Latest results: Here are my latest results... - Thyroid UK

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Latest results

Dollydaydream11 profile image
29 Replies

Here are my latest results following on from my last post regarding whether to take T3 as well as T4..

could someone please take a look and advise if I need T3 please..

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Dollydaydream11 profile image
Dollydaydream11
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29 Replies
SlowDragon profile image
SlowDragonAdministrator

Your FT4 and FT3 are now lower than previous tests

healthunlocked.com/thyroidu...

How much Levothyroxine are you currently taking?

Dollydaydream11 profile image
Dollydaydream11 in reply to SlowDragon

I’m on 50mcg, I’ve been on levo since December

Dollydaydream11 profile image
Dollydaydream11 in reply to SlowDragon

SlowDragon do you think I’d be safe to take a tiny bit of t3 please.. maybe 3.14mcg to see?

SlowDragon profile image
SlowDragonAdministrator in reply to Dollydaydream11

Personally I would push GP for dose increase in Levothyroxine first

Dollydaydream11 profile image
Dollydaydream11 in reply to SlowDragon

Thanks for reply, I don’t think that will happen as I’m under 1..

I’ll ask 😊

SlowDragon profile image
SlowDragonAdministrator in reply to Dollydaydream11

Guidelines say most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine

Typically 1.6mcg Levothyroxine per kilo of your weight

Your vitamin levels are low because your gut is compromised because you are under treated on too low a dose of Levothyroxine

If/when you do ever start any T3 then TSH would almost inevitably drop to zero

Unless T3 is being prescribed via endo, you then get endless battles with GP at annual review and they want to reduce Levothyroxine even further

Email Dionne at Thyroid Uk for list of recommended thyroid specialist endocrinologist

Roughly where in the UK are you?

Getting DIO2 gene test is something to consider too

thyroiduk.org.uk/tuk/testin...

Dollydaydream11 profile image
Dollydaydream11 in reply to SlowDragon

Thank you, i’m In Dorset..

I need about 92mcg levo then for my weight..

not sure what DIO2 gene is, I’ll have a read thank you..

SlowDragon profile image
SlowDragonAdministrator in reply to Dollydaydream11

DIO2 gene is relatively common genetic variation (especially in thyroid patients) about 20% have either Heterozygous (inherited from one parent) or homozygous (inherited from both parents)

It means if you have this genetic variation that although rest of your body can convert FT4 to FT3, your brain struggles to convert FT4 to FT3.

Patients with DIO2 usually need addition of small dose of T3 to regain full health

Test requires you have compulsory counselling as well to discuss implications of test result

thyroiduk.org.uk/tuk/testin...

thyroiduk.org.uk/tuk/testin...

To explain this paper briefly, the DIO2 gene activates tri-iodothyronine (T3) and the researchers found that a tiny fault in this gene could mean that although the body gets enough T3, the brain doesn’t.

The researchers found that patients on levothyroxine (T4) alone felt worse if the faulty DIO2 gene was inherited through one parent and worse still if they inherited the faulty gene from both parents.

The patients on this study were given T4 only for a set period and then combination treatment of both T4 and T3. The patients who had normal genes did not feel any different on combination treatment. However, those who had one faulty gene felt better on the combination treatment and those with both faulty genes felt better still.

This means that there is a possibility that patients who are on levothyroxine alone and still have symptoms may improve with the addition of T3.

Because this faulty gene causes a deficiency of T3 within the cells, the usual thyroid hormone function tests will not show up a problem. This means that your TSH, FT4 and FT3 blood tests will look normal.

Dollydaydream11 profile image
Dollydaydream11 in reply to SlowDragon

Thank you so much for explaining this, I think I will get this test done, I’ve had a look and it’s a saliva test I gather and I can do the counselling bit on the phone?

Is it a really bad thing to have then if counselling is needed?

SlowDragon profile image
SlowDragonAdministrator in reply to Dollydaydream11

No it's not "bad" but all UK DNA tests require counselling to explain the implications and make sure you understand what it means

Many medics still haven't heard of it, or still won't recognise it. But as more and more people do the test, it's becoming more apparent that many of us who have had such trouble on just Levothyroxine, turn out to have this genetic variation

One endocrine centre in Kent offers DIO2 gene test on NHS and will prescribe T3 on NHS if testing positive

Dollydaydream11 profile image
Dollydaydream11 in reply to SlowDragon

Thank you.. sounds promising that there is at least one place who will do testing.. I’m sure more will follow..

SmallBlueThing profile image
SmallBlueThing

From the SPINA thyr software, your GD (conversion efficiency) is 20.53 nmol/s (range 20~40). Poor converters have a GD under 23 nmol/s. Simpler is to look at the fT4:fT3 ratio and yours is over 4.5:1.

Doctors, please do not increase the T4 dose in a “poor converter” with low GD whose T4 is already high-normal. This can result in even lower T3 and/or adverse cardiovascular symptoms from excess T4. Pushing the T4 level beyond a person’s set-point will decrease the action of the enzyme Deiodinase type 2 (D2) and increase the action of Deiodinase type 3 (D3). The role of Deiodinase type 3 is to convert T4 into Reverse T3 and convert T3 into T2, thereby causing a net result of T3 depletion. thyroidpatients.ca/2019/06/...

