What symptoms tell you how much to change daily dosing by?

Hi All,

So, I was chatting with a member and he mentioned how some people change their meds daily. As a type I diabetic, that practice reminded me of how those of us with diabetes, well at least Type I, up/lower hourly dosing based on feeling and hourly blood sugar levels. Consequently, I pose these questions, if I may:

1) similar to blood sugar meters, with thyroid there's no meter to do a daily blood draw, is there?

2) How does one know whether to hold off or to go ahead and up/lower meds on any given day?

3) Or is it metered by a conststent symptom over the course of several days?

4) to gauge whether to change t3 versus t4 meds, do different symptoms correspond more with t3 as opposed to t4 and vice versa?

5) in that regard, is NDT inferior to separate t3/separate t4 for most people, since you can't alter the t3/t4 separately with NDT?

Thank you for reading this. Any input is greatly appreciated...

❤️ TappedOut

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  • I am on NDT and take my basal temperature daily. I wouldn't change my meds if it wasn't right one day but would see where this was leading. Now I am happy with my dose I'm pretty stable. I had a new symptom the other day and wondered where it fitted in but it was only for one day then back to normal.

  • Thank you silverfox. So what temp do you seek? Do you measure by Ferenheit or Celsius? And has that method been successful for you regarding energy, weight, cognition, and other major symptoms? I think that your method is what I will likely be practicing. If I could ever find a doc here in Texas to prescribe separate t4 and t3! Or better yet, one that will at least test the "frees" and not tell me my symptoms are all in my head. But I digress...

  • Celsius. For NDT I do basal at 36.9 then around 3pm 37.1 though I often forget the afternoon one but I take my NDT, now my body is used to the T3 once a day-I kept forgetting the second dose so triedazsome do to take it all st once and it worked for me dinky make sure I do the afternoon does if I think something may not be right.

    Finding a good doctor is a problem many of us have!

  • I'm on NDT 90 mg 2 1/2 months, and took my morning temp which is 96.8. I texted and informed my dr. What would you have done?

    Also my red blood cells and 2 others are low, and ferritin is 16.

    My Dr. said I'm not anemic, but I pushed after it showed my ferritin

    was also low. I.m taking ferrous fumarate for ferritin low, should I be taking anything else for the low red blood cells 3.56 s/b 4.70 to 6.10. HGB is11.9 s/b 14. to19

    HCT 36.5 s/b 42.-52. my MCV is high at 103.0 s/b 80-94??

  • Hi Marin5, your question popped up in my email. I'm not sure that it was directed to me? I don't know how to answer your questions, I'm sorry. Maybe make it into a new post and then members with knowledge can answer.

    I initially asked about body temp and other symptoms as a guide and how others used those symptoms as such guides to dosing. All I can say based on what everyone has explained to me is that one temp isn't enough. You'd need to take your basal temp (that's as soon as you wake before going to the lavatory, before drinking or eating or doing anything really) for a series of days and then get an average to assess whether the basal body temp is too low. But again, I'm sorry. I don't know enough to answer your questions. I would definitely post it as a new post.

  • For temperature you really need to take it for a while to be sure where you are with it plus it's not easy if you are female with ovulating of menopause so you really have to get used to you. I've just woken up and its36.9 so good, that's mostly me but if I somehow get my quilt with a high tog I can end up with a higher on. I was just reading some notes from way back only yesterday, I don't take notes very often but this was after an Endo appointment from a name that I'd hoped was better informed so I recorded so to remember what was said and my temp was around the 35 mark so obviously too low.

    Over the last 10 days it's been 36.9 on 7 of them. The other three have been within 0.3, 0.2 and 0.1so that doesn't bother me. I've also found if I don't sleep well it drops a little and that accounted for one of those so getting used to what is your stable temp needs a bit of time. It's ones that are consistent higher or lower then you may consider tweaking your dose. Ferritin I've never had a problem with so not familiar with what to do

    Blood results-don't worry about the MCV. that is a ratio of two other readings so if they aren't text book then that is never going to be. The other low result are most likely because your ferritin is low but again it's not going to change things quickly just because to start to improve it. A red blood cell lives for around 120 days so approximately 4 months. But they don't regenerate all at once so as we speak some are dying off and new ones appearing so this is taking place all the time. Neither is starting to increase ferritin mean that the next one that enters your blood stream is going to be perfect so again patience is needed before you see any improvement. What I can tell you though rhatcin 4-5 months the blood in your body is completely different to what it is today so hopefully there will be an improvement.

    I can't understand though why doctors bother to take tests then don't look at them. Or don't seem to realise that if they aren't well into the range then alarm bells should be ringing that something is wrong or heading that way. What worries me even more is that they don't appear to be able to suggest anything or at least say I thing we should retest later to check on the 'dodgy' ones. There is an app Lab tests online which is useful for explaining what tests are for and a little about results. For low bloods then look to adding in some liver. Add it in something like Shepherds pie or cassorole as this helps to disguise the taste.

