Still suffering with heat intolerance & now pal... - Thyroid UK

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Still suffering with heat intolerance & now palpitations which have become worse with breathlessness when walking HYPERTHYROIDISM DIAGNOSIS

Catlover2145 profile image
18 Replies

I was diagnosed as overactive thyroid April this year and admitted into hospital with AF caused by my thyroid. Started Carbimazole 20 mg on May 10 which was lowered to 5mg on 21 August following blood tests.

Initially my heat intolerance improved after three weeks of Carbimazole but started again in later July. The endo doctor dismissed this as due to the heat which I knew it wasn’t.

I have for the past month been getting palpitations again which for the past week have become more constant and on Wednesday I struggled with breathlessness to the point of having to stop walking three times on a ten minute walk.

I am posting my most current blood results taken this Wednesday, 16/10.

I am going to email the endocrinologist today, has anyone any idea of why I might still be experiencing hyperthyroidism symptoms?

I had mentioned palpitations in August but the doctor dismissed that as anxiety. I do have anxiety for years but it never involved palpitations in a regular basis especially on and off all day!

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18 Replies
RedApple profile image
RedAppleAdministrator

Catlover2145, There is no FT3 result showing on your image. Without this detail, the picture of your current thyroid status is incomplete.

This is important because, whilst TSH is at a reasonable level, and FT4 is rather too low, it is not impossible that your thyroid is pumping out the wrong amount of T3. That could account for your symptoms.

On the other hand, your symptoms could be from now having too little FT4. Symptoms of hypERthyroidism and hypOthyroidism can cross over.

Symptoms of hypERthyroidism and hypOthyroidism are NOT mutually exclusive. i.e. you can have palpitations with hypER as well as with hypO, and heat intolerance can occur with both hypO and hypER.

Catlover2145 profile image
Catlover2145 in reply toRedApple

Here are my most recent Free T3 results however the Free T3 was meant to be added to my most recent bloods this week but she didn’t so I phoned this morning and was told they will be added on. I hope by Monday so I can do my new test.

Thank you for explaining about the symptoms. I thought those two were associated with being Hyperthyroid only.

Free T3

Normal range:3.10 - 6.80 pmol/L

17/4/24 10.2

10/5/24 10.9

RedApple profile image
RedAppleAdministrator in reply toCatlover2145

Unfortunately those FT3 results aren't helpful now because you need to have all three from the same blood draw (TSH, FT4, FT3).

Do come back with the full results as soon as you can after your next test (hopefully next week)

Catlover2145 profile image
Catlover2145 in reply toRedApple

Thank you, I will. 🙏🏻

PurpleNails profile image
PurpleNailsAdministrator

Dr will say all good because results in range, but that FT4 is low & you’d expect a higher TSH. TSH is very unreliable & you have not had a FT3 result? FT3 might but out of balance.

I found symptoms worse when FT4 low & FT3 high than I did when level were abnormal high or low but balanced. Just to add to the Confusion.

Doctors won’t admit you can have symptoms when results in range, anxiety is a symptom too & palpitations common with abnormal thyroid & also with issues such as low ferritin.

Catlover2145 profile image
Catlover2145 in reply toPurpleNails

Thank you. And for saying about the confusion as I’m finding it all very confusing especially when reading others posts and people seem to understand everything. Xx

Catlover2145 profile image
Catlover2145

All thyroid blood test results since April ‘24

Anti-TSH-receptor antibodies

Normal range: 0 - 1.8 IU/L

17/4/24 3.2

10/5/24 3.4

Thyroid Peroxidase Abs (TPO)

Normal range: 0 - 34 IU/mL

10/5/24 266

Free T3

Normal range:3.10 - 6.80 pmol/L

17/4/24 10.2

10/5/24 10.9

Thyroid stimulating hormone

Normal range: 0.27 - 4.20 mIU/L

17/4/24 Value <0.01Low

10/5/24 Value <0.01Low

26/6/24 Value <0.01Low

19/8/24 0.20

16/10/24 2.17

Free T4

Normal range: 11.9 - 21.6 pmol/L

17/4/24 25.8

10/5/24 33.4

26/6/24 20.5

19/8/24 11.0

16/10/24 12.5

SlowDragon profile image
SlowDragonAdministrator

Suggest you get FULL thyroid and vitamin testing done asap

Request GP retest TSH, Ft4 and essentially include Ft3

Also ESSENTIAL to test vitamin D, folate, ferritin and B12

What vitamin supplements are you currently taking

Have you definitely had Graves’ disease confirmed by high TSI or Trab antibodies

Your very low Ft4 suggests you are HYPO……but you might have high Ft3

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

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...

Monitor My Health (NHS private test service) offer thyroid and vitamin testing, plus cholesterol and HBA1C for £65

(Doesn’t include thyroid antibodies)

monitormyhealth.org.uk/full...

10% off code here

thyroiduk.org/testing/priva...

RedApple profile image
RedAppleAdministrator in reply toSlowDragon

'Request GP retest TSH, Ft4 and essentially include Ft3'

Catlover2145 has done this. Possibly best not to confuse her with all this private testing info at this point, as she is already under the care of an endo and feeling anxious and overwhelmed.

