Just had repeat bloods taken again after G.P. not happy with last lot taken 3 months ago.
As I suspected they want to lower my dose from 100Mg to 75Mg, even though I actually feel undermedicated and do not have any symptoms of over medication.
I have already reduced my dose just over 12 months ago from 125Mg so this second reduction will be significant, especially as I weigh 75Kg and by my calculation and N.I.C.E guidelines I should be receiving 125Mg anyway (if my maths are correct).
I have posted the results below. I know they are the standard and incomplete NHS lab tests and do not show T3. I will follow up with private lab tests myself but would be interested in comments.
I know that I have inherited the polymorphism DIO2 gene (heterozygous) and wonder if it could be a conversion issue?
Lab tests done at 11:15 a.m. which was the earliest appointment I could get and even so I waited 3 weeks for appointment. Fasted beforehand and no levo for over 24hours prior.
The G.P. is ringing me later today to discuss and no doubt say that they are recommending dosage reduction.
Thyroid function test
Serum TSH level < 0.05 mu/L [0.3 - 4.5]
Outside reference range
Serum free T4 level 25.1 pmol/L [10.0 - 22.0]
Outside reference range
Consistent with levothyroxine over replacement.
May require T4 dose reduction.
Repeat in 3 months.
Thoughts/comments welcome
Written by
ATVMWF
To view profiles and participate in discussions please or .
Do you always get same brand of levothyroxine at each prescription
Refuse to reduce dose based on just TSH
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
Low vitamin levels extremely common when dose levothyroxine is reduced
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)
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
The G.P. was late with phone call back but has agreed to speak to senior partner about referring back to endo, or retesting TSH/FT4/FT3. In the meantime, no reduction in dose, which is a relief.
In response to your query; I do have Hashimotos and take several supplements. I currently take 1600IU Vit D daily and Natures Best Selenium 200Ug.
Levo is Accord and I always insist on same brand. I was taking folic acid but last time I had levels done via Medichecks they were in top of range.
I told her I have DIO2 heterozygous gene and it was diagnosed via Medichecks. She asked a few questions about why I felt the need to go to a private lab for this.
As I have said to SeasideSusie, I also have Sjogrens, which 'aint a bundle of fun and makes it very hard to distinguish what is thyroid and what is SS!
Going to see what doc comes back with and will take it from there but I am mighty relieved not to have to reduce my dose, especially when I am sitting here with thick woolly socks on and hubby is in shorts!
Once again, thanks to you wonderful people for offering support and advice.
So as you have Hashimoto’s it’s essential to regularly retest vitamin D, folate, ferritin and B12
1600iu is not a high dose vitamin D for someone with Hashimoto’s. You may need higher dose, important to test vitamin D at least annually, ideally twice year when supplementing
When was vitamin D last tested
Do you also supplement magnesium
When were folate, ferritin and B12 last tested
Frequently necessary to test privately as NHS often won’t test more than once every 2 years...
Just read below in reply to SS that you are already on strictly gluten free diet
Gluten intolerance is another good Indicator that you’re likely to need T3 prescribed alongside levothyroxine
Sorry just replied to SeasideSusie, I made a mistake, apologies for confusion caused. When I rechecked it was Regenerus that ran the labs for the faulty DIO2 gene. My memory and concentration is absolutely shot!
Also doublechecked some of my blood tests and they definitely need redoing. Ones done my G.P. via NHS were March last year but not the full list as NHS and prior to that mine done via Medichecks were late 2019. Obviously, Covid and family issues have diverted my attention and I need to refocus on my thyroid health issues again. I have been having so many problems with Sjogrens and trying to get appointments for that condition that thyroid has take a bit if a backseat. I will be making this top priority again over the next couple of weeks. I will try and find someone local to do blood draw after a pretty yuk time trying to use those fingerprick thingies-shudder!
I will also up my intake of Vit D from the 1600iu daily as per your suggestion that Hashimotos sufferers generally require a higher intake. I'll increase to 2200iu (that will be 3x800iu tablets daily) and see what effect that has.
