Levo problems.....?

[Olsbird]

Hi all. I'm having real problems with levo. At first the issues were prickly heat sensation, burning face, burning back of eyeballs, burning up generally, weak left arm. Later these became less or went but replaced by a feeling of ralgex on my left breast and dry mouth and loss of appetite. I saw a dr privately in desperation as was getting nowhere with my GP (he said the issues I complained of were nothing to do with levo). The private doc said to halve the dose which I did pending some private blood test results coming back. Within 24 hours I got my appetite back and after a couple of weeks I lost the ra!gex breast. I found a new GP and she was sympathetic to my being unwell on 50 of levo but my bloods showed my t4 wasn't where it should be so she suggested to avoid the side effects I start to increase gradually by alternating 25 and 50 mcg\day for 3 weeks then 50 mcg daily before a new blood test. I had hoped the reason I was struggling initially with the levo was ferritin levels on the floor (although mynew GP didnt seem convinced). A week of this alternating dose and my ralgex breast is coming back and I feel like I have a knife I my lower back towards the side which gets worse from late evening into the ear!y hours. Has anyone else had issues like this and what was the solution. Im gearing up for another round of 'it's nothing to do with levo' but I had none of these issues before I started taking levo. Any thoughts on trying to get an ndt trial? BTW I still have hypothyroid symptoms like tiredness and sensitivity to cold and I feel quite down but that could be due to 4 months of levo hell. Thanks all xxxx

[Clutter]

Olsbird,

I would discuss with your pharmacist and ask him/her to prescribe a different make of Levothyroxine to see whether the adverse symptoms improve. There are 3 makes available in the UK, Mercury Pharma 25mcg, 50mcg and 100mcg, Actavis (also known as Almus) 50mcg and 100mcg, and Wockhardt 25mcg.

[Olsbird in reply to Clutter]

Thanks. Great thinking as always clutter.

[Spicer21]

Hi Olsbird,

I have been on 50mcg of levo a day for many years and now, all of a sudden, I started having horrendous muscle pain in my right outer thigh...have been bedridden for a couple weeks because of it. I have fibromyalgia but this isn't imo anything to do with that as how it came on and how it feels is different to the muscle aches and spasms that I normally get....

With me I believe the levo has brought on 'drug induced lupus' or exacerbated lupus that I didn't know I had before; this can happen if you've been on levo for more than month, even up to 10 years of being on it...I get skin rashes and am having gut problems which are also indicative of lupus. This is a medical paper about it isdbweb.org/documents/file/... Stopping levo usually stops the lupus type symptoms.

I decided to halve my dose of levo just yesterday, when I found out about drug induced lupus, and am feeling quite a lot better this morning. It can't be a placebo effect as I wasn't expecting improvement at all that quickly! It's such rubbish that levo can't possibly be causing our symptoms.

I'm like you, don't know where to go from here. Am contemplating coming off levo altogether and will be spending time looking up what to do, who to see and whether or not I should go on dessicated thyroid, take T3 or whatever.

I shall be following this thread to see what advice you receive and wish you all the best. (Sorry I don't have any answers to offer, but just wanted to say that you're not alone.)

Fielder Xxx

[Olsbird in reply to Spicer21]

Thanks fielder. Sounds like you are having a rough time. I'm going to try a different name brand as clutter suggests and see where that takes me. It's so frustrating - I talk to several people who had no issues at all on !evo. Think we drew the short straws!

[Spicer21 in reply to Olsbird]

I didn't have issues on levo for years, not until very recently, so with levo only time can tell...

I was on the same brand, i.e. Actavis for 8 years, then 16 weeks ago the chemist I usually go to gave me Mercury Pharma instead and I was on that for 8 weeks (seemingly with no problems), then the chemist gave me Actavis again and 6 weeks into taking it (i.e. Activis), the thigh pain and my gut problems suddenly hit me. I have finished the Activis now and, guess what, the chemist has now given me 8 weeks' supply of Mercury Pharma again, so I've started it, but have halved the dose...

I mention the above as I was just reading that some people can become really sick purely with the swapping makes. However, I understand that pharmacies are at liberty to give you whatever make they happen to have in stock, so you can't always be guaranteed to get the same make, however, on the thyroid uk website it says:

"There is one official branded version of levothyroxine, which is Eltroxin (manufactured by Mercury Pharma). It is possible for your GP to write this brand name on your prescription, which will ensure that you are only supplied with the Eltroxin branded product. However, not all patients find that Eltroxin suits them.

