I had the results of my chest and heart scan this week from the chest clinic. Was a bit frustrating in that the doctor couldn't find any cause of my feeling of suffocation and shortness of breath but then said that my left lower ventricle muscle is stiff but said nothing to worry about as it is expected for my age (!) But researching the term stiff heart muscle, I found restrictive cardiomyopathy, which I'm not familiar with but it does explain the symptoms I've been experiencing. The doctor just said to increase my cardio exercise to strengthen the heart. I'm not as active as I was as even reaching to get a mug out the cupboard makes the SOB worse. It's also at rest and constantly there. I do manage to walk some distances and have just gone back to cycling but some days I feel so winded by it all that I don't want to do too much.
The doctor did mention post viral fatigue causing general weakness and that the respiratory mechanism needs to be reset. They want to do a lung function test where they will test my output on a stationary bike. Dysfunctional breathing was mentioned and I completed a questionnaire that showed that as a possibility was only borderline. To be fair, I don't buy into this woolly diagnosis of "dysfunctional breathing" but am trying to keep an open mind. If it is proved that I have that, I will be referred to a physio. I already do yoga breathing and self hypnosis, so I really don't see how physio will help but I'm hoping to be proved wrong.
My main question after all this moaning is - has anyone been diagnosed with restrictive cardiomyopathy and then gone on to be treated for their under active thyroid and then for their heart symptoms to disappear?
Was funny in a way, when I researched all this, it mentioned heart failure and that stage 4 was shortness of breath and a suffocation feeling even at rest. Hmmm.....that rings a bell 😉 Maybe I need to stay off the internet!
Thanks for any advice and insight anyone can give. I'm on levo 75mcg and have posted a few times, with recent results. I continue to SI B12 on alternate days, take D3/K2/magnesium, Thorne B complex, iron bisglycinate (weekly), have a good diet and not too overweight.
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Highland49
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Yes I must get round to adding a profile, that would really help all of you. I've just had bloods taken again, so will post before I return to see endo on 26th.
I went gf some months ago and it's helped such a lot with the breathing. When this all started in March, I was struggling to get a full breath and just couldn't on most breaths. Then had to focus on something in the room until it all passed and when I could take a deep breath again. I was tested for coeliac earlier this year and it was negative but I understand there can be false negatives. Even if I have one normal sandwich, my breathing is struggling more so I'm now very strict. Dairy has the same reaction so at least I'm in control of some of it in that I can help it a bit with diet.
I follow Izabella Wentz and have one of her books.
I’d say stay on the Internet. I’ve had lots of heart symptoms but never had more than ecg. GP has suggested enlarged heart which I think is cardiomyopathy??? Once on the correct dose it resolved. But sometimes have atrial fibrillation.
Have you had a diagnosis of AF from a cardiologist?
I have supraventricular tachycardia diagnosed by 2 cardiac departments.One in 1998 on diagnosis,one in 2015 after an overnight admission for obs after going to A&E.
On thyroxine for 16 years,I had regular episodes(heart going double speed,resolved by lying flat,no pillows until it stopped,usually well under an hour after starting.)
On starting T3(5mcgs 3 times a day for 3 days)I had an episode that wouldn't stop.After 5 hours I went to A&E(worried it might be AF)it stopped after 9 hours.Had all the heart tests again plus some more at outpatients.Told I had a birth defect & could have ablation done.Read that up.Poor outcome leading to permanent need for a pacemaker in high percentage of patients who have had the proceedure.
But here's the thing.I went on to be able to take 55cgs of T3 in one dose.
I do not get episodes on T3 or NDT.
The cardiac departments I was seen at DO NOT RECOGNISE A CONNECTION BETWEEN HYPOTHYROIDISM & SUPRAVENTRICULAR TACHY.
I did not tell them I had started T3 because of the scaremongering that would ensue.
