Should I accept GP advice for dose reduction? - Thyroid UK

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Should I accept GP advice for dose reduction?

ILR2019 profile image
19 Replies

Hello all,

Your expertise has been vital in the past and during the last year, it's thanks to this group and your wonderful advice I have been able to fight my corner regarding my treatment (finding an understanding GP has also proved vital). I have been ticking along quite nicely, but my last Medichecks results have me stumped.

NOVEMBER 25TH 2019 - my dose is increased from 100mcg Levo to 125mcg

TSH X 4.49 mIU/L (Range: 0.27 - 4.2)

Free T3 4.88 pmol/L (Range: 3.1 - 6.8)

Free Thyroxine X 10.700 pmol/L (Range: 12 - 22)

EDIT: JANUARY 22ND - NHS results as part of an annual review (I was unaware at the time thyroid was included. This test was at 10.30am, 3.5 hours after taking Levo and eating breakfast)

TSH 0.05 miu/L [0.35 - 4.94]

Serum free T4 level (XaERr) 17.6 pmol/L [9 - 19]

JANUARY 29TH - GP has suggested a dose reduction back to 100mcg 😔

TSH X 0.115 mIU/L (Range: 0.27 - 4.2)

Free T3 4.9 pmol/L (Range: 3.1 - 6.8)

Free Thyroxine 18.300 pmol/L (Range: 12 - 22)

Based on these latest resulta, my GP has suggested a dose reduction (mainly because of the TSH as she said she is happy for it to be rock bottom of lab range, but not suppressed). Problem is I feel great (well better than I had been in the past). I have energy. Weight is shifting, all be it slowly. However, I still need to doze during the day, I still feel cold (although it's not as severe as previously) and I've started getting nausea which in the past is an indicator of needing a Levo increase. What do you good people advise? I am loathe to agree a reduction atm.

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ILR2019
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19 Replies
humanbean profile image
humanbean

I would suggest resisting the dose reduction.

The Free T3 hasn't really changed between the two sets of results and both sets of results show that you don't convert from Free T4 to Free T3 very well at all. It is the level of Free T3 which mostly determines how well or ill people feel, although some people need Free T4 to be at a good level too to feel at their best (as well as good levels of Free T3).

The November results show your TSH over the range and Free T4 to be substantially under the range. Your Free T3 is 48% of the way through the range, i.e. in the bottom half of the range.

The January results show your Free T4 is 63% of the way through the range, which isn't high.

Point out to the doctor that reducing your dose back to 100mcg will just return you to having under the range Free T4 and over the range TSH.

Have you had your nutrient levels checked recently i.e. vitamin B12, folate, vitamin D and ferritin? If you have, could you post them, please. Optimal levels of nutrients will help your conversion.

ILR2019 profile image
ILR2019 in reply to humanbean

Im not sure about B12, folate and ferritin as I had assumed they would be tested in my yearly review due to them being previously low, but they were'nt included. My Vit D is back to normal since supplementing at GP request last year.

I have just edited my original post due to remembering TSH and T4 was included in my annual review last week. My T4 has increased slightly on the NHS test. Not sure why that would be.

Do you think I should request a dose increase to 150mcg based on the T3 result or would that risk T4 going over range?

humanbean profile image
humanbean in reply to ILR2019

I'm curious what your vitamin D result was when it was "back to normal". I think you'll find that many people on this forum are allergic to the word "normal" when it comes to reporting on blood test results!

The fact that your Free T4 wasn't very high when tested 3.5 hours after you'd taken your Levo is a bit of a surprise. I would have expected it to be much higher. I would say that your results from the 22nd can't be relied on because the conditions of the test were presumably quite different to the conditions of the other tests.

There is a circadian rhythm to the production of TSH which will have affected the results from the 22nd. See this thread and study the graphs :

healthunlocked.com/thyroidu...

The paper the graphs came from can be found here :

academic.oup.com/jcem/artic...

Note to helvella : Your very old thread I've linked to above is still very useful, but the link to the full paper within it is broken. I haven't checked all the possible sources for the paper, and the one I've chosen was the first one I tried. There may be others which are better.

ILR2019 profile image
ILR2019 in reply to humanbean

Serum total 25-hydroxy vitamin D level 45 in September last year. Now they are 62 (as of January 2020).

