So, finally got my blood work results back and I think? I may be overmedicated now. These are my results:
TSH: 0.03 Range: 0.35-4.94
FT4: 16.9 Range: 9-19
FT3: 7.6 Range: 2.6-5.7
Please advise - I'm currently on NDT 1 3/4 grains. I was on 2 a few back, dropped to 1 1/2, still felt crap, so raised it by a 1/4 to 1 3/4 yesterday. Should I drop my dose back down to 1 for now, do you think?
BTW, Vitamin D, folate, and B12 are all high end of the range and my ferritin has climbed from 42 in May to 72, although I've still a ways to go before that's optimal. Minerals are also all good, too.
I've also found my am cortisol has gone up a bit and is just under the normal ranger, so that seems to be sorting itself out (all the other levels were fine, except it's a bit high pm, so I take Holy Basil for that).
So everything else seems to be ok, so would I be right in thinking I've upped my NDT too far?
Thanks for the advice in advance.
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Nico101
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So, those labs were done on 1 1/2 grains? How long were you on that dose? I certainly wouldn't drop down to 1 grain, that's far too big a jump. Increases/decreases should be by 1/4 grain maximum.
I'm not sure that taking Holy Basil is the right way to go. If your cortisol is low in the morning and high later on, the thing to do is raise it in the morning, not try and decrease it in the afternoon. If you get it higher in the morning, it won't be high in the afternoon, it will sort itself out. If you try reducing it in the afternoon, you could end up reducing it throughout the day. Sounds as if you've already succeeded in raising it a little, so just carry on with what you were doing, and drop the Holy Basil.
Yes, that was 1 1/2, but I'd been on 2 grains for about 3 weeks before I was tested. I went down to 1 1/2 the day before my blood test. I developed rubbery legs and a fluttery tummy and read this might be because of too much NDT - so I dropped it by half a grain. Seeing the result of my blood test, it seems I was right?
My cortisol is high at bedtime and interferes with my sleep, so I have a cup of Holy Basil tea some nights and it sorts me out. I was taking prednisone in the am to raise my cortisol, but I stopped that about a month ago - it's encouraging to see my cortisol is still going up in the am despite stopping prednisone, so I think it will gradually return to normal. I'm not really concerned about that anymore, it's the thyroid that's causing the issues.
So, do you think I should drop down to 1 1/4 grain (I was only on 1 3/4 for 2 days, so I'm guessing that's not a huge issue to ignore that increase?)? Or should I try 1 1/2 for a while? If so, how long should I stay on that dose before I've been on it long enough to reevaluate my dose? How long does one normally need to stay on a dose to find out if it's the right dose?
Seeing the result of my blood test, it seems I was right?
No, those labs are worthless if you reduced 3 weeks before. You need to leave at least six weeks after a dose change before testing. You've been doing too much jumping around with doses. Leave it as it is for six weeks, then test again.
Yes, I came to realise I'd messed up with the doses. I was gradually increasing every 2 weeks, as advised on here, and I think I mistook symptoms as not having enough NDT and continued to raise it up to 2. Then I went really weird all of a sudden and looked up the symptoms. My research suggested over-medication, so I dropped down to 1 1/2, as I felt awful. Rubber legs, jittery but tired, craving carbs again despite a LCHF diet.
On top of that, my endo frightened the life out of me by pretty much telling me I was going to have a heart attack due to having familial hyper-cholesterol, or fall over and break my neck due to osteoporosis. She wasn't that interested in my thyroid, which was why I was there. This sent me on a downward spiral and my diet went out the window - so now my tummy is also playing up due to being on a Haagan Daz diet for 10 days following the appointment
Anyway, panic over for now. I researched cholesterol and am not worried about that now. My DEXA scan results came back yesterday and there hasn't been a huge deterioration for 3 years. That said, I need to get some energy back so I can lift weights and I am hyper-conscious of time going by spent lying around because I'm too tired to do anything but the basics.
I think I expected more immediate results with NDT. Under Dr P I was started on Metavive 2 years ago and within a few days I was absolutely hyper - and I understand there is very little hormone in Metavive. Am I right in thinking there is a delay in response to an increase in NDT?
I'm just finding it all very confusing. Others on here talk about tweaking doses when they notice a change in symptoms, but I don't know how to tell the difference - although the rubbery legs was a new one. Are there any symptoms at all that are exclusive to over-medication to look out for?
So, just to clarify, it would appear from the blood work that I have over-medicated? I should now stay on 1 1/2 grains for another 4 weeks (that would make it 6-7 weeks on 1 1/2)? Or 5 weeks - 6-7 weeks after the blood test?
I need a clear plan to stick to in order to finally get this right and feel better. I appreciate your help in this.
