Low vitamins and minerals after T3 was taken away please help

After T3 was taken away

Ferritin 44 (30 - 400) confirmed iron deficient

Vitamin D 30.5 (25 - 50 deficient) not sure which dose vit D I take, I take 800iu and never given loading dose even though vit D was below 30 at diagnosis

Folate 2.3 (2.5 - 19.5) GP says only just below range acceptable

Vitamin B12 231 (190 - 900) waiting on B12 injections

Before T3 was taken away

Ferritin 187 (30 - 400) after iron infusion

Folate 10.1 (2.5 - 19.5)

Vitamin B12 547 (190 - 900)

Thanks

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oldestnewest

Hello Shiki, just realised how late it is now but I'm sure people will respond soon or tomorrow morning.

New thread for vitamins advice following on from first post at healthunlocked.com/thyroidu...

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For information - healthunlocked.com/thyroidu...

Shiki

Ferritin 44 (30 - 400) confirmed iron deficient

As you have been confirmed iron deficient, have you been given any treatment? Here is 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 make sure you get the appropriate treatment. Take each iron tablet 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.

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. 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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Vitamin D 30.5 (25 - 50 deficient) not sure which dose vit D I take, I take 800iu

You take a dose of 800iu. You are actually only 0.5 away from the level where you would be given loading doses, you could point this out to your GP and ask if you can have them considering your level was below 30 originally - see NICE treatment summary for Vit D deficiency: cks.nice.org.uk/vitamin-d-d... "Treat for Vitamin D deficiency if serum 25-hydroxyvitamin D (25[OH]D) levels are less than 30 nmol/L. For the treatment of vitamin D deficiency, the recommended treatment is based on fixed loading doses of vitamin D (up to a total of about 300,000 international units [IU] given either as weekly or daily split doses, followed by lifelong maintenace treatment of about 800 IU a day. Higher doses of up to 2000IU a day, occasionally up to 4000 IU a day, may be used for certain groups of people, for example those with malabsorption disorders. Several treatment regims are available, including 50,000 IU once a week for 6 weeks (300,000 IU in total), 20,000 IU twice a week for 7 weeks (280,000 IU in total), or 4000 IU daily for 10 weeks (280,000 IU in total)."

Each Health Authority has their own guidelines but they will be very similar. Go and see your GP and ask if he will give you the loading doses. Once these have been completed you will need a reduced amount (more than 800iu so post your new result at the time for members to suggest a dose) to bring your level up to what's recommended by the Vit D Council - which is 100-150nmol/L - and then you'll need a maintenance dose which may be 2000iu daily, it's trial and error so it's recommended to retest once or twice a year to keep within the recommended range. You can do this with a private fingerprick blood spot test with City Assays vitamindtest.org.uk/

If you can't have the loading doses then the best thing you can do is do it yourself. Buy some D3 and take 10,000iu daily for 4 weeks (280,000iu, same as loading doses), then reduce to 5000iu daily and retest 3 months after starting.

As you have Hashi's, for best absorption you should get an oral spray such as BetterYou D3 - 3000iu dose and take 9000iu daily to start then reduce to 6000iu daily after 4 weeks.

Your doctor wont know, because they are not taught nutrition, but 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.

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Folate 2.3 (2.5 - 19.5) GP says only just below range acceptable

No, that's not acceptable. A range is a range and is there for a reason. If you are below range then it's called a deficiency and needs addressing. You will need folic acid prescribing but you shouldn't start taking it until your B12 injections have started.

Vitamin B12 231 (190 - 900) waiting on B12 injections

Are you getting 6 loading injections over a period of 2 weeks? That is the norm, then 3-monthly injections after that. Make sure you get them on time.

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Take someone with you to your appointment when you see your GP about this. Doctors are less likely to fob us off when there is a witness, and they can also speak on your behalf if necessary.

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Thanks I haven't taken any iron at all since the iron infusion. I was prescribed ferrous fumarate but it unsettled my stomach. I told the GP and he said "tough" and didn't offer me any other help. I get B12 injections every 3 months only.

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Sounds like a very helpful GP...NOT...is there someone else in the practice you could see? NICE guidelines say that if one kind of iron supplements upset you, the doctor should try another one. See the link Susie has provided.

If your B12 injections are not frequent enough then post your results on the HealthUnlocked Pernicious Anaemia forum for best advice.

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Yes there is another GP I can see in the practice

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Shiki

I told the GP and he said "tough" and didn't offer me any other help

Well, I think that sort of remark warrants a complaint to the practice manager. No doctor has the right to talk to a patient in that manner, it is disrespectful.

As you can see from my post above, the NICE CKS states that

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

So your GP should find you something else that does suit you. If all else fails, he should refer you to a haematologist. Some haematologists say if ferritin falls below 50 again then re-refer for another iron infusion.

See a different GP, this one is a total jerk.

As far as your B12 injections are concerned, if you post on the Pernicious Anaemia Society forum they can give you advice on what to do in these circumstances healthunlocked.com/pasoc

In future, once levels are raised, you shouldn't just stop supplementing, the idea is to maintain the new levels with lower dose supplements (or in the case of ferritin, eating liver should maintain a good level).

Optimal levels for us Hypos are

Ferritin - minimum 70, recommended for females 100-130

Vit D - 100-150nmol/L

Folate - at least half way through it's range

B12 - 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."

Doctors generally don't have any knowledge of optimal levels, they're not taught nutrition so as far as they're concerned anywhere within the range, even 1 point up from the bottom, is fine. Unfortunately, that doesn't help us.

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Thanks I was referred to a haematologist in 2016 for the iron infusion and when the monitoring came back with my ferritin at 187 the haematologist said now that my ferritin is ideal unless it goes below 50 again I don't need to be seen again. Well now I clearly do need to be seen again surely

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Shiki

the haematologist said now that my ferritin is ideal unless it goes below 50 again I don't need to be seen again. Well now I clearly do need to be seen again surely

Yes you do, you know it, so ask to be referred back to the haematologist.

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Shiki,

Try iron bisglycinate. Supposed to be gentle on the stomach. Make sure you take iron at least 4 hours away from Levothyroxine.

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Please can you get in touch with TUK to report this woeful "treatment". We are seeing a lot of people reporting the same issues as you, T3 removed or Levo dose lowered and no account taken of lamentable vits levels etc.

Hopefully someone else will come along with the correct email address for TUK but you can google and find the info. we need to start collating when and where this lack of treatment is happening, there is too much of it (lack of competent patient care) when you read stories on here over the last few months. It is a national scandal how thyroid patients are NOT being treated.

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Thyroid UK are collecting evidence of malpractice due to removing clinically needed T3

Please consider sending a brief outline of this. How T3 improved you and the subsequent disaster since it was stopped. I would include the dire vitamin levels

thyroiduk.org/tuk/get_invol...

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