Hello, my endocrinologist mentioned that he will consider putting me on something other than just T4 as I do not feel better. I was wondering what your experiences have been with the different treatment options: T3 only vs. T3 & T4 combined vs. NDT?
I'd love to hear your opinions. The doctor mentioned all these options to me, so i'm trying to learn more about them to make my own decision on which I'd prefer.
Thank you in advance!
Early March your results were:
TSH: 0.57 mIU/L (Range: 0.27 - 4.2)
Free T3: 4.9 pmol/L (Range: 3.1 - 6.8)
Free Thyroxine (T4): 19.8 pmol/l (Range: 12 - 22)
Thyroglobulin Antibodies: 301.0 IU/mL (Range: 0 - 115)
Thyroid Peroxidase Antibodies: 219.0 IU/mL (Range: 0 - 34)
Ferritin: 190 ug/L (Range: 13 - 150)
CRP HS: 1.1 mg/l (Range: 0 - 5)
Folate - Serum: 3.6 ug/L (Range: > 2.9)
Vitamin B12 - Active: 76 pmol/L (Range: 25.1 - 165)
Vitamin D: 127 nmol/L (Range: 50 - 200)
I personally feel better since adding some Liothyronine to the Levothyroxine. I followed forum advice to slightly reduce my dose of Levo for a few days prior to adding a small amount of T3. I also improved my B Vitamin level by taking a good B Complex (I use Thorne Basic B). Sorry, I cannot comment on NDT as I’ve no personal experience of this.
I don't think you can just decide like that what you want to try, because each option affects different people differently. It has to be a process of elimination, really.
I started out on T4 only, like most people, and it was horrendous - won't go into the details but after a little research I decided I needed to try T3 added to my T4. That was a little better, but then I learnt about NDT, and though to my niave self that if T4+T3 was good, NDT ought to be better. I wasn't. It was worse than T4 only. So, the next step was T3 only. And that was the one for me! 
If you want more detail on my journey, it's all written out on my profile.
Yes of course, i understand that it’s a process of elimination. It seems that it might become my choice on what I try next. Obviously that might not work, but trying to inform myself and hope they the next treatment might be the one to make me feel better. Its a frustrating long journey!! I’m just trying to understand a bit more about each option and hear some stories. I’ve seen a lot of posts about t4 t3 combo but my endo mentioned only t3 or ndt to me.
He probably meant adding some T3 to your T4. Or did he actually say T3 mono-therapy? That would be rare. Doctors don't usually like that.
I second grey goose, and from a financial pov I would suggest T4/T3 combo first, then perhaps NDT. NDT becomes expensive if say, you end up needing 3 + grains. With a combi you will at least be entitled to free levothyroxine. Which is great if it works.
Umm am I missing something here... My endo told NHS surgery to perscribe me levo through NHS and the pharmacists still makes me pay for it (apparently cheaper tho than private) but still paying... He said would only be free if over 60? ?
levothyroxine prescriptions are free (at any age )if you fill in the medical exemption form with GP . (assuming you have an NHS diagnosis of hypothyroidism and it's an NHS GP prescribing it )
i think it's still called 'myxeodema' on the form rather than hypothyoidism)
This medical exemption certificate also means all your other prescriptions are free . it need renewing every few years , but there is no charge for that .
I'll just point out that we have seen mixed opinions when levothyroxine is prescribed in a block and replace regime.
The person would, obviously, be iatrogenically hypothyroid if they didn't get the levothyroxine. But I have seen it argued the other way.
What is block and replace? And iatrogenically hypothyroid? Sorry twenty questions.
When someone is hyperthyroid, they get given a dose of an anti-thyroid medicine (often carbimazole) to fully suppress their thyroid. They then get a dose of levothyroxine as their source of thyroid hormone.
Sometimes it seems easier to adjust the dose of levothyroxine than the dose of anti-thyroid medicine. Especially if it seems out of control.