It's also worth mentioning that I have hit peaks where I did have more energy for a while. But like others have said on here, that fades after a week or two - hence me putting the dose up in response to that. Are you saying I shouldn't be too hasty and wait longer before upping my dose?
I was also confused by the endo who said she thought 2 grains of NDT would be the equivalent of a starting dose of Levo - 100 mg. On the bottle it says one grain is 38 mcg - so 2 grains isn't even the equivalent of a starting dose of Levo, unless my calculations are wrong? Or does the T3 in NDT make the difference?
Am I right in thinking there is a delay in response to an increase in NDT?
That depends very much on the person. There's no general rule.
I'm just finding it all very confusing. Others on here talk about tweaking doses when they notice a change in symptoms, but I don't know how to tell the difference
You don't yet know your body as well as they do. That comes with years of listening to your body and trying to understand what it's telling you. I'm sure that if you persist, you'll get to that point, too.
Are there any symptoms at all that are exclusive to over-medication to look out for?
The problem with thyroid symptoms is that they're all non specific. All of them could be 'something else', and most of them could be either hypo or 'hyper'. But, I think that if you get a combination of racing heart and loose bowels, you're probably over-medicated.
So, just to clarify, it would appear from the blood work that I have over-medicated?
I wouldn't say that, because you haven't given any of the dose changes time to settle. I don't think you can assume anything from those labs. What you want is 6-8 weeks on a steady dose to know what it's doing.
It's also worth mentioning that I have hit peaks where I did have more energy for a while. But like others have said on here, that fades after a week or two - hence me putting the dose up in response to that. Are you saying I shouldn't be too hasty and wait longer before upping my dose?
In the beginning, one can increase NDT by 1/4 grain every two weeks, until you get to 1 grain, then hold for six weeks and retest. You then have to decide, according to the results and how you feel, how near you're likely to be to your sweet spot. If you're nearly there, you need to slow down on the increases - longer gaps between them - so that you don't go over without noticing. But, if, however, your results are still way out, you can continue increasing every two weeks until 2 grains, hold for six weeks and retest. What is bad is upping and downing the dose in rapid succession. It's very stressful for your body. These are the difficult things about self-treating - although god knows, very few doctors know how to get it right! The most important thing is patience. You can't rush hormones.
I was also confused by the endo who said she thought 2 grains of NDT would be the equivalent of a starting dose of Levo - 100 mg.
Oh, lord! They just have no idea. For a start, a starter dose of levo is 50 mcg, not 100, that would be too much for most people.
On the bottle it says one grain is 38 mcg - so 2 grains isn't even the equivalent of a starting dose of Levo, unless my calculations are wrong? Or does the T3 in NDT make the difference?
The T3 in NDT does indeed make a difference, but not that much of a difference! It's impossible to calculate exactly, because there are so many variables from person to person, like how well you absorb and how well you convert. But, we normally take it that one grain is equal to 100 mcg levo to start with, and adjust from there to suit the person.
If does seem confusing at first, but you soon get used to it. But, first of all you have to accept that all areas of thyroid treatment are grey areas, there is no black and white; and finding the right dose is a case of methodical trial and error.
One grain of NDT is approx 65mcg of levo equivalent. The mg on the pack has nothing to do with active ingredients, which are about 38mcg T4 and 9mcg T3, so 1 grain is just a little more than a starter dose of levo
Hmmm…. It's often said on here that 1 grain is equal to about 100 mcg levo. But, as I said, it's impossible to calculate exactly the equivalence. But, I do know how much of what is in one grain.
Bear in mind that the blood tests were introduced along with levothyroxine, therefore if we take any other thyroid hormones then the tests cannot correlate. NDT containing T3.T4, T3, T2, T1 and calcitonin.
Also keep in mind that most doctors in those days when only NDT was prescribed knew all the symptoms of thyroid problems and they did the diagnosis, not a blood test and dose was gradually increased until symptoms resolved.
I will add in this link and this doctor only took one blood test for the initial diagnosis and thereafter it was all about small increments every few weeks until patient's symptoms were relieved. He also would never prescribe levo.
Thank you for this link. It's really good - just what I've been looking for, in fact.
Reading the info on the site and the link to STTM, I'm wondering if I'm now overmedicated a bit as I'm almost at the 3 month mark with LDN. They say that's when the effects kick in - although with some people it can be sooner and on a lower dose than standard. I'd forgotten about that.
I think I'll try and split my dose - see if it stops the jitters - and monitor my symptoms with the graph and form from that link.
If I'm still jittery with weak muscles after that, I'll perhaps drop down 1/4 grain.
My basal temperature has gone up to 36.4 - it was as low as 35.2 a couple of months ago - so that seems to show something has improved. And my blood pressure has come down, although not ideal - but them I'm not fit right now.
