Feeling worse again after T3 increase and brand change, any thoughts or advice gratefully received.

[kittenmittens]

Hello folks,

I was diagnosed with Hypo-thyroidism in May 2015 and had worked my way up to 175mcg of Levothyroxine daily without feeling much better. In April this year I decided to start self-medicating with T3, so I got some 25mcg Liothyronine tablets (Brand Uni-Pharma) from Cyprus. I dropped my Levo to 125mcg and started taking 12.5mcg of Liothyronine daily and I started feeling better.

My blood results after 10 weeks of this were:

TSH 0.01 (Range 0.3-5), FT4 14.8 (Range 9-21), TT3 2 (Range 0.9-2.5) (Lab won't test FT3)

I then saw an Endrocrinologist who agreed to prescribe me Liothyronine and to up my dose, so I am now on 125mcg T4 and 20mcg T3 daily (for last 7 weeks)

However, I have begun to feel worse again, tired, depressed, feeling the cold a bit more. It's not as bad as when I was only on the T4 but I was wondering if the switch to the UK T3 could have made a difference (brand MercuryPharma)? Or if it's the dose increase? Or if it's just that my body was so happy to get some T3 that I felt a big improvement but have now levelled out again?

I know that the brand change shouldn't have made a difference, as it's the same active ingredient, and I don't seem to have been sensitive to fillers or anything before (can't compare the ingredients as the information in the ones from Cyprus are in Greek), but I'm curious to find out others experiences.

Also don't feel like I'm over-replacing as I don't have any 'hyper' type symptoms. No increased heart rate, increased sweating, loss of appetite, feeling anxious, etc. But could the increase of T3 have made a difference?

I haven't had bloods done since switching to UK T3 and increasing the dose.

Not sure what to try next -

Go back to 12.5mcg of Cypriot T3?

Drop UK T3 to 10mcg,?

Drop T4 amount?

Drop T4 and increase T3?

Any thoughts would be gratefully received.

I know this might be a bit of a strange question, thanks for reading.

[Nanaedake]

I can't answer your questions but I didn't feel well on Mercury Pharma Levothyroxine (LT4) so maybe their factory production or their formulations aren't great or don't suit some people?

[kittenmittens in reply to Nanaedake]

Thanks for the reply Nanaedake.

[Anthea55]

When I tried T3 I definitely noticed a difference between the UK brand and a US brand. You should find the fillers listed on the ThyroidUK website.

thyroiduk.org.uk/tuk/treatm...

How are your vitamins & minerals? Thyroid meds work best if they are optimal.

[kittenmittens in reply to Anthea55]

My vitamin and mineral levels are fine, they don't seem to be the problem.

[kittenmittens in reply to Anthea55]

I meant to say thanks for the reply Anthea, did you find the US brand better, and which brand was it?

[Anthea55 in reply to kittenmittens]

It was Paddock labs, a few years ago. I got it because they do a 5ug size, but my pharmacy were horrified at the price.

[kittenmittens in reply to Anthea55]

I wonder now though, with the huge price increase in Mercury Pharma's Lio, if the price would be so much higher?

[Anthea55 in reply to kittenmittens]

You could be right. I don't know how you can find that out.

[Hennerton]

I was on Mercury Pharma's Liothyronine, starting in 2014 but at the beginning of this year, I started to notice all the symptoms you describe. I sent back my current pot to MP via my pharmacy and many weeks later, they pronounced it absolutely fine. Nevertheless this went on and on. A new pot would be fine and then as it came close to its ridiculously short expiry date, I would have the symptoms again. Eventually I reported it under the yellow card system. They investigated and came back with "it's fine". I argued and after several weeks, I had an email saying that MP had discovered a problem and shelf life was being changed to one year. This is nonsense, as my new pot was again "use by" next March, which clearly is not a year. Something is going on and they are not coming clean about the problem. It also coincided with the revelation of price increases by Billy Kember in the Sunday Times, which made me even more furious with them.

As it happens a friend was going to Greece. You know the rest! Unipharma Lio is now in my cupboard and frankly it would be worth flying there to stock up, as it is so cheap, at 1.30 euros and is doing the job it is meant to do, whereas extortionate MP Lio is useless for me.

Maybe others may find it perfectly potent and I have refrained from writing this until now, as I doubted my own judgement. But the results speak for themselves. Hope this helps you and no, you are not imagining the return of all your hypo symptoms on MP Lio.

