Hello again. 59 year old female recently diagnosed with heart Failure possibly due to many years of untreated hashimoto's disease.

[Butterfly65]

I do hope dear greygoose is well & she gets to read my post, amongst others.

Recently spoke to heart failure nurse who spoke to my cardiologist regarding years of my having untreated hashimoto's.

I actually found an old letter from the last endo I saw in the town I used to live in stating that I had hashimoto's & that it needed to be monitored/ tested yearly dated 2017.

Not long after I received said letter, I moved away from my hometown so had a different GP surgery who never bothered to check my thyroid annually.

Whenever it was tested at my request, it would always come back within range anyway.

Every GP I saw in my village surgery made me feel like a hypochondriac who was wasting their time.

I cried after ever visit & felt very lost, alone & frustrated.

Some of my older posts on thyroid uk are testimony to this

In the end I gave up going to see Gp & followed the thyroid pharmacists advice re diet & supplements but still felt unwell most of the time.

In 2022 I was desperate to lose weight & feel better so I started the ketogenic diet & remained on it for approximately 10 months.

During that time I'd never felt better & for the first time in around 10 years I was able to get back into my size 10/12 clothes that I'd stored away.

I should have tried to exercise but I didn't, so despite my weight loss I still had flabby loose skin.

However,

I'd started keto in the spring, so milder spring, summer & Autumn months were easy but as soon as christmas had passed I craved carbs again.

Recently had TSH bloods done again that came back within range, which I expected.

After speaking with HF nurse again, she & my cardiologist have written to my GP, who I'm seeing this Friday, requesting a referral with an endocrinologist.

Last time I posted to thyroid uk I was advised to have private bloods done again but money has been very tight.

At the moment I'm really, really struggling both physically & mentally.

I've just gotten over the flu that lasted three weeks.

I'm on seven heart failure meds, including diuretics, blood thinners, meds to lower heart rate & for atrial Fibrillation.

Temporarily had to come off diuretics because my blood pressure dropped too low during bout of flu, still not back on them. Told I have to wait for blood pressure to climb a bit more.

Tired all of time unable to do the simplest of heart rehab exercises or housework which Is really worrying me.

Sweating profusely especially during night & after shower.

Having to take much cooler showers because of sweating & heat intolerance.

Have to dry myself quickly & sit down straight after shower.

Hair is falling out in handfuls & very dry.

Last year before HF diagnosis I had to have my long hair cut very short due to severe dryness.

I also paid to see a trichologists who after examination, told me I had telegon affluvuim that I've read is a symptom of hashis.

When I contacted GP last year regarding the above,

all they could offer me was HRT & anti-anxiety meds.

I'm 5 ft 5. 5 inches & weigh around 11 stone, so I know I'm around 2 stone overweight but don't know if some of that is still water weight.

Water also accumulates on lungs with HF.

I lost a stone & half in water weight during an eleven day period in hospital in September after being drip-fed diuretics & when I came out of hospital i weighed 11.2 stone.

I'm really having difficulty sleeping again due to anxiety, wondered if anyone could reccomend any supplements that might help.

I have had a very low libido since my oopherectomy in 2012. Something I should have mentioned more often to the different Gps I saw.

I'm still awaiting on results from Papworths MRI scan that I had around seven weeks ago.

My daughter who is now 36 was diagnosed hypo at 14, not long after we'd lost both of my parents prematurely.

I have a packet of her levothyroxine ln my kitchen cupboard that she forgot to take home last time she stayed, I feel so desperate I feel like taking them.

I'm at a point now where I can't tell if my symptoms are hashimoto's, heart failure or side effects from seven different medications.

Sorry ...

feeling very desperate & low.

I would also just like to add,

to anyone suffering with thyroid conditions,

but especially to those of you like me who have never been treated.

There is a blood test for heart failure that I've only recently become aware of so please do make yourselves aware of all symptoms related to heart failure & never be afraid to ask your GP for this simple blood test.

I'm now left very angry that in all of the years I've been going back & forth to see different GP's at my surgery with symptoms such as severe ankle, feet, finger & tummy swelling that I thought was bloating, turned out to be oedema that is associated with HF.

[DippyDame]

Having proof of being diagnosed with Hashi's should alert medics to pursue this.

Your symptoms indicate hypothyroidism. See list here

thyroiduk.org/signs-and-sym...

Use the tick list to mark off all your symptoms and stick it under the noses of those clowns/ medics!!

Can you post any recent labs?

What did your doctor test?

I bet that didn't include FT3!!

