Am I still over medicated on NDT?: I need some... - Thyroid UK

Thyroid UK
101,678 members116,572 posts

Am I still over medicated on NDT?

I need some help (again).

My results above are when I was taking 2 and a quarter grains of NDT (Thiroyd from Thailand) and show that I'm over medicated.

I got some reassurance from you knowledgeable folk and dropped to 2 grains 23 days ago (just over 3 weeks) but I am feeling rather strange. Woolly headed, pressure behind my eyes, tiredness, racing heart when I climb the stairs, sudden grey hairs sprouting from nowhere, and worst of all an itchy ear canal that wakes me up at night.

Could it be that I'm still over medicated?

I feel so strange today that I've decided to drop to 1.5 grains.

Question is, is a drop to a grain and a half too much from 2 grains?

I was on a mix of 100mcg of levothyroxine 5 days pw and 75mcg 2 days pw a few months ago, and would love to hear from someone on a similar levo dose who can guide me on an equivalent dose of NDT!

I was hoping for great things from NDT but am getting so fed up that I'm considering going back to levothyroxine!

80 Replies
oldestnewest

For me those numbers are a result of being overmedicated. Can have similar symptoms being hyper as you would have being hypo. 2. to 1.5 is not a big jump. You could even skip a couple days or 3 of meds to see if you feel better as the meds start tapering. IMHO

2 likes
Reply

Thank you. Yes the doctors comments said that I was slightly over medicated and to reduce my dose. The reduction of half a grain isn't a big drop I guess, so I'll keep monitoring my pulse rate and morning temperature for a few weeks until I get another thyroid test.

Reply

Your Vit D is very low, do you supplement. Others on here will help you with that. Could you take a mixture of thyroxine and liothyronine rather than NDT alone. Just a small amount of T3 (5mcg) added to your T4 May have been better. Were you overmedicated on the 100mcg T4?

Reply

Being in the UK I've struggled to get NDT (buy it from Thailand) let alone a combination of T4 and T3, unfortunately 😞. I do have the recommended Vit D supplements but they're difficult to take so I've been aiming to get more daylight instead. I have never felt 100% on levothyroxine 100mcg, but my last TSH reading from GP was 'optimal' at 1.5, and funnily enough, when I changed to the Actavis brand of levothyroxine a few weeks before starting NDT, I actually started to feel a lot better! Could I be one of the minority who do better on T4 only with the right brand?

Reply

You'll need to wait until at least April to get vitamin D from sunlight. Can't be done here during winter because of the angle of the sun. Better to take vit D supplements.

1 like
Reply

How long before blood test was your last dose of NDT?

Your vitamin D and folate are both too low

So these need supplementing to improve.

Vitamin D, Aiming to improve to at least 80nmol and around 100nmol may be better . Vitamin D mouth spray by Better You is good as avoids poor gut function. Suggest you supplement for 2-3 months and retest. It's trial and error what dose each person needs.

Once you Improve level, very likely you will need on going maintenance dose to keep it there.

Retesting twice yearly via vitamindtest.org.uk

Local CCG guidelines

clinox.info/clinical-suppor...

Government recommends everyone supplement October to April

gov.uk/government/news/phe-...

Supplementing a good quality daily vitamin B complex, one with folate in not folic acid may be beneficial. B vitamins best taken in the morning after breakfast. Would also increase B12 which is borderline

If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 3-5 days before any blood tests, as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

Presumably you know you have autoimmune thyroid disease also called Hashimoto's diagnosed by high TPO antibodies

Are you on strictly gluten free diet? Or tried it?

Ideally ask GP for coeliac blood test first

amymyersmd.com/2017/02/3-im...

chriskresser.com/the-gluten...

thyroidpharmacist.com/artic...

scdlifestyle.com/2014/08/th...

drknews.com/changing-your-d...

1 like
Reply

NDT dose was about 14 hours before the test. The doctors comments didn't mention low folate only low Vit D? I have bought recommended supplements with B complex and Biotin, but I have to take 4 huge tablets a day which give me indigestion! I figured just getting out in the daylight for an hour a day would higher my levels? I wasn't aware that I had hashis until someone pointed it out on my last post. I've had a coeliac test a couple of years ago and it was negative. Gluten free is probably the way to go, I just find it so daunting! My father and Grandfather both died from bowel cancer and I know my father struggled with drinking beer which is full of gluten!

