I’m back from the doctors. I was in there for thirty minutes but he has been quite clear there’s nothing wrong with me 🤔
He said he thinks I could have POTS as my heart rate increased when I stood up.
He has told me to continue with the folic acid and vitamin d and told me to buy some high strength vitamin b12 1000mg and take floradix every other day.
I did all I could to explain how terrible I was feeling and all the guidelines etc about ferritin lower than 30 and it all but to no avail.
He said we would retest bloods in 3 months.
So can anyone recommend a good b12 oral supplement and an iron supplement that will help me?
i feel I have to do this for 3 months. Maybe I will feel better for just this at the end?
I explained my mum had PA and Iron deficiency but he was quite adamant I’m fine and most people have low folate and vit d this time of year.
Thank you for your help in advance
😕
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Kiwi47
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hello, Nature Provides Subliminal drops available direct from their website or Amazon.
However despite your gp saying there is nothing wrong, you are feeling terrible because something is definitely wrong.
So, what are your symptoms. P. A. can run in families. You should not have low folate or vitamin D, never mind the time of year. Im sorry I do not know much about ferritin and low iron, maybe others can comment
Also what are the results of blood tests: results and ranges.
Taking the supplements your gp wants you to do will affect the blood tests he proposes doing in 3 months. They will possibly, probably be high.
Dizziness which has got much worse in the last month, tinnitus I’ve had for years, and exhaustion which again has got much worse…I’ve just adapted to it so try to nap and have four children under 11 so assumed I’m just tied! Tingling hands and scalp is intermittent and v low mood. I’ve also lost 3kilos and my shoulders and upper body feels much weaker.
Mum died 3 months ago and the doctor did ask if anything else had changed for me recently but I couldn’t quite get the words out to tell him and should have because it was all quite traumatic. I should have said. Maybe this is all a reaction to her illness and death?
I guess if it is, time will tell and I will start to feel better on supplements and as time allows me to process the grief more?
Also I forgot to add that the IF test was negative (I told him that isn’t particularly helpful) and one doctor tested for celiac too which was negative.
I explained all about the Andrew klein levels but he was very convincing and was quite put out by me I think. I really felt like some kind of weird hypochondriac. I even said to him ‘I don’t want to be sat here!! I would much rather be at work or doing other things!’ And he just looked at me.
Get a new Doctor. - I put up with all the dismissive disbelief from mine for several years and it harmed me. I have a new Dr and the relief is profound, he listens and responds appropriately.
Sorry I m now feeling ill and brain fog atm. I hope others will comment. If not please re post, for our exchange appears as separate replies.
You are right, your b12 serum reading should be at least 500 or more , unfortunately most ranges are now set low.
Your B12 should not be dropping, it's dropped over past 11 months.
Your symptoms and weight loss say B12 deficiency. Or P.A. to me., especially if you have good B12 diet of meat, dairy.
I am so sorry to hear of your mother's passing. From experience loss does affect you. Illness, viruses, over exertion reportedly all negativity impact B12.
Do you have other autoimmune illnesses.
I think You need injectable loading doses with folic acid, and vitamin D, possibly Iron. Another gp at your practice may be more helpful, informed and give you what you need
I have heard several experts that have major criticisms of Folic Acid as a supplement - it is a completely unnatural substance that is not processed easily by your body. If you have several deficiencies, it is even more likely that you may have trouble absorbing things so I would recommend you get high quality supplements, perhaps in a methylated form, and then you might get some results.
You could find a good Naturopath rather than rely on the medical system - it really only deals with symptom management and then only when you are bad enough.
POTS has been associated with post Covid vaccine effects in some people. So has B12 depletion.
There is no problem taking folic acid. It is perfectly safe. This lie has been spread by American evangelicals who believe God does not want us to eat foods fortified with folate. There are no reliable studies that show folic acid is bad for us at all. Indeed we need to take it if we are unable to eat enough dark green vegetable and we really do need to eat a lot. I take 5mg every other day and at times increase it to one a day with no side effects at all. If I are none my B12 symptoms increase.
