TSH currently at 3 from a high of 16 a few years ago. I’m 35 and male, BMI is mid 30s and rising. My consultant has suggested a trial of T3 to see if it helps but said my GP may choose not to allow me to have it in perpetuity because of cost.
Anyone had any experience of it? Did you feel better? Did it help the weight go dow lb and fatigue lessen?
All feedback appreciated.
Liothyronine (L-T3) will p[robably help but with a TSH of 3 you are probably a little undermedicated. Do you have your blood test results with the reference intervals (numbers in brackets)? It would help to have TSH, fT3 and fT4 measured if they haven't been, you can get a reasonably cheap home test kit here thyroiduk.org/help-and-supp... .
I never get told numbers because the GP Never bothers to ring. You get a receptionist saying ‘everything is ok’ most of the time. The only one I got was TSH
Frequently only TSH is tested
Obviously that's completely inadequate
You are legally entitled to copies of blood test results and ranges
Register for online access to your medical records and test results
Or if not available online ring reception and request printed copies of results...then go pick up 2-3 days later
How much levothyroxine are you currently taking Do you always get same brand of levothyroxine at each prescription
Previous post from 2 years ago you were only on 75mcg levothyroxine
What’s the range on Ft4 result (figures in brackets after result)
If Ft4 is 12-22 your Ft4 at 16 is only 40% through range
Most people when adequately treated will have Ft4 at least 60-70% through range
When were vitamin D, folate, ferritin and B12 last tested?
What vitamin supplements are you currently taking
Do you know if cause of your hypothyroidism is autoimmune thyroid disease also called Hashimoto’s diagnosed by high thyroid antibodies?
Don’t know what levels on anything other than TSH are, nobody has ever told me the ‘cause’. I just get told I’m subclinical
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
bestpractice.bmj.com/topics...
Increase in levothyroxine is always first step as results suggest you are under medicated
Essential to maintain OPTIMAL vitamin levels for levothyroxine or T3 to work well
T3 is more difficult to manage than just Levothyroxine
At moment you’re likely under medicated rather than in definite need of T3
T3 must always be initially prescribed via NHS endocrinologist via hospital pharmacy for first 3-6 months
Previous post shows you had low B12 and vitamin D
Are you still On B12 injections
Do you also supplement daily vitamin B complex
Approx how much do you weigh in kilo
They stopped my B12 injections as they said ‘it was now at an adequate level’. I currently take 100 μg levothyroxine daily, and Fultium D3 800 IU daily. That’s it. I’m 181cm and weight is 113kg
Ask GP for 25mcg dose increase in levo
Bloods retested 6-8 weeks after any dose change or brand change in Levothyroxine
Clearly at 113 kilo X 1.6 shows you are likely to need further increases in levo
You need to test vitamin D, folate, ferritin and B12 at least once year
Many thousands of UK thyroid patients forced to test privately to make progress
Suggest you get FULL thyroid and vitamin testing done via Medichecks 6-8 weeks AFTER you get dose increase up to 125mcg levo
Essential to always take levo on empty stomach and then nothing apart from water for at least an hour after
Always get all thyroid tests as early as possible in morning before eating or drinking anything apart from water and last dose levothyroxine 24 hours before test
Have you got the range on FT4 result? (Figures in brackets after result)
113 X 1.6 = 180mcg as the likely daily dose levothyroxine required
Now you will need to increase dose SLOWLY upwards over several months
You might find you can't tolerate that high a dose ....then would likely need T3 added instead
But at moment you are on only just over half the recommended dose ....so first step is to get dose increase in levo
Test vitamin levels at next test (privately if GP won't)
Find out if you have high thyroid antibodies at next test too
Vitamin D at 800iu is highly unlikely to be large enough dose
Aiming for vitamin D at least around 80nmol and around 100nmol may be better
Vitamin D should be tested 2 X year when supplementing
NHS will only test once every two years
Thanks for the helpful and thoughtful response. I appreciate it. Lots to consider here. It would be nice if this level of support was given by the medical professionals...
