A REAL DILEMMA, ANY ADVICE VERY MUCH APPRECIATED.

[SPD1]

Hi Everyone,

got a real problem i would Very much appreciate advice or guidance on.

Just to summarise, i have been on Levo Thyroxine only for 20 years, 150mcg daily, was taking Actavis brand with no issues at all up until about 5 months ago and then all of a sudden started developing, muscle twitching, arm and leg tremors, leg weakness, breathlessness, serious hair shedding, blurred vision etc. It appears there may possibly have been a change to the Actavis brand, anyway for whatever reason i can no longer tolerate Actavis. I went to see GP who for quite a while has been putting me under significant pressure to reduce dose, my TSH has been anywhere from 0.03 to 0.08 for the last 10 years and my T4 at top end and T3 mid range, B12, Ferritin,Folate all fine, low Vitamin D which i am supplementing, i have been absolutely fine at those levels and i know i am not over medicated but of course my GP is obsessed with TSH and NHS guidelines, anyway, she made an appointment for me to see an Endocrinologist because of the symptoms which was for 23rd February 2020 but the hospital contacted me yesterday to bring the appointment forward to 22nd January, i told them i no longer wanted to attend as my symptoms had disappeared so they cancelled the appointment, i was worried sick that if i had attended and based on what my GP would have put in the letter to the Endo about my symptoms even if i told Endo the symptoms had disappeared they would probably want me to reduce and i didnt want to take the risk as i know i would never get it increased again with the NHS based on my TSH levels.

In the interim i swopped to Mercury Pharma Levo and have been on that for over 3 months now and the symptoms seem to have almost disappeared and things seemed to be levelling out and settling down nicely.

Last week i was starting with a cold and took Lemsip Max Powders as i have always done and had no issues with, i took for 3 days and ran out, went to chemist and they didnt have Lemsip Max Powder but did have Lemsip Max All In One Powder, same constituents as Lemsip Max but with the added ingredient GUAIFENESIN, i took 1 sachet last friday night and had absolutely no sleep and on Saturday i had raised heart beat and slight tremors were back and transient wooziness and slight breathlessness, since then my sleep has been terrible, i have continued with the raised heart rate, not bang, bang palpitations but its not right, even when i am absolutely still in bed or lying down i can tell its faster than usual, i woke this morning and heart still not right and tremors much worse, i appear to have reacted to the Lemsip Max All In One, for info, i communicate on here with a Lady who's Daughter feinted 5 minutes after taking 1 sachet of the Lemsip All In One and the Lady herself suffered heart palpitations and dizzyness after she took the Lemsip Max All In One as well.

I am very concerned that it hasnt died down since last Friday and actually appears to be getting worse,obviously i need to see a Doctor but i am now worried that after cancelling my Endo appointment because all my symptoms seem to have died down i am now going to be presenting with similar symptoms and i feel sure that the GP will dismiss the Lemsip as being the culprit and not be best pleased with me for cancelling Endo and just jump to her obvious conclusion that i'm over medicated.

I popped to a local chemist yesterday and they checked my blood pressure which was ok.

So i really dont know what is the best way to approach the surgery, maybe not mention the tremors and just the raised heart beat so at least i am in front of a GP and they can check heart?? I feel like i am really boxed in with this now and it would appear that the Lemsip Max All in One has set something off with my thyroid again

I would Really appreciate any advice or guidance on this as i am seriously worried and feeling extremely isolated with it all.

Thank you so much in advance for any response.

[Hidden]

I'm so sorry to hear of your problems SPD1 and am not able to comment on the Lemsip ingredients,however,I am interested in your comment about a possible change in Actavis Levothyroxine as I am at the moment questioning my own blood test results.

Last May,my FT4 was 11.5(7.9-16) My FT3 was5.8( 3.8-6.0)

In November my FT4 had gone down to 10.5 and my FT3 down to 4.7 ....same ranges.

I too use Actavis Levo plus Morningside T3 and haven't felt so good on it in recent months.. I take 100/75alternate levo plus 10mcgs Liothyronine.

Would you by any chance still have some packaging from your Actavis Levo and be able to post the batch numbers? I would be grateful if you could.I will check my batch numbers too.