I think I need to cut the vit D into smaller pieces and get them down me! If anyone can recommend B12 supplements I would be grateful!

Reply

Just buy a vitamin D mouth spray

Better You make 2 strength options

1000iu or 3000iu

Widely available- most health shops

Suggest you start with 1000iu

2 likes
Reply

Thank you. My husband tried to look for the mouth spray in Holland and barrett but it was unavailable so they sugguested the tablet form. I'll look online for 1000iu. Thank you SlowDragon, you are always very helpful and I appreciate your time!

Reply

Igennus Super B complex or a Jarrow B right are popular B complex

Igennus is nice small pill, and doesn't turn pee bright yellow. Full dose is two per day, but many find just one is enough. I now only take half a one a day (after over 2 years supplementing)

Jarrow is large capsules. Personally I couldn't swallow these. Use to tip powder out in to hand and take that way

Improving low vitamin D can increase our need or B vitamins

drgominak.com/sleep/vitamin...

Better You spray might even find in large supermarket. 3000iu strength is fine to use, if can't get 1000iu

Many of us with Hashimoto's need relatively high dose to improve levels.

Read Seasidesusie many replies about vitamin levels

1 like
Reply
HiddenThis reply has been deleted

Hi reallyfedup (great name). 2.5 grains would make me more over medicated? so I'll stick at 1.5 grains and re-test in 6 weeks, then increase to 1.75 grains if needed. Over medication can cause heart issues and osteoporosis so I'm thinking slow and steady wins the race.

I think I'll have to bite the bullet with gluten free seeing as bowel cancer is rife on my paternal side, plus it's recommended for Hashi patients. Is sourdough bread gluten free? I can't stand the Genius stuff.

Reply

B free brand of bread is good gluten free one

No ordinary sour dough is not GF

It needs to be absolutely GF

Read all labels and perhaps join coeliac Uk - the online electronic directory is very good

2 likes
Reply

I'll get studying the online directory!

Reply

Don't forget to stop taking biotin a few days before blood test as it can make the test results inaccurate

3 likes
Reply

Hi. Could I ask how do you take your NDT. Do you take it in the morning all in one go. I switched from Levothyroxine to NDT for similar reasons this year after 12 years on NDT. I have autoimmune thyroid disease or Hashimotos.

I started my NDT taking it as I did with Levothyroxine in the morning before food with a hot cup of water. It was never explained to me by my old Endocrinologist how NDT should be managed. He just gave me them and said goodbye basically. I didnt feel well at all on it for months. But after recently having a light bulb moment. I thought to myself but NDT has T3 in it and often T3 should be taken throughout the day as it only has a short life span. So for the past weeks ive taken half at 8am and the other half at 1pm. I’ve seen a vast improvement. Before I was taking too much in the morning, which only lasted say 5 hours. Then my body would have hardly any T3 and then I would go very weak and sometime collapsed. Splitting the dose has really helped me.

I’m going to see my new private Endocrinologist next week and hope he agrees.

Thanks

Pam

1 like
Reply

Hi Pan. I've been splitting my dose in half and take at 11pm and 7am, but I'm considering taking it at 6am and 1pm to get that T3 hit during the day when I need it. Dr Lowe however stated that NDT could be taken in one go so that it can soak into the receptor cells. I guess it's each to their own?!

Reply

That's too long between 7am and 11pm

Ideally 12 hours apart if two doses per day

1 like
Reply

I agree that many need split dosing with any T3

I can ONLY tolerate my T3 in 3 doses per day (8 hours apart)

2 likes
Reply

Sorry, I see now that you are on T3 only Slowdragon. I will try my split doses in the morning and afternoon from tomorrow rather than a night dose. Do you have to leave a gap for food?

Reply
HiddenThis reply has been deleted

What about interaction with food if taking in the afternoon?