FT3 is the most important result followed by FT4

Science proves TSH ( especially not alone) is not a reliable marker

bmcendocrdisord.biomedcentr...

Time for a reassessment of the treatment of hypothyroidism

John E. M. Midgley, Anthony D. Toft, Rolf Larisch, Johannes W. Dietrich & Rudolf Hoermann

I suspect your T3 is low possibly the result of poor T4 to zT3 conversion

The heart needs a great deal of T3 and I would be concerned that your heart failure may be connected to low T3....a cardiologist should be able to make this connection. Ask for a referral.

The bottom line...

For good health every cell in the body must be flooded with T3 by way of a constant and adequate supply

FT3 must be tested along with FT4 to prove low T3

Don't take your daughter's levo it will only skew any tests you have if taken for a short time....it doesn't work like taking a paracetamol for a headache!

You've been very poorly treated and your medics need to get their act together pronto!

Water weight is a red flag symptom of hypothyroidism/ undermedication....see the above list

You need a full thyroid test to include...

TSH, FT4, FT3, vit D, vit B12, folate and ferritin

The supporting nutrients are vital

Recently had TSH bloods done again that came back within range, which I expected.

As above, ....TSH is not adequate or reliable testing

It is absolute nonsense to be told you are fine/normal just because your results are in range....that means nothing. You need to aim for the exact point within the range where you feel well and for that you need to be taking the correct dose of replacement hormone for you as an individual......not what Jenny-next-door might be taking!!!

So...

A full thyroid test....private if possible. Birthday or Christmas money gifts maybe!

An appointment with a cardiologist to sort out all that heart medication

A refusal to be tested by TSH alone

Make a list/note of all you wish to ask/say to those medics because they need to be educated!!

Take someone with you to appointments

I understand how you feel, I had to read and learn when I became very ill with a form of thyroid disease that most doctors don't understand. I now self medicate and have recovered....but that's another tale!

The NHS has lost the plot as I discovered recently when I developed Chronic Sinusitis and spent 6 hours, struggling to breathe, on a hard metal chair in a draughty corridor in A&E, after I was removed from the bay I was in. for another patient I'm aged 79!!!

You can do this....

Pull up 'the big girl pants" and politely but firmly state your case and self advocate because your treatment is dreadful.

I never imagined myself doing that, but I did and came out stronger than before

Good luck!

[Butterfly65 in reply to DippyDame]

Hello Dippy Dame & thankyou for taking the time to reply to my post Yes,

I was pleased when I found the letter, my daughter emailed it to my cardiologist who has surprisingly ignored the so called " Normal Range results & has requested a GP referral for an endocrinologist appointment.

Over the years I've printed out & filled in several of those symptom forms from thyroid uk & I've given them to several GPs but I expect they've binned them as soon as I've left their rooms.

My husband has tucked last blood results away somewhere, when he arrives home I'll ask him for them & try to upload them.

I had to have several bloods tested so it's a very long list but I what I found Is that many of them,

such as b12 & ferritin & Iron, plus a few more were over range, despite me not supplementing,

but read that some of the seven different meds I'm having to take for heart failure can elevate them but won't know for sure until I've spoken to either GP or HF nurse.

[DippyDame in reply to Butterfly65]

Good I hoped a cardio would listen and do that....they sometimes seem more clued up than endos!

Hopefully you're on the home run now

Please keep us posted

[Butterfly65 in reply to DippyDame]

Thanks. I just found my last bloods. Re thyroid they only tested TSH & TPA's

TSH was 1.39 mU/L 0.30 -4.20

TPAs 12 IU/mL 0-34

Not going to tell us much are they?

[SlowDragon Administrator in reply to Butterfly65]

Strongly recommend you get full private blood test

Perhaps as a self awarded Christmas present

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

Also both TPO and TG thyroid antibodies tested at least once to see if your hypothyroidism is autoimmune

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

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

About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high TPO and/or high TG thyroid antibodies

Autoimmune thyroid disease with goitre is Hashimoto’s

Autoimmune thyroid disease without goitre is Ord’s thyroiditis.

Both are autoimmune and generally called Hashimoto’s.

Significant minority of Hashimoto’s patients only have high TG antibodies (thyroglobulin)

NHS only tests TG antibodies if TPO are high

20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis

In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)

Essential to test vitamin D, folate, ferritin and B12

Lower vitamin levels more common as we get older

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

What vitamin supplements are you taking

VERY important to test TSH, Ft4 and Ft3 together

?

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...

