Hello all, 3 weeks ago I started taking 25mcg of Levothyroxine, TEVA brand. (I am already ACTH deficient and taking HC x3 daily and now endo suspects I am becoming TSH deficient - T4 level has been steadily declining, and increasingly symptomatic of hypo).
I have read people saying that they really didn't get on with the TEVA brand, and just wanted to clarify what is meant by that? For a week now I have felt really low and teary, and extra tired, and yesterday and now today too I have had what I think is a panic attack. I hate feeling like this, and I want to know if it's the Levothyroxine in general, or perhaps the brand. I'd be grateful for any insights. Thank you.
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luckyed
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Hi Luckyed, personally I'm totally intolerant to TEVA and refuse it if offered by the pharmacy.
Actavis, Wockhardt are good and Mercury Pharma okay.
Maybe get a blood test for Vitamin D... I take it daily.
Also maybe try taking thyroxine last thing at night (as you turn out your light). This will allow better absorption and you'll be ready for the morning 🙌
Thank you Fiona8. I have spoken to the pharmacy and they say they can get Alliance for me, so I will give that a try.
When you say you're intolerant to Teva, how does that manifest, if you don't mind sharing? I'm feeling like I'm not on this planet, as well as the anxiety, and I feel slightly queasy and have heartburn, and feel like I have a hangover!
I am already taking Vit D daily, as I can't seem to hold on to that! I have read about taking it at night - thank you for your help.
I'm sure others will have better knowledge than me but 25mg is a starter dose. So usually, you start on that, then get tested, then add some more. I ended up on 100mg which seems right for me. You may find your symptoms dont improve or get worse if you are undermedicated
HI Annoynomice, thank you for your reply. My endo said I'm to have 25mcg for 8 weeks, have a blood test, then maybe increase to 50mcg. Another 5 weeks feels like a long time to feel like this, I didn't feel this bad before I started on Levothyroxine!
Hi luckyed - it would be helpful if you could post some blood test results, as without them it will be difficult for anyone to advise you specifically.
In more general terms anxiety is a common symptom of hypothyroidism so as you are on a low starter dose, you probably won’t be feeling any benefits yet. Personally I found Teva made my anxiety a lot worse and now won’t take them.
I hope you start feeling better soon - anxiety is miserable but you are not alone x
Thank you LunaMa. My latest results are: T4 10.8 (range 10-18.7), T3 3.6 (range 3.5-6.5) and TSH 0.53 (range 0.55-4.78) (but I have been told to ignore my TSH levels because of my Pituitary issues!)
I definitely didn't feel this bad before I started taking the Levothyroxine, and my endo did say to me that if it didn't agree with me one of the warning signs would be feeling over-anxious. So I'm wondering whether it's Levothyroxine in general, or this particular brand. I have just spoken to my pharmacy, and they are going to dispense Alliance brand for me to try. Thanks for your support.
Assuming that the T3 and T4 results are FT3 and FT4, then I’m not surprised you feel anxious - I was a blubbering wreck when my levels were that low! Having said that I’m new to this (was only diagnosed earlier this year) and don’t understand about the impact of the pituitary issues. Hopefully someone like #greygoose will pop by with some relevant thoughts. All the best x
If you felt better initially it could well be your body is crying out for more. It sort of rebounds but you have to wait out the 6 weeks unless you have a particularly maverick GP who’s willing to take a punt.
Hi luckyed I refused Teva after it made me feel anxious and gave me joint pain. I try to stick to avtivis or mercury pharma I’ve found boots chemist offer mercury pharma
Looks like someone has given you some bad information.
Alliance is a distributor owned by Walgreen Boots Alliance. So far as I am aware, there is no levothyroxine product on the UK market under the name Alliance.
However, they might have meant Almus? Almus is a brand also owned by Walgreen Boots Alliance. Theoretically, the actualy product could come from any licensed manufacturer but (so far) it has always been Actavis product in a card outer branded Almus.
If you see a packet, look on the lower long edge and it will say the Product Licence holder is Actavis. (Though this might get updated to Accord who own the Actavis branding for levothyroxine in the UK.)
Actavis is only available in 50 and 100 microgram dosages. If your prescription requires a 25 microrgam product, it will have to be Wockhardt, Advanz (Mercury Pharma) or Teva.
Thanks so much for your help. I'm hoping it will be ready today, but it maybe a day or two, so meanwhile I guess I keep taking the Teva, rather than go without? Really hoping a different brand will make a big difference.
