Advice please with supplements

Diagnosed iron deficient in 2013, initially took 210mg ferrous fumarate 3 times a day but couldn't tolerate taking more than one. Went to the GP more than once about this problem and he told me to stop being noncompliant and making things up. Eventually ferritin got so low I needed an iron infusion in 2016. I am meant to be back on ferrous fumarate but only once a day but still can't tolerate taking even one tablet. Actively monitored every 3 months.

October 2017 FERRITIN 47 (30 - 400)

Diagnosed folate deficient in 2015, taking folic acid once a week.

October 2017 FOLATE 2.3 (2.5 - 19.5)

Diagnosed vitamin D deficient in 2012 and prescribed 800iu. Was told by a private nutritionist this wasn't enough and recommended I take 3000iu Better You sublingual spray. Follow up testing every 6 months. Have doubled the dosage to 6000iu since March 2015 because 3000iu still wasn't raising it. I don't go out in the sun because I get cold easily and I am sensitive to the sun.

June 2017 TOTAL 25 OH VITAMIN D 66.3 (50 - 75 VITAMIN D MAY BE SUBOPTIMAL, AND LONG-TERM MAY LEAD TO CLINICAL EFFECTS. ADVISE ON SAFE SUN EXPOSURE AND DIET. SUPPLEMENTATION MAY BE INDICATED)

Given B12 injections for low B12 symptoms, result before injection

June 2017 VITAMIN B12 285 (190 - 900)

I gave up taking these because my levels were not rising and my symptoms were not going away. Advice welcome thanks

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Mallyc Went to the GP more than once about this problem and he told me to stop being noncompliant and making things up

And what was your reply?

I am meant to be back on ferrous fumarate but only once a day but still can't tolerate taking even one tablet. Actively monitored every 3 months.

Who is monitoring you? GP or haematologist?

Here is the NICE Clinical Knowledge Summary for iron deficiency anaemia treatment (which will be very similar to your local area guidelines):

cks.nice.org.uk/anaemia-iro...

How should I treat iron deficiency anaemia?

•Address underlying causes as necessary (for example treat menorrhagia or stop nonsteroidal anti-inflammatory drugs, if possible).

•Treat with oral ferrous sulphate 200 mg tablets two or three times a day.

If ferrous sulphate is not tolerated, consider oral ferrous fumarate tablets or ferrous gluconate tablets.

◦Do not wait for investigations to be carried out before prescribing iron supplements.

•If dietary deficiency of iron is thought to be a contributory cause of iron deficiency anaemia, advise the person to maintain an adequate balanced intake of iron-rich foods (for example dark green vegetables, iron-fortified bread, meat, apricots, prunes, and raisins) and consider referral to a dietitian.

• Monitor the person to ensure that there is an adequate response to iron treatment.

So if you've not been referred to a haematologist, ask to see one so that you can discuss your problem with taking ferrous fumarate. The haematologist should be able to find you an alternative. You cannot live your live with iron deficiency anaemia.

Each iron tablet should be taken with 1000mg Vitamin C to aid absorption and help prevent constipaton. Always take iron 4 hours away from thyroid meds and two hours away from other medication and supplements as it will affect absorption.

October 2017 FERRITIN 47 (30 - 400)

For thyroid hormone to work (that's our own as well as replacement hormone) ferritin needs to be at least 70, preferably half way through range. As you can't tolerate iron tablets, you can help raise your level by eating liver regularly, maximum 200g per week due to it's high Vit A content, and including lots of iron rich foods in your diet apjcn.nhri.org.tw/server/in...

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October 2017 FOLATE 2.3 (2.5 - 19.5)

Diagnosed folate deficient in 2015, taking folic acid once a week.

Why is your folic acid only once a week? It's normally daily.

June 2017 VITAMIN B12 285 (190 - 900)

Given B12 injections for low B12 symptoms, result before injection I gave up taking these because my levels were not rising and my symptoms were not going away.

How long did you give it? Did you have 6 x loading doses over 2 weeks? Was this followed by 3 monthly injections? If you only started the injections in June you can only have had the loading injections and possibly 1 x 3 monthly injection. You have not given it enough time.

You seriously need to go and post all this information on the Pernicious Anaemia Society forum for further advice, they are the experts and will be able to guide you healthunlocked.com/pasoc Give them this information about folate and B12, list your symptoms, also give the information about ferritin and iron deficiency.

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June 2017 TOTAL 25 OH VITAMIN D 66.3 Diagnosed vitamin D deficient in 2012 and prescribed 800iu. Was told by a private nutritionist this wasn't enough and recommended I take 3000iu Better You sublingual spray. Follow up testing every 6 months. Have doubled the dosage to 6000iu since March 2015 because 3000iu still wasn't raising it

Well, something is working here, albeit at a snail's pace. And that is because the sublingual spray is being absorbed because it's bypassing the stomach. You should continue, you could even raise your dose. The recommended level is 100-150nmol/L according to the Vit D Council.

There are important cofactors needed when taking D3

vitamindcouncil.org/about-v...

