Unwell

[Bellmitzi]

Hi does anyone know I’m taking 125 levothyroxine daily 3 weeks ago diagnosed with a DVT been really unwell on two injections daily an between 6/10 mg warfarin will they clash as I’m really weak freezing then chills ty

[Aurealis]

I believe the coldness is a side effect of Warfarin, but if possible it may be best to keep your thyroid dose stable (as long as you feel well) because if you change it the warfarin dose may also have to change.

[Bellmitzi in reply to Aurealis]

Hi thanks for your reply I couldn’t get back on last night as my internet went off I’m cold with thyroid as well my surgery at minute is a nitemare when I’m asking about mixing they are telling me speak to wafrin nurses I’m really fed up ty

[silverfox7]

Long time ago now but I have a PE several years ago so was hospitalised for a week. So I kept thyroid meds on waking as I've always done and Warfarin at 6 pm asadvised by the hospital. My return home was a problem as inches of snow and roads not gritted but I got there to find my dons struggling to get the central heating to work! Needed a new boiler but had fan heaters as a back up. Now when I wasin Levo I was always complaining about the cold but I was fine and the plumbers changed the boiler the next day pulling out the stops for me. But after boiler working I have no problems with being cold. I was kept on Warfarin for three months and by then I'd had extensive testing to find the reason for the clot. I was given a complete bill of health ado they decided the new hip I'd had before was the culprit. Those days I felt the cold badly so I'm sure I would have remembered if that had been a problem.

I don't thing the injection you are taking would be a problem as it's things going through the stomach that can affect our medication. However I think the weather has been particularly cold recently and felt even more so when following the heatwave we had. What is you temperature like? Are they keeping a close check on your Warfarin? I was being tested every other day once out of hospital.

[Bellmitzi in reply to silverfox7]

Hi so sorry now I’m replying but my internet went off I’m at the hospital nearly every day one day off I’ve had in 10 still feel dreadful but each nurse is saying different I had a phone call fri wafrin had dropped so she said I was goin start just injections today that hasn’t happened wafrin but no injections now I have the shakes in my body they are saying nothing to do with wafrin or withdrawal of injections as I haven’t had one since sat at my whits end as surgery no use at all thanks I have got some blood results which I’ll post ty

[Aurealis in reply to Bellmitzi]

Many people do feel cold on warfarin (see google). I felt sick too. I was only checked weekly. I asked to see the Haematologist in charge of Warfarin treatment and found him very helpful (he used google to answer some of my questions too, much to my other halfs disgust) though there was a bit of a wait to see him. I didn’t find nurses that knowledgable about the wider issues but were good at keeping INR in range. It’s no good asking them questions outside their area of expertise I think they say warfarin causes no problems so no-one asks for an alternative - but there are alternatives

But it is also possible that your thyroid meds need adjusting. Such a pain when there’s more than one thing going on. Good luck.

[Bellmitzi in reply to Aurealis]

Hi I know I’m on many other tablets I’ve been given scripts which hospital pharmacy give the first time I was really ill then I complained but when my new lot were due a different pharmacist in the hospital rang the wafrin nurses and stopped the script I was sent back up for a different one but they are taking the injections away then giving back and wafrin being adjusted I know this has to happen but it’s definitely affecting me I’ve had the shakes all day I’ve no idea who to ask as everyone keeps passing the buck thanks for taking time to reply I’m very greatful

[silverfox7 in reply to Bellmitzi]

Sorry you are having such a tough time. So are you taking anticoagulants by mouth and injections. I never had that. I was sent home from the hospital after the op with injections having used them in hospital under supervision to prevent clots . When I got to the end of them was when I got the PE. So in hospital for aweek to monitor and to start me on Warfarin then but in isolation with the Norovirus. Things didn't go well then as the doctor was to give me the Warfarin but as I was isolated she had to make me the last visit of her day so it was often after 11pm! Then I paid a daily visit to the Warfarin visit once I was home but had to go in ambulance due to the weather apart from anything else so was always ready for 7am but rarely home till mid afternoon! I only live 2 miles away! So that was a nightmare as only going for a finger prick! Even the lady who often took me home said it would have been better for her to take a nurse round all of the patients. Then I found I should have been having venous blood taken! It was so horrible not knowing if I could get any food from the kiosk and when I did there was no counter to put the food on so put by bag around my neck like a horse and had to ask them to put the sanwhich in. Then I think I went twice a week and eventually I got the nod to travel by bus as the snow had gone. Eventually I got stable enough to go once a week till iwas taken off. But my problem on crutches was getting there and back but you seem to be not having the same experience. Not sure why your INR dropped, did they give a reason? You don't sound to be well looked after and that could account for you feeling rubbish. Are you only being seen by nurses now and not a doctor? I would ask to see one as you are being told one thing but often it's not followed up and are confused as to what they are doing. If they say no then ask for it to be put in your notes and have a friend with you if you can as a witness. You are more likely to be listened to then. The only reason is I can thick of for putting you back on injection is that they think the problem is that you aren't taking your medication properly but have they queried that with you. It's just as likely that they could have given you the wrong strength medication but you need some answers as to what your symptoms are suggesting and if they are normal following a blip and will improve. My son used to get annoyed when my 6pm alarm went off but it was also a nudge for him to bring me a glass of water! Thankfully he realised how difficult it was for me to get up out of a chair and get my crutches organised! I would ring the hospital today and say you are struggling and see if you can get more help understanding what is happening. That way you aren't being confrontational but it will make them look more into your problems, explain more but also tell you what to look out for as well.

Let me know how you get on.

[Bellmitzi in reply to silverfox7]

Hi awe you’ve had a tough time too so hope your feeling well now I’m really worn down at minute I actually look well this is my problem but I did say yesterday just because I look well I am not I also said why tablets again when I received a phone call fri to say I was just goin to have injections I had two clots one in calf and one went behind my knee yesterday she said you have had a clot on the lung I said no ones told me this she pointed to her notes I don’t think so at all no ones given a scan that area just my leg but I am wondering now what have I been treated for I had to visit the ward on weekend as clinic was closed they give me my notes to bring home I read them all and photographed one script was cancelled and marked error which I’d taken for a week an was really ill so my sons are now goin mad 😡 understatement really but I want answers tmrw thanks for the reply I had also complained for weeks to go over the telephone of pain and swelling in my leg he didn’t even give me a face to face then I went abroad two weeks later this I just want to feel better ty and sort for moaning