Starting NDT after failed T4, T4+T3, and T3 only experiments

[Blue_Bee]

After being messed around by a TSH blood test wielding junior endocrinologist for 12 months I found a very experienced, up-to-date and respected endo who agreed to treat me based on my symptoms (hooray!!) as long as I committed to adhering to a series of T4 / T3 experiments. Which I did, over a period of 4 months. Ugh! In all that time I think I experienced a total of about 1/2 day feeling really well, energetic, alive and in my own body. It was bliss, but brief. The rest of the time has been various levels of low-grade brain fog, chronic body pain, grinding exhaustion and deep sadness and anger at my ongoing loss of good health. Grief really. But I have persisted, kept working at my relatively low-stress receptionist job for a fifth of my old salary (2 years ago I was a senior manager in a global business) and just kept reading and advocating for my own health. During that 4 months I unfortunately got the flu twice, despite the flu shot, and had to be shot full of iodine for a cat scan as they thought I had a horrible chronic lung condition, which I didn’t, thankfully. But the iodine apparently shuts down your thyroid and throws the tests out of whack for a while , so no point posting my current results here for now. Anyhoo, suffice it to say I feel completely rubbish, but have a glimmer of hope because now I’ve been prescribed NDT. As soon as the compounding chemist is ready, I’ll be on it! Anyone out there with a similar history who is now well on NDT...?

[marsaday]

Going through all the protocols and still not being better is common.

Issues which may be to blame are the vitamin and mineral deficiencies or cortisol imbalances. You don't have enough cortisol to take the T3 into the cell or have too much so blocking things up. I assume you know about these areas. Have you addressed any imbalances ?

Do you have hashimotoes ?

What do your bloods look like and what meds were you taking at the time ?

Did you ever have any positive experiences when you took some T4 initially or T3 ? These can gives clues as to what may work.

NTH may be a wonder fix, but very often it is more of the same.

Finally what doses of T4/T3 were you using ?

[Blue_Bee in reply to marsaday]

Hi Marsaday, thanks for your note. 1) The cortisol was tested early on, 18 months ago, with two 24 hour urine tests about 1 month apart because the first one was low, but still in normal range; 2nd one also in normal range and not as low. I’ve not had the saliva test. 2) For the last 3 months I’m on good quality (I think!) supplements daily: magnesium glycinate, 200 mcg selenium (very low in the soil here in Australia), 30mg zinc picolinate, 1,000 IU vitamin D, 600 mg calcium carbonate, 1,000 mg vitamin C as 50:50 calcium ascorbate and sodium ascorbate. I take all these last thing at night at least 2 hours after my last dose of T3 (currently until my NDT script is ready). 3) Yes I’m Hashimoto’s diagnosed 18 months ago. Looking back I’ve had bouts of hypo and hyper since childhood. Am also Coeliac diagnosed about 15 years ago and on a strict gluten free diet since then. I am very sensitive even to gluten cross-contamination. 4) my latest set of thyroid bloods taken early morning, no meds and fasting, are:

TSH <0.005 (0.40-4.00)

Free T4 <5.2 (9.0-19.0)

Free T3 4.7 (2.6-6.0)

Iron:

Iron 20.9 (5.0-30.0)

Transferrin 3.0 (2.0-3.2)

TIBC (Calc) 66 (46-70)

Saturation 32 (10-45)

Ferritin 45 (30-300)

5) Just about every (?) time my T4, or T3 was increased I felt so much better (not normal but about 6 or 7 out of 10, instead of 3-4/10) when I first started T3, about 5 months ago the thick brain fog disappeared within days (THAT was amazing) and has slowly returned but just as a slight mist still a vast improvement! Once I took 40mcg at once and felt LIKE MYSELF again, full of energy, clear-headed, NO BODY ACHES, for about 5 hours. All of these improvements then fade over the first few days. 6) For the last 10 weeks I am on T3 only, starting on 30mcg (10mcg x 3) daily and most recently 80mcg (20mcg x4) daily. My last dose is at about 8pm and I still sleep well, but wake somewhat tired (much better than 18 months ago though!) So, there you have it! What does this all mean...? When can I hope to feel better? I really hope NDT does bring permanent improvement, I’m at my wit’s end.

[marsaday in reply to Blue_Bee]

Ok, so it is good you have had some positive results. It just sounds like the same old story that you were good at first but slowly the effects have worn off. Trying NTH is a good idea, but i imagine you will get the same results.