D3 aids absorption of calcium from food and K2-MK7 directs the calcium to bones and teeth where it is needed and away from arteries and soft tissues where it can be deposited and cause problems.

D3 and K2 are fat soluble so should be taken with the fattiest meal of the day, D3 four hours away from thyroid meds.

Magnesium helps D3 to work and comes in different forms, check to see which would suit you best and as it's calming it's best taken in the evening, four hours away from thyroid meds

naturalnews.com/046401_magn...

Check out the other cofactors too.

As you obviously have absorption problems I would look for a K2-MK7 oral spray - in fact Better You have now brought out a combined D3/K2-7 oral spray so you could change to that.

Get magnesium in a non-tablet form, maybe magnesium oil or cream, take epsom salt baths, there are magnesium drops. Magnesium is needed to help D3 to work.

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I am very surprised that your private nutritionist hasn't been more helpful about your absorption problem.

I told my GP I don't think I was absorbing the ferrous fumarate and he said what a silly thing to say. Monitored by GP, no longer by haematologist who has said I no longer need iron infusion.

Some haematologists say if ferritin falls below 50 then refer back to them for another infusion. I think I would have punched your GP in the face by now!

Your GP sounds horrendous! I would not take that nonsense from anybody - so sorry you have had this to deal with. Perhaps find another GP? You definitely need a second opinion. Chin up - I've had most of these diagnoses too, and have come out the other side. I did a lot of my own research and had a helpful doctor. Good luck to you.

Nutritionist did no further testing and asked me to take 25 other supplements which at the time I could not afford to do

Are you still consulting with this nutritionist?

I no longer consult with her, I saw her once in 2014 and that was it. I have seen no other nutritionists since this.

OK, that's fine. You'll probably do just as well sticking to the forum, the collective knowledge of members probably covers everything a doctor knows (and doesn't know) about thyroid disease and nutrients too, and it's free :)

Well she was recommended - I was disappointed after my first and only session with her, no investigations, no tests etc. All I had was about 3 or 4 pages of paper stapled together on the gut, food intolerances etc and what supplements I was meant to take. It was all posted to me.

Folic acid weekly because GP didn't like the folate level being >20 when taking it.

Only had 1 B12 injection and no loading doses over 2 weeks. Haven't had it followed with 3 monthly injections.

Please go and post on the Pernicious Anaemia Society forum as suggested. They will give you the best guidance and tell you how to deal with this.

I presume you have thyroid disease? Have you got thyroid antibodies? What were your last thyroid test results?

Were you tested for intrinsic factor antibodies to exclude pernicious anaemia? Your folate is so low. Methylfolate is the most absorpable form of folic acid. Have you considered Coeliac disease? Have you tried going gluten free?

There are several kinds of iron supplements, have you tried different kinds to see if you tolerate them better? SeasideSusie suggests taking vitamin C with iron to aid absorption.

It's best to take a good B complex when you take B12 and folic acid to balance the B's.

25mcg levo since 2011.

TSH 10.3 (0.2 - 4.2)

Free T4 11.2 (12 - 22)

You are very underdosed. It will aggrevate vitamin deficiencies and cause low stomach acid which will interfere with absorption of nutrients. You need a dose increase of levothroxine. Your doctor should never have left you on a dose of 25mcg. That is a starter dose, not enough to keep a gnatt alive. You need to increase to 50mcg and retest in 4-6 weeks and then raise the dose again until you reach a TSH of around 1.0 or a little lower which is where most people feel well.

Are you taking any other meds and do you always take your levothyroxine fasting on an empty stomach with a full glass of water, leaving an hour before eating or drinking anything and 4 hours apart from any other medication?

Thanks no other medication and I take the thyroid medication on an empty stomach with a full glass of water, leaving an hour before eating and drinking and 4 hours apart from any other medication

Thyroid peroxidase antibodies 276 (<34)

Thyroglobulin antibodies 359.5 (<115)

GP told me negative for Hashimotos

You have Hashimotos. Change your doctor, he/she knows nothing about thyroid disease. You have been left very underdosed for a long time which has probably caused your vitamin deficiencies. I would make an immediate apt with another doctor and point this out and get your dose increased immediately and then address your other deficiencies.

Incredible! Why are ill informed and educated GPs paid so much for doing such a bad job? What did he learn a medical school? This is seriously shocking.

Can't you see another GP or are they all useless at your surgery, as in many sugeries unfortunately?

I couldn't stomach too many iron tablets and had difficulty taking them that amount of times during day because of other meds. I got a 320 ferrous fumerate prescribed instead of 210 which helped more. Also try taking it with orange juice or with porridge as stopped the stomach issues for me.

You really need to get the B12 issue sorted as is really dangerous and can cause permanent neurological damage. You need to show them the NICE guidelines for treatment of B12 deficiency and get tested for pernicious anaemia. It's also not good to raise your folate until B12 addressed and on the up.

You really need to be on a higher thyroid dose and get this treated correctly so find a better GP but if you still can't seem to get your vitamin levels normal you need to think about things like coeliacs disease or non-coeliacs gluten sensitivity, all my similar issues to you and lifelong deficiencies disappeared after I went gluten free along with pretty much everything else :-)

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