Hope some of you might remember me.

[Butterfly65]

Hello all,

After a long absence from using health unlocked,

basically because although I haven't felt well for many years, I was never diagnosed with a thyroid problem or any other disease so I had no choice but to live with my symptoms the best I could, often changing diets, restricting certain food groups such as dairy & gluten & taking supplements.

This group was my go to for a long time, it helped to keep me sane at a time when I felt I was getting no help elsewehere.

However,

I've recently been diagnosed with heart failure & Atrial Fibrillation, AF is a fast erratic heartbeat, I also have Low blood pressure & have gone from taking no meds whatsoever to having to take 7 daily.

I'm 59 now but I first started posting here around 2014.

I've had an echocardiogram whilst in hospital which revealed damage to two heart valves, (one severe) & damage to both left & right ventricles.

I'm currently awaiting results from an MRI scan I had at Papworth two weeks ago.

The reason I assumed that I had thyroid problems was because my symptoms were more or less identical to that of my daughters who was diagnosed hypo at 14 years of age, plus I had an aunt who developed it later in life, during menopause.

Extreme fatigue,

swelling in legs, ankles, stomach & hands,

cold & heat intolerance,

weight gain despite not changing diet, extremely dry hair that falls out alot, plus a few more very similar symptoms.

Each time I visited my GP over the course of roughly 12 years, at no time was my heart ever mentioned or checked, despite my symptoms.

I have not had an appointment or a full report from cardiologist since leaving hospital 8 weeks ago but have a long list of questions.

If I hadn't taken myself into A & E on the 30th of August with symptoms of severe breathlessness, severe oedema, bloated stomach & fatigue,

I'm really not sure what would have happened.

Whilst in hospital I was given diuretics intravenously plus other meds to thin blood & to regulate heart rate, blood pressure has been consistently low.

I lost a stone & a half in water weight in 11 days.

I'm not posting this to frighten anyone but I know there must be people like me who are frustrated & suffering because they have so many thyroid symptoms but every blood tests comes back within normal range.

If I knew what I know now, I'm pretty certain I'd have been requesting heart health checks & HF blood test as well as other blood tests. 💜 Ask you Gp about heart health checks.

[greygoose]

Your blood test results from 8 years ago -

healthunlocked.com/thyroidu...

very clearly said you were Hashi's/hypo, despite the low TSH. Had you had a knowledgeable doctor at the time, they would have started you on thyroid hormone replacement based on those results. The fact that they didn't has probably resulted in your heart problems - you probably didn't have any heart problems at that point, so asking for blood tests for the heart wouldn't have helped you. Hearts need a lot of T3, and yours has probably been starved of it for many, many years.

[Butterfly65 in reply to greygoose]

Hello Greygooose, Thankyou I appreciate your comment as I've always done.

To be honest with you I've been on an emotional rollercoaster since I was told of my heart problems so I'm probably not thinking straight & still feel very unwell but I knew I had to post here in this forum.

Whilst in hospital I saw several cardiologist & told them that I'd believed I had an underactive thyroid or hashimoto's & informed them of my daughter & Aunts diagnosis but they never informed me if they had, or were going to test me or not.

Two weeks Prior to me being admitted I'd asked my GP for blood tests & a heart monitor because I was having severe palpitations.

It was her who suggested checking my thyroid again,

my body was full of water & I was becoming breathless.

I had my bloods done & she told me to make a phone appointment for two weeks so we could discuss results, but by the time the appointment came around I was in hospital, receiving messages from the GP practise informing me that my doc was off sick so phone appointment regarding blood results would be rescheduled.

I still haven't had results or spoken to my GP so will have to make another appointment, probably, probably have to wait for 3 weeks & then wait in the waiting room for 45 minutes before being seen.

Prior to my last appointment I'd given up on them so hadn't been to see my Gp for a few years.

I was struggling but managing somehow.

You've put another perspective on this that I know I mustn't ignore.

