Hi I have Hypothyroidism and they have advised me to ask for your help . I will try & cut a long story short!! . Since 2018 I have had low Ferritin results quite often and have taken Ferrous fummerate for 6 months each time and then promptly ignored as problem solved . In December I had a blood test done which showed
Ferritin 9 ug/L 13-150
Serum vitamin B12 212 pmol/L 145-569
Serum folate 15.7 nmol/L. 8-8 - 60.8
Haemoglobin 108 g/L. 120-150
These were the ones flagged as abnormal although platelet count was over the top of the range & Haematocrit was under the bottom range
Since then there have been 3 sets of replacement Doctor practices, I have been referred to haematology twice since then by a nurse and a doctor and both times the referral was sent back informing the doctors to investigate my low ferritin and iron. Nobody has ordered an iron panel and every time I tried to mention the symptoms I was having they brushed them away by saying we are referring you to haematology. I went to thyroid uk with these problems as I have been on 50 mg levothyroxine ever since I became hypothyroid 12 years ago and they advised me to up my dosage as it was a starter dose . That was only done when I had private blood tests done and I think the GP thought she’d better try something as haematology had sent the referral back . She left 2 weeks later . The tests I had done at Medichecks are below
B12 active 47-8
Folate 7-13
Ferritin 23.8
Transferrin 18.5
Vitamin D3 42 nmol/l
I checked for symptoms of B12 deficiency and those were
Pain in feet , weakness in legs , Nighttime Cramping in my feet every night , drives me nuts. Sore dry eyes , blurred vision I can’t look up at the Sun at all . My Sight test has gone from my Reading vision which had slightly decreased over the Years but I used to get glasses from the Chemist as vision was exactly the same in each eye to Bi focals.
Extreme fatigue I have fallen asleep talking to people! , disturbed sleep and anaemia.
The thing that’s bothering me the most is not being able to remember names of People I have known for years and Film titles etc forgetful as well. I also have Skin pigmentation on my face , I am not and have never been a Sun Worshipper on the Contrary, as I have very fair Freckled skin I keep out of the Sun . I have co existing problems, hypothyroidism, I was treated for H pylori which was spotted on an endoscopy 5 years ago plus iron deficiency etc . I have just had an intrinsic factor test done after speaking to another doctor, I tried to tell him about my Symptoms and my suspicions of PA & B12 he was very dismissive said he was happy to test for PA but felt that here in Britain we overprescibe B12 injections as opposed to the rest of Europe and he was giving me a prescription for Cyanocobalamin which would sort me out ??
The intrinsic factor came back Negative and the only other thing he tested was TSH for thyroid also normal. That’s when people on Thyroid UK advised me to see whether anyone can advise me on here . Told you it was a long post hope I didn’t lose anyone halfway through…
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Spoticus
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Spoticus, did people on the TUK forum advise that a lot of people being treated with Levo actually find that they don't feel okay unless TSH is around 1 - whereas the normal range goes much higher. Has your dose actually been changed?Also, do you know if your hypothyroidism is auto-immune or not - if it is then that would increase the likelihood of developing PA.
There is such a huge overlap between the symptoms of hypothyroidism and B12 and your B12 results are ambiguous - if you had earlier results that were much higher (20% +) that would indicated an absorption problem but as a single point test both serum and active B12 are really difficult to interpret. The active B12 above would indicate that your serum B12 is still around 200 so not indicative of a B12 absorption problem.
(Active B12 is generally around 20% of serum B12.)
I am not saying that PA isn't a possibility just that it doesn't look like a prime candidate to me (though also true that I am not a medic). People can be deficient at just about any point in the normal range for B12 but it would be the dropping levels that would indicate an absorption problem, and without that then it looks as if you are still able to regulate B12 levels using stores in your liver.
I have both PA and hashimotos. I'd been feeling off for 6 months and when my TSH results came back recently they were 2.6 - didn't ring alarm bells with my GP but did with me. She looked back over my records and previous results had been around 1 so she tolerated my decision to modify and up my levo dose slightly and it really has made a difference.
If there is still a chance that your thyroid doses aren't correct I would suggest pursuing that and getting doses right and if you still feel grotty start looking for something else - its easier to deal with problems one at a time than it is to try modifying everything all at once.
Thyroid problems can affect gut transfer and that can affect iron levels but please be aware that ferritin is an indirect indicator of iron status and although it is generally a good one there are instances of iron toxicity from using it as the only indicator.
