Thinking about taking NDT with Levo or on its own? - Thyroid UK

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Thinking about taking NDT with Levo or on its own?

DonnyJam profile image
15 Replies

Hey everyone.

I'm currently taking 225mcg of Levo and I'm assuming that my endo thinks I'm in range as far as the TSH says because I haven't had word back from my doctors/endo since my last TFT.

I've tried asking my doctors for my last test results but they say nothing is showing on their system and that my endo must have decided not to keep them in the loop this time.

ATM I'm not happy with my weight situation, I'm around 3 to 4 stone heavier than I was before my thyroid decided to stop working right.

Even through strict dieting and 30 to 40 minutes of jogging on the treadmill most days of the week I still can't lose any weight.

I can only imagine that even though my endo thinks I'm fine because my TSH must be where he wants it, I'm not converting enough or any T4 to T3.

So I'm thinking about reducing my levo and adding in NDT but I'm not completely sure how to go about this.

I imagine my doctor and endo will be against this idea and will not support me so I thought maybe the best course of action would be to try and figure out my levo and NDT so that I'm reducing T4 to the point I can take NDT to put me back to the level of T4 I'm on now but with the added T3?

Has anyone ever done this or is it a crazy idea?

I thought if I could get the dose right then when I go for my next TFT my levels will look ok then I can kind of continue in this way?

Any help or advice on this would be great,

Thanks..

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15 Replies
HIFL profile image
HIFL

I agree that most of us need both T4 and T3. Everyone's ideal ratio is different, but here's one way to calculate a starting dose: tiredthyroid.com/blog/2014/...

I think most need to adjust upwards from this formula, or at least I did.

DonnyJam profile image
DonnyJam in reply to HIFL

Cheers for that, I'll take a look. Will I still continue to have TFT vie the register if they're aware I've cut or stopped my levo in place of NDT?

HIFL profile image
HIFL in reply to DonnyJam

I have no idea. Hope someone else has the answer!

Clutter profile image
Clutter

Donnyjam, why don't you contact the endo's secretary and request your thyroid results with ranges. If they're not forthcoming contact PALS (Patient Advisory Liaison Service) at the hospital and ask for assistance. The Data Protection Act entitles patients to their test results.

1 grain (60mg) NDT contains 38mcg T4 + 9mcg T3 which is bioactively equivalent to 75-100mcg Levothyroxine. You could swap 75mcg Levothyroxine for 1 grain NDT to see whether the 9mcg T3 improves symptoms. Alternatively you could buy T3 and add that to a reduced dose of Levothyroxine.

______________________________________________________________________________________________

I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

DonnyJam profile image
DonnyJam in reply to Clutter

Thanks,

I had thought about asking the endo's secretary but I was a little reluctant after the last time I contacted her, I got the feeling the endo was fairly annoyed that I had gone to his secretary instead of my clueless GP.

Also as far as I'm aware my endo has never tested for my free t3/t4 levels and is only interested in my tsh.

I don't think I can legally buy t3 anywhere in the UK but I would have been happier to take t3 with my usual levo dose rather than trying to figure out ratios of ndt & levo if I could get hold of it.

Clutter profile image
Clutter in reply to DonnyJam

Donnyjam, you can't buy T3 or NDT without prescription in the UK but it is legal to import medicines bought abroad and online without prescription.

It's really best to know your thyroid levels before self-medicating. You can order private thyroid panels from Blue Horizon and Genova via thyroiduk.org.uk/tuk/testin...

_________________________________________________________________________

I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

DonnyJam profile image
DonnyJam in reply to Clutter

If I had a private test done and the results did show I still have problems could I then take my results to my endo and would he then be forced to change my meds or would I still have to go down the self medicate path?

Clutter profile image
Clutter in reply to DonnyJam

Donnyjam, your endo might. or might not. take notice of private results. Even if he did, it's not a guarantee he will prescribe anything other than Levothyroxine. Some endos will prescribe T3, others won't. Knowing your FT4 and FT3 levels gives you a better basis for discussion and perhaps persuading an endo to prescribe T3 if FT3 is low.

______________________________________________________________

I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

Jazzw profile image
Jazzw

I'm with Clutter - get your results from your endo's secretary. Sometimes they're actually more helpful than GPs' secretaries. :)

Secondly, nice idea but it may not work. What tends to happen when you add T3 (either as straight liothyronine or NDT) is that your FT4 result stays low in range and sometimes even the smallest amount of T3 suppresses the TSH below normal range.

Some endos are open to you trying medication you've sourced yourself. Do you think he might be open to that?

DonnyJam profile image
DonnyJam in reply to Jazzw

He seems a little abrupt really, I'm not sure how he'd react to me asking about switching to NDT.

Maybe I just read into things but I have to imagine that he would have already been testing my FT3/FT4 levels if he had any interest in medicating me correctly.

I suppose there is no halm in asking his secretary for my results but will they tell a great deal if they only show TSH levels?

greygoose profile image
greygoose

Do you realise that you are sabotaging your thyroid status by strict dieting and excessive exercising?

If you are having trouble converting, it's probably because you aren't ingesting enough calories. Low calories = reduced conversion. And then you go and use up your precisous T3 on the tread mill when you haven't got enough to begin with. It's countreprodcutive, and won't make you lose weight.

On the contrary, it will probably make you put on more, given that that weight is unlikely to be fat, but water-weight. Most hypos retain water. And any fat will be due to hypo-induced low metabolism, not what you eat or how much you exercise.

My advice would be, before you go changing your hormone replacement, try eating more and moving less - just gentle walking or swimming - your body needs nourishment, not punishment. :)

DonnyJam profile image
DonnyJam in reply to greygoose

I know alot more now about my condition then when I was diagnosed but I still never knew that. I love the gym though it's not just about how depressing my weight issue has become, I used to be about 3 stone less than I am now. I've had spells of leaving the gym and just eating sensible and during those times I was probably eating maintenance cals and I gained weight in those periods.

greygoose profile image
greygoose in reply to DonnyJam

But were you not also hypo? The fact is that exercising uses up not just your T3, but all your hormones. That's one of the things they're there for.

DonnyJam profile image
DonnyJam in reply to greygoose

Yes I'm hypo but until now I believed the only way to combat this massive weight gain was through calorie restriction and exercise. So you're suggesting I stop the gym and instead eat normal and go walking and swimming and I'll stand more chance of getting my weight back down?

greygoose profile image
greygoose in reply to DonnyJam

Yes, because your T3 will rise.

You shouldn't be counting calories, anyway. That's a red Herring. What you should be counting is nutrients. If you have deficiencies, it will be even harder to lose weight.

But hypo weight-gain has nothing to do with calories, it is due to low T3. Increase your calorie (but Don't go raving mad! lol), supplement your deficiencies (but only after testing) and your body will be able to make better use of the hormone you are giving it. T3 will rise and you will lose weight.

There may be other hitches, but you can cross those bridges when you come to them. But low calorie diets and excessive dieting are not the way to go for a hypo. :)

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