Hello everyone, feeling like I want to scream into a pillow this morning!
I had my private consultation yesterday and not only wouldn’t he prescribe me any T3, he is also going to write to my GP to reduce my Levo prescription!! So it was all a bit of a disaster really.
I showed him my Blue Horizon Thyroid Gold test results and I said it seems that my T3 is too low and my T4 is too high within the range, which points to me not converting well, and I would like to trial some Liothyronine please.
My heart sank when he told me T3 levels weren’t important and it was all about the TSH figure, which in my case was too low in his opinion at 0.311 (range 0.27 - 4.20), and when the TSH is below 1 it is bad for heart health long term. Therefore we need to bring this up by reducing my Levo from 75mcg per day to 75mcg every other day with 50mcg in between.
He told me hypothyroidism did not cause stomach issues by lowering stomach acid and that if I had low stomach acid then I wouldn’t have acid reflux, because that’s only when you have excess acid, (exactly like my GP had told me previously). I did at this point say that I had read that you can in fact get acid reflux from low stomach acid because it prevents the sphincter muscle from closing as it should, and what acid there is rises up, but this was glossed over and I thought to myself it wasn’t why I was there anyway….. my aim was to get some T3.
He took my pulse , blood pressure and listened to my heart. (He made no comment and I’m now wishing I had asked for his results and what he was looking for. ) He asked me about my symptoms which I told him were weight gain, fatigue and stomach discomfort.
He didn’t feel my symptoms were severe nor many and although he said he had prescribed T3 in the past, I wasn’t suitable for it.
I pleaded for a trial of just 5mcg per day and he said that Liothyronine was bad for the heart and it would give me palpitations. I said I would split 5mcg into two per day but he would not budge.
I said I was really disappointed, and his reply was that he couldn’t prescribe medication for me that he felt would be detrimental to my health.
You’re probably thinking I should have stood up for myself and said No, I don’t want my Levo reduced, but it was so very difficult in the moment when he was informing me of his very entrenched views about heart problems etc.
I just made a bad choice of Endo.
But this is now where I’m at. I would really appreciate your thoughts as to where I go from here to get some T3. Especially as my Levo prescription is to be reduced!!
If anyone can recommend an Endo that is happy to prescribe T3 for reasons of being a poor converter, please please could you send me a personal message.
I’m happy to drive a couple of hours to see someone that’s more forward thinking re T3, Cambridge, Suffolk, Essex, Norfolk, or even if their location is far away from me, a consultation maybe could be done by phone ?
I would prefer to have it prescribed but…… if you get your T3 without a prescription, please could you private message me with where you get it from, and which brand it is.
Thankyou so much for your help and support 🙏
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Its no consolation to say you found a complete booby, was he an Endo from the Thyroid UK list? Another TSH obsessed know nothing. Just my two penneth but I feel you could be throwing away money if you go down the private route again.
Self sourcing might be an alternative. I'm also not sure your GP is obliged to listen to a private Endo regarding your Levo dosage. If you strongly dispute what he said then make your GP aware of this. Dont accept your Levo being reduced.
Sometimes when I'm struggling with a decision where all choices can look bad I draw up a written list of pros and cons, its there in bullet form, black and white. In your case I would say
Cons of Private Endo and T3 prescribing.
1. Finding the right Endo who is T3 friendly, not always easy.
2. That same Endo agreeing you even need T3, its not a given.
3. On going cost of consultations, blood tests, and prescriptions. You're extremely unlikely to get T3 on NHS unless you choose an Endo who does both private and NHS and would transfer you from private to a referral from NHS and then see you as an NHS patient. This would obviously take time, NHS Endo waiting times are long.
4. You will only be prescribed a set amount of T3, which might not be enough for you, even if your Endo will be pleased with your results, you might need more T3 than they are prepared to prescribe.
5. GP surgeries can be "difficult" about taking over the cost and responsibility for T3. We've had members, happy on T3 for years who are having their prescriptions cut or ceased altogether. Or GP surgeries who are very reluctant to initiate prescribing even though an NHS Endo has authorised T3. T3 is still a relatively expensive drug and many doctors dont see a need for it. Obviously if you are getting it privately then this isnt an issue. But something to be aware of if you ever decide to try for T3 on NHS.