After AF was ruled out & a gap of a few weeks,I recommenced T3 & never looked back
I believe that the enlarged heart is involved with one of the types of cardiomyopathy. I like to be my own advocate and to understand what is causing the symptoms. Are you on thyroid medication or do you mean heart medication? That's good to know your heart symptoms have resolved, except for sometimes AF.
With breathing problems, you may benefit from a Sleep Study and subsequent supply of a CPAP machine.
I believe I'm correct in stating that thickened heart muscle can result from a sustained high heart rate (hyperthyroidism, long distance cycling) or a slow heart rate (hypothyroidism) with high blood pressure.
If you've been at risk of tick bites, Lyme carditis is a possibility.
I'm hoping once I have the lung output test/bike test that I'll have some more answers. My husband has noticed that I do have sleep apnea regularly but this is better since being on levo, along with the snoring he said I was having most nights. I'd be happy to have a sleep study done if it meant i wasn't so tired.
I do walk the dog in woodlands but fortunately, haven't noticed any tick bites.
Hi Highland49, I had heart issues before being diagnosed with hashimoto’s. My resting heart rate was dropping into the 40s and I was extremely breathless and coughing up blood. The cardiologist couldn’t find a cause for why my heart rate was dropping so low as all test were normal apart from low heart rate.
Within a few days of starting Levo my heart rate began increasing and the shortness of breath has mostly resolved, the coughing up blood has resolved completely.
At no point did my consultant or Doctor indicate that my thyroid could be causing the problem. It was only by chance they discovered I had a thyroid problem if they hadn’t it was looking like I’d need a pacemaker.
Google T3 and bradycardia, bradycardia causes shortness of breath or a feeling of not getting enough air. Do you know what your resting heart rate is?
So good that they indirectly got to the bottom of your symptoms. It seems that there is such a strong connnection so I don't understand why this is not considered at the beginning. There must be so many patients in this situation. Scary to think you could have had a pacemaker when all you needed was levo.
My resting heart rate has been 60-65 for many months. My temperature on waking doesn't get above 35.8 and was 35 this week so I know that the basic metabolic function is definitely not being improved by levo for me. It's helped the lethargy so my walking is better but I don't get out of first gear and struggle uphill. It helped the breathing a small amount initially but everything seems to have plateaued.
Thanks about the T3 and bradycardia, I'll look that up. There was a very interesting study mentioned online, children with asthma having their symptoms improved by T3 so hoping that my endo is happy to prescribe and then i just need to sort out the sourcing problem of T3.
60-65 is a low heart rate for someone whose not super fit. You’re also on a very low dose of Levo so it could be you’re under medicated and that’s why your symptoms are persisting. Did your Doctor test TSH,T4 and T3? Is your T3 at the top of the range?
Absolutely but unfortunately my endo dismissed this aspect at my first consultation, along with my low body temperature. But he did think my T3 was a little low, so wants RT3 checked this time along with TSH, T4 and T3. I'm just waiting on those results before I see him again on the 26th.
My results in June, after being on levo for 6 weeks, were -
T3 4.44 pmol/ L (3.10-6.80)
T4 21.1 pmol/L (12.00-22.20)
TSH 0.896 (0.27-4.20)
As SeasideSusie mentioned, my T3 is only at 36% through the range. The endo doesn't believe that a fair amount of people don't convert, he spoke like it's very unusual.
I had shortness of breath, palpitations, started using 2 pillows, zero energy, low mood and ended up having an X-ray which showed an enlarged heart. I saw a heart specialist who diagnosed heart failure. I was put on loads of medication. Then I had an MRI which didn’t show any reason for my problems. They only found that I had a slightly reduced left ventricular disjunction. After a year I was told by the cardiologist that he was dismissing me ( but with a 3 day return appointment if I needed it)
I was confused as I still felt so fatigued and Very ill
After several visits to the doctors, a different doctor sent for tests and it came back I had hashimotos. My “normal “ TSH of 4.5, sometimes 6 was then addressed and I was put on levothyroxine.
