Hi everyone
Your thoughts would be appreciated on this situation.
My daughters GP wants to reduce her Levothyroxine to 75 mgs from 100 mgs per day. She has been taking this amount for several years. Her results in January were
TSH 0. 01 (0.2 -.7 - 4.2 )
FT4 22 (11-22)
FT3 5.4 (3.1- 6.8)
She still gets easily tired,.Thank you so much in advance for your comments.
moleland, looks like your daughters doc is only interested in TSH and is not happy that the number is below the range. I would suggest that she is not a good convertor of T4 to T3 and she needs a trial of T3 to add to her T4. The same thing happened to me after five years of feeling unwell in spite of being on levo.
I was not able to convince my GP at that time to send me to an endo. Thanks to help from this site I managed to source T3 and very slowly added 15mcgm over about 12 months, 5 mcgm am then 5 pm and then further 5mcgm am.
It depends on where she lives as to whether or not your daughter will be able to access T3 via the NHS. Her GP would need to refer her to an endocrinologist. It is very important that you ask TUK for their list of endos, too many are just diabetes specialists and know nothing about thyroid.
The focus on TSH is detrimental to reaching good health. I had to stand up to a locum GP, who was doing my annual review, who questioned my low TSH whilst taking T3. I told her TSH is not a thyroid hormone. ( my TSH has been low for at least 8 years and before I started taking T3. ) I also dismissed the "issues" of osteoporosis and palpitations and said I preferred to have a life rather then an existence.
We shouldn't have to fight for good health when we have thyroid issues but as is so often the case women are ignored, gaslighted etc. Look at the latest situation re menopause treatment and how women are treated by employers.
Hope your daughter improves.
Was test done early morning, ideally just before 9am and last dose levothyroxine 24 hours before test
What vitamin supplements is she currently taking
When were vitamin D, folate, ferritin and B12 last tested
FT3: 5.4 pmol/l (Range 3.1 - 6.8)
Ft3 only 62.16% through range
So she’s a poor converter of Ft4 to Ft3
First step is to check vitamin levels are optimal
Presumably she has Hashimoto’s?
Is she on strictly gluten free diet or dairy free diet
If GP says " I have to reduce your dose because the guidelines say i can't let you have a below range TSH" .....
The first paragraph in the NICE (NHS) Thyroid Disease, Assessment and Management guidelines says :
nice.org.uk/guidance/ng145
"Your responsibility
The recommendations in this guideline represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, professionals and practitioners are expected to take this guideline fully into account, alongside the individual needs, preferences and values of their patients or the people using their service. It is not mandatory to apply the recommendations, and the guideline does not override the responsibility to make decisions appropriate to the circumstances of the individual, in consultation with them and their families and carers or guardian. "
Comprehensive list of references for needing LOW TSH on levothyroxine
healthunlocked.com/thyroidu....
Hi Slow Dragon
Thanks so much for your reply. Amy unfortunately had a test at12 noon, normally she has it by 9am. She didn’t take her Levothyroxine that morning and stopped her B vitamins for 5 days before the test. She takes vitamin B12 and folic acid both prescribed. She takes vitamin D. She has been wheat and dairy free for 2 months, what a difference. The GP is fixated on getting the number TSH right! My initial thoughts were she’s a poor converter and lowering her levo by 25 mgs would be detrimental to her health. We are going to have another battle on the phone! He claims all his hypo patients are fine with his management of their health.! I wonder. ! I suggested to the pharmacist who rang me that some t3 with a reduced Levothyroxine might be an alternative or using NDT. I await the fall out! X
Refuse to reduce dose at moment
Retest at 8.30-9am
She doesn’t need to stop B12 or folate before test
Only any supplements that contain biotin (eg vitamin B complex)
Obviously she needs to test vitamin D, folate, ferritin and B12 too
Exactly what vitamin supplements is she currently taking
Delighted to hear gluten free and dairy free are having such positive effects
Approx how much does she weigh in kilo
Is her weight stable or decreasing now on GF and DF ?
Hi thanks for that, she has lost 10 lbs since being GF and DF she weighs 67 kilos now. Amy takes vit D Folic and B12. She has been anaemic in the past.
so as she looses weight she will probably need to SLOWLY reduce dose levothyroxine
Dose by weight suggests at 67kg daily dose of 107mcg per day
Come back with new post once get vitamin results
Rather than just taking folic acid,
supplementing a good quality daily vitamin B complex, one with folate in (not folic acid)
This can help keep all B vitamins in balance and will help improve B12 levels too
Difference between folate and folic acid
chriskresser.com/folate-vs-...
Many Hashimoto’s patients have MTHFR gene variation and can have trouble processing folic acid.
thyroidpharmacist.com/artic...
B vitamins best taken after breakfast
Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule)
Thorne currently difficult to find at reasonable price, should be around £20
If you want to try a different brand in the meantime, one with virtually identical doses of the ingredients, and bioavailable too, then take a look at Vitablossom Liposomal B Complex. Amazon sometimes has it branded Vitablossom but it's also available there branded as Yipmai, it's the same supplement
amazon.co.uk/Yipmai-Liposom...
or available as Vitablossom brand here
hempoutlet.co.uk/vitablosso... &description=true
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
endo.confex.com/endo/2016en...
endocrinenews.endocrine.org...
