I have been on Levothyroxine for a few years now and I have never felt any difference on it or off it. The first brand I was on was Wockhardt and after a few weeks of taking it I began to itch, literally from head to toe. Went to my GP who said he'd never heard of it causing itching and advised me to "get rid of my 9yr old cat". Imagine my reaction to that !! I knew the Levo was the cause because I'd discontinued the med for 4 weeks and the itching stopped. I went to another doc. Who at least listened and after a while supposedly contacted an endocrinologist. My med was changed to another brand and all was well, although I continued to feel no different and, put on enormous weight but the itching stopped. I have had a couple of different brands since but the latest was Tevla. And hey Ho I'm itching all over again. I can't remember last time I had a blood test so I wouldn't really know whether I had the condition or not. I stopped taking the Tevla and now my latest electronic script is Almus, PL Holder Barnstaple, EX32 8NS. After all the grief I have had with this drug and condition I feel that I'm better off with the illness rather than the treatment. I'd like to hear of any others out there with itching problems due to Levo. Or any problems with any of the above.
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Levo is a thyroid hormone, T4. It's doubtful that is is the active ingredient causing the problem, it's the fillers in the tablet. The fillers in Teva cause problems for many many people. And, doctors and pharmacists have never understood that they should not be swopping and changing brands all the time because it is bad for the patient. Ask your doctor to write prescriptions for the brand you know did not cause itching, and insist to your pharmacist that you want that brand and no other. If he cannot comply, change pharmacy.
But, that has nothing to do with why you've never felt well on levo. There are two possible reasons for that:
a) you've never been on a high enough dose
b) you cannot convert T4 (storage hormone) to the active hormone T3 very well.
But, as you doctor appears to have been extremely negligent with testing, you won't know if either of these is your problem.
You should be tested six weeks after any change in dose AND after a change of brand! I think that if they understood that, they would stop changing brands so often. Once you're stable, they will of course only test once a year, which is farcical, but that's the way it is.
So, seems to me, you should go and see your doctor and insist on an immediate test. And, not just TSH, either. You want TSH, FT4 and FT3 - I think he owes you that, given that he has been negligent.
There also a possible third reason: low nutrients. All nutrients need to be optimal for your body to be able to use thyroid hormone. But, some more than others. So, you should have vit D, vit B12, folate and ferritin tested, and supplement anything that is suboptimal - with its cofactors.
And, if you manage to get all these ducks in a row, and levo still doesn't help you, then you have the option of self-treating with NDT or T3 - you're highly unlikely to get those on the NHS. But, we're nowhere near that point, yet.
As to whether you would be better off with the disease than with levo, I think that just goes to show that you are only in the early stages of the disease. Hypothyroidism causes a slow decline of your entire body. Every organ is affected. And, if you are left untreated for too long, and not killed by a heart attack or some other organ failure, with all the misery that that causes, it ends in myxoedema coma and death. Personally, I think I'd concentrate on getting those ducks sorted, don't you?
Thanks for your reply. I shall take your advice on board. The doctor who finally prescribed a different brand from the Wockhardt did write a letter to the pharmacist but it looks like the pharmacist has completely complied with those instructions. So my first port of call is going to be the pharmacist. I assumed that they would know not to give me a brand associated with Wockhardt , Tevla or Activis who all seem to be under the same umbrella. None of those are the brand that I was OK with so I need to find out which one it was.
Once again Grey goose, thank you for your time and trouble
Just to make you aware - Actavis, Almus and Northstar are all one and the same. Almus is Actavis rebranded for Boots and Northstar is Actavis rebranded for Lloyd's Pharmacy. The blister pack foils all say Actavis and Actavis will be somewhere on the box as well.
Here are all the brands and you can see who the manufacturer is for each one
Thanks for you response Seaside. I know these brands are all related. I did a lot of research on this before heading down to the pharmacy with my issues. He's a nice guy but I got exactly the response I was expecting. That they have no control over which brand they are sent even although.the GP has sent a letter asking them not to dispense Wockhardt. He tried to convince me that these brands are not all the same . They have to dispense what they are sent. I have my own reservations on all this. I guess I have to find a GP in my practice who will listen and do something.
I am hoping to find the name of the brand I was using which were ok. If I can do that I will not use Tesco pharmacy any more.. Thanks again for your reply.
Thank you seaside susie. I didn't have a great deal of success with my pharmacist in trying to identify the Levo brand that I was OK on. He tells me he has no idea which brand was dispensed to me previously. This sounds silly I know but all I remember was that they were pink compared to the other brands which were white. Would this help in identifying the brand, and the fact that they came in a turquoise and white box.? Sounds silly I know.
This sounds silly I know but all I remember was that they were pink compared to the other brands which were white
As far as I am aware UK Levo brands are all white tablets. Synthroid (US brand) are pink, and possibly some other non-UK brands - goodness knows why, I've never understood the reason why we need coloured pills!
helvella - am I correct, are all UK Levo tablets white?
Thanks for the Levo pictures. Very very helpful. Yes that is the box I remember but I am on 50mcg now and had the blue Tevla box which are the ones causing itching. Back to the drawing board. So the ones that were ok are somewhere between those two. I shall try to get an appt. with my GP (hopefully before the year is out) to look back and see if he has a record of when he increased my dose.
That will help somewhat. And yes they probably were white. I think I'm losing it!
Thanks for your welcome reply. I am going to try and get an appointment with GP and go back to the drawing board because I'm lost in it all now. Thanks once again
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New to Levothyroxine and feeling terrible
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