  • Thank you silverfox! I appreciate your knowledge. very helpful!

  • I absolutely adore you Silverfox7!! You're awesome and your thoughts and explanations are so helpful, on point, clear. I was just reading your reply to marin5....so insightful.

  • Thank you but a lot is learned by making mistakes! It's often easier to find what doesn't work than what does but it's all good experience and useful for elimination. But I found the hard way to take things slowly and ended up being over medicated which is horrible so I try to make a point now that slow is best and drop down before you increase if not sure.

  • Hi TappedOut - really interesting post.

    I've been type I for 26 years and it's only earlier this year that I was diagnosed with Hashimotos thyroiditis.

    I never, ever appreciated before how difficult it is to take the daily thyroid pill. People really don't understand that I find swallowing the pill harder than the 10+ daily injections. It does sound crazy but I know that I need each unit of insulin - I can add a bit extra if need be. Whereas I can only check thyroid hormones every three months.

    I know my insulin works in 15 minutes and thyroid drugs are cumulative but I really struggle not having that instant ability to test blood.

  • Hey Kes8, EXACTLY! In a sense, thyroid seems to operate under a similar theory of "basal"/bolus dosing, as we do with Type I. However, like you said the body response isn't as immediate as insulin, nor are the recovery methods.

    Further, It seems, in the thyroid world, they "bolus" with t3; "basal" by t4.

    I agree with you, and that was why I asked that question because, and you are probably feeling too, it seems the pills for thyroid some with their own complexities - similar to the old school, before insulin pumps, R and Nph. However, insulin is more cut and dry and any mistake can be quickly corrected.

    Well at least the daily consideration of bodily symptoms and function as a compass are not new to us. I feel for people who have never had to focus on such. It's complex and can be overwhelming to someone who was living and doing their thing then suddenly every breathe needing to be measured, so to speak. That's also why I tell myself when I don't think I can take anymore... it's nothing new, just a different response is required a different method of tracking.

    I wish you wealth and insight. If ever you need to, please don't hesitate to direct message me. And thank you so much for your reply.

  • Chopping and changing doses frequently may not lead a person to a 'place' where they feel good with no clinical symptoms. If someone has been on a dose for quite sometime and symptoms develop it's time to have a new blood test.

    We are dealing with hormones, not just ordinary medications and one dose of levothyroxine taken today will take about 4 to six weeks to leave your system.

  • Thank you Shaws, that's what I was trying to figure. You answered it beautifully - how and whether the daily dosing method is viable or even advisable, considering the cumulative effect of t4 and even t3.

    And further to that point, In your experience, do symptoms, once on a good dose, have a tendency to fluctuate daily? Do you wait for several symptoms (not just one or two) to indicate it's time to get labs drawn?

  • The 'good' dose is where all the symptoms are gone, therefore no fluctuation. The protocol is to keep increasing the dose slowly until you get to that point. Changing your dose daily would never get you to that point. Unfortunately, doctors don't understand the protocol, and think their job is done once the TSH is somewhere in range. Which is why so many thyroid patients never get well.

  • Ahhhh, I see. And that is something i contemplate as well, the very concern that you've answered: Why so many of our Thyroid sisters and brothers 🙂 feel unwell, despite NDT or combo t3/t4.

    I understand and that makes sense, that's why the protocol is to slowly titrate up. I see.

    I have been on 1/4 grain now for four days. How long, in your experience would you wait before titrating slightly up, assuming symptoms remain?

    I was going to do the 1/4grain until I get my next lab results, but I still feel unwell so I'm anticipating I'd need to go up at the very least, once or twice more. That, and I still am searching for a doctor (the Nature Throid I'm on now is from a refill from a scrip from my last doctor).

  • Leave it at least two weeks before increasing your NDT. Then another two weeks, etc. Hold on one grain for six weeks, for the T4 to catch up, then test. :)

  • Ahhhh. Thank you. I was sooo close this morning to using one of my spare Cytomel, 😝 because I'm still soooo tired. Then, I thought about it and your advise to chill and wait....so I am. Thank you! That is the closet to an actual plan than I've had from any doc. They just give the meds and leave you on your own. So thank you....

  • You're welcome. :)

  • I shall give you another link to Dr Lowe: of which this is an extract:

    Patients Likely to Fully Recover Rapidly

    Other patients who come to us for treatment have been doing everything right in terms of lifestyle. In their quest for relief, they’ve stuck to a high quality, wholesome diet supplemented by most every vitamin, mineral, and trace element. They’ve exercised despite fatigue and pain, and take practically no drugs. Some have

    done this for as long as twenty years.

    When these patients begin metabolic rehab, they add to their daily health regimen the proper form and dose of thyroid hormone.

