Problem with liquid levothyroxine?: Hi, I was... - Thyroid UK

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Problem with liquid levothyroxine?

dizzy864 profile image
27 Replies

Hi,

I was prescribed liquid levo in July last year. I have been much better on it than I ever was on tablets. I have reduced my liothyronine from 60mcg a day to 47.5mcg as I became hyper.

I have always had a lot of head aches but they have become more frequent and more severe over the last few months. It's reached the stage now that I always have a headache and they are quite severe as well. I have been suffering with long covid for a long time and I put the headaches down to that.

I am now, hopefully over long covid after almost two years but the headaches have got worse.

I have always had Zentiva liquid levo. - It's not listed on the Thyroid UK site!

It's PIL states that it contains Glycerol, " which may cause headaches, stomach upset and diarrhoea." I've actually been very constipated for some time!!

I've looked at the different options on the Thyroid UK site. Wockhardt seems to be the only option that does not contain Glycerol ( apart from Ethypharm and Roseway which are both special prescription,)

Has anyone else had a problem with Zentiva? Has anyone else tried Wockhardt?

Do Zentiva and Wockhardt cost the same or will I have a problem with my gp if I ask for a change?

Thanks for your help, it's much appreciated.

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dizzy864
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27 Replies
SlowDragon profile image
SlowDragonAdministrator

helvella has an in-depth list of different brands levothyroxine available including ingredients

Suggest looking on his lists - via his profile page

Other members who take liquid levothyroxine hopefully will comment

Eg McPammy

dizzy864 profile image
dizzy864 in reply to SlowDragon

Hi, Thanks for that. I should have included that I currently take 125mcg / 5 ml oral soltion. It looks like that's why I was given Zentiva - they make a 125. I really don't want to reduce levo as I am absorbing it now.

helvella profile image
helvellaAdministratorThyroid UK

Creo was acquired by Zentiva some time ago. Their products were re-branded from Creo to Zentiva.

That is stated on my medicines document:

helvella - Thyroid Hormone Medicines

I have created, and try to maintain, a document containing details of all thyroid hormone medicines in the UK and, in less detail, many others around the world.

From Dropbox:

dropbox.com/s/wfhrlmb5983co...

From Google Drive:

drive.google.com/file/d/12N...

The link to Creo on Thyroid UK is here:

thyroiduk.org/if-you-are-hy...

dizzy864 profile image
dizzy864 in reply to helvella

Thanks for that.

helvella profile image
helvellaAdministratorThyroid UK in reply to dizzy864

For anyone else, Wockhardt use propylene glycol instead of glycerol.

Star13 profile image
Star13

I started off with Zentiva but then got given whatever they had. I was sceptical at first as I didn’t like the taste and it had taken me awhile to get on to the liquid, having suffered side effects at first. I had to titrate slowly up to my current 100ml/5ml dose. I am currently taking TenPharma and I honestly don’t think there is much between them. You say you are on 125ml so that might be an issue for 1 -5ml spoon. If you use a syringe it’s easy enough to take the 125ml that way.If you are having constant headaches you may have developed a chronic headache condition and it’s nothing to do with the meds. You may need a referral to a headache clinic to get prescribed an appropriate medication for the type of headache you have. I’d advise you start doing a headache diary daily so you can plot when it starts and the intensity. This will help them diagnose much more easily.

dizzy864 profile image
dizzy864 in reply to Star13

Thanks for your reply. I never had any problems making the change to liquid other than becoming hyper and having to reduce liothyronine. I do some times have problems swallowing it - it makes me wretch for quite a time and leaves my throat sore. I don't know why as it's only fairly occassionally. I want to assume it's the levo causing the headaches as there is a warning in the box. If a change to something without glycol doesn't help then I'll persue other avenues. I was concerned that I was not monitored in any way - probably due to the timing and the pandemic. I had to reduce lio completely on my own - maybe the best way!!

