Hypothyroid with 2x Dio2 mutation High Dose T4 - Thyroid UK

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Hypothyroid with 2x Dio2 mutation High Dose T4

jjkeurope profile image
9 Replies

Hi All Just looking for advice I have all the hypo symptoms for many years mainly anxiety slow transit sibo mood swings fatigue extremely stiff joints I met a few endos and i was always in low in ref range of t4 and t3 but tsh 1.26 so kinda normal then did genetic tests had 2x dio 2 mutations rs12885300CC&rs225014CC showing that i may have issues converting so a Dr finally prescribed T4 started at 50 built up to 300 over weeks felt nothing until 200 where nearly all symptoms where gone and I felt great after a month the symptoms reappeared so I upped to 300 and again and felt better but again it only lasts a few weeks So anyone else tried t4 in high doses? if so do you need other supports to help conversion? Do adrenals need attention? I have tried t3 but it makes me felt too wired. Currently ferritin high and testosterone but serum trans and tibc are low ? tsh 0.02 ft4 38.5 ft3 7.6 tpo 11 Anyone have any good treatment ideas with these bad genes ?? Is combi therapy the norm for do2 issues?

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RockyPath profile image
RockyPath

Hi jjkeurope,

Yes, with those two snps combination therapy is the norm.

Snpedia notes the following about both of your snps:

“... also known as Thr92Ala, represents a variant in the deiodinase, iodothyronine, type II DIO2 gene on chromosome 14. In dbSNP orientation for this SNP, the more common (T) allele encodes the Thr (threonine) and the somewhat less common (C) allele encodes the Ala (alanine) at this position in the DIO2 protein.

Polymorphisms in this SNP have associations with various conditions in the literature: osteoarthritis, psychological disorders, reduced thyroid hormone metabolism, Type 2 diabetes, and various other conditions.”

You should pursue NDT therapy.

jjkeurope profile image
jjkeurope in reply to RockyPath

Thanks!! Rocky Path Im going to try t3 with t4 thearpy I think i just need to get used to the t3 why is the NDT a non runner Autoimmumme issues ?

RockyPath profile image
RockyPath in reply to jjkeurope

The NDT is biochemically identical to what your thyroid would produce.

Autoimmunity is when the immune response becomes hyper vigilant. Because women have more robust immune response as one of their basic genetic distinctions from males, women are prone to developing autoimmune problems.

That said, the microbiome of the gut is the principal regulator of immunity, but western diets, western food production methods, and western environmental pollutants making their way into the gut through food and water have compromised the gut, and created much more likelihood of autoimmunity.

Children born at the end of the 20th century in Sweden had startlingly high rates of allergies, whereas children in Estonia at the same time were inherently more healthy, Researchers in the gut microbiome realized a connection. Today you can buy probiotics containing a bacteria strain extracted from a one-year-old Estonian girl. The probiotic seeds the gut with a healthy bacteria capable of manufacturing an essential amino acid that powers the cells’ mitochondrion.

Many people can have fatigue and autoimmunity from SIBO and it’s no doubt at least partly due to the kinds of bacteria that are and are not present.

Auntyp62 profile image
Auntyp62

I started taking t4 in 1974 after being in a myxoedema coma and coming out of hospital on a dose of 300 a day and every few months my doctor raised my dose without doing blood tests, relying on looking at me and me saying I was tired and telling me that the drug was artificial and my immune system was stopping it working. I realise now he had no idea and after 5 years I was feeling great but maybe a little wired on 800 a day. Eventually this landed me in hospital with a resting pulse of 130 , exhausted and hardly able to walk.

Fast forward many exhausted years sleeping more than anyone I know and often missing out on life I discovered this site along with private blood tests and the importance of certain vitamins.

My usual blood tests were showing poor conversion to t3 but I don’t have any gene problem however once I started having private blood tests which included more than gp had checked the evidence showed I always had low b12, folate and vitamin d. I also had a gene test done which showed problems with homocysteine and that showed I needed high b12 as I did not use it properly and this could also cause similar symptoms. Raising these with high dosages dramatically changed how I felt and changed my life completely. If only I had known before.

5 years on and I am in complete control with my gp permission. My t3 is usually about 5.8 where it used to be 3 ish to a high of 4. I also find that TEVA works best for me to convert although a lot of people hate it.

I keep my vitamin levels high and feel like my life has only just begun at 68............may it continue.......all on a regular dose of 1.25

Hope this helps

You don't give lab ranges for your results, but it looks as though you are now very overmedicated. Often the symptoms of too much are the same as too little. Generally, you increase levo by only 25mcg every 6 weeks. If you added T3 when you were already overmedicated, no wonder you felt bad. NDT or T4/T3 (or even T3 only) is the only way to deal with DIO2 gene problems. I suggest that you gradually drop back to 200mcg levo and get another blood test after 6 weeks on that dose, making sure that the test is done in the morning (as early as possible), fasting, 24hours after last levo dose. Then post your new results and ask for advice. Having very high FT4 is not good for health and some studies show that it might make you more susceptible to certain cancers.

jjkeurope profile image
jjkeurope in reply to Angel_of_the_North

Thanks Angel of the north yes im going to try reduce and trial T3 and T4 thearpy whats the usual doses for t3 for say150- 200mcg of T4 5mcg in morning and 5mcg afternoon ?

Angel_of_the_North profile image
Angel_of_the_North in reply to jjkeurope

There's no usual dose, you need what you need. You first need an up-to-date set of blood tests with ranges. Currently you look overmedicated so you need to reduce levo and stay on a reduced dose for 6 weeks before retesting. Then your test results should show whether you need to reduce levo further when introducing T3 or just add T3. Generally, you start with 1/4 tablet of T3 once a day for 2 weeks, then 1/4 tablet 2 x a day for 2 weeks and so on

knitwitty profile image
knitwitty in reply to jjkeurope

Hi jj when I started on T3 I took a quarter of a tablet once a day ( morning ) for about 3 weeks and only introduced another quarter of a tablet ( in the evening ) when I felt that I tolerated that dose. My doses were 6.25 mug.

I did try increasing after another month by another quarter of a tablet but felt it was too much.

Low and slow seems to be the best with T3, that is if you decide not to go down the NDT route. :)

jjkeurope profile image
jjkeurope in reply to knitwitty

thanks i have sourced some t3 5mcg so i will try lower t4 down and introduce t3 slowly

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