Doctor told me I’ve been getting too much thyroxine. I used to take 50 once a day, I started getting palpitations - so she lowered the dose and told me to take one every other day, which I’ve been doing but I’m starting to feel unwell, I feel sick all the time, I’ve got headaches, extreme tiredness, I could still be tired after I wake up, I just feel generally rubbish.
Please help, what do I do from here? She doesn’t listen to me just tells me my results are normal, continue taking the dose every other day and have bloods tested in three weeks, so I’ve got to sit and suffer for three weeks feeling unwell? Can anyone offer some advice it would be greatly appreciated.
Thank you x
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ChloeL934
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With a Dr who tells you to take Levo only on alternate days with no meds on the others, the best advice is to see a different Dr because she doesn't appear to know what she is doing. Thyroid management apart, she clearly has no idea about meds generally - you don't both reduce a dose and change the frequency in a single move, because you need to see the result of one change before making another, and reducing Levo by 50 mcg is too big a reduction, even if it wasn't reducing 50 to 0! So if she has reduced your 50 mcg to presumably only 25 mcg and you are taking it only on alternate days, that equates to only 12.5 mcg per day! Even the very young and those with cardiac issues are prescribed a higher initial dose than 12.5 mcg, and even the latter can achieve a daily maintenance dose of between 50 - 200 mcg daily! The 50 mcg you were previously taking is in any case, only a starter dose for someone under 50 yrs,, and it's very possible that your symptoms on that dose, were due to being under-medicated not over-medicated. It's not clear whether those results were before or after your dose reduction, but in either case, your FT4 level along with symptoms, is indicating a dose increase is required, although as you will know, it is the active hormone T3, that needs also to be tested because without it you can't know if you are effectively converting T4 to T3. Three weeks is too soon to be retesting after a change in Levo not least because it has a long half life. BTW the reference interval for FT4 looks unusual, are you sure that lower number is correct? So if it were me, I would not reduce the dose and would not yet go for that blood test, but instead would have a comprehensive set of tests carried out privately as so many of us do, to include FT3, FT4, TSH, TPO & TG antibodies, folate, Fertitin, Vit D, and Vit B12 - nutrition is important along side directly medicating the underactive thyroid - and meanwhile would arm myself with accurate data about properly interpreting test results and medicating an underactive thyroid, before making a new appointment with that Dr if changing Drs isn't possible.
You could refer your Dr to the BNF/NICE Levothyroxine dosing guidelines:
For Adult 18–49 years
Initially 50–100 micrograms once daily; adjusted in steps of 25–50 micrograms every 3–4 weeks, adjusted according to response; maintenance 100–200 micrograms once daily, dose to be taken preferably at least 30 minutes before breakfast, caffeine-containing liquids (e.g. coffee, tea), or other medication.
For Adult 50 years and over
Initially 25 micrograms once daily; adjusted in steps of 25 micrograms every 4 weeks, adjusted according to response; maintenance 50–200 micrograms once daily, dose to be taken preferably at least 30 minutes before breakfast, caffeine-containing liquids (e.g. coffee, tea), or other medication.
Thank you for your reply. I really appreciate it as I don’t understand it all and I get very confused. I’m on still on 50 at the moment but I’m taking it every other day, until my next appt. I was in hospital last week, and the doctor I saw there recommend I be referred, so he’s sent a letter to my GP. I have been told about private tests and I am looking into that, I’m also looking at different doctors xx
Two options, see different doctor or get full testing first AFTER 6 weeks on reduced dose and then see different doctor
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also extremely important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if Thyroid antibodies are raised
Have you had antibodies and vitamins tested? These can be tested NOW
But TSH, FT3 and FT4 need testing after 6 weeks on any new dose
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw).
Is this how you do your tests?
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
If 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.
Low vitamins are especially common with Hashimoto's. Food intolerances are very common too, especially gluten. So it's important to get TPO and TG thyroid antibodies tested at least once .
Standard starter dose is 50mcgs, Bloods should be retested 6-8 weeks after each dose change (or brand change in Levothyroxine)
The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many need TSH under one) and FT4 in top third of range and FT3 at least half way in range
All four vitamins need to be regularly tested and frequently need supplementing to maintain optimal levels
NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.
Also what foods to avoid (note recommended to avoid calcium rich foods at least four hours away from Levo)
Many people find Levothyroxine brands are not interchangeable.
Once you find a brand that suits you, best to make sure to only get that one at each prescription. Watch out for brand change when dose is increased or at repeat prescription.
Many patients do NOT get on well with Teva brand of Levothyroxine. Though it is the only one for lactose intolerant patients
Thank you for your reply. I Have been on 50 since November. I am looking into private test. I previously had antibodies tested and they were <1 ku/l (0-9)
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also extremely important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if Thyroid antibodies are raised or if left on small starter dose of Levothyroxine too long
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw).
Bloods should be retested 6-8 weeks after any change in dose of Levothyroxine
The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many need TSH significantly under one) and most important is that FT4 in top third of range and FT3 at least half way in range
All four vitamins need to be regularly tested and frequently need supplementing to maintain optimal levels
NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.
For most people: 50–100 micrograms once daily, preferably taken at least 30 minutes before breakfast, caffeine-containing liquids (such as coffee or tea), or other drugs.
This should be adjusted in increments of 25–50 micrograms every 3–4 weeks according to response. The usual maintenance dose is 100–200 micrograms once daily.
Always take Levo on empty stomach and then nothing apart from water for at least an hour after.
Many take Levothyroxine early morning, on waking, but it may be more convenient and possibly more effective taken at bedtime.
Other medication at least 2 hours away, some like HRT, iron, calcium, vitamin D or magnesium at least four hours away from Levothyroxine
Many people find Levothyroxine brands are not interchangeable.
Once you find a brand that suits you, best to make sure to only get that one at each prescription. Watch out for brand change when dose is increased or at repeat prescription.
Many patients do NOT get on well with Teva brand of Levothyroxine. Though it is the only one for lactose intolerant patients
There is no evidence in those results of taking too much thyroxine - your free T4 is not even high in range. You probably needed an increase, not a decrease as palpitations are often caused by low T3 (you don't have a free T3 result) and decreasing your levo will lower your T3 and make you feel worse - as you do.
Thank you for replying. Can I get the T3 tested through my doctor or should I get that done privately. I’m going to see the doctor in a few weeks so I am going to ask about the increase. X
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