Reply

Ideally 2 hours after lunch and nothing for an hour after apart from water

1 like
Reply
HiddenThis reply has been deleted

Because NHS T3 prescription is on low side....I try to get as much out of each dose as possible....so I personally avoid food & drink for at least 45mins after, usually longer

Reply
HiddenThis reply has been deleted

Yes. Tried it for 6 weeks

I can't say it was noticeably better, possibly slightly worse

Swallowing with water, I still notice slight reaction/improvement about 20mins later

With dissolving under tongue, I didn't get that

1 like
Reply
HiddenThis reply has been deleted

Depends on the 'meds'. T3 molecules are too large to pass into the blood through the skin under the tongue. Plus, you need the stomach acid to free the T3 from the sodium molecule it's bound to.

1 like
Reply

At last the information I have sought for a long time. I could find nothing scientific about the matter of absorption using sublingual dosing with NDT. Is T2 and the calcitonin too big as well?

Reply

You're assuming that there is T2 and calcitonin in NDT, and that's by no means certain. Calcitonin, maybe, if it survives the process of being made into a pill. But, the amount of T2 would be so miniscule that it might just as well not be there. The thyroid only makes very tiny amounts of T2 because the bulk of it comes from conversion of T3 and rT3. But, if there should be any there, I imagine it would be too big, yes. No idea about calcitonin, I'm afraid.

1 like
Reply

Thanks that’s really informative. I wonder why the thyroid makes any T2 - for emergencies? Also if you are DOI2 reduced converter does this mean it might make more T2 as well as T3 - when it worked properly that is. I guess the extra T3 it makes in this circumstance would cover that on its own.

Reply

As far as anyone knows - and let's face it, no-one knows all that much - T2 is just part of the recycling of iodine. So, no, I doubt the thyroid makes more T2 under any circumstances.

You probably know that iodine is recycled in the body, which is why you don't need a lot of it. When T4 is converted to T3 or rT3, one atom of iodine is removed and recycled. Same when T3 and rT3 are converted to T2, then T2 to T1. That way, all the iodine is recuperated, and can be used to make more hormone. As far as anyone knows, T2 and T1 don't do anything much in the body. In which case, I find it surprising that the thyroid makes any at all. But, as I said, no-one really knows.

1 like
Reply

I though recent research had shown T2 plays an important role in metabolism and affects mitochondrial activity. It has been implicated in helping to control healthy body weight. It seems is not just a bi-product of the breaking down of thyroxine it does have a physiological role in its own right. I doubt I will find the paper (I read it all and it was really tough going very technical at a molecular or even atomic level, active transport chains type stuff) but I will try and post if I do.

I didn’t know the iodine was recycled I only got as far as it being broken down to T1 and what happened next was a mystery I had never actually given thought to. I presume it becomes T0 and then gets reused? I wonder if any animals with thyroids make a very different mix of thyroid hormones to us or pigs, say much more T2 and it is some sort of throwback of evolution.

Well greygoose i found this more readable paper with a helpful resume of T2 research and it’s possible significance. It will be one of those papers in the references I read originally. Looks like T2 can do quite a lot of interesting things in the body, but does it do quite a lot in the small amounts the thyroid makes? As you said.

ncbi.nlm.nih.gov/pmc/articl...

1 like
Reply

I suspect you are remembering this paper:

3,5-Diiodothyronine: A Novel Thyroid Hormone Metabolite and Potent Modulator of Energy Metabolism.

ncbi.nlm.nih.gov/pubmed/300...

2 likes
Reply

Oh yes that sounds like it is the one 👍🏽 I don’t think I’ll tackle reading it again tho 🤣😂🤪

1 like
Reply

If you're talking about the paper helvella mentions, then no, I hadn't read it. It's a very recent paper. I'll have a look at it later.

However, I must say that I very much doubt that anyone on thyroid hormone replacement is short of T2, because it comes from conversion of T3 and rT3. So, the tiny amount that is possibly found in NDT is not going to make much difference to the total in your system, and cannot therefore be touted as the reason people do better on NDT, than on T4+T3. :)

Reply

Given no one really knows i’m keeping an open mind about it, until irrefutable evidence demonstrates otherwise.

