Help with NDT / T3 dosing please, and ferritin!

[Sophie01]

Hi there,

I'm 49, and was diagnosed with Hashimoto’s around 2014/15. I took thyroxine 50mcg for about a year, which didn’t help much, then increased to 75mcg thyroxine plus 10 - 20 mcg T3 per day (seems I don’t convert too well) I was actually feeling pretty ok on this dose, though not quite my old self, but had severe knee pains that I suspected were connected with thyroxine, so decided to give NDT a go.

On 75 thyroxine plus 10-20 mcg T3 (8/8/17) my bloods were -

TSH 2.60 (0.5-5.0)

FT4 15.0 (11.0-22.0)

FT3 3.6 (3.1-6.4)

The knee pains vanished within 2 days of stopping the thyroxine, but I’ve struggled with dosing the NDT. I started on 12 august 2017, and think I increased too rapidly -

1 week - i grain split dose NDT plus 10 mcg T3 (felt bad on just i grain NDT so added some T3)

3 weeks - 1.5 grain split dose NDT plus 5 mcg T3

2 weeks - 2 grain NDT plus 10mcg T3 (split dose)

4 days - 2.5 grain NDT plus 15mcg T3 (split dose)

At this point I RAN back to my doctor feeling utterly dreadful (exhausted & depressed but also irritable, breathless desperate, most days struggling to just get through the day & put meals on the table!)

given that I was ok on 75 thyroxine and 20 mcg T3, I clearly over-dosed.

25/9/17 my bloods were -

TSH 0.87 (0.5-5.0)

FT4 11.6 (11.0-22.0)

FT3 4.3 (3.1-6.4)

Reverse T3 201 (140-540)

TgAb 29 (<115)

TPO 5 (<35)

Doc said I’d taken WAY too much T4, so advised me to stop the NDT for 2 days, flush out of system, so then

2 days 20mcg T3 only

Doc advised that if I felt ok, I could continue on just T3, or if I felt inclined, could add back in some NDT….so then

3 days 1 grain NDT plus 20mcg T3 (I think this made me hyper, so dropped the T3)

2.5 weeks 1 grain NDT (split dose)

2 days 1.5 grain NDT (split dose)

I will post thyroid bloods drawn yesterday shortly.

So I am currently taking 1.5 grains NDT only, 1 grain AM, .5 in PM. I was feeling progressively more hypo on the 1 grain, so had bloods taken before tentatively adding in the extra .5, and so far so good. The awfulness of the past couple of months has me taking things very cautiously now! I’ve read up on this site, and on STTM, and while a bit more educated, still feel as though I’m stabbing in the dark - it seems to be such an individual thing, dependant on vitamin/mineral levels etc etc….

I’ve managed to reduce the Hashimoto’s antibodies hugely by swapping life long vegetarian diet to paleo based, gluten & dairy free diet. I’ve had most? of the relevant vitamin / mineral tests, and am supplementing accordingly (very low in Zinc, Ferritin, DHEA, struggling to increase due to very low stomach acid, supplementing with Betaine HC and pancreatic digestive enzymes)

I have heterozygous mutation for MTHFR C677T and for MTHFR A1298C, after taking appropriate sups for few months, my B12 went very high, and Homocysteine low, so have for several months stopped sups.

Current supps (for approx 12 months) include -

AM

2 thyroplex (including zinc, selenium, iodine etc)

DHEA 20mg cream

NAC powder 1000mg (N Acetyl Cysteine)

Intestamine powder (glutamine, pectin, curcumin, aloe etc)

Aloe Vera juice

MID MORNING

dessicated liver tabs

Vit D /K 5000mg

fish oil

PM

compounded ‘primer’ with Zinc Picolinate, Mag Citrate, P5P, B6, Asc Acid, Vit E

magnesium citrate 540mg

B6 (P5P) 34 mg

The main problems with bloods over past 12 - 18 months seem to be low Zinc, low Ferritin, low DHEA, low T-Protein, and difficulty raising these levels despite conscientious supplementation with high doses

My doc started me on betaine HCL for low stomach acid when it became apparent that I’m not absorbing nutrients / vitamins easily, so I take 2 -3 tabs with protein meals, this has helped digestion a lot - stools not so loose, not as much ‘bubbling’ in the gut for several hours after food.

