I wonder if anyone can give me some advice. I have had APS for 20years and suddenly have a major problem. It started with my INR going up to 6, accompanied by me feeling tired and weary. I had some blood tests which showed that my BNP, which is to do with the heart, was 2700, which is very high. The tests also showed that my thyroid levels were high. I have been prescribed Propranolol 40 mg and referred to Endocrine team. I remain weary and extremely worried. I would be grateful for any advice.
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I’m just looked through your last post to try to get myself up to speed, but you may have to help fill in a few blanks if you feel it might help direct the conversation to a better outcome. ( always our goal !)
1. Your last big hurdle was a knee surgery?
2. You do not currently have a hematologist? ( is that correct?)
Assuming you do not have a hematologist current, I would really encourage your GP to refer you to an APS specialty rheumatologist.
I personally believe that Professor Hanna Cohen could be the better bet, as appointments seem to be firmer and steady once established.
She is marvelous at making very timely referrals to colleagues if she feels anything else needs investigation that could be contributing to you health problems. ( I read you are in the north of England, so hoping you could get to London without too much trouble.)
Any medication you could begin for thyroid could affect the INR. ( a reason to have a hematologist help steady the ship, make suggestions, etc.)
Same goes for heart. I feel you need to have an APS specialist with years under her belt to help take you in hand. ( under one system- UCH.)
Thank you Kelly for responding to my predicament. You are right, I don’t have a haematologist nor ever have even when under Professor Hughes in London so will discuss that with the GP. I’m due to have some more blood tests on Tuesday so , when discussing the results with the GP, I will discuss a referral to Professor Cohen in London. I’m truly in panic mode about all the sudden problems so again thank you for your advice. Many thanks.
I’m sorry u r struggling so. It’s very frustrating. I hope it’s sorted soon.
When on warfarin I found the higher my INR the better I felt. The reason I had to change to Apixaban was because I had 2 stays in hospital with an INR of 19 and 20 Obviously it was extremely dangerous but I felt amazing. It would be interesting to see how others felt with higher INR; As it may not be the INR causing your weariness.
Propanonol is used to treat heart issues, high Blood Pressure, Migraines and anxiety. I am in fact on it for a heart condition (Long QT Syndrome). I don’t know why you are on it so can’t really comment, however it it a beta blocker and it’s job is to slow the heart rate. This can cause people to feel weary, tired, especially when they first start taking it. NEVER alter your dose or stop taking it without medical guidance.
BNP is a blood test to measure the levels of a special protein that is made in our hearts. The level goes up if we are in what is known as heart failure. (There may be other causes) don’t panic, people can live good live with heart failure, it does not mean ur heart is going to fail you and stop - it means there’s a problem and you need to be monitored and treated - hence the beta blocker then?
With high thyroid, you may experience a range of different symptoms including anxiety and rapid heart rate, you may have dramatic changes in weight usually loss but some people actually gain weight. High thyroid can be treated but MUST be overseen by an endocrinologist.
An endocrinologist is a specialist who looks after those with issues - simply the endocrine system is a network of glands throughout the body that make and distribute hormones. We think of hormones being to do with our sex however they are important throughout our body - essential. Insulin is a hormone as is thyroxine. When out of balance they send the body haywire just like a ladies hormones go haywire when they are pregnant. So, if ur thyroid is not producing enough hormone or too much then your body will be haywire and you will consequently feel ill.
You have three things going on from what you said:
APS and INR issues
Heart issues
Thyroid issues
But all can be helped with good management and it seems you are being looked after and will be monitored.
I advise people to prepare for ANY appointments by getting paperwork ready and going armed with a few important questions (in order of priority). If you can take someone with you to back you up and jot down the consultants answers that would be helpful. Being prepared means you get the most from your short consultation.
I hope I have helped. Let us know how you get on. 💋 x
Thank you WendyWoo50 for replying to me. Your reply contained lots of useful information, especially about the heart failure as that is my greatest fear. I feel as if I could cope with the high thyroxine level as it could probably be treated but heart failure just sounds so frightening. I’m due follow up blood tests on Tuesday and INR check on Friday and presumably the results of those will determine the next step. Hopefully there will have been a little improvement. Many thanks to you again.
Hi, I am glad your results have been picked up and noted, with Thyroid matters on board, we do also at times suggest joining Thyroid UK on this platform, they are supported by a fantastic UK charity and it is a very well administrated forum. When you say Thyroid levels are high do you men your TSH? It is important that the Endocrinology team work out quickly if you have Hyper or Hypo Thyroid problems, often triggered by Hashimotos, which can make it swing in either direction. I have this, and ended up with extreme heart palpitations ad a very slow Thyroid, which settled down when correctly medicated, make sure they check your iron levels, which also effects how your Thyroid works etc. MaryF
Thank you Mary for your input. I have to admit that the thyroid levels weren’t actually given and I was in a daze after hearing about the BNP levels so never asked. I am seeing the GP next week so will clarify that. The thinking is that controlling the thyroid will then control the heart problems. I’m having more blood tests tomorrow so we’ll see if things have changed.
My name is Jackie and I also have APS & Hashimoto’s. I have been taking propranolol for many years now. I currently take 20mg in AM and 20mg PM. Propranolol is a very old drug, if it were seriously bad for humans it wouldn’t have been around so long or it would have received a black box warning. To my knowledge it has not had any issues or black box warning.
Like many APS patients I get migraine headaches that literally knock me unconscious. If I am without Propranolol for 3days, I am guaranteed one of these cluster migraines. Other uses for it are stage fright and it’s one of the drugs they screen for in athletes.
In the beginning as your body gets used to it you might have little dizzy spells if you get up too fast. That’s it. So no burpee’s in your exercise class 😎
Thank you Jackie for your reply. Your experience of thyroid problems is very valuable so I appreciate your input. Propranolol is a new medication for me so I hope it is effective, blood tests tomorrow may reveal how things are going. Once again, thank you for taking the time to respond to me.
I have had a lot of microembolies during the years so I have today Pulmonary Hypertension and leaking heartvalves. I also had very high bloodpressure before I started Warfarin and had an Endocrin professor who treated me very well.
The microclots and embolies must have been before my Warfarin started as after an INR on 3.5 - 4.0 and selftesting very often I have been fine. I am 78 and live in Sweden. Have Specialists around me and have had APS for many years but diagnosed in 2002 when I had a TIA and was in hospital. Some of us get bloodpressure and heart-symptoms by APS.
Read "Sticky Blood Explained" by Kay Thackray who has APS herself. A very good book about APS.
Thank you Lure2 for your reply. I was interested to read about your leaking heart valves as I have one as well. I’ve had it for about 15 years and has always been stable, however I haven’t had an echocardiogram since 2020 and should be due in November. I spent yesterday evening in A &E as my ankles and legs were more swollen than usual and the doctor I saw said that he would refer me to Cardiology so we’ll see what that discovers.
Again, many thanks for taking the time to reply, I appreciate it.
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New to APS and worried
Getting very anxious now.
Very new to this...
Why cant I stop worrying