After 6 weeks I felt like my engine was on its way back. I’m still not right, trying to get the dose right. Still go low energy. My heart is still enlarged so probably that doesn’t help. But I think low thyroid was there when I was first diagnosed with heart trouble. Even suspect I went hyper just before. Nobody saw it. I am suspicious that it may have contributed.
So you were in a similar situation to me. i don't have a family history of heart problems, only high blood pressure, so I'm surprised by it all. Possibly you had thyroid problems for many years so possibly it will take some time for your symptoms to resolve. That's good though that they did check you out with an MRI. So it doesn't sound like a referral to a cardiologist would help me.
As you're still not right, do you know your vitamin and ferritin levels to help support your thyroid? I believe for me that if I wasn't self injecting B12 and taking vitamin D, folate and iron, that my fatigue would have been much worse.
I think you are probably right and I did have a problem for a long time as when they tested the TPO it was 1358 (<60) so that’s quite high! So antibodies were attacking my thyroid. I have hashimotos. The doctors were passing my thyroid tests off as ok when the TSH was 4.5, even 6. (0.03-5.0).
I’m a bit confused about the heart part. In December 17 an X-ray said “ normal heart” so I was over the moon. Then after getting every virus that was going and chest infections etc I recently had another X-ray that said my heart was enlarged. Doc said it may just be the position when the X-ray was taken. 🤔
Some of the links about heart / thyroid on this thread make very interesting reading.
The levels you mentioned are as follows...
Serum vitamin B 12 level 398 [220.0 -700.0]
Serum folate level 5.5 [2.6 - 17.3]
Serum ferritin level 120. [10.00 - 420]
They seem a bit low ? Would a multi vitamin help ?
Wow, your TPO antibodies were a lot higher than mine. Your doctors sound like mine. As I had family history and lots of symptoms, I knew it was a strong possibility that I had under active thyroid at least but got told by one GP not to waste my money on private blood tests as my TSH was in range. I'm relieved that I pursued it.
The doctor at the chest clinic did mention about viruses so it's feasible that these could affect the heart. Some websites back this up so hopefully your heart will settle in time. I know with Hashimoto's that one of the triggers is viruses, so it must cause long term inflammation to all of the body systems. Are you due any more checks to put your mind at rest?
With your blood results, I'd find it difficult to comment as I'm so used to the UK ranges and results. However, you folate is low and ferritin could be higher. Are you in the US? Do you have symptoms of low b12, such as neurological symptoms of numbness, pins and needles and/or balance problems? Taking a multivitamin is not likely to help as the actual amount contained of each vitamin and mineral will be too low and not necessarily in the best form that would aid absorption. With pernicious anaemia, you would be unlikely to absorb any b12 from a tablet.
I found that I was borderline for vitamin D so now take a softgel D3 with K2 and magnesium. It's been such a help for general aches and pains, as well as supporting my thyroid.
Thanks for the reply, no I’m not due for anymore checks but if I don’t feel better after this course of antibiotics I will go back and fight for further check ups. The cardiologist originally suggested it may have been a virus when my heart was enlarged before ( but I’m unsure now if it ever went back to normal )
I am in the U.K. but I’ve noticed there seems to be a lot of different result markers !
I haven’t noticed any of those symptoms. But I agree they seem low results. I’ve started a new post for advice as there are lots experts on here about which supplements are best.
It does get confusing with different ranges. Yes they are very good on here. I know with b12, the optimum is 1000+ as you have an autoimmune disease. Folate should be 17+ and ferritin at least 80.
Probably best to read my profile first. Just wanted to say once on T3 only medication everything is improving. Will have to wait for another echocardiogram to know if my left ventricle and ejection fraction has improved but it sure feels like it. Much more energy. One thing I noticed is that my breathing improved once I stopped T4. I used to have a kind of air hunger all the time. Now my lungs seem to fill with more air. When my pulse was over 100 beats per minute on T4 I had to sleep on 3 pillows and was breathless climbing the stairs. On T3 it's not an issue. Hope this helps.
