Is anyone having potency issues with T3 - Thyroid UK

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Is anyone having potency issues with T3

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40 Replies
nobodysdriving profile image
nobodysdriving

nope, not me

in reply to nobodysdriving

What can I say?

in reply to nobodysdriving

are you taking NHS Liothyronine

nobodysdriving profile image
nobodysdriving in reply to

yes have been on NHS stuff since last year in November (apart from a few 'blitz' where I tried thybon and tiromel)

in reply to nobodysdriving

I bought Tiromel -how did you find it. I dont reckon much to it to be honest, but it may be me??? How come your not feeling crap on NHS T3?

nobodysdriving profile image
nobodysdriving in reply to

I don't know Reiki, they are all the same to me, Tiromel was the same as NHS as cynomel as thybon, it is all T3 to me and it does not make any difference LOL :D

Jackie profile image
Jackie

Nor me,I believe some people did a while ago, is it old stock?

Jackie

in reply to Jackie

You can't be on the batch in question then, every one else feels the difference

Jackie profile image
Jackie in reply to

Hi I am sure you are right. My script is from a small pharmacy so quite likely "we" have not yet reached the off stock,My numbers on the script are certainly different to the suspect ones.. I cannot think of any other reason. Incidentally I have to have thyroid tests every 2 -10 weeks, usually far less than 10 weeks, so I would certainly know.

Best wishes,

Jackie

sarahstevenson profile image
sarahstevenson

I am! batch 81711 really not effective → _→ have submitted yellow card and know another patient who has done too. Am writing to my GP and endo but not sending letter until Dec as my son has an appt in same dept and I don't want to jeopardise his outcome. In the meantime I'm waiting for a cynomel order to tide me over. I wonder whether it's batch strength or fillers.

mickstability profile image
mickstability in reply to sarahstevenson

I've just done 4 weeks on batch 81711 and found I had to up the dose from 60mcg to 80mcg per day to feel OK - I hadn't thought about batch strength, thought it was just me!

in reply to mickstability

No no, I think every one taking this is feeling not so great, if you were on T3 last year compared to this year I feel sure you would feel the difference

sarahstevenson profile image
sarahstevenson

PS Nutri thyroid is helpful in filling energy gaps whilst I wait for the cynomel order to come - really hope it comes soon - long delays at the moment due to customs.

serenfach profile image
serenfach

I was getting better since starting T3, then had a downturn with one of the dodgy batches. I recovered slightly on the next replacement batch, but am going downhill on the current batch, with all the old symptoms returning. The current batch does not seem to have a batch number anywhere on the pot. I recently had a blood test and am awaiting the results, although the TSH has come back at 0.08 and the nurse on the phone said there was no result for T3 or T4, but I will try phoning again today and hope to get someone who can read! Had all the vit tests too, but they take longer to come back. I know it sounds stupid, but I am hoping it is another dodgy batch, because I have run out of other options and feel really grotty!

in reply to serenfach

What batch number are you taking. I know Sarah is still suffering poor love x. Seren face have you submitted a yellow card. You really should if you haven't already xxxx

mickstability profile image
mickstability in reply to serenfach

Expiry date of MercuryPharma batch 81171 is 29/04/2016, if this helps!

princessze profile image
princessze

I have just started taking lyothorine ( have I spelt this right), only, feeling good, it just came in a brown bottle , nothing on it about makers or anything, will chemist tell me as don't want a different brand as seems to agree with me x

Stourie profile image
Stourie in reply to princessze

There is only the one brand in the uk so no worries there. The chemist should give you the PIL with the brown bottle. Boots changed them from the original tub to a brown bottle and they always did it through the back and I didn't like it but that was their policy so I changed to a small private chemist and get much better personal service. The lio is in the original tub.

Jo xx

princessze profile image
princessze in reply to Stourie

Thanks Jo , this is good news , thank goodness it working ok so far anyway, keeping my fingers crossed lol x

serenfach profile image
serenfach

I submitted a yellow card for the first batch (did not hear anything back - should I have done?) but no batch number on this pot, so cannot submit a yellow card. I may try calling in to the chemist, but it is journey of 14 miles.

helvella profile image
helvellaAdministratorThyroid UK in reply to serenfach

Really not blaming you, but no-one should ever get a prescription fulfilled without both the batch number and the expiry date being provided. It should be an absolute duty on a pharmacist to ensure that happens. Only when they fail to do so, please folk, do ask before you accept the medicine into your paws.

Rod

everydaycrafter profile image
everydaycrafter in reply to helvella

My local Boots used to put all my liothyronine into a brown pot - they said it was a safety cap issue! Now my husband always collects my meds and insists on the white pots or he won't accept it.

sarahstevenson profile image
sarahstevenson in reply to serenfach

Hi Serenfach

You should have a confirmatory email if you completed the online form - I now ask my pharamacist for the batch number and record it myself - as Rod says they should label it correctly. I always check in front of the pharmacy assisitant after the problems earlier this year.

