to do - I have an appt on 27th but I’m not hopeful. I can write a letter to them which might make them more likely to listen to me on 27th.
Would you mention my active B12 or will that be more used as evidence in “within range”?
Correct. It should be 1000-2000mcg. I should have mentioned the amount in my original reply, but somehow missed. I have found that sublingual or oral does not make any difference but some brands work and some others don't. I have no idea why but it could be the other fillers they have, as absorption of B12 is impaired if taken with some other foods.
I'm rapidly moving to a position with regard to testing and levels and ranges that unless I am at least middle of any range then I'm deficient. That view is fast becoming my starting point. How much do we know about how these levels and ranges are arrived at by biochemists?
I’ve had some great insights from this group and also thyroid UK as to how they can be really connected. The advice seems to be definitely to address vitamin and minerals first of all - and I really hope it does help my thyroid!
In my experience, you have a lot of issues to correct…it’s chicken and egg as to what came first though!
1) Thyroid - your TSH level suggests hypothyroidism. It’s elevated and your body wants more hormones. Your FT4 level is very low in the range, most people feel well around half way through, you’re not getting enough. You haven’t had your FT3 tested (the active hormone) or autoimmune antibodies (there are 2) and thyroid issues can be genetic. Join Thyroid UK health unlocked forum for more info on this. Treatment on NHS is wholly inadequate in terms of when they’ll treat you and they only prescribe T4/Liothyronine which some people don’t do well on. Privately you can be treated with other hormones eg NDT, T3. Carpel tunnel can also be a thyroid issue. Google that relationship. Suggest you do a finger prick at home thyroid test (see Thyroid UK website for further info), very easy to do. Some also include active B12. Low vit/minerals can also strain the thyroid function.
2) B12, folate and ferritin - all far too low. Low thyroid hormones and low B12 will cause low stomach acid. This will reduce your ability to digest and absorb vits/minerals etc. History of h pylori may also have impacted this. Supplementing with B12 prior to testing for PA or functional deficiency is not advised however. Active B12 test may also provide some further info, NHS only test total. Once you’ve completed further B12 investigation (I find website B12info.com very helpful) then go down the route of treating this. You can begin supplementation with folate (go for a methyfolate L-5-MTHF as more easily absorbed). Also iron (take away from cows milk or high calcium and other supplements, take with VitC to aid absorption). Solgar Easy Iron is quite tolerable but some import heme iron supplements from companies like Three Arrows as they are more easily absorbed/used. As with all supplements, make one change at a time, observe any changes and then add next supplement. Too many changes in one go can cause confusion. For thyroid health, also need high levels of selenium. Once B12 assessed further or you’re on B12, you will need a general b-complex as they work together.
I hope this is helpful! Thyroid forums usually say start with optimising vits/minerals then thyroid. I’m afraid it will be a long process but you’ll get there! Just go low and slow otherwise you may end up backtracking! Let me know if you want any more help!
My B12 initially was "normal" because it was in range, looking back I had been reporting symptoms which could have been due to B12 deficiency, but GP's have no idea, if it's in range, it's normal, which is not the case.
I had awful pain , tingling, numbness for few years when Gp eventually referred me for a nerve conduction test. That showed med/severe compression/damage to right arm/wrist and severe on left arm/wrist. Got booked into a private hospital (under NHS) for carpal tunnel surgery . Have had both hands "fixed" not pleasant surgery but not worst. It hasn't completely cured my problem and some numbness and pain has returned so I do wonder if it was peripheral neuropathy due to B12 deficiency all along. Hope you get some help. My surgery gave me folic acid, vit D, for a few months and refused to do anything else.
Yes , I 'm aware, but GP's only give generic folic acid. Even when the px the don't follow guidelines they do the minimum, and don't like to repeat to check efficacy yet when it's B12 they insist on testing levels even when guidelines clearly say retesting is not recommended
Hello KRex, I see you have already received a lot of helpful information from fellow members on this PAS website but I would like to comment upon your thyroid situation as a fellow sufferer for many years. My comments may be a bit out of date but came to me from a very reliable source and believe they are still accurate.
Your TSH is extremely high and indicates you are struggling with insufficient thyroxine. I was told that the problem with TSH reference ranges are around the fact that a considerable proportion of the general public have an undiagnosed lack of thyroxine problem but are still included in the formation of the reference range. A good TSH result for a healthy person is 1 and remember that ft4 has to be converted into the usable form of ft3 in order for your body to use it. I have this exact difficulty and need my ft4 to be high up on that reference range.
In my experience most GPs do not understand thyroid blood tests, and I have even seen Consultant Endocrinologists who are not clear about this either. When my TSH was 3.4 I was extremely ill indeed but could not manage to get reliable assistance for years. The doctor needs to treat your symptoms not the blood test results. This applies to any thyroid problem as much as it does to a B12D/Pernicious Anaemia. You will probably have realised that the latter road to recovery can be very lengthy and I think I would start by pushing for your appropriate thyroid treatment initially. I am sure that with so many symptoms you feel completely overwhelmed and don't know where to start. I expect the "advice from the thyroid people" is somewhat similar to mine and with both PA and hypothyroidism myself I would start with your thyroid problem first. Best wishes with your recovery.
It is so condescending for doctors to blame our health problems on psychological issues. That is part of what delayed my getting a PA diagnosis. Your B12 is low. Every other day shots of B12 would be a good idea to see if they help your fatigue and numbness. But it also sounds like you have some other things going on. Please persist until you figure things out instead of just blaming this on emotional troubles. I hope you can find a doctor who cares enough to help you find out what is going on. Birth control pills helped me with heavy and prolonged periods. It could be endometriosis. It also appears that you have some thyroid problems and that can make you tired as well. The B12 will do no harm even if it is not helpful and it might help a lot.
For your period woes, it would be really nice to see a gynecologist. And hopefully you would then at least have one problem being addressed by someone who is not going to say it is all in your head. I don't know if they can give B12 shots, but it is worth a try.
NICE (National Institute of Health and Care Excellence) publish some guidance that mentions H pylori.
Search online for "NICE guideline H Pylori" if interested.
If you have time, check to see if your ICB (Integrated Care Board) in England or Health Board in Wales/Scotland has its own guideline for treating H Pylori.
There are some research articles online that suggest a possible association between H pylori infection and development of pernicious anaemia.
Found lots of NHS documents when I searched for "nhs H pylori treatment algorithm" or "nhs H pylori eradication".
"really heavy and prolonged periods"
My problems with periods disappeared after I started B12 treatment.
PA and coeliac disease can run in families so I hope your and your cousin's blood relatives are alert to the possibility. More about this on PAS website.
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