[DippyDame in reply to Butterfly65]

Not going to tell us much are they?

Clearly not....but a full thyroid evaluation will!

Follow SlowDragon's advice below, re testing

Only with those results will you have the key to sorting this out.

Or...

The cheapest basic test is using Monitor My Health....it won't give you full results but will give an immediate TSH, FT4 and FT3 which is a very good first step.

A full thyroid test can follow when you gather the cost of that

thyroiduk.org/testing/priva...

monitormyhealth.org.uk/thyr...

Ìt costs only £32..... and get a 10% discount using the code THYROIDUK10

Medics cannot dimiss this test as, "just a cheap test off the internet" because Monitor My Health (MMH) tests are carried out at the Royal Devon University Healthcare NHS Foundation Trust laboratory. They provide an easily accessible, safe, regulated service that promotes disease prevention and wellness.

It could change your life!!

[Butterfly65 in reply to DippyDame]

Thanks again.I had my first appointment today with my GP since being diagnosed with HF at the end of August.

It was extremely disappointing.

He was willing to accept that I have hashimoto's but looked me straight in the eye & told me that he 100% believed there was nothing wrong with my thyroid & that I was barking up the wrong tree. I felt as though he was on the defensive, looking after the interest of his colleagues, the surgery, & the NHS.

[DippyDame in reply to Butterfly65]

Well he's clueless isn't he!!

How the h**l those medics get through med school defies me! This one doesn't even possess basic knowledge of thyroid disease

It's more than disappointing Butterfly, it's potentially dangerous that these clowns are treating patients

As you know Hashi's is a common cause of hypothyroidism.

If you have Hashi's you are hypothyroid and if you are hypothyroid you need to be treated with an appropriate dose of replacement thyroid hormone (s)

I'd suggest he is covering his ignorance by denying your condition because he doesn't know how to treat you

I'm sitting her fuming on your behalf!!

In your shoes I would first complain to your Practice Manager stating that you are worried about the diagnosis you have just received from Dr X because it contradicts the accepted knowledge about hypothyroidism and Thyroid Autoimmune Disease ( aka Hashimoto's) And that he is unable to offer you appropriate medication to relieve your symptoms.

I would then ask to see another doctor in the Practice with a working knowledge of hypothyroidism/ Hashimoto's.

BUT. ...I would wait until you have current lab results either from a Monitor my Health basic test or more advanced tests from Medichecks which would help back up your case

ALSO consult with your cardio who should know better

An overview of Hashimoto's Disease

Hashimoto's disease is an autoimmune disorder that causes the immune system to attack the thyroid gland, which can lead to a decline in thyroid hormone production. This condition is also known as Hashimoto's thyroiditis, chronic lymphocytic thyroiditis, and chronic autoimmune thyroiditis.

Symptoms of Hashimoto's disease include:

An enlarged thyroid, also known as a goiter

Fatigue

Weight gain or difficulty losing weight

Thin, dry hair

Slow heart rate

Joint or muscle pain

Constipation

Pale, puffy face

Sensitivity to cold

Heavy or irregular menstrual periods

Hashimoto's disease is most common in middle-aged women, but it can occur at any age. It's more likely to develop in people with a family history of thyroid disease.

Your GP was the one barking up the wrong tree!!

You might find the following helpful to back up your case

thyroiduk.org/if-you-are-hy...

thyroidpatients.ca/2020/04/...

You will most likely have to self advocate in a polite but firm way.

Many of us here have had to do this....or learn to do so!

This is about your health... the task of the medical profession is to treat you appropriately. This clown of a GP isn't achieving that so you need to look elsewhere.

[Pastille in reply to Butterfly65]

It's so annoying to read that!

My own GP has a favourite default statement of 'No, I'm not convinced', and I've heard it several times now, only for me to be right all along.

Thyroid problems were peri menopause, and arthritis was depression!

Hashimotos? Forget that! It doesn't even exist!

I have a condition called Friebergs in my left foot, and it was only from going to the hospital with that deteriorating so badly, that I was told I DO have arthritis and that was making my foot much more painful, no cartilage left!

(Incase of any confusion, Frieberg's does lead to arthritis at a late stage, anyway, but I was relying on my right side more, due to the pain, and this either caused or exacerbated Osteo arthritis in right hip and knee, as hospital discovered but GP 'not convinced')

He shouted at me once, during a phone appt, for going gluten free! I happened to mention it (thinking it was a good thing! I'm helping myself!)

"Well why have you done that when you're not even Coeliac? I can't keep up with you!

