Feel like I’ve lost my way…advice please - Thyroid UK

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Feel like I’ve lost my way…advice please

SarahJane1471 profile image
9 Replies

hello everyone 👋. I’m feeling a bit stuck with what to do with my T4 dosage. I’m going to list some results from the last couple of years for you to look at and perhaps point me in the right direction.

All tests done as advised on this forum. All meds taken as advised here. I stopped my supplements a couple of months ago because I was getting confused 🫤.

July 2021

TSH 3.32 (0.3-5.0)

FT4 11.3(12-20)

FT3 4.2 (3.1-6.8) at this point I start 25mcg Levo

October 2021

TSH 3 (0.3-5)

FT4 13.3 (12-20)

FT3 3.9 (3.1-6.8) Start Levo 75mcg

Dec2021

TSH 0.59

FT4 16.5

FT3 4.6 same range as above

Levo upped to 100mcgs

Feb 2022

TSH 0.04(0.27-4.2)

FT4 19.1(12-22)

FT3 5.22(3.1-6.8) this was the only point I have felt well for approximately 3 years. But only lasted a month 🙁

May 2022

TSH 0.27

FT4 14.6

FT3 3.9 same ranges

Levo upped 125mcgs

July 2022

TSH0.04 (0.27-4.2)

FT4 17.3(12-22)

FT3 4.7(3.1-6.8)

Reduced Levo to 100mcgs as I felt a bit overmedicated during hot weather.

Sept 2022

TSH 0.1

FT4 16.7

FT3 4.78 same range

Thyroglobulin anti. 89<115

Peroxidase 9<34

Folate 12.63>3.89

Active b12 96.2 (37.5-150)

Vit D 92 (50-200)

Ferritin 187 (13-150)

CRP 1.0 (0.5)

I’m really sorry this is such a long post but I’m struggling to understand why my TSH keeps going down but the Frees don’t seem to rise very much.

I’m about to restart the vitamin regime (D,Bs,C) but does anybody have any ideas what to do next? 🤷‍♀️

oh also I’ve gone back up to 125mcgs as I was feeling under medicated again ( but the latest test was on 100mcgs)

I can’t afford to find a private endo and there are no thyroid endos on the ThyroidUK list in my area.

I have a friend who frequently flies to Athens who is going buy T3 for me SHOULD I choose to self medicate. But I just don’t know what to do anymore 🤦‍♀️.

Sick and tired of feeling sick and tired!

thanks for reading

Sarah

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SeasideSusie profile image
SeasideSusieRemembering

SarahJane1471

October 2021 - on 25mcg Levo

FT4 13.3 (12-20) = 16.25% through range

FT3 3.9 (3.1-6.8) = 21.62%

*

Dec 2021 - on 75mcg

FT4 16.5 = 56.25%

FT3 4.6 = 40.54%

T4:T3 = 3.58 : 1

*

Feb 2022 - on 100mcgs

FT4 19.1(12-22) = 71%

FT3 5.22 = 57.3%

T4:T3 = 3.65 : 1

*

May 2022 - on 100mcgs

FT4 14.6 (12-20) = 32.5%

FT3 3.9 same ranges (assume as first three results) = 21.62%

T4:T3 = 3.74 : 1

*

July 2022 - on 125mcgs

FT4 17.3(12-22) = 53%

FT3 4.7(3.1-6.8) = 43.24%

T4:T3 = 3.68 : 1

*

Sept 2022 - on 100mcgs

FT4 16.7 = 47%

FT3 4.78 same range (assume as test immediately above) = 45.41%

T4:T3 = 3.49 : 1

*

A bit confusing where you have put "same range" because the FT3 you've put as the same all through, so I assume you mean the FT4 is the same as the original ones at 12-20 except where you've changed it to 12-22. But your final test is obviously a private one due to the Active B12 and both thyroid antibodies being tested.

I have a friend who frequently flies to Athens who is going buy T3 for me SHOULD I choose to self medicate.

In my opinion you don't need T3. Looking at those percentages your FT3 is not low compared to your FT4, conversion is pretty good. Once TSH gets down to 1 or below we can see how well you convert and good conversion takes place when ratio of T4:T3 is less than 4:1 and you can see yours above and in all cases it's pretty consistent at around 3.5-3.6 : 1

Thyroglobulin anti. 89<115

Is this the only time antibodies have been tested? This is too high to ignore and I wouldn't be surprised if you actually have Hashi's but just haven't had a test where they show over range. This would account for the fluctuations in your results.

