DIO1 and DIO2 Gene issues

[posthinking01]

Hi everyone - can anyone help please.

I am having issues with an endo who is determined to rely on bloods only when I suspect I might have the above problem.

Can I ask though how would a defect in the above genes reflect on my blood results which are shown below.

Serum free T4 level - Normal - no action 12.7 pmol/L 11.20 - 20.20pmol/L

Serum free T3 level - No action 7.2 pmol/L 3.20 - 6.80pmol/L

Serum FSH level - Normal - no action 96.7 iu/L

Follicular Mid-cycle Luteal Post-menopausal

3.5-12.5 4.7-21.5 1.7-7.7 25.8-134.8

CORTISOL - Normal - no action 55 nmol/L

Cortisol reference range:

6 - 10 am: 133 - 537 nmol/L

Results within the reference range do not rule out

cortisol deficiency or excess. Consider further

investigation if cortisol deficiency or excess

suspected.

I am on steroids so they are saying the low level of cortisol is due to that which I daresay it quite true. They are also saying T3 bit high which can be seen on the range and that T4 is within the normal range ! Despite the fact I am still feeling unwell and have an abdomen so swollen I look 9 months pregnant which I had before when I was undiagnosed. Have had an ovarian check to see nothing nasty going on so has to be thyroid in my opinion.

TSH was not done on the test but I daresay as before it will be negligible.

I am taking T4 70 mcg and T3 5 mcg x twice a day.

I have no thyroid as such as it has atrophied i.e. atrophic thyroiditis.

I am still suspicious due to the above condition that my bloods do not reflect what is happening in the cells - am I right ?

Many thanks for any help.

A

[posthinking01]

what you mean it is very low - she said (the endo) it will be low because the adrenals are not producing any cortisol due to me being on steroids - but actually is that correct surely it show what steroid I am taking within the blood? TSH not sure what you mean they didn't do that blood only FSH.

[SlowDragon Administrator]

Was test done as recommended

Testing early morning, ideally before 9am and last dose levothyroxine 24 hours before test

Last 5mcg dose T3 approx 8-12 hours before test

Presumably you mean 75mcg levothyroxine…..which brand of levothyroxine

What vitamin supplements are you currently taking

When were vitamin D, folate, ferritin and B12 last tested

As you have autoimmune thyroid disease (Ord’s thyroiditis) have you had coeliac blood test done

Are you on strictly gluten free diet or dairy free diet

[posthinking01 in reply to SlowDragon]

Oh sorry I can see why you are querying the 70/75 - on liquid TEVA which I find good and of course liquid cos lactose intolerant you can adjust down or up very easily.

[SlowDragon Administrator in reply to posthinking01]

So if on lactose free liquid levothyroxine….do you split the levothyroxine into 2 doses

Many people on liquid levothyroxine find it better to split the dose

Last dose T3 must be 8-12 hours before test

Is T3 lactose free

Are you saying you are not on lactose free diet ?

Nor on gluten free diet?

[posthinking01 in reply to SlowDragon]

No gluten free diet made me feel very ill and upset my thyroid greatly it was pounding out of my neck very disconcerting I have been tested and not gluten intolerant - but I know the thyroid does not like it - no T3 is not lactose free - I can tolerate a bit throughout the day but when it was the T4 it was going straight through me and I looked so ill - I have pictures - it took me a while to realise I wasn't' absorbing it. Yes on lactose free diet in that I only buy LF milk, cheese, butter spread and cream can't tolerate anything else.

Not not taking the T4 in split does or the T3 away from for test.

[SlowDragon Administrator in reply to posthinking01]

Endocrinologist should prescribe lactose free T3

[posthinking01 in reply to SlowDragon]

I get it from my GP bless him - he is a star - I will see what the costs are and if he will agree. thanks

[SlowDragon Administrator in reply to posthinking01]

Teva 20mcg is lactose free cost to NHS is £63 per 28 tablets

Exactly same price as Mercury Pharma or Morningside 20mcg these two are not lactose free

Most people on 5mcg doses cut 20mcg tablets into 1/4’s to get 5mcg as is so much cheaper

Morningside healthcare 5mcg is £90 per 28 tablets and NOT lactose free

New Roma hard capsules in 5mcg …..are I think lactose free ….no idea what cost is

Check details on helvella detailed ingredients list

Link is on his profile page

[posthinking01 in reply to SlowDragon]

Brilliant so grateful for your help.

[posthinking01]

Hi Slow Dragon nice to hear from you with your experience - the answer is no to all of those apart from all vits Ok and yes 70 mcg I meant to say. I think I am low on cortisol but then my abdomen is looking like cushings it is so huge.

[greygoose]

I am still suspicious due to the above condition that my bloods do not reflect what is happening in the cells - am I right ?

Of course a blood test will not tell you what's happening in the cells. It just tells you what is in the blood. And, if you're taking T3, there's no way to tell how well you convert. You need to be on T4 only to see that.

[posthinking01 in reply to greygoose]

Any ideas on whether 55 cortisol is adequate and downgraded because of steroids.

[greygoose in reply to posthinking01]

Is there a range? What time of day was it tested?

I find this idea of it being downgraded because of steroids rather strange. I don't know for sure, but it sounds to me like a bit of a fob-off! But, I'm not an expert on adrenals.

[posthinking01 in reply to greygoose]

Range 6 - 10 am: 133 - 537 nmol/L - me too that's why I am concerned - because I have odd symptoms of over production of cortisol but this could be as a result of being low...............

[greygoose in reply to posthinking01]

55 with a range of 133-537? I would be insisting on further testing, if it were me! I don't like that at all!!!

[posthinking01 in reply to greygoose]

That's what I thought and it never alters it is always stuck at 55 for months which I find rather strange.

[greygoose in reply to posthinking01]

Yes, I think you need further, more in-depth adrenal/cortisol testing.

[SlowDragon Administrator]

Regenerus do Dio2 gene test

thyroiduk.org/deiodinase-2-...

[posthinking01 in reply to SlowDragon]

Thanks for this very helpful.

[SlowDragon Administrator in reply to posthinking01]

You might possibly get Dio1 and Dio2 tested here

Would have to ask

mthfr-genetics.co.uk

If you already have Ancestry or 23andme tests ….they can evaluate DNA in to plain easy to understand results as well

[posthinking01 in reply to SlowDragon]

Interesting will take a look !