RedApple profile image
RedAppleAdministrator

helvella wrote 'Wockhardt use propylene glycol instead of glycerol'

I looked up propylene glycol to find out more about it. It's used in all sorts of things, from medicines to vaping liquids to antifreeze. en.wikipedia.org/wiki/Propy...

Of particuar interest, I thought, was this: 'Propylene glycol occurs naturally, probably as the result of anaerobic catabolism of sugars in the human gut. It is degraded by vitamin B12-dependent enzymes, which convert it to propionaldehyde.[71]'

en.wikipedia.org/wiki/Propy...

helvella profile image
helvellaAdministratorThyroid UK in reply to RedApple

Thank you for that! Interesting. I also note this from the Wiki article:

Propylene glycol, glycerin, or a mixture of both, are the main ingredients in e-liquid used in electronic cigarettes. They are aerosolized to resemble smoke and serve as carriers for substances such as nicotine and flavorants.

(Glycerin is also known as glycerol.)

dizzy864 profile image
dizzy864 in reply to RedApple

Tanks for that. It's very interesting. I can't understand why they would make a medicine with something that may cause headaches.

RedApple profile image
RedAppleAdministrator in reply to dizzy864

Everything has the potential to cause a side effect in some people. We're all individuals and I suspect it's nigh on impossible to have a 100% universally tolerable substance for use in medicines or anything else (except maybe water?).

Intolerance, even for a tiny minority, is something that's only really begun to be (grudgingly) accepted in recent years, both inmedicines and foods. Just like the 'everyone will tolerate and fully recover from hypothyroidism on T4 only' mantra!

helvella profile image
helvellaAdministratorThyroid UK in reply to RedApple

Have just re-posted that response on PAS. The B12 issue could be very interesting.

dizzy864 profile image
dizzy864

Yes you re right. I m worse than most for tolerating any meds.

McPammy profile image
McPammy

HiI much prefer Wockhardt liquid Levothyroxine to any other I’ve tried. It’s tasteless too. I’ve reduced my dosage from the 75mcg a day whilst on tablets to 68 on liquid form. Maybe it’s a little stronger or absorbing better. I also spilt my dose as I can’t seem to take a full dose anymore? Why I’ve no idea. I’ve tried to go back to one full dose but it makes me feel awful. So splitting my dose is my answer. A faff but it’s worth it to feel good. I’m also on Liothyronine T3 5mcg twice a day.

Have you had a thyroid blood test recently to check your levels whilst experiencing your headaches. Also have you checked your blood pressure.

dizzy864 profile image
dizzy864 in reply to McPammy

Hi, Thank you for replying. My blood pressure used to be borderline low. Then when I started having hypo symptoms it shot up to borderline high. When I changed to liquid levo last July it went down considerably to a more normal level. I check it regularly. I had a thyroid test back in March. I was surprised to find that T3 was still slightly above range. T4 is well within range. I had hoped that as I'd reduced lio such a lot it was now back in range. ( Sorry, I can't give actually results as there is a problem with my gps web site - It says I have access but I don't! ) T3 has been a bit above range for a few years. My endo told me it was because I was not absorbing lio as I should and lio is basically passing through me. My gp told me to try to reduce lio. I did - I reduced from 47.5mcg to 45. Quite a small decrease. I was fine for almost two weeks and then hypo hit. My bowel virtually stopped working, I had to pee very frequently but the worst symptom was the hunger. It was terrible, I was snacking all the time and still ravenous! I put the lio back up to 47.5 mcg and after ten days I've returned to normal.I think what I really need to do is to increase levo and then decrease lio. I'm going to try to speak to my doctor tomorrow. I was going to ask about first of all trying Wokhardt and then if my T3 is still over range asking for an increase to levo and a decrease to lio. I really don't want to decrease levo to bring T3 down as I am finally absorbing it and feeling so much better.

