Thyroid issues: received a TSH of .01 and my T... - Thyroid UK

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Thyroid issues

ThyroidCancerGal profile image

received a TSH of .01 and my T4free at 2.0 but I’ve been super tired and full on leg cramps- so now my Dr. is saying to lower my Levothyroxine from 125mcg to 100mcg and keep my cytomel at 10mcg. Does anyone have any other suggestions?

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ThyroidCancerGal
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22 Replies
SeasideSusie profile image
SeasideSusieRemembering

ThyroidCancerGal

To be able to make meaningful comments, we need to see the reference ranges for your results please. Also your Free T3 result plus range, especially as you take Cytomel.

Have you had key nutrients tested?

Vit D

B12

Folate

Ferritin

These all need to be optimal as low levels or deficiencies can have symptoms which overlap with symptoms of hypothyroidism.

Fatigue can be low ferritin, iron deficiency or low B12.

Mineral deficiency can cause leg cramps, eg magnesium, potassium.

ThyroidCancerGal profile image
ThyroidCancerGal in reply to SeasideSusie

Here is one test- I’m new to this site- so let me try to figure out to post all at the same time

Test results
ThyroidCancerGal profile image
ThyroidCancerGal in reply to ThyroidCancerGal

T4

Test results
SeasideSusie profile image
SeasideSusieRemembering in reply to ThyroidCancerGal

That looks like it might be Total T3, it's the Free T3 test that's needed.

ThyroidCancerGal profile image
ThyroidCancerGal in reply to SeasideSusie

Thank you SeasideSusie! So I need blood work for Free T3 and my key nutrients checked, correct? When I go in for this blood work is there anything I should do to get the true test results?

SeasideSusie profile image
SeasideSusieRemembering in reply to ThyroidCancerGal

Ideally TSH, Free T4 and Free T3 need to be done from the same blood draw.To obtain most accurate results of the amount of normal circulating thyroid hormone then we always advise:

* test no later than 9am

* last dose of Levo 24 hours before the test

* last dose of T3 8-12 hours before the test

* nothing to eat or drink except water before the test

* B Complex or Biotin supplement should be left off for 7 days before the test

* when testing Ferritin or iron, no iron supplement for 7 days before the test and test after a 12 hour fast

If you take any other supplements take them after the test on the day.

ThyroidCancerGal profile image
ThyroidCancerGal in reply to SeasideSusie

Thank you so so much!!

unblocktheplane profile image
unblocktheplane in reply to ThyroidCancerGal

Unfortunately, it looks like this test is for Total T3. Free T3 is the accurate marker.

unblocktheplane profile image
unblocktheplane in reply to SeasideSusie

Actually, all four irons should be tested: Serum iron, TIBC, Ferritin, Transferrin, and Saturation %. Sodium & potassium, too. Magnesium can only be tested accurately by MMC. No harm in supplementing. Yes, lab values without the reference ranges used by your labs are not useful.

SeasideSusie profile image
SeasideSusieRemembering in reply to unblocktheplane

Unblocktheplane

Actually, all four irons should be tested: Serum iron, TIBC, Ferritin, Transferrin, and Saturation %.

I think your reply was probably meant for the OP but yes I know that but there's zero chance of that happening on the NHS in the UK unless ferritin is dire, hence suggesting key nutrients are tested including ferritin as a first step.

Yes, lab values without the reference ranges used by your labs are not useful.

These have been requested and provided.

unblocktheplane profile image
unblocktheplane in reply to SeasideSusie

Here in Thailand, we can order & pay for our own labs at public hospital prices. The results provide valuable ammunition at appts with docs. Hard to argue with evidence.

SeasideSusie profile image
SeasideSusieRemembering in reply to unblocktheplane

But doctors here do argue with the evidence, they don't like us getting private tests and most doctors wont accept them.

unblocktheplane profile image
unblocktheplane in reply to SeasideSusie

Wow, what a closed-minded attitude! It's true everywhere, including here, but knowing my own labs gives me further opportunity to seek guidance. Staying well away from hospitals these days, of course.

ThyroidCancerGal profile image
ThyroidCancerGal

TSH

Test results
jimh111 profile image
jimh111

Going by the numbers your fT4 looks slightly high and although they measured total T3 instead of free T3 your free T3 is probably OK. If you had thyroid cancer recently it's possible you had high hormone levels and this suppressed your TSH. In these cases TSH can take many months to recover and so TSH is not a good indicator of thyroid hormone status at the moment.

Both hyper and hypo thyroidism can lower magnesium levels so it's a good idea to supplement (not Mg oxide or Mg hydroxide). I'd be tempted to lower your levo to 100 mcg provided it doesn't make you worse. The idea is it might help your TSH come back sooner than if you are on 125 mcg. If this makes you worse I'd be tempted to ask for more cytomel and reduce your levothyroxine, the reason being that T4 to T3 conversion is lowered when TSH is low (TSH stimulates conversion). This can lead to low tissue T3 even if you get enough T3 in the blood.

ThyroidCancerGal profile image
ThyroidCancerGal in reply to jimh111

Thank you so much jimh111, this was very helpful! Btw I had thyroid cancer 15 years ago.

unblocktheplane profile image
unblocktheplane in reply to jimh111

While it is 'unusual' for TSH to be so suppressed when your principal therapy is T4, it's not worrying: low is what you want. It does not need to come back!

jimh111 profile image
jimh111 in reply to unblocktheplane

As I mentioned above, TSH is needed for good T4 to T3 conversion , especially type-2 deiodinase (D2) which regulates local T3 levels. Ideally we want a normal TSH if possible.

unblocktheplane profile image
unblocktheplane in reply to jimh111

In T4 monotherapy, yes. On T3, TSH is always suppressed and thyroid hormone is available exogenously to the cells.

jimh111 profile image
jimh111 in reply to unblocktheplane

No, TSH is not always suppressed on T3. This is a myth. TSH depends on the dose of T3 ncbi.nlm.nih.gov/pmc/articl... . If you give higher doses of T3 it will suppress TSH. TSH only responds to T3 - T3 directly from the blood and T3 by converting T4 in the blood to T3.

T3 in the blood is different to T3 converted from T4 in organs such as the brain. The brain gets 80% of its T3 from local conversion of T4 and 20% from the blood. Thus, if you restore serum T3 the brain will happily get its 20% of T3 from the blood. How, much of the 80% it gets from T4 depends on how well it is converting T4 to T3.

Thalia_sredaf profile image
Thalia_sredaf

Your doctor needs to be testing your Free T3 and Reverse T3 as well. Also check to ensure your irons and Vitamin D are optimal. Good luck!

unblocktheplane profile image
unblocktheplane

Definitely, magnesium for leg cramps. The liquid variety is more expensive but better absorbed. Mag citrate if your bowels are tight, glycinate if your bowels are loose.

If your doc wants to lower your T4, you might suggest to him that you raise your T3, say to 15 or 20ug. There's a good chance this may improve your fatigue.

An OP above suggested testing Reverse T3. This is only useful if you are taking T4 only. Any T3 will skew the ratio.

Doesn't sound like your doc is a big free thinker but he may have checked your RT3 previously. Have a look.

Many who have had thyroidectomies don't cope well with T4. You may need to play with the T4:T3 dosages until you feel well. Go with how you feel rather than solely on labs.

I'd also suggest asking your questions on the Thyroid Patients Canada Support Group on Facebook. (You don't need to be Canadian.) They've got some great science going.

Good health, Gal.

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