Hi everyone ❤️So my compounded ndt as arrived from roseway, it says to take one capsule [ 0.5 grain per capsule] does anyone know what the equivalent is in terms of t3 ,t4 intake🙈.
I've read the leaflet accompany the medication but as always I'm slightly lost as to the ratio
It says...[ T3 liothyronine is approximately four times as potent as[ T4] levothyroxine on a micro gram to micro gram basis) they provide 38mcg levothyroxine and 9mcg liothyronine per grain of thyroid.
My instructions on the bottle are take one daily 0.05 grain ] what is that in T4 , T3???
I'm bothered that 0.5grain will be to much in one go...does anyone thing I should spread it out taking half and half 🤷♀️
This is my first time taking ndt .
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birkie
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you say they want you to take half a grain, so approx 19 mcg T4 and 4.5 mcg T3, where T3 is around 3-4 times as potent as T4. It seems a very low dose but I haven’t read your background so maybe it’s fine, or maybe just a starter dose.
Thanks for the reply, I've had a terrible time on synthetic thyroid hormone , and can't stomach it, I discussed everything with the roseway representative so maby this dose is as you say a starter one, or its to get my body use to it then increase after blood work..if I need to.Was just bothered it was to high a dose, as I was hypersensitivity to synthetic T3🤦♀️
When I started on NDT - I stopped taking synthetic T4 x125mcg one day and started on 1/2 grain the following day which was around 4.50 mcg T3 + 19 mcg T4 -
- and then weekly increased my dose by 1/4 grains - so as the T4 reduced in my body I was building back up with NDT for a smooth transition from one treatment option to another.
I monitored myself on blood pressure, pulse and body temperature AM and PM - and whilst the first 2 remained constant I tracked my temperature slowly start rising from 35.4 to 36.6 where it generally sits now some 6 years on.
I got as far as 1+3/4 grains and felt a bit uncomfortable in my skin, anxious, edgey, so dropped down to the previous weeks dose - 1 + 1/2 grains where I had no symptoms - stayed on this dose 8 weeks and then ran a blood test -
my T3 was 110% with my T4 at 25 % - through the ranges - the exact opposite of when on T4 monotherapy - I wasn't aware of any negative symptoms - felt fine - and am still taking 1 + 1/2 grains 6 years later and doing ok:
Seeing as you have no T4 left in your body I would think you could go straight to 1 grain
What was suggested by the Roseway thyroid specialist when they learnt you were left with no thyroid hormone support and after a thyroidectomy for Graves Disease ?
Are you dosing once or twice a day - interested to know what the leaflet suggests !!
They were very thorough, I filled in the forms and spoke to a representative.. about my journey on synthetic t4 t3 [ never done combo t4,t3] I've alway been given either t4 or t3 .
Endocrinologists looking over my bloods even writing reports to gp saying I was having absorption issues due to diarrhoea ect..but not doing anything constructive other than putting me back on t4, there go to drug🙄 [ don't get me wrong it works for some, including my own mother who was hypothyroid] but that in its self is the definition of madness, knowing I was not doing well on synthetic hormone replacement but putting me back on the very worst ..T4 ...it never restored my T3 to good levels and the silly Endocrinologists knew this....my analogy of it is like...you see a gp..you have a peanut allergy and the gp pescribes you a tablet with peanut in it and continues to pescribe it...at some point that patient will have a very bad reaction to it.
The roseway representative was more interested in getting me a compound to suit my gastric needs, which I was grateful for , I mentioned I'd been on and off thyroid medication for the last 4 and a half years coming of at periods to see if it was the synthetic thyroid giving me the side effects, which it was and to give my bowles and stomach a rest and for the inflammation to subside..which it always does👍
She obviously said it's not a good thing not taking any thyroid hormone replacement when you have no thyroid, but understood why I did it she also said to keep her informed as to how I do on this compound she as done for me🥰
I've been given 0.05mcg it says take one daily , I think she wants me to start low and build up , I want to see if I can stomach it ,I'll know in around 3/4 days if its going to effect my stomach and bowels.
Good - ok - first off - lets hope you can tolerate the capsules and you are starting on 1/2 a grain -
I went up weekly in 1/4 grain tablets - chopping t1 grain tablets into 4 - but you don't have this option as taking capsules - though I know of someone splitting capsules - and saving half the powder content for a second dose.
