T3 dosages - Input please

[riannabri]

I can not take any form of T4 or NDT as I cant convert. For 10 years I have been on T3 only but housebound. I was told UP UP UP and that you needed to be on large amounts of T3. I also take Cortef. Last year I was on 56.25 taken the following - I have Hashimotos that flares all the time

7am 31.25mcg with 7.5 cortef

12 noon 12.5mcg T3 with 5mg Cortef

4pm 6.25mcg T3 with 2.5mcg Cortef

10pm 6.25mcg with no cortef

i was on this for years and a total mess physically and mentally then went into a thyroid storm from my hashis and had to reduce to 50mcg dropping the 10pm dose

Then another thyroid storm so had to reduce to 43.75 this time dropping to

7am 25mcg with 7.5 cortef

12 noon 12.5mcg T3 with 5mg Cortef

4pm 6.25mcg T3 with 2.5mcg Cortef

Again im in a throid storm my throat is up and by pain is off the scale, I am told I clip between under and over and its the hyper dumping thats making the pain, I cant walk or even bend my knees - I am so disabled its terrible.

Accidentally I did not take my 4pm T3 (I found it on the floor) so only took 37.5

7am 25mcg with 7.5 cortef

12 noon 12.5mcg T3 with 5mg Cortef

4pm NO T3 with 2.5mcg Cortef

For the first time in ages I can walk a little and my pain is better??????

Does anyone take such a small dose of T3 (37.5mcg) withour T4 divided - I have done this for so long I have no idea what else to do

Thanks in advance

R x

[greygoose]

Did your doctor tell you to take the Cortef at the same time as your T3? You should really take T3 by itself and leave at least two hours before other medication. Also, it's not really a good idea to take Cortef after 1.0 pm.

Do you have Hashi's? Because your dose doesn't sound high enough to give you a thyroid storm on its own - especially if you are reducing absorption by taking it with Cortef. This is all very strange. Do you have any lab results to share with us? Be interesting to see what they've tested, and the results. You sound under-medicated, to me. And, as for ' I am told I clip between under and over and its the hyper dumping thats making the pain' I have no idea what that means! It doesn't make any sense.

Ah, ok, just reread and see that you do have Hashi's. OK, so you reduced your dose. But, it might have been a good idea to put it back up again, after the storm was over.

I take 75 mcg T3 only, but I take it all at once before bed. It often works better that way. And, when I was taking HC, I just took two doses in the morning, but never after 1.0 pm.

I'm thinking you need an increase in dose. But, let's have a look at those results, first.

[riannabri in reply to greygoose]

Was told to take H/C with T3 by all thyroid docs (Holtorf/Lowe/Linder and endo etc)

My hashis keeps flaring to a point where I cant swallow and my throat is killimg me and my TgAb's are over 3000. Thyroid scan shows a massive amount of nodules and lots of inflammation - I have tried everything to stop flares (gluten free/Stone age diet and so on low dose naltraxone and so on but nothing works)

I am only 5ft 2ins and 8 stone so defo not Hypo - I was told that whee my hashis keeps flaring and attacking thyroid that it keeps dumping excess (my own) thyroid hormone into my system

I was at my most well 12 years ago on 37.5mcg taken in 2 doses - 7am = 25mcg & 12.5 @ 12 Noon then Gina lowe wanted me to up it to 50mcg all taken at night and I ended up in ER and my adrenals had shut off I literally had no adrenal function even on an ACTH test a total shut down and they never recovered.

I then was put on H/C in divided dosages with florinef but told by so many docs to keep upping T3 and thats when I became so unwell.

I have been SO SO much better since the T3 was reduced, felt metally me for the first time in ten years on 43.75 divided, My heat intollerance went, so mentally clear but still physically awfull (but probably worse on higher doses)- but only just accidentally forgot my 4pm dose today so that dropped me to 37.5mcg and I feel better already??

So I know that upping is not the solution as Ive been on the lower dose of 43.75 for 6 months and feels as I said so much more me so am wondering if a lower dose may be what works for me??? Is perhaps thats cause im tiny as I say 5ft 2, only 8 stone and tiny feet (3) so its like dosing a child

[greygoose in reply to riannabri]

You've consulted with Dr Lowe? Well, you should know more about this than any of us, then!