That said, I got up to 2 grains and at no point on that journey did I ever feel really well - although I've felt a damned sight better than I do now. But in mitigation, I've had a crap few months (broke my wrist and ankle - no wonder my BP was high!), and then my endo scared me unnecessarily, since the cholesterol and heart issues she made a big deal out of are probably all down to the Hashi's... which she should know!
Yes 'She Should Know' but apparently does not, so this leaves the patient in a conundrom. A higher cholesterol, which we nearly all have if we've been undiagnosed is due to being hypothyroid and everything slows down, i.e. pulse etc, sometime even thinking is slower too. This is an excerpt from an earlier post and Clutter has given this statement, which I think is better at explaining the puzzlement of some about NDT:-
"38mcg T4 + 9 mcg T3 is equivalent to 74mcg T4 using 4:1 ratio manuf. use. They are not saying 38+9 adds up to 100mcg. They are saying the bioactive equivalent of 38mcg T4 + 9mcg is the same as 100mcg T4 would deliver.
6 grains would deliver the same impact as 600mcg of T4. I don't know why you say, clearly not, there are a few members on 6-8 grains, several on >500mcg T4 and one posted recently she was taking 1,000mcg T4, certainly the highest dose I've seen reported on the forum.
Do you take your 2 grains at one time or split the dose? And your correct 2 grains does not equal 100 it’s more like 76 and I found that a lot of Endo/GP don’t understand AT dosing.
I'm currently taking 1 1/2 - I dropped down after I started to feel weird - but I do take it in one go. Starting to think I may be better off splitting the dose.
Yes, I read that in the info and it made me think... and yet there are may on here who feel better splitting the dose! It's like navigating a maze with a blindfold on - so confused.
When taking NDT it is more about how you feel, and if there is an improvement in the relief of your symptoms or not.
The blood test and ranges were introduced alongside Levothyroxine in the 1950s as the New " wonder medication " for hypothyroidism.
If you are having " to keep within the NHS system " I understand you're wanting to gauge where you are in relation to the ranges the NHS work to : but NDT will not reflect in your blood the same way that synthetic medication would,
I am self medicating with NDT, and I am now 10 months in, and seem stable on 1 + 1/2 grains which I take at around 3/4 in the morning. If I try 1 + 3/4 I feel anxious and edgy and act like a fridge magnet, constantly stuck on the fridge door looking for food.
I drop back down and here I have stayed. I am much improved, and funnily enough I'm still improving with no actual increase in the NDT.
If I needed to get a blood test for my doctor, I'd leave a 24 hour gap, much like I would have done when on Levothyroxine.
This would give me a low T3 which seems to be what the NHS think is good, though it isn't good l for me if I want some QOL .
I have only taken one blood test in 10 months, and my T3 came in at 7.8 after 12 hours.
I wasn't over medicated, I've been there, and I know the symptoms.
I don't think there is any point in trying to equate NDT results with a regime developed by Big Pharma in the 1950's that was for an alternative treatment to NDT.
Sadly very few doctors know how to medicate with NDT and in fact, years ago, patients were believed, and if you still had symptoms, you were given a little more thyroid hormone to chew on. It was all about dosing to relieve symptoms and ideally that is what it should be all about in 2019 and doctors should be well briefed on all thyroid hormone replacement options.
I'm with Graves Disease post RAI and was only ever treated with Levothyroxine whilst I stayed in the NHS system.
I find the symptoms too confusing - I can't tell the difference between under and over-medication. I'm hoping that will change with experience, but for now, I have been guided by advice on here to test my bloods regularly while I increase my dose.
It's very interesting what you said about splitting the dose - maybe that's where I'm going wrong. Lately I've been very jittery and constantly hungry. Trouble is, it's hard to find a time during the day where there is 2 hours to spare either side of a dose of NDT.
Perhaps I need to find a space in the day to take the rest of my NDT.
What time of day do you take the rest of your dose?
I do not split my dose I take 1+ 1/2 Thyroid S in the early morning.
As I understand things the " S " in the brand choice stands for slow release.
None of us has the same starting point or symptoms and it's a learning curve for us all.
I have spent two years building up my vitamins, minerals, and adrenals.
I have been ill with the consequences of RAI, the treatment I was instructed to have for the original diagnosis of Graves Disease : I still have Graves and now also manage thyroid eye disease and hypothyroidism. Full details on my profile page :
Since I now self medicate I have had to take responsibility for myself and I undertake private medical blood tests on a yearly basis, whilst I try to adjust and medicate for myself. It's not a road I would have chosen to go down, but found no further options available to me within the NHS system.
Maybe try splitting your dose, many people do this.
Ok, maybe I should try splitting the dose in my case. I need to get organised so I can monitor symptoms.
Yes, it took me 2 years to get my adrenals back to some sort of normality. It's slow work. And no, the NHS does sweet FA for us - although I now have a GP with Hashi's, so I can get tests done that other GPs may not want to do.
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