I have been on 75mcg for about 9 years. Bloods not tested for 2 years. Have recently been feeling clammy weak, low blood pressure and now have mouth ulcers, swollen lips and tongue and struggling to eat. Could this mean my levels need checking?
Advice please: I have been on 75mcg for about... - Thyroid UK
Advice please
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Me2022
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8 Replies
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Certainly sounds like it. 75 mcg is only a tiny dose, not much more than a starter dose. Your bloods should have been checked six weeks after you started it, and your dose increased to 100 mcg. Your doctor is being negligent. I know there are difficulties at the moment, with COVID and one thing and another, but that doesn't mean that hypo patients should be left to suffer. 
Do you have TSH FT4 FT3 tested or just the TSH ? Do you have Hashimotos ?
Very important to test B12 - FOLATE - FERRITIN - VITD. Your symptoms could be LOW B12 as well as poor thyroid function.
Are you supplementing ? On any other medications ?
SlowDragonAdministrator
75mcg is only one step up from starter dose
What were thyroid and vitamin results 2 years ago
Do you have autoimmune thyroid disease also called Hashimoto’s diagnosed by high thyroid antibodies
What vitamin supplements are you currently taking
For full Thyroid evaluation you need TSH, FT4 and FT3 tested
plus both TPO and TG thyroid antibodies tested if not tested at diagnosis
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
Low vitamin levels are extremely common, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis) or if left on too low a dose levothyroxine
Autoimmune thyroid disease with goitre is Hashimoto’s
Autoimmune thyroid disease without goitre is Ord’s thyroiditis. Both are autoimmune and generally called Hashimoto’s.
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 and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
List of private testing options
thyroiduk.org/getting-a-dia...
Medichecks Thyroid plus antibodies and vitamins
medichecks.com/products/adv...
Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test
bluehorizonbloodtests.co.uk...
Come back with new post once you get results
I paid for a private test 2 years ago. At that time I wasn't asking Vit D and B12 supplements. Haven't taken B12 for over a year. My vitamin D and B12 levels were maximum levels. Ferritin 56.2, foliate 28.9, TSH 2.88, FT4 17.7, FT3 3.47, TPOAb 58, T4 80.5, TgAB 78.6 .
Going to ask GP for bloods but think they only do TSH and T4 plus will ask for FBC. (If I have problems I think I'll access a private test again.
TSH 2.88,
FT4 17.7
FT3 3.47,
TPOAb 58,
T4 80.5,
TgAB 78.6 .
Obviously these results are far too long ago …but they showed EXTREMELY Low Ft3
ALWAYS Test as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test
TSH too high
What’s the range on Ft4, Ft3 and TPO antibodies
Assuming
FT4 17.7 (12-22)
FT3 3.47, (3.1-6.8)
TPOAb 58, <34
Ft4 was 57% through range
Ft3 only 18% through range
Assuming test was done as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test
Most people when adequately treated will have Ft4 at least 60-70% through range and Ft3 at least 50% through range
So inadequate dose levothyroxine and very poor conversion of Ft4 to Ft3
High TPO antibodies confirms autoimmune thyroid disease also called Hashimoto’s
Have you had coeliac blood test done
Are you currently on strictly gluten free diet
SlowDragonAdministrator
How much do you weigh in kilo
guidelines on dose levothyroxine by weight
Even if we frequently 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 eventually on, or near full replacement dose
NICE guidelines on full replacement dose
nice.org.uk/guidance/ng145/...
1.3.6
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.
Also here
cks.nice.org.uk/topics/hypo...
gp-update.co.uk/Latest-Upda...
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.
BMJ also clear on dose required
Do you always get same brand levothyroxine at each prescription
Which brand?
Come back with new post once you get new test results from GP
I know it's an old post but just seen it. I've been on 75mcg of levothyroxine for a year now and have tests every 6 months. I keep expecting my dosage to be upped but they keep saying all's good. To be fair I'm feeling miles better than I was and my main symptom was severe brain fog which has almost gone but have odd days. Was just wondering did your doctor go into details as to why he was keeping you on 75mcg. Also do you suffer from brain fog?
I eventually got bloods done the second time I went to GP in April. When I rang to ask for results I was told everything was OK, so asked for a copy of results. 15 minutes later I got a call from GP to say TSH was raised and had meds increased to 100mcg. After 2 months finally feeling less fatigued and brain less foggy. TSH is now below 1. I now ask for copies of blood results each time. My ferrying is still quite low at 42 so starting to supplement iron.