So, those doctors told you to take HC, but at the very same time as T3? Are you sure? That goes against everything I've ever heard.

Is your TSH suppressed? It should be, with Hashi's. Do you take selenium? Are all your nutrients optimal?

You don't have to be over-weight to be hypo. Some hypos lose weight. And doses rarely correspond to size and weight. You need what you need, that's all. And, if you have been over-medicated, then obviously you will feel better if you reduce the dose. But, time will tell.

So, your adrenals don't work anymore. That was a detail you neglected to mention - all details are important to get the full picture. That's why we always ask people to post their lab results. And yes, that's right, after an immune attack on the thyroid, the damaged cells dump all their hormone into the blood stream, giving you high levels. But, that doesn't last for ever, and eventually, you go back to being hypo, but even more hypo than before, because you have less working gland to produce hormone.

Have you tried going back to the dose that made you feel well before, before Gina Lowe (who?) made you increase your dose? It's all trial and error, you know. We have to try lots of things before we find what works for us. And, that's the problem with doctors, they think that the same things should work for everybody, and don't give us the scope to experiment. That's why I self-treat.

[riannabri in reply to greygoose]

Yes consulted with John Lowe and Gina Low (his ex wife) and thats when I got my sickest when they crashed my adrenals, then both them Kent Holtorf, henry Linder and endo all said T3 with Hydrocortisone - been doing that for 10 years + as I needed it for life as my adrenals never came back

I was told that my auto immune flares cause a massive TH1/TH2 Cytokine response causing the inflammation - so as soon as my hashis flare and I go over my inflammation goes through the roof

My hashis is weird no major huge nodule just many many small ones

My TSH was always <0.01 on 50mcg T3 yet my hashis still flared and T4 <1.0 as expected - But my natural TSH even before thyroid med was only ever 1.0 yet my T4 was 14 and T3 1.2 so really low - I was told not only did I have hashis but central hypothyroidism

Yet when I was on only on 37.5mcg T3 my TSH was still low but my T4 was 7 but I had the addition of some T3 - like the T4 was a back up but of course as soon as I upped T3 my natural T4 lowered - but I cant take any form of T4 replacement

As I say I have been trying this for 10-15 years and wish I had never started any thyroid meds as its when I did I got so very sick

Now Im just trying to get some stability and that only seems to come with lower doses of T3 - perhaps I need to allow my natural T4 to rise again? as my hashis flares no matter what

I have a comprehensive vitamin/mineral analysis done of literally every vitamin/mineral you can think of and all was replaced so all that is optamised,

Its a complete medical mystery although I must say out of every doc I have ever spoken to Henry Linder is INCREDIBLE he has guided me the best and is so caring

[greygoose in reply to riannabri]

Sorry, I'm afraid all those numbers mean nothing without the ranges.

OK, so it's perfectly possible - and more frequent than doctors think - to have Hashi's and central hypo. That's not a mystery.

I have Hashi's, but only ever had a splattering of small nodules, no big ones, and no goitre, either - ever!

If you have central hypo, then there's no point in even testing the TSH, it means nothing.

If you'd never started the thyroid hormone replacement, I think you'd probably be in a pretty bad state by now. It's the Hashi's causing the problems, not the Synthroid or the Cytomel.

Your vits and mins may have been optimised once, but, as you still have Hash's, you can't expect them to stay that way forever. They should be retested from time to time.

But, I still say, if you feel better with a lower dose of Cytomel, stay on the lowered dose. Where's the problem? As for letting your natural T4 rise, I doubt it will, now. You won't have much gland left after all this time. And, if you have central hypo, you won't have the TSH to stimulate it to make T4. So, that seems like a bit of a lost cause, to me.

And, I'm still concerned about taking Cytomel and Cortef at the exact same time. I agree you need to take both, but there should, surely, be a gap between them.

[riannabri in reply to greygoose]

Thanks for your input,

I have the vitamin/mineral panel (whole blood and red blood cell) count done yearly and remain on Myhills magic mineral complex and her other vitamin mix

I think I will stay on the lower dose and see how I go

Now strangely my eldest sister had Thyroid cancer and had her gland totally removed, shes only on 75mcg T4 nothing else she is the fittest person you ever saw she goes to the gym daily, runs and works full time

Perhaps for some reason we are genetically needing less thyroid med?