Yes the latest NHS test was not done under 'my' usual curcumstances (before 8.30am, fasting, w4 hours after last Levo dose).

I'll take a read through those links. Thank you so much. As usual I get exceptional advice on this forum x

Marz profile image
Marz in reply to ILR2019

VitD would be better around 100 - B12 around 500 and Ferritin and Folate at mid-range ...

helvella profile image
helvellaAdministratorThyroid UK in reply to humanbean

Will post again!

humanbean profile image
humanbean in reply to helvella

Thank you. :)

penny profile image
penny in reply to humanbean

Love this “allergic to the word “normal””. I scream internally every time I read “normal” in a post in relation to tests.

humanbean profile image
humanbean in reply to ILR2019

Do you think I should request a dose increase to 150mcg based on the T3 result or would that risk T4 going over range?

I don't think you have any chance of persuading your doctor to go up to a dose of 150mcg per day since your TSH is already well below range.

You would be better to try various ways of improving your conversion, most of which are diet-based e.g. trying out being 100% gluten-free if you aren't already, optimising nutrients. See the Izabella Wentz website for a lot more advice :

thyroidpharmacist.com/

You could also consider whether your adrenal health is good. To get an idea of how to approach that, here is one suggestion :

drrind.com/therapies/metabo...

ILR2019 profile image
ILR2019 in reply to humanbean

I have changed my diet dramatically, especially over the last 6 months. Gluten free, very little processed foods, limiting sugar (as in choccie bars etc), organic produce. I just don't know what else to do 😔. I fall off the wagon every now and again, but so few times I wouldn't have thought the effects would even be a blip on the radar.

humanbean profile image
humanbean in reply to ILR2019

Sorry, I've run out of ideas now. :(

"GP has suggested a dose reduction back to 100mcg"

NO!!! That happened to me and after a few months I began to get breathless and have swollen ankles. And my TSH was 0.01!

Subsequent tests, after a few further increases, have never been that low. Probably was a "Flare".

Your T3 and T4 are still well below maximum anyway. The doctor should know that supplementing thyroid hormone is itself likely to disrupt the feedback cycle and result in low or suppressed TSH. Yours isn't even that much suppressed!

ILR2019 profile image
ILR2019 in reply to

This is pretty much what I said when she suggested the reduction. Since my last increase i've felt the best I have in the last few years!

Marz profile image
Marz

No need to reduce dose as FT3 in range. TSH not a good test once taking thyroid hormone.

Tests for B12 - Folate - Ferritin - VitD are not routine tests and must be requested. If levels of these are low in range then it can affect conversion of T4 into T3.

Normal/Fine/OK is an opinion rather than a result - Docs think it is what we want to hear - NO we want the actual result with ranges.

ILR2019 profile image
ILR2019 in reply to Marz

My B12 has been consistently low (floating between 200 and 300) since 2013 (possibly longer, but that's as far as I can access medi records atm).

Marz profile image
Marz in reply to ILR2019

Are you supplementing B12 ?

ILR2019 profile image
ILR2019 in reply to Marz

No. I really should be though.

Marz profile image
Marz in reply to ILR2019

B12 and Folate work together in the body. Jarrow Methylcobalamim 5000 mcg lozenges from Amazon would be a start followed by the 1000mcg. Also a GOOD B Complex is needed to keep all the B's in balance - I use Thorne Research.

Low B12 can be linked to brain lesions and shrinkage and lots of other neurological issues when B12 is below 500.

SlowDragon profile image
SlowDragonAdministrator

Absolutely essential to test vitamin D, folate, ferritin and B12

Vast majority of hashimoto’s patients need to supplement virtually continuously to maintain optimal levels

Vitamin D at least around 80nmol- 100nmol

Folate and B12 need to be at top of range

What vitamin supplements are you currently taking?

Supplementing a good quality daily vitamin B complex, one with folate in not folic acid may be beneficial. Plus you may need separate sublingual B12 as well if you have low B12symptoms

Low B12 symptoms

b12deficiency.info/signs-an...

Folate

chriskresser.com/folate-vs-...

B vitamins best taken in the morning after breakfast

Igennus Super B complex are nice small tablets. 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 Thorne Basic B or jarrow B-right are other options that contain folate, but both are large capsules

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

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

Low vitamin D and low B vitamins may be linked as explained here

drgominak.com/sleep/vitamin...

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