I have posted before on my reaction to being allergic to various brands of Levothyroxine. I have Hashis and PA.
I have been fine on Actavis for years. Now Accord have taken over Actavis I am having a severe allergic reaction to the Levothyroxine. I know it's that, because if I stop taking it, the allergy goes away.
I have had various conversations with my gp and pharmacy. The pharmacy have trialled me on (still Accord). But giving me 3x50mg. I was on 150mg, but a recent blood test was TSH 5.4. So gp. upped my levo another 25mg. North Star brand.
All the advice they give is to take antihistamines with my levo.
The pharmacy said they could give me liquid levo. But the cost is prohibitive.
All the information from NHS website says to stop taking Levothyroxine if you have an allergic reaction, as does the leaflet with the levo.
I have only seen one endo since I was diagnosed with thyroid disease and that was 14 years ago. And they were no use then. I have not been offered one.
It seems I am on my own with this one.
Medication I can't tolerate, and a surgery that is not helping.
Don't they have a duty to care?.
What do I do. I have no idea.
This very sore rash is from the top of my chest, up my neck and sides of my face and is now going into my eyes.
I need to see a doctor today, as I am going to stop taking levo. And when I do, the allergic reaction goes away.
If anyone has any advice, or who has experienced the same, please could you help, thank you.
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Mannequin18
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Accord have owned the company that makes the levothyroxine since around April 2017. But the issues appear to have started in 2020. So I tend to think that ownership of the company is not, in itself, the issue.
The intolerances reported appear to have started early 2020. Around the time that the packaging changed from Actavis to Accord.
Even though the time seems about right, I think we have to be careful.
We are not certain that the change occurred at exactly the time the packaging changed.
We are not certain that any change was intentional.
The NorthStar branded 25 microgram tablets are actually made by Teva. (But 50 and 100 microgram tablets branded Northstar are Accord product.)
This is my thyroid medicines document which lists all make sin the UK (and many others):
Your GP surgery and pharmacy need to take the issue you are having seriously. You are quite right in my view, you should not have to keep taking them if they are having this impact on you. Taking antihistamines is useful as a technique to prove the issue but should not be treated as a long-term approach.
If you end up needing levothyroxine oral solutions, and they are expensive, it is not your fault, and it shouldn't be your concern. (I know that this belies the fact that you will likely be made to feel it is your fault.)
I don't know where a lot of us would be without this forum.
I have only this year started having a problem with the Levothyroxine from Accord. I did send them a message, but no reply. I did fill out a Yellow card, but they wanted the number on the box. I gave them the number, but I have not heard back from them either. It's not the batch number, it's the whole thing.
I will fill out another yellow card, but it will probably be the same, as they are only looking for faulty batches, and not the whole product.
There was nowhere on the yellow for to explain this. Only standard replies.
Thank you again. I will contact my surgery asap. I can't go on like this.
Hi Mannequin18, just read your reply to Helvella.... I wouldn't worry about completing batch number to Yellow Card. I couldn't complete this due to the length of period I was reporting on. After the batch box, you get the opportunity to report your experience in detail, I'd recommend doing that. Try not to feel alone in all this, Helvella's advice was spot on. Good luck.
I am going to fill out another one, and ring Barnstable. But I read somewhere that Accord are now being produced in India. Of course that could be false. I was reading the history of the family owned business Actavis, and that information came up.
The history of Accord levothyroxine in the UK started with Arthur H Cox, bought by Hoechst, then sold to Alpharma from Iceland, then Actavis, now Accord (who are owned by Intas).
Yes, thank you. I already have stomach erosion, and these Teva tabs are like knives in my stomach. I can't get my GP or pharmacy to take me seriously. They are not willing to do anything for me. Apart from telling me to take antihistamines. I am going to send them a letter asking them to guarantee that these levothyroxine tabs are not doing any harm. And I want them both to sign it.
Morning Mannequin18, I'm sorry to hear about your current symptoms. Like you, I suspect I've had bad reactions to Accord since Activis has been rebranded. I finally stopped taking Accord eight days ago after becoming unwell for a second time, and haven't taken Levothyroxine since. My GP confirmed it would be safe to continue phasing out Accord from my system for another two weeks before restarting a new prescription for Eltroxin. Symptoms are subsiding, which is a relief. I have reported my experience to Yellow Card. I hope you feel better soon.
Thank you for sharing your experience. I cannot take Eltroxin either. The only one I could tolerate was Actavis. Hope you have a better experience. Good luck.
I know nothing about Eltroxin, did you find there's an issue with dosage strength or fillers? I'm feeling nervous about starting it. Isn't the treatment of thyroid health becoming intolerable.
I have just been on the German apothecary web site to see what they have. I tried to buy some, but it wouldn't go through. I am wondering if it is prescription only.
