Levothyroxine - saint or devil?

[ThyroidorMyoid]

Help please. I had thyroiditis some years ago (lost 2 dress sizes - great) but then went hypo. I was first prescribed levothyroxine 75mcg, later increased to 100mcg. However, since starting the meds, I became heat intolerant, gained far too much weight and am always exhausted (not menopausal - went through that years ago). I tried increasing the dosage myself but my blood tests sent my GP into panic mode so I'm back on 100mcg. Someone recently told me that levothyroxine could be the culprit but my GP hasn't suggested any alternatives. Any advice/knowledge please? Thank you.

[pennyannie]

Hello ThyroidorMyoid and welcome to the hormone :

Some years ago - were you prescribed an Anti Thyroid drug such as Carbimzole / PTU - diagnosed Graves - and given RAI thyroid ablation or did your thyroiditis resolve without any medical intervention and did you get a diagnosis of this what health issue you had/have ?

Can you please share with forum members your latest blood test results and ranges -

ideally these need to be a TSH plus a Free T3 and Free T4 reading and range.

T4 - Levothyroxine is a pro-hormone and needs to be converted in the body into T3 which is the active hormone which runs the body and we need to see the relationship between both these two vital hormones to understand and explain to you why T4 can be both a saint and a devil :

No thyroid hormone replacement works optimally until your core strength vitamins and minerals - those of ferritin, folate, B12 and vitamin D are up and maintained at optimal levels - so these may well be part of the issue -

also down regulation of T4 into T3 can happen because of inflammation, antibodies, any physiological stress ( emotional or physical ) depression, dieting and ageing.

So - there are a few things that need to be considered and we need more information to be able to help you get back on track again.

We generally suggest you have run a TSH + Free T3 + Free T4 blood test + the inflammation, antibodies and the vitamins and minerals as detailed - and if your doctor is unable to do this for you there are details of Private companies who can listed within the Thyroid UK website who is the charity who supports this patient to patient open forum.

Once with the results and ranges just start a new post with all the results and ranges and you will be talked through your next best steps back to better thyroid health.

thyroiduk.org

[Jaydee1507 Administrator]

Welcome to the group. If you could complete your profile it helps members understand your thyroid journey so far and be able to advise you better. Click on your image icon to start. Fill out the free text box at the top.

Its unlikely that Levo is the culprit for your ill health, more likely you either don't take enough of it, don't convert Levo (T4) to T3 well and/or your vitamin levels are too low for your body to be able to use your thyroid hormone well.

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.

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/testing/priva...

There is also a new company offering walk in& mail order blood tests in London, Kent, Sussex & Surrey areas. Check to see if there is a blood test company near you. onedaytests.com/products/ul...

Only do private tests on a Monday or Tuesday to avoid postal delays.

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.

Always take Levo on an empty stomach an hour away from food or caffeine containing drinks & other meds. Many people find taking it at bedtime works well for them.

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.

Do you do tests as per the protocol recommended here? 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/T3 just prior to blood draw can show a falsely elevated result and your GP/Endo might change your dose incorrectly as a result.