Amazing but true. Hospital in King's Lynn. He actually listened to me!!! WOW. But I am afraid what he then prescribed seems to be causing me issues.
Before I was on 3.5 grains of Thiroyd. Moved to Thyroid S at 3 grains and all well so far.
Doctor not happy asked me to see an endo. What can I lose eh? He prescribed levo and T3. Without even an argument. 150m levo and 20m T3.
Now the joint ache is back with a vengeance. I am a musician and playing last weekend was painful and not at all to my usual standard. Hands and also hips.
Is this because of the change to Levo and T3?
I am getting a bit desperate as my work depends on this!!
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It takes time to adjust the dosing to suit. With NDT the ratio of T4 to T3 is fixed. Now you have to alter T4 and T3 doses to find what suits you best. Only alter 1 at a time though.From looking at the internet:
Thyroid is 35mcg T4 and 8.31 T3 so you were approx getting 122 T4 and 29 T3 with your dose of that.
Thyroid S is 38 T4 and 9 T3 so you were getting roughly 114 T4 and 27 T3 on that.
So maybe 150 levo and 20 T3 is the wrong mix for you - maybe you need less levo and more T3.
Thanks Lalatoot. This is the thinking that I have as well. I have tests coming up in another 6 weeks although as we all know that might not help.Thanks for your reply.
Just going to reply, but had the same thoughts as already posted.
No thyroid hormone replacement works well if our core strength vitamins and minerals, ferritin, folate, B12 and vitamin D are not maintained at optimal levels - are these worth getting checked out ?
Were you splitting your dose, and are still doing so ?
Anything else happening ?
I take Thyroid S but haven't needed to open a new bottle yet - it was said to be reformulated last year and the reason why supplies and suppliers showed No Stock " for several months.
When it did come back into the market place, it seems the manufacturer decided to also become the supplier creating something of a monopoly for this brand of NDT - and I 'm not sure how that's going to work out long term for any of us.
Hello Pennyannie and thanks for your reply.I did the vitamin blood test a while ago and it was fine apart from borderline B12 and Iron which I then supplemented (and still do). I supplement with Vitamin D as well although it was fine.
After I had reduced the dose with Thyroid S it was fine. As a veggie I really don't want to take anything non-veggie so I would really like this experiment to work. Just not at the expense of my work.
As for monopolies, it always was just that there were a few suppliers working in between. It became cheaper when they sold it direct.
I supplement with Vitamin D as well although it was fine.
What was your result and how much D3 are you supplementing with?
We have to be careful with D3. As it is fat soluble any excess is stored and can lead to toxicity.
The level recommended by Grassroots Health and the Vit D Society is 100-150nmol/L. If our level is below this we work out the dose we need to bring it up to that level, once achieved we alter dose to maintain it there.
Do you also take D3's very important cofactors - magnesium and Vit K2-MK7?
Are you currently taking T3 as single dose, or splitting into 2 or 3 smaller doses through day
Many people find different brands are not interchangeable for levothyroxine or T3
Absolutely essential to regularly retest vitamin D, folate, ferritin and B12 too
What vitamin supplements are you currently taking
Strongly recommend getting full thyroid and vitamins tested 6-8 weeks after any dose change or brand change
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.
Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis)
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
On T3, day before test ALWAYS split dose into 3 smaller doses spread through the day, taking last 1/3rd 8-12 hours before test
Is this how you do your tests?
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
Wow Slowdragon that is a hell of a reply.I was a member of ThyroidUK for a few years before so a lot of this I do know (although probably needed reminding). I have been hypo with antibodies for over 20 years so it is not something new. I was very ill on T4..in fact so ill I lost my job and crashed the car twice!!! The endos said I was deluded and 'normal'. hahahaha I was far from normal. Anyway thanks to ThyroidUK I found NDT and after a bit of trial and error I got healthy again.
The problem then happened with the loss of supply. Eventually I managed to get on Thyroid S and in the interim period have a fried to thyank for keeping me going.
The one thing I need to revisit is the split dose thing which I am not doing now but did when taking NDT.
On NDT my results for years were exactly the same each time which annoyed previous endos who said I was deluded until I showed them my consistent results. That shut them up on that front but they still argued with me. Testing always before any daily dosing.
But splitting the T3 into 3 is a new one for me as I haven't been prescribed T3 before.
Doctor has asked for the usual tests (T4 and T3) plus Vitamin D after 8 weeks and now I am on week two. I will post these when I have them.
I think Laloot is on the case with the calculations there. But I need to get through the next 6 weeks being able to play music and that is really worrying. Especially as I have a performance in front of a whole college of music coming up.....scary!!!