SlowDragon profile image
SlowDragonAdministrator in reply toRedApple

But if GP won’t test ….or lab refuse to test Ft3 she may need to test privately

GP / endo should have been testing Ft3 and vitamin levels

Catlover2145 profile image
Catlover2145 in reply toSlowDragon

Yes Graves’ disease was confirmed in May ‘24.

I have a GP appointment next week and will ask for them to do the blood tests but will test privately otherwise. I have been making sure I fast and do the blood tests before 9am since I learned it’s best in a thyroid FB group back in May.

I currently take Vitamin D supplement only as it was low in March however everything else was fine when tested in the summer. I’m trying to eat very healthy and have cut out alcohol.

Thank you for all the links and advice 😊🙏🏻

SlowDragon profile image
SlowDragonAdministrator in reply toCatlover2145

10/5/24

Thyroid Peroxidase Abs (TPO) 266 range 0 - 34 IU/mL

your high TPO suggests possibly have Hashimoto’s as well as Graves’ disease

Though you can have slightly high TPO antibodies with Graves’ disease

Have you had ultrasound scan of thyroid?

If not consider requesting one at next endo appointment

Might need “block and replace”……block with Carbimazole and replace with levothyroxine

Your low Ft4 may well be causing issues

Catlover2145 profile image
Catlover2145 in reply toSlowDragon

Thank you

No I’ve had no scan of my thyroid.

I felt listened to at my last appointment but everything I said or asked was disregarded in the letter afterwards and they just said I was fine with no symptoms which isn’t what I said at all.

It’s left me feeling like I can’t see the point in bringing up symptoms if they are disregarded. And angry with their response if ilm honest.

My GP is good so I’m going to explain all this to her next week and take it fr there.

arTistapple profile image
arTistapple in reply toCatlover2145

“It’s left me feeling like I can’t see the point in bringing up symptoms if they are disregarded.” Eloquent explanation of your all too real understanding of ‘our’ situation. I think that’s what maybe we should be questioning of our ‘medical helpers’ on. Put the ball back in their court. I know I try to stick with one area of symptoms (I have so many) to help them! That does not work either.

Catlover2145 profile image
Catlover2145 in reply toarTistapple

I think I will at my next appointment. I was quite angry when I read the letter saying all was fine regarding symptoms when I’d explained it wasn’t.

I feel at a loss as I posted on a FB forum and was told I’m hypothyroid by the only admin and should get a new doctor. I’m with the NHS and it’s not that easy or quick. I’ve fond exactly that for my sleep apnea.

I don’t want to end up in hospital again due to AF.

Thank you for taking the time to respond. 🙏🏻

pennyannie profile image
pennyannie

Hey there again ;

It appears you are dealing with Graves and Hashimoto's - both thyroid auto immune diseases - as you have positive and over range TRab antibodies for Graves and positive and over range TPO antibodies for Hashimoto's :

This is not unusual when the thyroid malfunctions as there can be some overlap in various antibodies -

Graves treatment takes precedence as with Graves the T3 and T4 can keep rising higher and higher and is considered life threatening if not medicated with an Anti Thyroid drug - and if the heart is involved - a beta blocker.

With Hashimoto's - you tend to experience ' temporary swings ' in symptoms and T3/T4 levels, with the T3/T4 falling back down into range by themselves and longer term with further swings and thyroid AI attacks your thyroid becomes disabled with you becoming hypothyroid and needing the support of medication - thyroid hormone replacement.

So this may have just been a temporary ' swing ' in higher T3/T4 levels - which is common with Hashimoto' s but I would have thought the AT drug would have been at a sufficient level to block such a swing.

Some people are also prescribed a beta blocker when the heart becomes involved - if suitable for you - the preferred drug is Propranalol - as it also tends to slow down the conversion of T4 into T3 - as it is generally too high a level of T3 for you that causes all the symptoms -

just as too low a level of T3 for you - though likely in the range - can lead to symptoms of hypothyroidism.

In order to understand and read thoroughly any thyroid blood test we need to see a TSH, Free T3 and Free T4 drawn and taken from the same blood draw.

Catlover2145 profile image
Catlover2145 in reply topennyannie

I’m on propanalol since April and am taking 1-2 doses per day at the moment (40mg). But what I’ve noticed since Monday is the palpitations starting again within 3 hours of the tablet which is new to me since starting the high dose back in April (4 x 40mg a day back then until I started Carbimazole).

I’m wondering if I should go for an ECG as this was how my AF was picked up. I thought I was fine and it was anxiety.

pennyannie profile image
pennyannie in reply toCatlover2145

Your T4 is now low in the range and it could be that your T3 is now too low in the range and causing these symptoms - but without the T3 and T4 blood test - its just a guess -

Maybe the Propranalol was reduced down by too much too soon - going from 4x 40mg in April to 1/2 x 40 mg now :

Maybe the AT drug was reduced by too much too soon - going from 20 mg to 5 mg - mid August -

Were both these drugs adjusted down at the same time ?

it's difficult to know as we haven't the full blood test results -

and dealing with Graves can feel a bit like dealing on a roller coaster but without any of the fun

and yes, if it puts your mind at rest, ask for an ECG :

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