:-)

jeans profile image
jeans

I've been having potency issues with t3 since may/June. I have yellow carded 4 batches and only heard back last week. They asked for more information and any recent blood test results. I am a patient of a well known private doctor and he said its not enough to send a yellow card we should complain to Chief Medical Officer - Dame Sally Davies, Dept of Health, Richmond House, 79 Whitehall, London, SW1A 2NS.

in reply to jeans

Jeans your a star. I've been waiting so long for a port of call. This address the ticket to get something done about the dodgy batches of Liothyronine, the NHS version has made me so ill over the past 8months having gained weight and getting all the horrid symptoms back its been awful. I urge all concerned who has had potency issues......erh erh Sarah.....yes you too missy, to get pen to paper and let off some steam regarding how its been troublesome and made you ill. The only dodgy batch number I have kept hold of is 81171 I do have more that I refuse to use which do not have a batch number it came in the brown bottle this too is low potency. I've had to buy my own T3 but I recently ordered another prescription and went to a different chemist who gave me NHS T3 with the batch number 81377 had I returned to the chemist where I normally get my prescriptions I would have ended up with 81171 as they ordered them in a large quantity. Please folks help yourself and others by reporting any low potency NHS T3 it's the only to go if you want your health back. Xxx

ourida55 profile image
ourida55

Well after feeling rotten for the past 2 wks I saw my doc this afternoon, hoping that I needed a higher intake of vitamin D or B12 as I had bloods done weeks ago for quite a few things and had heard nothing.. but unfortunately the doc said my results were'nt low enough to be topped up on the NHS so was advised to top up over the counter if I thought I needed to. Now that Ive read all these posts about T3, Im thinking I started a new batch at about the same time as I began to feel lethargic and slowed right down both physically and mentally so maybe the new batch is to blame but I can't submit any batch number as they always come in a brown bottle with no number. I will go back to Boots tomorrow and ask if they can give me a number and then I will definitely send a letter of complaint about the strength of my T3.

Thanks for providing the address to write to as I have no idea how to send a yellow card and I will ask for all future batch numbers to be printed on the label along with the use by date, which is also not given..

Good luck to you all out there, who are feeling very unwell because of this and I hope you will complain in writing too... and maybe it won't keep happening..

Sylvia x

in reply to ourida55

Hi Sylvia. Yes im afraid its happened to most people who are on T3 - having potency issues, I was complaining back in Jan 2013 but nobody else seemed to be feeling any different but as months have passed by there is a substantial amount of people on NHS T3 who have felt there symptoms returning, I don't mean the folks who fund there own T3 they will have not witnessed these symptoms due to buying it from abroad but certainly the NHS patients have, You can submit a yellow card but you do need the batch numbers of the T3. Your chemist / GP can also submit the yellow card for you. Dont expect to hear back from them but if you do the submission yourself online it keeps a log of it for future reference. I am sure this site had a link for the yellow card, maybe Louise would be able to help with the link for it. Good luck xx

in reply to

Actually Sylvia, Please read 'jeans' post above , you need to put it in writing instead of submitting yellow card, the address is on Jeans post, Cheif Medical Officer, Dame Sally Davis, Department Of Health, Richmond House, 79 Whitehall, LONDON.SW1A 2NS.

Beverleyb profile image
Beverleyb

I have just been given a trial of t3 from GP,at the end of the fourth week I felt great,at last. Low and behold after starting the second batch I have got my hypo symptoms back,worse than ever. After reading,Reikimasters post I checked the batch number it is 81171, I would never have thought of faulty batches,I would have gone back to GP and he would have probably taken me off them.hope he believes me when I ask for another prescription,thank you all.

in reply to Beverleyb

Beverley, Please try a different chemist, smaller ones may have to order it in so you will get a fresh batch rather than have the 'left overs'. Or tell the pharmacist that you want to know which batch number they have left- you can ring up and ask, If its the dodgy ones ring round a few chemist and ask them which batch numbers they have in stock . Avoiding the 81171. Also submitting a yellow card for the low potency T3. You voice needs to be heard. Good luck xx

in reply to

Go for the address above, and write a letter of complaint to the recommended post from Jeans, I totally forgot about this post-----lack of T3!

