I became hypothyroid in 2015, I was treated and have been on 100mg levothyroxine for the last few years. I struggled with usual symptoms of fatigue etc and yearly blood tests in 2018 revealed low Vitamin D so I have been on that protocol and increased my Vit D levels significantly.
But I was still high for TSH and still had some fatigue etc, so I wanted to lower my TSH further to see if that helped (from research on this site, thank you all!). So I asked to increase my dose in February but was told I needed to decrease instead and went onto 100mg/75mg alternate days. I was confused and went along with it but certain symptoms particular to me have returned and Medichecks results show no drop in TSH is happening, actually increasing!
Has anyone had similar problems or might it be something to do with Vitamin D levels?
Or should I actually have gone onto a higher dose?
Blood results on images – or I can type in… This years results are all done fasting with no levo for 24 hours prior to testing as suggested here.
Many thanks!!
Written by
Joat_the_cat
To view profiles and participate in discussions please or .
On which thyroid results did your GP base her decision to reduce your Levo to 100/75mcg? You mention February but I can't see any thyroid results for February.
For B12, I would use the Active B12 result by Medichecks as that tests the amount of B12 that is available to be taken up by the cells (Serum B12 is the total amount of B12). Anything below 70 suggests testing for B12 deficiency, I can't quite make out your level but it seems to be in the 60s.
Reference range: >70*; *between 25-70 referred for MMA
Vit D is good now and you can change to a maintenance dose to keep within the level recommended by the Vit D Council/Vit D Society - 125nmol/L and 100-150nmol/L respectively.
Thank you for replying! Apologies I think I missed a result for the NHS tests as she has been happy to look at the Medichecks results since then. The test in February was done non fasting and with a dose of Levo in the morning before the test - it was TSH 0.8 (range 0.2 - 6.0) Maybe this has caused confusion? I am hoping the Medichecks results are a better indicator now.
The test in February was done non fasting and with a dose of Levo in the morning before the test - it was TSH 0.8 (range 0.2 - 6.0)
So it would seem that your GP has reduced your dose on TSH alone? Why? It is in range? TSH should never be used as an indicator of thyroid status, it's not a thyroid hormone, FT4 and FT3 are the thyroid hormones and these are what should be used to base dose of Levo on, in particular the FT3 is the most important as this is the one which will tell us if we are overmedicated (it will be over range if we are). Unfortunately, doctors are so ignorant about hypothyroidism and how to treat it because they're taught that all that matters is the TSH result, hence why so many hypo patients are undertreated and ill.
So reducing your Levo has resulted, as expected, in a rise in your TSH from March to June from 2.09 to 2.86 (I think, numbers are very small), although your FT4 and FT3 are not that much different. Your FT4 is actually quite high in range considering your TSH level.
I was wondering about autoimmune thyroid disease (Hashimoto's). Your Tg antibodies are nice and low but your TPO antibodies are a bit suspicious at 20.1 (<34). I have had mine tested many times over the years, I don't have Hashi's and mine have always come back somewhere between 6 and 11. I'm wondering if yours have been higher, or may be if retested at some point. Antibodies fluctuate so they may have been caught when they're low when tested.
B12 is 69.2 (Range 37.5 - 188 pmo/L)
This is below 70 so you could ask for testing for B12 deficiency, but I'd check to see if you have any signs/symptoms first, if you do then list them to support your request:
If you don't have any then I'd just supplement with good B Complex to help raise your level, brands recommended here are Thorne Basic B and Igennus Super B, both contain the bioactive form of ingredients.
The GP did make a note on the blood form to get all the thyroid tests were done but they didn't do them, I believe that is very common! Yes, 2.09 to 2.86 now. I will look into getting another test done to check, and include the antibodies again, very soon.
Thank you for the advice on B12, I will go and do more research there, I have had a quick look and have some symptoms but not many, will double check! (I have had tinnitus for decades now)
It look a little bit like, especially as you are still symptomatic with a high T4 that you are not converting T4 to T3 well enough to feel better. It would probably be worth taking some selenium to see if that helps and some B12 to boost it a bit. It might also be worth doing the genetic test to see if you are a poor converter as this can help you access T3 on the NHS
The test is called D101 and D102. I have never needed it done but I think somebody else got thiers done by 23 and me. If you search on here for D101 lots of posts will come up about it to give you more information. Also there is a thyroid uk website that probably had information re where to get it done.
The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many need TSH significantly under one) and most important is that FT4 in top third of range and FT3 at least half way in range
All four vitamins need to be regularly tested and frequently need supplementing to maintain optimal levels
NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.
Also what foods to avoid (eg recommended to avoid calcium rich foods at least four hours from taking Levo)
Your GP should not have reduced Levothyroxine just testing TSH
Just testing TSH is completely inadequate
You now need Levothyroxine increase back to 100mcg and bloods retested 6-8 weeks later
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
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 Levo thyroxine
Hi SlowDragon. I didn't have my antibodies tested at diagnosis as far as I know but I will ask at my next appointment if they did that and get a copy of the results. And also not had an ultrasound - I didn't realise that would rule out Hashimoto's - still learning!
Current results as of last test - Medichecks - April 2019 - fasting and no levo for 24 hours
TSH 2.86 (0.27 - 4.2 mU/L)
Free T4 20.6 (12 - 22 pmol/L)
Free T3 4.78 (3.1 - 6.8 pmol/L)
Vitamin D 180 (50 - 175 nmol/L)
Folate 11.31 (>3.89 ug/L)
B12 69.2 (37.5 - 188 pmo/L)
Ferritin (84.4 (13 - 150 ug/L)
I can certainly try a gluten free diet and see what happens.
B vitamins best taken in the morning after breakfast
Recommended brands on here are Igennus Super B complex. (Often only need one tablet per day, not two. Certainly only start with one tablet per day after breakfast. Retesting levels in 6-8 weeks ).
Or Jarrow B-right is popular choice, but is large capsule
If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before any blood tests, as biotin can falsely affect test results
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.
Private blood results.... Help
At a dead end with GP, where to go from here?
Endo wants to reduce my T3 dose but I think I need an increase. Don't know what to do now????
Blood Test Results