For me TEVA is brilliant, the only one that I can stay awake on. My conversion to t3 is higher than other makes for the same dose. (As proved by blood tests). I often wonder if that is the problem for some people and that they work so well they can make people hyper which can cause anxiety and they don’t realise as they only have TSH or t4 bloods. On TEVA my t3 is above 5 on other makes it has rarely been above 4
I have to say I have been better on Teva , but I have also been sprinkling Engivita it contains B12, on my meals and milled linseed on my morning porridge ,and in the winter supplement with vitamin D . I have no idea if it is only placebo , but it seems to work for me . It will probably take a little while to get used to levo as your body says 'wtf' or mine did
Thank you greymatter. I will give anything a go to feel better! I will hang in there if I'm on the right track, but I seem to be feeling worse and worse :0/
I don't tolerate Teva levo either, apparently it's got mannitol in it. I get terrible heartburn on Teva so I always refuse the Teva brand at the pharmacy.
There's a lot your doctor won't tell you about when you start thyroxine because 1 they don't have a clue 2 everyone is different and we are hypothyroid for many different reasons. I learned the hard way I had all sorts of problems with heart rate, anxiety, aches and pains when I started. I had problems with low blood sugar too. I've had to raise mine very slowly has taken me a year to get to 62mcg.
Yes, my endo did make it all sound quite simple! What I hoped was going to be a solution to make me feel better now feels like the start of another journey! That's interesting that you have had to raise it slowly like that. Thank you for sharing.
I had a bad episode of anxiety, teariness and ferling very grumpy at the same time I was taking Teva. I will never know if it was a virus or the Teva or both but I refuse Teva if the pharmacist offers I've never felt like that since.
Apparently, it's the only thyroid medication that is good for lactose- intolerant people.
Thank you for your message HealthyEmski. I will definitely be refusing Teva, never want to feel like this again. Wockhardt is coming, hopefully today 🤞.
Hi, a while ago, probably a year ago, I was given Teva. I had the worst anxiety. I have never felt that before or after that episode. I read that a lot of peop,e had the same effects, my doctor has put on my notes I am not to have teva. So talk to doctor. Good luck
Hi mado, thank you for your reply. It's encouraging to hear that others have felt the same. The pharmacy are getting me wockhardt brand now, so hoping for speedy improvement. Do you remember how long it took to feel different when you stopped the Teva?
How long have you been taking hydrocortisone? This is associated with anxiety.
My mum had Addison's disease and suffered anxiety after taking HC. I also had a nightmare time when I was given high does hydrocortisone for my thyroid eye disease. It gave me panic attacks that I have never recovered from. I still get them. Also can add that other thyroid eye disease sufferers are given hyrocortisone in pill form and when tapering off they all suffer with anxiety with or without panic attacks. This off course is not to say that TEVA brand thyroxine may be the culprit. Tricky.
Thank you shambles. I have been taking hydrocortisone for 8 years now, and have been fine on it mostly. Odd periods of anxiety/stress, but normally I can put it down to illness lowering my system, or just busy life with 2 small children! Nothing remotely comparable to what I have experienced in the past week. And never panic attacks like at the weekend. But perhaps the combination of the 2 drugs has had some affect?? Thank you for your thoughts. I'm sorry to hear what you've been through.
Hi marvalrus, they said it was most likely an auto-immune attack on my pituitary gland, that affected just that function, but they weren't really sure. I think I can trace back when it happened to when I got a back-to-school virus (used to teach). I was signed off for 3 months with 'post-viral fatigue', although never really got back to 'nornal', and was only diagnosed 4 1/2 years later, after lots of knocking on GP doors with constant illness!
Have you ever had your adrenal glands scanned by MRI or CT? I didn't have ACTH either. Ten years later, I had an adrenal gland removed because it had a small growth on it. The ACTH resumed function directly after surgery. But because the remaining adrenal gland had gone on so long w/o ACTH it atrophied and is still not normal, so I do take a bit of Cortef. What are your cortisol tests like?
Oh wow, that's really interesting. I remember asking back when I was diagnosed whether, as my adrenal glands were not the problem, an ACTH tablet was available, but they said sadly not, and that my adrenals most likely wouldn't respond anyway, as they would have lost the memory of what to do upon the ACTH prompt.
No, I've never had a scan of my adrenals. I don't think my Cortisol is routinely checked, they tend to focus on the pituitary functions. But the last time I have a record of it being checked it was <30 first thing before taking my first dose of Hydrocortisone. I've had a couple of day curve tests, and it seems to go up pretty high after my midday dose.
