hello, 7 months ago i stopped taking euthyrox, 100 mcg and switched over to Thyroid-S. have been having a lot of difficulties that I'm thinking of switching back. Any inputs and advise are appreciated as I am doing this alone with no GP.
I started with 1/2 grain and then 1 grain and over 7 months with lots of difficulties moved to 2 grain recently (1x2), however I'm feeling hyper and hungry all the time and have lost weight and can't sleep and my results of t3 and t4 are low and tsh is fine which is weird. My yesterday results where:
TSH 1.29
T3 1.2 LOW (1.3-3.1)
T4 59.7 LOW (66.0-181)
FT3 3.84 (3.1-6.8)
FT4 10.00 LOW (12-22)
TPO ALT 549 HIGH (<34)
TG ALT 247 HIGH (<115)
I would appreciate any inputs.
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MiaMam
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Hi, i took up from 1grain to 2grains over a month I've been doing 1/2 dose increments, not 1/4 just cause its difficult to cut the tablet. they only make 1 grain. so on feb 3rd I was at 1 grain, and then tested after a month, on march 4th and my tsh after testing was 16.2 and all other parameters (t4, ft4, t3, ft3 where all low), on march 5th i took it up to ndt 1.5 (i was then hungry all the time) , march 17th I went up to 2 which I believe was too fast and gave me lots of issues and then on march 23rd i took it down to 1.0 again and have been messing with 1 -2 since then (trying splitting doses, etc). April 1st I tried splitting 1.5 into 3 doses, then 2 into 2 doses and on april 7th i had the above test, where i took 2 grains the previous day split into 2 doses and my tsh was good whereby everything else was low which really surprised me.
on november last year (22), my
vit D was 42.6 (sufficiency 30-100)
vit B12 511.5 (211-911)
ferritin - 46 (13-150)
folate - i don't have
Im plant based for the last 3 months and before that have been gluten and dairy free for years. I've done a liver detox etc and am working on my health but am unable to figure out the ndt. its making me wired, cold , no nails, can't sleep, etc etc.
honestly my iron was low even when i was on atkins, paleo, etc, I've tried everything and i just have less stomach issues on plant based. don't have the enzymes to digest animal food. what would be the way to increase ferritin? I've tried beef liver in past , etc but nothing...
I have low ferritin as well. I take iron supplements that don't mess with your stomach. I have been on NDT - for 14 years. I adapted quickly without problems. Maybe you have gut issues? Just as not all of us can take the lab versions of T4 not everyone can do well on NDT. Good luck.
MiaMam, I don't claim to have any special knowledge of NDT, but personal experience suggests to me that you have probably overshot your 'sweet spot'. I'd suggest dropping back to 1.5grains, and maybe consider adding in 25mcg levothyroxine. The ratio of T4/T3 in desiccated thyroid doesn't suite everyone, and quite a few people find adding a little T4 into the mix works better for them.
'Im plant based for the last 3 months'
Perhaps it would be better to go back to your previous carnivorous diet for a while. Expecting your body to cope with hormone imbalances at the same time as changing to quite a restrictive diet may not be ideal.
I have sent you a post to reread my first reply to your first post in this forum.
As you have Hashimoto's it is very important to first try and heal the gut as absorption is likely an issue. and this auto immune disease can present with erratic swings in thyroid hormones and cause significant symptoms that you might presume to be over medication.
Also as mentioned previous there is a school of thought that doesn't recommend NDT for people diagnosed Hashimoto's as this disease actively destroys the thyroid gland and you are introducing a medication derived from animal thyroid glands.
No thyroid hormone works well until your core strength vitamins and minerals, those of ferritin, folate, B12 and vitamin D are up and maintained at optimal levels.
When I started my research on low ferritin - I read ferritin had to be at least over 70 for any thyroid hormone to work well -
I now aim to maintain my ferritin at around 100 :
folate at around 20 : active B12 75++ ( serum B12 500 ++ ) and vitamin D at around 100 :
I often see people here recommending to take selnium. I think it's important that you test first and not blindly take it because you read it somewhere. Too much selenium can cause many problems, some which mimic problems with your thyroid - cold, brittle nails, hair loss.
