I've been on Thyroxine for about 5 years. My current dose is 75. My T4 has always been the low end of the normal range as has my TSH. The endocrinologist said that my I'm odd as the TSH isn't slightly elevated as he would expect but if the meds helps with the meds then carry on.
Unfortunately its stopped working and I feel like death. Exhaustion, nails splitting, hands shaking, weight gain, joint pain, sweating like I'm constantly in a sauna... New blood results including T3 this time and I could cry....
TSH:0.05 ( 0.2 - 5.5 miU/L)
FT4 : 17.8 (10 - 24.5 pmol/L)
FT3: 3 (3.1 - 6.8 pmol/L)
Anyone have any ideas or theories on what's going on?I do shift work and this destroying me.
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BlueLight87
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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 you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies
Do you know if you have Hashimoto’s?
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?
Your results show extremely low Ft3....likely to have very low vitamin levels
Low vitamin levels tend to lower TSH....hence why so important to test vitamins too
We frequently need to supplement some, or all of these virtually continuously to maintain OPTIMAL vitamin levels
Have you had any vitamin levels tested recently?
75mcg levothyroxine is low dose ....most people need at least 100mcg...
Unless you are very petite
Guidelines on dose by weight is 1.6mcg levothyroxine per kilo of your weight
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
Even if we don’t start on full replacement dose, most people need to increase levothyroxine 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.
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. Teva contains mannitol as a filler, which seems to be possible cause of problems. Teva is the only brand that makes 75mcg tablet. So if avoiding Teva for 75mcg dose ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half
Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).
Levothyroxine is an extremely fussy hormone and should always be taken on an empty stomach and then nothing apart from water for at least an hour after
Many people take Levothyroxine soon after waking, but it may be more convenient and perhaps more effective taken at bedtime
Likely to need dose increase in levothyroxine....not decrease...
The aim of levothyroxine is to increase dose upwards until Ft4 is in top third of range and Ft3 at least half way through range (regardless of where TSH is)
Extremely important to have optimal vitamin levels too as this helps reduce symptoms and improve how levothyroxine works
Email Dionne at Thyroid UK for list of recommend thyroid specialist endocrinologists...NHS and Private
tukadmin@thyroiduk.org
If your Ft4 is low in range you are under medicated and need dose increase in levothyroxine
I'm on vitamin D supplements but all other vitamins inc iron and cortisol came back normal.
I've always been on the same brand and take it on an empty stomach as I go to bed depending on if I'm on an early or night shift. I found first thing in the morning made me feel worse.
I'm definitely not petite- about 5ft9 and 11 st. The endocrinologist clinics aren't running at the moment so they wrote a letter authorising the free T4, T3 and TSH. My tsh or T3 has never been this low. I was only diagnosed with hypothyroidism not hashimoto's.
Make a note of all the things you wish to discuss with your medic and take it to your appointment......I found this helped prevent a stilted explanation for my visit.
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