[nightingale-56 in reply to Hennerton]

MP Liothyronine sounds much like their Levothyroxine. Not fit for purpose.

[kittenmittens in reply to Hennerton]

Thanks for the reply Hennerton, I may try going back on the Unipharma Lio. Do you happen to know if you can get any other brands on the NHS?

[Nanaedake in reply to Hennerton]

Hennerton and Kitten Mittens - This report (link below) might explain some of the manufacturing challenges of Levothyroxine. There does seem to be a storage issue. It shows how it can degrade through ambient oxygen and other factors. I would say the manufacturers definitely have not yet satisfactorily cracked Levothyroxine production, storage and quality control. I understand there are other factors besides those described in this report. Perhaps the more dependent people are on Levothyroxine, the more problems they are likely to experience when quality of the drug preparations are affected?

researchgate.net/publicatio...

[kittenmittens in reply to Nanaedake]

To be honest this was a bit over my head but if the gist is that ambient oxygen can degrade Thyroxine then perhaps the difference could even be that the Lio from Uni Pharma comes in blister packs, and the Mercury Pharma comes in a tub or bottle. If it was something as simple as that it would be easy to solve, but surely the manufacturers would be aware of that, but then again maybe not. But as I said, the paper was a bit technical for me, and there do seem to be a lot of other factors in the study, and it's also on Levo rather than Lio, so just a thought.

[Nanaedake in reply to kittenmittens]

Yes, it looks complicated. It looks like the document is saying that the blister packs don't protect the levothyroxine from degradation caused by ambient oxygen because the tablets are not vacuum packed so that as the packs get toward their use by date, the active ingredient degrades. It seems like producing Levothyroxine in large quantities means they have to use excipients that will allow the drug to be scaled up but the excipients can effect the way the drug is absorbed. I don't know if it's true of both Levothryoxine and Liothyronine as here they are talking about Levothyroxine. What I extracted from this is that the manufacturing process is complex and it's also important how the tablets are packaged because it effects the life of the drug. To me it seems that there's a lot of factors that can damage the quality of the drugs so that it's not surprising that patients might feel ill and not know why. I'm wondering if NDT is prone to so many manufacturing variables or whether the quality is more reliable?

[Nanaedake in reply to Nanaedake]

Reading the article again, it's the bulk material during the manufacturing process that they're saying is vulnerable to oxygen. And the manufacturing processes that introduce heat with oxygen. But it is saying in the conclusion that the influence of light, heat etc needs to be looked at in terms of packaging and storage.

[Hennerton]

The only time I know that other brands were imported is when MP had a serious shortage in 2013 and it was out of stock in many areas. I think Pharmacies were allowed to source it for their patients until it came back into stock but only under such special conditions.

I would say go back on Unipharma if you can and report the problem under the yellow card system, to MHRA, as mine was a lone voice in June this year.

It is disgraceful that our NHS is paying a huge price for an inferior product. To see what is going on, use your search engine to look up The Sunday Times article by Billy Kember on "NHS loophole allows price hikes on generic drugs".. There is a long thread on HU too. Very interesting.

[kittenmittens in reply to Hennerton]

Thanks Hennerton

[Nanaedake in reply to Hennerton]

Please do keep reporting drugs when they're not adaquate. When I was switched to MP Levothyroxine after Eltroxin was withdrawn I became very unwell again. I reported it through the yellow card scheme and contacted the manufacturer who said it was exaclty the same formulation. When I asked them if the solvents they were using to convey the hormone into the excipients was exactly the same they didn't reply. I heard nothing from them thereafter. One of the reports I read, I think from New Zealand investigation, said that if the molecular size of the solvents were varied or the ratio of one solvent to the other was varied it could affect the dissolution of the drug and potentially the absorption for the patient. It shows how challenging the drug is for manufacturers to produce. It's difficult for us patients to report problems because the changes are slow so that after switching to another formulation it can take a few weeks or months for problems to become apparent. This cuts some slack for manufacturers but is a problem long term for patients as it's hard to prove where the problems are coming from. I think the only way is to keep reporting if you think there is a problem even if unsure because it's up to the MHRA to prove or disprove there is a problem. Also, keep your emply boxes for a few months at least in case there is a problem, then at least you have the manufacturing number.

