I have had the DIO2 genetic test ( Regenerus Labs ) and am scheduled for a counselling phone call next week.
I do not know the results of the test but I either have the gene ( for hetero/homozygous polymorphism) or I don't.
I just wanted to know what sorts of things I should ask about when I get the phone call depending on what the result is, I've paid about £65 for this "chat" and don't want to waste the money.
Never having done this type of test before I'm a little in the dark, also do they email you the results when you've had the counselling because if I have the faulty gene I was hoping to use it as evidence when I next see the endocrinologist as one of the reasons to be prescribed T3 as opposed to having to self source.
Many thanks.
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Thank you SlowDragon I'll just wait and see what they say, as you have suggested they will probably have some ideas for me to follow going forward which will depend on the result of the test.
You get about 20 mins. My call explained that I have the DIO2 gene and she talked about ensuring you have enough vitamins and also food intolerances. She sent my an email directly to me after the call with the attached report. I then printed it off and made an appointment to see my GP who was very pleased I had this report, as he had been fighting my corner with an NHS endocrinologist to prescribe T3 for me. I will be seeing my NHS Endo this Friday to hand him a copy of the positive DIO2 report. I’m looking forward to seeing his face when I give him this news. He actually said I needed a physiological assessment not T3!!! These Drs can be dangerous to individuals. I had a T3 trial privately in the mean time and the difference in my health has been nothing short of a miracle.
If you are positive DIO2 I do hope printing copies off and then scanned onto your NHS file will certainly help you. However, I’ve read some Drs dismiss this vital gene information as they don’t understand it.
I too have self sourced T3 and am still working on the dosage, I have had no help from either the endo or the GP ( GP knows I am taking this hormone but are not prepared to test levels of T3 in relationship to T4) .
I am waiting with trepidation for the results because on the one hand I am hoping I do have the gene mutation because it will at least go some way to explaining my T4/T3 conversion problems but on the other hand a bit scared because of the difficulties obtaining T3 on the NHS.
I'm glad you got the help you needed once you were found to have the DIO2 gene mutation.
I have only just had to wait over a week( many on this forum have said allow at least 3 weeks for a result) for the email asking me to pick a date for the counselling so now I'm worried it's going to be negative because the results are in so quickly!!
I do hope this is your answer. It certainly was for me. Loads of lightbulbs switched on about my life and the 11 years I was on Levothyroxine alone and the struggle I had with it.
Even if it’s not this gene fault for you I’m sure there are other reasons people can’t convert well.
My sister had the gene test too. She has had thyroid cancer and it’s now been removed. She has problems and doesn’t convert well. But my conversion is poorer than hers. She doesn’t have the gene fault her report came back as. But I do.
I got my T3 privately. It’s very important to get your dose and levels right. I take 5mcg T3 three times a day now. Started as twice a day. I still take 75mcg T4 but I don’t know why as I can hardly convert. On T4 only my results for converting was T3 3.9 (3.7-6.0). Even increasing Levothyroxine significantly I couldn’t get above 3.9.
It took 15 months of being housebound to finally get T3 privately for me. I lost my dream
job too. The NHS for me were useless to say the least. I feel like I’m still in a battle with them. But now I have T3 and my health i feel is better than it’s been in years.
So your regime is very similar to mine. Maybe you’re just on slightly too much T3. With your T3 being 6.5 and near to the top of the range. I’m guessing you left some hours between your dose and BT too. So when you take it, it will go above the range. However, your TSH is critical to highlight if you are slightly over. Do you know your TSH. If I go a fraction over my levels I get very weak almost immediately. This was proven by blood tests. I know now when I’ve gone over. Could I ask what brand you are on. I’ve tried a few. ThyBon 20mcg, Sigma 5mcg, Mercury Pharma 20mcg and Mayne Pharma 5mcg. For me the best are ThyBon Henning that I get privately and Mayne Pharma 5mcg from the NHS. The 20mcg I cut into quarters also with a scalpel. The worst was Sigma 5mcg for me as my skin erupted and it sent me over medicated very quickly.
