Mitral Valve

[Kaylee1211]

This could be a long one, so I apologise in advance.

In 2013 I was diagnosed with thyroid cancer so had the thyroid removed and had radioactive iodine. In 2016 it came back in the lymph nodes so I had 5 removed from “level 7” since then things haven’t been quite right.

I used to run 5k quite easily but since being ill I can’t. I’ve been to the doctors countless times and am always told I have asthma. I don’t have asthma.

In 2017 I had a couple of tests on my heart and they found “mild tricuspid and pulmonary regurgitation” also “slight mitral regurgitation with a borderline prolapse”

I haven’t really done any strenuous exercise quite simply because I can’t.

Knowing I don’t have asthma I thought i might just be really unfit and need to build myself up again so started jogging. I can jog 0.1 miles before I have to stop because I literally cannot breathe. Something is definitely not right.

I suppose my main questions are...is the above something that gets worse? And is there a way I can still exercise without feeling like I am going to keel over after 2 minutes.

I’m only 32!

Thanks for reading 😊

[Rosanna75]

Good morning, Sorry to hear your story.

I have a question.

Did the doctor asked you to do any specific tests to establish you have asthma?

This is the only way to find out.

I had two heart surgeries, one to attempt to repair my mitral valve prolapse and the second one to replace the valve itself since the first one didn't work out and actually caused me a mitral stenosis

I also have asthma , but mine was certified by a number of tests done, and at some point the cardiologist was unsure if my shortness of breath was coming from my asthma or from my valve issue.

The best way to find out is by doing a stress echo, where they are monitoring your heart while you doing mild exercises

In my situation this determined that I had a problem with my pulmonary pressure that was heart related

Perhaps ask for this to be done and also ask to assess if you have asthma, as this is something that needs addressing anyway.

If it can help you , my shortness of breath was also effecting me in small activities around the house.

I was also feeling extremely tired and spending most of my days off from work in bed.

I hope sharing my experience with you can help a bit.

Best wishes

Rosanna

[Kaylee1211 in reply to Rosanna75]

Hello,

Thank you for your reply.

No tests, they just threw an inhaler at me.

My medical history is long, I understand that. But the doctors should know everything before chucking stuff at me.

I think I will need to go back to to doctors and ask them to do the tests, rather than asking them for the advice. I almost feel like I have to point them in the right direction!

Have you always had asthma or did you just get it? I’ve never had asthma so wondering if you can just get it at any point for no reason?

I am also exhausted! I put it down to my thyroid medication being at the wrong dose so the doctors did blood tests. They came back ok so that was it. Nothing further got done and I’m left to just struggle.

Thanks 😊

[Rosanna75 in reply to Kaylee1211]

I understand your frustration.My first operation wasn't successful as they repaired the valve too tight

I only found out becouse I was still feeling tired and short of breath and my family took me to a cardiologist In Italy.

I am originally from Italy.

The Italian cardiologist explained to me what happened and told me to monitor the issue as this would give me problems in time and that eventually I would have needed a valve replacement

The cardiologist in UK or the surgeon never told me anything

So I told them what the Italian doctor told me and they started to do more tests and monitor my situation every 6 months

After 3 years from first surgery they told me I had a severe stenosis and that I needed a mitral valve replacement

I am sorry to say, but this is my experience, in this country you need to be very assertive with the doctors as for some reasons are very superficial and they wait for things to go really bad before they actually realising that they need to do something.

With this in mind, moving forward, I will do things differently.

So, yes go back to your doctor and ask for more respiratory tests to be done.

This way your asthma can be identified

And also ask for a stress echo on your heart, you are only young and thy need to look after you.

I had my first heart surgery when I was 40!

I was diagnosed with mitral valve regurgitation when I was 37 more or less and my situation deteriorated very rapidly.

In your case, might be different, but ask them to check on you properly

Best wishes

[Kaylee1211 in reply to Rosanna75]

Thank you.

So sorry to hear of your situation but glad you and your family knew to do something about it!

Thank you, I will contact the doctors Monday. Now I have a plan of attack i can go in with that, rather than coming away feeling deflated with no answers!

