Hello šš¼
So I had Monitor my Health an interim test after 6 weeks on 75mcg levo and 10mcg lio.
I know itās still early days but I feel pants and wanted to just see what they were. I will do a Medichecks one in 4 weeks time. I think it explains things for the moment though. Does anyone agree/disagree?
Edit: out of interest does anyone know how the trial works? Am I expected to go the whole 4 months on this dose or can I request an increase before the end of the trial?
Hi - Iām on an NHS trial too and I had an NHS blood test after 6 weeks and then emailed the endo dept to ask for an increase in fT4. I had to phone up for an email address, mind. I got the increase, so maybe you can share your results with your endo the same way? Looks like more levo would be helpful, doesnāt it?
Thanks Lotika. I have done that before so yes I think Iāll follow that advice and do it again. I have a hospital email but it always gets to him so š¤š»
I don't know how the trials are supposed to work , but if i had evidence of TSH still being over 2 while on T4+T3.... i'd be showing it to the Endo and asking for 'more please'. And for the trial length to be extended until they got decent blood results.
The usual reason for caution about using TSH levels as evidence is that they can take an extra long time to come up after being supressed for a long time, but this doesn't seem to apply here, . I think at 'normal' TSH levels, TSH should usually be pretty representative of what's occurring within 6-8 weeks.
I didnāt realise that about the tsh, tattybogle. Thanks.
As Lotika said, Iām going to email him. Iām down as a poor converter so I donāt know whether to ask for t3 or both? I have struggled on the t3 although every day is getting better.
Thanks for your input. Appreciate it x.
to raise T3 or T4 ?... to be honest , i don't have enough experience to know , but fT4 does look pretty low so i'd probably pick that.I would say one thing tho , since you said it's getting better every day.....when i've made small 12.5 mcg increases in Levo alone it's taken more like 8 + weeks to really feel as though the effects of the new dose have settled .. i do think some improvements are a 'slow build' .. so don't be too quick to rock the boat.
I'd love to know how you get a trial of T3 on the NHS, I have conversion problems ( proved by blood test results) and the DIO2 gene mutation . I couldn't persuade my endo to give me a trial of T3 ( on cost grounds) . He advised I buy it off the internet ( which I did ) and he completely agrees it's what I need.
He still won't give it to me, and despite him writing to my GP numerous times , they won't prescribe it because the "don't know enough about it"!!!! and because I initiated it myself.
I've been on this merry-go-round for around 18 months now.
It's driving me mad !! 
I'm glad some of you out there are getting the help you need.
Hi knitwitty
If I could be specific about it I honestly would. Basically I had some bloods done, got an increase of levo, had some bloods done and my t3 didnāt increase but my tsh went down. I asked for some t3 and he agreed to go to the trust. Two weeks later I had a script.
Whether or not this has worked.... after years of dealing with unhelpful medical professionals I talk about myself as a third person. I do not elaborate on symptoms unless asked and then only give 3. My main is joint pain. I never get emotional (hard because sometimes you know how frustrating it all is!) and I put on my best headmistress attitude and I ask. I have to say this has worked for me more times than it hasnāt. I also donāt bother with the gp at all. I keep everything as brief as possible.
Iām sorry you are having such a struggle and I canāt believe your doctor is so desperate to keep his costs down he is prepared for you to self source!! I find that outrageous for someone in his position to condone you taking drugs off the internet. We do when we have to and I would too but the point is we SHOULDNāT have to. Admitting he doesnāt know enough about it? It beggars belief that they donāt keep themselves educated. Not to mention scary!!
Can you not ask for a referral to a different endo? x
Hi Yeswithasmile
This endo is very nice and seems to be very clued up on T3 and NDT therapies for thyroid problems, the embargo has been put out by the CCG so I fear any other endo in the area would refuse to prescribe T3 too.
There are some people on T3 in my CCG but new prescriptions seem to be as rare as hens teeth !
The GP surgery quote the following excuses in rotation,
1. You've self prescribed ( with the Endo's encouragement) so we can't give it to you.
2. We don't have anyone else on this medication so we don't have any experience of it and couldn't possibly prescribe it ( Well in that case do your job and read up on it! )
3. It's not given out in Primary care so you have to get it from the Endo.
4. Make a complaint to PALS if the Endo won't prescribe it. ( PALS ignored me until my MP contacted them on my behalf , that just prompted another letter to the GP from the Endo, and so it goes on , much to my frustration ).
5. The CCG guidelines say it is a RED medication and can only be prescribed by an Endo, but the guidelines also say that someone on this medication can obtain it via their GP if they are stable on it, the GP is refusing to give it to me because I initiated it myself.
