I am due to see a new endo next week for a routine follow up appointment. don't know what happened to the last one but she is no longer at the hospital.
I have already taken treatment into my own hands and I am currently experimenting with 25mcg only of T3 but as I have the appointment I might as well try one more time to get the NHS to increase the current recommendation for me of no change to my 25mcg Levo dosage (50mg on Sat/Sun)
Just to make it clear I don't take my Levo prescription anymore and my endo is currently unaware of this. I am only 4 weeks into the T3 only and it is going ok so far but blood tests in 2 weeks will give me more info.
My last test was about 3 for TSH and free T4 of 10.9 and free T3 of 4.8 on Levo only and she recommended that this should mean no change to my Levo prescription. This was why I am currently treating myself.
My question is can anyone recommend a very short paragraph or quote from a prominent endo or recognised expert that states that a treated TSH should be about 1?
I have taken pages in to see doctors and endos before but they are not interested in reading them so I just want a short powerful statement that I can get them to read. Anything longer than 10 lines will simply be ignored from previous experience.
Written by
hankpym
To view profiles and participate in discussions please or .
It must depend on what endo you see...I had my first appointment recently, took loads of test results and info and he looked at the lot, understood that I had at least a working knowledge of my condition and agreed a treatment plan! I hope you have a good appointment 👍🏻
Clearly the last endocrinologist was not a thyroid specialist and left you woefully under medicated
On Levothyroxine TSH should be under 2, and FT4 towards top of range. You were in need of 25mcg dose increase in Levothyroxine with bloods retested 6-8 weeks later
May well, have just needed slow dose increases in Levo
Levothyroxine should be increased in 25mcg steps until TSH is around one and FT4 towards top of range and FT3 at least half way in range
On Liothyronine your TSH will almost certainly be completely suppressed. FT4 may well be below range.
Most patients on T3 also take Levo as well.
You will need to be honest, on what you are now taking.
Essential to test vitamin D, folate, ferritin and B12 levels
New NHS England Liothyronine guidelines November 2018 clearly state on pages 8 & 12 that TSH should be between 0.4-1.5 when treated with just Levothyroxine
Note that it says test should be in morning BEFORE taking Levothyroxine
If this is a private consultation then strongly recommend you get FULL Thyroid and vitamin testing BEFOREHAND
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 Thyroid antibodies are raised
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. Last Levothyroxine dose should be 24 hours prior to 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)
If/when also on T3, make sure to take last dose 8-12 hours prior to test Even if this means adjusting or splitting dose differently on day before test
Is this how you do your tests?
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
Where all other treatment options have been exhausted. This is carefully worded and gives the doctor an opportunity to suspect other causes and thus deny treatment until they see fit.
To have left anyone on such a small dose of Levothyroxine was unforgivable
Any dose of Levothyroxine tends to reduce our own thyroid production because TSH lowers. Then your own thyroid production takes a holiday. You end up with less thyroid hormones available than before Levothyroxine was started
It doesn't "add 25mcg" to our own thyroid's daily output.
That's why NICE guidelines recommend minimum of 50mcg-100mcg and initial starting dose
For most people: 50–100 micrograms once daily, preferably taken at least 30 minutes before breakfast, caffeine-containing liquids (such as coffee or tea), or other drugs.
* This should be adjusted in increments of 25–50 micrograms every 3–4 weeks according to response. The usual maintenance dose is 100–200 micrograms once daily.
Is this a recommended thyroid specialist You are seeing from Thyroid Uk list? Or just a "run of the mill" NHS endocrinologist (frequently only Diabetes specialist and clueless on Thyroid)
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)."
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
Suggest you also request list of recommended thyroid specialists too
I have got all that info before from all the helpful people on here. I will take in the clips from Dr Toft and also the new NHS guidelines. After all this is a new NHS endo so maybe she is more open minded than the last one and will actually spend 2 mins reading it. I doubt it, I have done my due diligence and looked her up and she is a diabetes specialist like the last one was.
It is all worth a go but to be honest I am committed to working out my own treatment. I am on 25mcg T3 only at the moment and I will see what 4 weeks on that does to my levels - I feel ok but there has been no change at all in my morning oral 35.8 c temperature.
If the T3 does not work then I might try a 6 week trial on Thyroid S 1 grain a day and see what that does to levels and how I feel.
Well that was fun. The new endo was a man I had not seen before and his opening statement was “so I understand you want a change to your thyroid treatment, as you are now firmly in range do you want to stop taking Levothyroxine?”
I said I wanted an increase and tried to show him the statements from Dr Toft and the Nov 18 article but he dismissed them out of hand, he said he was willing to carry on with my current dose but will no way agree to an increase.
Waste of time as usual and I will carry on self prescribing.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Advice before Endo appointment
First endo appointment next week...what should I be asking for?
Preparing for Endo appointment, new blood tests with lower TSH
Great first endo appointment
Worried about endo appointment