[greygoose in reply to Butterfly65]

They probably did test thyroid in the hospital but only the TSH. And that by itself is not a lot of use. It doesn't tell the whole story. Same with your GP, so don't be surprised if, when you finally get to see her, she tells you there's no problem. It would be best, if you can, to get private tests again and wave the results under her nose!

[Butterfly65 in reply to greygoose]

Thankyou for taking the time to reply, I feel completely lost & alone at the moment. Unable to think straight & very tired.

[greygoose in reply to Butterfly65]

Not surprising you're tired. You've been through a lot. So, concentrate on one thing at a time. There's not a lot you can do at the moment while waiting to see your GP - unless you want to see a private endo. But, in either case, it would be advisable to do private labs first.

[Butterfly65 in reply to greygoose]

Will do, my husband is reading these comments with me & I've asked my daughter to sign up to health unlocked so that she can follow my comments to help me & hopefully also to learn more.

[greygoose in reply to Butterfly65]

Good idea!

[Butterfly65 in reply to greygoose]

I phoned my surgery earlier today. I haven't been In touch with them since an appointment I made with GP back in August.

I made the appointment because I was suffering with right groin pain that I've had on & off for years, plus severe oedema, a rapid heartbeat & palpitations.

I have no idea what bloods I had done but I do know she said she'd do thyroid again because I hadn't had them done for a few years.

Today I asked the receptionist what the results were from last blood tests, she said all came back fine despite me being in hospital with heart failure two weeks after having them!!

I haven't taken any supplements since I was admitted on the 30th of August because one of the cardioligsts advised me to wait until they knew more & did more tests.

I've got a telephone appointment with surgery pharmacist later today to ask if it's ok to take my supplements with my heart condition & the meds I'm on.

I feel very tired, more tired than I did when I first came out of hospital.

HF nurse I spoke to yesterday said that she'd request an iron panel test for next blood tests that I'll have in a couple of weeks.

[greygoose in reply to Butterfly65]

Fine? You really don't want their opinions on your blood test results, you want the numbers: results and ranges. Their idea of 'fine' is often not fine at all. It is your legal right to have a print-out of all your results.

For a GP, doing thyroid tests usually means just TSH - at best TSH plus FT4 - and that really doesn't tell you much at all. The most important number is the FT3. But good if you're getting an iron panel. Iron is very important for hearts. And if your iron/ferritin is low, it's going to make you incredibly tired!

[arTistapple]

Remarkably similar to me but I experienced prinzmetal angina (coronary spasm). Had to fight for months for a referral to cardiology but told nothing was wrong. I asked outright was I going to have a heart attack. “I can assure you, you are not going to have a heart attack!” Red faces all round when three months later I had a heart attack.

Only once I was diagnosed with hypothyroidism (twenty years later) did I ask for my medical history and there was a ‘dodgy’ thyroid result. Who was checking those? Again crap guidelines created by ‘endocrinologists’. Heck they can’t work out their own blood test results but it’s left to cardiology who still to this day, know nothing about the hypothyroid/heart connection.

Even if you had got cardiology on board the statistics say that women with heart issues are not ‘believed’. We are very poorly treated in that department too.

As we learn on the Forum , there is no-one looking out for us but us.

You (like the rest of us) did the best for yourself with the help you sought. It’s not your fault we have such dreadful medics who can’t join any dots whatsoever.

[SlowDragon Administrator]

Sorry to hear of your recent diagnosis

You know have high thyroid antibodies

Psoriasis is also autoimmune

Suggest you retest both TPO and TG thyroid antibodies tested

plus full Thyroid evaluation you need TSH, FT4 and FT3 tested

Extremely important to test vitamin D, folate, ferritin and B12 at least once year minimum

you say in your profile you are on plant based diet

What vitamin supplements are you taking

Low B12 and ferritin virtually guaranteed on plant based diet unless testing and taking supplements

Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease

Low vitamin levels more common as we get older too

Low ferritin can cause high heart rate ….as can low Ft3

For good conversion of Ft4 (levothyroxine) to Ft3 (active hormone) we must maintain GOOD vitamin levels

Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins

Post all about what time of day to test

healthunlocked.com/thyroidu...