Hi again my TSH is suppressed 0.007 ( 0.27- 4.2) But I don't really feel overmedicated.
I have tiromel from Turkey which I cut into quarters, I can't really cut it any other way with the pill cutter I have, maybe I could halve those with a scalpel and take a quarter in the morning and two smaller doses later on.
I took the last dose 8 hours before my blood test but if I'd left 10-12 hours maybe the T3 would have been slightly lower.
My T4 is lower on the T3 even though I haven't changed the dose (75mcg) so I don't really understand why taking T3 lowers T4.
I have introduced any increases very slowly leaving about 3-4 weeks between any increase in the hope that my body wouldn't have an adverse reaction to the increase.
I do feel a bit abandoned by the NHS though, and they seem to be able to completely ignore patients who have to self medicate, I do wonder how many people are completely under the radar with regard to self treatment.
Yes, it would be difficult to reduce your T3 while cutting 25mcg into quarters. Maybe next time you could get 20mcg. I got my private T3 from Germany with a private prescription. Only cost £60 for 200 tablets of 20mcg and they are good. So they’ll last over a year. Any chance your GP would write you a private prescription for T3. Then you could get them from Germany. I could give you more details if you ever need it.
My T4 has gone much lower too on T3. It was 14.4 top of range now it hovers around 10. Which is middle of range. I haven’t changed my dose either. I think it’s something to do with taking T3 but why I’m now sure. That’s another question I need to ask my private Endocrinologist. I’ve just received a letter in today’s post saying my NHS Endo appointment this Friday has been cancelled. I phoned to book another and they said next March!!!! What!!!!
I felt and still do feel abandoned by the NHS. If it wasn’t for my private Endocrinologist I think I’d still be in a wheel chair. Now I’ve joined a gym and just off there in a bit. This time last year I could barely walk.
With your TSH suppressed be careful as NHS won’t entertain that. My latest TSH was 1.22 (0.35-5.56 ). Although since that test I’ve increased by a third dose of 5mcg at night. I’m also sleeping better with this positive advise from my private Endocrinologist. I started feeling weak again after the gym but this week I’m firing on all cylinders.
It sounds like you’re doing everything sensibly and taking it cautiously. I think you may feel better if you slightly reduced your dose but how on 25mcg could prove difficult I guess.
Hope your DIO2 test is your answer to all this. Don’t be too down if not. Many people have conversion issues without the gene fault, like my sister I mentioned earlier.
Try and get your TSH in range albeit top of the range if you can.
The fact that your NHS appointment has been delayed by 5 months just about sums up what the NHS thinks about thyroid problems, I think they class them a totally insignificant!! You have my sympathy.
Both GP and endo refused a private prescription even though both acknowledged that I appear to have a conversion issue, endo said to buy my own T3 off the internet ( 2 endo's actually).
I would have preferred to buy from a legitimate pharmacy in Germany and pleaded my case but still refused. So at the moment I am having to self source wherever possible and that appears to be 25mcg tablets.
I think the next blood test I do I shall leave slightly longer after taking T3 before I do the test to see if that makes a difference.
I don't think I shall have a TSH in range whilst I'm taking T3 so I'll probably have a battle over that too!
I have been keeping notes on my BP, temperature, sleeping habits, palpitations( lack of!) since taking T3 and I am thinking of doing a cholesterol test to take to the next endo appointment just to prove that taking T3 is not "a lifestyle choice" as was suggested when I last saw the endo. My cholesterol was mega high, ( 9sih at the last test) if that has reduced significantly then that will be another tick in favour of taking T3.
Good luck with your improving health journey, and your sister is very lucky to have a sister who can empathise with her predicament.
Funny to say about Cholesterol. Mine has gone up from 5.2 to 6.7 since starting T3. I’m confused about it. I eat well. I eat mostly a plant diet. Cholesterol is the main reason I’ve started the gym 3 weeks ago.
I will get my cholesterol checked again in 4 weeks along with my TSH,T4 and T3 plus cortisol.