The thing I struggle with is how you don’t get given test results as standard.
Is there any list or template somewhere of metrics I should be monitoring ?
TSH should be under 2 as an absolute maximum when on levothyroxine
gponline.com/endocrinology-...
Replacement therapy with levothyroxine should be initiated in all patients to achieve a TSH level of 0.5-2.0pmol/L.
New 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
Also to test vitamin D, folate, B12 and ferritin
sps.nhs.uk/wp-content/uploa...
Aim is to bring a TSH under 2.5
UK guidance suggests aiming for a TSH of 0.5–2.5
gp-update.co.uk/SM4/Mutable...
Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,
"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.
In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.
Most patients will feel well in that circumstance.
But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.
This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."
(That’s Ft3 at 58% minimum through range)
You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor
please email Dionne at
tukadmin@thyroiduk.org
NHS standard testing and treatment is frequently inadequate
When hypothyroid we frequently have low stomach acid as direct result. This leads to poor nutrient absorption and low vitamins as direct result
So it’s often necessary to supplement virtually continuously to maintain optimal vitamin levels
On levothyroxine it’s extremely important to have OPTIMAL Vitamin levels
Vitamin D at least around 80nmol and around 100nmol maybe better
Folate and ferritin at least half way through range
Serum B12 at least over 500
Active B12 at least over 70 (private test)
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
bestpractice.bmj.com/topics...
Thank you so much for all of this. It’s so good of you to take the time and effort to helo so much. I’ll try to process this and make a plan.
Suggest you see /contact GP for 25mcg dose increase in levothyroxine
Plus getting all four vitamins tested by GP...or test with full thyroid tests after 6-8 weeks on higher dose levothyroxine
I hope they checked for Pernicious Anaemia before stopping the B12 injections. Many of us might have a low B12 and should always double-check it is not due to pernicious anaemia.
febstar,
Are you still medicating Levothyroxine at present?
There are many influences on thyroid physiology but the basic requirements in making Levothyroxine work are an adequate dose that keeps TSH around 1 or below, optimal iron and nutrient levels (particularly VitB12, folate & Vit D), sufficient & balanced cortisol, and thyroid antibodies kept below inflammatory levels.
Then theoretically we should gain well-being but some don't, and it is known a small subset of people with hypothyroidism have an impairment on the deiodinase 2 gene preventing good conversion of T4-T3.
This means no matter how much Levothyroxine they medicate they will never function to their best because it is only the T3 (that is the active hormone) that can give their body energy to achieve well-being. In this instance adding a little bit of T3 to Levothyroxine has made many members (including myself) feel well, only to have their T3 supply abruptly stopped when GP's aren't cooperative in continuing the care, or CCG's say T3 isn't needed.
In some instances members have carried on medicating T3 with either private prescriptions or by sourcing it themselves from abroad with the help of other members.
Of course if the fundamental requirements above haven't been met then there is always the risk of no matter what you medicate or how much, it isn't going to work and make you better.
My last TSH was taken in November and was around 3. I take 100μg a day. 181cm tall, 113kg. I take daily vitamin d. That’s all.
febstar,
100μg Levothyroxine is a fairly smallish standard dose. Many need much more to achieve euthyroid status, and function well on TSH of 1 or below.
As others have already pointed out above it is impossible to assess thyroid hormones levels without comprehensive testing & when GP's are uncooperative, members use private labs.
.
I would also point out I have a benign pituitary adenoma. Not the one that kicks out hormones.
I would definitely take the offer of T3 trial if offered. It is the 'active' thyroid hormone needed in our billions of T3 receptor cells, brain and heart have the most.
I take T3 alone - not for a weight reason but T4 is inactive and has to convert to T3. So T3 only goes directly into our T3 receptor cells. The aim is a TSH of 1 or lower with both Free T4 and Free T3 in the upper part of the ranges.
T4 and T3 levels dropping
SWITCHING FROM T3 TO T4/T3
Help needed with t3/t4
Rundown of TSH, T3, T4
How to add in T3 With T4