Pros of Private Endo and T3 prescribing
1. You will be under the care of a professional, which can be comforting and offers security. You should have a choice of T3 brands, depending on dosage so can trial and error to see which one suits you best. Plus you can shop around different pharmacies to see which one is cost effective. You can send a prescription so are not confined to your local area. Many pharmacies can send medication via post or courier.
2. Hopefully any issues or health concerns can be addressed and you will be monitored regularly by an Endo. If you self source T3 you are left to get on with it.
3. If prescribed you can get your T3 openly and are not at the mercy of using potentially dodgy websites or scammers. Although there are legitimate sources of T3 on the net they are invariably from websites outside the UK and people often feel uneasy. Plus there can be supply issues, delivery delays, things get lost in the post.
One thing that could be worth a try is ask on the forum for a reputable T3 source, please do check with admins to see if any issues have been reported, we unfortunately do get scammers on the forum, despite HU best efforts. You could then try it and see if it helps, there are lots of members who self source and are very experienced with T3 dosing protocols.
Then if you find it helps you could then consider going down the private Endo route again. Or even NHS. Its a cost effective way of seeing if T3 is helpful first, before committing yourself to considerable outlay.
Hi Sparklingsunshine, Thankyou so much for your advice and for making the pros and cons list for me …. So thoughtful.
Sadly, yes, this Endo was on the Thyroid U.K.’s Recommended List 😞. I will let them know of my experience with him.
The Endo also worked at my local NHS hospital and my GP knew of him and holds him in high regard, so I’m sure she will take notice of him. She had to send him a referral letter before I could book an appointment.
I’ll sit and have a think on the pros and cons later this evening. Thanks once again Sparklingsunshine!
Yes - I have been there and why I now self medicate and have my life back and am much improved from where the NHS would have me.
I'm sorry - when not well - it is hard enough just sitting there - listening to someone who has no intention of giving constructive advice nor helping you back to your previous health and well being after surgery.
You have results from just before the hemi-thyroidectomy and all you want is to be well again and get your T3 / T4 back to where they were - which is not unreasonable - is it :
Prior to surgery your T3 was at 5.10 and around 54% - now your T3 is around 30% :
Once on T4 only thyroid hormone replacement - we do need to maintain a higher T4 reading than pre - surgery - so there's little point comparing this reading pre an post surgery.
Generally once on T4 we need the T4 up in the top quadrant in order to give us a reasonable T3 tracking slightly behind at around a 60/70% -
Or put another way - the accepted conversion ratio when on T4 only - once the T4 is in the top quadrant - is said to be - 1/ 3.50- 4.50 T3/T4 - with most people feeling at their best when they come in this ratio at 4 or under and currently your conversion ratio is coming in at 4.90.
Was this endo on the Thyroid UK patient to patient recommended list of NHS/private doctors and specialists ? If so please let admin@thyroiduk.org know so he can be removed from the list we recommend to forum readers.
It may help to know how supportive your area is to prescribing T3 - as it has become something of a post code lottery -
if you go into openprescribing.net and then analyse you can see by surgery and CCG/IBC area - how things are in your neck of the woods.
Just enter Liothyronine as the T3 drug and if thinking Desiccated Thyroid - enter Armour - as the drug as this is the leading most expensive brand that the NHS prescribes.
No thyroid hormone replacement works optimally until your core strength vitamins and minerals are optimal -
Considering you have ' lost ' 50% your thyroid - you will likely need full thyroid hormone replacement and will need to replace that little bit of T3 that your thyroid once supported you with in order to kick start your metabolism.
Hey pennyannie! Thankyou so much for replying and for your advice.
It’s encouraging to know that you are self medicating and doing well now . Could you send me a personal message please with where you get your medication from?
Given my figures, do you think I will only need a little bit of T3 to add to my Levo? “Prior to surgery your T3 was at 5.10 and around 54% - now your T3 is around 30%””with most people feeling at their best when they come in this ratio at 4 or under and currently your conversion ratio is coming in at 4.90.”
I had a look at the link, open prescribing, and my east England area is about middleing with the south east doing best.