Sure, some people do okay with synthetic folic acid. It’s widely available and inexpensive so that’s a plus. However, most do better with natural folate from food or higher quality whole-food supplements. It makes a huge difference for those with MTHFR/methylation issues. When food is fortified, they’re using only the synthetic folic acid (at least in the US). I personally get no benefit from folic acid and need natural folate. They’re not the same.
Folic acid is not the same as Folate. What you have written shows you do not understand the difference. It's fine if Folic acid suits you, but it may be a lot less helpful to others and if they don't understand the difference they may never realise why.
Food is not fortified with Folate - it's fortified with Folic acid. We might end up with some Folate from it after something like 400 more time processing in our bodies. Apparently Folic acid does suit some people but in general there are better choices.
"It’s important to remember that folic acid is not bioavailable, unlike folate, methylfolate, and folinic acid.† It may not metabolize properly and can build up in your blood. This build-up can cause your homocysteine levels to rise, and you may not feel too well. Folic acid can also mask a vitamin B12 deficiency, and you may become anemic." seekinghealth.com/blogs/edu...
Folate occurs in green vegetables like broccoli , French beans etc. Breakfast cereals are fortified with folic acid to ensure people get enough folate in their diet particularly women of child bearing age as it is essential to ensure the spinal cord develops properly in embryos. Folic acid is generally well tolerated although it often encourages gases in the digestive system with resulting flatulence. There are just 4 stages in the processing of folic acid in the body to give us folate - First, folic acid is reduced to dihydrofolate (DHF) and then tetrahydrofolate (THF) by dihydrofolate reductase (DHFR), which is converted to the bioactive form 5-MTHF by methylenetetrahydrofolate reductase (MTHFR).
My dizziness is so bad now I’m struggling to go out, and have to look at the floor as if I look straight ahead I feel dizzy.
Is this even a symptom? The tinnitus is very bad too now and exhaustion.
I have ordered some lamberts high strength b12 1000 and a 20mg iron I will take every other day like Andrew Klein suggests then will also take the folic acid and the loading vitamin d once a week.
hopefully in a month I will see an improvement. Gosh it’s all very hard going isn’t it.
I also now have a huge guilt as I have so many memories of my mum just not being able to do much at all and I know how she felt now to an extent.
Hi, many sympathies on the loss of your mum, and please don't feel guilty. We all do what we can with the information that we have and what we are told by doctors. From my own family's experience, I know that our B12 drops hard at times of stress and illness. All of the older generations who managed to get a PA diagnosis got that diagnosis after crashing following the illness and/or death of a spouse or close family member. So, given that you were already low and hugely symptomatic, it is likely that your increased symptoms are a result of coping with your loss and grief. For me, methylfolate in small quantities resolved the dizziness, vertigo, and improved balance, which folic didn't touch. You might also find a spray or sublingual B12 more effective than a straight tablet if you have to go that route, but injections are a different beast altogether. Would a video consultation with Dr K be possible, if you can't get to see him in person? Best wishes
Please don’t feel guilty about your mum. My mum had PA and it’s only now that I have had my own issues with B12 dropping that I understand how the symptoms she had were all B12 related. Her treatment of 12 weekly injections was a starvation diet. The medical profession still don’t seem to have much knowledge about it. I would certainly have neurological issues with your levels. I self inject weekly after not being able to persuade the GP to give me injections more than 10 weekly. Please look after yourself xx. Lots of help here and I also found the Pernicios Anaemia/ B12 Deficiency support group on Facebook invaluable. There are templates for writing to GPs etc provided and a wealth of information. Also recommend the Pernicious Anaemia Society..
what level was your ferritin? If it’s below 30 then you are low in iron. I would speak to another gp immediately. What were your b12 and other results?
I have been given loading doses of vit d and folic acid but he was INSISTENT that my b12 wasn’t low neither was my ferritin.