The Zentiva also contains sodium methylparahydroxybenzoate ( E 219 ) which it states may cause allergic reactions. I have had a constantly runny nose for some time and I'm wondering if this is the cause. Again I thought this was due to long covid, but now I think not. It constantly runs with very watery liquid. My nose is getting really sore as I constantly wipe or blow it. It's a bit like I think hay fever is although I've never had hay fever. With long covid, I constantly scrolled through different symptoms so I put everything down to long covid. Now I think something else was going on!

Tintin0202 profile image
Tintin0202 in reply to dizzy864

Hi dizzy, I too am taking Zentiva oral solution - 72mcgs. It suits me better than the pills, but still not feeling great. I used to suffer from terrible migraines, but very rarely have them now. I don't like taking sodium methylparahydroxybenzoate and would like to get back onto tablets, but the excipients don't agree with me. Have just seen my GP and he thinks my symptoms are from long covid as I have good days and bad. I too have a runny nose but maybe due to pollen and I take Xlear spray which helps a lot. I also find I can't tolerate most meds. I am being referred to an Endo with a view to taking T3 and having more blood tests next week. Will report back with more when I have had the blood results and seen the Endo.

dizzy864 profile image
dizzy864 in reply to Tintin0202

Thanks for your reply. Long covid is a big problem because of the huge range of symptoms that it can cause. Everythingt gets blamed on it. I am much better now but it's taken almost two years. I still get very tired when I do anything, but hopefully tiredness is just the last to go.

My runny nose definitely is not down to pollen. I have had it constantly for almost two years. The season makes no difference. I've never suffered with hay fever or seasonal allergies before. It's really odd it's just a very watery discharge.I have a problem with tolerating any meds. Unfortunately, returning to tablets is not an option for me as I did not absorb the levo. I am doing much better on liquid - just a shame it took seven years to find it!

Good luck getting T3. It gave me my life back but only when I got an optimal dose.

McPammy profile image
McPammy in reply to dizzy864

My experiences of your symptoms like hunger for me is over medicated. I feel awful if my T3 or T4 go over range. I feel best mid range or just slightly above mid range. I think your levels are too high and you won’t feel well being over medicated. You don’t need high doses to feel good. A healthy persons levels wouldn’t be over range not their TSH suppressed. I feel as though you could do with reducing both T3 and T4 slightly. See how you feel. Get another blood test then reduce slightly again if you still are not feeling good repeat. Until you find your own personal optimal level.

dizzy864 profile image
dizzy864 in reply to McPammy

Hi, I am so glad that you are not my doctor!Your hunger may well have been down to being overmedicated as hunger is a symptom of hyper. However, hunger is also a symptom of being hypo!! I REDUCED lio and became ravenous, therefor hypo . If I had INCREASED lio then I would agree with you that I had become over medicated.

My TSH has been suppressed for many years - following an increase to T3. I became optimal and my TSH suppressed. A couple of years ago I was prescribed HRT, which blocked my levo absorption. This resulted in my becoming very, very hypo. My TSH remained suppressed. Following your logic - I will never be well again as my TSH will always be suppressed! There are many people on this site who have suppressed TSH and are very well. It is only ignorant doctors who think this is a problem.

Lastly, whilst you are right that T3 should not normally be over range, I did explain that my T3 is over range because I do not absorb meds properly - confirmed by my gp and an endo 18 months ago.

Thanks for your reply but I prefer not to follow your "feeling".

McPammy profile image
McPammy in reply to dizzy864

We are all different and have different symptoms and ways to resolve our well-being. I was only giving you my own experiences l. I hope you get yours resolved as I have now and feel better than I have in over a decade.

tattybogle profile image
tattybogle

T3 has been a bit above range for a few years. My endo told me it was because I was not absorbing lio as I should and lio is basically passing through me.... I did explain that my T3 is over range because I do not absorb meds properly ...

? when you say 'absorbing' .. do you mean 'absorbing T3 into the blood from the tablets' ?

.. or a different meaning of 'absorbing' ?

.. if you mean 'there is a problem absorbing it into the blood from tablets' .. then the fT3 would be LOWER than expected for the dose taken , not higher than expected.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Similarly ... with your experience with estrogen. It doesn't explain a high or over rage FREE T4 level.