2 likes
Reply

I don't know that the thyroid "intentionally" produces any T2.

Given a soup containing precursors of thyroid hormones (T4 and T3), I would not be surprised at the odd molecule of T2 being created. But perhaps this represents just the unavoidable level of by-product rather than anything else?

(Of course, thyroid cells themselves will deiodinate the T3 they use but probably at the utterly ignorable level.)

1 like
Reply

Have you read this one? A good resume of T2 research. Quite interesting. It can do a lot of surprising things, but does it do them in us at the low levels produced? Just as you say 👍🏽

ncbi.nlm.nih.gov/pmc/articl...

1 like
Reply

Yes - one of many that I had read and half-forgotten!

The impact of T2 on T4 and T3 levels is, I feel, a very important observation.

1 like
Reply

That's funny, greygoose, because I am just about on my optimum dose (again, finally) as, after 26 years of Levo, I crashed. I now take 50mcg of Levo with 10mcg of T3 about midnight or 1:00 AM, then 10mcg of T3 at 5-6:00 AM. Both of these are taken with water but, my stomach is, obviously, totally empty. At noon I take a 5mcg T3 and again at app. 5-6:00 PM another 5mcg of T3; both of these are simply chewed up and swallowed, many times with nothing to drink. I feel as good as I ever have and judge a great deal on my Basel Metabolic Temperature. Today, this morning, it read 98. The guide is 97.8 to 98.2 so you can see why I feel so good about it.

Reply

Well, the water is just to make sure the tablet gets down into the stomach and doesn't get stuck somewhere in the gullet. It's not something that helps absorption, or anything. With your second and third doses you're not swallowing a whole, dry pill. Although I'm not sure that chewing it is quite the way to go, I'm not sure what's funny.

Reply

Good point. The only thing funny is that there is a tendency for us human beings to establish a sort of make-believe belief on certain "knowledgeable" individuals, such as yourself, to put our trust in your answer(s) and I see you are generally correct on most things thyroid and many people appreciate your sharing that knowledge with us; the "funny" part is that the way many people think of you, and several others here, is the same way we (used to) think (thought) of many physicians (way) back in the day. It's only too bad that there are so few doctors who actually appear to have common sense, as well as just credentials from some ivy league school. Peace be with you.

Reply

I don't really know what to make of that comment, so I'll just say, may peace be with you, too. :)

Reply

Thank you; I wrote it as a compliment; I have been told, over the years, that I have a very dry, some say sarcastic, sense of humor. Of course, this is not a good time to make jokes because the U.S. government is far funnier than we are, now, anyway. I do not take myself seriously; no, I leave that to idiots like Trump who despises himself even as he speaks of other human beings as if they were all "bums, & homeless people who refuse to work," and simply because they have little or no money; little realizing that, in reality, the hunger of only one should be the shame of all, especially the so-called "leader" of this insanity. Your thoughts can also be your prayers, even if you sometimes deny this, you will subconsciously understand that despite your outward appearance your soul is on its knees. Let us all who are on this forum communicating, speak together for peace, because this is what we are now communicating as true peace is but two people talking together with a heart between them. May peace find us all, it is not discriminatory.

Reply

Amen to that. :)

Reply

I take my first dose at 5am and the second at around 2.30 away from lunch and supper.

Reply

I also get my Thyroid S from Thailand and am just starting my 4th year. Before I changed over I was taking 100/125 Levo but before I made the swap I made sure all my vits etc were optimal. I now take 1.75 three days and 1.5 the next

My Endo who was there when I made the switch told me that results are read differently, TSH should be suppressed, FT4 can fall in its range but FT3 must be high in its range but never be over!

So yes you are over medicated. But I would just have dropped a quarter grain. Surprised though at your symptoms as I thought they would have settled my now. May be better to settle on the now lower dose and retest.

The only real difference between you and I is I dealt with my vitamins before I made the switch so may be keep the NDT at the latest lower level then get the vitamins sorted. It's not a quick fix and it can take some time for them to get optimal when you have fixed that get your NDT tested again after a 6 weeks to be stable as that may well have alternated the readings and will give you a much better baseline to increase your NDT if necessary

1 like
Reply

silverfox7

I don't take NDT.

