Help - can't tolerate t4 t3 or NDT.

[Olsbird]

Hi all. I'm demented (again). Get awful side effects from all the above at very low doses. 25 mcg levo, 1/4 tablet every other day of ndt, 1/4 tablet t3. I just cannot tolerate any of it. Ages ago I had low ferritin and vit d but rectified those. Side effects vary depending on dose but as low as 1/4 tablet ndt every other day my neck felt like the size of an elephant all around and the worst case of mumps ever. I'm now trying half a 25 mcg levo but again still don't feel right. What's wrong with me?! Why can't I tolerate anything?! I was tested for Addison's and was ok so it isn't that. I've always been 'sensitive' to drugs to the point where for years I wouldn't even take paracetamol as I would more often than not I feel worse Ishat my problem or ideas re anything else? Endo been helpful trialling me on everything but he's out of ideas now. And I just moved so inbetween endos at the moment. Thx for any ideas. X

[Singoutloud]

Hello Olsbird sorry you are suffering so badly. The only thing I can offer is that maybe you have some kind of intolerance to the ingredients they use as fillers in the tablets. I'm sure that someone with more experience & knowledge will be along soon to advise.

[Olsbird in reply to Singoutloud]

Thanks. But do you think it's likely I can't tolerate any fillers in any of the tablets I've had? I tried 2 brands of levo, 2 of ndt and one of t3. Same reactions more or less. It's so frustrating! Grrrrrr

[Singoutloud in reply to Olsbird]

Also paracetamol didn't agree either. You may be able to narrow down one of the fillers from the different brands of tablets you've previously taken and a trial of liquid levo could help confirm.

[EbonyEvans]

Hello Olsbird, sorry to hear of your intolerances. I can only suggest it’s the dose change and agree with Singoutloud about fillers. You may be under medicated as well on half a Levo tablet. It’s probably the brand. And hopefully your Endo has left enough time in between your brand changes - your body might be reacting to some Old mixed in with the new. Maybe look into your diet as that could factor into it. I wish you wellness soon.

[Vallillyann1]

I am sorry you feel so bad, I appreciate you feel bad on medication but your t4 & t3 dose are so low, you are unlikely to feel well on it. You could be sensitive to fillers or your body simply may not be able to convert t4 into active ingredients t3.

It's great that you don't have Addisons but that doesn't mean your adrenals are happy. Sensitivity to substances is a very adrenal response. You could consider having a 4 point saliva test done, you have to have it done privately though about £82.

[Kitten1978]

Hi Olsbird ,

Yes, it’s a puzzle, isn’t it? I couldn’t tolerate T4 and ndt but I have no problems with T3-only. Apart from being allergic to fillers in the brand of T3, wich you are using, I can think of the following:

- I agree with Vallillyann1 that it would be worth doing cortisol saliva test. NHS recorgnises only the extremes of adrenal problems: Addison’s and Cushing’s. You could have partial adrenal insufficiency without full-blown Addison’s.

- What exactly are your levels of iron, ferritin and D3? It’s very difficult to increase iron if you are not taking thyroid meds/taking very low doses…Withouth adequate iron and D3 you won’t telerate even T3.

I was stuck on 25mcg of T3 for several months and I couldn’t figure out why. I finally discovered I had severe D3 deficiency. I started supplementing D3 and K2 and I was able to increase my T3 up to 50mcg.

If you have “Recovering with T3” book by Paul Robinson I suggest you read the chapter on Vitamins and Minerals. According to Paul in order to tolerate T3 medication your:

- serum iron has to be over 90ug/dL and ideally close to 100-110 ug/dL

- serum ferritin needs to be at least in the 70-90 ng/mL range

- TIBC (total iron binding capacity) should be at or above the lower quartile of the reference range.

- Transferrin saturation % should be in the 35% - 45% range. PLEASE NOTE: Transferrin saturation % isn’t a test. You calculate your transferrin saturation % using your serum iron result and your TIBC result. Transferrin saturation % = serum iron divided by TIBC x 100.

- 25-hydroxy D test: 50-70ng/mL range (also see: 100stopthethyroidmadness.com/v... )

I also highly recommend this website:

“Low iron causes intolerance to T3-containing medication”: rt3-adrenals.org/iron.html

rt3-adrenals.org/which_bloo...

rt3-adrenals.org/Iron_test_...

rt3-adrenals.org/supplement...

&

rt3-adrenals.org/Vitamin_D....

rt3-adrenals.org/supplement...

Increasing serum iron by eating liver: westonaprice.org/health-top...

Good luck!

[Olsbird in reply to Kitten1978]

Thanks so much for the long reply. Really appreciate it.

[Kitten1978 in reply to Olsbird]

You are welcome.

It occured to me this morning that if there are difficulties increasing T3 meds it's good idea to spread the doses. Instead of increasing the morning dose from 6.25mcg in the morning to 12.5mcg you could try taking 6.25mcg at 7am, then another 6.25mcg at 12pm, then another 6.25 at 5pm. Every 5hrs sort of thing...

Liquid T4, which Clutter suggested, is another option. Maybe you are allergic to fillers?

I do hope you will figure it out and fidn the meication that works for you!

Take care x

[Clutter]

Olsbird,

If you've had the same reaction on all 4 makes of Levothyroxine available in the UK ask your endo or GP to trial you on liquid Levothyroxine which won't have the fillers in tablets which may be making you unwell.

[Olsbird in reply to Clutter]

I've tried 2 brands of levo, 2 of ndt and 1 t3 and I've had the same reaction (more or less). My endo (who was very helpful) thought a filler problem was unlikely given the same reactions. I was thinking liquid thyroxine for no reason other than its the only thing I haven't tried. Thanks. As ever. X