Hi all, I haven't posted for a while, but have looked at the posts to see if I could help.My problem is, I have not been right on my levothyroxine since Actavis ceased their business.
The one I am on now, although I am not allergic to , has made me put weight on, and as soon as I have taken it I have to sleep. And my levels of TSH are 6.6. from results in February, and I have a doctor's appointment on the 9th of May.
I'm really fed up of taking levothyroxine.
Any help please.
Sounds like you are more than a little under replaced with a TSH that high, do you have any recent results for fT3 & 4?....which brand are you taking, how are all you other vits and mins looking?
Thank you for your reply.I did have a blood test in January. I'll have a look, not that I understand the results.
I haven't a clue what my vitamin levels are.
My vitamin D and iron were low last year.
I'll ask my doctor when I see her in May.
Thank you again.
If you pop your results with ranges up we'll give you advice, Dr's are happy with 'in range' when actually optimising is key for good conversion of T4 to fT3
How much levothyroxine are you taking
Are you still using Vencamil
You were previously on steroids, which lower TSH.
Are you no longer on steroids?
TSH should be under 2 as an absolute maximum when on levothyroxine
gponline.com/endocrinology-...
Graph showing median TSH in healthy population is 1-1.5
web.archive.org/web/2004060...
Comprehensive list of references for needing LOW TSH on levothyroxine
healthunlocked.com/thyroidu....
onlinelibrary.wiley.com/doi...
If symptoms of hypothyroidism persist despite normalisation of TSH, the dose of levothyroxine can be titrated further to place the TSH in the lower part of the reference range or even slightly below (i.e., TSH: 0.1–2.0 mU/L), but avoiding TSH < 0.1 mU/L. Use of alternate day dosing of different levothyroxine strengths may be needed to achieve this (e.g., 100 mcg for 4 days; 125 mcg for 3 days weekly).
Thank you for your reply.Yes, I am still on Vencamil of 150mc.
I'm not on steroids now.
I have a new doctor, hopefully she will listen to me.
I will take the information with me.
Thanks again.
I will post how I get on.
Your TSH is way too high. You need an increase with your medication. You should aim for a TSH lower than 2.5 and preferably around 1.00. Any TSH over 2.5 and you’ll have hypothyroidism symptoms. Keep an eye on your test results through Patients Access on the NHS site. If you haven’t got that asked the gp receptionist. Keep a close eye on vitamins D, b12, ferritin and folate they all need to be optimal also.
Thank you for your reply.
I have had problems now for the last five years.
The levo I am on now is Vencamil. and although i am not allergic to it, it is not doing it's job.
I have only felt well on Actavis. My TSH was. 0.45. I felt good.
I don't know what is going on. I had blood tests in January, and I have an appointment on the 9th May to discuss the results.
I am nearly 80, you wold have thought that this problem would have been sorted by now.
I just want to feel well again.
I don't want to get up in the morning, and i just can't shake myself into life. I just want to sleep.
It is not my age. i have always been active, this is not normal.
\
Please ask your gp to test TSH, t4 and importantly T3. Your t3 might be low. You can take t3 medication if it’s low. TSH over 2.5 is not good. It should be around 1.00. Best way is to get your bloods tested and repost on here. If your gp won’t do it then do it yourself through Monitor My Heslth on line. It’s cheap and quick. It’s a finger prick test. Maybe get someone to assist you. Also request b12, vit D, ferritin and folate are checked by your gp. It could just be a vitamin deficiency issue.
Thank you for your reply. I will request another blood test. Something is not right.
Definitely get a blood test. Then maybe alter your dose or request T3 if it’s low.
I have taken many different brands of levothyrox.
It took me years to find out, which symptoms are telling me, that I am under dosed or overdosing.
The symptoms are mainly the same in both cases.
I am 66 years old.
And have figured it out for me self.
If I have cold feet and can’t get out of bed in the morning, I need a drop of levothyroxin more.
( this usually happens, when I’m in hospital or unwell)
If I feel my heart beating in my throat, I am overdosing.
I get on well with this plan.
My doctor said, she is learning from me!
She prescribed me the medicine that comes in liquid form.
It seems to me.
The tablets are 25, 50 ,75, 100, 125, 150, 175, 200..
The drops are better to change according to your symptoms.
If you don’t want to wait until someone makes a blood test, then you have to absolutely watch your body for the symptoms.
These are confusing.
But, as I said, I figured it out for myself.
Thank you for your reply. I did try liquid, but I didn't get on with it.
And I forgot about the cold. I am in my thermals, socks, jumpers, trousers, and i can't get warm.
i have my electric blanket on in bed. I can't wait for global warming.
I liked Actavis too.