Your profile was an interesting read from my point of view but absolutely appalling that you have lost so many years over this. So good that you're finally on the right medication and improving so much.
I used to be so active so I'm really feeling the loss. I was lucky that I didn't have any problems having a child but have definitely gradually gone downhill since I had my son. This all has coincided with other high stress events so money worries have really not helped.
I hope you continue to improve. It will be interesting if they compare the before and after of your echo. All the best.
Like you I have DIO2 gene......could barely manage to walk around supermarket in 2016. Just 6 days after T3 added....Walked 20 minutes to the supermarket and back, as well as around it!
Also took me 25 years terribly unwell just on Levothyroxine. More on my profile
Looking at your profile I can see you still take some T4. If we cannot convert properly with DI02 gene it begs the question do we really need T4? I've tried to research this. My Cardiologist told me to stop T4 immediately, then take 15 mg T3 am then 10mg T3 at bedtime. It's been 6 weeks and I have tweaked it a bit. Take 20 mg am then 5mg around 2.30 pm. Seems better energy wise. I don't want to self medicate, although I know some people have no choice. I am going to ask for a higher dose dependent on my T3 RT3 blood test results. Let's just say I think I would need 20mg am and 20 mg pm because I kind of run out of steam later on in the day. But it could just be after years of problems like you, the body takes time to heal. I am going gluten free. Have not been tested but found I don't tolerate pasta or white bread.
It's such a waste of a life isn't it. My partner says don't look back just grab life by the b**ls and enjoy what little time you have left. I'm trying. At least I can feel joy for the first time in 29 years. Anxiety gone. I do hope Endocrinologist won't make me take some T4 again when I go back in October. For me if a medication doesn't work you shouldn't take it ever again. Over the years I have felt myself slowly slipping away, fading. My own family thought I was dying, huge black rings under my eyes, pale as a corpse. Updated my Will etc. It's like being punished for a crime you never committed. I watched 4 people diagnosed with hypothyroidism get well in a matter of weeks. They are the lucky ones I guess. There are too many of us that don't. I would rather have no diagnosis than the wrong one. At least we have this forum for support. It's been so helpful for me on my journey. Thank you.
If you are only taking T3 you won't need RT3 testing. It's only T4 that can convert into RT3
Personally I found I need the same level of T4 as before adding T3. Possibly now even ready for dose increase.
Became unwell a few months later with low FT4 after Levo was reduced from 125mcg down to 100mcg when started T3. Increasing Levothyroxine dose back to 125mcg and symptoms improved
SeasideSusie also finds she needs good levels of FT4 as well as FT3
This is very interesting, shows T3 improves heart function in Cardiomyopathy. The DI02 gene test might be worth paying for if you are not converting, evidence to get an NHS prescription. I do think you need a good Cardiologist. I saw an article but can't seem to find it now, but basically they x-rayed a man with an enlarged heart who was also Hypothyroid. They x-rayed him 6 months later after thyroid hormone replacement. Picture showed the heart had completely remodeled itself. I will try and find it again.
I had similar problems when I was on Levo plus many, many more...after years of trying to convince 'They who know better' that this was side effects to Levo I was eventually given Armour, I was so well on that until they reformulated it...and became very ill again, so I was allow to try WP...well on that too but then it went out of production now I am trying Thyrovanz which I have to buy....OK up to now but blood tests pending...watch this space!
It's crazy that the different brands differ so much. There was a definite improvement once I was on levo and will be interesting if I do have to reduce or increase levo and then get given other brands.
Keep us posted 😊
Yes it is...the chemical drugs have the most side effects, seems the NDT brands are better but it's the fillers used that cause side effects...I will keep you posted!
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now I am trying Thyrovanz which I have to buy....OK up to now but blood tests pending...watch this space!
Advice on supplements- anyone recognize these symptoms?
Trazadone