Testing options and includes money off codes for private testing

thyroiduk.org/testing/

Medichecks Thyroid plus BOTH TPO and TG antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes BOTH TPO and TG antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee

Only do private testing early Monday or Tuesday morning.

Tips on how to do DIY finger prick test

support.medichecks.com/hc/e...

[Butterfly65 in reply to SlowDragon]

Thank you for taking the time to reply & providing me with these helpful links slow dragon. Regarding plant based diet in bio, I probably tried that for a few months a few years ago when bio was initially typed out.

My diet has been varied with meat, fish & lots of fresh veg.

Two years ago I did clean sensible keto, didn't overdo it with fats & had good results.

Before being admitted to hospital I was supplementing with clean aceola cherry vit C - Icelandic cod liver oil from bottle - vit D with K2 - clean magnesium glycenate- zinc -Vitamin b12 sublingual - vitamin b complex & maybe a couple more but I can't remember right now.

Oh & selenium or a couple of brazil nuts.

[Butterfly65]

Thank you for taking the time to reply arTistapple.

My biggest fear now is that I'm being treated with a cocktail of drugs to keep my heart functioning but I have no idea how they will affect my thyroid.

Also believe open heart surgery might be required to repair of replace my damaged valves & ventricles, knowing that there's a good chance I have an untreated thyroid condition that has caused it that no one from the NHS will confirm & treat is terrifying.

I spoke with a heart failure nurse today.

I asked her what the odds were of the cardiologists knowing what had caused my heart damage or for how long I'd had it, she said unless it was genetic they normally wouldn't know.

[bantam12 in reply to Butterfly65]

Both my husband and I were well treated for hypo yet we both still got heart problems, he had surgery at Papworth for bypass and to replace 2 valves plus he had Afib and a pacemaker, I have Afib, heart block and a pacemaker, so despite being stable on thyroid meds for many years we still ended up with heart problems and nobody knows why. Women are not generally treated well in Cardiology, my husband and I saw the same Cardiologist yet he was treated very differently to me ! all we can do is be persistent until someone listens.

[Butterfly65]

Hello Bantam, sorry to hear you & your husband have suffered with heart problems too & thanks for taking the time to reply. I really don't get it, why do cardiologist treat women differently to men?

One of them did get annoyed with me when I was in A & E because I didn't give him a straight answer regarding when my symptoms started.

I was hooked up to monitors with intravenous drips in both arms struggling to breath whilst trying to explain that I hadn't felt well for years but all he wanted to know was when the breathlessness started. My husband ended up answering him.

[bantam12 in reply to Butterfly65]

Women are not treated well throughout medicine but some specialities are worse than others. It’s well documented that women have different cardiac symptoms to men and unfortunately the gender bias is still rife.

We are seen as anxious, stressed, menopausal hypochondriacs and Drs can tend to give us a pat on the head, say “nothing wrong dear” and send us packing. It took years and several changes of Cardiologists for me to be taken seriously and it was so good to be proved right ! Men on the other hand tend to be listened to and action taken immediately, I saw this with my husband and although our Cardiologist was always pleasant enough to me once my husband had died his pleasantness disappeared and he became arrogant, rude and dismissive, luckily he left !

[humanbean]

TSH = Thyroid Stimulating Hormone

The results of your tests 8 years ago that   greygoose highlighted, suggest to me that you might have Central Hypothyroidism rather than the far more common Primary Hypothyroidism that most people on the forum have.

In Central Hypothyroidism the problem is not with the thyroid it is with the pituitary or the hypothalamus. Doctors almost never think of it because they've been taught it is rare. People with Central Hypothyroidism can't produce enough TSH for their needs, so the thyroid doesn't get the stimulation it needs to make it produce sufficient thyroid hormones, T4 and some T3.