Recently including Zinc Carnosine complex to try absorbing Zinc through stomach with meals (2 pd) and pancreatic extract for digestion.

Will be testing for SIBO this week.

DHEAS - 1.1 (1.0-11.7)

ZINC - 11.9 (9.0-19)

IODINE 128 (>100)

Blood analysis is mostly ok except for

T-PROTEIN - 59 (64-81)

GLOBULIN 25 (26-41)

IRON 23 (5-30)

TRF 1.9 (2.0-3.6)

TRF SAT 48 (10-45)

Ferritin 41 (30-300)

PHEW! I’m sorry for the overload of info! Basically I’m hoping for any advice regarding

!. my dosing of NDT (and T3?), and

2. how to raise my ferritin?

I know that for T4 conversion, and for T3 to reach the cells, Zinc and Ferritin need to be optimal, but I’m struggling to raise these levels…..my hair has fallen out quite substantially (feels much much thinner all over)…..But because my iron is not low, and saturation is high, it seems supplementing with iron won’t really help…..my protein absorption is not good, doc says we need to raise the protein levels and this will bring up ferritin (I think?)

Anyway folks, I feel very lucky to have this condition in the internet age, because forums like these are priceless…..having spent a small fortune on doctors, organic foods and supplements, it seems that the best advice of all often comes from those who have experienced similar issues, have been through the trial and error etc I’m also lucky to have a superb doctor who is both very knowledgeable and willing to work with me to find solutions…..

any advice or direction would be greatly appreciated!!

Cheers, and thanks in advance

Sophia x

[greygoose]

I don't think your problem was too much T4 - your FT4 was very low, so I don't know where he got that idea. I think the problem was that you were not only increasing too fast, but jumping around too much with what you were taking. You didn't give anything time to work.

Could also be that taking iodine is adding to your problems. Iodine supplementation is NOT recommended for hypos unless you have been tested and found to be low. Even then, it's not as simple as just taking a pill.

And aloa juice is going to mess with your absorption. Not recommended, either.

With all these supplements that you take through the day, plus food, how on earth do you find time to take your thyroid hormone correctly? On an empty stomach, at least one hour before food - or two hours after - two hours away from other supplements or medication; four hours away from vit D, iron, calcium and oestrogen; six hours away from magnesium.

Can't see any mention of B12/folate, by the way. That's also very important.

But, basically, according to the lab results you've given, you just under-medicated. I don't know, if it were me, I'd be tempted to drop everything and start again. It just sounds like a total mess.

[Sophie01 in reply to greygoose]

Hi Greygoose! Thanks so much for your tenacity reading thru my chaotic schedule, and sorry for too much info.. it's been a mess, especially the past 3 months....thousands on doc and sups, to be still feeling crap was disheartening to say the least....anyway, I'm now really taking the bull by the horns, stop relying on docs, doing all my own research Wentz and Amy Myers etc thank goodness for this forum! I'm gobsmacked to know I was UNDER medicated on the thyroxine / T3, but also glad in a way, means that maybe on the right stuff I'll feel better....doc has been very focused though on getting the ferritin zinc protein up, saying I won't be able to convert / utilise thyroid meds properly until I do....I've always taken thyroid meds half hour before one matcha tea, an hour or more before food, but on your advice, am now popping first lot in early hours when I get up for a pee (going great guns!).....

After the mess I made of increasing, I did drop everything and start again - basically now I have been 3 weeks on the 1 grain, but started feeling very hypo, so increased to 1.5 grains 3 days ago and feel a world of difference, even dreaming for first time in a few years. I will stay on this dose at least 1 month before increasing, I'm VERY wary now!!

Regarding sups, the thyroplex mix I've been taking has 290mcg iodine, docs said this was too little to be of importance when I questioned her??? I'll stop the Aloe Juice, last thing I need is further impediment to absorption!!

