so angry can i demand medication change? - Thyroid UK

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so angry can i demand medication change?

mandy72 profile image
23 Replies

you may have seen my recent posts about heart rate and breathing

anyway i looked up levothyroxine and fast heart beat and came across a forum saying that a fast heartbeat is one the more serious side effects while taking levothyroxin

now i wonder if the fast heartrate has something to do with my breathing and oxygen levels dropping now and then

anyway im going to the dr tomorrow on and emergency appointment and asking for a change of medication as i feel all the heart and breathing problems have been since being on the throxine and im scared for my heath now

i admit ive allways been overweight and a smoker and did get out of breath walking ect but now i just sit here and its like ive run a marathon

where do i stand if dr refuses?........im not taking thyroxine tomorrow too dam scared now

medschat.com/Discuss/Levoth...

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mandy72
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23 Replies
helvon profile image
helvon

Hi Mandy I know its infuriating. On drugs.com levothyroxine side effects I have 21 out of 23 of the less common side effects, (where you should consult your doctor) 6 out of 8 of the rare side effects( where you should get help immediately) and 22 out of 27 less common side effects which apparently subside with time. I am taking this to my GP on my next visit in the hope they will prescribe something else. might be worth doing yourself. hope this helps . love and prayers xxxxxxxxx

mandy72 profile image
mandy72 in reply tohelvon

thankyou ill try and print that off tomorrow and mark my side affects im too scared to continue on levothyroxine now :(

Duchy82 profile image
Duchy82

I used to get a racing heart and had more breathing problems (im asthmatic anyways) when i was undermedicated so it could still not be the levo but its definitely worth discussing with your doc

galathea profile image
galathea

I had breathing problems and heart rate racing, Doctor found nothing and sent me to the gym.... Where I felt terrible.

All sorted now, Turns out I have exercise induced asthma, This was diagnosed when I was giver a methacholine challenge test at the hospital. I was always ok in the docs because I hadn't been exercising. I never realised that if you have asthma, you can breathe in fine, its breathing out which poses a problem.

When I exercised, or even when I walked up a slight hill, my heart used to beat like mad, trying to pump round non existent oxygen. In my case this caused a problem because I have a hypertrophic cardiomyopathy diagnosis so when my heart speeds up, the blood pressure drops.

I'n not totally sure I agree with the hypertrophic cardiomyopathy diagnosis, I, am due for tests on the heart in a couple of months time, but I feel fine now. It will be really interesting to see if my heart has got smaller,. Have been on dessicated thyroid meds for a couple of years instead of the levothyroxine I had for 20 years plus. I think the enlarged heart was caused by mucin..... A result of undertreated thyroid.

Will post my results when I know......

G xx

mandy72 profile image
mandy72

i cant win tried going to bed yet again only to struggle with breathing (this is 3rd night out of 4) i put my oximeter on and carried on trying to sleep to find my heart rate is dropping down to 52 and my oxygen at around 94 and im struggling to breath so i get up and now im sat down stairs paniking...part of me wants to go to the hospital and part of me dont want too i know ill get put on a machine and a million questions asked and because i have no chest pain theres nothing wrong with me

i see the nurse yesterday and she didnt seem overly worried and we did an asthma questionare and i passed so its not asthma she says possibly anxiety or depression but i feel theres more too it

chest x rays seem to come back fine too

it feels like my throat has closed up sometimes

i cant go on like this im exhausted i really am and with having kids i need some sleep at least

galathea profile image
galathea in reply tomandy72

It took 4 years for them to diagnose the asthma... I kept complaining of shortness of breath..... Ask for a methacholine challenge test.

mandy72 profile image
mandy72 in reply togalathea

they wont do tests as just got over a chest infection so have to wait 6 weeks

patsypat profile image
patsypat in reply tomandy72

I had these symptoms some years ago.After a lot of wrong diagnosis, I was eventually sent for a scan on my thyroid.This showed it had grown and was pressing very badly on my wind pipe which was causing a build up of toxins in blood.It was fine when standing, but on laying down it caused the compression.I am not saying this is your problem as well, but perhaps you could benefit from a scan.All the best.

mandy72 profile image
mandy72 in reply topatsypat

im due a throat scan 27th of this month

Janinit profile image
Janinit in reply tomandy72

Dear Mandy it sounds like you are under medicated to me. I had angina, palpitations with racing heart and breathlessness when I tried to do simple things like climb a few stairs and walk up a slight incline. Also had anxiety and depression and lots of other less worry some symptoms of hypo while my bloods showed a normal TSH. All my symptoms have improved dramatically and I have lost weight since starting t3 two years ago. Perhaps your doctor could send you for an appointment with a proper endocrinologist.... best wishes that you get sorted soon...

