On same dose of Levothyroxine for over 30 years????

[Seaside3]

Hi - I have been on the same dose of Levothyroxine for over 30 years ad am feeling fatigued most of the time - I am on a keto diet so am reversing my pre-diabetes status and also have arthritis but losing weight - so thats good - but feel I would benefit from reducing my dosage of 100 units daily - as I am in the 'range' but really fail to understand why being either at the top of the 'range' or the bottom - makes no difference (according to my GP - t is just enough to be in the 'range') any suggestions/ideas gratefully requested - thanks

[Jaydee1507 Administrator]

Welcome to the group. If you could complete your profile it helps members understand your thyroid journey so far and offer recommendations better. Click on your image icon to start.

What members here have found is that they need to get key vitamin levels to OPTIMAL (not just 'in range) for their thyroid hormone to work well.

There are also 15-20% of thyroid patients who don't convert levothyroxine (t4) to T3 which is the active hormone. The NHS rarely if ever tests FT3 though so it is left to us patients to pay for private tests to work out why we don't do well on just Levo.

Do you have a copy of your latest blood results that you can share with us? You are legally entitled to a printed copy of your results, ask at GP reception. In England you can get the NHS app and ask for permission to see your blood results on that by asking at GP’s reception.

It's ideal if you can always get the same brand of levo at every prescription. You can do this by getting GP to write the brand you prefer in the first line of the prescription. Many people find that different brands are not interchangeable.

When hypo we get low stomach acid which means we cannot absorb vitamins well from our food, regardless of a great diet. For thyroid hormone to work well we need OPTIMAL levels of vitamins. Have you recently or could you ask your GP to test levels of ferritin, folate, B12 & D3? Private tests are available, see link for companies offering private blood tests & discount codes, some offer a blood draw service at an extra cost. thyroiduk.org/help-and-supp...

There is also a new company offering walk in & mail order blood tests in London, Surrey, Sussex, Kent areas. No charge for blood draw in clinic. Check to see if there is a blood test company near you. onedaytests.com/products/ul...

Only do private postal testing early Monday or Tuesday morning.

Do you know if you had positive thyroid antibodies? Many with autoimmune thyroid disease aka Hashimoto's benefit from a gluten free diet. A smaller percentage of those also need to remove dairy from their diet to feel well. These are intolerances and will not show up on any blood test. It’s worth trialling a strictly gluten free diet to see if it helps symptoms.

Recommended blood test protocol: Test at 9am (or as close as possible), fasting, last levo dose 24hrs before the blood draw & no biotin containing supplements for 3-7 days (Biotin can interfere with thyroid blood results as it is used in the testing process)? Testing like this gives consistency in your results and will show stable blood levels of hormone and highest TSH which varies throughout the day. Taking Levo just prior to blood draw can show a falsely elevated result and your GP/Endo might change your dose incorrectly as a result.

[Seaside3 in reply to Jaydee1507]

Hi - thanks for all the info - I feel like I am at the stsrt of a long journey - but as it is towards better health - first steps and all that - regards Seaside3

[Jaydee1507 Administrator in reply to Seaside3]

Get the blood testing done and come back with a new post.

[SeasideSusie Remembering]

Seaside3

Without seeing full blood results with ranges it's hard to comment. TSH, FT4 and FT3 are needed to get a full picture of thyroid status.

but feel I would benefit from reducing my dosage of 100 units daily

What makes you think that? If you're feeling fatigued most of the time that could suggest that you're undermedicated and would need an increase in dose not a reduction. It could also mean that your key nutrients are low or deficient - have you tested those?

If you want to try reducing your dose then just do it, don't ask permission from your GP or ask for your prescription to be reduced, if you do that and you then find you need to go back up to 100mcg then it may be very difficult to get your original dose reinstated. So if you do try it then before doing so get full thyroid and vitamin testing

TSH

FT4

FT3

Thyroid antibodies

Vit D

B12

Folate

Ferritin

Stay on any new dose for 6-8 weeks then retest to see what difference it's made to your levels and how you feel.

Follow our advised protocol for testing.

Private tests are available and the three most popular companies are Monitor My Health (fingerprick test only), Medichecks and Blue Horizon (fingerprick or venous blood draw) and details plus discount codes here:

thyroiduk.org/help-and-supp...

[Seaside3 in reply to SeasideSusie]

Thanks for the info and suggestions - i shall follow up on that - regards Seaside3