struggling with self medicating with NDT, advise appreciated... please

I first started self medicating with ndt (thyroid s) 4 weeks ago and at first it was astonishing... depression and anxiety gone... exhaustion reduced a huge amount and the hard swelling in my throat that has been there for years went, went on the right hand side but still there on the right but much easier to swallow now. I stopped taking anti depressants, stopped taking sleeping pills and stopped taking muscle relaxants :) I was happy and have not felt that way for years... over 15 years. I increased dosage by 1/2 tablet a week but have crashed big time and feel absolutely awful, deep depression again. exhausted again but still sleeping without pills but hitting the brick wall between 2 and 3pm and sleeping then too. Blood pressure is good, much lower than before but fluctuating between 110/65 and 138/78 within minutes and 50% of the time it drops by 10-20 when I stand up and redo it. Heart rate is in 80-90 where as before it was 60-70 though it did get higher then dropped again when I started taking ferrous fumarate. I sent for the genova adrenal test and got results yesterday, been trying to figure it out since and very fog filled maze of a brain is not helping. As I am crashing every afternoon I expected cortisol to be low then but it is actually high then whilst the others are all in range. ?. Am I right in thinking this indicates adrenals are struggling a little rather than adrenal fatigue?

sample 1 25.8 range 7.45-32.56

sample 2 8.95 " 2.76-11.31

sample 3 11.01 " 1.38-7.45

sample 4 1.68 " 0.83-3.86

DHEA sample 1am 1.35 range 0.25-2.22

DHEA sample 3pm 0.63 range "

confused ( as always these days) as I didn't do any samples at those times???????

Oh heck I do hope I am making sense here and apologise if not... I assure you I am trying but brain doing warp speed and bouncing all over the place! :(

Just so down and in so much pain I felt like chucking all the vits and ndt in the bin and kicking myself for being so stupid as to think I could improve my health as false hope hurts like blazes GRRRR But I am NOT a quitter. but wobbling a mite.

If anyone can understand this and has any advise I would be soooo grateful, unsure what my next steps should be.

10 Replies

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  • Hi fibrolinda,

    Welcome to the forum. :)

    I'm afraid you have made what is probably the commonest mistake of all. You raised your dose far too quickly.

    I'll give you some links about dosing with NDT. Please read them. You will quickly see they don't all agree, but none of them recommend increasing dose once a week.

    tpauk.com/forum/resources/h...

    thyrophoenix.com/adjusting_...

    stopthethyroidmadness.com/n...

    In my personal opinion, the last link suggests raising too quickly, but I include it because STTM is a very popular site.

    Another thing that makes a difference to dosing is cortisol levels. Yours are not ideal. The following info is from SSTM and this info I do like!

    "24-HOUR CORTISOL SALIVA: This is an at-home test to evaluate your circadian and cellular cortisol levels at key times during a 24 hour period. It’s more accurate than blood cortisol, we saw repeatedly, since the latter measures both bound and unbound cortisol, not cellular levels like saliva, and thus gives a false idea.

    We noted repeatedly that those will healthy adrenal function will have the following saliva results:

    8 am: at the literal tip top of the range

    11 am-noon: in the upper quarter

    4-5 pm: mid-range

    11 pm to midnight: at the very bottom (literally).

    A DHEA above midrange is good, we saw, but 8 can mean the adrenals are compensating for a problem. For accuracy, patients learned they needed to be off any adrenal support supplement, any medication containing cortisol, any herbs that support adrenal function, or zinc or licorice root for at least two weeks prior to testing…if possible (it may not be possible for some conditions, though–work with your doctor!) Avoid food when spitting into vials. If you wear dentures, remove them to prevent denture adhesives from tainting the spit, says the facilitiies."

    The above is taken from this link : stopthethyroidmadness.com/l...

    With some episodes of high cortisol this will probably slow down your ability to raise dose. Don't try and force the pace. It will back fire on you.

    Have you checked your nutrient levels? Good levels of vitamin B12, folate, vitamin D, iron and ferritin are essential to getting well. If you have those results, please post them for feedback.

    Please note I am not medically trained. I am only writing based on my personal experience and my own reading.

  • I should have said...

    Having raised your dose too quickly you will probably have to have a few days off NDT to allow your levels to drop before starting again. I don't know how long this should be for though. Perhaps someone else can offer a suggestion.

  • first humanbean thank you for defending Sriprasit Pharma and Thyroid S. I did A LOT of research before ordering these and this company has an excellent rep and has had so for many many years.

    second.... the stupid things I do? you can now add spending 3/4 hour replying to you (typing very painful and slow brain means it takes a long time) then just as I was about to finish I hit the wrong button and all gone! sigh.

    I suspected I had been increasing too fast, impatience and OOOO getting worse again, quick take more instead of common sense.

    I am so very grateful for your opinions, VERY.

    I have bought ASHWAGANDHA herbal tabs ready as I suspected cortisol was dipping in the afternoon not going too high. From what I can glean it is fine to take them in my situation anyway and do you think (your opinion only I know :)) If I stop NDT and take them for ????? time then restart NDT.... SLOWLY INCREASING DOSE... This would be the way to go?

    I have Fibromyalgia and a couple of months ago read an article by Dr Starr, it was all about type 2 hypothyroidism in fibro sufferers. Another article by Dr LOwe and eyes are further opened then another saying thyroid treatment isn't a cure for fibro but it can reduce symptoms!!!! OMG Went to thyroid uk website and found I have all the symptoms on the hypo list apart from anaemia and high cholesterol and I went armed to GP. So TSH test from blood taken just after lunch... no warning he was going to take blood... not surprisingly came back as 'normal' 2.34 range I am afraid I do not know as I didn't get results. Yes I know and I will.

