Levothyroxine

[xxlou_lxx]

Ive been on this since 2009, I started on 25mcg and went up to 75 mcg supposedly its a normal level but I have stopped taking it because when im on it its giving me palpitations.... is this normal?? its getting in the way of my life so ive stopped it now and I am now suffering tiredness like u wouldnt believe like to the point I cant muster energy to tidy up for example.... I am freezing again also, I tried taking 50mcg instead but palpitations come back... The doctor says I need it so does that mean im going to have to put up with the side effects do any of you who are on this get side effects??

 

[margie]

I think you need to speak to your Dr again and mention the palpitations. This link advises the same.

http://www.patient.co.uk/medicine/Levothyroxine.htm

Other than a Dr - you could try a pharmacist - as they have knowledge on how the drugs work.

 

[xxlou_lxx]

I spoke to him 2 weeks ago and he did my thyroid bloods... says everything is fine its been alright for ages until january. not taken any for 2 weeks and ive lost more weight off them than i did on them??!! I am a freak i think lol

 

[margie]

Go back Lou. Either the levothyroxine is causing the palpitations or something else is, and your GP needs to find out. Palpatations can be scary.

I don't know how long the levothyroxine stays in your body, but is it possible that you stopping taking the tablets could have affected the result - and that your requirements have dropped. - I have no clue this is just a theory.

Is there another GP at your surgery who you could talk to - as the palpitations are clearly quite distressing to you.

 

[xxlou_lxx]

Perhaps ur right, its scary as anything 😱 like flutters that take your breath away but constantly! maybe if i keep not taking them for another couple of weeks and my levels go to what they naturally are then they will be able to tell if I actually need them or not. I think they get stuck in the thinking that once your on them then thats you for life.... I was put on them during pregnancy... Im not pregnant anymore haha surely there are exceptions to the rule?? 🙂

 

[margie]

I wouldn't recommend you stop taking them without speaking to someone with medical knowledge.

I would try and get an appointment with your GP or speak to NHS direct. You could call NHS Direct now - they can get someone medically qualified to call you back.

 

[xxlou_lxx]

yeah good idea 😉

 

[Catwoman76]

Perhaps ur right, its scary as anything 😱 like flutters that take your breath away but constantly! maybe if i keep not taking them for another couple of weeks and my levels go to what they naturally are then they will be able to tell if I actually need them or not. I think they get stuck in the thinking that once your on them then thats you for life.... I was put on them during pregnancy... Im not pregnant anymore haha surely there are exceptions to the rule?? 🙂

Hi Lou Whilst at work yesterday I came across the named medication. The reason I looked at your thread was because, I too get these palptations, flutters that also take my breath away. I have mentioned it to my doctor before, but he said only if I pass out with it, or feel very ill then its a problem! I am also losing weight, about 3 or 4 people have said ' you have lost weight'( over a period of a few weeks) I haven't thought much of it, but I have been weighing myself at work for 2 weeks and yesterday I saw that I have lost a little more. I am always falling asleep in the evening, very very tired, but BS not low.
As others have said the best place is your doctor,Pharmacists are very good, but they would advise you seek help from your doctor. I hope this problem gets sorted out very soon and you start to feel much better. Take care Sheena

 

[Newtothis]

Hi Lou Whilst at work yesterday I came across the named medication. The reason I looked at your thread was because, I too get these palptations, flutters that also take my breath away. I have mentioned it to my doctor before, but he said only if I pass out with it, or feel very ill then its a problem! I am also losing weight, about 3 or 4 people have said ' you have lost weight'( over a period of a few weeks) I haven't thought much of it, but I have been weighing myself at work for 2 weeks and yesterday I saw that I have lost a little more. I am always falling asleep in the evening, very very tired, but BS not low.
As others have said the best place is your doctor,Pharmacists are very good, but they would advise you seek help from your doctor. I hope this problem gets sorted out very soon and you start to feel much better. Take care Sheena

You're weight loss could be a result of stress and anxiety; this can also cause palpatations. Amanda x 🙂

 

[newbs]

I too am on thyroxine, have been since 1993, and I get regular palpitations. It is scary, a really horrible feeling, but gp says it is nothing to worry about and quite common (easy for him to say though!).

 

[trophywench]

Firstly - how are your BGs? - before diagnosis, I had terrible palpitations. And obviously lost a lot of weight. I never seem to hear people mention them these days, but I was told at the time it was 'absolutely classic'.

There are also other Thyroid drugs, but you would probably need to be seen by an Endocrinologist in order to get both your FT3 and FT4 levels checked (as many GPs just won't authorise these) as well as the usual 'TSH' test that they do, to see if those would help. They are supposed to do your FT4 level at the same time as they do the initial TSH test - but as you say when yours were done you were pregnant so you might be right about them being different now. I don't know.

Levothyroxine incidentally, is synthetic T4.

As I understand it, and my knowledge is basic I stress! - if the FT3 and FT4 are not 'in balance' this can give the result of falsely changing the TSH level - so if that's the case - they might land up giving you treatment for the wrong thing - ie to just reduce the TSH and not the thing that's CAUSING it to appear high.

http://www.thyroiduk.org.uk/tuk/about_the_thyroid/hypothyroidism.html

http://www.btf-thyroid.org/index.ph...n-tests&catid=21:about-the-thyroid&Itemid=151

Or it may be a combination, that your TSH is a tad high anyway PLUS the FT's aren't balanced.