Judithdalston profile image
Judithdalston in reply to SmallBlueThing

Interesting, hadn’t seen this conversion software before. Bit too long an article for my brain fogged brain at mo, but couldn’t see any ref. to how optimum ferritin, folate, b12, vit D, selenium etc etc can help with conversion too. 50 mcg of levo is still quite a low dose, I would have suggested testing vits/ mins etc, and raising levo dose rather than add T3 first, despite article... When is FT4 high in range, not sure 17.7 with upper range of 22 would be high yet, another 25 mcg levo. might still produce in range result, even tho TSH may reduce further. Are you Hashimoto’s, or other reason known for hypothyroidism Dollydaydream?

Dollydaydream11 profile image
Dollydaydream11 in reply to Judithdalston

Yes I’m Hashimoto’s.. I’m also B12 deficient but self inject and take folate and b complex.. I am also on vitamin d protocol

Marz profile image
Marz in reply to Dollydaydream11

How is your Ferritin ? - good at mid-range to help conversion I have read ...

Dollydaydream11 profile image
Dollydaydream11 in reply to Marz

My iron levels are good 👍🏻

Dollydaydream11 profile image
Dollydaydream11 in reply to SmallBlueThing

My previous results in May were these, same ranges as recent tests

TSH 1.42

FT3 4.59

FT4 22.8 (over range)

SmallBlueThing profile image
SmallBlueThing in reply to Dollydaydream11

Those results show a lower GD of 18.61 nmol/s and fT4:fT3 higher at nearly 5:1 so, although the fT3 result wasn't worse, your conversion efficiency was.

Dollydaydream11 profile image
Dollydaydream11 in reply to SmallBlueThing

Thank you.. So is my conversion improving?

SmallBlueThing profile image
SmallBlueThing in reply to Dollydaydream11

It appears so, yes.

Have you remained on the same dose but introduced supplements between those tests?

Usually with Hashimoto's, as the thyroid's output wanes, the conversion efficiency worsens. Before treatment, the conversion efficiency may look good, but the fT4 will be lowish or noticeably low. Results, including fT3, from before treatment commenced, are particularly useful for the SPINA thyr software.

Dollydaydream11 profile image
Dollydaydream11 in reply to SmallBlueThing

I’ve started taking selenium.. Test results before treatment, although my TSH isn’t particularly high I was very symptomatic

TSH 3.63

FT3 4.75

FT4 18.4

Total thyroxine 77.2 range 66-181

Freddyy profile image
Freddyy in reply to Dollydaydream11

Strange, levels here are fine but with higher TSH!!!

Dollydaydream11 profile image
Dollydaydream11 in reply to Freddyy

I felt awful though 🤷🏻‍♀️

Bramble83 profile image
Bramble83 in reply to SmallBlueThing

This is really interesting- thanks for sharing. I have been a little puzzled by my latest results, which after a 25mg increase of Levo up to 75mg, saw my FT3 plummet to below range 2.9 (3.1-6.8), despite my TSH coming down to 1.44 and my FT4 being at 17.4 (12-22).

I guess this could be a viable explanation.

SmallBlueThing profile image
SmallBlueThing in reply to Bramble83

Your Structural Parameters from SPINA thyr show the worst GD (conversion efficiency) I've yet seen, and your fT4:fT3 ratio is 6:1.

Structural parameters:

GD: 15.41* nmol/s

sGD: -2.92*

TSHI: 2.7

sTSHI: 0.01

TTSI: 114

Bramble83 profile image
Bramble83 in reply to SmallBlueThing

Hmmmm, yes, I didn’t think they’d be great! Thanks for sharing 😀

I also have Addison’s disease, so my endo has upped my steroids as well as my Levo to 100mg, to see if that helps improve my conversion.

silverfox7 profile image
silverfox7

You are really only at the start of your thyroid journey as 50 mcg is a starter dose. It was take several months to find the correct dose for you. Did your doctor tell you to return in 6-8 weeks to retest bloods? It takes a full 6 weeks to get each new dose fully into your body and then we are tested again and meds upped by 25 mcg if thought necessary. This is repeated u til you are on the correct dose for you so it takes time and needs working on so far too soon to think of adding things in.

Ask you doctor to test Vit D, B12, folate and ferritin asrhese help our thyroid work much better but results need to be optimal, not just in range so post to get guidance for that. We have to be patient but I know that feels so slow when we aren't feeling well but that's the way it is and if we try to speed things up, well we can't and that could send us back to starting again.

Dollydaydream11 profile image
Dollydaydream11 in reply to silverfox7

Thank you for replying, I am vitamin d and B12 deficient but I’m on protocol for both, my last vitamin d test it was 183nmol/l so up where it needs to be.. I self inject B12 every other day as have neuro symptoms and drs won’t help, I take folate and b complex, magnesium and selenium.. I’m at a loss as to what else to try, since starting B12 injections I have improved enormously but after 17 months I’m stuck and seemed to have stopped improving.. starting levo 7 months ago helped a bit but as I said I’ve stopped improving, my hair still comes out, seems to have started thinning around my hairline now, skin is still dry and I’m still in pain all over and so fatigued.. I apparently have fibromyalgia but I’m not convinced it’s not my Hashimoto’s/thyroid causing the pain.. I’m just at a loss and want to be better

silverfox7 profile image
silverfox7

My understanding is that adrenals need to be addressed first but I've no experience with that. Often it can be we need to do things in the right order.

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