Hi all, I've been having issues with getting the right brand of levo that works for me.
When I was first diagnosed I started taking 25mcg by Wockhardt. This dose was too low for me but I did start to feel better.
I was then upped to 50 mcg but this time the pharmacy gave me a different brand called Almus. I learned that Wockhardt is not doing any other doses so I just accepted new pills thinking that it will be fine - it wasn't. I felt very bad when taking this brand, almost from the first day.
Went back to doc and I was raised to 75 mcg. After mentioning the issue with Almus my doc prescribed 25mcg but for a lot of boxes and asked me to just take 3 pills. I was then able to get Wockhardt.
I started feeling very well again. My TSH also finally reached a good level (0.3 mIU/L). But then, I started to worry about my prescriptions going forward.
It it seemed like it would be a bit annoying, having to prescribe so many boxes of 25mcgs. I'm not originally from UK so I don't know if there are any limits to how much you can prescribe at one time but my doctor suggested to get me a final prescription for Wockhard for 3 months supply and asked me to go abroad in the meantime to get the brand that they usually recommend.
I continued taking Wockhard - everything was ok. Once I run out, I bought those pills from abroad. They are called Euthyrox N 75. At the beginning I didn't see any difference but then, slowly, I started feeling slightly worse and getting some of my symptoms back.
I have not seen my doctor yet. I have a blood test from a month ago that showed slight rise in TSH (0.9 mIU/L). Since that result, I started feeling even worse so I'm suspecting that my TSH is still going up. I'm currently waiting to get new results.
This brand is not making me feel as bad as the Almus (that one was horrible!) so I'm not sure if this is the issue with fillers or maybe absorption (my FT4 is lower on this brand then on Wockhardt).
This is my first year of taking levo and I've heard that seasonal changes may affect your TSH level. so maybe that's what's happening?
I'm really not sure what to do now. I'd ideally like to go back to taking wockhardt but it would mean having to constantly see my doctor for these weird large prescriptions (I'm doing it all privately, not on the NHS so it would be expensive).
I've seen people here saying they are taking Wockhard on larger doses. Could you please let me know how are you able to do it? Are you maybe taking the liquid form? I've seen that these are also available - are they as good as the pill? Or maybe there is a way to get these prescribed in easier way?
thank you!
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Mochi039
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Hi Mochi039,It can be a long battle to get the right dosage and a brand of Levothyroxine that works for you.
From my experience there are two issues:
1) It could simply be the brand of Levothyroxine. I've heard of Wockhard but don't recognise the other ones you mentioned.
I have issues with Teva brand which really doesn't work for me.
2) If your underactive thyroid condition is Hashimotos Thyroiditis, an autoimmune condition, it could be that your immune system is still destroying your thyroid tissue. This happened to me and I had to fight to be referred back to an Endocrinologist to get my dosage raised. My TSH results were anomalous and still are. I was only diagnosed when a locum GP did a thyroid antibodies test.
The upshot is, you know yourself if you're feeling well or symptomatic. The TSH test isn't the be all and end all. Your GP should listen to you and either help you to get the right tablets from the pharmacy or refer you back to endocrinology.
I'm not sure what is the cause of my hypothyroidism. It was never fully diagnosed. My gynaecologist just treats me based on symptoms + TSH level. I'm planning to see endocrinologist in the future for another opinion.
I'm also planning to test for antibodies and have another ultrasound of my thyroid. My mom was diagnosed with Hashimotos many years ago so personally, I'm thinking that it might be the same for me. For now though, the previous doctors said that it doesn't look like it but they also refused to treat me with levo so I don't know how much I can trust them.
I'm hoping that I'll feel a little better once I'm back on Wockhardt. I've been also wondering if I'd be able to get T3 medication on top of my levo but I never talked about it with my doctor so I'll have to check.
The good thing is that even though things are not perfect right now, last year I was like a zombie so I do feel much better overall when taking any levothyroxine.
I just know from these months of experimentations with doses that I can feel even better so I'm desperate to get back there again.
Hi Mochi039,It does take a while to get back to your normal self. When your thyroid isn't functioning correctly you don't sleep well and your body doesn't rebuild itself as normal.
