I am lucky because my GP practice is in a different borough so I'm safe for now. But who knows for how much longer?
My endo told me this earlier this week.
Told by ENDO that my borough has been told not ... - Thyroid UK
Told by ENDO that my borough has been told not to prescribe T3 anymore because of cost.....
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40 Replies
•
I looked the price of t3 up today on the nhs website. It's currently £198.62 for 28 tablets. I am prescribed it but dont take it. I am going to use the price to try and convince my doctor to prescribe my ndt instead.
Does anyone know how much the practice would be charged if the doc prescribed 3 grains a day for me?
G x
Mum, would he be willing to give you a prescription if you ordered it yourself. That price is ridiculous when it is should only cost about ten dollars a month.
Hi Heloise. I've just heard that my region is stopping T3 due to cost too, so am very interested in what you said about ten dollars a month. I imagine you're in the States and won't know about whether I can order it at that price in the UK so I'll put out a fresh post asking. But I'd be interested in any information you have. It might be useful to tell the health authority, because there's no way they should be paying that amount for it if it's so much cheaper elsewhere.
Hi joesmum.
I am really interested in this as my GP told me the same thing yesterday that my region is asking her not to prescribe T3 anymore due to cost. (I had no idea it was so expensive so it was quite a shock).
She was going to a meeting to try and fight it. The endo that initially prescribed it for me is in another region so she is going to refer me back to him and hope that I can get it through him if she is forced to stop prescribing. It sounded as if the local endos have been stopped prescribing it here too.
Do you mind me asking what region you are in? Maybe you could private message me if you prefer not to put it on the forum.
All best wishes to you, D
• in reply toDee1
Hello Dee1,
My local health trust have withdrawn my T3. My private endo who prescribes is in a different health trust so I have moved over to his national health clinics. Not ideal as 130 mile round trip for endo visits, blood tests, & collecting meds that are only dispensed through hospital pharmacy. ... but better than self medicating or going without.
F
I get my T3 online. £3.99 for 100 x 25 mcg tablets which isn't bad.
could you pm me the info where you get it from, that is cheaper than i can buy it in france, thanks in advance
• in reply toNikki28
Can you pm me that too? Thanks!
Hi, could you please PM me information on where to buy T3 would appreciate help many thanks.
I would never take the NHS T3 as it has little T3 in it, in my opinion. I don't have a gland and T3 is vitally important to my health. I find the Mexican Cynomel is the best and it's really not expensive.
Do you have any evidence for that claim about T3 content?
Have you sent a Yellow Card report in to the MHRA?
(Not for one moment am I disputing your feelings about the two products. Or your experiences with them. But making a specific claim about content is another matter.)
Hi gismo333
I have been trying to contact you for last few months but your e-mail keeps bouncing back is it still same. One of the reasons for contact was the not being able to get t3 from you know where. ( we are not allowed to mention site) On nhs t3 very poorly and very hypo as back at treliske endo. Actually have appointment tomorrow. Recently joined forum to get help and recognised you. Last spoke about about contacting dr honeyman. Did all the paperwork 10 pages of it have sent 5 times now they all details but have not responded to me. I am now housebound and crawling round on hands and knees and only up for 4 hours a day. Husband now works from home anddoes all shopping and eever thing else.
Would love to speak with you. I don't like to ring as feel invading and I thought you retired from the hypo game. So nice to hear you on here and you sharing you story with everyone. Because its such a rare and horrible thing that happened to you. and your amazing journey back to health is an incredible inspiration.
Kate tisdell
Hi Kate, no I'm still around. Cynomel is going to be available again very soon so the Mexican Pharmacies tell me. Apparently they are building a new factory.
I am under the care of a doctor in Brussels now, in Dr Hertoghes practice. I wondered if you could get there, they are excellent and will do all your testing not just bits here and there.