You are taking lots of the important supplements so that probably covers this area. Ferritin could be higher, but the iron panel overall looks good.

The FT4 is low and is expected as on T3 only.

I would expect a higher Ft3 number, so you may have some absorption issues with your thyroid hormones (celiac might be the cause here).

Typical T3 replacement doses are 40-80mcg per day, but some people can use much higher doses (same as with T4).

Do you take your temperature and blood pressure and heart rate ? Are you getting normal temps in the day at 37C, or 36.6C on waking ? Is your BP normal ? A sign of too much thyroid hormone is a higher BP than you normally get. So these vitals are good tools to use to help work out if doses are to high or low.

Have you tried taking T3 in the early hours of the morning ? It is called the circadian T3 method and Paul Robinson has written a book about using T3 to get you well. Very often thyroid patients have lower levels of cortisol because the thyroid and adrenals work together. So when we sleep we make thyroid first and then we make cortisol in the second half of the night. So if we have low thyroid we often have low cortisol.

We then come along and pour in loads of thyroid hormones and very often they work initially, but then they stop working because the cortisol manufacturing is not able to keep upto speed with all the new thyroid hormones coming in. I think hash's patients have a tougher time with this area than basic under active patients.

So a simple artificial way to help this area is to take the thyroid meds at the time the maximum amount of T3 is being released into our bodies, which is in the second half of the night. 4am is a good time to wake up and take some T3 meds. Paul has seen his cortisol boosted by 300%.

So this is a simple thing to try and i would start with a low dose and see how it works out when you wake up. Because you use a lot of T3 your lowish dose will be much higher than mine. I would use 1/8th of a tablet, but you would be ok using 1/4 or 1/2.

You would wake up, have breakfast and see how you felt that morning. Is there any change ? Then keep up with your normal T3 routine.

I myself prefer to use mostly T4 (125) and only a tiny bit of T3 (3mcg). I have worked out this is the best ratio for my body. Dr Blanchard has written a great book on the thyroid and is worth reading.

I think the way to get better is to work on the thyroid/cortisol relationship. I think you need a higher basic level of T4 and then use the T3 to optimise yourself. You could select a T4 dose which is not to high, but not to low (say 75mcg) and use this as a base supply of hormone. Then fine tune with T3 to meet your cortisol output. If you can get these more balanced you will get better health.

I suppose you can try all this with NTH, but i find T4/T3 much better to work with as you have greater control over the ratios.

[Blue_Bee]

Thank you so much Marsaday for your thoughtful and detailed answer. Agggrrr! I really hope I’m not going to get “more of the same” on NDT, but a lot of what I’ve read here indicates that could be the case Then again, I expect the ones for whom it works are just living their fabulous lives, not blogging here. I’m an optimist That said... yes, I did try the 4am thing (and I have Paul’s book) but not for very little long, so I will give it a proper go this time. Temperature, blood pressure and pulse check also sounds worth a go. I was checking my temperature several times a day for the first 6 months or so and it was always low, below normal, even on the highest T4 dose of 150mcg. My blood pressure is good, in range at the lower end, when last checked. My GP said that temperature is so variable... still I would notice a trend at least. Pulse is a solid measure. The total self obsession with one’s body and constantly checking how you feel (usually rubbish and in pain) is a major aspect of Hashimoto’s that I especially resent. I spend a lot of my energy trying to forget how I feel. That obsession, and on top of guarding against gluten, ugh! No fun. Then I remind myself it’s not surprising that it takes so much effort to manually do what a healthy body does, miraculously and seemingly effortlessly. I read through some of your blogs and I can see you’ve put a lot of effort in over time, with some rewards of wellbeing. That is encouraging. As you found, I’ve also been feeling that I am missing the T4. Being on T3 only, with such a short half-life, means being on an endless 4-5 hourly roller coaster I find. Moments of feeling okay with a lot of physical discomfort in between — which is still way better than the 12 months of T4 only. At least I feel 4-5 out of 10, an improvement on 6 months ago. Thank you for all your thoughtful suggestions. I am determined to feel well again, somewhere consistently around 7-8 out of 10 would be pure joy. I will persevere, measure, track and analyse. It seems that’s the only way for some of us. Thank heavens for the support and experience shared here. It’s very lonely otherwise. I’ll look up that author too, tx.