[SPD1 in reply to Hidden]

Hi Marfit,

apart from your blood results being different have you noticed any changes, symptoms at all??

There are a number of people on here who take Actavis who have noticed changes and a number who appear to have noticed no change whatsoever, i think my symptoms were quite extreme in comparison to other people but i do have a MEGA sensitive system.

I have spoken to Actavis at senior level on a number of occasions and they assure me there have been no changes but it seems bizarre to me that i have been on Actavis for 15 years, same dose with no issues at all and then all of a sudden i had major symptoms. they did however tell me that they outsource the fillers! i am wondering if they have changed one of them and that's what i reacted too.

I don't have the packaging anymore but i tried about 6 different batches over a couple of weeks and i got the same reaction with all of them, my pharmacy were really helpful in keep swopping batches for me to try.

There are people far more knowledgeable on here than me who may be able to shed light on why your bloods have changed, but i have always been more concerned about how i feel as opposed to what my bloods say, but that's just me, if anyone doesn't add anything to this then maybe it would be worth you posting about your differing bloods?

Thanks.

[Hidden in reply to SPD1]

Thanks for your reply.

My muscular pains are a problem,but I have also noticed more grey hairs than usual falling out,less energy ,not sleeping soundly through the night which is not normal and no motivation to get painting which has always been my hobby. I am just not myself.

I will look at an Actavis patient leaflet from some time ago to see if the fillers vary at all. I am like you,pondering why this has happened.

All best wishes for 2020.

[SPD1 in reply to Hidden]

Actually Marfit, the Actavis patient leaflet is something i didnt check, would you please let me know if there appears to be any difference in fillers etc??

I cant understand why those Lemsip have kicked all my issues off again though.

All the best to you in 2020 as well.

[humanbean]

I sometimes get palpitations and/or episodes of tachycardia (fast heart rate). I sometimes get muscle cramps, spasms, restless legs too. For episodes like this there are a few things I try which sometimes help :

Magnesium

Potassium

Sodium

...

Do you take magnesium supplements? If you don't you probably should do. A massive number of people are magnesium deficient. Unfortunately the most common test for magnesium is very unreliable. Only about 1% of the body's magnesium is in the blood stream and the body works to keep that level fairly constant by stealing it from other cells in the body. So, someone could have an in-range level of magnesium on a blood test and yet be very deficient.

Most people don't actually bother testing magnesium. It is safe to supplement it unless your kidneys are in very poor shape. Assuming your kidneys are fairly functional they will excrete excess magnesium through the urine.

Magnesium supplements come in lots of different forms - it can be swallowed in a pill, sprayed on the skin, put in the bath while you soak. You need about 300mg - 400mg elemental (pure) magnesium per day. Check these links and find a supplement you like :

naturalnews.com/046401_magn...

drjockers.com/best-magnesiu...

Avoid magnesium oxide - it is very common in all sorts of supplements, it is very cheap, and it is almost completely impossible for the body to absorb it.

Personally I take magnesium citrate - it has a very mild laxative effect I find useful. But there are many other forms.

...

Potassium sometimes helps to slow down my heart if it is going uncomfortably fast. There are many foods and drinks which are rich in potassium. For example, eat a banana or drink a glass of coconut water. For more options :

healthline.com/nutrition/fo...

I always keep some potassium supplements in stock as well and take a couple of tablets when necessary (which amounts to half the normal daily dose stated on the bottle). I don't have a particular recommendation for which one to buy. They almost all come in doses of 99mg of potassium per tablet, I don't know why. But there are lots of ways of supplementing it. This article is good - read the comments too :

drmalcolmkendrick.org/2013/...

...

Sodium (usually comes from salt) - low sodium can increase arrhythmia. If your heart is still going too fast after trying magnesium or potassium then salt is the last thing I always try.

You can either take 1/4 to 1/2 a teaspoon of salt in a glass of water and swallow it, or something I find more palatable is making a drink with this stuff :

tesco.com/groceries/en-GB/p...