Folate 12.63>3.89

Good.

Active b12 96.2 (37.5-150)

Pretty good. We say to aim for 100 plus.

Vit D 92 (50-200)

Pretty good. The Vit D Council, Vit D Society and Grassroots Health all recommend a level of 100-150nmol/L with a recent blog post on Grassroots Health recommending at least 125nmol/L.

Ferritin 187 (13-150)

On the highish side. Ferritin is recommended to be half way through range with some experts saying the optimal ferritin level for thyroid function is 90-110ug/L.

CRP 1.0 (<5)

As an inflammation marker the lower the better so this is a good result.

If those were my nutrient results I'd be taking a B Complex 2 or 3 times a week, I'd supplement Vit D with cofactors magnesium and K2-MK7 during the winter months at probably 2,000iu D3 daily. Ferritin needs no supplementation.

SarahJane1471 profile image
SarahJane1471 in reply to SeasideSusie

Thankyou. Great info as always 😁.yes the last results are from Medichecks. SlowDragon suggests 100/125 Levo alternate days. Can you think of anything else I can do? The fatigue just won’t go away ….. having to sleep at lunch everyday !!

SarahJane1471 profile image
SarahJane1471 in reply to SarahJane1471

Also Thyroglobin high in April 2022 . 122<115. What does this mean in terms of treatment?

SeasideSusie profile image
SeasideSusieRemembering in reply to SarahJane1471

A couple of things come to mind.

Your nutrient levels are apparently pretty good, but even so this is a snapshot of what's in the blood, not what's reaching the cells. We can have good results showing in the blood but that's not always a true picture. Some people have a good Active B12 blood result but still have B12 deficiency. So - possible absorption problem?

Looking at your results, this one shows the highest FT4 and FT3:

Feb 2022 - on 100mcgs

FT4 19.1(12-22) = 71%

FT3 5.22 = 57.3%

How did you feel?

Your most recent results:

FT4 16.7 = 47%

FT3 4.78 same range (assume as test immediately above) = 45.41%

both below half way through range. This would be too low for most people on Levo.

You seem to be undermedicated at the moment so I would try gradually increasing your dose and maybe giving it longer for levels to settle. When I change dose I'm still feeling a difference at 10 weeks.

You can fine tune, I actually take 107mcg Levo average by taking 100mcg 5 days a week and 112.5mcg 2 days per week, arranging it so that I take 2 x 100, 1 x 112.5mcg, 3 x 100,1 x 112.5mcg per week, then repeat.

SarahJane1471 profile image
SarahJane1471 in reply to SeasideSusie

yes that Feb 2022 result was the best I’ve felt in 3 years. But it didn’t last much more than a month. I think I maybe didn’t give 125 mcgs long enough to settle. If I have Hashi do I need to do anything different treatment wise? I’ve seen people talk of “swings”, does that mean I need to ride it out?

SeasideSusie profile image
SeasideSusieRemembering in reply to SarahJane1471

I don't have Hashi's so no personal experience but adjusting dose if you have a hyper swing and feel overmedicated, yes definitely, then if you go hypo adjust back up again.

If you can get back to your February levels again, see how you feel but definitely give it longer for levels to settle.

SarahJane1471 profile image
SarahJane1471 in reply to SeasideSusie

Thankyou 🙏really appreciate your advice ( also re vitamins) . It’s given me a plan…… and I do like a plan 🤓

SlowDragon profile image
SlowDragonAdministrator

you don’t have to take 125mcg or 100mcg

Many people need to fine tune ….

Eg 100mcg and 125mcg on alternate days

Or cut 25mcg in half and take 112.5mcg every day

Some people find it better to split levothyroxine, taking half daily dose waking and half at bedtime

Only try one change at a time and retest after 6-8 weeks

Do you always get same brand levothyroxine at each prescription

SarahJane1471 profile image
SarahJane1471 in reply to SlowDragon

Thankyou. Always Mercury Pharma. Can’t split dose as I take other meds at night. But I’ll try alternate days. 👍

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