ndt what to do now: so was on 2.5 grains of... - Thyroid UK

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ndt what to do now

ramsfs10 profile image
16 Replies

so was on 2.5 grains of naturethroid for 8 weeks with both t3 and t4 at high end of range and feeling great. summer came and started feelin very hyper with my pulse in 90s and 100s.. i decreased to 2.25 grains and immediately felt better pulse back to 70s. after a week i started feeling hypo! all the brutal symptoms returning. so i then started alternating 1 day 2.25 and 1 day 2.5. felt ok but def a little hypo on the 2.25 day. so the i went back on 2.5 grains for about 10 days was feeling great but now pulse has been climbing the past two days and now i feel super hyper with pulse of 110! im at a loss of what to do now.. should i try 2 days 2.5 and 1 day 2.25? i already split the dose several times throughout the day

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silverfox7 profile image
silverfox7

Difficult to tell without a more informative time line but I found myself saying slow down a bit! So my apologies if my gut instinct was wrong but I would go back to 2.5/2.25 for a good 6 weeks and then retest bloods. That should even the dose out better in your body and stablise it then give you more accurate results on what is actually happening. I know advice isoften given to see how you feel but without knowing what you changed when then a more structured approach could be more beneficial and give a more in depth result.

ramsfs10 profile image
ramsfs10 in reply to silverfox7

im actually gonna try 2.37 if i can split the .25 which is gonna be hard! i will keep u posted

silverfox7 profile image
silverfox7 in reply to ramsfs10

You may well fell better if you can split it and lower the unevenness but be careful if you just get too many crumbs!

whyz68 profile image
whyz68

I don't know what size of a person you are but for smaller and/or sensitive people 1/4 grain can be a huge difference. Your dosage is probably somewhere in the middle of the the two dosages; happened to me all the time which caused my doctor to bounce me back and forth between 2 doses as well. I finally started cutting and piecing my medication so that I could get a somewhat consistent daily dose rather than alternating. Keep in mind, you are taking NDT which because of the t3 is more powerful than a straight t4 and more difficult to get "just the right dose". Also, just when you think you have founding the right dose you refill your prescription and you suddenly feel once again that you are either too high or too low. Pharmaceutical companies are allowed a 10% margin which is a lot. With the dosage that you are taking, it equates to about 1/2 grain margin. If that information isn't enough to make your head spin, there are a lot of other factors that come into play as well. Cell receptor sensitivity will dictate what dosage you need on any given day. That means your dosage is a moving target. Vitamin deficiencies, stress and hormonal fluctuations (if you're female) cause changes in how much thyroid hormone is allowed into the cell. This is where lab work can be inaccurate. It tests what is circulating in the blood, not what your cells are allowing in. There is no test for that. Furthermore, you are spreading your dosages out which is good when you take large doses of NDT once again because of the t3. The problem is that you have to be careful about what you eat and what supplements you take anywhere near your thyroid meds. I have read several books that state taking calcium, magnesium or iron supplements or foods with high amounts of those interferes with the absorption of the medication. The last book I read said keep them separated by 6 hours; anyway the range is 4-6 away from thyroid meds. Alright, I think I have bombarded you with more information than you could possibly want and there would be no way for me to regurgitate everything I have read over the last 14 years so I will leave you with all of that to digest and wish you good luck.

ramsfs10 profile image
ramsfs10 in reply to whyz68

wow that was great info! u are right it is a moving target! not to mention if u are in the sun and hotter that day too. im somewhere in the middle and will continue to play with it. hypo i feel like walking death and hyper i feel like im having heart attack. both suck lol

whyz68 profile image
whyz68 in reply to ramsfs10

Both suck but it's more dangerous to be hyper and you can actually have a heart attack. I think being overdosed for over a year is what caused my Chronic Fatigue Syndrome or at least a large part of it. So be careful CFS is a nightmare; literally.

ramsfs10 profile image
ramsfs10 in reply to whyz68

how were u hyper for a year? did u not have symptoms?