It's b****y exhausting, and completely wrong on so many levels.
I'm delighted that you are having more success than me at least.
I am shocked to actually read that. I understood that people really struggle but to read your reply is simply shocking. What area of the country are you in??
I considered my original reply to you and thought, really, I talk down to them. I have just gone so far past expecting any help from any of them that I think I give off an air of contempt. Itās not intentional. I just feel that they put themselves on a pedestal and itās a job. They used to care. My husband has Parkinsonās and his treatment is no better. We went privately initially and the only difference there was the surroundings š. I wasnāt impressed with this chap initially to be honest. But on the last couple of appts he started talking to me like I was on his level (unusual). I couldnāt believe it when he agreed about the t3 as I had just thought it would be a negative. Iām emailing him now though so we will see if my luck continues!
I wish you lots of luck with your struggle and really hope things change very soon for you and everyone x.
Just going back to your original post , now that I've had my moan.
When I first started on T3 I only took a very small dose ( a quarter of a tablet 6.25mcg ) I took this first thing in the morning before I got up ( having taken my levo at night ( 75mcg) ). I didn't eat or drink for at least an hour.
After about 4 weeks of this I introduced another quarter of a tablet at night with my levo . I thought that taking T3 at night might keep me awake at night but I started having better sleep than I'd had in years.
Again I stayed on this dose for about 4 weeks before I introduced a further quarter of a tablet, but quite soon I felt over medicated , so did blood test and found that my T3 was slightly over the top of the range, so I dropped back to 2 doses .
it was only after being on this same dose for 2-3 months that I started to feel something resembling "normal".
I came to the conclusion ( rightly or wrongly) that having been deprived of adequate T3 for so long , that it took a while before my body was able to utilise it properly and for it to be absorbed by the cells that needed it.
I started low and slow primarily because I was going it alone and also because I wanted to ensure my best chance of success.
Good luck. I hope you're feeling much better very soon.
Thank you knitwitty. Detailing your experience is very kind. I think youāre right. Slow is better. After posting here last week I have started splitting my dose into 2 x 2.5mcg. One morning and one night and 5mcg in the middle. Itās working so much better. Interesting how long it took you to build up. If my dose is increased I will be a little daunted I admit so to read how you have done it is really helpful thank you so much.
I have been guided on needing to focus on vits etc which I am doing and have been for a few months now so I didnāt know to start with whether it was that or the fact that like you for years Iāve obviously been running on empty.
Thank you for you help. x.
You're very welcome, everyone on this site is really helpful , I would have been in a terrible state without people's unstinting advice and kindness.
As mentioned by Radd below , it's a good idea to optimise essential vitamins and minerals as deficiencies can also present with hypothyroid type symptoms and also having them optimal improves your chances of being able to utilise levo and T3 when taking it theraputically.
I did make sure that my Ferritin, Folate , Vitamin B12 and Vitamin D ( which was very low) were optimal before I started on the T3.
I also read Paul Robinson's books ( available on Amazon) before I started on T3 too, I was really worried about taking matters into my own hands , but now I am really glad I did.
I'm sorry but I can't remember the names of them off the top of my head but one was Blue and one was an Orange/yellow colour, they were really informative and reassuring. Paul Robinson is a man who had to take matters into his own hands regarding his thyroid treatment after being ignored by doctors for years, he details all the different treatment options for hypothyroidism and their pros and cons.
Again , all the best for a swift and beneficial improvement in the relief of your symptoms.
Which CCG area are you in?
If nhs endocrinologist says you have clinical need you should be prescribed on nhs. Initially via endocrinologist and hospital pharmacy for first 3-6 months
Hi SlowDragon,I am in Merseyside and I have used every argument going to try and get this on the NHS, but the Endo says that it would bankrupt the CCG if he prescribed it to everyone who needs it. He has written 4x to my GP now and they are refusing for the reasons I listed above in response to Yeswithasmile.
I have shown him the list showing that people can have /are already getting it on prescription in Merseyside but he keeps saying his hands are tied.
T3 price is/has dropped significantly
Down now to Ā£118 per 28 tablets for NHS 20mcg tablets
Max price T3 NHS was Ā£268 per 28 tablets.....due to deliberate and systematic exploitation of loopholes in generic medicines pricing
gov.uk/cma-cases/pharmaceut...
Thybon Henning 20mcg tablets are Ā£1 each on private prescription from specialist pharmacies in U.K.
Hi SlowDragon , Thanks for the information, I think the price was nearer Ā£350 when I first asked for it to be prescribed, I know it has dropped significantly since then but I am still being faced with a brick wall at the moment.