I did email Dr Linder about taking HC with T3 last night and he said all his patients do (as do holtorfs) he did say the only thing that could happen is that the T3 pushes the H/C out of the liver too quickly effectively causing a lower HC level

I have hundreds of labs what exactly is it you want to see?

Thanks for your input

x

[greygoose in reply to riannabri]

Well, that all seems a bit superfluous if you're happy to stay on the low dose. And, I'm a bit lost now, as to what your question actually was! lol

[riannabri in reply to greygoose]

It was simply, does anyone cope well on just low does of T3 without T4

[Angel_of_the_North in reply to riannabri]

I'm the same height and weight as you, and I'm hypo. Not being overweight doesn't mean you aren't hypo (and you can still be overfat). Low cortisol tends to make you thinner/lighter. If you have hashi's, you are hypo. The flares and dumping will give you hyper symptoms, but ultimately you are hypo (and will get more so as your thyroid is destroyed). If youare still producing a ton of T4 you might have a thyroxine producing nodule or tumour. Has that been checked out?

[riannabri in reply to Angel_of_the_North]

Yes angel all that is checked out, one thing is my docs have been detailed in scanning, biopsys etc tests etc. It doesnt add up that I am hypo as all my symptoms are Hyper. Take my severe pain for instance in my knees and legs it always came on after my T3 4pm dose and Dr Linder said try stopping your T3 at 4pm and the pain reduced by 50% in hours.

So now I am on only 37.5mcg T3 - and I am probably the best Ive been in many years this morning - I will see how I goes

I was told for so long up up up T3 but I suppose 37.5mcg may be sufficient for me as thats still approx 110mcg equivalant T4

Ive been a mess for so many years on the high doses of T3 so spent the morning looking up tests and symptoms before dosing high and I was at my best on 30mcg T3 taken 25mcg waking & 5mcg Lunch so for now I am going to see what happens on this lower dosage

10-15 years of this is enough but I will get there - I truly know that we are all so different

Unsure about my natural thyrod function as that has been suppressed by T3 so will give it a couple of weeks on lower dosages of T3 then have a full T3/T4/TSH run to see where I am will also get my TgAbs done to see if they are high as they were over 3000 on last check despite having my TSH suppressed to <0.01

[shaws Administrator]

I've always taken T3 or T3/T4 in one dose. I follow this doctors procedure. He himself took 150mcg of T3 in the middle of the night.

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

I have no idea about Cortef but I definitely would not take anything else along with thyroid hormones. You wouldn't know if it would affect the uptake of T3 which is, of course, the only active hormone as you are aware.

This is an excerpt from above:

Third, the leaflet on Cytomel pharmacies give patients when they fill their prescriptions states, "POSSIBLE SIDE EFFECTS: NO COMMON SIDE EFFECTS HAVE BEEN REPORTED with proper use of this medication." This information is accurate—when plain, full-strength, one-time-per-day doses of T3 are used properly, there are no adverse effects. The only adverse effects occur when a patient takes a dosage that for her is excessive. With Cytomel, if overstimulation occurs, it can be stopped with one or two small doses of propranolol. Or the patient can simply reduce her dosage of Cytomel the next time she takes it. I want to emphasize, however, that when our protocol is used properly, there is no overstimulation to be avoided by using timed-release T3. The protocol has safeguards against adverse effects.

[riannabri]

Well I lowered my dose 3 weeks ago and what a difference, within days I was the strongest I have been in a very lomg time - So on 37.5mcg only a day. So all those years of being told Up Up Up were so wrong for me

Just hit a massive Hashi's flare 2 days ago but mine also effects my tendons and joints, so when my throat feels like its being attacked to a point where I cant swallow and its like razorblades the same happens to all the fibres in my knees/ankles/legs and everywhere - I assume my hashi's flare runs hand in hand with some other kind of autoimmune response

BUT I feel finally for the first time in 10 years I am at the correct dosage for me, Just wish I had listened to myself and not the docs telling me T3 had to be taken in massive dosages, as my present Endo says this is an art not a science