palpitations and cold: hi all, newbie here. I was... - Thyroid UK

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palpitations and cold

Stokie108 profile image
14 Replies

hi all, newbie here. I was diagnosed under active 4 yrs ago. No symptoms but it was picked up in a blood test. 4 years on and have been suffering palpitations for around 16 months. All heart related tests are normal so it’s been put down to the 75mg meds daily. It really can be debilitating at times. Also the cold. As a gardener it’s making me reconsider my job as in the last month it’s unbearable. Heating full on and sitting with numerous hot water bottles when I’m home.Not much I can do about either but wanted to post as I’m sure many will be in the same boat.🤔

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TiggerMe profile image
TiggerMeAmbassador

Welcome 🤗

Have you any recent results with ranges as it sounds very much like you are under replace 75mcg is a dose suitable for a petit person... 47kg?

Also if you have any results for folate, B12, Vit D and ferritin they would be useful too

Stokie108 profile image
Stokie108 in reply toTiggerMe

hi, I’m 86 kg. Recent tests show I’m in range for everything yet I’m still getting all the symptoms🤨

TiggerMe profile image
TiggerMeAmbassador in reply toStokie108

In range isn't really much use as the range is quite wide, TSH needs to be 1 or under and fT4 around 80% along with fT3 (the active hormone) 70% ish

But we need to find what is optimal for you, as a rough guide we'd expect you to be on 140mcg daily

Stokie108 profile image
Stokie108 in reply toTiggerMe

I had the test on Monday and drs called me the day after to say no change in dose needed. Ive been on The same dose since day 1🤨

TiggerMe profile image
TiggerMeAmbassador in reply toStokie108

Many Dr's really haven't a clue I'm afraid which is why this forum is so busy 🙄

I was like you, on a downward spiral for years before I found the forum and got treated properly

TiggerMe profile image
TiggerMeAmbassador in reply toTiggerMe

Post any that you have up and we'll give you some pointers

Palpitations due to low thyroid hormone levels and quite likely low vits and mins as we don't absorb well and often need supplements

Stokie108 profile image
Stokie108 in reply toTiggerMe

It’s not like I haven’t pushed the drs. I know some of the symptoms and have gone back to them with these.I had a hospital visit last week with sudden painful stomach problems. Nothing I’d eaten but painful enough to pass out. Diagnosed as gastritis. I’m wondering if it’s all linked? Or just coincidence.

TiggerMe profile image
TiggerMeAmbassador in reply toStokie108

All linked to hypo, low gut motility as your system is running slow which often causes constipation, hypo's suffer from low stomach acid so we struggle to break food down and absorb

They do like to fob you off with other diagnoses as they just aren't very knowledgeable

TiggerMe profile image
TiggerMeAmbassador in reply toTiggerMe

If you get your blood tests after work this will show a lower TSH as it has a circadian rhythm, need to do tests fasted, pre 9am and last dose of T4 24 hours before

Charlie-Farley profile image
Charlie-Farley in reply toStokie108

'In range' analogy for you to show how wrong just getting you 'in range' is. Clarkes have a shoes range for men and women starting at 2 going all the way up to 15. So we all know shoes are particular and need to fit. So do the thyroid hormones we need they need to be calibrated to our needs not just falling within a range. 😉👍

Sparklingsunshine profile image
Sparklingsunshine

75mcg is only one step up from the starter dose of 50mcg. It sounds as though you are undermedicated. As a male you are very likely to need considerably more Levothyroxine. You can times your weight in kgs by 1.6 to give you a rough estimate of your required daily dose.

Charlie-Farley profile image
Charlie-Farley

Doctors frequently under medicate as they have been given poor guidelines and if a patient’s TSH and thyroid hormones are not ‘aligned’ the thyroid hormone replacement is WRONGLY sacrificed to keep the TSH - a pituitary hormone in range.

And what is TSH? It’s a pituitary hormone that’s produced to stimulate the thyroid to produce thyroid hormones. So it is one of those eternal conundrums as to why so many so called intelligent people follow these guidelines without question.

Symptoms are an indicator of under medication. Blood tests should be calibrated to the patient and used as a guide to get you well. Doctors frequently do not (if ever) do the full suite of tests required to make a meaningful assessment and I would liken it to taking us (square pegs) chopping off the corners and stuffing us through round holes.

You will need to get a bit clued up on this to self advocate and you are absolutely in the right place. USE their own guidelines against them- there’s latitude in them but they rarely use it.

Look at the pinned post for NICE and NHS guidelines (the useful bits).

Every measure that has been put in place for thyroid dysfunction management has been a financial not a clinical decision. Those of us who don’t happen to fit the crude diagnostic and management model have to self advocate and get ourselves sorted - frequently pushing back on the doctors we might once of trusted and believed in.

SlowDragon profile image
SlowDragonAdministrator

What time was test done on Monday

ALWAYS book all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test

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

Is this how you did the test?

Get hold of test results and add them on here

Make an appointment with GP

List all your hypo symptoms

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

and request 25mcg dose increase in Levo now

Which brand of levothyroxine are you currently taking

Do you always get same brand

Are you currently taking any vitamin supplements

Do you know if your hypothyroidism is autoimmune?

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 antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Only do private testing early Monday or Tuesday morning.

Link about thyroid blood tests

thyroiduk.org/testing/thyro...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Symptoms of hypothyroidism

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

Tips on how to do DIY finger prick test

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

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

guidelines on dose by weight of 1.6mcg per kilo of your weight per day ….suggests you will eventually be on approximately 137mcg per day (125mcg and 150mcg on alternate days)

However we have to increase SLOWLY, usually in 25mcg steps

So up to 100mcg

Wait at least 6-8 weeks…..retest

May need to wait a further 6-8 weeks and retest again

Increase again

Etc etc

McPammy profile image
McPammy

Get your results printed out if you haven’t got Patient Access. If you haven’t patient access then request that also. Then post those results on here for feedback So many people being miss treated by unknowledgable gp’s.

Your TSH should never be above 2. And your T4 never over range. Your T3 should be at least 50% through it range. If your GP doesn’t test t3 then you can get it done through Monitor My Health on line quite cheaply.

It can be a battle to get optimal levels but by golly it’s worth it when you hit your own sweet spot.

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