Genetic testing confirms CC DIO2 from both parents

[Mrsdafox]

Hi All

Genetic testing has revealed that I have a CC allelle on the DIO2 gene from both parents, as well as a down-regulated DIO1, SNPs on my CTLA4 autoimmunity gene from both parents, and an up-regulated FOXE1 antibody gene (I have Hashimotos).

I am on the waiting list to see a new Endo (one from the Thyroid UK list) but I want to go armed with as much info as possible. Can anyone share their experience of being on synthetic T3 vs NDT? Am I better to push for one over the other?

But also, given I have little change of being prescribed either, what sort of costs am I looking at to buy privately?

many thanks in advance

To add a backstory- I have been on an ever increasing dose of Levo for 20+ years and seen little change to my energy, most recently having come completely off it, under Dr Peatfield before he retired, due to debilitating brain fog and seeing no deterioration to my health. Despite having in range FT3 I am going to push for combined T4/T3 therapy.

My current levels (Medichecks):

TSH 6.8 mIU/L (0.27-4.20) out of range

FT4 10.4 pmoI/L (12.00-22.00) out of range

FT3 5.28 pmoI/L (3.10-6.80) 59% range

TPO 266 iu/mL (<34.00) elevated/ brought down from 600 with gluten, dairy & histamine free diet

Tg 442 iu/mL (<115.00) elevated

Vit D 86.6 nmoI/L (50.00-200.00) 24%range

B12 37.4 pmol/L (37.5- 188) just out of range

Folate 4.17 ug/L (3.89- 19.45) 1.7% of range

Iron 22.8 umol/L (5.8- 34.5) 59% range

TIBC 70.8 umol/L (45-81)71% range

UIBC 48 umol/L (24.2- 70)52% range

Transferrin 32% (20-50) 40% range

Ferritin 25.4 ug/L (13.00- 150.00) 9% range

Haemoglobin 126 g/L (125- 165) 0.025% range

Total white cell count 8.35 10*9/L (4- 11) 62% range

Platelet count 275 10*9/L (150- 400) 50% range

Total red cell count 4.2 10*9/L (3.8- 5.8) 20% range

Cortisol & DHEA measured via DUTCH test

Total Saliva Cortisol 14.73 ng/mL (9.60- 19.30)

Afternoon Cortisol 0.38 ng/mL (0.4- 1.5) below range

Night Cortisol 6.32 ng/mL (0- 4.8) above range

Melatonin 10.1 ng/mg (10-85)

Total DHEA 1212 ng/mg (500-3000

DHEA-S 16.4 ng/mg ( 20-750) below range

[CoeliacMum1]

Sorry I’m not fully experienced in deciphering your thyroid results.

Is this a recent test?

As many things can change.

Clearly it shows some of the fundamental tests for wellbeing like ferritin, folate & B12 aren’t optimal and I’m lead to believe these really should be in good range for thyroid health anyway.

I’m sure someone more experienced in looking at results will let you know what is required and give you some advice.

I’m slightly confused as you tested positive for DIO but your range is good but want T3 medication.

Did anyone explain this to you as I feel my endocrinologist doesn’t really care for these tests as I wanted to do a dna one, but I do believe that these tests mean as although we carry these genetic snips the test doesn’t actually mean they are triggered and causing us a problem just the likelihood is greater.

For example my Coeliac gene neither of my parents was symptomatic or my daughter although I will of passed it on to my daughter, likewise one of my parents passed the gene on to me.

I was wondering could you tell me where you had your DNA DIO tests done, if preferred we could discuss in private message.

As I’m looking into this, as my GP doesn’t seem overly concerned with T3 I have endocrinologist appointment Monday evening but I feel he won’t do anything either and mines 3.9 the same range given as yours, I’m on 125mcg levothyroxine an increase of 25mcg in last 8wks.

I was 3.6 (3.1-5.5) range in 2015 was on 100mcg.

My TSH is just in range now and FT4 just gone out of range so borderline hyper now I’m guessing , although FT3 is low and feel no difference.

So I clearly have conversion issues so your results have now confused me as yours are fine but you’re wanting T3 medication and still gave symptoms.

Unfortunately in October I couldn’t get dna test as they suspended it although now it’s up and running so now looking at this so was wondering where you got yours from.

[radd in reply to CoeliacMum1]

CoeliacMum1,

The SNIP results are informative if symptoms correspond as act as confirmation of impairment, but SNIP's alone can not confirm the extent of impairment.

We might know of genetic mutations from each parent but the body is good at compensating so results that looks on the surface potentially damaging chance not being as bad as they initially appear.

If symptoms are still felt with adequate FT3 levels then cellular hypothyroidism is pointing to other issues such as deficiency in iron, cortisol, etc. And not many GP's seem overly concerned with T3 because they simply don't understand thyroid physiology! 😁.