If you have found that you feel better on tablets with a name other than Eltroxin on the box, you can ask your pharmacist to make sure that you are given levothyroxine from that supplier every time. Most pharmacies will try their best to do this for you if asked, but if necessary, shop around at different pharmacies until you find one that will accomodate your requirements."

[Clutter in reply to Spicer21]

Fielder,

Patients don't have to accept whatever make the pharmacist decides to dispense. My pharmacist knows I will not accept Mercury Pharma which caused me more adverse effects than Actavis or Wockhardt.

It is possible that Olsbird is not tolerating Levothyroxine but s/he will have enormous difficulty getting her doctor to accept that and prescribe alternative replacement so s/he may as well first try to see whether there is improvement on another make which can be arranged via her pharmacist.

[Spicer21 in reply to Clutter]

Thanks, Clutter.

I'm guessing that I might have the best luck with dictating which make they give me if I go to an independent, rather than a big chain chemist? (When the chemist I usually go to gave me a different make to normal, they refused to replace it with Activis, the brand they'd been supplying to me and I had been taking for many years )

Have you any idea why the Mercury Pharma caused you more adverse side effects than the other two? Fillers, perhaps?

I absolutely agree with what you say about it being likely that it would be hard for Olsbird to get his/her GP to prescribe an alternative and I wasn't intending to imply that it isn't worth trying another make, i.e. before going down a potentially much more difficult road.

And I only mentioned about intolerance to levo because I think it's happening to me and s/he might want to be aware that intolerance to the extent of causing lupus like symptoms can occur at any time, anything from the early days of being on it, right up to 10 years, in some cases...Although I understand that drug induced lupus is supposed to be rare...

With me I'm not sure if I have drug induced lupus or my currently problems are simply a case of my body not liking the change from long-term Activis to Mercury Pharma for 8 weeks, and then back to Activis again. It's such a bloomin' minefield!

[Olsbird in reply to Clutter]

Hi clutter. When you say 'not tolerating levo' can you expand on what you mean. I'm aware some folks can't convert t4 to t3 easily or at all but are there other reasons people don't like levo that you know about. my new GP - who is lovely and much more enlightened than the other ones I saw - I think will take some convincing that Levo is the problem based on a comment she made last time about levo just putting back what should be there. That's why I am anticipating a bit of a battle.....

[Clutter in reply to Olsbird]

Olsbird,

Some people become very unwell on Levothyroxine, so much so they have to stop taking it even if their thyroid levels show they need it. Some will be okay on Levothyroxine (T4) and Liothyronine (T3), but others don't do well on synthetic replacement and may do better on natural dessicated thyroid (NDT) which they usually have to source online.

I felt poisoned when I was switched from T3 to Levothyroxine and felt better when I was taken off it for 4 weeks and unwell when it was reintroduced and I became 90% bedbound for 15 months. Endo said Levothyroxine couldn't cause the symptoms I experienced but symptoms resolved completely after I stopped taking it for 3 months, and resumed within a day of restarting. I added T3 which calmed the adverse effects I had on T4 only and improved poor conversion. My health was so improved six months after self medicating T4+T3 endo prescribed the combination for me.

[Spicer21 in reply to Clutter]

Hi Clutter,

How did you manage to start off on T3? When I was diagnosed as being hypothyroid I was only offered levothyroxine on the NHS.

Thanks in advance.

[Clutter in reply to Spicer21]

Fielder,

See my reply to Olsbird below. I meant to respond to you but included it in my reply to Olsbird duh!

[Olsbird in reply to Clutter]

Thanks clutter. I find it inonceivable that people can have horrible effects immediately after taking meds but docs say the meds aren't to blame. It's truly shocking that common sense gets excluded from equations. I'm going to at least try and get my GP to give me the benefit of the doubt that I don't like levo

Wish. Me luck!

Do you mind me asking if you had similar symptoms to me? I can't really think why levo wou!d make me feel like I had a knife sticking in mY back. The other stuff I can get as it's sounds like hyper issues and\or on the side effects leaflet

[Clutter in reply to Olsbird]

Olsbird,

My symptoms were quite different - palpitations, racing heart, shortness of breath, dizziness, tremors, fibro type pain in arms and upper body, diarrhoea, fatigue, cold to the core.