But I understand, because it has T3 in it, you MUST take exactly same dose everyday.

Unlike Levo, where you can alternate dose

2 likes
Reply

Yes, I take the same dose every day and was advised not to take different doses each day like you can with levothyroxine. Do you take T3 only Slowdragon?

Reply

I always felt alternating doses on Levo were not good for me or less good than the same daily dose. I react very quickly to medication (it is even in my genes - super fast apparently) same with drink pie eyed after just a few sips! On the rare occasions I forget to take my NDT I feel little affected but I do take it later that day when I can and I never miss it twice on the run. I try to have a stash on me just in case. I’d never alternate doses on it. My heart would hate that.

Reply

Yes I m aware of that SlowDragon but I am also aware that my Endo is trying his hardest to stop me talking it! But I'm quite canny. I have to use a pill cutter to get my dose so whatever I do it's never going to be spot on! So when I spit I obviously have a whole grain so when I split to get the 1.75 or the 1.5 I select carefully when I'm needing the 0.5 I actually take the larger 'half', and the same when I'm approaching the lower dose and I can't tell the difference between the days. Plus it's documented that we do get a build up of T3 over 3 days so I don't feel any less medicated. To placate the man he did ask me to drop down to 1.5 every day but I knew that was never going to work as in effect that awoukd be a large drop for me but to humour him I did alternate days, that was a disaster but at least I proved it was. I then did 2 days 1.75 and one day lower and had that tested and it was a significant drop where as at 1.75 each day was on the top of the range. So I'm hoping that just dropping on one day will just knock me down somewhere between the two. He has already admitted I know what I'm doing and understand what I'm doing and can't fault me! But then on our first meeting he still asked me to stop taking it! I told him I was having cancer surgery at the end of the week so I wasn't prepared to change anything as that was my main priority so we have a bit of a cat and mouse relationship! So my last but one meeting he asked as I was going out of the door if I was still taking my vits etc so I said yes so my last meeting I decided we would talk about my vitamins etc as out of the blue my doctor asked if I wanted anything testing! After I recovered from the shock (!) I suggested the fab thyroid 4 and so took these reading with me and asked, as I'd never has a cholesterol one before (GP added that in) could he explain the results for me as I wasn't familiar with them. He was over the moon with them so +points to me! So everything is working very well or I wouldn't be following his advice but I appreciate your concern-thank you for that.

1 like
Reply

Thank you Silverfox. Just the reply I was hoping for. If you're on 1.75 from 100mcg to 125mcg of levothyroxine, then 1.5 should be a good guide for me on a slightly lower dose of 75mcg to 100mcg of levothyroxine.

I'm going to take my Vit D religiously today to get my levels up, and possibly supplement with B12 also. I'll include more iron rich foods into my diet too. Is it difficult for you to cut your Thyroid S tablets? My Thiroyd tablets are rather crumbly and difficult to get into halves.

Reply

I use a boots pill cutter and get pretty good halves and bite the halves to get 1/4 grains as it becomes more inaccurate with the pill cutter than nature’s very own personal set of cutting devices! Slight variations even out the next dose so don’t worry if the 1/4 are not completely spot on. The T4 has a long half life and is the majority in the 1/4 grain at 9.5mcg

it will only have 2.25mcg T3 in it.

Reply

I use a pill cutter carefully it works well.

Reply
HiddenThis reply has been deleted

I have an expensive one but it's still difficult to halve exactly.

Reply
HiddenThis reply has been deleted

Yes this is what I’ve stsrted to do the past two weeks and feel so so much better.

Reply

I also have difficulty splitting my NDT it just crumbles. My GP sent a request to my Endocrinologist in Aug 18 on how to successfully split. As this was new to me and my GP. The Endocrinologist took 3 months to get back after a few reminders. He prescribed the NDT privately to me. He said he had no answer. I’ve obviously sacked him now. My new private Endocrinologist told me about T3 and splitting the dose throughout the day. That was my light bulb moment. I just bite what I hope to be half and keep the remaining bit in a bit of tissue. At least I know I’m getting all of it throughout the course of the day. I think my new Endocrinologist May suggest I go T3 only when I see him next week. I’m not sure if this is an option you could consider.