I have another appointment with the Endo in June , I will raise the situation again and our GP Practise had merged with a larger one so maybe when we are allowed to see GP's again I will raise the ridiculous situation with them , and hopefully get a different response. Though if past experience is anything to go by I'd better not hold my breath for a good outcome.
I have heard reports that some areas of the country are now prescribing T3 on the NHS ( I think Norfolk was mentioned a while back, and judging from the people asking about T3 on here , some are getting a trial of it) so possibly yet another example of a postcode lottery regarding NHS treatment.
If an NHS endocrinologist says you have clinical need for T3 you should be prescribed ...initially via endocrinologist/hospital pharmacy.
Then endocrinologist writes to GP to formally request they take over care and cost of prescription
But yes...it remains a post code lottery
Iām in Merseyside and get t3 prescribed by the GP. She said she gets an email every month from the CCG telling her that this is an expensive medication, but she just ignores it. It was initiated by the endocrinologist so it was done according to the NHS guidelines.
Ywas,
Your results show there is room for a dose raise but as you have experienced large inner heat after taking T3, it would be prudent to only raise T4 at this moment.
As said before T3 should be better tolerated with iron/nutrient deficiencies addressed and time. Adding a little T4 will increase T3 levels anyway by encouragement of conversion.
Hi Radd.
So pleased to read your reply. Thank you.
Yes I took onboard those comments and did wonder about increasing t3. It isnāt something I would be looking forward to. That said your recommendation of splitting the dose has helped a great deal. Especially at night. Not waking with heat until 4am. That is brilliant as I have suffered with that for over 15 years. Not quite to the extent of the last month I hasten to add though! But I thank you for your experience and knowledge on that š
I am down as a poor converter so I wonder if the t4 only would make much difference? I am emailing the endo and will see what he is prepared to do and if he prescribes both I will ask for an extension of the 4 months as I will be doing things very slowly as you say. I know youāre right šš»
Thanks again for the reply.
Many of us on levothyroxine plus T3 need BOTH Ft4 and Ft3 at reasonable levels (typically Ft4 at least 50-60% through range
Only increase levothyroxine or T3...never both
At moment, you more likely need small increase in levothyroxine.....perhaps 75mcg and 100mcg alternate days initially..
Essential all four vitamins are optimal
Always same brand of levothyroxine and always same brand T3
Strictly gluten free diet and/ or dairy free diet often helps or is essential
Hi Yeswithasmile
Your experience is such a travesty. I think a lot of us are intrigued as to which CCG is meeting out such appalling treatment on you. Do tell us.
Iām less than a year into my diagnosis, but already received poor treatment being started and left on a ridiculously low dose of Levothyroxine until on my knees. So many ignorant clinicians- shocking systemic failure across the NHS. The knock on effects of not identifying and properly treating hypothyroidism will be costing the NHS tens of millions.
I nearly had operations on my hands for carpal tunnel. However, the clinicians didnāt see the results they expected on nerve conduction tests so sent me for the nerve conduction tests again. I realised they were unsure - keen, but unsure - which made me nervous of putting myself in their hands and I decided to withdraw. So glad I did - symptoms eventually cleared. I have read symptoms like this can be down to hypothyroidism (Iāve had plantar fasciitis too - also cleared). Iām pretty sure not a single person I saw in regard to this knew though!
Letās hope they do these trails and eventually get back to patient well-being at the centre of treatment rather than ranges on charts they have scant understanding of in any case.
Hi ,
Your experience is such a travesty. I think a lot of us are intrigued as to which CCG is meeting out such appalling treatment on you. Do tell us.
Iām less than a year into my diagnosis, but already received poor treatment being started and left on a ridiculously low dose of Levothyroxine until on my knees. So many ignorant clinicians- shocking systemic failure across the NHS. The knock on effects of not identifying and properly treating hypothyroidism will be costing the NHS tens of millions.
I nearly had operations on my hands for carpal tunnel. However, the clinicians didnāt see the results they expected on nerve conduction tests so sent me for the nerve conduction tests again. I realised they were unsure - keen, but unsure - which made me nervous of putting myself in their hands and I decided to withdraw. So glad I did - symptoms eventually cleared. I have read symptoms like this can be down to hypothyroidism (Iāve had plantar fasciitis too - also cleared). Iām pretty sure not a single person I saw in regard to this knew though!
Letās hope they do these trails and eventually get back to patient well-being at the centre of treatment rather than ranges on charts they have scant understanding of in any case.