On the B12/folate, doc addressed this about a year ago (bc MTHFR mutations), she had me take appropriate sups for a few months, but when they sent my homocysteine very low, and B12 very high, she stopped this supp - I see her today, so will ask again.

can I ask Greygoose if you believe my Ferritin / Zinc / Protein levels are too low for the NDT to really work for me long term (until I manage to raise them?)

Ferritin 41 (30-300)

Zinc 11.9 (9-19)

T-Protein 59 (64-81)

My iron is normal, and saturation % is a little high, so iron supplementation is not key....I have researched and found little advice on raising Ferritin under these circumstances.....

Anyway Greygoose, sincere thanks again

cheers

Sophie

[greygoose in reply to Sophie01]

'I have been 3 weeks on the 1 grain, but started feeling very hypo, so increased to 1.5 grains 3 days ago and feel a world of difference, even dreaming for first time in a few years. I will stay on this dose at least 1 month before increasing,'

Be careful! Your next increase should be 1/4 grain, not 1/2, or you going to find yourself in trouble again. Make sure you do stay on it for at least one month.

'Regarding sups, the thyroplex mix I've been taking has 290mcg iodine, docs said this was too little to be of importance when I questioned her???'

Always remember, doctors know nothing about nutrients. It may be of no importance to her, but she's not hypo! And, that 290 mcg is on top of everything else - on top of the iodine you're getting from your food, and on top of the approximately 40 mcg you'll be getting from 1 1/2 grains of NDT. It all mounts up! Plus the fact that as your thyroid is making less hormone, your need for iodine is much less. Iodine isn't a magic fix for thyroids! Excess can cause all sorts of problems.

'On the B12/folate, doc addressed this about a year ago (bc MTHFR mutations), she had me take appropriate sups for a few months, but when they sent my homocysteine very low, and B12 very high, she stopped this supp '

I just do not get this all or nothing attitude they have to nutrients and hormones. They can't seem to understand the difference between them and drugs. Once you've got to a desired level, you don't just stop and forget it, you take a maintenance dose. Your levels have probably dropped again, by now. So, yes, do bring it up with her, and get her to test everything again.

'can I ask Greygoose if you believe my Ferritin / Zinc / Protein levels are too low for the NDT to really work for me long term (until I manage to raise them?)

Ferritin 41 (30-300)

Zinc 11.9 (9-19)

T-Protein 59 (64-81)'

Yes, they are too low. Your ferritin should be at least mid-range. Ferritin is like your iron savings account. The body puts iron and takes takes it out again, as needed. Your iron may be 'normal' - whatever that is - at the moment, but what it you use all that up, and there's nothing in the bank to replace it? However, iron isn't really my subject, so I'm calling on SeasideSusie to talk about that. And you do need good levels of zinc for all sorts of things, not just conversion. But, I don't know anything about T-Protein. But, it is under-range, so that's got to be too low.

[Sophie01 in reply to greygoose]

Don't worry Greygoose, once bitten twice shy as they say, I really don't want to experience that horror again! Doc also recommended staying on 1 grain 4 weeks then if needed increase by just the 1/4 grain....

About the IODINE conundrum, I hadn't factored in that NDT would contain some iodine, as well as reduced need with my thyroid making less hormone....so I will STOP that multi thyroid supp all together, and replace the selenium, zinc & aminos with separate / individual sups....I am aware of the dangers of iodine when it's not needed, having read Robb Wolff for example, and having watched a functional doc in Sydney actually seriously overdose my sister on iodine, but I had chosen to have faith that my very expensive doc knows best - I'm now seriously questioning this assumption!

Re the B12 / FOLATE,

I tested on 8/12/16, and

FOLATE - 23.5 (>6.0),

B12 - 382 (200-700),

P homocyst 6 (5-12)

doc put me on 'met-5-folate with TMG and MB12' supp, one or two once or twice a day (quite vague I thought!), or take when feeling fatigued and brain fogged.