Iatrogenic means "done by a doctor" - the person ends up effectively hypothyroid due to the anti-thyroid medicine they are prescribed. (Arguably you could say the same about someone who has had their thyroid removed by surgery or use of radio-active iodine.)
Yes exactly as tattybogle says.
I'm actually due to renew mine and have the medical exemption notice in my hand. If the NHS prescribes, you go to your surgery and request a FP92A application form, fill it in, sign it, then give it back to your doctor to countersign and your surgery sends it off for you.
Assuming you do well on a combo there is therefore a faint possibility that the NHS might take over prescribing the liothyronine and you would then get both free.
But don't quote me on that latter part.
Wow thanks all! No one ever told me that. I am hypothyroid (hashimoto), was diagnosed in europe but my condition is all registered with the nhs & they get letters whenever I see my endo for updates. I got my perscription via nhs app but didn’t know this was an option!!
Out of interest, what treatment works for you?
I'm not at all convinced that private isn't less expensive than the NHS Prescription Charge.
Many levothyroxine tablets cost around one pound for 28 tablets. Even with some uplift, they would be unlikely to be more than £9.35. However, if there are multiple packs (e.g. 100 + 50 + 25), or you get prescribed 56 or 84 days at a time, you might be right.
Is levo it truly that cheap private? I've bought it private for £37 for 28 before. But that was just via a private pharmacy.
That is the sort of price we see from unofficial sources. Certainly shouldn't be that much from a bona fide pharmacy. But it is necessary always to check prices from several pharmacies as, for private prescriptions, the prices do vary.
The pharmacy in question is meant to be bone fide, albeit it allows you to buy a limited range of prescription meds. Clearly into bone fide ripping off😒
No wonder they're so keen to send me promotional 'sales' emails!
Live and learn as they say...
In Spain you can buy 100 levothyroxine for around €4 they sell all the normal strengths.
Wow that's amazing. I've never seen it that cheap elsewhere. Can you just buy it over the counter?
Yes you can buy it at the pharmacy, if they don’t stock the brand you want they order it for you. Although I’ve only purchased it in Mallorca, I’m pretty sure it’s available without prescription anywhere in Spain. We have a home in Mallorca and often go for long periods so it’s easier to purchase it there than have to try for a prescription to cover my stay.
Highly unlikely to ever get NDT on NHS and it’s expensive
Private prescription for T3 enables access to Thybon Henning 20mcg tablets via specialist pharmacies in U.K. at 50-60p per tablet
If on levothyroxine plus T3, typically dose T3 is between 10mcg - 20mcg per day
So that’s about £8-16 per month plus annual consultation fee
Increasing numbers of thyroid patients are getting T3 prescribed on NHS ……but it takes persistence
58,000 prescriptions in England in last year
Typically 6 prescriptions per person per year
openprescribing.net/analyse...
Thanks. Thankfully i am able to afford to go with the best solution, whether that is something the nhs provides or not. I also am originally from a european country- so my endo suggested that if I did t3, that i get it from there.
Just trying to figure out what to do next. I know its a lot of trial and error. Just hoping the next change is the one…
Yep it really amounts to trying and adjusting until something works or is good enough.
I am currently trying T3 only. I started on levo mono-therapy and was very very sick, often bed bound and in excruciating pain and eventually diagnosed with fibromyalgia and was heading towards a full M.E diagnosis (although in my private opinion they are the same thing with different emphasis of symptoms, but I stress that is my opinion)
This was caused initially by being kept on an artificially low dose of levothyroxine, due to stupid and ridiculous beliefs about 'optimal' TSH ranges. Once my TSH dropped just below 5 I was considered 'cured' by every GP I went to and refused a dose increase despite me at times begging with tears. In fact I was forced to hoard my levo tabs and raise it myself, and a tiny improvement, but when the GP found out she deliberately reduced my meds and eventually put me on 75mcg Teva, where I continued to experience declining health and in the end a pretty low mental state.