I had a telephone appointment with my GP today and he is ordering the liquid levothyroxine for me to trial. So Good news. I hope I am okay with it. If not I don't know what else there is.
i was taking Actavis Levo 150mcg daily for donkeys years, felt really well on it with absolutely no issues at all right up until around the time they changed from Actavis to Accord i then developed arm and leg tremors, leg weakness, muscle twitching, blurred vision, breathlessness, sleep issues, alarming hair loss.
I phoned Actavis/Accord head office in Barnstable on a number of occasions and spoke to senior personnel and enquired as to whether any of the constituents had been changed to which i received a firm "No, none whatsoever" although they did declare that they "outsource" the fillers.
To my mind it's too coincidental, i can't fathom being well for many years and then all of a sudden around the time of the name change i suddenly develop a list of symptoms as long as your arm.
What is puzzling though is that there seems to be quite a number of people on here who have also taken Actavis for years and have continued with it through the name change and have reported no issues at all but others who have also declared problems since the changeover, albeit no one seems to have reacted as badly as myself with all the symptoms i developed, i suppose some of it could be put down to our own individual systems, i do know i'm mega sensitive and i did experience two significant physical incidents over a 5 month period prior to my issues developing which may or may not be a factor.
I persevered with Actavis for a few months trying different batches but to no avail, i then switched to Mercury Pharma Levo and the severity of my symptoms dissipated although i am definitely not right with continuing deterioration, i do feel as though Mercury Pharma is not as strong or potent as Actavis though so it's possible that some of my persistent decline is due to the small difference i perceive there to be between the two brands.
I phoned Actavis/Accord head office in Barnstable on a number of occasions and spoke to senior personnel and enquired as to whether any of the constituents had been changed to which i received a firm "No, none whatsoever" although they did declare that they "outsource" the fillers.
That is interesting. So effectively they have no control over the fillers and it's possible that those who have reacted to the rebranded Accord may be reacting to the fillers.
I'm one of those who have taken Actavis for donkeys years and have had no adverse reaction since it's been rebranded Accord. I imagine that I am generally pretty tolerant of medication and excipients, I take other medications some of which elicit strong reaction in some people but I've never experienced any. The only medication I have reacted to, up to now, is inhalers, it took me quite a while to find one that didn't cause me problems, and when the surgery changed the brand of one of them (cheaper but same active ingredient) it coincided with triggering another medical problem for me and eventually the surgery allowed me to go back to the original brand which is now named on my prescription.
I remember you have taken Actavis/Accord for donkeys and had no negative reactions at all.
i thought that as well about the fillers and it is possible that's where the issues are originating from for people with a more sensitive system like myself, it's so frustrating and annoying because Actavis used to work so well for me and it has been a slippery slope ever since
Further evidence of my mega sensitive system is when i try and take different types of supplements i get significant palpitations and so then have to discontinue taking them, and that's after only taking 1 or 2 tablets or capsules. i'm not really sure whether it's the brand, the supplement itself or the excipients, probably the latter.
I'm sorry to hear your experience was so severe. In an earlier reply I did some research on the Actavis company. It has been a family run business for many years. I also read that now Accord have taken over, they are outsourcing to India. So whether we ever find out what has changed to our levothyroxine, I doubt it.
Ask your doctor to refer you to an allergist to find out what you are allergic to. There are very few allergists so there may be a long wait but you want to get in the queue.
You could check the Product Licence number of the two brands to see if it is different, this will confirm they are different formulations.
So sorry. Only thing I can think of is to write to the manufacturer and ask then if the product has changed. You could also ask them to recommend how you could check for an allergy to the tablets- I’m thinking it might be useful in persuading the surgery to take action.
They won't consider liquid because of the cost. And they are trying to put me off, saying that I would probably be allergic to that as well. But not giving me the chance to try.
I have been on the German web site. I tried to order it but it wouldn't go through. Do you need a prescription? It's not that expensive. The one I looked at was 175mg x 100 sticks for 44euros. Have I got the right one.
Mannequin18 @I bought the Tirosint gel capsules from IBSA in Switzerland, I got a private prescription and my pharmacy ordered them for me. £150 for 50 x 25mg capsules. However, after taking only 2 over 2 days my heart literally palpitated into my throat a lousy feeling.....
I had a telephone appointment today with my gp. And he is ordering the liquid for me to trial. So that's really good news. I just hope I don't get an allergic reaction to it. Or what's next.
Mannequin18 @I checked excipients in different liquid levothyroxine and found Teva had the least nasties so I ask pharmacy to always get me Teva. If you Google liquid levothyroxine you will find a list of different types and see what excipients they contain 😊 levothyroxine tablets work out around 4 pence a day. Liquid levothyroxine works out around £7 a day for 7.5 mls
My GP has ordered the Teva one. So fingers crossed that this is the solution.