Sorry but the reality is that there isn't a clear answer and that is the situation that your GP will also be struggling with.
Thanks for your reply, I must admit I’ve been quite ignorant where my thyroid was concerned. Since it was diagnosed I sort of assumed the doctor knew what she was doing and there was nothing to worry about. It’s amazing what you can get used to and shrug things off . I have Copd and it became a problem during covid so I was getting tips etc on there when someone on that site mentioned the problems they had with hypothyroidism . That’s when i popped up a post about my ferritin and I did subsequent blood tests expecting that would be the reason for my problems . I don’t know whether I have Hashimotos and I haven’t mentioned the problems I’ve got ,except for on here as they were on symptoms that were pointed out on the B12 deficiency list . I was definitely undermedicated on levothyroxine and I am now on 75mg so will retest in another week for that . It was only when I posted my results on thyroid Uk that PA or B12 was mentioned and I was advised to post here . My New surgery is using the NHS app and I have found blood tests going back 4 years with B12 & folate tests . July 2018 Serum B12 173 pg/mL. 180-914
“. Serum folate 7.1 ng/mL. 3.1 - 20.0
Ferritin. 9 ug/L. 13-150
Doctors comments mild iron deficiency anaemia
November 2018 Serum B12 226 pg/mL
Folate 9.0 ng/mL
Ferritin 31 ug/L
I had been taking ferrous fummerate 210 mg 3 times a day then .
January 2019 B12 229 pg/mL 180 - 914
Folate 10.1 ng/ mL 3.1-20.0
August 2020 Anaemia
September 2020 B12 258 pmol/ L 145-569
Folate. 23.6 nmol/ L 8.8-60.8
Ferritin 7ug/L 13-150
Then January 2021 iron levels raised and ferritin 24 these were not mentioned to me I’ve just found them and an abnormal test in November low ferritin then the tests in my original post . Going through these tests I have found TSH Tests ranging over those years lowest 2.4 to around 4 although one test was 17 ! That wasn’t flagged up either. I shall keep on top of the thyroid now and hope that takes away these problems and go from there .
Your B12 levels look quite constant (serum B12 levels are only accurate to 20% and the variation in the results above is within that range which does suggest that PA isn't an issue. Itge looks like you naturally sit around the bottom of the normal range ... and the nature of a 'normal range' means there will be some people who are okay outside the ranFolate is responsive to dietary intake so varies more than B12 though your results look as if they are in range.
I think GPs have become overly reliant on test results over the years and forget to ask patients how they are actually feeling. TSH levels will vary - depending on time of day etc so doing them around the same time in the day helps with assessing what is going on.
Unfortunately Levo sticks around in your system for a long time which means that changes get done in small increments over a long period of time to avoid being in a situation where you have too much (which I'm told feels really awful) and then having to wait for it to clear. There are some who think the regime is a bit too cautious and it isn't uncommon for people to be left feeling awful on initial doses because results come back in normal range but nobody has bothered to ask the patient how they feel. Simplistically there is a formula for how much levo a person should need based on their weight (but don't ask me to trot it out for you ) and as we are all individuals there will be people who will need slightly different doses.
I can safely say I have never been overmedicated on levo and also any time I have mentioned other problems they have definitely not been taken into consideration. Which is probably why I thought it’s nothing to worry about stop moaning . Trouble is my old Doctor would probably have listened to me now as she knew that . The attitude from the New doctors are really dismissive and you never speak to the same one twice. Just when you don’t have the energy for a battle and are worried about looking like a hypochondriac. I will have to be careful as they wouldn’t have given me that increase, only managed it because she didn’t know what to do next and I told her it was worth a try . It’s all a bit grim because I can safely say I have never felt so rough and exhausted..
I was started on 25mcg and was positively suicidal on that - went up to 50mcg unilaterally and then most of my increases have been because I've taken things into my own hands and been careful. In the past the condition was managed on symptoms rather than blood tests but the GPs that knew about listening to symptoms have more or less all retired now - certainly before I started to need treatment. I do find that I need to drop dose a little in the summer if we have a heat wave otherwise I'm totally dead so I've always resisted any suggestion that I should just have 1x100mcg and continue to take multiples of 25mcg tablets - GPs aware and they tolerate that.Sorry that you have felt so dismissed and agree about the frustrations of never really seeing the same GP two times in a row ... that's if you see one - these days it all seems to be done on the phone.
