Not directly hypothyroidism related

[DandyThyro]

I could bang on and on about this but will try to stay on point. Background: Like many of us, I have numerous conditions alongside hypothyroidism. One is obesity, which would be even worse if I didn't diet. Another is fatigue. Another is atrial fibrillation. Another is asthma, which was first diagnosed when I was four months old (I'm now 65). I control asthma through strict avoidance of dairy products, for decades, but it has got worse in the last 4-5 years.

A cardiologist recently ordered lung function tests to check out my fatigue. In July, the person who conducted them said my lungs were perfectly normal but for the one test result she would expect to see in anyone with asthma. I got the official results - having been run by that cardiologist - yesterday, and they say I don't have asthma, but mild lung damage caused by smoking.

I haven't smoked in over 27 years.

This same cardiologist had already told me to go away and lose weight, and that I'm significantly shortening my life through my lifestyle choices. I am sure I don't need to tell most of you how frustrating that felt.

So I'd already felt unheard regarding any attempt to join the dots between my thyroid condition and these other problems, and now I've been told my lifelong asthma doesn't exist.

This has implications regarding medication. My GP once took me off Bisoprolol, which is terrible for asthmatics, and had caused me a series of life-threatening episodes of breathlessness until I stopped taking it. The cardiologist put me back on it, and refuted my questioning that decision several times.

I also had a run-in with him about another drug, Amiodarone, which made me feel terrible and caused a 20lb weight gain in 2 months. It 's a known thyroid disruptor.

I'm starting to think now that the cardiologist might have an attitude, or else was just determined that the drugs he prescribed couldn't possibly be wrong.

A lifelong diagnosis of asthma, gone. How best to challenge this? That cardiologist has left the hospital. Do I ask for a second opinion?

Thanks for your attention. I really needed to vent.

[SlowDragon Administrator]

Looking at previous posts you are under medicated….on too small a dose levothyroxine

Have you had dose increase in levothyroxine

Being under medicated often causes breathlessness

[DandyThyro in reply to SlowDragon]

Thanks SlowDragon. I've replied to your other message: no. My GP and endo have refused to increase my levothyroxine. I've had three TSH tests in the recent couple of months and it always comes in under 2, which they think is excellent (... I know). Your note about breathlessness spurs me on to consider increasing liothyronine again, as at least I can get that myself. My doctors - and I - are afraid to increase thyroid meds because of my atrial fibrillation. Again, I know AF can also be due to underactive thyroid, but no doctor I've met agrees with that, and so I get scared of increasing my thyroid meds. My AF has had serious impacts in the past.

[SlowDragon Administrator in reply to DandyThyro]

Personally I definitely wouldn’t increase T3

[FancyPants54 in reply to SlowDragon]

I'm afraid I would. And I do. But first DandyThyro needs to run a private Medichecks or Monitor my Health thyroid blood test to check TSH, FT3 and FT4. It's vital to know how well the patient is converting. There are papers out there that show low FT3 levels are worse for AF than higher levels. Only consistent over range FT3 should be a concern. Cardiologists are well know for trying to terrify us AF + hypo patients about T3. They don't understand it at all. EPs are supposed to understand it but I've never seen one of those. I have to do my best myself, with a private Endo. to help answer questions and prescribe the T3.

[DandyThyro in reply to FancyPants54]

Thsnks. I've been searching today for a private endo but with no success yet. I'll do another Medichecks soon to get a new baseline on FT4 & FT3 before I start adjusting my doses.

[FancyPants54 in reply to DandyThyro]

Yes, you need to do that. I will PM you my Endo details.

[Hidden in reply to FancyPants54]

I have noticed that cardiologists like to tell us that hyperthyroidism causes heart disease, but they don´t say that hypothyroidism does the same...! Also, they call us "hyperthyroid" as soon as our TSH gets lower than they´d like.They know absolutely nothing about thyroid disease. To them, taking levo and having a TSH in range is enough, and remaining symptoms have nothing to do with the thyroid. I have even heard about cardiologists referring to T3 as a "bodybuilder drug"...they don´t even seem to know that a healthy thyroid produces T3, nor that T4 is supposed to convert to T3. The ignorance of doctors never ceases to amaze me.