I have not had any levothyroxine since Thursday. And at the moment am sipping dispersable aspirin to combat the pain and irritation in my neck and face.
I don't know how long it will take to get my prescription, but I can't take any more of the Levothyroxine tablets.
Thank you for all your input, it has helped me a lot.
I will post my reaction to the liquid levothyroxine, as it might help someone else. Thanks again.
Mannequin18 @I think you need to DEMAND a trial of liquid levothyroxine. I have had horrid reactions to all levothyroxine tablets.
I also used to take piriton antihistamine to try and help with lousy side effects.
The only way I found out for certain that the levothyroxine tablets were the cause was to quit taking them for a week and by then I would feel so much better.
I told my GP/ENDOCRINOLOGIST that I would not take the tablets so my Endocrinologist asked my GP to give me a trial of liquid levothyroxine (late 2020).
I was in Hospital very recently via 999 so didn't have my levothyroxine with me.....The Hospital pharmacy didn't have any liquid levothyroxine so I didn't take any for 6 days. I didn't notice a difference during my stay in Hospital (without levothyroxine), except I did have an appetite which is something I struggle with normally. Hospital was for stomach problems (pain, hernias, IBS they say)!
I think it would be a good idea to ask your GP if he would refuse a diabetic insulin (and if the diabetic was allergic to one medication would he/she not give an alternative Regardless of COST)?????
GP'S ENDOCRINOLOGIST'S have a lot to answer for keeping us I'll with their cheap nasty medications from Big Pharma.
I wish you all the best and please do absolutely INSIST on a trial of liquid levothyroxine. Main constituency includes glycerin and E219. ALL THE BEST 🤔😊
Thank you for the great advice. I am definitely going to insist on a trial of the liquid. It's not my fault I can't take any of the Levothyroxine that they have given me. I know I am going to have a battle with them. I don't think it is responsible of the to say, take antihistamines with them, I find that outrageous to take a medication, and then another tablet to stop bad reaction to the medication to make you feel better. How crazy is that. I know it's going to take a while to sort out. I am very worried what this Accord Levothyroxine is doing to me, for all I know it could be carcinogenic. It feels very weird, it feel like it has gone into my eyes. I already have glaucoma, so I don't need any more eye problems. Also if I take the Levothyroxine they have given me, I also have to take Omeprazole to counteract the knives in my stomach.
It's beyond belief.
Wouldn't it be wonderful to have a gp who actually understands health.
Mannequin18 I also have glaucoma and been using eye drops for over 20 Years. I have very sore, dry eyes also (blepharitis). Hyloforte cream eye drops are soothing.
I had worse problems when actavis changed to accord and reported same through the Yellow card scheme.
It's totally unacceptable to be told to take antihistamines for side effects also omeprazole is not good to take unless you truly need it.
Tell GP you cannot take levothyroxine tablets as they make you very ill..
Do tell accord via yellow card scheme.
Let's know how you get on with liquid levothyroxine 😊🤔
That's wonderful, must be a good endo have only seen one endo in 14 years, and they were no use.
Had a telephone appointment with my GP today and he is ordering the liquid levothyroxine for me to trial. So I am very pleased. I just hope it is suitable.
Mannequin18 @How long have you been on levothyroxine. I just wanted to ask because if I had had any knowledge at all in 2011 about the thyroid I definitely wouldn't have taken levothyroxine at that time.
I had never taken vitamins so I would have had vitamin blood tests done 1st. I would have tried to have optimal vitamin d3 B12 Ferritin and folate before having a repeat thyroid blood test.
Unfortunately, when GP told me I had underactive thyroid in 2011.
1....I had zero knowledge of thyroid
2....I had a horrendous bereavement in 2010
3. House was up for Sale in 2011
4. My periods had just about ceased in 2011 (4 Monthly)
5 Before taking levothyroxine I had a thick mane of hair, was active, had a Social life and cannot think of a symptom I had at that time connected to Hypothyroidism.......I never put on weight.
6. After taking levothyroxine for 'not a long time', I was always light headed, dizzy, fatigued, but, wasn't BEFORE..
UNFORTUNATELY I never made the connection between my new symptoms and taking levothyroxine- grief, a lot to deal with and menopause.
I have no doubt after taking levothyroxine coming up for 10 Years that my thyroid wouldn't be able to function without levothyroxine
I can relate to a lot of what you say. I have been on levothyroxine for 14 years. It was only discovered through a blood test. I had no symptoms. If I had know what was to come, i also would never have taken levothyroxine. It took 2 years to get on the right dose. And I put on 5 stone, even though I hardly ate anything. Zero appetite. I felt tired weak and generally malaise. Then I got autoimmune PA. Then I got glaucoma. Now I have tested twice positive for Lupus.
I read somewhere that it can affect bones. I don't know how true that is. Do you take any vitamins?