Thank

Pam

1 like
Reply

What do you use to split your thyroid meds? I've never found a pill cutter that worked. I use a hobby knife/craft knife that looks like a scalpel and comes with several spare blades.

This isn't exactly what I've bought, but is similar. A single blade may last for as long as a year, and it comes with spares :

amazon.co.uk/Blue-Spot-Soft...

1 like
Reply

Hi. I just bite it and hope for the best! 👍

Reply

Lots of good advice here. Not sure how relevant my experience will be, but I went ‘over the top’ with T4 and cutting back did not calm my heart - I went from 100 to 75 then 3 weeks later to 50, but my heart was still doing the racy, thumpy thing at times (e.g. if I ran upstairs) 2 weeks after that (so 5 weeks into reduction!) I knew it still wasn’t behaving itself. It seemed like the over-medication had made it more sensitive to the medication. The only thing that worked for me was to come off the meds completely till it calmed then build up the dose again. This has been a total pest as I have had to build up very slowly since. But I wish as soon as the over medication feelings started I’d just come off completely for a few days. I might have got back to where I needed to be more quickly! We are all individual - this is just what happened to me. I’m just working my dose back up and getting close to the optimum - seem I only feel well on the cusp of being over - but I’m ready to pull back straight away this time if I have to! Good luck! 🤸🏿‍♀️

Reply

I totally get the thumping heart thing. Despite trying to be sensible and starting off slowly with NDT, nothing stops the thumping heart. I really think I'll go back to levothyroxine as I felt better on the new brand.

Reply

Palpitations could be a sign of low iron or low ferritin.

Another possibility is that the heart thumps a lot because blood volume is low in hypothyroid people, so the heart has to work harder to get blood to all parts of the body.

I've also discovered that eating lots of sugar and/or lots of carbs makes my heart speed up. Cutting back on sugar and carbs has helped. Unfortunately I keep on back-sliding and have to start low-carbing over and over again.

Reply

Did you take the test first thing and fasting, leaving off NDT for 8- 12 hours prior to the test? How did you feel, were you losing weight? You were over the top FT3 range but not by very much.

1 like
Reply

I took my last NDT dose around 14 hours before the blood test.

Reply

Oh so not very over FT3 if it were me I would stay on the original dose of 2.1/4 and not reduce at all, especially if you feel OK.

Reply

I find it strange that your FT3 is exactly the same on 2 grains, as it is on 2 1/4.

Reading through this post and your last post, it occurs to me that you're now feeling worse on 2 grains than you were on 2 1/4, is that correct? Maybe you didn't need to reduce at all. Some people need their FT3 over-range because they have some amount of hormone resistance at the cellular level. And it's not that much over-range - and you have to remember that ranges are man-made, and arbitary at best. We have to take our symptoms into account, as well. And, if reducing your NDT has made you feel worse, then reducing was perhaps the wrong thing to do.

2 likes
Reply

Gosh I never knew that greygoose I thought the free T3 had to be in range. I always go on how I feel which might be too much the other way to checking with blood tests but as I feel pretty well I doubt the blood test would reveal anything I don’t know already. I feel a darn sight better than when the professionals were dictating my medication.

1 like
Reply

Thanks Greygoose. I dropped by quarter of a grain because my TSH was extremely suppressed and my FT3 was over range, but not by much?

I feel light headed since I dropped to 2 grains a few weeks ago, and very tired. I've just dropped to 1.5 grains assuming that it's being over medicated making me feel that way.

I'm going gluten free from tomorrow and might go back on levothyroxine. The Actavis brand has been the best yet for me.

1 like
Reply

That’s a hell of a lot of sudden changes your body is not going to like it I am sure. My ticker is a bit dodgy and I am no spring chicken any more so I am super cautious about changes in doseage the heart being very T3 sensitive. I got some angina on the train coming home from work on Friday (not had any for absolutely ages) and though oh no this it it I’m a gonner, but it soon passed and had an uneventful I cycle home. It could have been caused by whacking in posts with a sledge hammer but it deffo felt like my heart throwing a wobbly not muscular strain. Feel dandy today.

