Hi all, after 12 years of hypothyroidism (hashi’s) and never feeling the same I have finally been prescribed T3 by a private Endos. I have seen so many Endos now including “top” professors on Harley Street and yet nobody wanted to give me T3.
My T3 arrives tomorrow and then I can start.
I will be continuing my morning dose of T4 of 150mcg which I have been on for years now. Adding in 5mcg of T3 twice a day (ie, 10 mcg per day in total). I have been told the T3 should be with the T4 in the AM and then second dose with lunch.
Any tips or experiences would be appreciated. What to expect on the first few days and what to watch out for.
The T3 will be coming from Roseway Labs which is a compounding pharmacy. They charge £60 a month for 10mcg per day.
Note that I have edited this post, I mistakenly had typed £30 per month when it should be £60 a month.
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Wired123
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Looking at previous post - Ft4 was quite high in range at 20 (12-22)
You might want to reduce Levothyroxine a tiny bit - down to 137.5mcg
Usually endo’s want to reduce levothyroxine too much, odd your endo doesn’t want to reduce levothyroxine at all
Usually we recommend only adding 5mcg for first few days .....see how that goes
Then add 2nd 5mcg mid-late afternoon
Waiting 6-8 weeks to retest levels
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)
If/when also on T3, make sure to take last 5mcg of daily dose 8-12 hours prior to test, even if this means adjusting time or splitting of dose day before test
As you have Hashimoto’s Are you on strictly gluten free diet? Or dairy free diet?
Yes I challenged him on the T4 but he said to leave as is. Was expecting to drop it but he claims adding T3 should not affect T4 levels.
Retest in 4 weeks he says. Interestingly he says on the say of test take the morning T3 (drop the T4) and the test 4-5 hours after the T3.
I’m very low wheat but do eat cheese. Going completely wheat and dairy free is also a goal of mine as I feel better when I don’t consume either. I do well on a low carb diet.
I know how thrilled you are and wish you all the best for your next journey with T3/T4 combination.
Whatever variation I've taken, I have taken one dose when I get up with one glass of water. Otherwise I think it becomes a nuisance if you split because you have to have an empty stomach and wait for an appropriate time after taking it and our day becomes ruled with taking tablets and we've to do this for a lifetime wherever we are.
This may be helpful and is by an expert in the use of T3 (he'd never prescribe levothyroxine) only NDT of T3 alone. Dr Lowe was also an Adviser to TUK before his accidental death. He resigned his Licence so that he could advise those who were not improving on levothyroxine.
Excerpt
For an occasional patient, then, the temperature and sense of well-being may not be good barometers of thyroid hormone-induced change. Because of this, if you were a patient of mine, I'd prefer that you watch two types of gauges as you move up toward your optimal dose of HSF.
First, I'd ask you to use your basal armpit temperature, but I'd also ask you to use three other physiological measurements: your basal heart rate, basal blood pressure, and your fasting weight. Second, I'd ask that you record estimates of your sense of well-being, but I'd also ask you to estimate how severe your predominant hypothyroid symptoms are.
With these two sets of measurements you can quickly and easily monitor your responses to different daily doses of HSF. When you reach the dose that’s right for you, you'll subjectively feel good, but you'll also have your monitoring record to verify in objective terms how much you've improved.
We are all different SlowDragon but I followed Dr Lowe's advice and it worked for me. I am aware that many split their doses but Dr Lowe - who also took T3 - didn't and neither did his patients. Even if he prescribed NDT it was once daily . It also means - if the method suits -you have freedom.
I've never had the gene tested but I can certainly say I was even more unwell on levo (diagnosed when TSH was 100 - by myself) and it was an immense difference when T3 was added to T4 and then on T3 alone all symptoms resolved.
Does this also mean we are seeing a breakthrough in the cost of Liothyronine in the Uk :
I'm not on T3 so out of that " loop " but thought people were having to have their T3 prescriptions fulfilled in Germany so not to incur excessive prices, and also having the additional worry of what happens after Brexit ?
I wonder what the NHS is currently paying for " bulk T3 " ?
When I worked in a hospital pharmacy many years ago we were sent lists of the pharmaceutical companies that the NHS had given contracts to. I do wonder how they got the contracts because the Principal Pharmacist and sometimes us were taken out for expensive meals. However the Consultants were taken on cruises and given lots of freebies. I do realize this is not the case now but it was normal years ago.
I worked in the HQ of a large global pharma. There’s massive restrictions on freebies but these days they take doctors to conferences which to me is still a bribe to a certain extent as a lot of these conferences are in nice cities.
Onto the cost of the drugs, the NHS often run tenders for different drugs and companies bid to supply the NHS. Clearly competition is not working if we are paying ridiculous prices.
Hi - I also saw that going on when I worked in independent pharmacy but not with pharmacist or staff. We had a Doctors surgery across the road, visible to our pharmacy. Every Friday the surgery used to close early for lunch and have just over 2 hours, this is the time the pharmaceutical reps turned up bringing all their M & S goodies for the Doctors and staff . We were told the GP's were given tickets to the Grand Prix, concert tickets, holidays, weekends away etc .. all paid for. We always knew when they had been "bribed" by something really good by the prescriptions that came through afterwards - nothing to do with whats best for the patients but who gives them the best jolly.
I think there may still be 'benefits in kind' given to doctors/specialists as it is worth it for Big Pharma.