You mentioned on another post to me that you are taking 100 T3! split during the day. As I've said before Kate T3 should be taken in one dose once a day as per Dr Lowe's protocol. If you trickle it into the receptor sites your body will never "wake up". That's quite a high dose and if your body doesn't need it you will not only stress your adrenals but put strain on other parts of the body. Not sure if you are on adrenal support?
I never run out of T3 as I'm not taking much now and I made sure I had enough in case there was a shortage in Mexico. However, if I did run out my doctor in Belgium would prescribe it for me.
I really would suggest you go out there to see her.
Kate still on the same email address.
I am not making a specific claim only that I didn't do well on it and was told by several private doctors that it isn't as potent as some other products which they were told by their patients. I know a lot of people that have taken the NHS T3 and then changed to Cynomel and have been much better. No I don't have evidence, the evidence is the improvement people have had by changing to Cynomel.
Hi me again
I had already posted why I thought nhs t3 not good. I'm on it and can not function I can't even shower without having to lie down after.
endo appointment on Saturday and taking ingredients with me.
Powdered acacia. Industrial methylated spirit.
terrible asthma problems .
Going to ask if got any other t3 source.
watch this space
regards
kate
Kate are you saying you have proof that these ingredients are in the NHS T3?
What I would like to know is what you are taking for your adrenals as if you had a shower and had to lay down it would be adrenal stress not necessarily lack of good T3, although taking this NHS T3 is not good and not pure.
Yes the ingredient s are listed with the medication on the label thingy. Funny thing is that it mentions on label quote. ("You have suffered from low levels of thyroid hormone for a long time, as this may affect how your adrenal glands work. You may be given additional medication corticosteroids ) thenit lists adrenal related sysmptons.
Gizmo I have been on for a year 75t4Levo and 20mg t3.
Dosage 75t4 and 10t3 in am and 10t3 at 3.pm.
yes I know I can hear u shouting from hear😤 thats why im only up for three hours a day.
yes when advised by yourself . I was on 75t3 and 50 t4.
So ran out. Went to my own local gp where i see a female doctor (main partner I fesses up the self medication stuff. Puts me back on175 t4 told me the methylpregnisolone would give me diabetics. Got ill. Next see a clinical lead who is female told her history. She had my bloods sent to a bio chemist. She agrees and is a believer of the t3. However she sent me to endo at you know where. And this is where i am.
You always told me to take meds all in one go but I don't know since menopause can't seem to take it. Just every one seems to take in divided doses.
You won't remember but my adrenal reading was a total over the day 15.
So here I am completely starting again. . Can't afford to go to Belgium haven't had holiday since09. I haven't worked since rai 2007.
Physiotherapist and teacher.
now a sack of spuds.
That's strange as by giving thyroid hormone and stating there could be an adrenal problem if you take them and then doing nothing to test the adrenals doesn't make sense.
Kate since I have seen you and I have been going to Belgium I have come to the conclusion that there is so much more that needs to be tested. I had no idea I had low feritin levels and now since taking a suitable iron tablet I am so much better. To convert T4 to T3 you need iron levels to be balanced.
Methylprednisolone won't give you diabetes if you need to take it, again levels need to be taken professionally and I am afraid to say that I have never had any tests that match the ones I have done in Belgium. My doctor out there has me on 4 mgs daily and it suits me fine. Dr Hertoghe told me that if adrenals are low then the thyroid hormone will not be pushed into the cells and I know he is right as if I don't take it I become hypothyroid.
I wish I could direct you to someone here but I just don't know anybody as good as they are there. The bloods are about £300 and the consultation about £350 as far as I can remember.
Wish I could win the lottery, I could help so many more. Well if it's mean to be then so be it.
Hi
I'm going to e-mail you tomorrow. Discuss personal stuff. Not well at all concentration gone and Fed up. Saw endo at treliske it didn't go well. Husband last his temper. Yes I found out about iron ferritin on tis site. But I have had all b12, vitd; and iron test ever year. And magnesium and folate and they come back perfect every time. The only thing that I can think is happening to me is that tissue is re-
growing as I keep getting hyper symptoms and they keep lowering my meds.