You lose your confidence too. I was too exhausted to work or keep up with my friends. I was misdiagnosed as having anxiety and depression for many years. Thankfully I never took the antidepressants my GP offered or the hysterectomy!
Seeing a good endocrinologist is very important.
Getting the right medication that suits you is also important.
I have found that some Levothyroxine brands don't work for me.
Keep pushing for the right treatment, it'll take a while to get back to normal. Eat well and try to exercise. Be good to yourself and I hope you feel much better soon.
The official view is that all the levothyroxine products are equivalent. However, that is clearly not the case.
If you felt wrong on the Almus (which is actually Accord product), please put in a Yellow Card report.
It is quite bizarre for a UK doctor to suggest you buy from overseas! Even a private doctor is expected to prescribe medicines with UK licenses except where another product is required.
Merck Euthyrox is very widely distributed round the world (sometimes under different names). Some people have not got on with it since they changed the formulation from using lactose to mannitol - but many are fine with it.
There is no limit laid down on number of packs you can be prescribed. And writing "3" rather than "1" is hardly a major issue for a prescriber! But doctors do generally seem to write prescriptions for the smallest number of tablets.
And Wockhardt has had lots of availability issues for many months, possibly longer.
Wockhardt has an official NHS price of £1.76 a pack.
Liquid forms are very expensive. Something like a hundred times the cost of tablets - and that assumes you only take one 5ml dose a day. And would rarely be prescribed unless there has been a clear history of issues.
helvella's medicines documents (UK) can be found here:
helvella - Thyroid Hormone Medicines
helvella has created, and tries to maintain, documents containing details of all thyroid hormone medicines licensed in the UK and, in less detail, many others around the world. There is now a specific world desiccated thyroid document.
I highly recommend viewing on a computer screen, or a decent sized tablet, rather than a phone. Even I find it less than satisfactory trying to view them on my phone.
helvella - Thyroid Hormone Medicines - UK
The UK document contains up-to-date versions of the Summary Matrixes for levothyroxine tablets, oral solutions and liothyronine available in the UK. Includes injectables and descriptions of tablet markings which allow identification. Latest updates include all declared ingredients for all UK-licensed products and links to Patient Information Leaflets, Dictionary of Medicines and Devices (dm+d), British National Formulary, NHS Drug Tariff, etc. PLUS how to write prescriptions in Appendix F.
Also includes links for anti-thyroid medicines (but not product details).
Yes, that might seem strange but this doctor is from the same country as I am. I think they just wanted to give me some other option. They also mentioned they had patients before that moved here, changed meds and then their TSH started going back up so they are always offering to give them a prescription for their old medicine if they are able to fly and get it.
Since you are saying there are no limits, I will try to talk to my doctor. I'll ask for a change to wockhardt. My only concern is the availability of this brand. My pharmacy usually has to order them for me but they have never said anything so maybe it'll be fine. I'll keep my boxes of euthyrox as emergency supply.
Thank you for providing the list of available brands. I'll have a look at that. I'll also try to find similar one for my own country to see what are my other options.
Many people here are trying to have the same brand of levothyroxine tablets and it can be sometimes difficult to get a specific brand, as GPs usually do not seem to recognise that there is an issue. However this is clearly outlaid in the prescribing information, so GPs should list a brand on the prescription that the patient can tolerate:
So if you have issues with a certain brand or brands, you GP should issue a prescription for the brand you tolerate, and if that is 3x 25mcg tablets in your case, that should be it!
It could also be, that you have not reached your full replacement dose, as your thyroid will work less and less over time and 75mcg is still a smallish dose. A full replacement dose is 1.6 mcg per kg of body weight, so for someone weighing 63 kg, they would need 100 mcg levothyroxine (some might need more, some less - just an approximate guidance).
Does your GP dose by just measuring the TSH? You need to see your T4 and T3 levels to get a clearer picture of how your replacement is going. Even if your TSH and your T4 are fairly okay, your T3 might still be low and that can cause you symptoms.
Also, important to make sure that your nutrient levels are optimal, many patients are deficient in key nutrients such as iron, folate, Vitamin B12 and Vitamin D (can be privately tested). Only if these nutrients are at optimal levels, they can work together with your levothyroxine and help you feeling better.
Thank you, I'll try to ask my doctor to prescribe the other brand if possible from now on.