Increasing Estrogen increases TBG (Thyroxine Binding Globulin) so more of the T4 we take gets bound to more TBG..... meaning the 'bound' T4 level goes up (measured in a TOTAL T4 test) , and the Free T4 level goes down ... Taking estrogen is not an explanation for a high FREE T4 level ... it is an explanation for a high TOTAL T4 level, with a correspondingly LOWER FREE T4 level .

people on levo who start taking estrogen do usually need an increase in dose of levo, this is true ,, but more estrogen doesn't mean their FreeT4 results will be over range.. their FREE T4 result will go lower on same dose as more of it gets bound to TBG, and an increase in dose will compensate for the extra binding of T4 to the increased TBG ,,and so the Free T4 will then rise to its previous level with the higher dose of levo.

Added estrogen doesn't mean the FREE T4 goes over range .. it lowers it, and a dose increase is needed to bring it back up to where it was before .

pubmed.ncbi.nlm.nih.gov/113... Increased need for thyroxine in women with hypothyroidism during estrogen therapy "The women with hypothyroidism had similar increases in serum thyroxine* and thyroxine-binding globulin concentrations during estrogen therapy, but their serum free thyroxine* concentration decreased from 1.7+/-0.4 ng per deciliter (22+/-5 pmol per liter) to 1.4+/-0.3 ng per deciliter (18+/-4 pmol per liter, P<0.001) and their serum thyrotropin* concentration increased from 0.9+/-1.1 to 3.2+/-3.1 microU per milliliter (P<0.001). "

* NOTE serum thyroxine* = TotalT4 /TT4.

serum free thyroxine* = FreeT4 /fT4

serum thyrotropin* = Thyroid Stimulating Hormone/TSH

dizzy864 profile image
dizzy864 in reply to tattybogle

Thanks for replying.The problem was that I was not told that eostrogen would block my levo - had I been I would never have taken it. Firstly I was many years post menopause - which I had absolutely no problems with and never needed HRT. I was not monitored in any way. It was only after several months when I was so unwell that my gp suggested bloods. My free T4 was really low, my free T3 was virtually unchanged from the previous test ( slightly over range ). My TSH remained suppressed.

You seem to think that I said free T4 increased, it did not. It went very low and I became the most hypo I had ever been. Before starting the eostrogen, I googled it's interaction with lio - because the endo told me it would increase it's absorption. I could find absolutely nothing to support that. My gp said she had never heard of this either, but as the endo said I should take eostrogen I should. It never occurred to me to google levo and eostrogen as I was never told that there was any interaction.

I also found out, thanks to google that the standard test for oestrogen levels in women in the UK is much less sensitive than in the U.S.A. A dangerous low level of eostrogen in the U.S.A. is very much lower than the U.K. test shows up. If the endo was genuinely concerned that my eostrogen was too low, he should have requested I do a much more sensitive test, which would have shown up my actual eostrogen level. I paid this guy a lot of money as I was seeing him privately. He lied to me and it lead to disastrous consequences, which can never be made right!! It's a pity that I can't name and shame him on this site as a warning to others!

As far as I can remember I have never had my totals tested.

tattybogle profile image
tattybogle in reply to dizzy864

"You seem to think that I said free T4 increased, it did not. It went very low and I became the most hypo I had ever been."

.... oh , i was looking at previous posts where you said 'T4 was near the top ' ..... i assumed you meant FreeT4 was near the top, as you didn't post any LOW FT4 results, and you don't think you've had your Total T4 tested..

(june 2021)" Nine months ago I started seeing an endo privately. He told me that my body is unable to absorb levo properly due to having virtually no oestrogen following the menopause over ten years ago. He said the fact that I finished the menopause ten years ago means that lack of oestrogen is causing my hypo symptoms. He's told me to take numerous forms of plant oestrogen and then HRT. I can't tolerate them and become very unwell - severe head aches and/ or severe stomach problems. He told me that is due to lack of oestrogen too. Eight weeks ago I started on vagifem twice a week. I can tolerate it, which is progress but it is such a tiny amount of oestrogen.

