How much levothyroxine are you currently taking...Taking TOO SMALL a dose will cause symptoms
Levothyroxine doesn’t top up your failing thyroid...it replaces it
Even if we don’t start on full replacement dose...
Important to increase dose upwards as fast as tolerated
As you have been in medicated likely to have very low vitamin levels. Important to regularly retest vitamin D, folate, B12 and ferritin. These need to be optimal for good conversion of Ft4 to Ft3
Low vitamin levels frequently lower TSH and make it harder to get dose increase in levothyroxine, or to tolerate higher dose of levothyroxine
What vitamin supplements are you currently taking
Add vitamin results and ranges if you have any
guidelines on dose levothyroxine by weight
Even if we don’t start on full replacement dose, most people need to increase dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until on full replacement dose
Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.
Traditionally we have tended to start patients on a low dose of levothyroxine and titrate it up over a period of months. RCT evidence suggests that for the majority of patients this is not necessary and may waste resources.
For patients aged >60y or with ischaemic heart disease, start levothyroxine at 25–50μg daily and titrate up every 3 to 6 weeks as tolerated.
For ALL other patients start at full replacement dose. For most this will equate to 1.6 μg/kg/day (approximately 100μg for a 60kg woman and 125μg for a 75kg man).
If you are starting treatment for subclinical hypothyroidism, this article advises starting at a dose close to the full treatment dose on the basis that it is difficult to assess symptom response unless a therapeutic dose has been trialled.
A small Dutch double-blind cross-over study (ArchIntMed 2010;170:1996) demonstrated that night time rather than morning dosing improved TSH suppression and free T4 measurements, but made no difference to subjective wellbeing. It is reasonable to take levothyroxine at night rather than in the morning, especially for individuals who do not eat late at night.
Can see looking at previous posts you were left on ludicrously small dose of 50/75mcg alternate days
Email Dionne at Thyroid UK for list of recommend thyroid specialist endocrinologists
Just testing TSH and Ft4 is completely inadequate
As you have Hashimoto’s it’s highly likely you have poor gut function, low vitamins and as result very poor conversion of Ft4 to Ft3
The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many patients need TSH significantly under one) and most important is that FT4 is in top third of range and FT3 at least half way through range
NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.
Also note what foods to avoid (eg recommended to avoid calcium rich foods at least four hours from taking Levo)
All four vitamins need to be regularly tested and frequently need supplementing to maintain optimal levels
For full Thyroid evaluation you need TSH, FT4 and FT3 tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Ask GP to test vitamin levels
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Is this how you do your tests?
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
Thyroid levels should be tested 6-8 weeks after each dose increase in levothyroxine
You likely are ready for next dose 25mcg increase in levothyroxine
Have you had blood tested? If not get it done ASAP including all four vitamins too
Come back with new post once you get results
If taking any supplements that contain biotin (eg vitamin B complex) remember to stop taking a week before ALL Blood tests as biotin can falsely affect test results
Most Hashimoto’s patients need to supplement vitamins virtually continuously to maintain optimal vitamin levels
I've had very similar problems to you on levothyroxine....I could't tolerate Teva, Eltroxin either and also took myself off meds for 4-6 weeks at one point.
I now take Accord (used to be called Actavis) and it doesn't seem anywhere near as bad as the others.
I started taking levo again after my Sister informed me that without it all my main organs would pack up.
I know it feels like 'poison' with all horrid side effects!!
Somehow! Having optimal levels of Vitamin D and B12 helps
John for over 3 years I felt awful on levothyroxine. My results were normal according to the doctors. In the end I decided it was the levo that made me feel ill. I was on 100mcg. Over months I cut down to 25mcg per day. For 3 months I felt great. Then the anxiety stared and the other hypo symptoms kicked in. I became very ill.
Now I know better I realise that I was always undermedicated and tha the so called normal results were not the right normal ones for me. I went back slowly to 100mcg levo. Then I was able to show that although tsh and ft4 were in range my Ft3 was low. This had been causing my symptoms all along not the levo.
I am now on a combo of levo and lio and doing better.
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