I'm being treated by my gynaecologist. She diagnosed me based on my symptoms and TSH result. I'm not sure what is the cause of my hypo. I'm planning to see another endo for 2nd opinion in the future.
Even when on Wockhardt not all of my symptoms went away. I usually feel the best few weeks after starting new dose. Afterwards, this best phase slowly passes (but never completely, there is always some progress). I will be asking my doctor if there's any chance I could get on t3 medication but I'm not sure if they will be allowed to prescribe it (they are gyno not endo specialised).
Here are my results including the newest one form today. Unfortunately only few have T3 result included:
Before levo:
TSH: 8.68 mIU/L (0.27 - 4.2)
FT4: 15.6 pmol/l (12.0 - 22.0)
After 25mcg dose (Wockhardt):
TSH: 4.60 mIU/L. (0.27 - 4.2)
After 50mcg dose (bad one - almus):
TSH: 3,590 mU/l (0,270 - 4,200)
After final 75 mcg dose (Wockhardt) (May this year):
TSH: 0,270 mU/l (0,270 - 4,200)
FT4: 19,30 pmol/l (12,00 - 22,00)
FT3: 4,34 pmol/l (3,10 — 6,80)
October, 75 mcg (Euthyrox):
TSH: 0,880 mU/l (0,270 - 4,200)
FT4: 18,40 pmol/l (12,00 - 22,00)
FT3: 4,28 pmol/l (3,10 — 6,80)
Today:
TSH: 0.48 mIU/L (0.35 - 4.94)
FT4: 18.7 pmol/L (9.0 - 19.1)
FT3: not tested
I've been tested for other things in the past. I was deficient in Vit D, folate, iron, ferritin. My liver result came back high for ALP (not sure what that means). My cholesterol came back high first time in my live.
I've been supplementing since I was on levo. I had iron injection in the summer because I wasn't absorbing from the supplement.
I was tasted for almost all of the above last week and everything came back in the norm, including b12. I only don't have a result for cholesterol. My ferritin is now above the average.
I also had new test done called Plasma C reactive protein. It came back high
9 mg/L (< 5)
This is all I have for now. Thank you for your time and previous reply. Would be great if you could have a look at these and let me know your thoughts.
Iron supplements are not advised with Levothyroxine as they bind to it and carry it out of your body making it less effective.
I was advised to take Calcium supplements, which can do the same thing.
If you really have to take iron or calcium, I was advised to take it at the opposite end of the day to when you take your Levothyroxine.
Many years ago when I was becoming ill and GPs failed to diagnose me; blood tests showed I was deficient in iron, B6 and B12. I bought my own supplements and it's possible that taking these masked my symptoms when subsequent Drs did blood tests.
When I finally saw an Endocrinologist, he advised that I was deficient due to absorption problems caused by the undiagnosed hypothyroidism. I was advised to take vitamin D to help absorb nutrients from food. Also to take the vitamin D at the opposite end of the day to the Levothyroxine.
Supplements can have negative interactions with Levothyroxine so get advice before taking them.
If C reactive protein is high, that means you have inflammation - somewhere.
And, when you have inflammation, that can cause ferritin to rise. It is known as an acute phase reactant. (Which wouldn't mean anything to anyone who doesn't already know the term.)
But that increase in ferritin sort-of isn't a real increase - it will drop again when the inflammation is resolved.
FT4: 18,40 pmol/l (12,00 - 22,00) - 64% through the range
FT3: 4,28 pmol/l (3,10 — 6,80) - 31% through the range.
The results indicate that your levels are still low, especially your T3 and you should have an increase in levothyroxine. It also indicates that you might be a poor converter of T4 to T3, hence your T4 value is much higher than the T3.
New results (I assume on same dose)
FT4: 18.7 (9-19.1) - 96% through the range
I noticed that your T4 has gone higher (if the lab range is correct), was the test done fasted without levo before the test? and is now at 96% through the range. Shame, that no T3 was measured, as it would have been good to see if there has been any changes, but I suspect that the T3 is still low and hence you have symptoms.
Even if your nutrient results came back as 'normal', it does not necessarily mean that they are optimal for you and you might need higher levels to feel better and to help with the absorption and conversion of levothyroxine. For example, a Vitamin D level of 60nmol/l is considered normal, but many patients need a level of at least 80nmol/l Vitamin D or even above.
