As a result of my last NHS blood test showing my T3 level dropping and Health Unlocked previously advising me that my conversion rate was low/poor, (and having Hashimoto’s and my brother testing positive for DIO2 (Homozygous) and being put on T3), I got myself tested and I also have the DIO2 gene.
Ranges:
TSH: 0.27 - 4.2 miU/L
FT4: 12.0 - 22.0 pmol/L
FT3: 3.1 - 6.8 pmol/L
June 2022
FT4 19.0
THS 0.29
T3 3.9
January 2022
T4 21
TSH 0.02
T3 4.6
December 2021
FT4 21.3 range 12 - 22
TSH 0.05 range 0.27 - 42
T3 4.3 range 3.1 -6.8
As of Jan 2022 I take, prescribed, Eltroxin (Levo) 75mg 3 days and 100 mg 4 days. The drop to 75mg on 3 days a week in my medication may explain why my T4 and TSH levels are a little more in range, so possibly the more reason to be concerned about my T3 level.
Can you advise me; am I right in being concerned that my T3 level has dropped? I was very careful to have the blood test done at the most optimal time (8am, no meds 24 hours before, no biotin etc). I take a full range of vitamins etc. as recommended on this site.
As my other markers are within range I am trying to evaluate if and when to approach my Endocrinologist with a request for T3. She stated in my first appointment that the Trust does not prescribe T3 so I expect it not to be an easy conversation.
I eat a predominantly fish and plant based diet, I’m gf, dairy and egg free as have high antibodies to casein. I eat little carbohydrates/sugar and exercise daily for health and weight management which remains stable, though I am aware I have some of the T3 linked symptoms (mood, memory/ brain fog, fatigue etc.)
Any advise gratefully received.
Written by
Mothebear
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I am very sorry you have the D102 gene. The following link I hope will be helpful and this is an excerpt from it:-
If you have the DIO2 genetic test done and your report shows that you have inherited variants in either one or both genes it may be worth taking your report, along with the research article above, to your GP or endocrinologist and asking for a trial of T3 to be added to your levothyroxine. Remember, all thyroid tests are normal with this variant gene.
Thank you. Last year (mid) for all my vitamin levels and I don’t supplement iron. I have the Homozygous DIO2 hence my question about dropping T3 level.
I wouldn't say that your ft3 has dropped or is dropping. Rather it is following the drop in your ft4. Jan ft4 90%, ft3 40.5%. June ft4 70% , ft3 21.6%. Both hormones have dropped by 20% or there abouts.
This doesn't address the fact that you are an inefficient convertor. I would base your argument for t3 on the disparity of % through ranges of ft4 and ft3. Also outline other steps you have taken to improve absorption, conversion and effectiveness of levo such as taking on empty stomach etc, ensuring all vit levels optimal, going gluten or dairy free for example. These were the arguments that got me t3 prescribed.
That's awesome you take good care of your diet, nutrition and lifestyle.
Fatigue is one of the shared symptoms of low thyroid and low iron. Have you had your haemoglobin and ferritin tested recently? I often wonder which factor is more critical to my energy level, TH or iron. I have energetic days when neither of my thyroid nor iron panel is in the "optimal range". There's still a range below sub-optimal, how low is too low?
If you are still menstruating, do have your iron checked out. I half suspect iron is more important to how I feel, myself.
How are your TPOab/ TGab? Have you managed to calm them down with your clean diet? An over-active immune system can cost energy, too.
I do second shaw's suggestion to present your case with evidence to your endocrinologist. "Shop" for a more helpful GP/endo if you have a choice. I've only just found a more helpful GP at my surgery.
I believe my (pain to everyone else!) diet, exercise, dare I say daily cold shower, supplements, healthy living etc. are the basis for my antibodies dropping, but I guess while I have any thyroid function I will produce them (and assume once there is little/no thyroid function left, so the antibodies will stop being produced).
I just work on the basis of doing what I can to keep my immune system ‘quiet’, and the rest of my body functions healthy.
I'm happy to know there's a kindred spirit in this forum. That's my philosophy too.
I calmed down my Ab to within "standard" reference range ~ 6 months after I revamped my diet and lifestyle, which is still a continuing fine-tuning process. The number has mainly stayed within range. There have been two memorable "flare-ups". And I put it down to "stress". Stress, physical and emotional, is not a topic commonly discussed here. You must also know it is top on the lists of "root causes" and "triggers" for Hashi's.