The fact that doctors only test TSH now means that they effectively can't diagnose Central Hypothyroidism these days because they don't have the information they need to diagnose it.

All forms of hypothyroidism are treated the same way - the missing thyroid hormones have to be replaced with T4 (Levothyroxine) and/or T3 if necessary (Liothyronine). Unfortunately doctors think Central Hypo is so rare they don't need to know about it, which is so short sighted it is just jaw-dropping. But quite a few people with insufficient TSH for their needs end up on this forum.

[greygoose in reply to humanbean]

The OP also has blatant Hashi's, which ought to be enough to get her a diagnosis, along with the low Frees. The reason I didn't mention Central Hypo - although obviously I thought about it - was that the low TSH could just be down to having recently had a Hashi's 'hyper' swing when the labs were done, and the TSH hadn't quite caught up with the lowering levels. And I didn't want to muddy the waters and cause further confusion.

[Butterfly65 in reply to greygoose]

To be honest the thought of having a form of hypo that can't be diagnosed is very frightening. If my private blood tests reveal that I have hashimoto's, as they did 8 years ago, then surely unless the blood results show I've gotten much worse I won't be able to rely on the NHS disgosing & treating me will I?

[greygoose in reply to Butterfly65]

Who said it can't be diagnosed?

As you had Hashi's 8 years ago, you still have it today. It doesn't go away. So, you do know you have Hashi's. And, Hashi's being what it is, your condition will have got worse, as the Hashi's slowly destroys the thyroid. So, it will be less and less able to make thyroid hormone - T4 and T3. So, you can expect those levels to be lower.

The problem arises when doctors only look at the TSH - a totally illogical thing to do because the TSH is very unreliable. If you do have a problem with the pituitary/hypothalamus, the TSH will not rise as it should in accordance with your thyroid hormone levels. If the doctor only looks at the TSH, and it's still in-range, he's going to think there's no thyroid problem because the TSH cannot tell him what the thyroid hormone levels really are.

That said, there are some doctors that do actually know how the thyroid/pituitary/hypothalamus work. They are few and far between but they exist. We know that because there are quite a few people on here that have been diagnosed with Central Hypo. Also, there are some doctors that are open-minded and not hide-bound by the TSH. So, if your results do come back with an unnaturally low TSH, you will need to seek out one of those doctors. And you can do that by asking for recommendations on here.

Very few diseases are un-diagnosable, it's just a question of finding the right doctor.

[Butterfly65 in reply to greygoose]

Humanbeans comment above where it states 'The Fact Drs only test TSH now means ....GG, I hope you don't mind me asking so many questions but something else I've mentioned on older posts that has always concerned me is that my lymphocytes have been notably high on all blood tests I've had in the past, but whenever I've mentioned this to a plethora of GP's they've always said that my lymphocyte count is nothing to worry about & that it can be high due to an infection.

I've repeatedly argued that I found it incredible that during every panel of blood tests I'd had during the course of a quite a few years I've just happened to have another infection that I wasn't aware of & that they didn't seem concerned about or want to investigate.

ouh.nhs.uk/immunology/diagn...

[greygoose in reply to Butterfly65]

Ah, yes, that comment. Well, what she means that in general doctors can't diagnose Central Hypo because they only test TSH. But shove your private test results under their noses and point out to them that the TSH in no way corresponds to the thyroid hormone levels and suggests a pituitary problem and you want to see an endo, and they might just sit up and take notice. I don't think she meant that it can never be diagnosed, just that it's more difficult due to the average doctor's lack of education;

It really makes you wonder why they bother to test all this stuff when whatever the result it's never a problem! lol But yes, the lymphocytes are produced by the immune system to fight off infections. The infection you have, according to your immune system, is your thyroid. It has mistaken your thyroid for the enemy and is trying to destroy it. That's why your lymphocytes are high.