So those experts who take 'payments in kind' from pharma companies are of great benefit to them but it may be without considering that some patients will find no benefit at all.
I wasn't referring to anything in particular just how big pfizer is. I have always taken an interest in drug companies from when I used to work in a hospital pharmacy.
Ah, I thought there was something astounding in where the vaccine came from. The actual science behind the vaccine is a small German company, I believe Pfizer are providing the production and marketing support.
I know, a married couple worked on it. I have no intention I having this vaccine until I have seen how it reacts on other people. I haven't had the flu vaccine for years and my husband was offered one and he didn't have it either. Both him and I think we had the coronavirus back in January and we were ill for 2 months with a high temperature and cough. The NHS have asked me to fill in 2 forms about it but they haven't asked me for an antibody test yet. I even had a chest x-ray when I was sent to A & E which showed inflamed lungs for which I was given steroids. I don't understand why they are not testing everyone to see if they have the antibodies.
Roseway Labs is listed on the Thyroid uk website and only accepts private prescriptions
So if they can do it, the prices listed above are all the more alarming.
I hope this is a game changer for so many on here who are likely facing T3 sourcing restrictions once Brexit is finalised.
Having paid into the NHS with a full stamp for over 40 years I find I am having to source my own thyroid hormone replacement as I was declined both T3 and NDT by my NHS service
Hi. I've just started with Thybon Henning from Roseway Labs. 20mcg tablets cost £1 a tablet. £30 for 30 days. I was way less shocked than I was prepared to be.
Absolutely brilliant. You should start feeling much better within a few days of starting.
Like you I was only on Levothyroxine for 11 years and always needed T3 as I’m positive DIO2 gene tested.
My private only Endocrinologist explained to me to remain on my original dose of Levothyroxine of 75mcg which takes me to the top of my T4 range. I took 5mcg twice a day. First dose when I got up and the second dose at 2/3pm. T3 has a half life of 2/3 days and the initial dose lasts about 8/10 hrs. So taking it every 8/10hrs is better for your body. Our hormones like a smooth and steady flow. You may find that you dip in the evenings if you take your second dose too early. Especially if you are a poor converter of Levothyroxine to T3. Which I am. Maybe others that take it in one hit don’t have the conversion disorder? I agree with Slowdragon snd take it every 8/9 hrs approx. I have my lunch about 1pm so taking it at 2.30pm fits in quite nicely. I now have added a third dose of 5mcg as I’m exercising more. You may find as time goes on if you are exercising or have more activity going on you may need to increase. And if your TSH starts going suppressed in the future look to reducing your T4 rather than T3 first if your T4 levels are in the top of the range.
Well done I’m really pleased for you. However, the cost seems very high at £60 a month. I pay £60 for x200 tablets. Which last me a full year. I get mine privately from Bennewitz in Germany and they are extremely professional.
I’ve asked Prof W’s secretary Valerie recently and she replied saying they don’t know. And will only know once they send off a prescription post 1st Jan 21. I also asked Bennewitz in a letter when I sent off for my most recent prescription. They didn’t answer. It’s rather concerning for many I guess. This shambolic government needs to get this deal sorted. I voted remain and I’m mad as hell with this government. I don’t mind paying more just so long as I get them. Failing getting them I will revert to the NHS. But then what will happen to that supply also? I get Mayne Pharma 5mcg which are manufactured in Germany too.
Fingers crossed, the tablets should arrive later today!!! I’m like a child at Xmas!
The cost of mine is based on using a UK supplier (Roseway Labs). Maybe longer term I will try using a foreign supplier, depending on how things go with Brexit as you mention.
Did you go straight to 2 doses of 5mcg a day or did you taper it in for a few days?
I started with 5mcg twice a day. 7.30am then 2.30pm. That worked really well for me. In fact I went from being unable to stand or walk as I got so bad, to walking 10 miles within a few weeks. I noticed an immediate positive response. I hope you do too. Do you have the DIO2 faulty gene? I have.
Oh might be taking longer due to covid. Mine took 3 weeks and was positive. My sister’s took 1 week and hers was negative. I think from reading posts on here if it takes a while it’s probably going to be positive. It’ll be good if it is for you as you will know what is wrong and why it’s wrong. I was relieved to find out mine was positive as at last I fully understood why I’d been so up and down on just Levothyroxine for over a decade. My GP was also pleased to get the positive report. He scanned it onto my NHS file. At least no one can argue with that. You never know if you’ll end up in hospital one day and then Drs can view your file. Do you have Patient Access? If not I’d get it if I was you. It’s great to check back on test results, booking appointments and repeat prescriptions.
I'm puzzled about the cost. I've just bought 6 months supply of Thybon Henning T3 from Roseway Labs and they cost £1 for a 20mcg tablet. So my monthly cost is £30. Have you got 5mcg tablets? I have heard they can be more expensive. If that's the case you could consider cutting the bigger tablets up and saving some money next time you need a repeat.
Like I said, it’s much more reduced compared to before as there are rules in place. There’s very little allowed anymore.
However I have to say that the sales reps the company employed were quite flirtatious if you know what I mean and that can only help massage a doctor’s ego and lead to prescribing. Not sure how they can legislate for that kind of behaviour!
I worked as a doctor’s receptionist. They were always being sent freebies without asking so didn’t really mean anything. They gave drug reps short shrift as didn’t have time to entertain them. Don't know how drug reps if they still exist operate but I’d imagine most stuff is online.
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