My latest blood results on NDT and T4, what's next?

Good morning,

I have Hashimoto's disease and have been on Armour, Nature Throid and now on Armour again (due to Nature reformulation) for the past over 6 years. I have been on synthetic t4 t3 for 1.5 years, but they didn't suit me at all.

My latest blood results on 2.5 grain of Armour and 12.5 t4 are:

TSH = 0.03

Ft4 = 14.7 (27%)

Ft3 = 5.7 (70%)

This was after 8 weeks on this dose.

Based on the results and some symptoms coming back( tiredness coming back, especially morning, dry skin, bloating, insomnia, puffiness etc), I have added 1/8 grain of Armour 10 days ago thinking I have some scope to increase. I am now overheating badly, feeling sort of a burning skin too. Initially I was feeling hot only in the morning and at night, now it's most of the day and even my mouth is on fire. I suspect this could be the t3 being high? My temperature is 36.8 in the morning, 37.1 at night, but I am also 5 days before my period. Also, when I wake up now I'm fine, then overheating after taking my thyroid medication.

Before I added Levo to Armour I was on varying doses of Armour, but never felt good with FT4 low in range (no energy in the morning, anxiousness, bad sleep, extremely dry skin, mouth, headaches, bad PMS) even though my FT3 was high in range (back in December 2020 my ft3 was over 80% with ft4 being 24%). I was also getting hot spells with these results and was extremely cold in the afternoon.

One thing I really dislike about adding t4 is that I tend to get more water retention (currently very stiff with water retention, especially hard calves, painful muscles, at least at the beginning of taking it. I am 15 kilos overweight,my consultant says this is mainly water retention, got Frumil retention tablets from him, but afraid to take them as they can mess with potassium and thyroid levels I have read.

Any advice is very welcome 😊 I am not sure if this hot feeling will settle as it's increasing more and more with some tiredness here and there and maybe I should add Levo to my decreased Armour to balance it out?

Thanks!

[SeasideSusie Remembering]

Swampyswamp

It may be that having a higher FT4 is better for you. Some of us on combination hormone replacement need FT4 and FT3 balanced, or FT4 higher in range that yours is. This is why NDT doesn't suit some people and they are better off with a combination of synthetic Levo and T3. I am on Levo plus T3 and I need both FT4 and FT3 around 60-70% through range, low FT4 means I am very unwell.

Are your nutrient levels optimal - vit D, B12, Folate and Ferritin?

[Hidden in reply to SeasideSusie]

Thank you SeasideSusie, it's true, I have tried so hard with NDT, always ending up either under or overmedicated, but with synthetics I was unfortunately worse (this is when I started to retain water and went from 67 to 80 kilos in weight), I can definitely add more Levo to a decreased dose of NDT. Do you see a lot of people doing it? My doctor said it's not that common, but was happy for me to try and he has seen positive results with me since December 2020.May I ask how you feel when your ft4 is low in range? Do you get hypo and maybe hyper symptoms despite of high ft4? Very confusing it is, isn't it?

My vit D is 119 in the range up to 125, I take 4000 units daily, active B12 is around 70% of range (I take Methylocobalamin 1000 a day, Solgar nuggets), folate was below midrange end of November 2020, since then I started to take Active Quatrefolic 400 a day, ferritin is always hovering around midrange, I take liquid iron for it.

Thank you!

[SeasideSusie Remembering in reply to Hidden]

Swampyswamp

May I ask how you feel when your ft4 is low in range? Do you get hypo and maybe hyper symptoms despite of high ft4? Very confusing it is, isn't it?

Do you mean despite high FT3?

My FT3 doesn't go high, 70% through range is the highest it tends to go and that's where I seem to need it so I tend not to adjust dose of T3 unless fine tweaking is necessary. I have adjusted dose of Levo and what natural conversion I do have means that as well as FT4 reducing it does reduce FT3 to a certain extent.

I don't get hyper symptoms.

When undermedicated I get hypo symptoms and tend to end up having an afternoon slump, needing to sleep but can't during the day so just close my eyes and often drift for half an hour or more. Also lose more hair than usual amount due shedding of dead hair.

[Hidden in reply to SeasideSusie]

Apologies, yes, I meant high ft3. My ft3 at 70% previously was after 24 hours of taking the dose too. I assume after increasing Armour now that ft3 will go higher again hence the hot feeling.

Also got a call I can get a Pfizer vaccine now, not sure I should wait not being optimal on thyroid medication, but would like to take this vaccination.

