I'm on 100mcg levo, now worse than before levo. With these results 'should' I be feeling well? Is the FT3 a true reflection or does the RT3 and DIO2 alter what happens to it??
Many thanks
Written by
misslissa
To view profiles and participate in discussions please or .
I too have Dio2 gene. I took levo for a year, my bloods looked Ok, my symptoms remained although they were not as severe.
I was prescribed ndt 2 years ago. My remaining symptoms cleared up and it felt like I gained 30 iq points overnight. I hadn't realised i still had brain fog on levo as my mind had been functioning better but when I took levo it was like drawing net curtains from a window and suddenly realising the world was a lot clearer.
On ndt my t3 is high in range and my T4 is below range (both free).
So, I don't know the answer to your question but I would suggest you ask for a trial of t3 based on your Dio2 gene snp and see if it makes you feel better.
Ndt has taken me from rating my quality of life score from 5/10 on levo to a 9/10 (it was 2/10 prior to diagnosis). I still have some remaining issues around losing the weight that I gained (it's coming off but very slowly) and hair (which has thickened back up nicely on the crown of my head but is not making much of an effort at the sides where I went completely bald! But the hair regrowth and weight loss has coincided with ndt....
Hi, so NDT was what finally helped you? Id say my quality of life was 5/10 pre levo and gradually decreased to 2/10 since being medicated which is obviously not right. X
NDT was a miracle; with levo I had 3-4 day hormonal migraines every 14 days (ovulation and period) but after 6 months on NDT I was (and still am but have always had this!) having a bit of a headache for around 6 hours on the day before my period.
I have lost 1.5 stones in the 2 years on NDT, a stone on just NDT and half a stone with NDT and metformin (which I've been taking since Feb to get over my insulin resistance caused by being untreated for 6.5 years of hypo)
With levo I felt cold 1-2 days a week requiring hot water bottles and a blanket. With NDT I have a couple of evenings with a blankie a day or so before my period.
With levo I had the sudden energy drain exhaustion every 2-3 days. With NDT this has completely disappeared
Some of my hair is regrowing on NDT and I have about 10 hairs on each eyebrow (I'd lost all of them).
As I said in my previous post the main revelation was my brain; I'd thought that levo had cleared my brain fog and wasn't expecting any improvements but NDT means that my brain works much much better. I devise complicated spreadsheets for a living and I'd estimate that work that would have taken 3 days on levo now takes 1.5 to 2 days. I remember things better. I'm not forgetting words. I'm still pants at names but I've always had that problem.....
Obviously I have some remaining issues around my cycle that I'm currently looking to resolve but I don't think that these are 100% caused by my hypo as I've always had a rough time of it. I am also 50 so I must be approaching peri menopause. I am exploring diet and supplements as a way of ironing out these. However NDT means that I function really well most of the time.
Your results are good and you are shown to be converting well, considering you have a mutation on your DIO2 gene but many have this mutation with little negative effect as it depends on the severity of the impairment (or not)..
If you feel so unwell with these results it may be worth asking your doctor to test sex hormones. Doctors aren't usually interested in sex hormone levels until we are menopausal age but progesterone levels can begin to fall as early as mid-thirties, creating oestrogen dominance.
Oestrogen should balance progesterone and many women suffer Oestrogen dominance when levels become unbalanced. Progesterone is used by the body to create cortisol and if stress (emotional or physical) causes cortisol to become elevated, the level of progesterone can drop.
High oestrogen can cause too much sex hormone binding globulin (SHBG) to be made and will bind with T3 (making it unavailable for use) as well as the oestrogen. In this scenario, your thyroid hormone test results would show adequate T3 levels but that T3 would be unavailable for use so creating hypothyroid symtoms.
Yes, you are right. I am wrong because only unbound shows as FT3 and the O/P's adequate result is for FT3.
misslissa,
A high FT3 result with hypo symptoms could be due to a LOW protein carrier (SHBG or TBG ) as this would leave too much free thyroid hormone in the blood stream, which can block thyroid hormone receptors, so enticing hypo symptoms.
I would still recommend having sex hormones tested.
I don't know much about this, but I believe that fT3 figure includes both T3 and rT3. The rT3 exists only to block the T3 receptors, so a nice high fT3 can be misleading.
I'd say these results look moderately ok. Some people feel okay with bloods like this, but the T3 is just over halfway, when ideally you want it in the top third. On T4-only medication you also want the fT4 to be in the top quarter, so you have room for an increase.
This is assuming the standard interpretatio. If you think rT3 is messing up the picture, it might not work that way for you. I'm a person who in the past had perfect looking bloods on T4, and on T4+T3 combination, but I was still very symptomatic, in bed most of the time, not working. When I started NDT I felt enormously better, even on low doses so with very poor blood results. These tests are not the complete story.
To get to that point, you need to work through what the likely problems could be - make sure folate, B12, vit D and ferritin are optimal, get private blood tests if your doctor won't do them. Maybe look into adrenal glands, etc.
I am not an expert on these vitamins, but it seems like all of these are too low? Each one has an ideal way to increase levels, usually with a high dose of the good quality form (for example methylcobalamin for B12, cheaper formulation a will contain less easily absorbed forms). You'll need to stay on a good maintenance dose once you've raised your levels, and you can only really find by trial and error what that is. Being hypothyroid strips you of vitamins, so some ppl need to remain on high doses.
You can search on the forum for more specific advice, or start a new thread and members will comment. Your body can't make proper use of thyroxine tablets until these levels are optimal, so you will likely feel an immediate improvement once your levels start increasing.
When I was diagnosed and put on levo my bloods were "normal" after about two months but I couldn't get out of bed.
The most important blood tests you'll ever have will be if you have a really good day and get tested then. Because then you'll know what all the optimal levels for YOU are.
If you feel crap then something is still not right, could be diet, supplements, vitamins, or immune system flare up.
Personally, if those were my results, I'd need just a tiny bit more medication or increase its effectiveness, coffee calcium and other things are said to decrease the effectiveness as are low B12, folate, Ferritin,D3.
If all of that is fine then I would push for a smidge more.
I don't know what to do, if they offer an increase I'm nervous as I've just felt worse and worse but switching to NDT is a big thing too. I feel my ft4 and ft3 could come up quite a bit yet.
I went to NDT, I don't know anyone at all that feels great on Levo.
But if it's the lactose in the tablets that's making you feel rubbish you get that with loads of tablets. It's tough trying to find what works for you, WP westhroid pure is supposed to be filler free, so if you make the jump, that might be better for you, I need 0.2 TSH to feel good, but we're all different.
I think the DIO2 is misunderstood. I have this faulty gene too and am told I shouldn't feel too bad when I've had reasonable FT results. However, my symptoms tell a different story.
Since I've been on combination treatment of T3 and T4 I have felt much better, but hoping symptoms will improve still further.
Levo does not agree with everyone. You might be one that it doesn't. I was on T4 for years, ended up wanting to die, then stopped taking it and felt better within a couple of days. Now on T3 and improving.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.