Looking back I see you have Hashimoto's Auto Immune disease and recommend reading around " healing the gut " from the research of Dr Izabella Wentz who writes as :- thyroidpharmacist.com :
I'm not aware i have this issue but do know I have low stomach acid so just take a teaspoon of Apple Cider Vinegar with live culture - in a glass of warm water around half an hour before I eat my main protein meal of the day.
Thank you for the note on where to find my posts! I have had a great weekend rereading some very valuable replies that I can implement and help me in my direction. To maintain ferritin at 100, do you supplement ? Mine is 29.9 which could be causing me issues but I want to retest my iron before staring supplementation as I’m concerned on doing that one on my own and it’s possible side effects.
In the UK I believe a result of under 30 for ferritin requires further investigation - an iron panel and or an endoscopy / colonscopy.
I was over 65 and had to go through the second option - found all clear and then prescribed iron supplements - ferrous fumerate 3 x 322 mcg daily but they seriously upset my stomach and no option was offered.
Look for iron supplements marketed as an ' iron bysglicinate ' as these are meant to be kinder on the stomach - they were for me - I purchased the Gentle Iron brand made by Solgar but other brands are available.
I also ate liver twice a week and used Sparone liquid iron sachets as an extra -though the iron content minimal but desperate to build up this mineral.
Once I'd built my ferritin up to over 45 I could feel myself improving - but it took around a year to get up to around 100 and now I keep topped up by making a weekly chicken liver pate and take a sponful a day throughout the week.
thank you. one things that confuses me is the fact that my ferritin had gone down in 8 months from 46 to 30 ng/ml could be due to the vegan diet, although the woman who prescribed it to me said it should not as I had a lot of non-heme iron like beetroot juice, goji berries, leafy greens etc and then my iron went down from 110 to 50 and then to 93.8. The 50 iron was when I was on a low dose of ndt and hypo and I remember reading the Broda Barnes book that some people had their iron correct when on a good ndt. I plan on taking another iron test in the next few days to see the correct status. But as I understand 100-110 iron is ok and that one usually doesnt treat on the ferritin report? Thats what I read in the" stop the thyroid madness" book as I am no expert. Any thoughts on this please? I dont want to jump into supplementing if dont need to but if I need it I will obviously. I can go to a Dr but I already know the reply so Im reluctant on that route.
As I understand things Heme iron would be from organ meats and more easily digested and built up in the body - as whereas Non heme iron is much more slowly absorbed and you would need to be eating vastunrealistic quantities to make a dent in a low ferritin reading.
When hypothyroid we have a slowed metabolism and we struggle to extract key nutrients through our food as we generally also have low stomch acid . which in turn compounds digestion and absorption of the core strength vitamins and mineral naturally and why we need to suppliement the ferritin, folate, B12 an vitamin D .
T4 - Leveothyroxine is basically a storage hormone and needs to be converted in the gut/liver into T3 the active hormone that runs your metabolism -
and once your T3 is at an optimal level for you your metabolism should be restored, your health and well being improved, and you may find your weight fall away naturally without the need to diet.
With Hashimoto's this AI disease progressively disables and damages the thyroid gland and if thyroid homone replacement is not at a level that restores your metabolism and your T3 is too low for you you will experience symptoms of hypothyroidism :
A fully functioning working thyroid would be supporting you on daily basis with trace elements of T1.T2 and calcitonin + a measure of T at around 10 mcg + a measure of T4 at around 100 mcg. with T3 said to be around 4 times more powrful than T4 -
Since your gland is with reduced function you need thyroid hormone support :
Some people can get by on T4 monotherapy :
Some people find that T4 seems to stop working at some point in time and find by adding in a little T3 - making a T3 / T4 combo they can restore their health and well being.
Some people can't tolerate T4 and need to take T3 only - Liothyronine.
Whilst others find their health restored better taking NDT which contains all the same known hormones as that of the human gland and derived from pig thyroids, dried and ground down into tablets referred to as grains.
NDT was the original successful treatment for hypothyroidism for over 100 years prior to Big Pharma launcing it's own synthetic T3 and T4 options on the back of NDT and then gaining market share by fair means or foul.
Thank you. I wrote a separate post on my vitamins and minerals if you have the time to please give me any insights. Also would I then be correct in assuming that we dont supplement iron when iron levels are ok even though ferritin is low and rather treat it with food, i.e. heme iron or would it be a wiser strategy to add in iron supplements to bring up the ferritin while working on raising the ndt to get enough t3, or are we all different and we try different things and see if we get it right
We are all different but you need a ferritin over 70 or any thyroid hormone replacement to work well .