[SeasideSusie Remembering in reply to Hidden]

Swampyswamp

My ft3 at 70% previously was after 24 hours of taking the dose too.

That's too long a gap and is giving false low results. When taking NDT and T3 the last dose should be 8-12 hours before the test, adjusting time and splitting dose the day before if necessary.

As for the vaccine, I'm not optimally medicated at the moment and I am never well as I have other conditions, and I've had both my AZ doses.

[Hidden in reply to SeasideSusie]

SeasideSusie I see, I think I will need to make adjustments to my dose then SeasideSusie.

I am sorry to hear that 😔 I hope soon you will get back to your optimal levels, I hope this isn't to do with some medications shortages...

I will be going for a vaccine next Friday.

Thank you so much

[SeasideSusie Remembering in reply to Hidden]

Swampyswamp

No, nothing to do with medication shortages. I had an episode of tachycardia last November (I get sporadic tachycardia, not connected with my Hypo) and GP insisted I lowered my dose of Levo based on old results from a surprise test after I'd taken my daily dose of thyroid meds. I told him this, he refused to accept it, wouldn't discuss that I had previous episodes of tachycardia, just kept insisting on reducing my prescribed dose of Levo from 150 to 100mcg (they don't know that I take a lower dose of Levo plus self sourced T3 and that I regularly do private tests to monitor my levels). I refused 5 times to reduce my dose so he walked out of the room (very professional!).

I am bloody minded and have to prove a point, but rather than be bullied into it I refused a reduction but did experiment myself with a lower dose of my meds with the result that my FT4 plummeted to 22% through range and FT3 37% through range, and didn't I know it! Experiment over and I've increased doses now and am slowly working my way up to, hopefully, better levels. End of March I was 55% and 49% so still have a way to go to get them nearer 70%. Not sure if it's just taking a long time or whether I am now joining those members who aren't doing so well on Accord - time will tell as I'm due to do a new test next week.

I've proved my point and I wont be doing it again, this evidence will be used to refuse reductions in future, but the GPs are as bloody minded as me and only go by TSH which is always suppressed and has been for over 20 years. My only ally at the surgery - the Advanced Nurse Practioner who was fine with a suppressed TSH as long as FT4 and FT3 were in range and understood that I am on top of my thyroid, has now left so I'm basically up a gum tree.

Ho hum, life goes on and you make the best of it 😊

I hope all goes well with your jab, I had no reaction at all with either of them.

[Hidden in reply to SeasideSusie]

Oh dear that is awful, this has happened to me so many times before too. I am so sorry to hear that :(He walked out of the room like a child, I don't understand why it is so bloody hard for them to accept your decision and monitor. It's your body, not theirs.

In my experience it takes some time to get them up to where they were, it's just one second and they drop very low and takes a bit longer to get them up to where they were and of course, symptoms that come with it are unpleasant sometimes.

Thank you, fingers crossed

I am not sure I should make a change now from the increase before the jab, maybe not a good idea since it is 3 days away 🤔oh the timing is never right for anything 😆

[Hidden in reply to SeasideSusie]

Hi SeasideSusie I have received results after increasing Armour to 2.6 from 2.5, levo still same 12.5 mcg:Ft4 = 17.9 (12-22) 59%, went up from 27%

Ft3 = 5.8 (3.1 - 6.8) 72%, went up from 70%

I am maybe not that tired, but I my legs have become so stiff I can't really walk, my right leg is particularly bad, I am more puffy, retain more water and anxious. Any ideas as to why this is happening? I posted my new results in a separate post too. Thank you.

[SeasideSusie Remembering in reply to Hidden]

Swampyswamp

I have received results after increasing Armour to 2.6 from 2.5

How do you achieve an increase of 0.1 of a grain? I understand 1/4 of a grain but would have thought it near impossible to achieve an accurate dose lower than that.

One grain of Armour contains 38 mcg of T4 and 9 mcg of T3, so by raising your dose you've increased the T4 by about 4mcg and T3 by about 1mcg. I can't see how that will help.

The difference in your FT3 is so minimal I don't think you can be sure that's benefitted but I'm puzzled as to how much your FT4 has risen with such a small increase in T4 dose.

The usual dose change is 1/4 of a grain and if you can't find the right balance of T4 and T3 then some people add either synthetic T4 or T3 to tweak the doses until they're optimal for them.

[Hidden in reply to SeasideSusie]

I have 1/4 gr tablets from pharmacy, I split them in half (it is a challenge!).I have done an experiment and last time I have been checking bloods every 2 weeks within 8 weeks period (without changing dose of course). Seems my FT4 goes up and then down quite a bit, not sure why it fluctuates so much. These results were only checked after 3 weeks as I was feeling poorly.

