’Perfect’ bloods but gaining weight and feeling rubbish

[PixieElv]

Hello lovely people

I think my thyroid meds have stopped working.

I have been steadily gaining weight (6kg in 6 months, which is more than 10% of my weight!!) and am feeling tired, frustrated, tearful and don’t enjoy my life (which is really good). I am always hungry but monitor calories and don’t eat more than I am supposed to burn. I exercise and don’t eat junk. I am dairy and gluten free, but eat soya, which my Endo says is fine if eaten 60min away from meds.

I have secondary hypothyroidism, (so TSH is of no relevance). I take 4.5 grains of NDT, which used to work very well but clearly seems to have stopped working. I also take 1 pump of Oestrogel (HRT). I take Vit B and D and last test showed vits as really good.

My recent bloods are ‘perfect’, so I have no idea why this is and what I can do to help myself.

My Endo has suggested going on 4 grains of NDT and 20mcg of T3, which I have started 4 days ago, so it’s to early to say.

Does anyone have any idea what else I could try? I am at the end of my wits.

thank you so much

[SeasideSusie Remembering]

PixieElv

but eat soya, which my Endo says is fine if eaten 60min away from meds.

There may be many here who don't agree with your endo.

Even the British Thyroid Foundation say

Soya

Soya interferes with thyroxine absorption, therefore if you are taking thyroxine you should try to avoid soya. If you wish to take soya, there should be as long a time interval as possible between eating the soya and taking the thyroxine.

btf-thyroid.org/thyroid-and...

How is your cortisol now, back in October it was very high all day although January of last year it was only waking and bedtime ones that were high.

[PixieElv in reply to SeasideSusie]

Hello

Thank you for the link 😊 I’m allergic to dairy so it’s difficult to find an alternative however I’ll try pea milk see if that makes any difference

I’ve not tested my cortisol again. They seems to be change and non of the supplements seems to make a difference 😞

[SeasideSusie Remembering in reply to PixieElv]

NDT is still T4 with added T3 so it's still replacement thyroid hormone so may be susceptible to the same absorption issue. Also although the hormone comes from pigs' thyroids, I believe I read somewhere that Armour adds synthetic hormone if necessary to get the correct amount of hormone if the balance isn't correct when testing batches in the production process. Maybe other brands do too, who knows.

[PixieElv in reply to SeasideSusie]

Good points.

Do you have any advice? Other than the soya?

Thank you 😊

[SeasideSusie Remembering in reply to PixieElv]

I've never wanted to use soya in my diet (although I do admit to ignoring the fact that it's listed in the ingredient panel for chocolate!) so no advice as far as that's concerned.

Usually when on combo meds of any sort we tend to see FT4 lower and FT3 higher so your FT4 being at the top of the range isn't what we generally see. I take Levo plus T3 which gives me the freedom to tweak each individual hormone to the combination that suits me, maybe the ratio of T4 to T3 in your NDT isn't quite right for you.

[PixieElv in reply to SeasideSusie]

NDT was the answer for a year. Levo never worked for me. T3 on its in made me very jittery. Even on low doses

[SeasideSusie Remembering in reply to PixieElv]

Did you try a combination?

[PixieElv in reply to SeasideSusie]

I’m trying NDT and T3 now. But not tired Levo & T3 yet.

I guess that’s next if this doesn’t work 😔

[FancyPants54 in reply to PixieElv]

Can you have proper cow or goat milk? Of all the other options only soya works in tea or coffee and only oat milk tastes nice. The rest are dire in every way. For cereal I’d definitely use oat milk. For cream substitute I used coconut cream or milk. I gave up trying to find something palatable for hot drinks that wasn’t soya. Eventually, having proved dairy was not an issue I went back to it with joy.

[PixieElv in reply to FancyPants54]

Anything ‘animal milk’ makes me very ill, so I’ve not had dairy for 17 years 😊

I find Mighty Pea is ok. But they don’t do yoghurts. Only soya and coconut and they are very fattening.

[SlowDragon Administrator in reply to PixieElv]

Try oat milk

Plenish brand is guaranteed gluten free…..just oats and water

Are you splitting your NDT

”always hungry “

Perhaps you are a little over medicated

Personally I have found I need less T3 the longer I have been on it ….especially after going dairy free (was already gluten free)

Like SeasideSusie i find the flexibility of dose adjustment taking levothyroxine plus small doses of T3 is much easier to tweak

[PixieElv in reply to SlowDragon]

Levo didn’t work for me. I didn’t convert and felt no better.

T3 alone made me really jittery. NDT worked a year but now doesn’t anymore 😔

I do split my dose. Early morning and mid afternoon.

I will look out for gf oat! My local asda doesn’t do it but I’ll try another shop 😊

[SlowDragon Administrator in reply to PixieElv]

post from year ago on 175mcg Levo

healthunlocked.com/thyroidu...

FT4: 22 pmol/l (Range 9 - 22)

Ft4 100.00% through range

FT3: 4.2 pmol/l (Range 2.4 - 6)

Ft3 50.00% through range

So Ft4 a bit high and Ft3 a bit low

Did you ever try just adding small split dose T3 alongside reduced dose levothyroxine

Eg

150mcg levothyroxine and 3 x 5mcg T3

[PixieElv in reply to SlowDragon]

hi Slowdragon

No, i just tried T3, which didn’t agree with me. NDT was a wonder drug for me from about March/April onwards.