He looked at me like a piece of dirt tbh. He is the third doc I’ve now seen/spoken to. The best was the first who asked what I wanted him to do and I said be referred to a haematologist which he’s done.
So I’ve bought these supplements and will start them?
Have you had a complete blood count done? If not you need this before you supplement. This can determine megloblastic anemia with your folate being ridiculously deficient.
As an example, I do my tests privately with a company called thriva. A GP also reviews all the results. My folate was 24 and he said he wasn’t happy with that level, 30 is optimal.
Total B12 should be 300 and above. 200-300 is in the low but not clinically deficient range. However it’s still low and not a good normal range. I would not supplement this until you get an active b12 blood test which shows the level in your actual cells. If you supplement it will be inaccurate for around 6 months.
A normal vitamin d level is 50-250 with 70-120 being optimal.
Normal ferritin is 30-200.
I’m not sure where you are based but you need to get a copy of the blood test results for yourself. If you are in the UK you can get them through the online portal. You can then take them to a new GP to save time and to also keep for yourself to have as something to compare to after supplementation or if you decide to get tested privately. Either way you need a copy for your own records.
Supplementation for iron should be with ferrous fumarate. I would take this with vitamin c to increase absorption and avoid caffeine.
Folate should be methyl folate- cytoplan do a good one
I would take 4000IU vitamin D3 a day throughout winter months. I can recommend the brand bionutrica.
Once you have your active b12 results and they are low- supplement with 5000ug SUBLINGUAL b12 daily. I would highly reccomend cytoplan sublingual b12 for this. Take this for a month then 1000ug a day for as long as you feel you need. B12 is water soluble so you just excrete what you don’t need.
Hi, just a quick note that active B12 test does not show B12 in cells - there is no test which can do that. The active test shows B12 bound to transcobalamin which is *available for use*, not actually being used. Any of the many tests can be useful in showing a deficiency, but the whole lot can be 'normal' and there still be a treatable deficiency.
So sorry for everything you're experiencing. It sounds like your symptoms are escalating so def book an emergency GP appointment and try to see someone else. This isn't a wait and see situation if you're getting worse! Just wondering if you might also have labyrinthitis as that can cause severe dizziness and tinnitus as well (on top of your other issues not instead of).
Keep booking with a different GP until you get someone who helps and listens to you. Don't accept getting fobbed off (hard to do when you feel so ill I know). All you can do is keep pushing for answers unfortunately xx
you’re all so kind thanks for the advice and kindness.
I think I may look for a new practice but there’s no guarantee of finding anyone as they all seem to say the same as my results aren’t lower.
What is interesting is on my blood results from the lab it even says ‘consider megoblastic anaemia’.
My white blood cells and lymphocytes are also below levels but he was absolutely not bothered by this at all.
He was so annoyed about the whole thing, I knew I would be upset if I told him about my mum so when he asked if anything happened in the last few months I just said no. I think the grief has triggered it.
I think an appointment with dr k may be good I will look into this too.
Yes I am uk based. I just like kiwis! As in the fruit, ans the people of course! X
Hi please get in touch with Dr K. He is lovely & will listen to everything you tell him. I went through the same as you with rude arrogant gps & was a relief to be listened to. Apparently there is no test that is 100% with diagnosing PA & best to go by the symptoms. My gps tested my intrinsic factor 3 times & came back negative & was told nothing wrong even though my health was deteriorating. It began to affect my mental health & that’s when I decided to go to see Dr K. I still have issues 3 years down the line but nowhere as bad as when under those gps. You should not suffer like you are so please get sorted urgently. All the best to you X
Dear kiwi. Please don’t feel guilty you’ve not mentioned the grief about your mum’s dead to the GP. Quite frankly, I don’t think it would have made any difference. He’s been very dismissive to you and adding a psychological stressor, would have likely just made him put all your symptoms on that. Of course, your mum’s death will have had a terrible impact on you, but it doesn’t mean there’s nothing wrong with you and it doesn’t mean a doctor shouldn’t be doing anything for you.