I don't take any, as I don't know what I need. Wouldn't it be helpful to be able to go into a chemist and buy a test, not only for vitamins, but for everything else. Simple.
Yes, at the time my t3 and t4 were tested. Because the gp I had then used to explain everything. Every time I had a blood test done she would explain all the markers. But at that time I did not understand what it all meant.
I have only learned how it works by being on this valuable forum, with all it's knowledge and people, and all their experiences.
Mine was tested 14 years ago. I had a good GP, she discussed everything with me. I was lucky in that respect. The only thing I was not happy with was having to wait 3 months between testing. I was very ill for 2 years, until I was finally on the right dose.
No I can't. I was put on the usual 50mg to start with. And it was increased every three months, after a blood test, I think at one point it must have been 6 months before an increase. Because I was offered an emergency injection because of my levels. I ended up on 175mg.
This is what happens in this levo cascade of intervention. Because only TSH is tested you are only ever advised to increase your dose, and almost never to decrease it. TSH is not linearly reflective of low t4/t3. It can rise and fall in the course of the day, there is a clear circadian rhythm, which is more pronounced in some people and less in others. And particularly, it can increase following psychological stress - this has been demonstrated in a lab environment and also follows common sense - the body under stress suddenly requires more energy, the thyroid is stimulated to make more t4/t3 to address the body's energy needs in the short term. This state is transient, but if you test at the point in time when TSH is high, you will be put on medication ""to suppress TSH". The aim of treating thyroid patients should be to provide adequate T4 when this is not being produced by your gland. Instead, we get put on increasingly high doses with the aim of ""suppressing TSH". The dose is practically never decreased, as the "normal' range of TSH can be close to zero, so there is never an""indication" to lower the dose.
Over time with the high level of exogenous thyroid hormones coming in, our own thyroid just stops making them, and eventually atrophies. This is a frequently observed occurrence in those that actually take the time to measure thyroid volume by ultrasound in their patients.
ThyroidLadyLondon @Sounds like I need a thyroid ultrasound. No doubt by now (since taking 50mg levothyroxine since 2011) my thyroid will probably be destroyed/defunct. I had an increase (first time ever) about a Month ago to 7.5mls daily.
However, from what I read on here the thyroid cannot function properly until all vitamins are optimal ranges.
I have had private blood tests within the last 9 Months through Blue Horizon Medicals, Medichecks, Monitor my health etc. TSH always around 4, ft4 around 12 and ft3 around 3.2, high TPO AND TGAB?
Your TSH is a bit elevated but that isn’t why you should increase your levo dose.
What are your t4 and t3 readings? If you have adequate t4 and t3 and then you take a huge dose of levo in addition to this - no wonder you will have side effects....
You don’t sound to be having an allergic reaction, you sound to be overmedicated. And yes, they absolutely should check at the very least you t4 along with TSH but preferably also t3.
Ultimately the responsibility for understanding and managing your body is yours, not anyone else’s. The reason we take synthetic t4 is if our thyroid is not producing enough of its own. The only way to see if you have sufficient thyroid hormones - is to test the level of thyroid hormones in your bloodstream. TSH is not a thyroid hormone, it is a product of the pituitary gland. It can go up in response to psychological stress for example. Not because you don’t have enough thyroid hormones for your body’s needs. The issue with using TSH alone to set levo levels is that doctors will increase the dose when TSH increases (which it invariably does at some point) but they never decrease it back down when TSH is low. And so you end up in a perpetual cycle of only ever increasing your dose of synthetic t4. Over time this leads to atrophy of your actual thyroid gland and ultimately completely suppression of your endogenous thyroid hormone production.
I can't take that in, I don't really understand it all. I had a private test at one of the labs recommended on here, I think it was August last year. I was on 150mg of Levothyroxine at the time. And the results were normal, within range. Exactly the same as the one done at my surgery a month previous to that.
So I thought everything was ok.
Plus the only time I have had this reaction is when I have taken other brands of Levothyroxine other than Actavis. And that is what I am experiencing now. So that all adds up.
Surly my gp or the labs that do the tests know what to look for. If not we are all stuffed.
I can only go by what they test me for, because I don't have their knowledge.
I will only know if my symptoms subside on the liquid levothyroxine, that that is the right thing.
Oh, I forgot to say that I am autoimmune hypothyroidism, also autoimmune PA.
So I definitely have a thyroid issue. And what I have read about Hashimotos, is that it fluctuates, and can go hyper as well as the thyroid gland is destroyed.
So perhaps that is what is happening, I don't know.
Shocking to hear of people’s experiences, I started on 25mg of Mercury which I got on well with, my pharmacy then changed to wockhardt and I started to experience bad acid reflux. I tried to get back onto Mercury but no pharmacy’s had it available. I tried teva today and have been feeling terrible, headache, nausea, dry mouth and leg cramp. Not sure whether to carry on with it or stop.
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