No longer alone.

[Vivante]

I have read several of the posts and now realise there are many folk have experienced the same soul destroying weariness that I have felt and am still feeling. I could not understand why I have felt so exhausted, when I first saw my GP, he referred me for counselling, I tried a few times, it did not work. I saw another GP who referred me for a blood test, I had hypothyroidism. I was put on Thyroxine, more and more tests showed a hole in the heart, which I was born with. It went on, open heart surgery in 2006. It goes on. I now have osteopenia.

Only when groups get together and share experiences things may improve. I hope the medical profession will know we are not imagining what is happening to us. I now know I am not alone.

[marram]

Hello Vivante. Thank you for sharing with us. That is how we all feel, even those who have understanding families feel better to know that there are people who have felt what we are feeling, can help us to cope with it, and never judge us for what we are not.

Life cannot be easy when you have an illness which can sap your strength and sometimes even your will, but with support many on this forum - myself included - have found the strength of mind to demand better treatment and have found hope for the future when once it looked only bleak.

I hope you can get stronger and enjoy the advice and companionship which can be found here on Thyroid UK Support.

Marie XX

[Vivante in reply to marram]

Thank you so much. I honestly felt I was no use to anyone. I have lost faith in the GP,s perhaps that will come back again.

Keep well.

[puncturedbicycle]

Yes, it is a comfort to know that you have the support of so many other people who are going through something similar. I feel the same way. This site has given me confidence to be persistent with my gp too.

May I ask how you were diagnosed with the hole in your heart? I was told by two private doctors I could have the same thing but my gp says it all sounds normal. (I'm trying to go down the nhs route to avoid having to foot a cardiologist's bill myself. It's one thing to pay for the private doctor but the tests will be v expensive.) Going in for another test next week to see if I can persuade a different gp to listen.

[Vivante in reply to puncturedbicycle]

Thank you for your reply. I had a heart murmur for years, I was told to carry on as normal, no problems, I had been experiencing the tiredness, I was putting on weight, my ankles were swollen, I was tired most of the time, I slept in the afternoon, I found it difficult to get organised in the morning. I had seen the GP several times, they knew I had the murmur. I decided to try one more time, even then I was regarded as being in need of counselling. I was not prepared to continue. I saw another GP who referred me for the tests. All done on the NHS. I had an ECG, everything went on from there.

This has been going on for many years. I knew I was at risk of osteoporosis, I spoke to another GP who asked if I had fractured my hip, I said no, he replied I didn't need a referral, I saw the practice manager, complained, everything went on from there.

You need an ECG. Not all NHS doctors are as helpful, in the same way as the private doctors. You must insist upon the ECG. You have been told by two doctors, that is enough, push for it. I have I have osteopenia and the lumber area of the spine, the risks of fracture has increased. Do you have any other medical conditions apart from the thyroid? Are you on any other medications? I will help as much as I can.

Stick at it.

[puncturedbicycle in reply to Vivante]

Many thanks Vivante.

The strange thing is that a number of years ago (16yrs?) I had an ecg for palpitations and everything was found to be fine. No heart murmur was diagnosed. Then last year I saw a private doctor about my thyroid and she listened to my heart and said "You have a murmur you know." I said no, I didn't know about it. She said I should have an echo just to make sure all was well.

I asked my gp and he heard no murmur. I went back to the thyroid doctor and she double-checked it and said yes, it was still there. Unrelated, I needed to see a private gp while I was abroad (upper resp infection) and asked her to have a listen and she confirmed that yes, I have a very faint murmur and I need an echo.

I totally understand that there are usually no complications with this problem (my mum has had it all her life) but surely after I tell the gp that I'm tired, I have palps, oedema, etc, it would be good to know if it is an 'innocent' murmur or a hole in the heart, damaged valve or whatever.

I can only guess that it developed after the ecg I had years ago, poss as a consequence of uat.

My reply above is a bit muddled. I've made an appointment with a different gp so she can listen to my heart in the hope that she will send me for an echo. I had a phone appt with her last week solely to organise my thyroid meds and tests, and at the last moment I thought I should ask her what she thinks about this heart murmur business. She said of course, if there is a murmur you need an echo. I only hope she can hear it. Apparently it is very quiet and the second doctor who heard it said "whoever diagnosed it is a genius". Good news that my doc is a 'genius' but I guess that means whoever else hears it has to have some level of genius too, or at least v good hearing!

[Vivante in reply to puncturedbicycle]

I can understand now a little more. I have had two echo's. Something else, do you suffer from migraine? Not everyone knows of the link between migraine and a hole in the heart, it is known as a PFO. Push for it.. There definitely is the need to go further. I was told when I had my surgery, the hole was as large as a ten pence piece. My weight went over 11 stone, I could not put my shoes on and in 2004 I could not walk to the end of the street. When the hole was repaired, it was found I had two leaky valves. The surgeon used the maize procedure, it was successful in closing one valve, but not the other. My cardiologist is happy with things as they are at the moment, so am I. When I had the surgery, the hole was closed and after suffering from migraine since I was a child, they cured me of the migraine.

Push for it, get all the tests done.

I am still coping with the thyroid and from being someone on the outside looking in, I now am able to come in. I am so grateful I found the group.

God Bless you all.