Thyroid UK
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Has anyone got any general advice before I go onto levothyroxine?

Hi all

I would be grateful for some advice.

I was diagnosed with an underactive thyroid a couple of years ago. I've been a bit reluctant to go on to levothyroxine as I'm only 27 and feel that there's a long time ahead of taking the medication. I am also a bit anaemic and I've wondered how much of my tiredness has been linked to that. I am now thinking that I need to go onto the levo as feeling constantly tired with 'brain fog'. Guess I'm just seeking a bit of reassurance and any advice. I'm going to ask for a B12 and Vit D test as I think i'll be deficient in these too.

My Anti-bodies were last tested in Feb 2017 and are at 381 (0:00-34.00 normal range)

Other test results from Nov 2017:

Serum TSH level 12.1 (normal range 0.30-4.20)

Serum free T4 14.5 (12-22.00 )

Serum ferritin 4.9 (13-150.00)

Thanks all :)

Emily

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I'm only 27 and feel that there's a long time ahead of taking the medication

I was younger than you when I started Levo, as were a lot of people.

Please don't think of Levo as medication. It isn't. It's hormone replacement which you need because you don't produce enough of it yourself. If you were diabetic, would you refuse insulin?

Your raised antibodies confirm autoimmune thyroid disease aka Hashimoto's which is where antibodies attack the thyroid and gradually destroy it.

You can help reduce the antibodies by adopting a strict gluten free diet which has helped many members here. Gluten contains gliadin (a protein) which is thought to trigger autoimmune attacks so eliminating gluten can help reduce these attacks. You don't need to be gluten sensitive or have Coeliac disease for a gluten free diet to help.

Supplementing with selenium l-selenomethionine 200mcg daily can also help reduce the antibodies, as can keeping TSH suppressed.

As most doctors attach little importance to antibodies, you might want to read and learn so you can help yourself:

Gluten/thyroid connection: chriskresser.com/the-gluten...

stopthethyroidmadness.com/h...

stopthethyroidmadness.com/h...

hypothyroidmom.com/hashimot...

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

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Serum TSH level 12.1 (normal range 0.30-4.20)

Serum free T4 14.5 (12-22.00 )

You are profoundly hypothyroid with a TSH of 12.1, some people wouldn't be able to function at all at that level.

You need to start Levo and the aim of a treated hypo patient generally is for TSH to be 1 or below or wherever it needs to be for FT4 and FT3 to be in the upper part of their respective reference ranges when on Levo.

After starting Levo, you should be retested 6 weeks later, an increase in dose of 25mcg, another retest after 6 weeks, another increase if necessary, and so on until your levels are where they need to be for you to feel well.

When booking thyroid tests, always book the very first appointment of the morning, fast overnight (water allowed) and leave off Levo for 24 hours. This gives the highest possible TSH which is needed when looking for an increase in dose or to avoid a reduction. TSH is highest early morning and lowers throughout the day. It also lowers after eating. This is a patient to patient tip which we don't discuss with doctors or phlebotomists.

You should take your Levo on an empty stomach, one hour before or two hours after food, with a glass of water only, no tea, coffee, milk, etc, for an hour either side as absorption will be affected. Take any other medication and supplements 2 hours away from Levo, some need 4 hours.

**

Serum ferritin 4.9 (13-150.00)

You urgently need to see y our GP about your dire ferritin level. Low ferritin can suggest iron deficiency anaemia. You need a full blood count and iron panel. You also need an iron infusion which will raise your level within 24-48 hours, tablets will take many months. Refuse iron tablets, they will take many months to raise your level.

If you are eventually prescribed iron tablets, then take each one 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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Hi Emily 1990

The experts will be along shortly.

If antibodies present you have Hashimoto’s (like me).

You need to get your iron, vitamin D and B12 tested as if they are low you will be feeling bad and Levothyroxine will not help.

Ask your GP to test those, or pay yourself for private bloods, medi checks or blue horizon.

I’m surprised your GP has not started you on Levothyroxine with a TSH of 12.1, anything over 10 the NHS normally prescribed.

I have just been put on Levothyroxine as my TSH was 12.2.

Don’t let them give you a starting dose of 25 mcg, (advice on here) that’s normally for older people.

Ask for a start dosage of 50mcg, then book another blood test in 6 weeks time later to see how your thyroid is doing with the medication. Then request an extra dose of 25mcg each time, again checking your bloods.

As others have said you are normally only tested on your TSH, but make sure your other thyroid is tested as well.

Ultimately, it’s how you feel on the dosage that matters, but the doctors go by TSH normally, not how we are feeling.

You really need to get your vitamins tested first, if low you need supplements.

As you have antibodies present, gluten and dairy free may also help with your symptoms. It has for me.

Everything I have learnt is from this and other Thyroid forums.

Listen to advice on here, and put that into practice and you will soon be feeling better.

Best wishes

Peanut31

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Hi SeasideSusie and Peanut 31, thank you very much for your posts. Really appreciate it.

I've just come back from an appointment with GP and have booked in a B12 & Vitamin D test as well as ferritin, TSH, UECR, DIFF and CBC.

The GP didn't seem concerned about the antibodies but said that, because of my T4 being in the normal range, I have sub-clinical hypothyroidism. He seemed to think it was a good idea to start on levo but that I could come off it.

I have been meaning to give gluten free a go so will try and see how I get on.

Quite confused at all the different information out there and the two GPs I've seen have given quite different advice!

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Sorry, I mean TSH being in the normal range! T4 isn't!

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Your TSH isn’t in normal range it’s 12.2

Levothyroxine will be taken for life, as per NHS website. It’s not something you take for a few months

I think your GP’s perhaps doesn’t know enough on this, which is not uncommon

I had an endocrinologist like that, after joining this website it soon became clear that I knew more than him.

Research as much as you can.

Best wishes

Peanut31

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Thanks Peanut, I will!

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Sorry Emily but with a TSH of 12.1 and your refusal to take levothyroxine is crazy

Your causing more damage in your body by not treating hypothyroid

To say your too young to take replacement medication is crazy my grandaughter had to start taking levo age 9

Levo is not a drug its a replacement hormone

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Thanks reallyfedup. I haven't refused, just wanted to get more information about it. I'm going to go onto the levothyroxine.

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