At that point I found this forum and started raising my levo again, but I don't know if some sort of long term damage had occurred by then, because no matter how high I raised the levo, my T3 level wouldn't budge and even adding adrenal glandulars wouldn't get it to move. I kept crashing on the levo; would raise it sky high and just feel hyper with rubbish level T3.
Acquired nature thyroid NDT and had trouble taking at first (shakes, dizzy spells, palpitations, sudden heat surges, pain) so left it in the cupboard. Read some more, became depressed, stopped taking everything, nearly ended up in hospital. Tried the NT again and started immediately on 3 grains and wallah! It worked.
Started feeling really really good after 3 weeks went on for a couple more months then it became no longer available☹️
Moved back to levo for a bit, then tried Metavive without success, then Erfa, Thyroid S (both these worked ok and are effective meds but gave me terrible insomnia that wouldn't resolve, plus TS gave me skin rashes) ThyroActive, then went to a private GP in despair.
GP put me on Armour which worked ok but again gave me insomnia but not so brutal as E and TS) and I was prepared to just be OK, because I felt in time I would get to a good place on it, because it was very potent. But then I received a dodgy batch that was extremely weak and that put me off, because I can't afford to absorb for mishaps like that (I stress that in the main Armour remains working for many). Doctor convinced no probs at all with the dodgy Armour batch, but I still have another batch that works so I know the difference. (I stress that even with problems I always felt better on NDT, even a weak one, than on mono-levo).
Found NP thyroid and have been on this for months, I sleep ok on it...but started noticing that even at 4 grains hypo symptoms were returning and face still puffy and fingers painful and carpel tunnelly. Plus still couldn't tolerate exercise. I didn't want to be taking 5 or 6 grains as it's just not sustainable for me financially. Tried adding a bit t3 , then a bit t4 without success.
Took a break😓 and stayed on the NP, started taking progesterone cream to see if that would help (excess estrogen has some role in T3 inhibition, no I don't quite know why, it's too early for me) and to my surprise it appears to have sped up my metabolism a bit. Found NP worked bit better but still not well enough. I mean it was ok but just not great.
Read some stuff by the late great Dr Lowe who suggested that people with fibromyalgia need extra doses T3. Tried T3 only and crashed quite badly. Went too fast. Read in STTM book that T3 only requires steady daytime temperature to be effective. Smothered on more cream to get my temperature up and then tried again and bingo, I am now taking tiromel 3 times daily and my puffy face and been-out-on-the-lash-all-night looking eyes disappeared almost overnight, am losing weight for the first time in ages and finding it easier to get up in the morning and not crashing in the evening though tired in afternoon. Concentration is improving. Motivation a tiny bit. I am very cautious that this might work for me, perhaps issues with other meds have been due to me not absorbing properly the T4.
I still feel I am missing a 'get up and go' feeling but a saliva test showed ridiculously low morning cortisol. NHS Doctor refused a prescription of steroids at low dose. Private GP refused any steroid gel but believes in adaptagens. I need to retest adrenals. Then research. This hopefully is the last thing to resolve along with vitamin adjustments.
I believe the progesterone cream has been a part in my ability to take t3 only which is interesting.
Hopefully I can carry on improving and get something of a life back.
Are there any posts or articled you’d recommend for some pros/cons of different medication options mentioned above?
My understanding that using a medication containing T4 (along with T3) is more “stable” as the T4 accumulates in the body and leaves a reserve so less up and downs to manage with T3 only which has a very short life. I believe that the STTM lady says that anyone can get well on T4/T3 combo if they get their numbers right (her view is T4 50% and and T3 at top of range). I know NDT can be very popular and it’s one tablet which contains both so potentially easier to manage as you tend to dose twice a day. In contrast, adding T3 to your T4 may require several T3 doses across the day and timing may be more problematic. All these drugs have different fillers which may explain some individuals success or otherwise but even with NDT you may have to add some T3 to get your numbers right for you.
