Thyroid UK

Feel very confused - help for newbie please

Hi I am here to ask is it better to improve vitamin and mineral levels first before increasing dose of Levo? I believe I need some help with my supplements, I have bought the following

Vit C 1000mg

Magnesium spray

B complex

Selenium

Vitamin E 400iu

Prescribed the following

Vit D 800iu

Folic 5mg

Hydroxocobalamin injections once every 3 months

210mg ferrous fumarate once a day

I have spent so long trying to do the right thing only to feel worse. Just want things with my health to go right.

Diagnosed hypothyroid 2011, taking 100mcg levo.

Thanks

31 Replies
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Sasha8,

No, if you are undermedicated on Levothyroxine you need a dose increase and if you have low vitamins and minerals they should be addressed at the same time.

If you post your thyroid, vitamin and mineral results and ranges I can let you know whether you are optimally dosed or need to increase doses.

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TSH 5.9 (0.2 - 4.2)

FT4 14.8 (12 - 22)

FT3 3.2 (3.1 - 6.8)

TPO antibody 1200 (<34)

TG antibody 448.5 (<115)

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Sasha8,

You are undermedicated to have TSH 5.9 on 100mcg and should ask for a dose increase.

The goal of Levothyroxine is to restore the patient to euthyroid status. For most patients that will be when TSH is 0.2 - 1.0 with FT4 in the upper range. FT4 needs to be in the upper range in order that sufficient T3 is converted. Read Treatment Options in thyroiduk.org.uk/tuk/about_... Email dionne.fulcher@thyroiduk.org if you would like a copy of the Pulse article to show your GP.

Thyroid peroxidase antibodies are positive for autoimmune thyroid disease (Hashimoto's). There is no cure for Hashimoto's which causes 90% of hypothyroidism. Levothyroxine treatment is for the low thyroid levels it causes. Many people have found that 100% gluten-free diet is helpful in reducing Hashi flares, symptoms and eventually antibodies.

chriskresser.com/the-gluten...

thyroiduk.org.uk/tuk/about_...

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Ferritin 3 (30 - 400)

Folate 0.6 (4.6 - 18.7)

Vitamin B12 155 (180 - 900)

Vitamin D 4.2

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Sasha8,

They're all severely deficient. Do you have results for iron panel and full blood count? Has your GP prescribed anything?

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Nothing prescribed

Red blood cell count 2.9 (3.8 - 5.8)

White cell count 4.1 (4 - 11)

MCV 70.2 (83 - 98)

MCHC 385 (310 - 350)

Haemoglobin estimation 104 (115 - 150)

Platelets 236 (140 - 500)

Transferrin saturation 11 (12 - 45)

Iron 3.7 (6 - 26)

Reply

Sasha8,

You need to see a GP as soon as possible. I would make a formal complaint to the practice manager about the lack of treatment for your severely deficient vitamins and minerals.

You have severe iron deficiency anaemia. Your GP should refer you to a haematologist to investigate why your red cell count is so low and to arrange an iron infusion.

B12 is deficient. GP should have initiated B12 injections and investigated further to see whether pernicious anaemia is causing B12 deficiency. healthunlocked.com/pasoc are the experts on PA, B12 and folate. Contact them for more advice.

Folate is deficient. GP should prescribe 5mg folic acid which should not be started until 48 hours after the first B12 injection.

Vitamin D is severely deficient. Your GP should refer to local guidelines or the cks.nice.org.uk/vitamin-d-d... Do NOT accept a prescription for 800iu which is a mainte-nance dose prescribed after vitD is replete >75. My GP prescribed 40,000iu daily x 14 followed by 2,000iu daily x 8 weeks which raised vitD from <10 to 107. Vitamin D should be taken 4 hours away from Levothyroxine.

Your levels are so low it indicates malabsorption. It would be a good idea for your GP to check tissue transglutaminase to rule out coelia disease. You need to eat gluten in 2 meals daily for up to six weeks prior to the blood test or the result will be skewed.

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Sasha

" Nothing prescribed "

have you seen your GP yet?

I ask because, 20 minutes before you posted this reply you said that your GP says you need supplements.

You must be feeling very tired and unwell with these results.

Please see your GP in the morning.

Reply

Sasha

Do you have the date of these tests?