So first job, as I see it, is to build up your core strength tvitamins and minerals - as without a strong core strength you may struggle to build up the NDT to optimal
I'm nor too good on vitamins recommendations - I take a look but may not get back to you if someone has beaten me to it :
I feel utterly terrible on ndt, my nails are splitting, dr hair, dry skin, packing on the weight, can never get good levels, going to the Dr this week to try and get on something else, everything I fill the script its totally different, terrible joint pain as well. Im over it
On NDT, the usual profile is for FT3 to be near the top of the range and TSH often gets suppressed because of the introduction of T3. For instance, I take two grains of Armour a day and my FT3 is 6 and my TSH is 0.01. Your results suggest an absorption problem (due to vitamins and minerals not being tip top - ferritin and vit D look like culprits to me), an adherence problem (are you taking them on an empty stomach and then leaving it an hour before eating or drinking anything apart from water?) or an issue with a dodgy batch of the Thai NDT.
Hi there. I’m re reading my posts from before and your reply. I was taking the ndt split into 2 doses but with food actually. I’ve now restarted but with 2 doses , one morning on an empty stomach and one an hour after lunch. Restarted on 1 grain. I’m wondering if once a day, ie morning is fine ?
I am so sorry to hear what's been going going on for you. I've been on a ndt for 15yrs. I've not taken thyroidS but I do think you should check to see if there are any batch issues. I had this with another brand of ndt and my blood test results were all over the place which puzzled me as am usually very stable. When I switched to a different brand everything settled down. Despite your efforts your antibodies are high so this maybe causing issues with a sudden flood of thyroid hormones being released into the system.... This might account for some of the feelings of being over medicated at times They are hard to deal with. When it happens some people find temporarily stopping or lowering meds helps & then resuming usual dose after the flare up has died down. It's not easy.So if there's nothing wrong with the batch you are taking apart from the flare ups you need to be consistent with the dose. Increase if needed only every 6-8 weeks testing first to see if there's a need. This way you will hopefully find your optimum dose.....and not go to high missing your sweet spot But I acknowledge not easy when your thyroid is being attacked so hard!!
So maybe go back to 1 1/2grains.
Optimising your vits minerals will also help with uptake but they won't counter balance flare ups.
Eventually your thyroid will give up & you will be reliant on thyroid meds but flare ups will stop.
hi- I am also on Euthyrox 100 and was recently discussing with my endo about a switch to ndt-she didn't have any info because they haven't subscribed it for years in Greece... I was interested to read about your experiences..I was worried about long term use of t4 but am also worried about changing because I feel Ok - I think! Unless I am used to feeling like this!!
Hi, All great info everyone has given. I, too, had the same side effects you mentioned aboe -being hungry all the time, couldnt sleep, etc. which came about when I switched from T4/T3 combo to NP thyroid. Aside from making sure everything else was optimal, I think I titrated up to the next dose too fast. I dropped back & then added the higher dose in by half. Having digestive issues as well, I went the HCI route & used digestive enzymes. they both helped a bit. Two weeks ago I decided to try the aloe vera route that I had used years back. So far, it has been a panacea for the gut issue(s). The only land animal protein I eat is chicken about 1x/wk and I do eat seafood. I don't like that NDT is from pigs, but the synthetics didn't work for me.
Hi, no, I am doing the aloe vera juice (inner fillet). I do mix it w/an aloe vera flavored drink as aloe vera juice, alone - not so tasty I drink 4z/day Usually split it between lunch & after dinner. When it won't be convenient for the juices, I will get some gelcaps. I have never used them before so it will be new territory for me
and thank you as the caps will be something for me to consider. As I said, I am using the inner fillet, but when I purchase my next bottle, I will try out the whole leaf version. By the way, did you happen upon any info that indicates the aloe vera could interfere w/absorption of thyroid meds? I did not, only that people taking blood thinners, diabetics should avoid or use cautiously. I haven't read where the aloe vera coats the stomach like milk thistle, only that it soothes.
Hello. I am rereading my posts and replies and notice that you eat chicken only once a week and seafood. do you supplement the vitamins like iron and b and d then to keep them optimum?
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