My T3 is now over range and my T4 is near the top"

"This is because oestrogen blocks levothyroxin absorbtion. It adds a warning that T4 will rise which normally shows an improvement but it actually means a deterioration as levo is not being absorbed, but passing straight through the body."

I was just checking you had understood the estrogen action correctly, as your phrase "estrogen blocks levothyroxine absorption" could be a bit misleading if people don't understand about TBG. Estrogen doesn't block the absorption of T4 from the levo tablet into the blood .. it increases TBG which means once the T4 from levo gets into the blood , more of it is 'bound' and therefore less of it is 'freely' available to use .... which will show as higher TT4 and LOWER fT4 .. so the low fT4 is the reason to increase the dose to compensate for the higher TBG .

Perhaps we are meaning different things by the word 'absorption' ?

Most of us on here (and most references in medical literature) would use 'absorption' to mean 'getting the T4 /T3 into the blood from the tablets '.... so when we talk about 'absorption problems' with levo , then this would show in the the bloods as LOWER fT4 levels not higher fT4 levels.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Same issue applies with this phrase.. but perhaps it's because you are using the word 'absorption' in a different sense to the one which is usually understood ?

" T3 has been a bit above range for a few years. My endo told me it was because I was not absorbing lio as I should and lio is basically passing through me.... I did explain that my T3 is over range because I do not absorb meds properly ... "

By the usually understood meaning of 'absorption' .. if you did not 'absorb' the meds properly (from the tablet into the blood ) .... then your T3 would be LOWER not higher .. ie. you would have to take a larger dose of T3 than expected to get a reasonable fT3 level in blood.

dizzy864 profile image
dizzy864 in reply to tattybogle

I was trying to simplify things - I appear to have made it more complicated. I was told that levo and lio should attach to sensors throughout the body. If they fail to attach to the sensors then one becomes hypo. If they fail to attach to some sensors, then depending on where they fail to attach that will cause particular hypo symptoms. I was using ( perhaps incorrectly! ) absorb in place of attach. This made sense to me as I had many but by no means all of the possible hypo symptoms.I do know that the longer I took HRT, the more hypo I became. This was apparently down to it's reaction with levo as I could find nothing to indicate it reacts with lio.

I'm afraid your technical explanation and formulars are too technical for me!

tattybogle profile image
tattybogle in reply to dizzy864

ah . ok.Was really just clarifying for anyone else reading later, don't want them thinking 'estrogen stops T4 being absorbed into the blood', or else everyone's understanding just gets confused and they go off to the doctors with the wrong idea of what is causing their problem.

But as you clearly felt worse on estrogen, it obviously didn't agree with you for whatever reason ,even though your high fT4 blood result on estrogen didn't seem to show it made you more hypo.

But how you feel 'in practice' is more useful evidence than 'the science' .. there is so much we don't yet understand about how thyroid hormones actually work ,and more importantly why they sometimes don't for different people .

As your free (available) T4 was still 'near the top' when you were taking estrogen .. there was still plenty of T4 to attach to your receptors. Estrogen doesn't affect that 'attaching' of freeT4 with receptors as far as anybody knows.. it just means they may have to slightly increase the dose of levo to get the same amount of free T4 they had before they increased their estogen level.

Guost profile image
Guost

Hi just to let you know I went onto Zentiva and felt much better on it however one bottle I received gave me the biggest headache and I just couldn’t use that bottle. It might be a dodgy batch. However I would take the dose, 2 hours later every time the headache starts. It was definitely the Zentiva xx

dizzy864 profile image
dizzy864 in reply to Guost

i had trouble with a couple of bottles. It burned the back of my throat, made me wretch. One time I vomitted after taking it. I tried to change to a different brand. No pharmacy in my area would supply anything different. I ve very reluctantly stayed on it. I have not had a problem since then . It was 3 months ago.

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