I do have some Magnesium tablets but stopped taking them as I always felt a bit sickly after taking them but that could just have been a coincidence so will try them again. They were Nu U Neuro Night Complex because at the time I was having an awful time sleeping and was only getting an average 3 hours per night and was desperate for anything that would help me sleep.
I also forgot to mention that once a day I take 1000Ug Vit B12 (Health Aid).
With all this and other meds I take I fairly rattle along and the spacing out so they don't interfere with one another can be a challenge in itself...haha!
I will see what G.P. come up with but I am seriously considering contacting a private endo once I get my next SS appointment at the end of June out of the way and see what treatment they are going to come up with as well. Up to now Rheumatology has been even worse than any endo's I have come across and that is saying something...
Thanks for great advice. Will let you know how things progress
So you have a false low FT4 result, 24 hours is the time gap we need.
Your FT4 result is over range, if it was done with the correct time gap it would be even higher. So that result does suggest overmedication.
However, it's impossible to say without an FT3 result. As you have the faulty gene your conversion will be poor and your FT3 result will very likely be low.
You should not have a dose reduction based on these results alone. Does your GP know about the DIO2 test and the faulty gene? I would suggest that you ask your GP to ensure the test is repeated and includes the FT3 test as well as TSH and FT4 and refuse to reduce dose based on this current result.
I weigh 75Kg and by my calculation and N.I.C.E guidelines I should be receiving 125Mg anyway (if my maths are correct).
That is not set in stone. The guidelines suggest this as one method for a starter dose, and clearly states that monitoring is required to determine an adequate dose. If every doctor interpreted it as they must dose by weight then there could be an awful lot of over medicated as well as undermedicated people.
The dose of levothyroxine (LT4) should be individualized on the basis of clinical response and thyroid function test (TFT) results. Treatment must be monitored regularly to determine an adequate dose and to avoid both under- and over-treatment.
The NICE clinical guideline recommends:
Consider starting LT4 at a dosage of 1.6 micrograms per kilogram of bodyweight per day (rounded to the nearest 25 micrograms) for adults under 65 years of age with primary hypothyroidism and no history of cardiovascular disease.
Hi SeasideSusie,Just spoken to one of the junior doctors at my surgery. She was OK tbf
She agreed that I should not reduce my dose and she is to talk through options with senior partner.
Likely they will retest including FT3/TSH/FT4 and as I mentioned about the faulty DIO2 gene test, she questioned me quite a bit on, how it was done and why. She had plainly never heard of Medichecks and queried why I would use private testing in the first place. She most possibly will refer me back to see an endo as I have not seen one since 2016 and prior to my DIO2 diagnosis. Truthfully, I don't care for the local endo, he is a bit of pain in the backside but needs must.
I take onboard your point about the NICE weight guidelines and that they should only be used as a starting point and in conjunction with testing and clinical judgement.
I know I have Hashimoto's (that is a query from SlowDragon who I know is very knowledgeable on what supplements to take). I currently take 1600IU Vit D daily and Natures Best Selenium 200Ug.
Levo is Accord and I always insist on same brand. I was taking folic acid but last time I had levels done via Medichecks they were OK.
I went gluten free 2 years ago and my stomach issues have greatly improved and I want to thank the advice given on this forum for that, just wish I had done it years ago.
I also have Sjogrens syndrome which certainly complicates matters as it is hard to tell what is causing the fatigue, brain fog, dry eyes and sleep issues.
I told doctor the thought of reducing my dose filled me with absolute horror and that I am not exhibiting any hyper symptoms, in fact, quite the opposite. I have gained about 18Llbs in weight in the last 10 months, despite eating a fraction of my husbands food consumption and even though it is warm today (19C) I am sitting here with woolly socks on!
Even though I consider myself pretty well clued up on thyroid issues and read this forum for tips and tricks on keeping healthy, on current thinking and research and generally to keep abreast of all the great advice, I still needed to validate that what I thought may be an issue (possible conversion issue and FT3 defo needs checking), I find it is always better to get those more knowledgeable on the subject to check out results, just in case.
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.
Latest thyroid test results
Very odd results...
Sorry another query on test results
Blood test results , help please ? 
New labs - can anyone interpret pls?