[SPD1 in reply to humanbean]

Hi there,

many thanks for your reply, i eat really well and supplement all the correct things, but as i mentioned below this is an immediate response to the lemsip all in one, its too coincidental, i was fine all day last Friday and then after taking the lemsip all in one in the evening WHAM, BAM.. its really worrying to know what to do for the best as its getting worse not better.

[humanbean in reply to SPD1]

Magnesium works for me within about 10 - 15 minutes.

Potassium works in about 5 - 10 minutes, and so does sodium/salt.

If the magnesium works I stop there. If the potassium works I stop after that. I only take salt if neither of the other two help.

[SPD1 in reply to humanbean]

thanks for that, have you experienced tremors of the legs and arm though?

[humanbean in reply to SPD1]

Sometimes. It usually turns out to be a nutrient deficiency which I deal with myself.

But tremors can also be caused by incorrect levels of thyroid hormones - too low OR too high. And poor adrenal function can cause tremors too. Sadly, thyroid problems are rarely straightforward and easy.

[SPD1 in reply to humanbean]

i hear you.

the thing is, its not been a gradual process, i was pretty well up until last friday and then as soon as taking that Lemsip, BAM the following day it started and has got progressively worse, it just seems to much of a coincidence to be good one day and then downhill the next after taking that Lemsip. it seems like its triggered something, in one respect Hyper symptoms with the tremors and heart yet in another i am REALLY cold at the moment and seem to have been all week and it doesnt appear to be as cold as i feel checking weather apps etc, im at a loss as to when i need to start considering seeing a doctor or to ride it out for a few days more

[humanbean in reply to SPD1]

I first developed fast heart rate when I was extremely low in iron. Once it was triggered for the first time I have never managed to eliminate the problem entirely again, and it still arises fairly often. I have to keep my nutrients as close to optimal all the time which can become expensive in testing and supplements.

[SPD1 in reply to humanbean]

Thats interesting.

I have just thought of something, i used to take Sweetex regularly in my coffee until i originally started experiencing the tremors etc with Actavis so i stopped them when i switched to Mercury Pharma and just used brown sugar.

At the tail end of the week before last i started taking sweetex again because i didnt really think it would be them causing the issue, however i stopped taking them again after a few days as i started with a sore throat which is what i was taking the Lemsip for and i wondered if the sweetex was making throat worse, surely sweetex couldnt have caused this, i did used to take a lot of them, 3 cups of coffee a day, 6 sweetex in each, yes i have a very sweet tooth, have you ever heard of any issues with sweetex??

[humanbean in reply to SPD1]

I stopped taking sugar and/or sweeteners in tea and coffee as a teenager many decades ago.

I've never used sweeteners on a regular basis for any reason so I can't really comment on them.

If you've got suspicions about the sweetener just try switching to a different one or switch to ordinary sugar and see if it changes anything. People can have nasty reactions to anything and for most everyday things trial and error is the best way to find out.

[SPD1 in reply to humanbean]

have stopped them again, it was just a thought as took a few last week.

This is absolutely bizarre, tremors seem to have decreased right down to virtually nil in the last hour, heart still slightly elevated, no doubt tremors will return, i just dont understand whats going on

[humanbean]

I forgot to mention - low iron and low ferritin can cause problems with the heart and muscles. However, supplementing with iron is not a good idea unless you know that your levels are low. Testing is essential. Taking iron unnecessarily can be poisonous.

[SPD1 in reply to humanbean]

I tested a few months ago and iron and ferritin are all fine according to medichecks. this is more of an immediate response and reaction less than 24 hrs after taking that damned Lemsip all in one

[SPD1]

hi there,

thanks for your reply and the link. It does list possible palpitations with Lemsip and Guaifenesin but i cant see tremors anywhere, bearing in mind it was 1 sachet last Friday night and i have worsening symptoms, its very concerning, i did take a few days before hand of the standard Lemsip Max without Guaifenesin but i have taken in the past and its always been ok with no reaction, i would have thought it would have started to fade and the symptoms die down by now, i don't know whether to see a doctor or not or give it a few more days. Im in a quandry but i know if i seee my GP she will immediately pressure me to reduce dose.