My first major fatigue episode happened after I climbed the highest peak of Snowdon. No problem on the day, but it took me weeks to recover. My Ab co-incidentally, and temporarily, climbed above the reference range. I blamed my low iron, started eating animal food with the intension of fast iron replacement. That did not help at all, probably due to further inflammation. I felt better after going back to fully plants.
The second one is likely due to stress at work. The upward tick of my Ab is perhaps small by the standard of this community, but "concerning" by my standard. And I feel it.
Stress is the hardest to control. Hope that is not one on your plate right now.
Thank you eiddew….yes there’s an amazing kindred spirit amongst those who share the same life challenges and so much support and help about when you can see the brick wall you might be heading for! Best wishes
'Exercise intensity and its effects on thyroid hormones"
....if and when to approach my Endocrinologist with a request for T3.
As someone who has tested Dio2 /homozygous and needs high dose T3-only to function I would advise that you adopt a more subtle approach than a " request"!
Requesting or asking straight out to be prescribed T3 is likely to be counterproductive since you would be starting from a point where you know this endo does not prescribe T3!
Instead appeal to their ( possible) ego!!
It may be better to ask your endo if they will consider offering you a trial of T3 because you have read in research papers that it can help alleviate symptoms of low T3 resulting from the effect of the Dio2 polymorphism .... this doesn't immediately push the endo into a corner with an immediate "No" response! Hopefully instead, it might open up further conversation giving you time to further explain... and might enable you "to get a toe in the T3 door".
Be prepared for rejection but hope for success!!
Firstly I suggest you write down all you want to ask, or say, to this endo. This will act as an aide memoire...doing this helped prevent me from squawking like an upset parrot in case things got rather fraught!!!
Explain that you have already worked to optimise essential nutrients ( vit D, vit B12, folate and ferritin) in order to support thyroid function
You will need to produce your lab results and back-up research/ articles
"Common Variation in the DIO2 Gene Predicts Baseline Psychological Well-Being and Response to Combination Thyroxine Plus Triiodothyronine Therapy in Hypothyroid Patients"
Hello Motherbear. I am in Bristol too. I saw an NHS endo recently and was refused T3. He wasn't interested in my DIO2 result and told me he couldn't help me! "We don't prescribe T3 to new patients".
My T3 is a bit higher than yours but only because I increased my levo to 125, but my FT4 is now well over range.
I've decided to do my own T3 trial now without doctor support. I will reduce levo and add some T3. If it helps me then I may go into battle with NHS.
You may wish to join the thyroid Facebook group for Bristol and Somerset area.
Hello AndieThank you for your reply. I have had horrendous experiences with an endocrinologist who saw my daughter in Bristol…stated she does not have any thyroid condition (mother, mother’s brother and his son - her first cousin all have Hashimoto’s) and NO NEED TO REASSESS! Impossible to get any GP to then listen.
Finally Haematology arranged as she was so tired and has a blood condition and lo she has Hashimoto’s!
I have an Endocrinologist who stated at my first consultation…. we don’t prescribe T3! But there is an endocrinologist is Cardiff who does!
So I know what I am up against.
My brother lives in Worcester and he is given it now for life and it transformed his deterioration, so I can see where I am heading if I don’t address this. He believes his thyroid is no longer working at all as he has few antibodies now.
This site has pointed out we are in a very difficult county for T3 prescribing, but for me having evidence of the DIO2 gene and then a doctor saying I won’t treat is a bit like saying ‘yes, you have cancer but I won’t treat you’. Questionable on many fronts?
Thank you for the suggestion of the local group.
And if you are self medicating, where are you getting your T3 from?
Amazing how empowering these sites are, and how useful HealthUnlocked is!
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Hypothyroid with High RT3 & Defective DIO2 Gene. On T3 only treatment. No improvements.
Symptoms worse due to cold weather, homozygous for DIO2 gene, on best dose for me? Better when slightly increased T3 but T3 was top of range
Increase needed but do I increase T4 or T3?
Those with Dio2 Dx, How much T3 do you take?
Advice please, do NHS endocrinologists ever prescribe T3?
