I'm new to healthunlocked and was diagnosed with Hashimotos disease and hypothyroidism Nov 2021. I am a 62 year old lady.
I started taking levothyroxine 50 mcg daily the beginning of December 2021, my GP arranged for me to have a repeat TSH after 8 weeks which was in the normal range 3.41mU/L, (0.35- 5.50) I requested to have my T3 and T4 levels checked but they refused.
I spoke to my GP last week to ask if they would increase my dosage because, I still had a lot of symptoms. They would not increase the dose as my TSH was in normal limits. I did
18 months ago I was very active road cycling 3-4 times a week and had a good quality of life.
I now feel my quality of life has deteriorated significantly, spending a lot of time feeling exhausted , fatigue, breathlessness, weight gain just a few of my symptoms.
Recently I had private blood tests- CRP 0.65mg/L (range 0-5)
Ferritin 135.00 ug/L (range 13-150)
Folate Serum 3.55 ug/L (range > than 3.89)
Vitamin B12 active 51.100 pmol/L (range 37.5- 188)
When quoting results of blood tests we also have to put the ranges. Ranges are in brackets and different machines can give different ranges and it permits members to give a proper response.
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Just in case you are unaware, this is the procedure to follow when having a blood test for thyroid hormones.
1. It is a fasting test but you can drink water and make the earliest possible blood draw.
2. Don't take thyroid hormones before test but take afterwards.
3. Also ask GP to test B12, Vit D, iron, ferritin and folate at next blood draw as everything has to be optimal. A very low B12 for instance could mean developing/devolped pernicious anaemia and if we have P.A. we need regular injections.
thank you shaws, I have added the ranges to the blood tests, my blood tests where taken 09-00hrs as a fasting test and I did not take my thyroid hormones until after the test.
Request/politely insist on 25mcg dose increase in levothyroxine and bloods retested 6-8 weeks later
Which brand of levothyroxine are you currently taking
Was this test done as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test?
High thyroid antibodies confirms autoimmune thyroid disease also called Hashimoto’s
NICE guidelines are clear that anyone newly diagnosed with Hashimoto’s should have coeliac blood test done
Have you had coeliac test yet?
TSH should be under 2 as an absolute maximum when on levothyroxine
Replacement therapy with levothyroxine should be initiated in all patients to achieve a TSH level of 0.5-2.0pmol/L.
NHS England Liothyronine guidelines July 2019 clearly state on page 13 that TSH should be between 0.4-1.5 when OPTIMALLY treated with just Levothyroxine
Note that it says test should be in morning BEFORE taking levothyroxine
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
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.
Thanks SlowDragon, I am taking Accord levothyroxine 50 micrograms,
my blood tests where done 09-00hrs before eating or drinking and 24hrs after my last levothyroxine test
I have not been offered a coeliac test but will ask for one
thank you for the info re vitamin D, vit B12 active and folate, I will start adding supplements one at a time with a 10-14day gap before adding another and I have just added my ferritin .
I will arrange to see a different GP and push for a dose increase,
Vitamin D mouth spray by Better You is very effective as it avoids poor gut function. There’s a version made that also contains vitamin K2 Mk7. One spray = 1000iu
Thorne Basic B or Jarrow B Right are recommended options that contains folate, but both are large capsules. (You can tip powder out if can’t swallow capsule)
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a B12 supplement as well as a B Complex (to balance all the B vitamins) initially for first 2-4 months, then once your serum B12 is over 500 (or Active B12 level has reached 70), stop the B12 and just carry on with the B Complex.
Hi you have received some excellent advice. I like you was left on 50mcg for 18 months as doctor said my TSH was now in range at 2.6, Eventually my TSH rose to 4.2 top of range 4.5 and they still said I was in range and I felt awful.I joined this forum and received the same excellent advice you have. I then saw a different doctor armed with all info. and they agreed to a dose increase. I presently take 125mcg and if the doctor panics about my suppressed TSH I politely tell them I do not want to decrease my dose as symptoms will return and they agree to leave me on my present dose. Good luck.
I'm surprised at your Dr. When I started levo last year I was told at my surgery that NHS clinical guidance is to get TSH under 2.5 and T4 top of range, particularly if the patient still has symptoms. Why are so many Drs not following this guidance I wonder?
Why are so many Drs not following this guidance I wonder?They usually won't have seen it, there are several little snippets here and there advising GP's to keep TSH under about 2 ish , but you wouldn't find them unless you were looking really hard to find them . (like we do )
The main pages of the thyroid disease guidelines that they will have immediately to hand on their computer just say "Get TSH 'into range' to see if symptoms improve"
You're 'lucky' to have been seen by a surgery who had already been 'enlightened' to some of the finer points of treatment .
Yeah, it was actually the clinical pharmacist who seemed so knowledgeable and enlightened. I'm worried though as he's about to leave and certainly the GP who I first saw knew little but to her credit had rung 'someone very senior (?)' at the hospital for advice. Now she's left. Very worried who I'll get now.
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