whyz68 profile image
whyz68 in reply to ramsfs10

I was over medicated with NDT. My PCP was only testing tsh which runs a little high even when Free t3 and Free t4 are in normal range but the tsh is considered to be the most accurate so most endo and PCP will only test tsh. The problem is if you have a pituitary issue (HPA axis dysfunction, CFS, Fibro) the tsh becomes inaccurate. This is not something the average doctor considers or even a lot of Naturopaths. I was taking 1.62 grains of NDT, drinking 5 cups of coffee a day (one with my NDT), taking multi mineral supplements with breakfast an hour after taking NDT; basically breaking all the rules that I was not aware of. I was too busy to take the time to have my lab work done after the last increase until about 9 months later and my tsh was .9. My doctor said I need to reduce the thyroid medication. The Naturopath said if I felt fine not to because the ideal range is between 1-2. I told him I didn't feel hyper but I was having a weird crash every afternoon for about 2 hours; thus my excess coffee consumption. He said to intuitively do what I think is best. I dropped my dose 1/4 grain and immediately starting having hyperthyroid symptoms. Doesn't make any sense does it? Had lab work done again including t3 and t4 and my tsh had dropped to .07, t3 was too high and t4 was high end of normal. I dropped another 1/4 grain and got even worse. I couldn't sleep and when I did nod off I would have horrific nightmares that eventually caused PTDS. I became so claustrophobic that I couldn't get in my own shower and so agoraphobic I had to have xanax to be driven to my doctor's appointments. I was paralyzed with anxiety at times where I couldn't do anything but hold on to the counter I was next to. Lab work showed a tsh of .01. I asked the Naturopath how this could be happening and he said "I don't know". I had to keep reducing my dosage until I got down to 3/4 grain which is less than half of what I was taking and put my tsh at 14 and my t3 and t4 just shy of low-normal. This is why I don't trust lab work completely because none of this story made sense until I did my own research and learned about thyroid receptors upregulation and downregulation, conversion issues, (vitamin, mineral, hormone deficiencies. If that 6 month horror story wasn't enough, while babysitting my sick granddaughter, I became ill as well and have never completely recovered. That is how I ended up with Chronic Fatigue Syndrome. Most people who are "here" are here because of issues that are not necessarily related strictly to dosage. For a lot of people the right dosage is not going to make you feel well because of other underlying health issues but we keep thinking we will feel well if we could just find the right dosage. That would be too easy.

whyz68 profile image
whyz68

I forgot. "getrealthyroid" is the website for the brand of NDT that I use. It's a great resource and has a conversion guide that I refer to regularly.

ramsfs10 profile image
ramsfs10 in reply to whyz68

i am going to try 2.37 grains if i can split the .25 in half lol

DebTex profile image
DebTex

Hi, I’m finding that it may be difficult to find the right dose of NDT too, I hope you can get where you need to be soon, I may be way out in left field but it seems like people on here are saying they are staying more stable on just T4, and that it’s a roller coaster on NDT, I might be really wrong in saying that, that’s what it seems to me anyway, I’m not going back on just T4 though it was terrible, anyway, keep on trying, hopefully you’ll get it figured out.

ramsfs10 profile image
ramsfs10 in reply to DebTex

yes i never tried t4 my functional doc put me on ndt right away. ive just heard so many awful things about t4 only.

SilverAvocado profile image
SilverAvocado

I think the obvious answer is to split a tablet. Alternating days with NDT is not as simple as with T4, as it also contains T3 which is faster acting. You may just be jerking your body around, alternating being over and under medicated.

Tablet cutters vary in quality, so it's worth trying again if the first one you buy isn't good. I've heard people using a razor blade or craft knife, but have never tried it myself.

For practicality reasons you may find you can't split that tablet, but could get hold of small value tablets of T4 or T3 and could use that as 'spare change' to top up your dose.

Its quite common to need a slightly higher dose in Winter than in Summer, and I think it's overall good news to be so sure that you're narrowing in on your perfect dose. Just be prepared when the weather starts getting cold again to increase back to where you were.

ramsfs10 profile image
ramsfs10 in reply to SilverAvocado

yes i was thinkin same thing about winter time. i think im also very sensitive to changes in my body which can be a good and bad thing.

jamesal0 profile image
jamesal0

HI Ram. I'm abit like you. If I stick on a given dose of NDT for more than a few days I will go hyper or hypo. I do a lot of varied exertions, IT work, watch utube, sail, 50-70km road cycling, dirtbike motorcycles, running, lap swimming and figure I just use more and less depending of the day/activity. I've given up worrying too much about it. I just try and take/anticipate whatever I need at the time. If I take too much the heart rate goes up or too little I get cold etc. So most days it's about 1.5 grains but it can go up and down by half a grain. At 3am I take half a grain and then and then again at 9 am. After that I take smaller quantities and use my symptoms as a guide. Dont worry about food and NDT. In fact taking with food is good because it damps the effects and (slow release) prolongs how long you keep absorbing it. Drink lots of water - NDT dehydrates you and then you feel like you have Hypo issues - when really you are just dehydrated. Buy B12 ampules at chemist and inject one every 3 months, you want to be somewhere between 800-1400 in the B12 blood test.

James

ramsfs10 profile image
ramsfs10 in reply to jamesal0

wow thank u so much

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