Not a medic but have read, those with Hashimoto’s Thyroid disease are 40/50% more likely to develop B12 deficiency and vice versa.
I have both and, from own experience, although some symptoms overlap, the extreme fatigue in B12 was much worse and found skin pigmentation, pain in feet, proprioception, ear and eye problems, etc more a feature of PA/B12 def.
With Hashimoto’s, even with fatigue, feeling cold and constipated, I was still able to function at work, but B12 left me struggling to stay awake during the day and with more obvious neuro and psychological symptoms, sometimes bordering on paranoia, wanting to be alone and struggling to find words.
I was only heard and offered I.F. test (only 40/50% accurate) after writing to the surgery outlining symptoms, medical history, BMJ Research document, and sending Dr J. Chandy’s book, “ B12 Deficiency in Clinical Practice”,
It is unusual to be offered adequate treatment nowadays to properly heal, so I chose instead to self inject. Four/five years on, I finally feel more my old self - the sooner you start, the sooner you’ll stop deteriorating and begin to feel normal 🤗.
Good luck finding answers and good treatment, Spoticus.
Hi Polaris that sounds very similar to me , i found myself struggling to stay awake at work my hearing has deteriorated and now have hearing aids . Didn’t realise how bad it was until people started wearing masks and I realised I’d been kind off lip reading, my Children found that really amusing. I have actually got a face to face appointment on Wednesday as they have done the IF test and think I must be ok . Sadly I’m not expecting anything but I’ve put a few moreB12 test results on Gambits reply and I will also make sure I’m getting the medication for hypothyroidism and go from there , try and find out whether it’s auto immune. Thanks for your help.
“Didn’t realise how bad it was until people started wearing masks and I realised I’d been kind off lip reading” !
I too remember telling family that I’d discovered this 🤭 and wondered how long I’d been doing it - years…….
If it’s any consolation Spoticus, after bouts of tinnitus, infection and horrible deafness that I’d never ever had before the last few years, I cannot quite believe that my hearing has come back more acute than ever, as am now quite an old lady……..
Good luck with appointment on Wednesday. I hope you get some clarity with good treatment🤞🤞
I’m so glad you’re feeling better, luckily I haven’t got tinnitus that’s horrible my Husband suffers with that . So would you say the injections have done that for you and you sourced them yourself because I’m not really expecting much from the appointment but you never know?? .
I stand corrected if I’ve misunderstood Spoticus and Gambit but, after reading past test results (MCV over range!), apart from the fact that thyroid connection and neurological symptoms are more relevant, as well as to be on the safe side, I’d be even more inclined to ask for treatment with, “injections e.o.d. until no further improvement”, to prevent damage - as per UKNEQAS and BMJ research document summary (GP will be able to gain full access).
But, in any case, both state symptoms are more important and, if I’m not mistaken, serum tests show you were v. low 4 years ago ?!
You cannot overdose.
Lots of advice on the forum enabling purchase of B12 and self injection - as back up if necessary. 🤞🤞
There's clearly something going on here. If you start off iron deficient, take ferrous fumarate for a while and it goes away, but then over time, it comes back then you're clearly losing more iron than you're taking on board. Iron deficiency is a symptom of something else, and that 'something else' needs attention. Otherwise it's simply like bailing out a leaky boat rather than fixing the hole in the hull. The over-range platelet count is a clue. The haematocrit simply reflects the same as the haemoglobin; they go up and down together. You don't mention what your MCV is/was, or your RDW. They can be quite helpful.
Hi Flipper TD yes it’s been up and down for over 4 years now and I think they would have carried on ignoring it . Because of Covid you could only see Nurses for blood etc and she was the one who referred me to haematology unfortunately they sent it back telling the doctors to investigate so back to Square one . My MCV in December was 87.3 fL 83.0- 101.0 but I cannot see any test for RDW . There is MC hb. Conc 314 g/L. 315- 345 Lymphocyte 0.98 10” 9/L 1.00-3.00
These are the ones that I can see are out of the range are they any help ?
A referral to a Haematology Clinic would be my hope, as once you're 'in the system' you'd be more likely to find folks who understood your needs. A clinic referral might lead to tests that aren't readily available via the GP.
"In the presence of discordance between the test result and strong clinical features of deficiency, treatment should not be delayed to avoid neurological impairment"
Diagnostic flowchart from BSH Cobalamin and Folate Guidelines which mentions Antibody Negative PA.