I had thyroid cancer and was given T3 for 3 months while I was awaiting RAI as it has a shorter half life than Levothyroxine.

BTA acknowledge that there are patients who are allergic to Levothyroxine but given that most doctors refuse to accept that Levothyroxine does cause adverse effects in some people I have no idea how one is diagnosed as allergic.

You may have more luck persuading your GP that Levothyroxine doesn't suit if you try the alternative brands. If the symptoms are bad on the others your GP can prescribe liquid thyroxine but will almost certainly baulk at the cost.

[Olsbird in reply to Clutter]

Thanks clutter. As always 😂

[Spicer21 in reply to Clutter]

Thanks for explaining about why you were on T3, Clutter....and very interesting re the BTA recognising that some people are allergic to levothyroxine. I've had pains in my shoulders and arms, fatigue and diarrhoea of late and during the months leading up to being diagnosed with hypothyroidism I had horrendous pain in my arms and shoulders ; it made me feel suicidal. I was also found to be vit D deficient circa the same time, so, as I supplemented that too, I wasn't sure whether the levo or the vit D3 or the combination of the two was responsible for my arm and shoulder pain improving at that particular time. Am going to get some blood tests done privately to include seeing what my T3 levels are. I've tried Activis and Mercury Pharma and Wockhardt is out as I currently take 50mcg, but it might be a possibility if in recently reducing my levo dose to 25mcg my blood test results are still in range. Thanks again.

[Clutter in reply to Spicer21]

Fielder,

Wockhardt has less fillers than Mercury Pharma and Actavis and can be fine for people sensitive to fillers. Pharmacist can dispense 2 x 25mcg if required.

[Spicer21 in reply to Clutter]

Thanks, Clutter. Good to know that the Wockhardt has less fillers, so that would definitely be worth a try. Do you think a pharmacy would do that, even if my script says 50mcg tablets...or would I have to ask my GP to prescribe 2 x 25mcg a day?

[Clutter in reply to Spicer21]

Fielder,

Discuss the reason with your pharmacist. S/he can prescribe 2 x 25mcg Wockhardt. If s/he won't take your prescription elsewhere.

[Spicer21 in reply to Clutter]

Thanks Clutter. You're a star

[Olsbird in reply to Clutter]

Clutter sorry to ask so many questions but you are so knowledgeable! I've just looked at the meds and the 25 is mercury pharma and the 50 is almus. Would you happen to know if they have different fillers by any chance. Tried googling for the answer but couldn't find ...... I'm not sure fillers are my issue but rather the dose but just trying to educate myself in advance of the gp session !😥

[Olsbird in reply to Olsbird]

Clutter ignore me. Just found the info on the thyroiduk website. Thanks.

[helvella Administrator Thyroid UK in reply to Olsbird]

You should have the Patient Information Leaflets for the medicine you have. If not, the information is here:

thyroiduk.org.uk/tuk/treatm...

Or here:

medicines.org.uk/emc/ingred...

Almus is repackaged Actavis.

All three UK levothyroxine tablets have different excipients (non-active ingredients).

[Olsbird in reply to helvella]

Thanks hekvella. I'm not at home so don't have the leaflets to hand but I just found the info the website. thanks.

[Olsbird in reply to Clutter]

Clutter thanks for your help on this (and all the other kind folks who took time to reply ). I saw my Dr today and she definitely belongs to the enlightened brigade. She said not to take a dose that makes me Ill although she doesnt understand why. her best guess was maybe I was just unlucky to be so sensitive to the meds. We agreed I'd try to experiment by halving or quartering a 25 to take with a 25 on alternate days and see if that works. If it doesn't she says to drop immediately to 25. In 6 weeks if my experimenting hadn't got me anywhere she will refer me to an endo as she's out of ideas. So it wasn't the battle I'd en visioned and whilst I'm looking at a road ahead at least she isn't dismissive of the side effects. Again, thanks all.

[SlowDragon Administrator]

Many people find different brands give very different results and can really upset balance. (Including myself)

Once I realised this (GP said was impossible, but it is now well recognised issue), I used to physically take prescription around various local pharmacies, asking what brand they could supply before I handed the prescription over.