Yes, it kinda is. LOL Certainly not like having 2 of them, but it does do "something". If you only knew how many doctors I saw who passed all this off, you wouldn't stop shaking your head. 2 of them were DC's 'finest' endos. Pathetic morons IMO. Do you still have normal menstruation? Mine completely went out of commission at age 40, way before it's time. Have you ever had your brain scanned, like for the pituitary specifically? If not, you should def advise your doc that you want a scan of each. Start w/the adrenal glands. This could literally be the cause of no ACTH. They shouldn't just pass off your pituitary being faulty w/o scanning it. Have you ever had a test where they simultaneously tested your ACTH and Cortisol when you not on Hydrocortisone, like when this all began? Did you have any cortisol from that test?
Hmm, yes, it's frustrating when you don't feel like the "experts" are exploring all the avenues. I've tried to be so proactive with it all - constantly asking, what about this, what about that - after just feeling like nobody was really looking at the whole picture. But it's exhausting! I even went privately, thinking if I paid someone to care, they might actually go further, but that was a complete waste of time and money! Back to the good old NHS!
Yes, normal menstruation (have had 2 kids), am 41. I had a pituitary MRI at the beginning of the year and it was all normal apparently.
I'm not sure about whether I've had both ACTH and cortisol tested simultaneously recently. Again, I don't think they test for ACTH anymore. I had both done when I was first diagnosed, and that was cortisol 22 and ACTH <1. I'll see if I can can get them to scan the adrenals...
So here is the key: How can you have any cortisol if you have no ACTH? Anyone w/<1 (non-detectable) ACTH shouldn't have any cortisol. So where's the Cortisol coming from? An adenoma on the adrenal cortex. The Cortex (outer layer of the gland) is primarily where Cortisol comes from. One of them may have a small growth, benign, and its secreting cortisol whenever it wants. Could be a lot could be a little, could be normal. But that lack of ACTH is putting your good adrenal gland to sleep, esp in the cortisol dept. It becomes atrophied. If your pituitary was found to be normal, you most likely have an adrenal adenoma. After 10 years of all the exhaustive doctor visits just like you describe, finally an endo agreed it was the problem and needed to be removed. After it was removed everything normalized. My physical body normalized. This could have been going on longer than I realize, but it wasn't until I was 42 that it all became apparent. Had it removed when I was 50. See if you can get your adrenals scanned. Don't be scared to do this. It is well worth knowing.
Yes, I had never considered that (and apparently no one else has!). So thank you for pointing this out. I will definitely see if I can get a scan of my adrenals. My next endo appointment is booked for January, so I have plenty of time to prepare my speech!! It would almost be a relief if this is the case, it might make more sense of everything. And it would be amazing to feel more "normal ".
You are so very welcome. When I saw you say you had no ACTH, it really struck me. I personally went through years of not understanding this simple equation. My family physician even looked at me one time and said "Well, if there is no ACTH, how come you have cortisol?" I said "I don't know, you're the doctor, you tell me!" One of the "best" endos said "Eh, labs always seem to screw up the ACTH test. You have cortisol, so it must be a bad test." I said, "But what about this adrenal adenoma?" "What about it? They're normal. We find them all the time." I was NOT satisfied with that answer. So I said, "You do blood labs here, would you re-test it and make sure it's done right?" "No. Ma'am, you're in menopause and you need to just face it." Wow, I was so pissed at him from that very moment. So I said, I can see you don't know what you're doing. You probably don't even know what an adrenal gland does. And I walked out. I went through this same scenario for more years until one day I had to go to the ER for an allergic reaction. I'm not allergic to anything. The doc gave me prednisone and we had a long talk and he referred me to an endo he knew of. Yep, she was the one that said, Yes, the adenoma is secreting cortisol whenever it wants, however much it wants. Sometimes high sometimes low and it's giving you all the ups and downs that go with it. She ran one more test, Adrenal Vein Sampling and confirmed that gland, when prompted was secreting a ton of cortisol but the other one just did a tiny bit. It's because the good one never had any ACTH to prompt it to do anything. The pituitary sensed for all those years that there was enough cortisol, so no reason to secrete ACTH. Once it was removed ALL of it resolved, except for the fact that I do have to take a low dose of Cortef everyday. The remaining gland stayed inactive for so long, it had atrophied. Don't think it'll ever be optimal. Ask your doc when you go, "If I am not secreting ACTH, how is it that I have cortisol?" I would LOVE to hear what the doc says to you! LOL Please let me know. I have a pretty good suspicion you have an adrenal adenoma.
Thanks so much, I'm really grateful. It's so frustrating that it took so long for someone to open their mind enough to think outside the box for you. I too have been in front of that endo, who actually held his hand up me and repeatedly said, "you're fine", every time I tried to speak or ask him something, just cutting me off. I left in tears! And have never seen him since, needless to say!
I will indeed keep you posted of what happens. Watch this space!...
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