Some people dose once a day - others take 2 doses - I guess it's something you'll need to consider once hopefully you get over the first week and without stomach upsets.
Did the Roseway consultant or the paperwork suggest splitting the dose ?
I take all my NDT - 1 + 1/2 grains at around 2/3 am at a toilet break - so on an empty stomach and well away from food and anything else - other than the sip of water to take down the NDT.
She mentioned they were capsules, and I told her I have had gut problems with other capsules so she advised me to take the power out and take with water on an empty stomach, I did this with t3 because some were capsules. So I could split the dose with these ntd ones👍 I took one 0.5 grain at 11am today when they arrived 😄[ taken out of the capsule] with water.
I told her I would probably split the dose and she seemed OK with that👍
Oh - ok then - sounds like a plan - so pure NDT and no fillers at all -
Doubt there was enough in this first dose to make you feel anything happening - hopefully you be able to do this for a week and have no stomach upset - and then think about adding to or taking an afternoon dose.
I know of someone else on capsules without a thyroid and with Graves and she was started on 2 grain capsules after her thyroidectomy as T4 monotherapy did not relieve any of her symptoms -
she was told to take the 1 capsule containing 2 grains all at once - and this worked and she is aware- after an hour orso after taking the medicine of it taking effect - I too feel a small surge around 2 hours after taking my tablets but not so strong as to fully wake me up.
Then the 39 has to convert to the T3. This is a very low dose but it depends on what you have been taking recently. This is not synthetic T3 but natural.
Yeah just trying to work out what I'm actually taking 🙈 Obviously when I was on synthetic T4, T3 I could only manage a small amount, [ stomach/ gut issues and sensitivity to the synthetic medication] so I got to 25mg t3 but couldn't stay on it...and got to just over 25mg on T4 but had to come off it for same reason.
OK thanks tattybogle....so this is the million dollar question....do u think I should stay on 0.5 grain for say 5 days [ if I get past 5 days without any stomach and gut issues I can be sure this is OK, because on the synthetic I know within 3/4 days if it affects me]Then if I have no stomach/gut issues I can take 2 capsules 0.5...0.5 [ probably spread this amount out to begin with.. say morning/ evening 🤷♀️
I don't feel qualified to offer an opinion on what you should do now birkie , you have lot more experience of taking things containing T3 than i do, and i have never had to deal with any gut issues.
Thanks for your honesty tattybogle 🥰I suppose I will just need to get through the next 5 days crossing everything I don't have any stomach/gut issues.
But as some have mentioned 0.5grain is a small amount...although maby its OK for me....[maby]..but I reckon I'll need to increase at some point , maby see how I go then increase, then get bloods done see what my TSH ,T4 , T3 is and go from there👍
No worries : yes - it's very bright here - everyone's in their gardens - and I've got my blackout blinds way down - and in the dark and hiding - people must think I'm mad !!!
I don't think your mad I do the same here. I had a flat in Malta for 10 years a holiday home but having to visit in the school holidays was hell on earth but a wonderful island with lovely people. Too hot in August though!! I am in hiding again this morning.
It says on the leaflet....they provided 38mcg [T4] and 9mcg [ T3] per grain of thyroid compound natural dessicated thyroid capsule. And 0.5 being one grain........I think🙈🙈🙈🙈🙈🙈
I just realised that I made a bad mistake you should in fact half the amounts that I stated. i.e. half is about 19,5 T4 and the T3 about 4.5 The same thing applies to the 19.4 T4 which still has to convert to T3.
The is complicated...Firstly I was diagnosed with primary hyperparathyroidism in 2004 from bloods and urine calcium, I knew nothing of this disease then and the endocrinologists did watch and wait, over that time I've gone on to develop kidney stones, calcification in most joints and my heart ,lost around 5 teeth have ostiopeania mainly in the spine .
Now... endocrinologists know very little about thyroid conditions..they know less about hyperparathyroidism, this was picked up again in 2019 after full thyroidectomy, after I joined this site I was advised to get all printouts of blood work, it was on one print out I noticed my calcium was over range [2.67] I never linked it to primary hyperparathyroidism because I didn't really know anything about the condition.
But I thought maby my hypothyroidism was causing the high calcium 🙈 I went back to gp and requested my last bloods ..from these again my calcium was raised [2,75] so I asked why? Gp just gaslit me first but then I actually looked into the cause of over range calcium, of course it came up with PRIMARY HYPERPARATHYROIDISM my son immediately remembered I'd had that condition before in 2004 as he cared for me because I was very ill .