I'd rather you went back to your GP and explained again how you feel and why it's affecting your life, then if he shrugs his shoulders, ask to be referred to an Endo because clearly summat's up and if you do need T3, that can only be prescribed by an Endo on an indidividual basis.

Or as has been pointed out above - and is pointed out on various learned websites regarding Thyroid treatment - it isn't 'normal' so needs investigating anyway to rule out any other possible reason for the symptoms.

 

[vince13]

I was very interested to read this thread. My TSH level last (6 month ago) check at the Drs was 6.3 and this time was 7.1. My consultant endochrinologist at the hospital, whom I also see every 6 months, says until my TSH level approached 10 he wouldn't like me on any Thyroid drug.

My Dr this time prescribed this drug at 50mg as a result of my rising TSH levels but I went to see him and queried this, citing my Consultant's comments. Dr says 10 is very high and he would be interested to hear why the Consultant wrote that (he always copies my results to my Dr in a letter so Dr had the same comment given to him). However Dr took the new thyroid drug off my prescription until he hears from the hospital and, reading this thread, I'm very glad indeed that he has been swayed by what I've told him.

 

[trophywench]

Aaaaaaaaaaaah but yes but no but.

What was your TSH when you were 100% well and bouncing with health? - because you need it to be at that level.

ie they are all working on guesswork because nobody has it tested when they are well, do they? and as long as you don't have symptoms like tiredness, weight gain or your hair falling out,etc, then that might be OK.

The fact remains that the vast majority of humans seem to exist between the levels of 0.2 and 4.5 - and it's an absolute enigma why someone decided that 10 was the magic number .....

 

[vince13]

Good point TW as I never knew what my level was when I was 100% (was I ever ?) but about 18 years ago many miles away from here and many years away from Diabetes, my then Dr said they had to keep an eye on my thyroid function as it was under-active. Nothing more was done, we moved house, my then husband died, I subsequently re-married, we moved to Norfolk, grandchild was born and we moved to Somerset - I got diabetes and the thyroid thing came up again. Heyho - hindsight is a wonderful thing. It's the old "if I'd known I was going to live this long I'd have enjoyed myself far more" (actually "I'd have looked after myself better" but I like my quote more...........

 

[trophywench]

Tee hee, I like that. Your version I mean!

To be honest, I feel a lot better even on a minute dose - 10mcg.

I was always cold and could have slept for England - always felt bleurghh - but never realised how bad I did feel, till i didn't feel bad any more! so I think I def need a bit of help there - and mine was about 8 point something.

So the GP prescribed it to start me off, and then my next result came back at 3 something again. Maybe the 8 something was a glitch. But anyway I digress - just after I started the tabs and before I had the next blood test I saw one of the other GPs - a lady GP I see for lady stuff - and she was plodding through my results and said without looking up - 'Oh - your TSH is 8 whatever - we need to increase your Thyroxine, remind me before you go!' so I then had to explain, 'No I've only just started it last week', before I could whip me drawers off and get down to what I was there for.

 

[xxlou_lxx]

well doctor (gp) was no help, so I am resorting to waiting until april when i get my diabetic review
Ive already mentioned ive not been taking my medication... well I am totally knackered, i have awful dry cracked hands and cold all the time its horrible my hairs normally brittle anyway so its no recent issue... I am not taking these pills again unless something can be done about the palpitations... I hate when people dont listen to you... and i wonder what they are paid for sometimes

surely if i needed the pills then palpitations wouldnt even be an issue?? cannot find any decent literature anywhere!! only patient info which is totally generic and not specific enough to provide any answers! Grrrr

 

[Steff]

Hi Lou,

How are you x

 

[xxlou_lxx]

Hi Lou,

How are you x

Not good, I really wish I wasnt a diabetic... I wish I could start my life over again without it! I started taking 25mcg again and not as tired thankfully and no palpitations, but of course there is always something else.... My bloody hands. Which is a long standing thing and i wondered bout neuropathy cannot do anything with these things and woke up this morning with very tight and extremely swollen to the point they were white, numb tingly sore as hell hands. Feel like whats the point in trying to become a nurse? Im 28 and I am falling apart! i cant even take oral anti inflamatories because i cant tolerate them as i have a gord (??) problem and a big lump feeling in my oesophegas, so im having to suffer in silence... In the last 6 months everything has went belly up.... cannot stop crying! I just want to be healthy i do not give a hoot about possesions or money I only want to be happy and healthy for my daugghter cannot stop crying. wats the point????

 

[margie]

Hi Lou - sorry you are feeling so low, your crying could be due to your underactive thyroid - there is another thread about how it can cause depression. Not that that helps your right now but if it is the cause you should start to feel a bit better when the meds have kicked in.

Don't forget you can post here if you feel the need to rant.

I hope things start to turn around for you soon.

 

[MargB]

Lou, did you check out those links someone gave you earlier in the thread?

I know you used to be able to contact a fellow sufferer on the Thyroiduk website and share/get information. Stress that they were not medical people but had been through the hoops too.

Like almost everyone else, just stopping thyroxine is not a good idea and I think you have discovered that.

Have you been checked out by Cardiology? You could have an irregular heartbeat or similar which was underlying until you started taking some drug. Could be the thyroxine, could be something else, could be a combination but it needs checking out.

Do you have a DCN? Can your GP refer you to a Diabetes clinic - especially with the skin/hands problem?

Best of luck but don't just wait - but I know pushing yourself to do anything when your thryoid has packed in is almost impossible! No energy to think sometimes.