Brands: Accord levo, T3 unbranded. The T3 the pharmacist was 'difficult' about and had to measure out 4 weeks supply so I didn't see the container they came from. At first they refused to supply me!
Thanks Slowdragon for this. I will let you all know how I get on.
Pharmacist is obligated to tell you which brand T3 you have and to give PIL leaflet too
Only 3 U.K. brands licensed for 20mcg tablets (cost to NHS currently £101 per 28 tablets. Down from £268 at max price when only single licensed supplier)
Mercury Pharma- loose in white pot. Often with very short use by date
Morningside healthcare - blister packed
Teva - blister packed and lactose free
Some pharmacies can source EU Thybon Henning 20mcg tablets (vastly cheaper at £1 per tablet)
Many of us find it essential to split T3 to give smoother results
Others are fine/ or it’s better taking as single dose
But the day before blood test, you need to split the dose even if you don’t need to normally. Otherwise you get false low Ft3 result if you leave 24 hours between last dose and test. Or if take full daily dose at 12 hours before test, get false high Ft3 result
Personally, after much trial an error I find 5mcg at 7am, 3pm and 11pm (ie approx equal 8 hour intervals) gives steady levels and least symptoms
Click on my name of avatar (icon) and look down my list of documents.
Thyroid Hormone Medicines has details such as size and markings on tablets - between easy and very easy to see which you have received.
And, as SlowDragon has said, it is a legal requirement that they supply a Patient Information Leaflet with the medicine - if requested. Further, it must be the PIL for the product supplied - not just any T3 PIL.
Wow Shaws that is different from what others are saying. So I might be under prescribed? The endo said I was on too high a dose really for someone of my stature but tried to mimic the NDT dose I was on.You know if this doesn't sort out for me quite quickly I may have to abandon the experiment and go back on Thyroid S so I can continue to play music.
I also have to state that I'm not medically qualified but had to diagnose myself one hour after I received my original result. GP had phoned to say I had nothing wrong with me as I had pleaded with him before blood test that there was something seriously wrong.
It just could be one the excipients in the T3 that is causing you problems. My own experience with Uni Pharma was that it resolved some of my hypo symptoms and I was feeling a lot less fatigued and, in general, felt a lot better but couldn’t understand why I was getting more and more joint pain, everywhere, which I didn’t have before. After taking this T3 for about five weeks I twigged that my joint pain had started when I started taking Uni Pharma so I stopped taking it and the joint pain disappeared!! I have no idea which of the excipients was responsible and am still trying different brands, all of which have so far given me bad symptoms I didn’t have before taking them.It’s a complete puzzle but something I’ve endured for a very long time, I appear to be hyper sensitive to a lot of meds and fillers 😱
Thanks Gingernut44. I know it is related to the change in meds but how I go about doing anything about it is a mystery. Apart from the joint pain and being a little foggy (only a very little but noticable) I feel ok so far. I got lulled into a false sense of security with the Thiroyd and after finding the correct dose of Thyroid S perhaps I am silly to go down this route at all. Nothing ventured I suppose.
All I can say is, if it ain’t broke, don’t fix it!!! If you still have joint problems by the time of your next blood test, I would simply go back to taking Thyroid S. Doctors who mess with patients meds “just because” don’t have to suffer the consequences.
Yes I am heading in that direction now. Two weeks in and still having joint pains. Tied splitting the dose but that didn't make any difference (as far as I could make out).I got a bit of a fright with the loss of Thiroyd and then Thyroid S with me wondering how I am going to cope with going back on levo. I certainly couldn't do my job.
OK so it has ended in failure. I was getting brain fog and finding myself in the middle of pieces of music (my job) and not knowing where I was. With fingers too stiff to play and eyes that had difficulty in focusing. I phoned the endo and left a message with his secretary. He has replied saying that the blood test results show it is all fine and did I consider looking at these issues as they were unconnected and possibly other issues entirely. BLIMEY! I thought I'd found a good endo. He might be a little better but in the end he toed the line. At least he demonstrated that I needed T3 and not just levo. So I return to Thyroid S again and hope that by next weekend my fingers and brain are working again so I can perform. I might have ended up on anti-inflams and prozac!!
I wrote a very short email response to the endo. I didn't want another enemy to our cause after all. Saying thanks but as far as my health was concerned it was a failure.
Onwards and upwards...... Thanks you lot for your help and replies but as Gingernut said...'If It Ain't Broke Don't Fix It' so I need to repair it again.
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If I were to find a good Endo could they potenially prescribe NDT or t3 and then I buy it myself?
Endo conclusion query
How do I get the NHS endo to prescribe T3?
Letter from Endo to GP I wasn’t meant to see