I was going to add more T4, do you think it would be OK to add 6.25 to Armour now or previous dose (2.5 grains)? I don't know if adding T3 would help? You are right, such a small change wouldn't make me feel better.

[SeasideSusie Remembering in reply to Hidden]

Swampyswamp

We are all different as to where we need FT4 and FT3 levels when on combination hormone replacement. Personally I need them balanced at around 60-70% through range, others find a low in range FT4 with an upper range FT3 is fine for them. So it's a case of just experimenting and see what's best for you. With your results I wouldn't change T3 at the moment, I'd be looking to see what a higher FT4 does so I'd add some Levo and to avoid the fiddly cutting of 1/4 grain tablets I'd go back to 2.5 grains.

[Hidden in reply to SeasideSusie]

Ok great thank you, this sounds reasonable, will I add 6.25 or 12.5 do you think?

[SeasideSusie Remembering in reply to Hidden]

I'd go low and slow, especially as you had a big jump in FT4 from such a small increase in Armour, so I'd be adding 6.25mcg Levo at this stage, you can always add more if necessary later.

[Hidden in reply to SeasideSusie]

Thank you Seaside Susie, will go with 6.25 added to my 12.5 t4 and 2.5 Armour. Really appreciate your help.

[Hidden in reply to SeasideSusie]

Hi SeasideSusie you will be stunned at this, but I lowered Armour slightly by 1/8 yesterday and added 6.25 Levo, yesterday was ok, today headaches, palpitations and overheating, face lost puffiness. I will see how it is tomorrow, but I am very jittery, like, overdosed. Ft3 was 72% of range when made this change so maybe this is transient? Leg pain went away pronto as well. How could this be

[SeasideSusie Remembering in reply to Hidden]

I'd be very surprised if you have had any reaction within a day or two. T4 is a storage hormone and doesn't have an immediate effect and it usually takes 6 weeks for the full effect of a dose change.

[Hidden in reply to SeasideSusie]

Unfortunately I always do. I also have central hypo, which makes me very sensitive to any dose changes, I fluctuate wildly, hence 1/8 increases of Armour. Will see how I am tomorrow.

[Hidden in reply to SeasideSusie]

Hi SeasideSusie I hope you don't mind me messaging you on this, I have posted a new question, but haven't had any luck with responses. I have been suffering with bad palpitations, slight jitterness, couldn't sleep last night as my heart was beating fast and also when I try to walk, I get very dizzy. Do you think this could be transient 8 days after medication change (lowering Armour upping levo), how long should I wait for this to dissipate? Thank you.

[SeasideSusie Remembering in reply to Hidden]

Swampyswamp

As you say you are very sensitive to medication changes then it could be connected. I really don't know. But really you shouldn't make changes to both Armour and Levo at the same time. We always say to make only one change, give it time for levels to stabilise on the new dose then make the next change. That way if you've got a problem you can pinpoint it to what change you made.

Of course, it might not be your thyroid meds at all, I really can't say.

[Hidden in reply to SeasideSusie]

Thank you SeasideSusie . It is definitely my meds as I have experienced this before on increasing Levo, this is why I have changed to NDT as it seems more gentle, but that gives me low ft4. I was more wondering if anybody has any experience as to how long these palpitations should last if they are fluctuations, I assume 6 weeks of palpitations is excessive and won't be able to get through it with work and no sleep I'd you know what I mean.

[Hidden]

I can recommend the book "Tired Thyroid" by thyroid patient Barbara S. Lougheed. She used to take NDT and T3 and felt very unwell. She then switched to levo and a tiny dose of NDT (less than 1 grain) and got her health back. She describes the health benefits she gets from that combo...pretty amazing reading. She found it easier to maintain a normal body temperature and a healthy weight on mostly T4 and a little T3 than the other way around. You may be one of those people who would benefit from a low dose of T3 and mainly levothyroxine.

[Hidden in reply to Hidden]

Hi PurpleCat71, got the book couple of years ago and I think she is right in what she says. I definitely don't do well on synthetics on their own, done it for 1.5 years, it was bad. Buy, NDT works well in a way with T4, so I might lower my Armour slightly and increase T4. Thank you

[Hidden in reply to Hidden]

Yes, if you have good conversion, you probably don´t need a lot of T3. I hope you find the right balance for you!

[Hidden in reply to Hidden]

Thank you, my conversion is not great, generally ft4 upper range ft3 about 30-40% of range.