Any Ideas or Suggestions would be great

hey

by Tracey_E - 2023-05-03 14:59:53

I'm sorry you are still not feeling well or getting answers! How frustrating for you. 

Did you have another test to see if your D levels came up? I would keep taking the supplements. They may need increased. My daughter and I both take more than triple the recommended amounts (per our doctors) in order to get our levels up in the normal range. So, it could still be D. I would follow up with the GP, see what the echo and stress test show. 

Keep pushing for answers! You deserve to feel better.

not feeling great

by new to pace.... - 2023-05-03 15:05:57

Sorry to hear you are just not feeling that great.  For me i have discovered when i have some of those  problems.  It is a couple of things.  First make sure you are staying hydrated, makeing sure you are drinking plenty of plain water.

The other  for me is some of the foods i eat. You might keep a food journal. Jotting down everything you eat each time then putting down your reaction(s).  Do it for a week.  Then if you react to that food do not eat again fro 6 weeks. Then put it back in every 4 days until you react again.  If that happens you will have to stop eating for 3 months.  Then back in every 4 days until you react.  At that point i would say just elminate for a year. Or get tested to see if you have an allergy to that food group.

new to pace

Sorry you're not feeling well

by Gotrhythm - 2023-05-03 16:39:23

Has anyone questioned whether you have asthma or something having to do with lung function? Lung issues will cause you to feel tired all the time and short of breath.

It's almost funny. Before I was diagnosed with bradycardia, I was sent to a pulmonologist by my cardiologist because he could find nothing wrong with my heart but I was complaining of exhaustion and SOB.

I went to the pulmonologist only because I was desparate for anwers. I didn't think I had asthma. I don't have severe allergies. I didn't wheeze and didn't think I coughed anymore than everyone does.

The pulmonolgist just happened to be listening to my lungs, when suddenly he heard a long heart pause. He ordered a Holter monitor test--which showed bradycardia at night and resulted in a pacemaker. After I had the pacemaker, I completed the pulmonology tests and asthma was confirmed, much to my surprise.

Happily my asthma is not severe. Asthma meds help a lot. Now I really don't cough more than normal.

Hope you get some answers soon.

good thought, Gotrhythm

by Tracey_E - 2023-05-03 16:49:21

I had similar symptoms after a very mild case of covid. Everyone assumed it was cardiac. I passed all the cardiac tests, pulmonary function found asthma. I've never struggled to breath or wheezed, the classic asthma symptoms. For me, it's a very mild cough and chest/upper back pain, when working out it's like hitting a wall. I didn't realize how much I coughed that tiny cough until I got on controller meds and it stopped.

Cough

by AgentX86 - 2023-05-03 17:00:55

One of the symptoms of heart disease is a persistent dry cough. After my first stress test I couldn't stop.  The next minute I was talking with the cardiologist on call, making an appointment for a cardiac cath.

No cough

by PacerPrice - 2023-05-03 18:24:21

Thank you all for your comments,

I have no cough at all so i'm not sure if it would be asthma. the shortness of breath is more that i'm aware i need too take breaths in, and run out of breath easily or quicker than usual. 

I'm just really not sure what is going on,

Thank you 

Nice to hear from you Hayden

by Gemita - 2023-05-03 19:34:56

Hello Hayden, may I give my opinion?  I still believe you are suffering from a stress related illness, particularly from the loss of your dear Mum.  Also your symptoms sound to me as though there is a lot of anxiety present and this is manifesting itself by changes in your breathing patterns.  I believe you might have started over breathing or something this and this is perhaps affecting your blood gases.  It is a real problem for some of us and we have to re-learn how to breathe again.  Your comment “I find myself randomly taking deep breaths, and sometimes find myself noticing when i breath in during conversations”, is quite revealing. 