    He pretty much patted me on the head and told me I had enough problems health wise and shouldn't worry about this. Didn't read any of my research of course.

    So saved up got test from blue horizon. Did the test from 8-11pm yup in the evening... I mentioned my brain not working right? Took so long cos the blood clotted straight away each time. When I realised my stupidity I sent it anyway results below.

    done 20th august

    TSH 1.74 range 0.27-4.20

    free t3 4.74 " 3.1-6.8

    freet4 15.06 " 12-22

    t4 total 125.4 " 64.5-142.0

    vitamin B12 311 " 250-725

    ferritin 41.1 " 20-150

    serum folate 29.98 " 10.4-42.4

    CRP H 4.00 " <3

    I started B12 1000 slow release, d vits and magnesium plus iron and vit cstraight away I already take a multi vit and mineral. 10 days ago I realised I should be on ferrous not ord iron so got ferrous fumarate 210 which I take 3 times a day with 250 vitc each time.

    when I can afford it ( everything is costing so much:O) I will get a proper test from blue horizon.

    Any comments very gratefully received. my brain just went on holiday so best stop now but thanks again. just telling all this is calming me down.

  • forgot to say ... shocker.... Stop the thyroid madness has been my guide I admit as well as this wonderful forum

  • Think both sites have been a lifeline for many of us, but this site tends to recommend a more balanced approach. :)

    How many grains did you get up to? For some reason those taking NDT in the US seem to be on much higher doses than those which make people well on this site. I've been happily stable on 2 grains a day for nearly a year now. :)

  • I took a look at your adrenal results, and compared them with the suggestions of where the results should be in the reference ranges according to STTM. And although the calculation was a bit of a rough one, (and I hope my arithmetic was okay) your total cortisol output is roughly what you want it to be. It's just the way it is spread out throughout the day that isn't right.

    So, I wouldn't think you need to do anything dramatic to raise or lower your cortisol. Your DHEA seems to be reasonably okay too, although I'm a bit dubious about the timings of those DHEA tests - I think there might be some typos going on somewhere. When I did Genova saliva testing they gave a figure for DHEA derived from samples 2 and 3.

    It appeared on my results as :

    DHEA – Sample 2 (am)

    DHEA – Sample 3 (pm)

    I wonder if your DHEA results were derived from samples 1 and 3 to give you an am and a pm result?

    How to fix your adrenals to give you the correct output at the correct times...

    You might find something helpful at this site : rt3-adrenals.org/

    It is the result of two websites merging - an adrenals site and an rt3 site. The site is aimed at people with low cortisol output (which you don't have), but it covers a huge amount and some of it is very helpful - particularly the stuff about minerals and vitamins. Ignore the stuff about hydrocortisone therapy - it doesn't apply in your situation and would be disastrous and make you very ill.

    I think if you came off NDT for 7 days, took some adrenal support like adaptogens, minerals, and vitamins (not adrenal supplements - I think you have enough cortisol in total) during that time, then re-started your NDT at a much lower dose you should do better next time around. (You would need to continue the adrenal support.)

    But I can't stress enough, I'm not medically qualified, so take everything with a pinch of salt, then check and re-check before doing anything at all.

    Your vitamins and minerals :

    At the time you got your results your B12 was much too low, and so was your ferritin. B12 should be around 1000 according to the Pernicious Anaemia Society - and they should know...

    Ferritin should preferably be mid-range. Don't over-supplement, high iron is not good.

    Folate is fine.

    You need a vitamin D test if you can get one.

    Good luck. :)

    Next time you do your thyroid test, do them early in the morning before breakfast. In fact, unless there is a very good reason to do things differently, always do blood tests early in the morning before breakfast. If you always use the same time and the same conditions it is always easier to compare different sets of tests.

  • thank you so much humanbean you have given me a lot to read and a feeling of some control back :) I admit to nearly losing the plot this morning but now a plan is taking shape.

    thank you again... millions

  • One thing I forgot to mention...

    I take T3 only. And I have high cortisol. The last time it was tested the bulk of the high cortisol was first thing in the morning. I had to take account of this high cortisol for a long time when I treated myself.

    I would split dose. I wanted to take most of my dose first thing in the morning because I wanted energy during the day, not in the evening. But I couldn't tolerate it then and I'm sure it was because of the high cortisol. I had to dose near lunchtime and later in the day. When I got used to whatever dose I was taking at lunchtime I would then move a little bit of it to the morning, but wouldn't actually increase my dose overall. Then I would adjust to that dose and I would then add some more at lunchtime or a little bit more later in the day. Then I would move a tiny bit again, and so on.

    I simply couldn't force a dose on myself when my cortisol was high. So I had to creep towards it.

    The point of this story is that you might find your high cortisol in the afternoon interfering with your dosing. Don't force the pace. If you can't dose in the pattern you want to, then work around it for a week or three or four or six. Then move a tiny bit at a time. I spent ages experimenting with my dosing pattern and number of doses. I had to shift things about and experiment each time I increased my dose. It took a long, long time. But it was worth it in the end.

  • thanks jazzw, I'm up to 3 grains and it seems I've done too quickly... on the bright side if I have to start all over again I may just get 2 weeks of happiness again :):):)

  • Miranda-n I am sorry I did not thank you for taking the time to respond to my cry for help yesterday. I am grateful you took the time and can see you truly believe thyroid s is bad but I assure you I researched it and the company who makes it VERY thoroughly before I ordered it and I am very confident of it being a quality product :)

    I have seen someone on here who has used it for 15 years :)

    So please set your mind at rest but I am very grateful for your concern and thank you again.

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