    Almost always, they rapidly and fully recover their health. We love To meet these patients because we know they stand the best chance

    to quickly be completely well.

    web.archive.org/web/2010103...

    I would read the whole of Chapter 2.

  • Thank you....chapter 2, I'm so on it! This is excellent....

    📚 📝

  • I agree with greygoose - the aim is no clinical symptoms at all. If you are free of them and then they are coming back you need a new blood test and probably a slight increase in meds.

  • That makes sense. But then is there a point where one can't afford to go any higher? The highest I've ever read about a persons dosing was I believe, 300 Levo....

  • Dr Richard Bernstein has a YouTube channel. He is in his 80's, I think, and has specialised for decades in treating diabetics. In one of his videos he says that according to his own experience, diabetics often also have thyroid issues - and that their medics failed to diagnose/treat the thyroid issues.

    m.youtube.com/channel/UCuJ1...

  • Thank you for your reply...

    Yes he does. I love Dr Bernstein. I actually got to chat with him by phone years ago, when his first book came out. I called the number in the back of the book and HE answered!! He chatted with me. At the time, I had no thyroid concerns. So we chatted about Type I. Now though, he's so famous, there'd be no way to have that opportunity, but he was so nice. Last I checked, regarding his opinion on Thyroid, he was an early proponent of NDT for his patients.

  • Hi T.O.

    Dr Bernstein's thyroid video.

    You might want to also check out Dr Mark Starr's YouTube channel.

  • You're awesome! Thank you Londinium!

  • You're welcome T.O. 🖖🏻

  • T.O,

    Here's Dr Mark Starr's YouTube channel -

    m.youtube.com/channel/UCQBy...

  • I haven't gotten into him but I keep seeing his name so I will def check this out this evening (I'm on US/central time)

    I'm trying to get all the info I can then a do. That will write labs and scrips to my needs and I will be on my way. Everyone here is amazing and I appreciate and respect y'all (a little southern slang!!) 🙃

  • I jiggle about with my dose quite regularly, & initilally carried on taking my temperature & pulse regularly whilst I increased dosage & found what was right for me. I have been self-medicaing with THs for 2 years. initially NDT, then T3, then both last winter, & solely T3 again this summer. In summer I'm fine on 2.5 25mcg of T3. Winter 2 grains of WP Thyroid & 25mcg of T3.

    I need about 12.5mcg of T3 a day more in winter, & could be more if I didn't find NDT worked so effectively. I alter the T3 dosage as it's easier due to no waiting time for the T4 in my NDT to catch up with what I'm doing or how I'm feeling. This is good for me as I'm prone to infections, & need to drop my dose by a quarter or third if I have a bad cold, flu, or my sinusitis flares up. This happens much less frequently than before THs when my body temperature was always 1.5 degrees below normal, & I was constantly run down with at least a sore throat.

    I'm fairly inactive & can't do any aerobic exercise due to joint pain, but on days I'll be more active than usual, I like an extra quarter or half tablet of T3. An extra morning coffee helps, too, but always well away from taking THs!

    In a month, I plan to reintroduce NDT to stop skin problems flaring up when it gets colder. I have a better plan in place than last year when I messed up & made myself hypo again. :'(

    I use how I feel in the afternoon & early morning to judge my dose as up to 20 months ago, I crashed at 4pm, like clockwork, & had to sleep. This was very embarassing in meetings. I was always awake between 3-5am, & exhausted. If this starts to happen over a few days, I know I'm not taking enough, & increase by half a tablet, or if I'm really tired at 6pm, I'll increase by a quarter.

    Hope that makes sense?

  • Thank you for your reply. Yes It made sense. So you used to go off of temp, pulse, and overall feeling; nownyou go off of feeling. What temp would you look for and what pulse? Would you take an average over a course of days?

  • I've got used to how not being hypo feels, which was initially alien after >40 years being cold, or thinking I'd die during the occasional heatwaves we have! My morning body temperature before I took THs was rarely over 35.1 degree celcius, & crept up over 6 months, then leapt to 36.1-36.3 once I cut out unfermented soya. :D

    Now I only check my temperature if I'm feeling out of sorts, mainly if my usual dose for weeks/months feels too much as happened last week when my sinusitus had a flare up. I dropped to 50mcg of T3 for 4 days, as feeling a bit hyper is uncomfortable. I know from the past two years that if I don't increase in a month, I'll start feeling really fatigued late afternoon, & I don't want a T4 catch up gap when I start taking NDT again.

  • I'm glad that you have a system that works for you! I'm following, but it seems so complex. I just want to be that in tuned so that I can make good decisions like you are. I will take the next few weeks and try this temperature practice. You take it once a day when you do it? Or several times a day? And you then average them? What is a reasonable average temperature?

  • It must be so hard for you with diabetes to deal with as well!