[DizzyD in reply to Kaylee1211]

Hi there even though you have been told that your thyroid levels are ok this does not mean that they are at optimal levels. When told they are ok this usually means they are in range. Many people can still be hypothyroid, with symptoms regardless of TSH levels being in range. If you haven't already done so, I suggest you check out thyroid UK via HU. Most people on the site, myself included, have suffered for years due to being under prescribed or over prescribed levothyroxine having been told "your thyroid blood results are OK"!

Like your self I had my thyroid removed due to cancer (1992) at about your age. I was also told in the early years after removal of thyroid, that I had asthma (no testing). I did not and do not have asthma.

Every health problem I have todate, heart issues included, leads back to my thyroid hormone levels

Example too much FT3 converted from T4 (levothyroxine) or too little FT3 causes heart problems somewhere along the line.

Just wish I knew all this when I had my thyroid removed back in 1992.

You are young....educate yourself about your thyroid issue especially in relation to thyroid blood results. It could save you years of unnecessary and avoidable health problems.

[Kaylee1211 in reply to DizzyD]

Thank you!

Funny you say that. I was the picture of health before getting thyroid cancer and since then it seems like there has been issue after issue.

I have started to do some research into the long term effects of the thyroxine. At the time it was “you must over medicate to suppress the TSH or the cancer will come back” which being a young naive 25 year old I didn’t think anything of it. It’s just knowing where to look and what to believe.

I don’t like taking pills as an easy fix. To me they don’t fix the problem a lot of the time. Short term answer most of the time.

I’ve posted a couple of times on Thyroid UK but I think I need to have a proper read of peoples experiences. Most of the time I read them and can completely relate which is both reassuring and frustrating haha.

Thank you! 😊

[DizzyD in reply to Kaylee1211]

I also don't like taking pills but having no thyroid we need levothyroxine in order to stay alive but there are other options such as NDT but that's jumping the gun a bit.

The most important thing is your thyroid function numbers and getting them to optimal levels which can greatly improved your health all round. But you have to put the effort in which can be frustrating because there is no quick fix.

Having your levels suppressed is not very important, it's FT4 (free T4) and FT3 (freeT3) levels that really mean something but doc's ignore these numbers.

If you do visit thyroid UK site it's best to have your most recent thyroid blood results and post them on the site and people will interpret them for you. If you don't have a copy request, a copy from your endocrinologist or GP. Hopefully, they will have included FT4 and FT3 in your test. Not all doc's test these levels.

I get my tests done privately for £29 via monitor my health or from medichecks which is more expensive.

Sorry I bombarded you with information but I don't want you to end up with more weird unexplained health problems.

[Rosanna75]

Also, make sure that is not your thyroid issue interfering with the way you are feeling now.

[Qualipop]

I'm wondering what kind of thyroxine you a re on; artificial or natural. I don't have experience of thyroid problems but a friend has and he pointed me to a very interesting website which discusses the difference between the two types of treatment. It's called "Stop the thyroid madness". You may like to take a look

[Kaylee1211 in reply to Qualipop]

I’m not sure haha. I take what the doctor gives me. It’s levothyroxine if that helps!

I will take a look at that! Thank you! 😊

[DizzyD in reply to Kaylee1211]

The natural one is NDT...natural dedicated thyroid which was used successfully for many years to treat thyroid disorders, but then they introduced levothyroxine. Levo contains only T4 while NDT contains T4, T3, T2 and T1 similar to what a normal human thyroid produces.

[Qualipop in reply to DizzyD]

That would be why people insist that the natural thyroxin is so much better. I believe my friend has a type made from cows. He's now moved to Sweden and can't get it. He's worried because the synthetic just doesn't work for him.

[DizzyD in reply to Qualipop]

Here I UK one can get NDT via a private endocrinologist which is where I get mine. I have no idea what Sweden's health care system operates re:NDT. It can also be obtained from Thailand called thyroid S but not sure if that source has dried up recently. Has you friend considered taking liothyronine (T3) along with his levothyroxine (T4) that's the next best combination if NDT is not available. Many people are having to switch to levo and liothyronine because NDT is difficult to come by now. He could also research EFRA a company in Canada who supply NDT to medical professionals around the world. Not sure if they supply it to non medical people though.

Hope that helps but should imagine he already knows what I have told you

[Qualipop in reply to DizzyD]

Thanks, I'll pass that on to him but I'm not sure whether he'd be allowed to import it .

[DizzyD]

Yes it's made from pigs or cows thyroid gland.