Recent events have made me review my thyroid treatment and I clearly need extra T3 in some form rather than just Levo. I'm pretty long term Hashi's (25yrs+) and have one copy of the DIO2 gene.
Some years ago now I tried NDT, which definitely improved my health and wellbeing, but ran into difficulties with an Endo wanting my TSH within the normal range and getting hyper symptoms when probably still hypo.
I have other conditions of Ehlers Danlos Syndrome, dysautonomia, POTS, several sleep disorders, hypertension to name a few.
My dilemma is, should I just reduce Levo and add some T3 - Not sure GP would be happy and stop the liquid Levo I get now? Or, go the whole hog and switch to NDT? Bit of back history is that last time I tried this I had a terrible experience. Went massively hypo and extremely ill after a few weeks of no meds at all.
Time factor is another thing, as although I can no longer work I have sons wedding at the end of the month, then a family visit and a holiday booked in November and I can't afford to be non functional for any of them.
I'm almost still traumatised from the last disasterous switch that it's put me off even thinking about it until now. T3 can make me weak for some reason so it will have to be a very slow introduction.
So do I go NDT or added T3? I've looked at the Drs list and there's noone NHS and not even really private in my area. Do I go it alone? All of this is bouncing around in my head and I can't make sense of it to make a decision, so what do you think please?
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Jaydee1507
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With a wedding at the end of the month I think I’d try to avoid dose change/ medication change until after the wedding. If possible. Have you tried changing timing? For example taking Levo at bedtime. It’s unlikely to be a long term solution but may help a bit during warm weather? If not maybe add a tiny bit of T3 (5mcg) to current dose of Levo that you can quickly reverse if it proves to be the wrong thing… but I’m no doctor!
Thyroid test 25/7 a weird result for me following dieting on 140mcgs liquid Levo. Had taken Levo just earlier that day due to being unaware was going to have test. Have dropped 15mcgs on GPs insistence but now more hypo symptoms. I take all at once, on it's own, first thing in morning an hour before anything else.
TSH .03 (.27 - 4.2)
FT4 25.8 (11.1 - 22)
FT3 5.2 (3.1 - 6.8)
Vitamin results taken in the past 5 months at different times. Some have no ref ranges as hospital results.
Ferritin 145 (had an infusion a few years back)
Folate 10.2
B12 557
D3 not tested.
I've recently started supplementing with Thornes Basic B, will add some extra 1 mg Folate in a week or so. Also D3 5,000 with K2. Selenium 200ug, Zinc Citrate 30mg.
Definitely don't always get same brand Levo.
I'm not strictly gluten/dairy free. Don't eat bread as a rule as low carb, don't keep milk in the house but do sometimes have it when out. I have in the past had a very 'clean' diet with no dairy, gluten, soy or processed foods which was difficult to maintain following an operation. Could you please explain the need for no dairy/gluten?
Levo taken all at once first thing in the morning an hour before any food/drink.
Interesting that NDT doesn't suit some Hashi people. What would be the effect of raised antibodies please?
I had to stop work due to non functionality basically aged 49, now 58 and mostly housebound, very low energy, poor, slow brain function etc
Yup, I've been completely flattened by it at times. The weird thing is that I still look like I am hypo, puffy face n all. It's not just the fatigue but the terrible slow functioning and many other things. If I could at least get my T3 numbers up I would feel a lot happier that the rest is down to POTS etc
I was able to lose weight on my previous Levo dose. Have dropped it by 15mcgs and the weight loss has stopped.
I really don’t have an answer but Im sorta in the same boat I don’t function at full capacity anymore and I don’t know if my hypothyroidism is 100% to blame because I deal with multiple immune issues and the medication to deal with them is pretty potent.
My biggest problem in getting proper treatment is my Endo blames my PSA and meds for my on going issues and my Rheumatologist blames my hypothyroidism for my on going issues and because of this I can’t make any traction in my health…. I’m just thrown away like medical trash and I deal with my issues alone or don’t deal at all pretend all is well until I crash and burn and then I start the loop all over again … I feel like a real life ground hog day where you relive the same thing over and over … agh. My primary Doctor is useless and won’t deal with anything thyroid or PSA.
Oh Batty I'm so sorry. I know those feelings well. I've buried my thyroid issues for years now due to a bad experience but if I'm going to make anything of the rest of my life I need to grab the bull by the horns.
Any other condition is always going to come into play. Mine have certainly complicated my life a lot!
My plan ( I think, unless told otherwise here) Is to get my vitamins to optimal levels, then see where that takes me with thyroid blood work and how I feel etc
I'm lucky in that I can afford to get vitamin levels tested and buy what I need. Can you maybe change primary doc to one who's more accommodating? Can you get your vitamin levels tested from an online source like we can in the UK?
I really did crash badly when I ended up getting medically retired. Should have revisited it all then actually.
Im sure if I push my primary doctor I can obtain testing for most of myVitamins except maybe Vitamin D for some reason this is the hardest test to obtain from any doctor I have seen over the years and to do it on my own is pricey and I already pay for my own FT3 test that my Endo just ignores the results.
I don't know the actual statistics but I believe the majority of people don't have great Vit D levels. Maybe just add a supplement if you can't get it tested online? Not ideal, but it should cover that base.
See my reply to SlowDragon further up. Results etc are there. It went above the ref range and freaked my GP out. This was a weird result though as I had been doing an intermittent fasting diet and also (unusually) taken meds pre test.
It does seem that I'm probably not using the hormones I am taking, and what's showing in my blood.
Looking into gene issues I have one copy each of DIO2 and also DIO1 plus one copy of MTHFR. My B12 results have always looked reasonable on paper. I have got them really up at one point and it made no difference. Maybe Folate is my issue which is never high in range. Also may not be able to use what is showing in bloods? I think I read that somewhere on here but could have been dreaming.
Have recently started on all this good stuff: Thornes Basic B, will add some extra 1 mg Folate in a week or so. Also D3 5,000 with K2. Selenium 200ug, Zinc Citrate 30mg.
I think my plan for now is to limp along (actually literally!) and get the vitamins right. How long before I should retest bloods for them?
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