Unfortunately yes, this Endo I went to see is actually on the ThyroidUk recommended List. I will let them know of my experience.
Oh what a shame he was on the list - and has taken to becoming a brick wall !!
I actually do no take T3 synthetic thyroid hormone -
A fully functioning working thyroid would be supporting you on a daily basis with trace elements of T1. T2 and calcitonin + a measure of T3 at around 10 mcg + a measure of T4 at around 100 mcg - with T3 known to be around 4 times more powerful than T4.
So having lost half your thyroid - I don't think it means you need half this perceived value as your dose - it is known that once you start T4 you are not topping up just that lost as the body tends to become more dependant on that being prescribed with one's own thyroid hormone production reducing.
So it's a question of balancing the T3 and T4 to a level that gives you back your wellness and ' your you ' - it probably will not be much - and maybe around 10 mcg - I can't say but most people add in small 5 mcg doses and take 2 possibly 3 doses a day - morning and afternoon - whilst others able to get by on just 1 dose.
I take Natural Desiccated thyroid which is derived from pig thyroids, dried and ground down into tablets referred to as grains - with each grain containing all the same known hormones as that of the human thyroid gland - listed above.
NDT is the original and successfully used treatment for hypothyroidism for over 100 years and on the back of which Big Parma launched their synthetic treatment options in around the 1960's and then went about gaining market share.
Just checked the open prescribing page again. My practice along with many others in my area (Pearce) is proud to report no T3 prescriptions at all (again).
Savings - no further improvement necessary!!
In fact a quick look in other areas there is pretty much a downward trend and very few bucking the trend.
WOW something to be very proud of - not helping your patients NHS.
So sorry to hear about your Endo disaster but all is not lost. When I realised I had poor conversion and needed T3 I approached Roseway labs. I had a phone consultation with their prescribing pharmacist. At very reasonable cost I now receive Thybon Henning T3 20 mcg tablets which I split into 10mcg once a day dose. This together with my 100mcg T4 has put both my frees into the high end of their ranges and I feel better than when I was on T4 only. Needless to say my TSH is suppressed but we all know this is irrelevant!
Just to say seconded, I use Roseway for Low Dose Naltrexone and they are very good indeed. I was going to suggest them as an alternative to a more expensive private Endo but you beat me to it 😁
Roseway are a compounding pharmacy in London, all accredited. They offer a pharmacist prescribing service once a week on Wednesday I think. Obviously a telephone consultation. As I said I dont use them for thyroid but do know they can prescribe T3 as well as NDT.
You can pre book the appointment and pay for the consultation. Which includes the cost of a private prescription, if applicable. For thyroid they normally ask you to fill in a medical questionnaire, some proof of diagnosis and a recent thyroid blood test. Which they need before the consultation begins.
If you both agree on trialling T3 then she can prescribe and the prescription is sent to Roseway to dispense. You will need to pay for that before it is prepared. I'm afraid I dont know about cost but it is very reasonable compared with private Endo. Then Roseway send out your meds via first class tracked post. And presumably you would need to book in with the prescriber for a progress report and any changes to dosage.
I know we have a few members using Roseway. I'm sorry you had such an unfruitful Endo consult, such a let down, especially when you did your research. However you do have other options like using another Endo, Roseway or self sourcing. Good luck.
Thankyou so much for the information Sparklingsunshine! So helpful! I will contact Roseway
So as there is a telephone consultation with the pharmacist at Roseway, is it still a case of persuading them that I do actually need to trial T3 to get a prescription? My honest symptoms are not terrible compared with others but I would like my thyroid levels to be where they pose no risk to my heart and bone health in the long term. (The Endo didn’t think my symptoms were even related to my thyroid!) He said re my metabolism: well everyone has to watch what they eat as they get older!
She seems very open minded, maybe start a new post asking for other members experience of using Roseway for T3. I had no issues getting on LDN for Fibro. If your T3 levels are low in range then I cant forsee an issue.
Its low FT3 that causes hypo symptoms and if that prat of an Endo gets your GP to lower your prescription for Levo then its likely your FT3 will drop further.
I will give Roseway a call and go from there. Do Roseway or the pharmacist write to your gp to tell them that they have prescribed for you, or is it up to you whether you enlighten them?