    Have a read of this, re the Barnes basal body temperature test: regenerativenutrition.com/c...

    Basically just on waking in the mornng, before getting out of bed & doing anything that will raise your temperature. Out of curiousity, I took it later in the day too, but first thing is what counts.

    Normal temperature is 36.7 degree celcius.

    A liquid thermometer is advised though I used a digital as they're cheap & available in local pharmacies, so took a few readings in the morning for an average. I wrote it down for a week, but as it rarely varied, I didn't need to work out an average.

  • Thank you.....

    So first upon rising; log the reading into a journal; get a weekly average and go from there....I will def read some Barnes. I think that's where I first heard about this technique. I have also read that basal body temp was used for many illnesses and conditions in early medicine.

    But I also wonder what about outside temp throwing the body temp. i.e.,covers/bedding or air conditioning, throwing off the body temperature...I will look into this.

    If you're low in temp, do you take more 3 or more 4 or both? Is it at that point, coupled with other symptoms, you decide how to approach the dosing?

  • Even before rising as movement increases body temperature! :)

    If you're tucked up in bed, & at a comfortable sleeping temperature, it should give you a fairly standars baseline temperature, unless perhaps you're not covered up, or too well wrapped. There's a natural circadian dip in body temperature a about 4am, then it rises again before get up time. Sorry it's a wicki link, the graph's simple: en.wikipedia.org/wiki/Human...

    My temperature was consistently the same low between the end of March & July. I can't sleep if I'm cold, so adjust bedding accordingly. I am currently sleeping with a 4,5 tog summer quilt, with a light blanket which I'm guessing is normal for August. Until I took THs & became able to produce my own body heat, I'd still need the winter 13.5 tog quilt on top all year, plus I'd have to warm my bed with an electric blanket unless there was a heatwave.

  • PS that link is great!! I just looked at it....thank you! I was trying to find practitioners who've studied/practice the Broda Barnes technique. I think one can buy a list of such practitioners.....anyway, thank you for this. I will use it to follow my temps. This is a GREAT source.

  • I find it very strange that someone could charge for providing a list of names - and also very dubious. Who is doing the charging?

  • I'm not sure, but when I went to the site I believe there was a membership fee, and with it comes a list. It's on that broad Barnes site. I will try and find the link...

  • brodabarnes.org/membership.htm

    I believe it comes with membership; but I can't be certain. I read it on another site that the membership at the time of print was $18USD. It might have been eliminated. Not sure.

  • From what I could see the membership was limited to people with medical qualifications and to Resident, Intern, Student.

    There is no membership offered for patients. I suspect if you want someone who follows the Broda Barnes methods of treatment they'd probably give you a list of names in your area or your state if you asked. If they don't I'd be wondering how people are supposed to find the doctors.

  • I posted below to go to silverfox7 and it was sent to tapped out. How did that happen. Please send it to silverfox7?

  • I thought so....hehe!! No worries!! It's on the page, hopefully silverfox will see it. I will forward it to silverfox.

  • Just reading-read your post re NDT being inferior. I've looked at this whole thing differently. Yes I started again on NDT as I'd been on it before and it is made up to the same sort of mixed as our body needs. But before I started on it I spent 6 months correcting my conversion problem and I think because I did that then I am more stable. Ok you could argue that Levo would work better if that was the case but it was other issues with Levo that I wasn't getting on with probably down to the many intolerances I have but I didn't want to introduce any more chemicals either. It does concern me a little that many think that to solve conversion you add more T3 but you are never getting away from the variables of conversion issues. So I don't think that is the best way to do it. It may work short term but long term I'm not so confident.

  • I so admire you for doing that....it's a complex situation, any thyroid imbalance, then finding meds, a practitioner, labs, deciding whether to self treat, all of it - but then to mitigate conversion issues....I know that's not at all an easy undertaking. Admire you so much. I'm trying to work on that as well. I am certain that most of my conversion lapse is due to my anchor autoimmunity, Type 1 Diabetes, but whatever I can mitigate, I'm trying; reading, learning, trying....thank you for being an inspiration.

  • SIlverfox7,

    Can I ask how you corrected your conversion problem?

  • You're welcome!

  • Adding your diabetes into the mixed can't be easy either and I'm sorry I don't know much about it myself other than the diet aspect. I expect it's more complex thsn that and I would imagine differs between individuals. Are there any do's and don't that clash?

  • anna69 I was low in folate, B12 and Vit D, ferritin was ok so I supplemented. These four help conversion but the need to be optimal, not just in range. So best to get all four tested and then print results, ranges and any treatment doctor has suggested. So Doc usually happy if in range or even if near range!!!! Plus if they do prescribe it quietly often isn't enough. It does take time and part of that I expect depends on how low you are. Took me nearly a year to get a decent folate reading. As well as feeling better I feel I am stable now.

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