Something I have forgot to mention to you is that due to my very low T3 I also had low cortisol issues. So low they thought I had Addison’s at a couple of points last year. Have you had your 9am cortisol checked at all. As soon as I started T3 my cortisol bounced back as well as my thyroid levels. The GP was amazed by that as he openly admitted to me that he had no clue about T3 and the positive effects it can have. My sister also has very low cortisol. Everyone needs optimum cortisol for strength and fighting off any illness. It’s our natural steroids.
Yep 5 months. Crazy and very annoying. They said the whole clinic has been cancelled and they need to reschedule everyone.
I do hope you get sorted. Where are you. My Private Endo is in Oxford if you require private prescription and advise. All in all it wasn’t that expensive. It cost me £650 in total. To see him twice, 2 phone consultations and a years supply of T3.
It's not the spectre it is made out to be by the medical profession, (in my humble opinion anyway) have a look at the blogs by Dr Malcolm Kendrick he refutes the cholesterol problem completely he has also written some good books about cholesterol.
Also I'm not sure how old you are but if you are anywhere near the menopause it is quite common for your cholesterol to rise, it can act like a weak oestrogen so I suppose it makes sense that as our own natural oestrogen falls the body responds by producing more cholesterol ( there is very little correlation between food intake and cholesterol levels as your body produces most of the cholesterol in the liver).
My cholesterol only started to rise when I started going through the perimenopause, and I was temporarily on HRT patches when it went down by 25%.
There is also quite a lot of evidence that suggests the highest mortality in older women is in those who have the lowest cholesterol.
Couldn't see any recent vitamin results on previous posts. When were these last tested?
What vitamin supplements do you currently take?
Are you on, or have you tried, strictly gluten free diet?
I tested positive for Heterozygous DIO2. This did help get T3 on NHS......after 26 years of hell on just Levothyroxine.. More on my profile.
McPammy ......Having DIO2 doesn't mean we don't convert in most cells, but it means just the brain struggles to convert and therefore needs addition of small dose of T3.
So most people only need small doses of T3 in addition to Levothyroxine. As activity levels improve, once stable on T3 it's common to need increase in Levothyroxine
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.
I don’t get it. As I know I can hardly convert T4 to T3. Even when my Levothyroxine was increased from 75 to 100 I still couldn’t get above 3.9(3.7-6.0). So any increase with Levothyroxine would just not be able to help me. I have had bloods tests when on T4 alone. My T3 was rock bottom even when increased. And when increased on T4 alone my TSH was suppressed. Saying no more T4 as it was above the range now. Give me T3 please.
Oh ok. I shall be interested if I could. For all the 11 years I was on Levothyroxine alone I had to constantly reduce. Originally I was on 150. Then 125. Then 100/125. Then 100. And finally just a mere 75. All very odd to me. All through these doses my T4 was either above or just on the ceiling of the range.
My most recent vitamins were tested just before I started taking T3, towards the end of July.
They were :
Vitamin D 65 ( 50-150)
Folate 8.5 ( > 5.4)
ferritin 75 ( 10-291)
B12 691 ( 181-910)
Vitamin D had gone down a little ( I had been taking 2000iu daily ) but I increased it back to 3000iu daily as that level improved it to around 90 previously.
I have been strictly gluten free for just over a year, I also take K2 with D3. magnesium, vit C, zinc and selenium and a B complex that contains methylcobalamin (not sure of the spelling! ) form of folate not folic acid.
I posted these vitamin results before starting T3 just to make sure they were ok, I also made sure that I had a big enough supply of T3 to ensure I wouldn't have to start and then stop within a few months
Thanks, I just can't afford to have full vitamin checks every time , but I will get them done next time they are on special offer, I've already spent a small fortune on blood tests as my GP only managed to get TSH tested despite asking for antibodies T4 and T3 each time my tests were sent in.
I’ve just read the info regarding the test and as far as I can tell it says the results cannot be given out to the general public but will be sent to your doctor? I don’t want mine to go to my doctor as he is unsympathetic.
Those were my feelings too, I wanted to be in control of the information, that was why I wanted to access the results first myself, anyway I have tested positive for the gene so I am hoping that I can use it as evidence that I need T3 on the NHS when I next see my endo in December.
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