He got my medical records and bam!!! there it was diagnosis PRIMARY HYPERPARATHYROIDISM approach watch and wait🙈
Have you any idea how many endocrinologists leave people with primary hyperparathyroidism because they don't deem it bad enough to operate??? Thousands 😡
My eyes have been well and truly opened since 2019, I asked my gp to investigate why my calcium was over range [ I found high calciums some ranging from [2.89] [2.76][2.69] and so on going back 5 years ...no parathyroid done alongside these high calciums.
My gp sent my bloods to an endo she in turn did [cal,pth,vit d on 2 consecutive occasions then wrote saying I probably have primary hyperparathyroidism .
I said "what do we do now"
Ho nothing we will just watch your calcium 😡 ...my son said no!! and got me a private appointment with a parathyroid surgeon in Oxford who agreed I have nomocalcemic hyperparathyroidism which means my calcium is either over range or just within range but either way the treatment is the same parathyroidectomy.
He sent me to Liverpool to another parathyroid surgeon because he was private and I couldn't afford the 6 thousand pounds for the op, this surgeon did further blood work and concluded I do actually have primary hyperparathyroidism 👍
Now here's the kicker...or the nhs guidelines...in there lovely guidelines for primary hyperparathyroidism the nhs want your calcium to reach 2.85 on 3 separate occasions, and your pth to be servery high before they will operate also they want a target...where the adenoma is located,all this before they will consider the op.
This does not alway present its self this way, because you can have calcium that bounces in and out of range , and pth can do the same also ....so they just do watch and wait 😡..watch as we develop kidney stones, ostiopeania, osteoporosis, kidney damage [as in my case] and it goes on😡 read up on it you'll be amazed , practically the same as they do with thyroid sufferers.
I asked my surgeon when I saw him after my second diagnosis of primary hyperparathyroidism in 2019..why couldn't he have removed the offending adenoma?
He laughed saying " have you any idea just how small your parathyroid glands are? They are the size of a grain of rice and not always located behind your thyroid, they can migrate to other places within the neck cavity , and even if they go overactive they can be very hard to find, I was going in to your neck pacificaly to remove your thyroid , not to fiddle around looking for a rouge parathyroid gland.
He then told me I would need to seek a scan to locate it which I'm doing at present in Liverpool
If I had the 7 thousand [that was the last quote I got from Oxford] the private surgeon would do 4 gland exploration to find it...but I don't have that kind of money..so I'm left , like thousands of us in nhs limbo😡😡 until the adenoma is identified..again this doesn't always happen because a percentage of adenomas don't show up on scans, but this doesn't mean you don't have one or two hidden away causing damage to your organs.
I'm on a parathyroid Web site and the horror story's come in everyday about how as patients we are treated appallingly, it's tantamount to neglect by the very professionals that are supposed to help us😡
Thank you for your answer and I am so sorry for all your problems. I also never knew anything about parathyroid but before my Professor surgeon had located them and replaced them during the TT now in my neck and top of my arm. I do know that your condition causes kidney problems and all sorts of other nasty things
I am glad that I live in France as the health service here is very good.
With such a lot to deal with you are lucky to have a Son that cares for you Birkie.
The one thing I was most annoyed about was my actual thyroidectomy surgeon knowing I have primary hyperparathyroidism and not caring about me, knowing I'll just go on to develop organ damage 😡
Truly these people have no feelings, but I bet if it were his sister,mother,father or brother in the same situation you can bet he'd have them sorted he wouldn't let a member of his family suffer with the condition 😡
Exactly I really cannot understand it at all. Back in the UK I lost the site of my eye due to the GP. I had to go back several times before she sent me to hospital. The surgeon was so cross with her that he rang her to complain.
The next was when I had my second sinus surgery and it was the six weeks check up, The surgeon wanted to check my ears as well. He asked me if it was OK to examine one of them in
another room, I agreed. I had never had an ear ache in my life I was 64 years old. Anyway he pocked about in my ear it was so painful that I nearly passed out. That was then since that I had a tumour in that ear and have lost my hearing. That was back in the UK.
I must say that it's quite the opposite here they tend to treat to quickly here you can come across loads of people here with no thyroid, weird.
Being a Doctor or Surgeon is not the caring job that it once was, Birkie.
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