mandy72 profile image
mandy72 in reply toJaninit

ill ask about a referal when next at drs.....i know this is wrong and i shouldnt have agreed with the dr i seen today but he suggested i stop the meds for a week so we can see if it is side affect or not and if my heart rate and breathing settle they will change meds...but i feel the palpatations shortness of breath are down to the thyroxine and the dr has agreed and said it could allso be anxiety

i get palpatations while sitting doing nothing and while in bed trying to sleep

It's really rotten the way you feel I have been there and it is grim to feel like that but,if you have mild/medium copd it is expected that oxi levels can fall to those levels of 94 when supine,it is always less when laying down. Hospitals usually take notice when oxi falls to 88 or less so got a long way to go yet! 95 or over when awake is considered normal although low ish end of.if you have cold or virus or bit under weather this can make it drop too as well obviously as panic or anxiety.try hard to relax I know it not easy,and don't get toooo worried about those oxi figures just yet.Hope you have now got some rest and praps things will seem a little better in the morning.hugs for tomorrow.

mandy72 profile image
mandy72

i managed a couple of hours sleep but feel like i hit the bottle last night really bad head

heart rate seems to spend a long time in the 50's and oxygen is dropping more and more into the 80's

thing is when i get to the drs they stick the oxymeter on and stats are good so cant win......

Jackie profile image
Jackie

Hi several things spring to mind. it can take a while for the body to adjust to any thyroid treatment.Make sure you urgently have TSH, T4 and Free T3 tested. make sure your iron/ferritin is in range, B12 and Foliates, well in range, D, hormonal in range ( or corrected calcium test if not )The other good test is diabetes, hormonal and autoimmune.

Regarding the heart rate. If intermittent problem probably Atrial fibrillation AF onset can be brought on by thyroid. For this the only 2 reliable tests are a simple manually heart rate check( pulse), 3 times a day including when "funny", chart after 2 weeks, if pattern of uneveness, at one reading,, take to GP and ask for a home monitor, 24hours or better 7 day. Not too serious, common but a life time condition which needs treating. If found positive, a Cardio and an Endo need to look after you. Do not panic, unless H.R ( pulse) reaching 180 and staying there!

Best wishes,

Jackie

mandy72 profile image
mandy72 in reply toJackie

im seeing the dr who started me on thyroid treatment next week so will have a chat to her about the tests ect

JudyS profile image
JudyS

Can I ask, are you also on blood pressure medication? After the doc put me on Amlopidine I had the same problem. I couldn't sleep, I had no energy, I couldn't exercise and my stress levels shot through the roof, AND I ached ALL OVER, all the time. She refused to believe it was the Amlopidine causing the problem but one day I'd had enough and decided to go and tell the doctor that I couldn't take these things anymore. I happened to see a locum who took me off them immediately and within three days I was feeling back to 'normal' and the aches had gone and my heartbeat settled to a normal range. It was racing at a minimum of 100 bpm at rest while on those darned things.

mandy72 profile image
mandy72 in reply toJudyS

im not on any blood pressure meds as far as i know blood pressure is fine

spring13 profile image
spring13

you have misunderstood the side-effects information, its not the thyroxine tablets themselves which cause a raised heart rate, its having too high a dose. A blood test will tell you and GP if the dose is too high.

mandy72 profile image
mandy72 in reply tospring13

bloods were taken last friday and tsh 5 was only on 50 mcg levothyroxine

PinkNinja profile image
PinkNinja in reply tomandy72

That's not too high a dose. Your TSH is still a little high. It could be that that's causing your racing heart. It can happen because you don't have enough thyroid hormone, especially in people whose iron and and ferritin are low or low-normal.

Low thyroid and low iron could also affect your oxygen levels. This really does need looking into though. Are you the lady with the prolonged QT interval? If so, that won't be helping. A prolonged QT can cause a rapid heart rate and arrhythmia. It can be caused by low thyroid hormone.

Whatever the cause, I hope it is sorted out soon!

Carolyn x

mandy72 profile image
mandy72 in reply toPinkNinja

yes im the one with prolonged QT

im not even sure if my dr's check iron and ferritin all i know is my breathing is worse than ever my heart rate races and drops and my oxygen levels have been dropping but typically was ok at the drs

tonight i dont feel right at all my throat feels like its closed up but can still swallow my breathing is right off headache and feel really sick

PinkNinja profile image
PinkNinja in reply tomandy72

Oh gosh! That's awful :(

Please do ask for serum iron and ferritin to be checked. It is especially important given you have such problems at the moment. Try to get the results too and we can help you to know whether to supplement or not. You mustn't supplement without first getting tested though. Too much iron is as bad as too little.

I hope you find the answers soon

Carolyn xxx

mandy72 profile image
mandy72

no bed again tonight my breathing is bad i dont know if its anxiety or what but im at my wits end with this ive had a few hours sleep over the last few days my head hurts and i feel really sick to my stomach......might call the ultrasound department tomorrow and see if i can get my scan early so i can rule out a growing thyroid.........just wish i could be heard i cant breath yet because stats are good im ok im getting more and more down as the hours pass :(

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