Experiences of moving from NDT to T3 only or T3/T4 combined?

[Flossles]

Hello everyone,

Can people please share their experiences of moving from either a combo of synthetic T3/T4 or NDT to T3 only please? I've been on NDT since June last year because levo alone made me feel so unwell and did absolutely nothing for my hypothyroid symptoms, it worsened them! I've been self-medicating with NDT and first started off on NP, it did help a little and I wasn't housebound anymore and could start to go out and do more things (I was still greatly fatigued and foggy headed though), I even started college again in September but then it came to light that NP thyroid was making people unwell again and so when it came to ordering more NDT I chose to go with Armour. Since being on Armour I immediately had to drop from 1.5 grains (that I took on NP) to 1 grain as I got jittery, heart palps, dizziness and crushing fatigue on 1.5 grains. I was stuck on 1 grain for months unable to budge but feeling worse than ever, my hair is thinning and my college work is suffering too because I literally can't think or sit up and do work. I'm devastated and fed up of all of these NDT brands, it's too risky for me staying on a med that might make me feel better one month but then feel terrible for years on end because of reformulation or whatever, it's scandalous.

I take my vitamins and minerals etc, it's nothing to do with those. This is purely my body not being able to handle the thyroid meds I tired so far, with the execption of NP, it did make me feel all kinds of crazy and crap for a litle while but my God I was better than I am right now on Armour. I think I'm going to just give NP another go (even though it's the smelly batch that seems to make some not feel right) or try T3. I can't o on like this anymore, I just want to feel awake enough to do my college work.

My latest blood work on Armour that I had in January is:

TSH - 3.23 range(0.27-4.2)

FT3 5.72 range(3.1-6.8)

FT4 12.6 range(12-22)

RT3 14 range(10-24)

FT3:RT3 ratio - 26.6 range(>15)

On NP in October my TSH was 0.054, FT3 6.88 and FT4 12.5. I still wasn't feeling great but like I say, I was better than I'm doing now.

Any help or shared experiences would be hugely appreciated!

Ali

[Lalatoot]

It may be that a combo of levo and T3 would suit you. With a combo you can adjust the T4 and the T3 to suit your personal needs rather than having them in a fixed ratio as in NTD. Some folks need their FT4 and Ft3 well over half way in their ranges. It could be that you are one of those and are needing more T4.

[Flossles in reply to Lalatoot]

Hi Lalatoot . This is what I've been thinking for ages, or to add T4 to my NDT but I'm terrified to be honest as I was so unwell on levo alone that it's put me off trying it. I need to do something though but it's scary going it alone. The past couple of nights I've added 1/4 grains to the 1 grain I already take and that still makes my heart pound and it wakes me up through the night. Maybe I should go back to 1 grain and 25mcg of levo?

[Lalatoot in reply to Flossles]

Flossies When we are on levo alone we often feel unwell due to the lack of T3. I spent 4 years feeling ill on levo alone. Now I am on a combo I feel so different and so many symptoms have gone. The symptoms that are lingering I think are down to me having FT4 too low.

Our body needs a balance. If your instinct is telling you try some levo then trust it.

[Flossles in reply to Lalatoot]

Thank you for replying, this whole thing becomes so overwhelming, scary and isolating. I'm going to lower my dose again back to 1 grain instead of the 1 and 1/4 grains I've been taking the past couple of nights. I have a packet of 50mcg levo from when I took it last year so was thinking to cut in half and add 25mcg (or there abouts) to 1 grain. Tbh I really do think the Armour isn't agreeing with me but I only have that or some Naturethroid left but I'm not taking Naturethroid after all the problems that came with people getting hypothyroid from it again.

Also, how are you feeling now? Do you have relief from most symptoms on the dose you're on?

[Lalatoot in reply to Flossles]

I am still need ing another levo increase I think but will need to wait till bloods next week and then see.

I know from on here that some need both Ft4 and FT 3 well over half way through range and I think that I will be similar. Before I upped my levo dose my Ft4 was 0% through range and my Ft3 74% through range. Will see what bloods say next week.

The improvement has been that I can now get out of the house and start to do things again. I still need to limit what I do but I am beginning to feel like me.

[shaws]

The following, which I hope will be helpful, is by an Adviser to Thyroiduk (now deceased). He only took one blood test for the initial diagnosis and thereafter it was small increases and taking notice of the relief of clinical symptoms. He'd never prescribe levothyroxine, only T3 or NDT. (natural dessicated thyroid hormones.

nebula.wsimg.com/e0c9c9ed95...

[Flossles in reply to shaws]

Thank you shaws , I wish I could read it but my brain fog and fatigue is that bad again that I'm struggling to concentrate on anything - hence my college work suffering too.

[Gingernut44]

Your October results were better than your latest ones. Your FT4 is very low, perhaps you need it higher. Why don’t you try adding some Levo to your NDT, say 25mcg to start with to see if that helps. You can always add more later. It’s all trial and error

[Flossles in reply to Gingernut44]

Hi Gingernut44 , yes the results from Oct last year were when I was on NP 1.5 grains, I still wasn't feeling great at all but I was doing a bit better than I am. I've been thinking about adding levo to my NDT or trying a synthetic T4/T3 combo for a long time but I'm scared after levo did nothing for me but made me even sicker. I've been trying to up my NDT again but on this Armour I can't get past 1 grain without my heartbeat pounding and waking me up through the night as well as increased crushing fatigue (I've not left my flat all week) and dizziness. I saw someone saying they have atrial fibrillation when they up their NDT and I think that may be what's happening with me, although my heart rate doesn't go too fast, it just beats harder and more irregular. I'm so exhausted

[Gingernut44 in reply to Flossles]

I feel for you- I’m also having problems with my levels and symptoms. I’ve tried NDT but had nasty side affects, I think it could be down to the fillers, and tried adding a quarter of a tablet of T3 and had terrible AF, my heart was bouncing all over the place. I’m so confused now that I don’t know what to do next.

I hope you get your answer soon

[Flossles in reply to Gingernut44]

Sorry to hear you're having such a rough time too.

What NDT did you try and what are you currently taking? Did you also try adding levo to the NDT?

I'm tempted to stop taking it all together, I did that when I was on levo last year and I immediately felt better but then felt worse again so I know it's probably not a good idea, it's all just too stressful.

[shaws in reply to Gingernut44]

Try taking one anti-histamine tablet one hour before NDT is due. If you have no symptoms, you could be sensitive to the fillers/binders in it. You'd have to try another NDT.

[Gingernut44 in reply to shaws]

Hi shaws Many thanks for the suggestion, I’ll give it a go

[shaws in reply to Gingernut44]

It is surprising that fillers or binders in the tablet may cause us problems but some do.