If you click on "project documents" then on "consultation comments and responses" it gives a good insight into current issues around diagnosis and treatment (over 40 pages of info).
Local B12 deficiency guidelines in UK
Each CCG (Clinical Commissioning Board/Health Board/NHS hospital trust in UK is likely to have its own local guidelines on treatment/diagnosis of B12 deficiency.
Worth tracking down the local guidelines for your area of UK and comparing the info in them with BNF, BSH and NICE CKS links.
Some local guidelines have been posted on forum so
1) try a search of forum posts using terms "local guidelines"
2) try an internet search using "name of CCG/Health Board B12 deficiency guidelines"
3) submit a FOI (Freedom of Information) request to CCG/Health board asking for link to or a copy of local B12 deficiency guidelines.
If you want to know why I urge UK forum members to track down their local guidelines, see blog post below.
Links to forum threads where I left detailed replies with lots of B12 deficiency info eg causes and symptoms, more UK B12 documents, B12 books, B12 websites and B12 articles and a few hints on dealing with unhelpful GPs.
Some links may have details that could be upsetting.
Thanks for all that information Sleepybunny , still writing bits down from the links you’ve shown me . I’ve no idea who I’m seeing tomorrow as apparently they cannot recruit Practice Doctors just a constant flow of locums . Here’s hoping I get someone who will listen!!
Might also be worth tracking down local guidelines on treatment for H Pylori infection.
When I searched online for articles about H Pylori, I came across a few that suggested an association between H pylori infection and development of PA (Pernicious Anaemia).
NICE CKS link mentions H Pylori and discusses when to retest for H pylori.
"he was giving me a prescription for Cyanocobalamin which would sort me out"
What strength was the cyanocobalamin?
Low dose cyanocobalamin 50mcg is prescribed for dietary deficiency in UK.
There are moves across UK to put more patients onto high dose oral cyanocobalamin tablets 1000mcg as an alternative to B12 injections.
This is often promoted as easier for patients but I think it's a cost cutting measure....B12 ampoules for injection are cheap (less than £2 per ampoule) but nurses' time to give injections isn't.
If you had neurological symptoms at start of treatment then my understanding is that you should be on B12 injections. See BNF hydroxocobalamin link in my other reply.
The evidence that oral b12 is as effective as IM (intra muscular) B12 injections is of low quality. In fact Cochrane review said some of the evidence was of very low quality.
There are some forum members who manage their condition with high dose oral. For me and others on forum, high dose oral was ineffective.
I'm not a scientist but I think a lot more research needs to be done before with large samples of patients before high dose oral B12 is rolled out as alternative to B12 injections across UK.
I think PAS may be involved in this type of research.
Link to Cochrane review of Oral B12 v B12 Injections
If you eat plenty of B12 rich foods eg meat, fish, shellfish, eggs, dairy and foods fortified with B12 then diet as a cause is less likely and it's more likely that there is an absorption issue in the gut.
If your GP think your B12 deficiency is caused by diet but you don't, worth writing out a typical weekly diet, food and drinks , to discuss with GP. You could highlight any B12 rich foods you've eaten.
My understanding of BSH Cobalamin and Folate guidelines is that severe dietary deficiency should be treated with B12 injections. See BSH link in my other reply.
Have you managed to find the local guidelines for your area on Management of B12 deficiency?
I always urge people to be careful with their privacy and not to reveal personal information that could identify them but if you don't mind people knowing where you are in UK, someone might be able to find the local guidelines for you.
Bear in mind that posts from HU can appear on other websites eg NHS.
To change post to private setting which means only people using the forum can see it....
Go to your first post and click on the More tab
Click on Edit tab to show original post
At bottom of post it says "Who can see my post", click on "Only community members" then "Post"
After I read your posts I did wonder if you were in Gloucestershire which has a poor reputation on this forum as to how B12 deficiency is managed. Their treatment algorithm seems to put majority of patients onto oral B12.
See blog post below about treatment in Gloucestershire.
If you were tested in past and got a negative result, check the guidelines below to see if GPs followed the recommended diagnostic process....some don't. Also check any local guidelines on coeliac disease.
NICE guidelines Coeliac Disease
( suggests that anyone with unexplained b12, folate or iron deficiency should be tested)
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
) and as we are all individuals there will be people who will need slightly different doses.
PA with iron deficiency
Could it not be PA/B12 deficiency?
Iron and B12 deficiency
LOW B12 is not always PA
Help with B12 and PA diagnosis? In UK