Reply

It doesn't matter that your TSH is suppressed. It's suppressed (and that's not a very good way of describing it, really) because your pituitary senses that you no-longer need it. I'm not sure that being over-medicated does make you feel light-headed. I would have thought that more likely to be a hypo symptom. But, see how you do on 1.5 grains, now you're on it. But, do stay on that dose for at least six weeks before retesting, or changing your dose again. As TSH110 says, too much chopping and changing is not good for you. And you've now gone down by 3/4 grain in about two weeks. That's too much. You need to stay steady for a while to feel the full benefit - or otherwise - of these changes.

1 like
Reply

Hi greygoose, if you don't mind me asking are you still taking T3 alone or T4&T3 combo? Thanks for all your informative posts.

Reply

I'm back to T3 only, again. :)

2 likes
Reply

I used to take 120/125 Levo alternating to 3/4 a week. I was supposedly optimised (TSH 0.2-0.5) but always felt very unwell on it. If I took more I felt horrible jittery and irascible. Less and I was a cold brain fogged zombie. I was just slightly less so on the optimised regimen. I switched to NDT swapping 25mcg Levo with 1/4 grain NDT and did this very gradually to excellent result feeling very much better and like my old self. I split the dose am and pm. At 1.25 grains I felt normal again so stopped there. Perhaps you have overshot the mark as you were on a lower dose of Levo than me. But everyone is different and equivalence is a very inexact science. The blood results certainly show you have too much thyroxine swishing around. It could be a short bout of hyper I used to get those before I was diagnosed where bits of thyroid are picked off by your antibodies and dump their stores of thyroxine. My thyroid was dead by the time I actually got treatment giving out its swan song as one last mega blast of thyroxine that sent me completely bonkers.

I used the thyroid patient advocacy guidelines for NDT dosing, which you may find helpful, it covers getting to your optimal dose in depth. I will post the link at the end.

Oddly I was fine on 1.25 grains for two years (ThyroidS by the way so same as yours) and found later on one daily dose am worked just as well as splitting it yet early on I had to split the dose or I felt a bit wired. Then suddenly I needed to up my dose to an astonishing 2 grains I still have no idea why. I tried 2.25 but felt over baked on that. I have since added 4mcg of T3 to my 2 grains and feel better for it clearer head mostly. I would personally only drop by 1/4 grain at a time but I would only build up that way too so it would be obvious very quickly I had overshot the mark. I think you might have taken the medication too soon before your blood test I would always miss the daily dose right out and take it after the tests although some say leaving 12 hours is ok. Get the vitD up - I felt atrocious when mine became deficient.

Hope that is of some help.

I have the DIO2 mutation which most likely explains my poor progress on levothyroxine. Relatives of mine on Levo all find it very satisfactory. Trust me to be the black sheep of the family! I am also gluten free.

tpauk.com/main/article/trea...

Reply

Have you had your adrenal function checked? I am asking as I have been diagnosed with adrenal fatigue myself (I'm not in the UK). Every time I've tried to wean off the low-dose cortisone I was put on I felt I had to lower NDT because of hyper symptoms; yet, never felt quite right on less NDT. I am not saying you suffer from adrenal fatigue, nor that you should self-medicate, but I know it's pretty common in patients with hypoT (I have Hashimoto's) and that sufficient cortisol levels are required in order for your body to optimally absorb and use thyroid hormone.

I know it can be difficult to find a knowledgeable doctor, but just wanted to mention this as I know suboptimal cortisone levels can mess you up pretty badly and make it more difficult to optimise thyroid meds...in which case lowering your dose may not be ideal.

More info (I find it interesting that adrenal fatigue can be caused by chronic disease and Hashimoto's is a chronic disease putting our immune system under a lot of pressure):

holtorfmed.com/treating-adr...

amymyersmd.com/2017/03/adre...

rawlsmd.com/health-articles...

Reply

You may also like...