Test Results for DIO2 Gene.Comments Please - Thyroid UK

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Test Results for DIO2 Gene.Comments Please

rick2525 profile image
23 Replies

Hi. I have a meeting with Endo tomorrow and would appreciate help with Interpretation of results. It looks like I have the defective Gene but need and opinion

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rick2525 profile image
rick2525
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23 Replies
SeasideSusie profile image
SeasideSusieRemembering

rick2525

Impossible to read on my large PC monitor, it is quite blurry. Can you resubmit with a clearer image.

rick2525 profile image
rick2525 in reply to SeasideSusie

Hi Seaside Susie. have resent test result as two uploads as cant seem to send on one together!

Test result page 1
rick2525 profile image
rick2525 in reply to SeasideSusie

Test result page 2

Test result page 2
DippyDame profile image
DippyDame

Struggling to read this!

Is this supposed to confirm that you have the Dio2 polymorphism (snp) because I cannot see ( make out) an actual confirmation of that or a confirmation that the snp is heterozygous ( from one parent) or homozygous ( from both parents)The latter has some significance.

If you inherit from both parents the effects on T4 to T3 conversion are said be greater than if from one parent.....that is, the rarer CC genotype of the rs225014 polymorphism.

If the snp exists and response to T4 is not good then adding a little T3 may help

You can also check T4 to T3 conversion status by comparing your FT4 result with your FT3 result....

High FT4 with low FT3 = poor conversion

On that basis your results below, 2 months ago , indicate poor conversion and a need for some replacement T3

Your FT4 is very high!

First you must ensure vit D, vit B12, folate and ferritin are optimal

Free T3 4.2 (3.1-6.8)

T4 21.1 (12-22)

Hope I've read the letter correctly

Good luck

PS. I have the Dio2 snp/ homozygous

rick2525 profile image
rick2525 in reply to DippyDame

Hi Dippy Dame. Sorry im having problem uploading photo's

test page1
rick2525 profile image
rick2525 in reply to DippyDame

Test page 2

Test page 2
DippyDame profile image
DippyDame in reply to rick2525

OK so as far as I can make out from your images you have the Dio2 polymorphism ...Indicated by gene variant rs225014 I thought I read type CC in the above copy but it's so fuzzy that it may instead be type CT

Can you please check your hard copy and confirm?

I'll focus on CT now... a

The snp is heterozygous ( type CT)

The normal allele is aT

The risk allele is C.....inherited from one parent only

This means any effect on T4 to T3 conversion is likely to be fairly low

This article will explain in more detail...

paulrobinsonthyroid.com/dio...

Sorry it's a bit of a ramble....not sure why the download is so poor

However, Paul's article will help you join up the dots!

Are you still on 87.5 mcg T4 + 25mcg T3?

If so with labs....

FT3: 5.6 pmol/l (Range 3.1 - 6.8) -- 67.57%

You have room to increase T3 dose.

You will not be overmedicated unless FT3 goes over range.....no matter what TSH is!!

T3 needs to be taken in a regular dose....unlike T4 which can be taken in different daily doses

Good luck for the appointment....

rick2525 profile image
rick2525 in reply to DippyDame

Hi . Thank you so much. Yes you are right it is CT and yes my mother was Hypothyroid but not my father. I am currently on 125mcg Levo daily with no T3 as GP cant prescribe and wont discuss it. So for 2 years i have suffered many adverse symptoms.

DippyDame profile image
DippyDame in reply to rick2525

Time to push for some some T3....

or self medicate!

rick2525 profile image
rick2525 in reply to DippyDame

Hi Dippy Dame. So my first visit to Endo and I went prepared with test results from private and GP ones. He advised that I had a conversion issue of T4 to T3 and has written to GP recommending a 3 month trial period of T3. I dont know what reaction I will get from GP because she has previously said that it was unobtainable from my practice. The Endo has recommended reducing Levo by 25 mcgs and replacing with 20 mcg of T3 split twice daily. Do you think this is excessive? I really appreciate the people who have given me the advice on here to understand Thyroid issues so I was able to hold a meaningful conversation with Endo.

SeasideSusie profile image
SeasideSusieRemembering in reply to rick2525

rick

Is this a private endo or NHS?

NHS prescribed T3 must be initiated by NHS endo for a trial of 3 months (sometimes 6 months) and only then, if trial is deemed to be successful, does GP take over prescribing. Private endo asking NHS GP to prescribe isn't likely to be successful.

Also, reduce Levo initially, a week later add 5mcg T3, don't start on 20mcg it's too much of a shock for the body. Start with 5mcg, give it 2 weeks then if all OK add another 5mcg. See how you feel. Some people like to test at this point because we don't all need that much. Never add more than 5mcg T3 at a time.

rick2525 profile image
rick2525 in reply to SeasideSusie

Hi. Thanks for reply. The Endo is Private and NHS. I have seen him today as a private patient. But he is writing to GP to see if they will take on the prescription. He was very positive and confirmed I can go down NHS route in future.

DippyDame profile image
DippyDame in reply to rick2525

Good, it's a start

I see Seaside Susie has given good advice re adding T3....

We are advised to change only one thing at a time

Also, starting on 20mcg T3 could be a bit like putting high octane fuel in an old Mini!!!

Instead, increase low and slow

I doubt a 3 month trial will be long enough....

It will be interesting to see how that pans out

If it doesn't work out there is always the option to self medicate

It is utterly ridiculous that this should be the case

Meantime, follow Susie's advice and you won't go wrong.

SlowDragon profile image
SlowDragonAdministrator

Impossible to read text on image

Please reattach new picture

Ensure any Dr names are blacked out

Do you have autoimmune thyroid disease also called Hashimoto’s diagnosed by high thyroid antibodies?