Who prescribed the 3 monthly injections of Hydroxocobalamin (B12) and 210mg Ferrous Fumarate tablets x one a day you mention in your post? And when was each commenced?

See a different GP tomorrow and ask for Emergency appoinment in Haematology.

Reply

Date of tests was Dec 2017, B12 commenced in Feb 2016 and stopped Feb 2017. Iron commenced Dec 2013 and stopped Feb 2017 will see different GP tomorrow

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Is there anyone who can go with you to GP?

You must be exhausted. Check back here or do another post (just mention previous posts) and let us know what treatment you are given and supplements presribed if you feel up to it.

I hope you get proper treatment tomorrow. Hopefully you will be seen in Haematology and get the injections you need.

Reply

Sasha

You have two posts!

Reply

You should really have blood tests, which GP should do to know for sure whether or not you need to supplement vitamins/minerals. The GP should prescribe those that are too low.

Personally, I think we have to keep our thyroid hormones at optimal and that includes Free T4 and Free t3. I shall give you a link which explains why.

thyroiduk.org.uk/tuk/testin...

thyroiduk.org.uk/tuk/testin...

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I have these

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TSH 5.9 (0.2 - 4.2)

FT4 14.8 (12 - 22)

FT3 3.2 (3.1 - 6.8)

TPO antibody 1200 (<34)

TG antibody 448.5 (<115)

Reply

These are your thyroid hormone tests so GP should test your vitamins/minerals at the next blood test.

I note you were diagnosed in 2011, so it is very frustrating for you to still feel very unwell and that is due to you being on far too low a dose of thyroid hormones. The aim is sufficient to bring our TSH to 1 or lower and both frees towards the upper part of the range, whereas yours are too low.

You also have a version of hypothyroidism, which is the commonest cause of hypo and it is called an Autoimmune Thyroid Disease because of the antibodies. These antibodies attack your thyroid gland and wax and wane, sometimes you feel hyper due to the rush of hormones and other times hypo. You are not hyperthyroid.

To reduce the attack of the antibodies on the gland, you can try going gluten-free which can help.

You have the option of asking your doctor to increase your dose every six weeks with a 25mcg increase in levo, saying you've had advice from the NHS Choices for help/advice Healthunlocked Thyroiduk.org.uk and have been told your TSH is far too high for someone diagnosed in 2011 and the aim is a TSH of 1 or lower.

If you were on an optimum dose of levo (or even other options (i.e. NDT or T3 added to T4) you should be well with no clinical symptoms at all.

thyroiduk.org.uk/tuk/about_...

thyroiduk.org.uk/tuk/about_...

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Shaws

The poster has another post thread with nutrients tests results only.

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Thank you. She has also now posted them on here too.

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And GP says I need the supplements

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Can you post your test results and the ranges for vitamin D, folate, ferritin and B12

Do you also have high thyroid antibodies?

Your dose of Levothyroxine needs increasing

Your vitamins are probably low as result of being under medicated

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Ferritin 3 (30 - 400)

Folate 0.6 (4.6 - 18.7)

Vitamin B12 155 (180 - 900)

Vitamin D 4.2

1 like
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TPO antibody 1200 (<34)

TG antibody 448.5 (<115)

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So go and see your GP tomorrow.

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Ferritin 3 (30 - 400)

Folate 0.6 (4.6 - 18.7)

Vitamin B12 155 (180 - 900)

Vitamin D 4.2

So what do I do please?

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So do I need supplements and Levo please or am I imagining my symptoms?

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We cannot imagine symptoms, they are very real so it is down to the GP or Endocrinologist if they haven't resolved our symptoms. SlowDragon will respond re your results. Your thyroid antibodies are high, so you have a form of hypothyroidism called Autoimmune Thyroid Disease. These antibodies attack your gland until you are hypothyroid and they wax and wane until you do so. To reduce them going gluten-free can help.

First make an appointment with your GP and tell him you've taken advice from Healthunlocked Thyroiduk.org.uk who are the NHS Choice for help/advice. Tell him you need an increase of 25mcg of levo every six weeks till TSH is 1 or lower. You also need a Free T4 and Free T3 in the upper part of the range (he or lab may not do the latter two but you can get them through one of our private labs).