To this day, I still don't know why that upset him so much!

Glad to see you got some good replies here. It's criminal what you've had to go through 😔

[Butterfly65]

Thanks again for replying. My last blood tests revealed that my thyroid peroxidase antibodies were in normal range 12 IU/mL 0- 34 & I don't have a goiter, or at least I don't think I have a goiter.

[radd in reply to Butterfly65]

Butterfly65,

A goitre refers to swelling of the thyroid gland and isn’t always present in hypothyroidism. It depends upon your bodies autoimmune state and the duration of your hypo journey.

There is another condition called Ords involving TRAb that block TSH from receptors (no matter how much is showing in the blood stream). We need TSH for conversion of T4 to T3, and so Ords has several consequences:

- may dramatically lower T3 levels

- reduces overall thyroid hormone production

- reduces thyroid gland volume in a case of ‘use it or lose it’ which impairs further production.

Therefore, the end result is the same as Hashi and that is hypothyroidism.

[sparkly]

Oh Butterfly, I'm so sorry reading all that you have through and now in HF. It took me 8 years to get diagnosed with thyroid issues as bloods always just in range even though I could barely function, mainly housebound/ bedbound at the very end before finally diagnosed and on medication. You had an oophorectomy in 2012 which put you straight into menopause. Did you start hrt straightaway and still taking now? Also when ovaries are removed testosterone replacement is so important but rarely gets mentioned to you in hospital, let alone prescribed. Your libido will have up and left with your surgery and testosterone should be prescribed. Testosterone is so much more than libido. It was life changing the missing piece for me.

Hrt is not just for peri/menopause symptoms but for future help with heart, bone and brain protection.

Also thyroid and sex hormones have a close relationship and can throw each other out of sync which happened to me when i didn't know i was in perimenopause. I had major issues with my T3 medication no longer working. Once I was started on hrt things became balanced again.

It's very confusing to know what symptoms are thyroid related and what is peri/ menopause as they can overlap.

For me, some on going symptoms I thought were due to thyroid all disappeared when I started testosterone.

It's vital that you should be on testosterone alongside oestrogen and progesterone.

[Butterfly65 in reply to sparkly]

Hello & thanks for replying. I was put on HRT immediately but every HRT tablet I tried made my symptoms worse so I gave up on them but I was supposed to be on them until I was 52, was 47 when had ovaries removed now 59.

Then around 7 years ago gp suggested hrt patches, got on quiet well with patches but then suddenly there was shortage everywhere so no one could get them...they were called everol conti.

Went back on them last year but felt unwell so stopped using them.

[Pastille in reply to Butterfly65]

Hi Butterfly65

I recognised your name and pic. & just thought I'd say hi, I've not been on here for a very long time.

Sorry to hear you are still facing all these challenges after all this time, it's outrageous, I really hope you get some good advice and help.

I also wanted to put my two pence worth in and say please don't take Levo if you have a bad heart. It really affects your heart and you are at risk of heart attack if you take too much, which is very easily done, I can't even increase mine because my heart starts pounding with the tiniest amount increase !!

I was glad to readof the simple blood test for heart trouble. Thank you.

Take care, I hope you can get a diagnosis soon !

Diane x

[Butterfly65 in reply to Pastille]

Hello Diane, it's really good to hear from you again, I hope you are well, we used to have a bit of a giggle didn't we? 🤭

I have an appointment with a cardiologists on the 9th of this month to discuss my heart MRI & Echocardiogram results.

Hopefully he'll be able to tell me what surgical proceedures are suitable, but from what I can gather from other users on the British heart foundation forum on here,

it looks as though I might need OHS, but of course won't know that for certain until cardiologist informs me of next steps which I hope will happen next Thurdsay.

If you're ever concerned about your heart Diane please don't ever hesitate to get yourself to you nearest A & E asap.

If you look at my more recents posts on here,

you'll get a better understanding as to what has happened to me.

My daughter is hypo, she's 36 now with a little girl of her own, she's recently lost just over two Stone, she's changed her eating habits & now sticks with a low carb diet so is only taking a very low dose now, she says she's never felt better.

She said that as soon as she started losing weight she knew her levothyroxine needed reducing because of her racing heart beat.

I've never been medicated for thyroid or hashimoto's though.

Years ago I did purchase my own t3 but after just a few days I was too afraid to take it, don't suppose I will ever know if I made the right decision. 🤷‍♀️

But please take my advice re palpitations & racing heart, A & E will normally see any heart related patients sooner than others,

that's regardless of whether you were bluelighted to A & E or you took yourself there,

luckily, I was seen within around 15 minutes even though it was busy. - Michelle Xx

[Pastille in reply to Butterfly65]

Hi Michelle 👋

Happy New Year !!