Beverleyb profile image
Beverleyb in reply to

hi reikimaster,thanks for the advice,I will try a smaller chemist and will always check batch numbers from now on.I will certaintly write a letter of complaint too. Many thanks.

in reply to Beverleyb

Not a problem, we have to help one another.

sarahstevenson profile image
sarahstevenson

SEE MY REPLY TO AN EMAIL SENT BY MHRA ASKING FOR MORE DETAILS ON MY YELLOW CARD REPORT RE LAST TWO BATCHES OF LIOTHYRONINE

"In reply to your enquiry I can confirm the two batches of Mercury Pharma liothyronine 81711(*) and 81377 continued to be apparently ineffective for myself and maybe even detrimental. Raising amount under GP supervision seemd to make no difference.

My supposition is this could be due to

strength of active ingredient

a change in filler

a change in my response to the filler

(Hashimoto's being an autoimmune disease)

You may have additional theories.

I am due to collect a new prescription today.

My next NHS Endocrinology and GP review is due in December, I am preparing a letter and data for those appointments. I have decided to wait until I have collated daily diaries to enable my GP and Endo to help me manage my health rather than going at the moment, before my review date and with too little information.

I could send you samples of the above batches for testing if helpful.

I have looked at the Drug Analysis Print but cannot see that there is a distinction between different batches in that report. The issues, signs and symptoms listed seem to be due to undertreatment of the patients' condition rather than side effects of the medication.

I could take the list and say how each has changed for me as many are very familiar.

(*) WHOOPS SHOULD READ 81171 WIL LET THEM KNOW.

I SHALL ALSO WRITE TO DAME SALLY DAVIS - THANK YOU JEANS FOR ADDRESS. REIKIMASTER YOU ARE A STAR FOR POSTING THIS AGAIN THANK YOU! SORRY TO HAVE BEEN OUT OF THE LOOP AS I HAVE BEEN AWAY.

COME ON FOLKS THERE WERE ONLY 83/4 RECORDS OF YELLOW CARDS RE LIOTHYRONINE ON THE MHRA WEBSITE. REIKIMASTER HELPED ME BY LETTING ME KNOW I DIDN'T HAVE TO COMPLETE THE GP DETAILS.

THANK GOODNESS MY CYNOMEL HAS ARRIVED - 19 DAYS AFTER PLACING MY ORER AM OK NOW FOR 8 MONTHS YIPEE!

GOOD LUCK EVERYONE ( I HAD DONE A BETTER POSTING BUT LOST IT -WITH ONE PRESSS OF A KEY HOPE THIS ONE MAKES SENSE)

:-) X

serenfach profile image
serenfach

I phoned the chemist and was told my batch number was 81377, so I told them this was a "yellow card" batch. She said they had today had an email about one batch to be withdrawn, but it was not this one. She said she could not replace them with another batch until they had been recalled, so I had to go back to the GP and ask for another script. I rang round the local chemist and one had a batch of another number so I will have to try and get this one! What a hassle, but worth it if I can get back to where I was before.

I wish I had the money to send the dodgy batch to an independent lab to find out what is in the batch, then maybe someone would listen, as it would come under Trading standards! I dont know what had gone wrong, but I wish the head of the company could feel like I do for a few hours, then maybe he would change the pills!

sarahstevenson profile image
sarahstevenson

Mmm there's a thought Trading Standards - wonder if it's worth a shot. Has anyone tried that approach?

Hi Sarah, I dont think trading standards would do anything , But well worth a phone call . You mentioned another number 81377, I have this one now, Ive actually been taking this because the Cynomel and Tiromel was not doing anything for me either. Any one else suffering with other brands?

Katkin1 profile image
Katkin1

I have just been reading this thread and had a 'lightbulb moment'. I have just stopped taking Liothyronine batch number 81711 and am now on 81377. Despite being put on 50mcg a day, alongside my 100mcg, I do not feel well - extremely tired etc, but on 50mcg started having mild palpitations. My endo thinks there is something else wrong with me as my blood test results on 50mcg were:

TSH 0.01 (0.35 - 5.5)

T4 12.1 (10.5 - 20.00)

T3 6 (3.5 - 6.5)

and he now wants to reduce my T3 again. Has anyone had any feedback with regard to the potency of these batches or anything I can go back to my endo with, before he takes me off of T3 totally?

Best wishes

Kathy

Kathy. Are you taking T3 on its own or do you take it with Levothyroxine or Armour?

Katkin1 profile image
Katkin1 in reply to

Hi reikimaster

I take T3 and 100mcg T4. Was on 50mcg of T3 which has now been reduced to 40mcg. T4 has stayed the same all along except for prior to the introduction of T3 when Levo was 150mcg. I started off slowly with the T3 ie 15mcg a day, the 20 then 25. The endo then told me to take 50 divided into two doses. Although he didn't tell me to, I raised the T3 slowly over a couple of weeks. Taking 50mcg didn't suit me (palpitations and big dip in between doses - he told me 12 hours apart) so I did 20, 20, 10 which still didn't make a tremendous difference but was better than the lower dose and much better than no T3 at all.

Kathy

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