[greygoose]

Who said your labs were perfect? If you still have symptoms, then they obviously aren't perfect, are they. Optimal is not a number, it's how you feel. If you don't feel well, then your dose isn't optimal.

Thyroid 'meds' can't stop working. They're hormones not aspirin. But, for them to 'work', you have to take enough of them, so that brings us back full circle - i.e. your labs aren't perfect.

However, it could be the soy. When one says that soy interfers with absorption of thyroid hormones, we are talking about absorption at the cellular level, not in the gut. If it were just in the gut, leaving a long enough gap would be fine. But, at a cellular level, it doesn't matter how wide the gap is, once that soy is in your system, it's going stop thyroid hormone getting into the cells. And, when that happens, your labs may look 'perfect' - although I would dispute that - but it doesn't matter what's in the blood if it's not getting into the cells, where it's active - it doesn't do anything in the blood. So, if I were you, the first thing I would do is go soy-free and see if things improve.

[PixieElv in reply to greygoose]

Fair point about the ‘perfect’ 😊 I guess a lot of people would be happy/feel well on these results. And I’ve felt well on them before but that’s not lasted, hence my comment about ‘stopped’ working.

I’ll give the no soya another try as I’ve only recently started eating it again, so my decline actually started before that. But I’m pretty desperate so will try anything. 😔

[greygoose in reply to PixieElv]

If you felt well at that level, and then you didn't, you probably need an increase in dose. That's the way it works. You still have a little room to increase your FT3, although you don't want your FT4 any higher, so full marks to your endo for adding T3. Some people need their FT3 right at the top of the range, or even slightly over.

[PixieElv in reply to greygoose]

yeah, he’s a good’un! 😊

[HeartWoman]

Your estrogen dose is not very high. Have you considered increasing it to see if that helps? Could it be you are not absorbing the gel form very well? If you do, you will need to watch your thyroid levels closely.

I am trying to sort the thyroid and estrogen thing out, so I can empathize.

[PixieElv in reply to HeartWoman]

I started on the patches but didnt absorb them well. Then went onto the gel. I was on 4 pumps which made me SERIOUSLY ill. So I’ve gradually reduced the amount of oestrogen to see if any menopause symptoms would come back (night sweats, achiness etc) but so far nothing materialised.

Oestrogen and I don’t get on 😂

[HeartWoman in reply to PixieElv]

Isn't this fun? 😳

I had to try all kinds of combinations and not sure if what I am doing is working, but leaving it alone while working on my thyroid. I take 2mg of oral estrogen at night and use 1 pump in the mornings. When I tried the gel form only, I didn't absorb it well at all.

The patches make me crazy! It is like I absorb it all at once, so jittery the first day and then feel nothing the rest of the patch life. Plus I didn't like something attached to me. I was constantly checking it.

I hope you get it figured out soon. I increased my T4 to 100mcg last week, so I am not feeling that great either.

[PixieElv in reply to HeartWoman]

It’s crazy! How do we still function? 😂

Wishing you good luck with the 100mcg of Levo

[PixieElv in reply to HeartWoman]

Looks like I spoke too soon. I had a very menopausal night and will go up to 2 pumps today 😂 it never ends…

[HeartWoman in reply to PixieElv]

Hopefully 2 pumps will be the right dose.

[FancyPants54 in reply to HeartWoman]

Gel felt like an instant hit for me, made me jittery and then it wore off before the end of the day. Patches - same as you. I now use Bijuve capsule which is 1mg oestrogen plus Utrogestan at night and 2 sprays of Lenzetto. That combination works nicely.

[FancyPants54 in reply to HeartWoman]

it’s really hard doing both together. But keep going. My HRT is good and stable now. It took a long time and I had to try everything, but I got there.

[PixieElv in reply to FancyPants54]

oh that’s good to know. What and how much do you use?

[Hidden]

So sorry you’re struggling. If these were my bloods and treatment and I still felt unwell I would look at adrenals and rt3. Some on the forum don’t agree that rt3 is an issue, but I personally think it does play some kind of role in some people because it pushes D3 up which blocks T3 access to the cell nuclei, 3.5 grains is likely to make quite a bit of rt3. In your position I would reduce my NDT to 1.5 grains, add in direct T3 and test adrenals. If you have a negative reaction to T3 then it is likely an adrenal issue - my bio has some citations on this 🙂 good luck x

[PixieElv in reply to Hidden]

I don’t really know anything about Rt3. I’ll check out your profile!

my adrenals showing as ‘fine’ on all the NHS tests (like synacthen test) but 2 saliva tests (4 point) show my cortisol is sky high. I have not been able to get that under control. There is very little advice on high cortisol and what it does plenty for low cortisol

I’ve added 20mcg of T3 now too 4 grains of NDT. It’s only week 2 but i am sorting better but have huge energy crashes mid morning and afternoon. I think it’s the T3 wearing off

[Hidden in reply to PixieElv]

If cortisol is sky high then usually need to take something like PS100 for whichever times are high, can you show me your results? Might be able to suggest something 🙂 there is evidence that high cortisol blocks T3 from entering the cell at all, so it is a good idea to try and get it down.

[PixieElv in reply to Hidden]

that would be great, thank you. This was done Oct 22

somehow the graph ended up at the top of the post Sorry, no idea what I’ve done wrong

I’ve tried all sorts of supplements that are supposed to lower cortisol like Holy Basil, ashwagandha etc nothing made the blindest bit of difference