Tell him your vitamins/minerals are too low so should prescribe to raise them but before he does anything about B12, tell him he needs to do an Intrinsic Factor Test to ensure you do not have Pernicious Anaemia. You are definitely too low on B12 which should be around 1,000 according to experts.

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Sasha

These vitamins are really low. Can you see any GP at the surgery tomorrow as an emergency appointment

How long since this test was done and what has your GP said or prescribed

Vitamins are low because you are very under medicated.

So you will need to increase Levo dose in 25mcg steps until TSH is around one and FT4 towards top of range and FT3 at least half way in range

But at the same time urgent supplements are required

First thing is to ask GP for coeliac test too

Just wondering, have you had T3 started and then stopped. This always causes dire vitamins

Anyway to supplements

Vitamin D, you need loading dose. This is a very high dose for a short while

Look up your local CCG guidelines for Vitamin D deficiency

Eg Oxfordshire

oxfordshireccg.nhs.uk/profe...

Your GP should prescribe

B12 you need immediate testing for Pernicious Anaemia and urgent loading B12 injections

You need far more frequent injections

Folate needs folic acid supplements but these should not be started until after first B12 injection

Ferritin is dire. You need immediate ferrous fumerate supplements and very likely an iron infusion

All these are direct result of having too little Levothyroxine

Here is detailed supplements advice from SeasideSusie

Low vitamins due to under medication

healthunlocked.com/thyroidu...

But also you have high thyroid antibodies

this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease). About 90% of all hypothyroidism in Uk is due to Hashimoto's

Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels

Low vitamin levels affect Thyroid hormone working

Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

But don't be surprised that GP or endo never mention gut, gluten or low vitamins. Hashimoto's is very poorly understood

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies

Ask GP for coeliac blood test first

thyroidpharmacist.com/artic...

thyroidpharmacist.com/artic...

amymyersmd.com/2017/02/3-im...

chriskresser.com/the-gluten...

scdlifestyle.com/2014/08/th...

drknews.com/changing-your-d...

thyroidpharmacist.com/artic...

Come back tomorrow after emergency appointment and let us know what GP has prescribed

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Test was done Dec 2017 nothing prescribed never had T3 before

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so make emergency appointment tomorrow

How long since last B12 injection?

You might also want to ask advice about how to get better frequency of B12 injections on PAS healthunlocked - they are the B12 experts

healthunlocked.com/pasoc

also see my post earlier today about B12 being directly linked to low stomach acid which is direct consequence of being under treated for hashimoto's

healthunlocked.com/thyroidu...

Dr Gominack suggests daily supplements are just as good

drgominak.com/sleep/vitamin...

Many of us who don't have B12 as low as yours do take B12 sublingual lozenges as supplements everyday.

Jarrow do 1000mcg or 5000mcg

If you can not get frequency of injections improved its perhaps a better option than nothing

1000mcg 2-5 times per day might be better than 5000mcg all in one go

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Sasha...how many times do you have to be told ...your ferritin, folate,b12,vit d3 must be raised to halfway in their ranges in order for your body to be able to properly utilise the levothyroxine ...so yes you need supplements and probably for life

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Sorry didn't reply on other supplements

You can start selenium straight away and vitamin E

Vitamin C is good for adrenals, so yes start that straight away

We usually say only start one thing at a time, but you could start those three

Magnesium can be started alongside Vitamin D. Both magnesium and vitamin D tablets must be 4 hours away from taking Levothyroxine

With high dose vitamin D it's also good idea to take vitamin K2 Mk7. This helps send the increased calcium towards bones not muscles.

You must insist on more frequent B12 injections

Taking good vitamin B complex is recommended, especially if having B12 injections

If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 3-5 days before any blood tests, as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

Your GP has been negligent to let things get this bad

Prof Toft - article just published now saying T3 is likely essential for many

rcpe.ac.uk/sites/default/fi...

But with Hashimoto's we must get vitamins optimal and Levo dose increased so TSH is around one and FT4 towards top of range

Extremely likely you need to be strictly gluten free too

If your FT3 remains low then, like many with Hashimoto's you may need addition of small dose of T3

DIO2 gene test might be something to consider too

thyroiduk.org.uk/tuk/testin...

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