DIO2 weight loss

[Rach19]

Hi all,

I was wondering does anyone else with the DIO2 polymorphism gene become exceptionally depressed when losing weight. I have homozygous DIO2, with PMDD, infertility and endometriosis. I’m about 4 stone overweight and want to lose it. It’s not actually that I CANT lose it, but as soon as I do (even just 2-3lbs) I absolutely sob, uncontrollably and am miserable (like during PMDD episodes except I’m currently in chemical menopause so not cycling). It’s stumped both western and naturopathic docs, best we can guess is it released oestrogen quickly from fat cells causing estrogen dominance (I know I react badly to estrogen due to ovulation and hrt causing symptoms). I can somewhat mitigate it with progesterone, but it drives me insane - I become so low that I get scared and end up binging to avoid losing any more weight. I’m wondering if it’s actually the hypothyroidism in the brain that causes this. Has anyone found any supplements or ways of eating which help support this?

I have hashimotos but also secondary hypothyroidism, ‘normal’ TSH which doc is now fortunately ignoring (no pituitary issues viewed on MRI) and my T4/T3 levels are fine. Generally I’m not experiencing hypothyroid symptoms. Thanks if anyone has any suggestions!

[SlowDragon Administrator]

You do really need to get vitamin D, folate, B12 and ferritin levels tested

Are you on gluten free and/or dairy free diet

[Rach19 in reply to SlowDragon]

Yes currently gluten and dairy free although frankly that makes absolutely no difference to me - I’ve done it for years, then had it again, then not again … doesn’t affect symptoms. I know I do, but unfortunately I really can’t afford to. I’m about to be unemployed probably and paying for a £10k hysterectomy. I’ve met a new and very sympathetic NHS doctor who I’m seeing on Tuesday - I’ll see if I can encourage her to do it! Thanks

[Rach19 in reply to SlowDragon]

actually I think maybe my original theory of estrogen loss into the blood stream is correct- albeit the root cause being thyroid still… Ive just been sobbing, pacing the house, anxious, depressed for 5 hours… I took a big dose of my progesterone… 90 mins later I’m dancing round the kitchen tidying it and singing like I haven’t a care in the world…. Doctors need to start learning the links between the thyroid and the sex hormones!

[Mugs19]

I suffered badly from premenstrual syndrome. I was fat and could not diet as I would immediately become unwell. The PMS diet of 3 hourly starch and progesterone injections changed all that. You only need 30 calories of starch but it helps if you have protein with it, such as houmous, pate, cottage cheese. This keeps your blood sugar at a more constant level. At meals you need to eat smaller amounts of starch to compensate. 3 oz or 100g of potatoes, limit rice to 100g cooked and cooked pasta. If you eat this way you don’t get desperately hungry. My weight gradually came down till I lost 8 stone. No sugar but no need to worry about fats as they satisfy your appetite and you need some. Hope you find this helpful.

[Rach19]

Thankyou. I’ve tried the starch diet but pre: having progesterone (all it did was make me constantly ravenous!) so I think the P is key. I’m basically doing that currently - little and often with decent protein, fat and small amount of complex carbs. That’s great to have a calorie idea thanks! Did you find you were really tearful and miserable when losing weight? It’s so so hard!! I’m currently on tibolone which is progestin, I think post op I will go back to bio identical and hopefully I’ll start to see some significant weight loss but without wanting to die!!

V helpful thanks x

[Mugs19 in reply to Rach19]

the progestin is the problem in my opinion. I was treated with them for years. For the first 3 months I felt better, then got worse and worse, much worse than I had been before I took them. When I read Dr Katharine Dalton,s books I found out that the synthetic progestogens block your own progesterone and though they mimic the function of progesterone to some extent they are not identical and have side effects which in my case turned me into a monsterpremenstrually. Until then my symptoms were mainly physical. At ovulation I would wake and feel like someone had shut a door in my face. Dreadful sinusitis. The week before, I would start with migraine. By the time I started a period and got relief I was tense in every muscle., which just dissolved as the period got going. I was put on Cyclohest pessaries and was better but needed high doses so was transferred to Gestone injections, 100mg daily. I got my life back. Went back to work. The drug companies have convinced doctors that there is no difference but the progestin used ina pregnancy test caused abnormalities in babies. The molecule resembles testosterone rather than progesterone in that test. I feel for you but it has become harder to find doctors who know the difference and will prescribe natural progesterone. Progestogens are just not the same. But you can’t swallow natural progesterone. Like insulin. Hope things improve for you. Big hug , Mugs.