We did used to have a giggle didn't we? There was a time when I was on here quite a bit. I'll never forget finding this place, I was in work and feeling so unwell on 50mcg Levo and desperately searching for help, when I came across this site it was like an angel had appeared and given me hope. 8 years ago! Wow, where does the time go eh.

I always get a bit scared logging back in because I hate to see when people have passed on. Especially the 'integral' characters, you know. It makes me so sad.

When you get so used to logging in and seeing names like greygoose. Her unique wisdom & wit, and suddenly I see she has not been here for some time 😔 I do hope she's okay 🙏 it's mad how you can get to know people from a place like this, just from typing words. She used to make me laugh so much, she's hilarious, blunt as a rock but not in a bad way. And then I noticed Seaside Susie's name has 'remembering' before it. These people are missed, not just for their invaluable knowledge and altruism but their presence and personality. There really should be a better way to pay tribute to them after all the energy they have put into this forum.

Anyway, it got that way where I couldn't find the time to log in as much, and then I forget and time moves on. I always feel a bit bad just 'turning up out of the blue' and asking for help, but it is here for that so....

I can't imagine how you've coped, you know. It's so hard even with a diagnosis, the Dr's are clueless, people think you're exaggerating ( well they do with me). None of my family would even accept I was unwell, it was awful. They thought I was making excuses and I've had to cut so many people off. But at least I had the Dr's diagnosis, in your situation I would have lost my mind, you know. It must have been a nightmare for you. I hope you don't have to have OHS, you've been through so much, but, if you do, we'll it's amazing what these surgeons can do.

Are you loving being a grandma? Are you granny or nanna? My two call me nanna they're 12 and 10 now ! Your daughter did well to lose that weight when hypo, she must be very disciplined.

[Butterfly65 in reply to Pastille]

Happy New Year Diane. I hadn't been on here for years until recently HF diagnosis. I'd given up with my GP's. They made me feel like a hypochondriac so I'd just feel very angry, desperate & disappointed after every appointment.

Greygoose is still active on here but probably not as often as she used to be.

I wasn't aware that Seaside Susie had passed though.

I agree that considering these ladies give up so much of their time to help others there should be a better way to pay tribute to them. X

[Butterfly65 in reply to Pastille]

Like you,

I too had to cut people out of my life because in truth Diane, most just have too many problems of their own to cope or be bothered with anyone else's problems,

plus any health issue that isn't visible to the eye seems very difficult for people to understand or/& believe.

If we break a leg or an arm most can deal with that & offer their help.

But what makes it all the more difficult for us is when our Gps refuse to accept that our symptoms are genuine & they treat us like hypochondriacs who are wasting their time.

Which In turn leaves our families & friends wondering if its all in our minds.

When I think deeply about what I've gone through, not just after my oopherectomy, but also quite a few years prior to it, I do know that I must have been incredibly strong mentally to have endured what I have without ending up in a psychiatric ward, or worse. Right now though I'm not feeling strong mentally or physically & the thought of OHS absolutely terrifies me.

At the moment I feel frozen with fear to be honest & my physical health has obviously deteriorated as well as my mental health in recent months.

I've got back In-touch with a few old friends for a bit of support but most are very busy with their own lives & families. X

[Pastille in reply to Butterfly65]

Of course you're scared, it's your heart of all bloody things !! You must be constantly on edge with that hanging over you like a big heavy cloud !! But listen, I'm not just saying this, every person I know who has had heart surgery has come out of it amazingly, a new lease of life, and always praising their surgeons so much. Heart surgeons are the elite of people !! They are amazing at what they do. And never forget how strong you are because if I'd been through what you had, I'd be doolally, I'd have been sectioned, I know it 💯.

I know pple have their own stuff and I get that but i was not being treated kindly at all when I didn't turn up for things and I thought I can handle having to keep it to myself, I can handle pretending something else is wrong with me ( because that's what it came to) but I couldn't cope with getting crap off people for not jumping when they said jump. So I had to tip the boat up 😆 and think of number 1

[Pastille]

Aw I'm so glad to hear that shes okay.. She probably wouldn't know me from Eve but not the point lol. There is a link dedicated to Seaside Susie and a nice piece of writing from Helvella. healthunlocked.com/thyroidu...

I'm glad to see that, but sad to hear of her passing, she was so helpful.