In week before blood test, when stop vitamin B complex, might want to consider taking a separate methyl folate supplement and continue separate B12
Low B12 symptoms
b12deficiency.info/signs-an...
methyl-life.com/blogs/defic...
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)
once her serum B12 is over 500 (or Active B12 level has reached 70), stop the B12 and just carry on with the B Complex.
Obviously needs iron and ferritin levels tested
As mentioned already vitmins etc should be looked at and improved if needed.
regarding the Levo ~25mcg is quite a big drop. her fT4 is right at the top and the the TSH ie totally supressed , so a small dose reduction might be worth trying ~ this may or may not reduce the fT3 result ( when fT4 is very high this actually slows down conversion of T4 to T3 a bit , so a little less T4 when T4 is high does not always reduce T3 level)
When fT4 is high and not feeling well , it's worth the experiment of a small reduction (even if just to show it's been tried and ruled out before moving the GP on on to other routes . such as asking to be referred to Endo for a trial of T3 combination therapy)
But if it was me, i would prefer to reduce by just 12.5mcg rather than 25mcg.
When i reduced by 25mcg it ended up being too much of a reduction and left me with symptoms of undermedication.. and it had to be put back up by 12.5mcg and after a few months i found i was actually feeling better overall than i was on the previous dose (before reduction)
When trying a reduced dose by 12.5mcg , in my experience you can expect the first few weeks (4 or 5) to feel a bit 'wrong' / undermedicated ,, varied things happening as the body adjusts itself to the new level and compensates ,, eg a week of constipation, that then improves ,a few days of random mild headaches , feeling generally more slow etc ....but then things gradually improved again from week 4/5 onwards . .. if they don't improve and are getting worse by the time of the repeat blood test at 6 -8 weeks , then discuss putting the dose back to 100mcg if that felt better overall , or seeing Endo..
But if she does try a lowered dose, tell her not to make her mind up about how the lower dose if going to feel during those first few weeks ... it's a mistake i've made before and now realise i needed to wait longer to see how it would really feel once my body had adjusted itself .
Hi Tattybogle
I thought like you this was a huge drop, I also wondered if she was a poor converter? Wish us luck on our next encounter with the GP.x
some bedtime reading on the subject of Low TSH / Risk vs Quality of life:
GP will say TSH below reference range is risky for heart / bones ,, but when you look at the detail (of the actual study that was used by N.I.C.E as the basis of their recommendations to avoiding low TSH ).. it does not say 'all' low TSH .. it says TSH below 0.04 increased risks but "low but not supressed' TSH (between 0.04 -0.4) actually had no increased risks over TSH in range (0.4 -4)
I did a lot of reading about low TSH /risks/ on Levo, as mine had been 0.05ish for over a decade.
I found a large, long term study of patients on Levothyroxine, showing that 'risks' for TSH 0.04 - 0.4 were actually no greater than the risks for TSH 'in range' (0.4 -4)
academic.oup.com/jcem/artic...
The risks did increase quite sharply for TSH below 0.04 , but most of them were still less than risks for TSH over 4 ... (and recent NHS guidelines say they don't even need to treat hypothyroidism until TSH is above 10 .. so they are obviously not very worried about the risks of TSH over 4 )
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see my reply to this post (3rd reply down) for a list of links to useful discussions on here and evidence healthunlocked.com/thyroidu... /feeling-fine-but-tsh-is-low
*Note the part at the end of the list ~ recent research does raise a concern about having T4 levels that are higher ( T4 from any source , our own T4 as well as T4 from levo) .. and is why i suggested that trying a very slightly lower dose is not a bad idea if doing so doesn't leave her feeling less well ,( or trying a bit less levo plus a bit of T3)
personally i'm not overly concerned about it ..and i've had T4 up the top end /or over for most of my years on Levo ... but this point about " the higher the T4 ,the more association with some types of cancer cell proliferation" could potentially be used to form part of the argument for trying combination therapy (Less levo +T3)
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The 'bone' issue actually seems to be so small as to be insignificant , for long term levo patients who's TSH was kept deliberately supressed on larger doses of Levo (as part of after care for thyroid cancer to reduce chances of thyroid cancer returning) healthunlocked.com/thyroidu... longterm-subclinical-hyperthyroidism-does-not-affect-bone-density-in-patients-having-had-thyroid-ablation-for-cancer .
There is an association from low TSH to bone loss, hence the lecture you will be getting from GP about 'bones' ~ but most of that research evidence will actually be referring to patient groups who were actually hyperthyroid (not on levo) ..eg had low TSH due to high T4 AND high T3 .. and the distinction between those patients and patients on Levo who tend to end up with higher T4 , but lower T3 is not emphasised.
Thank you for the information x
Daughters results 
Daughters Blood results
Daughters results,from Bluehorizon.
Daughters blood results 
My daughters results 