[kittenmittens in reply to Nanaedake]

If I switch back to Uni Pharma and feel better again I'll definitely report Mercury Pharma through the yellow card scheme.

[KS69 in reply to Nanaedake]

How do you get tablets actually tested? I would like my Teva tested, both the T3 & T4 feel like they have no active ingredient.

[kittenmittens in reply to KS69]

I'm not sure if there is anyway to get this done. Perhaps if you post on the main page someone might be able to help you.

[Nanaedake in reply to KS69]

To my knowledge there is no specific way of getting tablets tested. You just have to report faulty meds to MHRA. TEVA levothyroxine has a past history of being faulty but the liothyronine seems to have been OK.

[kittenmittens in reply to Hennerton]

Update: I went back to the Uni Pharma at 12.5mcg (instead of 20mcg of Mercury), and felt better again, so I submitted a Yellow Card Notification for the Mercury.

[Hennerton in reply to kittenmittens]

It will be interesting to see what the MHRA say, as I gave up with them. They wanted me to send in about 25 T3 tablets from the batch I was complaining about. I told them to get some from MP, as my GP had paid a huge sum for one pot and would not be happy for me to be sending them off for testing and asking for another pot. I assume all tablets in a batch are the same. Have heard nothing...

[Nanaedake in reply to kittenmittens]

You changed the dose as well as the brand so I presume you don't know whether it was the dose or the brand that improved your symptoms? Very important to only make one change at a time if you want to be sure what is causing problems. Anyway, let us know what MHRA say, it will be helpful.

[kittenmittens in reply to Nanaedake]

Thanks Nanaedake, however, this post is from 4 years ago, the MHRA never got back to me.

[Nanaedake in reply to kittenmittens]

Oh, I realised its an old post. Someone must have 'liked' it because it was highlighted for me. Too bad MHRA didn't respond. I hope you got it sorted out in the end.

Levothyroxine improved in the UK after 2015 when all the old stocks were finally cleared from shelves after the 2012 MHRA review. I don't know about liothyronine - more the cost issue I think.

[heathermr]

With your TSH this low all of the T4 you are taking are being converted to Reverse T3 which is blocking the action of any T3 you are taking. I was in the same situation and spend a long time being very ill. My TSH does not work as I have some pituitary damage and my TSH is zero. Because of this I went over to just T3 medication a number of years ago and have made a decent recovery until the dreadful MP T3 which is sending me back down the hypo line again. Having complained endlessly both through the yellow card system and to the manufacturer of the poor quality of this medication, I am now trying to get my Gp to change my prescription to Cytomel to regain my quality of life.

Heather

[kittenmittens in reply to heathermr]

My TSH has been coming down to that slowly as I increased by Levothyroxine. When I was on less Levo and my TSH was higher I felt worse. I may try T3 only in the end but starting slowly on a combination for now.

[Musicmonkey in reply to kittenmittens]

You could increase your T3 slightly as there is room for a small adjustment.

However I am no expert just a fellow sufferer.

[kittenmittens in reply to Musicmonkey]

Yeah, my plan is to slowly increase T3 while decreasing Levo, and seeing how I feel with each increase.

[KS69 in reply to Musicmonkey]

What's a good T3 level to aim for?? Mine is 5.4.

[kittenmittens in reply to KS69]

Is that FT3 or TT3? What is the range on the test? It should be printed on the test results sheet.

[KS69 in reply to kittenmittens]

Unfortunately I don't have a print out, it was just in the letter from the Endo to my GP as it was sent out after my appt and just says 'T3 5.4'..

I did get the previous report and that time was FT3 with range 3.1-6.8 so presume may be the same.

[kittenmittens in reply to KS69]

Well, the Dr's won't be happy if you go out of range and would probably lower your dose of thyroid hormones, so it's good that you're in range. I'm not sure there's a 'good' level to aim for, it's finding the level you feel best on. So, you could possibly increase your Lio while decreasing your Levo (if you're taking both that is), and see if you feel better with a higher T3. But if you're getting the medication from a Dr they won't allow you to go higher than the range.

[KS69 in reply to kittenmittens]

Yes though I'm only on 50mcg Levothyroxine. The T3 only gives me energy for a short period, despite the two doses so the rest of the time I'm more tired, it's up and down during the day depending on how long from taking T3 it has been!

[kittenmittens in reply to KS69]

So are you only taking Levo?