Stress hormones cause the body to change its breathing patterns from slow, deeper breaths to either rapid, deeper breaths (hyperventilation) or to rapid, shallow breaths (Tachypnea). When your breathing changes to either of these patterns, carbon dioxide (CO2) levels in the blood change.  Acid/alkaline balance is affected.

My husband has recently been hospitalised for serious infection.  However they noticed that he was over breathing on admission to hospital, although he was tachycardic at the time too.  When they checked his blood gases they were very high.  They also reported that his phosphate level was very low (caused by hyperventilation and infection (sepsis)).  One of his symptoms prior to admission was that he complained of a sudden complete loss of strength and of muscle weakness.  Doctors had to give him an infusion of phosphate for 24 hours+ after which he was able to stand again.

The fact that your GP and cardiologist are not concerned is a reassuring sign that there is nothing serious happening but clearly you still need answers for your continuing symptoms.  A deficiency of folate and Vit D may take time to be fully corrected.  Additionally, if you are over breathing, you will need help to correct this.

I think you need to go back to your doctors and perhaps explain to them that although you are reassured that nothing serious is going on, you are still having difficulties.  You could ask them if it would be helpful to have a blood gas analysis test to check for hyperventilation syndrome or to look for other abnormalities causing your symptoms?  Keep up the pressure dear Hayden because what you are feeling is clearly not normal for you.

Chronic fatigue!

by Rch - 2023-05-03 22:08:33

Hi

I am assuming that you have had a negative basic work up including labs, X-rays, echo etc. except for some incidental lower D and Folate! And you are scheduled for a stress test this month as well. My question to you is, do you have any swelling in the small joints like the wrists or knuckles? Any sleep deprivation, apnea, weight loss or low grade fever? If the answer is 'yes' to any of these, please bring it up to your GP. I'm also a bit concerned with your blurred vision but if it's just due to tiredness, I wouldn't worry so much. Otherwise, you will have to mention that to your GP. The stress test will answer a lot of questions related to your heart. Hope you will have an answer soon. I wish you well!

So sorry you don’t feel well

by Aberdeen - 2023-05-03 22:28:19

Haydn,

Have your leads been checked? From October 21- April 22 I had spells of breathlessness on exertion and felt unwell on occasions. Ihad an echocardiogram and I have moderate mitral valve regurgitation but it was unchanged from the previous year. In April 22 the pacemaker clinic got in touch with me and said 2 of my 3 leads were failing.

A week later they were replaced. I have a monitor beside my bed but it took 6 months for it to be discovered???

Since my leads were replaced I feel great! 🤞🤞
Could this be a possibility? I hope you get some answers soon.

Good luck!

Don't forget the beta blocker

by LondonAndy - 2023-05-04 03:06:57

Hi Hayden, and firstly I have been catching up on some of your posts - you have been through a lot recently, including bereavment of course. My thoughts are with you.

I can't help but think the beta blocker you are on is responsible for a lot of your lethargy, and possibly the shortness of breath. I had trouble with the beta blocker they put me on at first, Metoprolol, particularly with my legs. I saw that you are due to see someone about it in July - is there anything you can do to maak that sooner? After trying several others, I ended up on Nebivolol, which suited me much better. I know that different betas work in slightly different ways, so I don't know what your options might be, but worth pursuing this.

I Get Your Frustration

by SeenBetterDays - 2023-05-04 08:29:55

Hi Hayden, I'm really sorry that your fatigue symptoms are continuing and having such a detrimental impact on your ability to live a normal life.  I have chronic fatigue and know how frustrating it can be when you are told by medical professionals that all is well when quite clearly it isn't. You have been through such a lot and I really believe that emotional trauma has a big impact on us physically. There is an incredibly strong mind body connection and painful experiences can have tangible physical effects on the body causing many of our systems to become unbalanced and dysregulated.  The pain in your legs could mean that your muscles are not getting a sufficient supply of oxygen so absolutely investigate further any heart or lung issues which may be contributing. This will at least give you reassurance that this is not the source of your fatigue and hopefully help to reduce your anxiety levels. On a practical level, I would go back to basics. Are you getting proper nutrition, good quality consistent sleep, hydration, sunlight exposure and do you have a good support network of people who you can talk to and are positive to be around? Also, are you able to find some activity which calms your nervous system such as meditation and/or breathing exercises which will get you out of fight and flight mode and into a more calm and relaxed frame of mind.  The body has an innate ability to heal itself but needs the right conditions to do that. I know that all these things are not always easy to achieve but sometimes focussing on simple fundamental changes can lead to gradual improvement. I'm thinking of you and really hope that you are able to get some clear answers from your tests and you see positive change soon.