Have you had coeliac blood test done

Are you on strictly gluten free diet

originalText

1.1 Recognition of coeliac disease

1.1.1 Offer serological testing for coeliac disease to:

people with any of the following:

persistent unexplained abdominal or gastrointestinal symptoms

faltering growth

prolonged fatigue

unexpected weight loss

severe or persistent mouth ulcers

unexplained iron, vitamin B12 or folate deficiency

type 1 diabetes, at diagnosis

autoimmune thyroid disease, at diagnosis

irritable bowel syndrome (in adults)

first‑degree relatives of people with coeliac disease.

rick2525 profile image
rick2525 in reply to SlowDragon

Hi SD I have posted my results on here previously and i have had regular tests for levels. negative to ceoliac . Yes i am Hashi positive. Been Gluten free over 12 months

test result page 1
rick2525 profile image
rick2525 in reply to SlowDragon

Test result page 2

Test result page 2
SlowDragon profile image
SlowDragonAdministrator

Report looks different to usual Regenerus report …

Did you get consultation with Regenerus to discuss result

Heterozygous Dio2

So you are already on levothyroxine plus T3 ?

How much levothyroxine

Which brand

What time do you take levothyroxine

Do you split dose

How much T3

Which brand

What time are you taking T3

Do you split dose

What are your most recent vitamin D, folate, ferritin and B12 results

what vitamin supplements are you currently taking

rick2525 profile image
rick2525 in reply to SlowDragon

Hi . I am not taking any T3. I'm hoping the Endo appointment tomorrow will lead to it been prescribed. I take 125mcg Levo Accord usually between 3am and 5am daily. My other results were posted on here recently which you commented on. I have had no consultation with Regenerous. This is how my result was sent back in this format from Saliva test. Dippy Dame has interpreted the CT and code as my having inherited the gene from single parent which makes sense as my mother was Hypothyroid but not my father. I am seeing Endo in morning who is from the list supplied by Thyroid UK. I have several Medicheck results for Full Thyroud function to take with me plus Cortisol test result. Plus full blood count and Parathyroid test result inc Calcium.

Also Testosterone result. All these show normal results. So perhaps the DIo2 result may prove poor converter of T4 to T3.

I have been battling with GPs for 2 years. Hoping Endo can help

SlowDragon profile image
SlowDragonAdministrator in reply to rick2525

Apologies…I should have read previous posts

healthunlocked.com/thyroidu...

So last thyroid test

Ft4 was 21.1 (12-22)

Assuming you are prescribed T3

Start SLOWLY

As Ft4 right at top of range…..reducing levothyroxine a little for 4-5 days before starting on just 5mcg T3

How much levothyroxine you should reduce…..difficult to say

(Endocrinologist will almost certainly want to reduce by at least by 25mcg…..)

Assuming 5mcg T3 is ok

After week or so add 2nd 5mcg dose mid/late afternoon

Wait 6 weeks and retest

rick2525 profile image
rick2525 in reply to SlowDragon

Hi SD . Yes the Endo has prescribed T3. I have put the info in reply to Dippy Dames blog. I note your comment re dosage of T3 gradually. I need guidance. The Endo is recommending reduction of 25 mcg Levo and replacing with 20 mcg T3 split in two doses, 1st dose of 10mcg early morning when I take Levo and second dose an hour after lunch. Then retest after 6 weeks. Do you think this should be more gradual? Is T3 more powerful as my last T4 test showed me near the upper threshold of range.

SlowDragon profile image
SlowDragonAdministrator in reply to rick2525

Some people are fine adding 10mcg ….others need to go slower

I would suggest you reduce levothyroxine by 25mcg ….wait 4-5 days…then add 5mcg waking

Assuming that’s not “too much of a whoosh”

After a week consider adding 2nd 5mcg dose T3 mid- late afternoon

After another week or so ….either increase morning dose to 10mcg ….or add 3rd 5mcg dose T3 at bedtime

Many people find small 5mcg dose T3 at bedtime improves sleep. But not everyone does

You may or may not need to add last 5mcg of T3

See how you get on

Retest thyroid levels after 6-8 weeks on constant dose levothyroxine and T3

Last dose levothyroxine 24 hours before test

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

Always get same brand levothyroxine at each prescription

T3 ….

Which brand is this….is it private prescription?

If yes…..Likely to be Thybon Henning 20mcg tablets

Personally I cut 20mcg tablets with sharp craft scalpel into 1/4’s

Other people use pill cutter

I can’t seem to get on with pill cutter

you don’t want T3 capsules as they can’t be split

One other suggestion

Quite a number of members on levothyroxine plus T3 find it better to also split levothyroxine into two smaller doses.

I have been on T3 since 2017

As an experiment….in April this year I Started splitting levothyroxine into two doses, half daily dose waking and half at bedtime. Astonished to discover I find it so much better

Seems to improve conversion rate for many members that try it. I am now slowly reducing T3 from 20mcg daily to 15mcg. Currently at 17.5mcg…..waiting to retest after 6-8 weeks on this dose.

rick2525 profile image
rick2525 in reply to SlowDragon

Thanks SD. When I suggested to Endo to take 2nd dose at bedtime he said no as it would probably keep me awake. Good point re pill. Must check to make sure. Dose T3 pills come as 20mcg or 10mcgs?

helvella profile image
helvellaAdministratorThyroid UK in reply to rick2525

T3 comes in 5, 10 and 20 microgram tablets and/or capsules.

helvella - Thyroid Hormone Medicines

I have created, and try to maintain, a document containing details of all thyroid hormone medicines in the UK and, in less detail, many others around the world.

From Dropbox:

dropbox.com/s/wfhrlmb5983co...

From Google Drive:

drive.google.com/file/d/11z...

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