They’ve told me for years it was normal to be tired as a mum of young kids. Now they’re a bit older and I even had to stop work, they’ve got nothing to blame it on psychology , so now they’ve started with could it be early menopause. 🙄
It is soooo awful to be dismissed by a doctor. It makes you feel like utter crap. But it sounds like you’ve explained yourself very clearly. It’s really hard. So well done!
Take someone with you next time if you can. Try a new doctor ( yet again)
Keep asking for advice on the forum. You might need to take things in your own hands. But forum will be here to help you. Write down data if how you feel, to take to your doctor next time. Or at least it will give you information yourself.
Take a good quality vitamin D. Nature provides B12 drops. Add B complex which has folate ( not folic acid). But leave some weeks in between adding a new supplement so you know how it makes you feel or if you’d experience any side effects.
You also need to look into iron, but I’m not the right person to explain that to you.
Hello Kiwi47, I see that you mentioned VitD is undetectable. If I’m right, this needs correcting, as low VitD can make you feel terrible. I was given something awful by GP to up my VitD, so had to order my own VitD3 with VitK2. I hope you can find a decent doctor to help you, as your present one certainly isn’t x
The supplements most GPs give are to be taken weekly and may have lots of fillers. D3 should be taken daily. 5,000 units of D3 along with 100mcg of K2 daily the first week. I order capsules containing D3 and K2 as it’s easier. The second week, increase the D3 to 10,000 units. Best to take D3 and K2 at the end of a meal (preferably breakfast) that contains at least 14 grams of healthy fats. I’ve found joining a VitD group on Facebook has been really good. Hope this is helpful x
Great! I was prescribed 40000 per week. ( but my levels were higher than yours to start off with). That still wasn’t enough for me so I had to continue with my own supplements after. And you’ll likely need to ask for more from GP or get your own.
This old post from the very knowledgeable SeasideSusie has a lot of helpful information in it on Vit D. Including a link to a calculator of how much you should be taking to top up your levels to an optimal level. healthunlocked.com/thyroidu...
I’m so sorry to hear about the loss of your mum and your experience with some horrible doctors.
My doctor treated me like I was a hypochondriac too. I’m now paying for private blood tests (Monitor Your Health full health screen) and taking supplements in line with Dr K’s recommendations (as seen on video). I felt I had no other option with the worry that my nerve damage might become permanent if not treated quickly.
My total B12 was 174 last year. Now my active B12 is > 300. For the last month, I’ve been self injecting subcutaneously EOD with hydrocobalamin and taking Royal Oak sublingual methylcobalamin 1000mg EOD as well. I think I’ve now got reversing out symptoms with increased nerve and joint pain in my legs but I hope things will get better in time.
My folate was 14.4 last year and it’s now 19.8. I’ve been taking Boots Active Folate (quatrefolic based) EOD for the last month.
My ferritin was 62 last year and it’s now 81. I took Boots 14mg EOD for 3 weeks.
My vitamin D was 67 last year and it’s now 78. I take 10ug a day as well as Calcichew D3 500mg (calcium & vitamin D) and vitamin K2 (Holland & Barrett 50ug).
I understand that Dr K and others suggest that you need to treat vitamin B12 deficiency before treating a folic acid deficiency. Dr David Morris (on the Cytoplan video) suggests that a total B12 of less than 500 probably needs attention. (vimeo.com/891099138/4150efa06b
I think so! I cook every day at home for us all and always add salt when cooking and have never not added it so I don’t imagine my salt would be low.
My dizzy spells have massively decreased although I do still have them occasionally. No pins and needles now either. Very bad tinnitus still and fatigue. Only 3 weeks or so in to supplements but they seem to be helping a bit.
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B12 help
Intrinsic factor blood test results...
PLEASE HELP WITH SUSPECTED B12 FUNCTIONAL DEFICIENCY
Help needed please