Hugs to you

by Lavender - 2023-05-04 10:53:49

I'm wondering too if you're developing a way of breathing closer to hyperventilating. Could you try and focus on your breathing and pace it more to retrain your brain?

4-7-8 is one method-read this from online:

The 4-7-8 breathing technique involves breathing in for 4 seconds through the nose-holding the breath for 7 seconds, and exhaling for 8 seconds through the mouth with lips pursed as if pushing air through a straw. People may find it helps manage anxiety. This breathing pattern aims to reduce anxiety or help people get to sleep.
 

You don't do this all the time, just maybe 4 breaths like this every once in a while. Again, from online:

A person may feel lightheaded after doing this for the first few times. Therefore, it is advisable to try this technique when sitting or lying down to prevent dizziness or falls.

The total number of seconds that the pattern lasts is less important than keeping the ratio. A person who cannot hold their breath for long enough may try a shorter pattern instead, such as:

breathing in through the nose for 2 seconds

holding the breath for a count of 3.5 seconds

exhaling through the mouth for 4 seconds

As long as a person maintains the correct ratio, they may notice benefits after several days or weeks of doing 4-7-8 breathing consistently one to two times a day.

Keep seeking answers for your issues. Keep going to school. Time is a great healer. But, if this interferes with your quality of life-please seek help from a counselor. Some churches have free counseling. 
 

May God guide you to the proper solutions for you. 

Tests

by The Rose - 2023-05-05 17:42:42

Hi Hayden,

So sorry you're not feeling well.  It's so frustrating when told you're fine and you're not.  

Might I suggest different blood tests: TAT, Iron deficiency, Thyroid (T4/T3, etc.).  D-Dimer (blood clotting).  The tests might provide a different perspective.  

 Do you have a good homeopathic doctor?  (D.O. or Naturalpath).   They might be able to provide additional information.

Sadly, just learned that insurance only permits 15 minutes with drs.  That's why we're all suffering.  They don't take the full time to look at anything except a 2 minute cell phone text message type review.  At least, that's my experience.

Sending you prayers. I know you'll find the right answer very soon.

Blessings!

Folate deficiency

by Penguin - 2023-05-07 06:54:34

Hi Hayden, 

We're all making suggestions here but we can only guess. The only diagnosed condition that you have to go on is the folate deficiency (anaemia) and the symptoms described for this condition do seem to marry up with what you are saying.  

This link to an NHS site explains a little more about folate deficiency and may be worth reading if you haven't done so already. 

https://www.nhsinform.scot/illnesses-and-conditions/nutritional/vitamin-b12-or-folate-deficiency-anaemia. 

The treatment section might be helpful as it explains that 4 months of treatment is standard.  Treatment (in my experience) often works on averages and how the average patient will respond. That doesn't mean that you will respond to standard treatment and therefore your GP needs you to feedback that the standard approach hasn't resolved your symptoms.  

Take a look at the 'causes' section too and see if there is anything (diet / meds / other conditions) that apply to you or which you would like to discuss further with your GP.  

See what the blood tests say and if your levels have improved to normal but you still have symptoms ask about this. 

I'd definitely return to the GP rather than exploring alternative causes at this stage. It may confuse matters in your mind. My (non medical) advice would be to work with what has been diagnosed and report back! 

Good luck