The link you added is about TPO antibodies. TPO antibodies are not the same thing. They don't attack anything.

[Butterfly65 in reply to greygoose]

Oh ok, thank you so much for the info. I had a very fast heart rate when I was admitted to hospital, it was over 180 bpm with atrial fib,

but when I research hypo or hashimoto's & fast heart rate I'm told it's hyper that speeds up the HR & that it's a slow heart rate, (bradycardia) that's associated with hypo so I'm confused.

I also think every GP at my surgery, plus all those who work for the NHS, including cardiologists & HF nurses will use that In an attempt to convince me that my thyroid has absolutely nothing to do with my heart damage.

[greygoose in reply to Butterfly65]

They possibly will, yes. They don't have enough training in thyroid to know that symptoms are not rigidly divided into 'hypo' and 'hyper'. Many, many of them cross over and are the same. For example they will tell you that hypos gain weight and hypers lose it. But many hypos lose weight, and some hypers gain weight; Both hypos and hypers can have high blood pressure, and both can have low blood pressure. Same for sensitivity to temperature: not all hyper suffer from the heat and not all hypos suffer from the cold, it can be the opposite way round. So, symptoms can be deceiving and that's why we need blood tests to back them up.

[Butterfly65 in reply to greygoose]

When I was in hospital I was constantly being asked whether heart problems were something that occured in my family. I was told it may even be genetic but said until they did more tests they couldn't confirm that.

My mum died from a sudden cardiac arrest age 61 whilst in A & E in 1999.

On her medical records it also stated that she suffered a pulmonary oedema & septic shock, yet her death certificate says she died of pneumonia.

I let them know this,

plus that my paternal grandmother who died of a stroke before I was born was aged just 62, & that two or three paternal Aunts died of strokes in their 60's & early 70's.

It was very strange to have Dr's & nurses actually taking the oedema I was suffering seriously for the first time in my life when I was in hospital.

The thing is though,

with my particular heart problems, I was led to believe that it's the right sided tricuspid heart valve damage that's caused the eodema.

Many with heart failure don't have oedema.

The thing is though, & I've made a point of telling the cardiologists & the HF nurses this,

that I've suffered with slight swelling/some type of oedema, especially in my ankles & lower legs

since I was around 7 years old.

I was cruelly mocked by my older sister for having legs that resembled tree trunks.

The elastic at the top of socks always left deep marks on my legs.

Since being an adult my weight has fluctuated,

I've been a size 8 to 10, for many years a size 12 & then up to a size 16.

The HF nurse checked my ankles a weeks ago.

I think she was thinking of increasing diuretics but then realised that although they were still a little puffy it was not pitting oedema.

I told her that in all the years that I've suffered with oedema, I've always pressed to see if my fingers left a dent but they never did.

Even in A & E I had two of them prodding my legs trying to work out if I had pitting or non-pitting oedema,

I think maybe at that time it was pitting though they were more swollen than ever before.

Around 10 years ago I also learned about myxoedema & some fatty substance, for years I've never been able to pinch the skin on the outer part of my upper arm & my skin can feel waxy & clammy. The bones at the back & sides of my ankles have never been visible. They've always looked puffy even when I was at my lowest weight.

[greygoose in reply to Butterfly65]

Gosh! You sound just like me! I've had swollen legs since I was about 8. Wearing those stupid school ankle socks was hell! And I've never been able to pinch the skin up anywhere on my body! Never seen my ankle bones, even when my legs were skinny, due to a Hashi's 'hyper' swing - weight fluctuating all the time - but mainly ovelr-weight. And that's all down to the Hashi's!

