Thyroid UK
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Newbie here - results added

Just wondering how long it would take to feel better on levothyroxine? I have been taking it since diagnosis in 2011 and have not felt any better on it. Levels of thyroid hormone go up and down, medication dose changes go up and down, I just want to feel normal again and the last time I ever felt normal was about 25 years ago. :(

I am fed up of making mistakes at work, being so tired, getting breathless walking up hills, muscles in legs aching, joints going stiff, losing concentration, losing hair, eyes going puffy, periods draining me every month, stomach hurting from build up of constipation, list goes on...

I just don't know what to do for the best and I feel like I will never get any better. Any advice would be appreciated. Thank you

TSH - 4.80 (0.2 - 4.2)

FREE T4 - 14.8 (12 - 22)

FREE T3 - 3.2 (3.1 - 6.8)

THYROID PEROXIDASE ANTIBODIES *807.5 (<34)

THYROGLOBULIN ANTIBODIES *563.3 (<115)

16 Replies
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Welcome to the forum, Bexs1.

You are undermedicated to have TSH 4.80 while taking Levothyroxine 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 and thyroglobulin 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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TSH - 4.80 (0.2 - 4.2) Your TSH level is too high. How much levothyroxine are you taking? You need a dose increase. Most people don't feel well until their TSH is 1 or a little lower.

FREE T4 - 14.8 (12 - 22) FT4 is low, as you can see it's near the bottom of the range and it's better in the top third of the lab range.

FREE T3 - 3.2 (3.1 - 6.8) As you do not have enough FT4, your body is unable to convert enough T3 for your needs and so your FT3 i low, only just in the bottom of the range. This shows you need a dose increase. You heart, brain and all your cells need enough T3 to function properly.

THYROID PEROXIDASE ANTIBODIES *807.5 (<34), THYROGLOBULIN ANTIBODIES *563.3 (<115) These antibodies show you have autoimmune thyroid disease otherwise known as Hashimotos.

You should also ask your doctor to test B12, folate, ferritin and vitamin D as all can be low in people with thyroid disease. When you have the results then post here for best advice. Docs often say all fine but if you're bumping along the bottom of the NHS range then you won't feel well.

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Thanks I take 150mcg levothyroxine.

I supplement B12, folate and ferritin and vit D as well, I have results of these

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Do you know what your results are for these vitamins and are the supplements you're taking sufficient? 150mcg levo is quite a reasonable amount but you need to increase by 25mcg and retest in 6 weeks time, adjust dose again and so on until your TSH is nearer to 1. Do you think you might have problems absorbing nutrients? Many people with Hashimotos find they need to go gluten free.

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Thanks I have posted a question specifically about going gluten free and if there are any easy/affordable gluten free recipes.

Vitamin B12 183 (180 - 900)

Folate 1.3 (4.6 - 18.7)

Vitamin D 20.4 (>25 severe vitamin D deficiency) taking 800iu D3

Ferritin 35 (30 - 400)

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800iu of vitamin D won't help a deficient mouse let alone someone with levels below 30. Are you in the UK? If so there are guidelines your GP should follow and as your vitamin D is under 30 your GP should prescribe loading doses of vitamin D and then an adequate maintenance dose. You need to aim for a level around 100nmol. Ask your GP for the correct treatment according to the NICE guidelines or local CCG guidelines. Local CCG guidelines will be similar.

cks.nice.org.uk/vitamin-d-d...

The vitamin D Council gives some advice about levels to supplement if your GP cannot prescribe sufficient amounts of vitamin D3.

You may wish to take magnesium and K2-MK7 with vitamin D3 in order to absorb the vitamin D effectively. Magnesium citrate is ok but there are other choices for magnesium.

naturalnews.com/046401_magn...

Have you got symptoms of B12 deficiency because if so, I advise you to post your B12 and folate results along with an outline of your thyroid condition and symptoms, low ferritin etc on the HealthUnlocked Pernicious Anaemia forum healthunlocked.com/pasoc and ask their advice about what your GP should be doing. Really, it looks like you need further investigations to rule out pernicious anaemia. Your GP should check for intrinsic factor antibodies.

B12 symptoms of deficiency

b12deficiency.info/signs-an...

B12 The Guidelines Doctors follow

onlinelibrary.wiley.com/doi...

onlinelibrary.wiley.com/doi...

Ferritin needs to be at least 70 or mid-range for thyroid hormone to function properly. Have you had a full iron panel because if not, your GP needs to do one.

Iron deficiency anaemia NICE guidelines

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

The importance of vitamins and thyroid function

americannutritionassociatio...

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Hi thanks yes I am in the UK. Iron was 8 (6 - 26) transferrin saturation 13 (12 - 45)

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What did the doctor say about low in range iron levels?

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I was hoping the GP would explain, I said they were low in range and he said they were still normal no action needed

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Well doctor should offer supplements for below range ferritin as iron only just in range. Check the guidelines but if it's too much of a battle then take your health into your own hands and buy your own. I've used liquid Spatone but there are other choices. You should retest in 4/5 months so ask GP to do that or use Medichecks or Blue Horizon online labs fingerprick test.

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Do I need to test Ferratin levels if too high (over 300) Should I also lay off vitamin supplements as well as levo for blood test?

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See a different GP at the practice urgently

Your vitamin results are terrible and need treating correctly and you need 25mcg dose increase in Levothyroxine

Dire vitamins MUST be treated urgently

B12 is extremely low and needs full testing for Pernicious Anaemia before starting on B12 injections

Folate is even worse and should be supplementing with folic acid - but not until AFTER first loading B12 injections

Post about Loading doses of B12

healthunlocked.com/pasoc/po...

Vitamin D needs loading high dose. 800iu is only a maintenance dose, completely inadequate for severe deficiency

Look up you local CCG guidelines on vitamin D deficiency

Eg Oxfordshire

oxfordshireccg.nhs.uk/profe...

Ferritin is also too low and needs ferrous fumerate supplements

Detailed supplements advice on Low vitamins due to under medication

healthunlocked.com/thyroidu...

Your antibodies are high 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

Essential to test vitamin D, folate, ferritin and B12. Always get actual results and ranges. Post results when you have them, members can advise

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...

Persistent low vitamins with supplements suggests coeliac disease or gluten intolerance

gluten.org/resources/health...

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I have a tsh of 1.1 and feel no better. Blood test in morning.

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Meant to say am on 75mcg of levo and don't have Hasimotos,

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You need to start your own thread.

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Your vitamin test results are very low and far from optimal. Though I am not a professional or expert, I just wanted to reassure you that there are many of us with thyroid problems with depleted vitamin levels and until you address them your thyroid will struggle. I was like you and had 17.9 deficient in Vit D back in December but with the help of the Vit D Deficiency and Treatment Group on Facebook, I have managed to get my levels up to 165nmol and feel so much better. More energy, less pain, good sleep etc. Also was low in Ferritin (Dr said normal) I have been taking Spatone daily and have made more improvements, headaches have reduced. I couldn't get on with Drs iron supplements as they caused constipation but have no problems with Spatone which I mix with Orange juice or prune juice. The NHS ranges are so wide, you are at the bottom of the range and I have heard that to get it to 70 would improve things greatly.. It's a journey for most of us but we all need to do more than just exist. The advice from admin here is excellent and I hope that what I have shared with you inspires you to explore further so you can get some control over your health. 😊

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