I personally would try adding some T3 to your T4 and try to optimise your numbers eg T4 50% in range and T3 at top. This is likely to be more cost effective if it works (and more stable with the T4) and is the natural next step for you to try. Then it would be NDT (plus possibly some T3) and then T3 mono.
Do you know if you have any of the gene defects for conversion? That might affect your decision.
Sadly all thyroid meds take time to work and get them optimal.
Good luck.
Well the STTM lady is wrong in her assumption that we all need T4 50% and T3 top of range to feel well. Some of us don't do well with T4 much above a tiny amount.
I'm currently on 50mcg Levo a day and 55mcg T3 and in just this last week, for the first time in 8-9 years, I'm starting to feel a tiny bit better. My FT4 is 7.4 (9-19) my TSH is still 1.85.
Wrong question!You don't choose thyroid medication like you might a cup of coffee!
You take what the body needs.
To discover that, you work through a process of elimination starting with levo.
The others have already expanded on that.
Many people do well on NDT but the T4/T3 ratio is fixed....I didn't use it so cannot comment.
I worked through a long process of trial and error, and elimination, until I eventually discovered that I need high dose T3-only to function
I certainly would not have chosen this protocol because I have to source my own T3 and to self medicate.
Details in my profile
I didn't set out with a preferred choice as you appear to think is the way forward
Though given the way options were presented by your doctor I fully understand why you may think this.
You will find that those of us who are thyroid battle hardened will point out the reality.
It can be a long, bumpy, frustrating, dark and sometimes lonely journey.
There is no quick fix ( think paracetamol/ headache) so patience and determination are imperative.
I'm afraid you need to approach this with eyes wide open to the reality, not with a vision of choosing a little pill that takes your fancy as being the panacea of all ills.
If I sound cynical it's because I understand, and have experienced, the reality
But the good news is that given time there is light at the end of the tunnel.
Your March results suggest your T4/ T3 conversion is impaired
First ensure the supporting butrients are optimal....vit D, vit B12, folate and ferritin
Look at your antibodies...
Your labs are well over range indicating thyroid autoimmune disease...a common cause of hypothyroidism
A gluten free diet will likely help
With those "dots" lined up you may start adding a little T3
Low and slow is the mantra!
T3-only is the last resort... only to be trialed after extensively titrating T4/T3 combos.
Medics don't always understand the factors that cause this to be the only option for a small cohort of thyroid patients
I totally agree that you need to learn as much as you can before embarking on this journey
Lots of info here
thyroiduk.org/if-you-are-hy...
just don't expect to set out with a particular choice of medication as your goal
The fact that the NHS can provide free levo ( and other prescriptions ) for hypothyroid patients gives some indication of the importance to life of healthy thyroid function.
However T3 can be another matter....many of us have to buy our own supply
Madness!
Rant over....and best of luck!
Don't choose T3 only as a start point. It's hard to use T3 only for many reasons and should be the last resort. Try adding some T3 to a slightly lowered dose of Levo and see how it feels. Start adding just 5mcg a day (quarter tablet) and let it settle in for 2 weeks before trying another quarter tablet if you feel OK. And so on. It takes a long time. And a lot of data collection. The main problem in the UK is the endos. are unlikely to prescribe enough T3. They seem to think 5 or 10mcg a day is all any of us need. Wrong! Some of us need a lot more. So we end up buying it. But get what you can out of the NHS on the way.
I started adding T3 to my Levo in 2020 I think it was and cut out Levo completely last year. I feel very, very much better on Tiromel.
Which private test company would you recommend? Concerned about T4 to T3 conversion.
You are going on a journey You can only take one supplement. Which one would that be? 
Who would like better Thyroid treatments available or at least a choice?
GP tells me to choose which symptoms to live with
Can I choose which Covid booster to have and which should I choose?
