In the autumn of last year I found lump on neck, had biopsy not cancerous, consultant recommended removing it with a thyroidectomy op I agreed. At pre med found I have AF op cancelled. Months later op on again but cancelled after anaesthetist were unable to fit cannula and heart rate went through roof. It was then decided to monitor size of lump every 6 months t see if it’s grown rather than go through another charade.
My AF is now being controlled with tabs and has been for some time, yet recently I have become extremely breathless. Heart consultant told me he doubts it’s the AF after a 24 hour ecg average of 73 bpm. Whilst he has booked me in for a couple of procedures to compare my heart with those taken when first came in with A F. He seems to feel it may be due thyroid.
He finds it strange I Have only ever been on 25 micro grams Levothyroxine for last three years and it could be this which is the causation of my tiredness and breathlessness. Sorry about going on but any advice or personal experience would be appreciated.
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Mickhall
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Thanks for replying I have been on this drug for almost two years and as far as GP is concerned I have never had blood test for this. I have had pre op blood tests but fool that I am not sure what they were for. 1 have new GP seeing her tomorrow what questions do you think I should ask.
Whoever started you on Levo should have followed protocol, which is to retest 6 weeks after starting, increase of 25mcg if necessary, and keep repeating testing/increasing every 6 weeks until levels are where they need to be for you to feel well.
Once levels are stable, retesting once a year is normal for thyroid function tests.
As an absolute minimum you need to ask for TSH and FT4 but really you need all the tests that SlowDragon has listed.
For full Thyroid evaluation you need TSH, FT4, FT3 plus TPO and TG thyroid antibodies and also very important to test vitamin D, folate, ferritin and B12
Low vitamin levels are EXTREMELY common, especially if been under medicated for thyroid
Standard starter dose is 50mcg. Obviously your GP being cautious perhaps due to AF
Low vitamin D and low magnesium are common when hypothyroid, magnesium has significant affect on heart
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.
All thyroid tests should ideally be done as early as possible in morning and fasting. When on Levothyroxine, take last dose 24 hours prior to test, and take next dose straight after test. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)
Always take Levo on empty stomach and then nothing apart from water for at least an hour after. Many take early morning, on waking, but it may be more convenient and possibly more effective taken at bedtime.
Other medication at least 2 hours away, some like iron, calcium, vitamin D or magnesium at least four hours away from Levothyroxine
Many people find Levothyroxine brands are not interchangeable.
Once you find a brand that suits you, best to make sure to only get that one at each prescription. Watch out for brand change when dose is increased or at repeat prescription.
Many patients do NOT get on well with Teva brand of Levothyroxine. Though it is the only one for lactose intolerant patients
Ask for full Thyroid testing including thyroid antibodies and FreeT3
Levothyroxine is the storage hormone called T4 for short, this is inert and must be converted in the body into FT3
It's important to test Free T3 as the heart can not convert FT4 to FT3. It needs good levels of FT3
If significantly under medicated (as you may be) on Levothyroxine FT3 may be far too low
Any dose of Levothyroxine, even one that is far too low, will reduce TSH (Thyroid stimulating hormone) the message sent from the pituitary to tell Thyroid to work
So a very low dose of Levothyroxine is enough to turn your own thyroid production down, but doesn't offer anywhere near enough replacement Thyroid hormones
Ask for full iron panel including ferritin as you understand some symptoms could be due to Anaemia due to being under medicated on Levothyroxine
Vitamin D, folate and B12 need testing too as these are common to be low when hypothyroid
As SeasideSusie says, you should have had blood tests 6-8 weeks after starting on 25mcg Levothyroxine
Standard starter dose is 50mcgs, unless over 50 years old, or with heart issues. But dose still needs increasing, it's just starting is more cautious
Dose is increased slowly in 25mcg steps until TSH is around one and FT4 towards top of range and FT3 at least half way in range
Just testing TSH and FT4 is completely inadequate, as low vitamins tend to make TSH low.
NICE guidelines saying how to initiate and increase.
Note that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine
If GP is unhelpful or clueless about thyroid (sadly extremely common) private testing is available
For full Thyroid evaluation you need TSH, FT4, FT3 plus TPO and TG thyroid antibodies and also very important to test vitamin D, folate, ferritin and B12
Thousands on here forced to test privately as NHS often refuses to test FT3 or antibodies or vitamins
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.
All thyroid tests should ideally be done as early as possible in morning and fasting. When on Levothyroxine, take last dose 24 hours prior to test, and take next dose straight after test. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)
In my experience, Cardiologists can sometimes have a far better grasp of thyroid disorders and how they, and treatment for them, might or might not impact on the heart, than GPs and Endocrinologists. I concur that being held on only 25 mcg levo for 3 years may very possibly be the source of some if not all of your symptoms. My own fatigue and breathlessness at the time, were ameliorated by adding T3 to my T4. Regarding your GP appt, you could refer her to the NICE Clinical Knowledge Summary for Hypothyroidism which requires her to:
-Review the person every 3–4 weeks after initiation of LT4 and adjust the dose according to clinical and biochemical parameters, aiming to:
-Resolve the symptoms and signs of hypothyroidism.
-Normalize serum TSH and improve thyroid hormone concentrations to the euthyroid state.
-Avoid overtreatment, especially in the elderly.
-Once a stable TSH is achieved, TSH can be checked 4–6 monthly and then annually.
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Hypothyroidism and Breathlessness occasional nausea
BREATHLESSNESS
Completely lost
My little moan about so called "specialists"