Have you come across many on here who have suffered a similar reaction to you and myself "thyroid storm" if thats what it is with me. I just know that the symptoms didnt subside with me originally until i swopped to Mercury Pharma. My neck has really stiffened up today as well which is usually a thyroid indicator.

[SPD1]

Hi,

thats what concerns me, thats its rare and also that i have returned to the same symptoms before i switched to Mercury Pharma, i really dont know what to do for the best now as if i present to a doctor like this they will immediately assume i'm over medicated and insist reduction.

[SPD1]

Maybe i am assuming the worst but i am under incredible pressure from my GP to reduce based purely and simply on TSH, and the symptoms i am presenting are Hyper, i have had some real battles with her to stay on current level as i have felt fine, but she doesnt seem overly interested in how i feel, just that bloods are in guidelines!! will read your story.

[SPD1]

Hi,

i have such a mega sensitive system i am worried about ordering medication off the internet.

[Wetsuiter]

You were taking the lemsip for a reason. Could it be that you are 'just' ill. I'm not being patronising, it just crossed my mind and thought i d suggest it (i rarely recognise illness at the time).

[SPD1 in reply to Wetsuiter]

Thanks for your reply,

well i have found in the past that if i feel a tickle at the back of my throat which indicates a cold on its way if i take Lemsip straightaway it wards off the cold, i didnt develop a cold, just a sore throat for a few days, maybe a virus. i seem to have returned to the same symptoms i developed taking Actavis even after they settled down after switching to Mercury Pharma, not sure if a virus can give you raised heart rate and leg and arm tremors, something has happened to return me to the former problems

[SPD1]

agreed, but i am trying to understand what has happened after everything settled down, something has triggered it all off again and it just seems it was the lemsip of all things, plus it now leaves me in a difficult place indeed with my GP again regarding trying to argue to stay at the same dose whilst presenting Hyper symptoms.

[SPD1]

Hi Lora,

i understand what you are saying but i dont feel ill as such, i have gotten over the sore throat, i dont have a cold, but even so i have not seen anyone else or heard of anyone else who is having arm and leg tremors, leg weakness and raised heart beat as a result of a virus, if i had i would be far less concerned, i am Very much feeling the cold at the moment and struggling to get warm in bed which is not usual at all, plus a bit breathless as well.

[SPD1]

That will be have to be the last resort as i know exactly what the repercussions will be regarding Levo dose.

[SPD1]

Hi, sorry, only just seen your response.

I am not ill as such, i took the lemsips last week because i had a sore throat and thought i had a cold coming, i had a sore throat for 3 days but did not develop a cold. i no longer have a sore throat, its fine and back to normal.

However, yet again i have had palpitations all night long whilst lying perfectly still in bed, the leg and arm tremors and leg weakness are still present, slight breathlessness and my vision is slightly more blurred than usual, but that seems par for the course with thyroidism, i have good and bad days with my vision.

All the above symptoms started 6 months ago after being on Actavis for 15 years with no issues at all, i then swopped to Mercury Pharma because there appeared to be a change in Actavis andi felt it caused all the above issues, after being on Mercury Pharma for the last 3 months all the above symptoms seemed to be settling down nicely and i was getting back to "fairly normal again". Its after taking the lemsip All In One last week that the symptoms have started again, i feel its triggered something with my thyroid. i have googled the constituents and there are other people who have experienced palpitations and as i mentioned in my original post i have chatted to a Lady on here whose daughter feinted within 5 minutes of taking a sachet of Lemsip All In One and the Lady herself took a sachet and experinced palpitations, dizzyness. it would appear it reacts with certain people, me being one of them, anyway, to me, arm and leg tremors, leg weakness, palpitations are Hyper symptoms ??

My quandry is if i approach my GP now i know she will just immediately suggest reduction of dose as i appear to present Hyper but that maybe a smoke screen for something else going on but once i have reduced i will never get an increase again qwith the NHS because of my TSH being at 0.03, GP already in melt down about it.

I probably need to see a Doctor though with the palpitations etc just in case, its real quandry to know what to do for best because of the consequences of reduction, i cant see that i have gone from HYpo to Hyper