You have a choice, I chose not to let my GP know about the LDN, the NHS refused to prescribe it so I feel no obligation to inform them. Its entirely your decision. The only thing I would say is that if you have NHS thyroid tests and are taking T3 you are likely to get some odd results, like suppressed FT3. Which might raise your GP's eyebrows.
Sorry for your experience. I'd feel same too having paid private and from the recommended list too. I think Roseway labs would be a good alternative. I didn't even realise they gave this service. This would give you peace of mind knowing you would be rightly prescribed and all at a very reasonable cost too.
Roseway Labs gets mentioned a lot. If you do decide on another endocrinologist I suggest approaching their secretary on whether they prescribe T3 and under what circumstances.
Alternatively my sympathies are with you. So many of us have been in a similar situation, including myself.
Cambridgeshire were not allowing T3 at one time, despite the ex-BTA president working there who wanted some patients to have it! It looks they now allow it from a consultant
Norfolk is good now - we won our campaign here! Though there's one NHS endo in Norwich that everyone warns against (he's also the only private one). Message me if you want to know more.
utter bollocks. Ring Roseway Labs it’s £50 for a phone consultation and they will totally understand your situation. My Liothyronine costs £60 for 3 months supply. If you are symptomatic you should definitely be heard by your GP. Don’t agree to a dose reduction this decision to be taken with your input. ENT at my local hospital totally agree with the stomach/T3 thing your Endo is out of date. 🌱
Yes, I soon realised that the Endo was a dinosaur and that the consultation was going to be a total waste of time (and money).
Re my Levo dose reduction, I was in despair initially but now I’m wondering if I would need to do that anyway if I begin taking T3? (My T3 is on the low side in the range at 4.2 and my T4 is on the high side of the range at 20.50 and my TSH is 0.311).
Yeah that’s a tricky one, ask the prescriber…. It maybe a tiny 5mcg T3 sorts you out. I started on their compounded capsules at 5mcg I’ve now switched to thybon hemming 20s and take 15 mcg (20 split into quarters with a quarter left over) they may suggest NDT might suit you better.
How is your ferritin?
The presciber is generally more concerned about symptoms than blood test results, I was way over range last summer and she was super relaxed and reassured me that ‘normal’ isn’t normal for everyone. Depends if you are symptomatic. I’m back in range thankfully and just working back up from being hypo ago🤗
My honest symptoms are minimal compared to what others experience, being weight gain and stomach issues (which is most probably low stomach acid), started 2 weeks after my hemithyroidectomy op. So I’m not feeling many hypo symptoms, but in order to keep it that way, and improve the two symptoms that I do have, i would like my T3 and T4 levels to be at an optimal percentage, which apparently they are not currently. A few members on this amazing forum have advised I am a poor converter. So I was hoping that a small amount of T3 would help
When I saw the endo I said I suffered fatigue as well. Would you advise exaggerating my symptoms to the Roseway pharmacist ?
I feel a bit scared of NDT ….. for instance, how do you transition from taking T4 to taking NDT?
My ferritin level was 52.6 three weeks ago but now I am increasing the amount of iron rich foods I eat along with vitamin C to try and increase that figure. All my other iron levels including transferrin saturation were good. Folate was 14 and so am now taking Iggenus B vitamin supplement to bring that up
(B12 and vitamin D both at top of the range. )
I would really appreciate your thoughts on the above if you have a minute.
I wouldn’t exaggerate but don’t underplay anything, they are so kind and supportive, we get used to feeling ‘a bit shit’ as the new normal. Consider, sleep, pain, cognition, digestion, anxiety, depression and fatigue and decide what symptoms you have 🤗
Highly recommend Three Arrows Simply Heme. Ferritin over 100 helped me convert better. It’s from the US doesn’t give you constipation and absorption isn’t affected by other foods etc. take every day for 1 bottle then take a couple of times a week.
Thankyou for your advice Regenallotment. Fingers crossed for Wednesday when I have my Roseway pharmacist consultation ! The Three Arrows simply Heme does sound like the best iron supplement going! It has lots of recommendations, well done on getting your Ferritin level over 100! Hope I can too!
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