I tested again on 29/6/17, and

FOLATE - >45.0 (>6.0)

B12- >1400 (200-700)

P homocyst - 3 (5-12)

At this point doc said simply to stop the sups, and has not revisited B12, folate or homocysteine since - bizarrely, as I had bought several packs of the sups when she initially told me this would be a long term sup. I know that with the MTHFR / hypo, B12 bloods can LOOK high even whilst the system cannot properly utilise the B12....in any case, I have been taking spirulina powder and desiccated liver tabs, both high in B12....I believe that doc is focusing atm on optimising/ fixing absorption issues, hoping some abnormalities will improve once I actually absorb nutrients? Similarly, she clarified yesterday that it is the T Protein that will help get the iron into the storage, to make the Ferritin go up (so treat the poor protein absorption rather than sups with iron) I'll be doing the test for SIBO shortly....

But I must admit that the whole B12 incident was baffling....I do wonder also if functional docs are the best qualified to help in this regard (supplements / nutrients levels etc), and feel it may be time to branch out - ****Greygoose, would you recommend a NUTRITIONIST, or a NATUROPATH???? Which professional would be best suited to guide me in this area, to work in a triangle with me and the doc???***

Oh, my recent thyroid bloods, after 3 weeks on the one grain NDT

TSH 3.51 0.5-5.0)

FT4 10.2 (9.0-19.0)

FT3 3.1 (2.6-6.0)

doc says optimal on NDT would see TSH at <2, T4 at 15, and T3 at 5....would you agree with this?

Anyway GG, thanks for your thoughtful replies, you've been super helpful, SO MUCH APPRECIATED!

[greygoose in reply to Sophie01]

Spirulina! There's another can of worms! Some say that its iodine content is too high for hypos to take, others say it doesn't contain iodine. So, I don't know. But, I've never taken it, just in case.

I have to say, I've never been impressed by what I've read about functional doctors on here. They never really seem to know what they're doing with thyroid et al. Same goes for Naturopaths. As for nutritionists... I have no faith in them whatsoever. I've seen a couple, and the things they've told me would make your hair stand on end. Both of them told me to avoid all fats if I wanted to lose weight! As if the fat I was eating somehow magicked itself onto my hips. lol

So, what is optimal on NDT? Well, I'd say optimal is when you feel well, no matter what your levels are! But, for most people that would be TSH suppressed, FT4 pretty low - even below range - and FT3 anywhere between 5 and 6.5, depending on what makes you feel well. I really think you would have trouble optimising your NDT with those levels she's given. They're just not logical.

[fibrolinda]

First results were under medicated, treated hypo should have TSH below 1 and more importantly your ft4 wasn't brilliant but Ft3 was very low.

Your second results your ft4 was LOW not high, what an earth was your doctor going on about? But often low when on NDT and or t3. Your ft3 had increased a little but still low.

You have to stop messing about with your dosage, slowly does it. It takes Six weeks for the t4 in the NDT to convert so you need to be six weeks on a dose before doing bloods or you are not going to get an accurate picture of how you are doing.

What ever you are on now stay on it for 6 weeks, not up or down just stay on it... then test again and you will have a much better idea of how much more you may need, if any. That's my humble opinion oh and always take NDT and t3 4hours away from any other meds or supplements etc and 1 hour away from food with a glass of water'

The rest made my head spin I'm afraid

[Sophie01 in reply to fibrolinda]

Sorry for the confusion fibrolinda (reflects me poor ol noggin' I guess!!) and thank you so much for taking the time to respond! MUCH APPRECIATED.....I'm shocked to hear that I was undermedicated at the first results, the doc was pretty happy at that point, even told me to reduce the T3 Liothyronine...bizarre....anyway I am very happy to hear that I was undermedicated, means that I should start feeling better once on the correct meds! I increased to 1.5 grains a few days back, and feel a world of difference.....I had only been 3 weeks at 1 grain, but I had read on Westin Childs not to stay TOO long on a dose if hypo symptoms are becoming severe (I was feeling rough) I'm taking your advice on board, and will stay on the 1.5 grains for the six weeks now, enough chopping and changing.....

I'm also being super cautious with dosing times etc.....while trying to get my Zinc, protein and Ferritin back up - I'm a wee bit concerned about pooling and reverse T3 because my Ferritin is low.....

Thanks again fibrolinda, you've been such a massive help!