Now in the electronic age of repeat prescriptions via Internet, I have it sent to same small and helpful pharmacy, who have my brand choice listed in my notes.

I do still just check it is correct when I pick the bag up. Last month I found 3 different brands in the bag!!!! New assistant had not read my notes. They were happy to change them on request, as I had not left the chemists shop.

[Spicer21 in reply to SlowDragon]

Thanks, SlowDragon. I don't know how that works though. Have never ordered my repeat prescriptions over the Internet. Presumably your GP's surgery send your prescription electronically to the pharmacy of your choice and with that prescription there are some notes re your brand of choice? (My GP practice still require you to take or send by post your paper repeat prescription into the surgery and then you can either pick up the prescription and take it off to the chemist of your choice or they put it into the pharmacy that is attached to my GP's surgery.)

[bantam12 in reply to Spicer21]

Just ask your usual Pharmacist to put on their computer records the brand you want.

[Spicer21 in reply to bantam12]

Thanks. Will the big chains do this too, bantam12? It's just that they seem to buy in bulk (e.g. Lloyds pharmacy even put their own branding on Activis) and then give you Hobson's choice, leastways that's been the case from my limited experience.

[bantam12 in reply to Spicer21]

No problem with Boots doing it, I will only take Activis and since it being noted on their records I have never been given any other brand. I always check what's in the bag before leaving the pharmacy just in case, I wouldn't accept a different brand.

[Spicer21]

Boots it is from now on then - thanks, bantam12

[Tic_Tock]

OMG , just came across this post , for 18 months now I have been suffering itching , tried loads , never even considered it could be my Meds that I have used since 1995. Plus the pain you describe as a knife in the lower back towards the side is almost as bad as the itching and prickly heat sensation.

Right , time for me to "wake up" , thank you Olsbird for taking the time putting your experience online.

I need now to get my meds out and read.

[Olsbird in reply to Tic_Tock]

Hi tic tock. Do you have a knife in your back and pricklyheat sensation also? I'd really love to tell my gp I'm not the only one with weird side effects

[Tic_Tock in reply to Olsbird]

Hi Olsbird. I can say for sure , you are not alone.

Get a good GP and a good Chemist, and tell them exactly how reality is.

Yes I do suffer (knife in back , hot skin, itchy skin) not nice as you think all sorts ( I am showering too much/not enough?? ) (Is it the "SLS" in the Shower Gel?) etc . GP sent me to Physio (self referral) , so I did not self refer as I know its not muscle (I cycled Lands End to John O'Groats 5 years ago , so I know how a sore back feels , this pain is very different.

I am one hour into this , getting angry but determined I went and got my tablets , and I am on 1 x 100 micrograms and 1 x 50 microgrames per day (repeat prescription from Lloyds.

So I called Lloyds , and asked , can you tell me which brands you have been given me over the last 18 months , he said "No" , they have no way of telling.

Now , my current boxes are "Actavis" , and the Branding looks the same to me for a while , but I am not sure how long I have been on this "Brand for" if that makes sense.

My dear old Dad (RIP) suffered in his last 4 years of itching head , flaky head , he used to say "This is driving me mad !". He had an underactive Thyroid Gland like me (for over 25 years).

Could be jumping to conclusions......but , having been on the Web for 1 hour its an amazing relief to find various articles about Levothyroxine and reactions.

My wife (Mrs Amazing) said a while ago , my symptoms could be due to the Thyroid issues/meds (but did I listen? or have a day off work to sort it?) No

Thank you Olsbird , and Thyroid UK and HealthUnlocked for this arena of knowledge.

I feel pretty positive now that something is wrong (and its not my fault!)

The journey has got a bit of pace behind it..........

[Olsbird]

Thanks tic tock. Let's please stay connected and update as we seem to be having very similar experiences. I have to say you are braver than me - I've felt so rough for months that I haven't been working. Fortunately for me my employer has been really supportive (so far !). When my symptoms (side effects) started again I persevered but after a week on the alternating dose I've cut back to just 25\day. That's been for two days now and I'm already feeling better in myself and less irritable plus the knife in the back starts really hurting from late evening and seems to peak around 3 am. I know it's only 11pm but so far it's not feeling as bad. Keeping my fingers crossed that continues. I'm really in no mood for my doc to say this isn't all levo related! Do let me know if you achieve any enlightenment!!