Told endo wanted adrenals checked by saliva. But no blood test done. She also said just go back on the t4.
Complete waste of time had to wait 3 hours past my appointment . Ive been in tears all evening.
I will e-mail you as I am still interested in getting help from another source.
thanks
regards kate
As usual in the UK we are ripped off for everything. The NHS is in such a state & I know first hand as my daughter works in the NHS. They could save thousands of pounds buying drugs else where & then give the right treatment to all who needs it.
Count me in as someone whose GP is now trying to force her to see some other endo with a view to re-evaluating my need for T3 vs T4!
Am not planning to take this lying down, though, since if there are several of us with the same story, that is a lot different from one person's word against a GP or NHS trust.
If anyone wants to PM me with a few details regarding whether or not they are in a similar situation ---having done well on T3 with proper endo and GP prescriptions who are being effectively forced off that with not much reason given---the information will be kept in strict confidence (I don't need your real name at this point anyway) but would help to determine whether further steps might be useful.
Many thanks!
galathea• in reply to
There is the Tpauk register of counter examples. it's a list of over 2000 people who improved with t3, then some of them had t3 stopped, and their health got worse, but improved again when given t3. ( i am one of these)
Sheila may give you actual numbers..... Worth asking her..... ( Sheila Turner runs the tpauk.com website)
Xx g
• in reply togalathea
Well I believe it. I was really not at all well on T4 and still had all the "clsasic" symptoms of hypothyroidism. I'll check it out with Sheila. Thanks!
Can I suggest that everyone affected by this issue contact their local Healthwatch organisation to report it. If Healthwatch receives sufficient complaints about a particular issue it can be pursued with the CCG.
In their leaflet, my local Healthwatch says, "For some big issues, we publish reports with findings and recommendations. This helps health and care service managers to understand what works best from the public's point of view."
Here is the link to Healthwatch's mission and aims:
healthwatch.co.uk/our-value...
Of course this shouldn't discourage anyone from taking up the matter directly with the provider, or any other means of getting the message through.
• in reply toMusicmonkey
Brilliant idea! Also, if things get trickier down the line, good filekeeping of earlier reports, complaints, notifications etc helps a lot since it does suggest that every avenue was tried before further action was taken.
helvellaAdministrator
cho_cho,
I live in the UK. But I have pretty close to zero knowledge of the plans and activities of the various pharmaceutical companies which operate here. Not even when one of the very large ones has a signficant presence within two miles of my home - and I regularly see promotional materials for that company being prepared for printing in another local company.
They could be building a T3 factory similarly close-by - without me having heard a whisper. (This I doubt very much.)
So please would you let us know why your very good friend in Mexico appears to know something that we have never seen properly backed up by any evidence?
I have no idea whether they will ever again make liothyronine products in Mexico. Could argue either way - and still be wrong.
Works for me and many others. Each to their own. 😊
Nicolas_cr, you can if the site charges £16+ p&p because it is charging less than other T3 suppliers are charging.
I get my Tiromel for £3.99 plus £6.75 postage. I don't appreciate being called a liar.
Nicolas_cr, Nikki28 has said she paid £3.99. Why would she lie? I don't know which site she used but there is a Hong Kong site which charged £3.99 + £16 p&p last time I looked. I don't remember which brand or how much T3 was supplied.
Nicolas_cr, I've just looked at the site £3.99 + £6.75 std airmail p&p for 100 x 25mcg Tiromel. Total £10.74 is a competitive price.
Nicholas_cr, It's Turkish Tiromel, not a Chinese version, shipped from an online pharmacy based offshore near China. The site has in the past stocked Uni-Pharma and currently stocks Italian T3, Thyronorm and other thyroid medication.
Online pharmacies ship out of offshore islands to get around American, European, Australian etc. regulations requiring prescriptions for dispensing thyroid medication. Pfizer Cytomel is shipped without prescription from out of Vanautu in the Solomons but it is Pfizer Cytomel, not a Philipines knock-off.
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