[Rach19 in reply to Mugs19]

oh I know all about progestin/ progesterone/big pharma problem … I run a Facebook group dedicated to this issue! I do feel much better on natural progesterone and I can get it prescribed to an extent (ie I can but not in high enough doses due to stupid NHS guidelines!) plus although I can cure my PMDD with it, it does not help my endo pain (in fact I think it makes it worse). Currently I’m on progestin as it’s in my tibolone as it’s the only way I can get any testosterone currently, but I take bio identical on top of that. There’s just one issue with the whole ‘I have PMDD/ hormonal imbalance because of years of progestin’ narrative for me … I’ve never been on the pill! The hormonal imbalances in my body have been there forever (started period at 10, horrific PMS and acne and pain so bad I’d pass out). Personally I think it’s because of the DIO issue! It’s most certainly generic as women in my family have been having these problems for many generations.

[Mugs19]

Mine also was there from start of menstruation. I had horribly painful periods. And occasionally the PMS rage to go with it. Once at school I dressed down a teacher( who deserved it) on a corridor in front of everyone. The whole school just stopped and froze in shock as I was normally quiet and introverted. I had other symptoms which I now know were probably my Hashimotos but it remained undiagnosed. When I finally was treated with progesterone I those symptoms improved till eventually my Graves started and my GPS took away my progesterone. The symptoms are pretty much inseparable from each other. Dr Dalton said there was evidence of Thyroid disturbance in women with severe PMS. I have told endo I think it is all the same thing and he doesn’t disagree with me. Such a pity they are so over-specialised and compartmentalised that nobody recognises what is wrong with us.

[Rach19 in reply to Mugs19]

I completely agree. Lots of scientists, functional medics etc all believe it stems from the thyroid and/or pituitary gland, my Co founder of our Facebook group has been reading and researching people like Katharine Dalton for years, but due to the misogynistic stance of healthcare for decades I doubt we will ever find the cause of it - people just don’t care enough. I wonder how many PMS/PMDD/endometriosis/PCOS etc women have undiagnosed hashimotos, graves, polymorphisms etc and if they were to actually do blood tests and brain scans during various times of the month they would literally SEE the differences between women who suffer and women who don’t?

I’ve had 20 years of ‘maybe eat a bit more broccoli and go for a nice, long walk’ as if I haven’t tried every lifestyle, diet, supplement possible… constant gaslighting and dismissal of pain and ‘it’s normal’ or ‘it can’t be THAT bad you’re just sensitive’

I have well and truly just had enough of it all now - the whole lot is going!!

[Mugs19 in reply to Rach19]

I had years of that patronising condescension. One endo assumed that as I hadn’t been married very long when I saw him, I had a) married the wrong man and b) disliked/ was afraid of sex. Wrong time of month: I told him a good orgasm was a welcome relief from pain and that I enjoyed sex with my husband. So then he decided I was a nymphomaniac. There was an arrogance that meant “If I don’t know what is wrong with you then it must be you who has a mental condition.” My sister-in-law had endometriosis and never married. She had to wait till her mid forties for a hysterectomy for relief. A counsellor at aWell Woman clinic told me she had paid £30,000 pounds worth of fertility treatments before an enlightened Gynaecologist told her she would never have a baby as she had endometriosis. That was 45 years ago.

[GlowCoach Administrator in reply to Mugs19]

My goodness me that is just appalling. I'm so sorry you have been treated in this way!