[FancyPants54 in reply to Hidden]

I agree with all you said. I was shocked when the cardiologist told me I'd caused my AF because I was taking 12.5mcg of T3 a day with my levo. I'd had AF on and off for years and seen him right at the start when I was not even hypo. But that's the wisdom he came out with when I went to see him because my AF had gone full time.

[thyr01d in reply to FancyPants54]

What is an EP?

[FancyPants54 in reply to thyr01d]

Oh now you are going to make me try to spell it and I'm sure I'll get it wrong. Some people on here get sent to EP's, I've only ever seen a cardiologist but am thinking of seeing an EP privately for a second opinion.

I googled it to get the spelling correct! Electrophysiologist. They specialise in arrhythmia, which are usually caused by electrical signalling issues. Cardiologists are described as plumbers, dealing with the pipes etc. Electrophysiologists are the electricians.

[helvella in reply to FancyPants54]

I have now added that to the abbreviations and acronyms section of my vade mecum for thyroid!

healthunlocked.com/thyroidu...

Will be available next time I copy the update across.

[FancyPants54 in reply to helvella]

I've heard others on here describe the 2 professions thus. It's good, because it's clear and it's accurate. It helped me enormously to understand the limitations of the cardiologist I was seeing. EPs understand thyroid implications and T3 medication far, far better than cardiologists. In fact cardiologists don't understand it at all and try to put the fear of god into anyone they see taking it. My last appointment (phone - what use is a cardiology appointment by phone!?) the cardiologist actually started asking me a lot more about T3 and it's use and why I felt it was not a risk and all sorts of things like that. I was surprised. I thought perhaps he'd do some research. However, I think I was the research and he's now left the NHS and gone private!!

[thyr01d in reply to helvella]

Now you are playing with us .... vade mecum???

[helvella in reply to thyr01d]

The document itself explains!

[thyr01d in reply to FancyPants54]

Thanks FancyPants.

[DandyThyro]

Thank you. I think you're right. I'll ask for a modest increase in Levothyroxine and get tested again in 6 weeks, probably privately. It'd certainly be interesting to see its impact on my AF and breathlessness.

[greygoose]

Low iron can cause breathlessness, have you had that checked? My breathlessness has greatly improved since I raised my iron levels. Also, I've recently started taking black elderberry, and I'm sure that's helped, too.

How was your asthma tested that they now say you don't have it? I was diagnosed with asthma in my 30s, but I'd suspected it for a long time. However, with me, it comes and goes. And some doctors say that's impossible. Seems to me, doctors are unsure about asthma, and cannot agree on who has it and who doesn't! It's all very confusing.

[DandyThyro in reply to greygoose]

I had numerous lung function tests this time: booths and tubes and things to blow in but I don't know their names. I was initially diagnosed at four months old, and spent years as an outpatient at an asthma clinic. Mine became milder (ironically, especially when I was smoking) but was always induced by exercise and some weather changes. Every doctor I've ever met has remarked on my obvious asthma symptoms. The person running the lung function tests said they indicated asthma. This cardiologist is the first to say it's not asthma. I'll get my iron checked, thanks.

[greygoose in reply to DandyThyro]

Well, then, it sounds like the cardiologist is wrong. Did he give you any idea what the problem was, if it's not asthma?

[DandyThyro in reply to greygoose]

Yes. He says it's smoking related. I haven't smoked in 27 years 🤔

[greygoose in reply to DandyThyro]

Well, I would ignore him, if I were you. Just because he's a specialist in cardiology doesn't mean he's an expert in everything. It's amazing how wrong doctors can be, at times.

[DandyThyro in reply to greygoose]

I'm spitting feathers, to be honest, really upset. In principle, I can and will ignore him, but this now goes on my official health records and has a big influence regarding drugs I'm prescribed. The cardiologist insisted I stayed on bisoprolol despite me and my GP wanting me off it because it's awful for asthmatics. So now he's diagnosed me as not asthmatic, we can't argue. I'm asking my GP to request a second opinion on those results, or further tests, as this diagnosis is so out of kilter with every previous one.

[greygoose in reply to DandyThyro]

You are right to request a second opinion. But, just because a doctor prescribes something, there's no law that says you have to take it.

[DandyThyro in reply to greygoose]

True! I need something to control my heart rate, however, as it can gallop so out of control I end up on a gurney. Bisoprolol is the standard med for that but the GP is prepared to try something else. I will definitely pursue increasing my levothyroxine, knowing that the AF and asthma may get more controlled that way. That would certainly be simpler and more joined-up,

[greygoose in reply to DandyThyro]

That does sound like a very good idea.