I’m on Accord now (also known as Almus via Boots). That seems ok for me.
I changed pharmacies and they assured me they would get Accord……..of course there came a time when they only had Mercury. I noticed within 2 weeks it not being as effective and also I started itching. 🤦🏻♀️
I’ve gone back to Boots now and am happier on their Almus (Accord).
I have the same problem, I am not getting on with most brands of generic levothyroxine and always have to get levo made by Accord.
I always put a note to the GP on my repeat prescription to say that I am intolerant to many generic brands and to put on the prescription 'please dispense levothyroxine by Accord'. That seems to work.😉
I struggle with generic tablets too. I have to have my prescription for Imigran (original Imitrix/sumatriptan) because the generic makes me very poorly. They still tried to take it from me on 2 occasions though. Honestly! If they had a full on painful migraine with 7 hours of vomiting they might be a bit more mindful when prescribing and even have some empathy for what we go through.
Technically, Accord (and Actavis before) are generic products.
Until recently, the only non-generic levothyroxine was Eltroxin. And that had originally been launched as a generic - only later branded. Furthermore, the brand Eltroxin has changed hands several times and there have been at least some adjustments to the formulation.
(To add to the picture, the Aristo Vencamil product is technically a non-generic.)
So complicated.
I’ve been ok with Actavis….now Accord.
I am also careful with versions of ibuprofen, which I try not to take too often. One company produced theirs in a pink tablet form. I refused to buy it as I have enough issues and decided that an added colour wasn’t worth the risk.
I have to be really careful with paracetamol. Can’t take it for even a mild headache or it sets off a bad migraine. My mum is allergic to paracetamol. My sister and my daughter are allergic to penicillin. Obviously something in our makeup that doesn’t like certain ingredients. But I expect many people aren’t good with some ingredients. It’s just that some react badly and others don’t.
It’s just another thing I have to watch out for. 😑
Thank you Lovecake. [love the name]. for taking the time to reply.
I agree with you totally. I am allergic to so many things, it doesn't always make sense to others. Paracetamol does not agree with me either. I take dispersable Asprin with a whole glass of water, to limit any stomach issues.
Acord makes me ill. i was happy on Actavis for 12 years. I have not been able to find anything that suits me the same.
Thanks again.
Yes, the trouble is that generics might have the same active pharmaceutical ingredient (e.g. levothyroxine), but they can differ in excipients (inactive compounds that help the bioavailability of the product). The composition of individual brands can mean, that you get on well with one, but not with others. It's a bit of hit and miss, but some doctors or pharmacists do not seem to grasp that different generics can contain different formulations that can lead to different effects or bioavailability in patients. 😢
Don't get me wrong!
Remaining on the same formulation can be important to essential. And I do my very best to manage it for myself. I was just picking up the specific point about our use of the words "generic" and "brand" or "non-generic".
Not that it matters here, but it can matter if you are asking prescribers and dispensers for what you want.
Thank you for taking the time to reply, and for your advice. Sorry for delay in replying, i have had problems with emails.
Thank you for your reply. Unfortunately Eltroxin is one of the levos that i am allergic to.
Sorry for delay in replying. I have had email issues.
That's awful.
When the pharmacist and the doctor didn't listen to me about how i was affected by different brands. One day when I was being affected, I went to see them to show them my neck. As it looked like a pizza topping. Not to mention the itching and awful pain.
The pharmacist wanted a letter from my doctor before taking any action.
Crazy. We shouldn't have to keep fighting for what is right,
It’s not right we have to go through it.
You’d think that pharmacists should know these things. And these days they are being used as a GP off-shoot for minor ailments. But quite frankly, unless the pharmacy was really not busy, I won’t use them as you can hear everything from their consultation room (well, the one nearest us).
It’s not great. But at least we can chat and learn on here. Take care Mannequin18
Actavis didn't exactly cease their business.
The gigantic and international Actavis sold off their UK generics division to a company which renamed itself Accord.
But they continued to supply levothyroxine under the name Actavis for some time. Eventually, they changed that to be supplied under the name Accord like the rest of their products.
At no point in this process, nor since, has there been any known change to the product. No change to listed ingredients, nor product licence number. A few members have said they think something changed. But most have not said so - including me.
Thank you. i have been through all of this before. something definitely changed because i got my usual reaction to levothyroxine that doesn't suit me. ie my neck looks like the topping of a pizza. and is unbearably itchy that goes up my face and into my eyes. As i have glaucoma as well, it's very scary and painful. I can only go on my reactions, obviously it doesn't affect everyone. Sorry for delay in replying, I've had problems with emails.
Exhaustion 
still feeling exhausted
Exhausted and in tears
Exhausted and frustrated 
collapsed with exhaustion
