Thyroid UK
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Vitamins and minerals

Hi everyone. So my symptoms are confusion, disorientation, pins and needles, tiredness, anxiety, feeling colder, constipation every day, muscles and joints locking up and aching, dry skin all over legs. I have eczema which has gone on since I was a child (age 5) and I am now 32.

I had vitamin D tested in November 2013 and it came back at 42.5 (25 - 50 deficient) so GP prescribed me vitamin D 800iu. I was told by a friend in March 2014 that 800iu wasn't a lot so I upped it to 3000iu in March 2014 and in May 2015 my level was 53.6 (50 - 75 suboptimal) I continued taking 3000iu until January 2016 and my level was then 72 (50 - 75 suboptimal) I felt that my vitamin D wasn't improving as much as I'd like so I increased it to 5000iu and I am guessing the level must have gone down a lot because in May 2017 it was 70.5 (50 - 75 suboptimal) I have been taking 5000iu since then.

I was diagnosed iron deficient in August 2013 and started on iron tablets, 3 times a day since my periods were very clotty and heavy. My ferritin level was 15 (15 - 150) and MCV was below range and MCHC above range. An iron infusion done through haematology boosted my ferritin to 187 (15 - 150) but MCV remained below range and MCHC above range at around about the time of my period. At the moment I only take 1 iron tablet per day, I am not sure why. Ferritin was 101.5 in January 2017.

Ferritin in June 2017 58.3 (15 - 150)

I also have folate deficiency and I take 5mg folic acid per day since December 2016.

Folate in June 2017 2.3 (2.5 - 19.5)

I take B12 injections once every 3 months for possible B12 deficiency but for some reason my GP surgery has ordered an Intrinsic Fator Antibody test despite previous one coming back negative. Vitamin B12 last checked in February 2017, not checked I am guessing because the injections would have skewed results. Vitamin B12 went from 548.3 to below result within 3 weeks!

Vitamin B12 335 (190 - 900)

Any idea what to do next appreciated.

Thanks

9 Replies
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Has your doctor excluded coeliac disease as it looks like your absorption of vitamins is poor. What about your levothyroxine? Are you absorbing it? What levothyroxine and how much are you taking?

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I take 50mcg Levo (Actavis) and I haven't been checked for coeliac disease.

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Your now significantly under medicated

About 5% with Hashimotos are coeliac.

Only reliable test is endoscopy after high gluten rich diet for 6 weeks before.

Over 80% find gluten free diet helps reduce symptoms as helps heal gut

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Alexiaa The best thing to do about your B12/Folate is to post on the Pernicious Anaemia Society forum for further advice healthunlocked.com/pasoc Also mention your ferritin and iron deficiency information.

As SlowDragon has mentioned in your other post, removing your T3 and lowering your dose of Levo has very likely had the effect of worsening your levels.

As for your Vit D, you said before "I supplement 3000iu vitamin D", now you're saying you've been taking 5000iu since May. You could increase your dose but it's doubtful as to whether it will be absorbed and make much difference with things as they are. You don't say what form of D3 you are taking, but SlowDragon advocates the use of a spray when you have Hashi's, it is absorbed better than softgels or capsules, so you might want to consider that.

As for your ferritin/iron deficiency, you need to ask your doctor about this. Are you under a haemotologist and being monitored? If you are still iron deficient then 1 x ferrous fumarate daily isn't enough.

Optimal levels needed are

Vit D - 100-150nmol/L according to the Vit D Council

Ferritin - at least 70 for thyroid hormone to work, recommended is half way through it's range

Folate - at least half way through it's range

B12 - very top of range, 900-1000. An extract from the book, "Could it be B12?" by Sally M. Pacholok:

"We believe that the 'normal' serum B12 threshold needs to be raised from 200 pg/ml to at least 450 pg/ml because deficiencies begin to appear in the cerebrospinal fluid below 550".

"For brain and nervous system health and prevention of disease in older adults, serum B12 levels should be maintained near or above 1000 pg/ml.

You obviously need to address the Hashi's, try to educate your doctor in how the fluctuating antibodies affect the patient and manage any hypo/hyper/hypo swings with adjustment/readjustment more suitable than what has previously happened. You also need to address the gut/absorption problems following SlowDragon's suggestions, and ultimately aim for the opltimal nutrient levels mentioned above. You could do with having T3 added back in, if your doctor wont allow this (and may not due to the fact that the NHS is want to de-prescribe it due to it's extortionate cost) then you could look at self sourcing it. Personally, in your position, I would be up front with your doctor and tell him that is what you are going to do if he doesn't reinstate it. However, no thyroid hormone will work until the nutrients are optimal and your absorption problem addressed. Then if you self source T3 you should post your newest results - TSH/FT4/FT3 - and members will suggest doses.

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Thanks I take the vitamin D spray by Better You

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I am monitored by GP for iron deficiency and my MCV is sill below range and my MCHC is still above range, haematology discharged me despite this and I still take 1 ferrous fumarate a day.

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Then you must speak with your GP. Either ask to be referred back to haematology or he needs to sort it. For iron deficiency the treatment is 2 or 3 x ferrous fumarate daily - see 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.

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You could take B12 sublingual lozenges daily between injections

Also recommended to take a good vitamin B complex to keep all other B's in balance

But remember to stop B complex 3-5 days before any blood tests as biotin can falsely affect test results

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Suggest you post these test results on PAS healthunlocked

healthunlocked.com/pasoc

They are the B12 experts and can advise on what steps to take to get full B12 testing from GP

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