Your low T3 is very likely the reason for your elevated ALT and also for your high cholesterol. ALT is a liver enzyme involved in lipid (fat) metabolism. If you do not have enough thyroid hormones, you lipid levels will rise (cholesterol) and the liver has to produce more enzymes to deal with it, but cannot clear the lipids effectively due to the lack of hormones. As a result you lipids and ALT levels will rise.
I think you need to test your T3 levels and see where they are. An increase in levothyroxine might be possible, but I doubt that this will have much of an impact on raising your T3, so you might have to think about adding T3. This will get your T4 levels a bit down down and will raise your T3 levels up. However, T3 therapy can only be initiated by an endocrinologist.
Your CRP is definitely high, which points to an inflammation. It could be connected to the raised ALT, as your liver has to work quite hard, or it could be something else, but your GP / doctor should investigate this further.
This was a different lab that has a different reference range for some reason. So the result is almost the same but it looks higher because of the range. The only time my FT4 was higher was in May when I was still on Wockhardt.
I always do my tests in the morning, fasting, before any meds. I also try to pick the same/similar time slot if possible.
My Vit D is at 116 nmol/L (Normal Above 50). My ferritin is at 240 ug/L (Normal 15 to 150). Everything else is mostly in the middle of the range. All of my results improved a lot when comparing to those from January. I always had issues with Vit D even when supplementing. This is the highest it has ever been for me and I don't even supplement right now.
I also re-checked my liver tests. I'm not sure if I wrote something wrong but my ALT is normal. It was my ALP (Alkaline phosphatase) that was high. But now I see that this one is also back to normal (it was high on 2 tests I've done earlier this year).
I'll be repeating my blood tests next month. I'll make sure to include T3 and cholesterol. I also wanted to check my antibodies again because I've only done them once and it was more than a year ago and there was one that came back slightly elevated (doc said it's not high enough to diagnose Hashimoto's). But I think I should keep an eye on these especially because my mom has Hashimoto's.
For T3 I have some additional historical results from few years ago. It was almost always around the same value so you might be right that I'm not converting very well.
In 2019 I saw my gynaecologist for the first time. At that time my results were:
TSH: 3.987 mIU/l
FT4: 11.74 pmol/l
FT3: 3.94 pmol/l
This was the first time she mentioned that I might be hypo and offered me to try levothyroxine. I declined because I only had mild symptoms. I wish I had listened to her back then because my condition has only gotten worse since that visit.
Thank you so much for your detailed replies. I really appreciate that. I've had a feeling that I might have issues with T3 but it is always nice to see that someone else is seeing similar thing. I'll try to find a doctor that will have a look at these results and hopefully I'll at least get to try how I feel with extra medication.
Your Vitamin D level is good, but your ferritin is high, but that is due to your CRP being quite high, as inflammation raises ferritin levels.
Its good that your liver enzymes are back to normal, but your high cholesterol level is definitely due to under-treatment, as I have explained above. And your low T3 is very likely the culprit.
It will take a while until you reach your level of thyroid medication where your symptoms disappear. And remember, a full replacement dose is 1.6 mcg per kg, so unless you are petite, you will most certainly need more. I weigh 58kg and I take 100 mcg of levothyroxine, only on this level I feel well.
Changing labs might have influenced the results as different labs have slightly different assays, might be worth repeating a thyroid panel test that includes TSH, T4 and T3 to be sure.
I think the ferritin is this high because I had two iron injections in the summer. I had iron deficiency anemia last year and we couldn't get it treated with supplements. I had my blood works done before injections and my ferritin was at 16 ug/L.
I only had CRP done this one time but I recently injured my muscle during exercises so maybe that's related.
I thought that you only need full replacement dose if you don't have thyroid or it's not working at all? I was told that my thyroid is in the healthy size right now although on the smaller side (but it was the doctor that refused me any treatment so again, not sure if I can trust her judgment).
I was 111kg when I started levo in January. I'm now 99kg. This would mean that I need 150mcg of levothyroxine?
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) Aristo Vencamil.
Lactose free brands of Levo
Different makes of Levothyroxine
Real issues with brands
levo brands!
Two different brands.