[FancyPants54 in reply to DandyThyro]

I just asked my GP to change my beta blocker as I didn't like Bisoprolol. I'm on Nebivolol. You could try a calcium channel blocker instead of a beta blocker. Go talk to the GP.

And don't be afraid of the T3.

[DandyThyro in reply to FancyPants54]

Thanks! I will definitely discuss the alternatives. My GP doesn't do anything without the cardiologist's permission, so it might take time to make the swap. Meanwhile I'll do more about the hypothyroidism underlying these other complaints: with luck, I might reduce the need for some of the other meds completely.

[FancyPants54 in reply to DandyThyro]

Getting T3 dosing right is hard and slow. I'm not there yet. BUT when I started taking it, even a low dose dropped my HR and made my heart feel calmer. I was happy to experience that. It showed I was on the right track.

[Mamapea1 in reply to greygoose]

I too have started taking black elderberry, since reading an excellent report on here. I have high hopes of it helping me through the dreaded winter☃ so far, so good...but it hasn't started yet! I'm already praying for spring!🌷

[greygoose in reply to Mamapea1]

I know what you mean. Mornings I get up and open the door to let the dog out, and I just want to go back to bed and hibernate. That blast of cold air that hits you! Brrrrrrrrrr I hate winter.

[tattybogle in reply to greygoose]

Brrrrrrrrrr I hate winter.

that's cos you is doin it wrong

Geeses is not supposed to hibernate ..

Geeses is supposed to move to Southern Italy, or Tunisia, for the winter.

[greygoose in reply to tattybogle]

I wish! lol

[DandyThyro]

Thanks, no, I stopped it months ago. Had to write letters to hospital and GP to get that approved, however.

[radd]

DandyThyro,

All these symptoms could be related to inadequate thyroid hormone replacement meds, and your previously TFT's show FT4 only 16% & FT3 only 30% through range.

Several years before I was diagnosed hypothyroid I developed a dry raspy cough which progressively became worse, making my voice sound husky. I was prescribed inhalers & even sent for chest X-rays which showed nothing. After medicating Levothyroxine everything improved almost immediately & totally cleared once I was optimally medicated.

There is research showing inadequate thyroid hormone can impair lung function, weaken respiratory muscles including the diaphragm, and even impair the brain centers that regulate breathing. Symptoms may masquerade as asthma or unbalance controlled asthma bringing about new symptoms. Both hypoxia and carbon dioxide retention also decrease the levels of FT3 making it a vicious circle.

When Levothyroxine made my heart jump about I was sent off for a heart scan, ECG & 24 hour monitor. My heart issues resolved when I added T3 to my Levo. Again there is research showing the importance of adequate FT3 in cardiac function.

[DandyThyro in reply to radd]

Thank you raad. That's incredibly interesting and useful information. I think I need help from an endocrinologist who also knows about the heart. The symptoms you describe are very similar to mine. I have failed thus far to persuade doctors of the connection between my thyroid (they don't even accept it's low-functioning) and my heart condition. It spurs me on to seek better help now I know it causes asthma (or something like it) as well.

[Mamapea1 in reply to DandyThyro]

Just to say that I agree wholeheartedly with what others have said. I was diagnosed with so many awful conditions, AF and asthma, COPD, ME/CFS, sleep apnoea (despite being thin) and more...and I had all the inhalers and medications to match, which didn't help.

I was on a high dose of Levo, but my health deteriorated, until I found this forum, and I realised that in my case, I needed T3. I no longer need to take any meds, and I don't have the symptoms of any of the conditions. I only take vitamins and minerals and T3.

The last 5 years have seemed like a miracle, so it's possible that you could also reduce your meds significantly. I hope you find a knowledgeable Dr to help you. Good luck 🍀

[DandyThyro in reply to Mamapea1]

Wow, that's really encouraging!

[FancyPants54 in reply to radd]

The heart is one of the main organs for needing good supplies of T3. Like the brain, these organs never have a moment of time off.

[penny]

I have read of links between low vitamin D and asthma; have you done any research on this?

[DandyThyro in reply to penny]

No. I am low in it.

[penny]

Might be worth doing some research and getting vit D levels optimal.