I'm not sure if you were responding to me, I live in the Merseyside area ( I keep getting told that the Pan Mersey guidelines prohibit prescribing T3 going forward) my friend in Lancashire is also experiencing exactly the same problems getting T3 on the NHS. The ignorance or sheer bloody mindedness, I'm not sure which, of some of the Endo's seems to know no bounds !!
Just had a look at the Pan Mersey prescribing guidelines and found:
Liothyronine sodium tablets
View adult BNF View SPC online View childrens BNF Formulary
Red
20 micrograms
5 micrograms (unlicensed)
Existing stable patients in primary care may continue to be prescribed liothyronine by the GP where they are satisfied the patient is benefiting specifically from the use of liothyronine.
AND
Red
Primary care prescribing of these medicines is NOT recommended. These treatments should be initiated by specialists only; ongoing prescribing is retained within secondary care.
formulary.panmerseyapc.nhs....
They are wrong, both 5 and 10 microgram tablets are licensed in the UK. If this is the guideline document being used, it does not ban liothyronine (T3) - but requires specialist initiation.
(I'd also complain that the document doesn't have an introduction and I could not see any explanation of its scope and applicability. Which rather undermines its status.
14/88/04āDesiccated Thyroid extracts black statement
GPs are sometimes being asked to prescribe desiccated thyroid which is an unlicensed product. There is no evidence of benefit over licensed thyroid products so FGSG recommended this should be a black drug and majority of consultee comments agreed that if an individual consultant felt there was a role for it rarely in individual patients prescribing should remain with the consultant. The committee approved the black statement.
AND
Black
Not recommended for use. Deviation from the policy may be considered on an individual basis where exceptional circumstances exist.
panmerseyapc.nhs.uk/media/1...
(The above, obviously, is about desiccated thyroid rather than liothyronine. But using the word "black" as in shorthand for "bad", "deprecated", and all things negative seems very questionable language.)
I'd note that the Red and Black statuses do not appear to present an absolute bar - just a barrier to jump.
Hi Helvella
I have quoted this document to the GP and they still refuse to take responsibility for prescribing. The excuse last time I raised it was because the doctor prescribing has to take ultimate responsibility if anything goes wrong they would be liable !! subsequently they are refusing on those grounds now. They also said that because I initiated it myself ( under approval of the endo) they do not have to prescribe it.
The whole thing stinks !!
But thanks for your input, I think it may have been you who pointed me in the direction of that information a while back.
I was trying to reply to yeswithasmile - I keep getting that wrong Iāll copy and repast - but yours is yet another example of appalling treatment. So many of us š¢
Hi Charlie Farley
I do think you got it right and were actually replying to knitwitty.
In any case I am sorry to read of your struggles and really hope you can get what you need very soon.
Itās a good job you are on the ball. Needless operations are easy to accept if youāre told they will help. We soon learn to be our own advocate. Such a shame that we need to be.
š¤š» You are feeling better soon x.
Very interested to read your message regarding your trial of T3 on the NHS. I am also just completing a 6 week trial of T3 but I had to pay for this privately. I go for my first blood test today which I am also having to pay for privately. Interestingly my private Endo is a colleague of the NHS Endo who refused point blank telling me that taking T3 with T4 doesnāt work. Not sure how or why he would or could say this since he has never requested a T3 test for me! When I asked my GP about a prescription to try T3 his response was āLetās not even go thereā. Since then I have been reading lots of info around the subject, hence my reason for going down the private route. I have to admit that so far I certainly have not felt anything like well with my trial of T3 but I believe I am presently very under medicated with a dosage. of 10mcg of T3 and 50mcg of T4 after my total thyroidectomy for uncontrollable hyperthyroidism.
I now await my blood test results with baited breath and which I will post on here when I receive them.
Hi Fred Jones
No I can relate to not feeling well too but I expect you are under medicated as it is the start of your journey with T3 like me too.
I do have the trial but I pay for the bloods and send them to my endo. I feel fortunate to consider this a small price to pay for legitimate sourcing of the t3 to be honest.
This post has certainly been enlightening to read how hard it is for people to get this medication. It strikes me that the doctors personal interpretation and opinion is what is being implemented in these cases and not their medical opinion. I find they are not interested in quality of life issues maybe thatās because they are never held accountable for quality of life issues as they are subjective and very hard to prove in a court of law?
I will be very interested to see your bloods when you get them. Itās all a learning curve and it all adds to our knowledge so please do post them.
Hope you feel better very soon x
4 weeks on T3
T3 Trial Test results Advice Please
Blood Results for first 6 weeks on Liothyronine
I am under medicated? First 6 weeks test results.