My dad died of a heart attack at 72 - one week after being given a clean bill of health by his GP! But I'm pretty sure, now that I know more about it, that he was undiagnosed hypo. And that's the thing: Hashi's runs in families. My aunt had several strokes, and again, pretty sure she was undiagnosed Hashi's/hypo. And that's the family trait they ought to be looking at, the cause of the heart attacks/strokes. But many doctors will be totally unaware of the connection - although it was known about a long time ago - Dr Broda Barnes wrote a book about it: Solved: the Riddle of Heart Attacks. But the old knowledge has been forgotten, discarded.

The 'fatty substance' is mucin. And it's not fat, it's mucous. We all have it just under the skin, but hypos have it in excess and it retains water, and won't let it go!

Non-pitting oedema is more likely to be caused by thyroid problems than pitting oedema.

[Butterfly65 in reply to greygoose]

So mucin retains water but the HF nurses keep harping on about salt. The more I learn the less confidence I have.

[greygoose in reply to Butterfly65]

Well, nurses are like doctors, they know nothing about nutrition. They don't understand salt. Tell them that:

Salt is essential for life, and the body will do anything to hang on to it. If you reduce your salt intake the body will retain water to keep what little you do have. Because when the water goes, the salt goes with it.

An interesting article about salt:

holisticsquid.com/salt-esse...

There are others on my profile.

[Butterfly65 in reply to humanbean]

Thanks for taking the time to reply.

When I saw that you'd mentioned the pituitary & hypothalamus it made me feel like crying because In the very early days of my symptoms when I was younger & more able, both mentally & physically, I'd sit at my daughters computer researching my symptoms & these two often came up In my searches.

I was like everyone else though, no medical training so couldn't understand fully what I was reading but I was desperately trying to put the pieces of the jigsaw together.

It's been absolutely exhausting & demoralising.

If you're correct would this change the blood tests that Slowdragon said I needed?

[holyshedballs]

Thank you for posting your experience. it is a very good first hand account of why heart health should be checked as well as a full thyroid health check.

Its a salutary lesson for all of us, to listen to our bodies.

I agree 100% with greygoose. I suspect it is likely that the lack of T3 over the years has probably caused your heart issues, but I have no knowledge of you and your history so I cant say for certain!!

Its outrageous that the doctor missed your oedema (accumulation of fluid) in your ankles legs stomach and hands. these a classic signs of heart problems.

it especially bad because a 12 lead ECG machine costs around £2000.medisave.co.uk/products/sec... Very much an inexpensive item for a GP surgery to buy. Oh, it s the properly trained Nurse who will operate the machine and interpret the results that will add cost and reduce profit for the surgery.

still the GP could refer a patient to a cardiologist to use their ECG machine, but they don't.

on my soap box now, it is very poor considering that one of the so called reasons that doctors want to use to reduce doses is the suspected risk of Atrial Fibrillation. yet they never measure heart function when they say that so they dont have a base line to refer to if symptoms occur

🙄

[Butterfly65 in reply to holyshedballs]

Hello & thanks for taking the time to reply. I agree with you. Until I watched a few British heart foundation videos on YouTube I had no idea that a simple BNP blood test could diagnose heart failure.

[SilverSavvy]

Hello Butterfly65. I have no greater wisdom to offer you than you have already received here but I just wanted to say how extraordinarily sorry I am that your health issues have been so very badly handled for so long. You are an amazing human being to have battled through this since the start and I send both you (and your husband who must be so frightened for you) the biggest virtual hug. The folks here will support you. You are no longer alone. I wish you all the best for the future.

[Butterfly65 in reply to SilverSavvy]

Thank you so much for taking the time to reply to my post & for your kind words - It means alot. 💜

[Dandelions]

My mam has also got heart issues, which I believe are due to untreated thyroid issues.

Please advocate for your thyroid issues to be looked at or have your daughter and husband advocate for you! Don’t let them tell you, it’s fine. They’ve told you this before when it wasn’t true. So ask for a print out of your results and come back on here to ask guidance.

If doctors are unwilling, you can do a private test yourself.

Take care!

[Butterfly65 in reply to Dandelions]

Hello, thanks for taking the time to reply - I will.