So I’m in a bit of a pickle atm seeing an nhs consultant he says he won’t prescribe the t3 on the nhs that all my bloods are in range .
I have been feeling so porly lately Iv not been able to get out of bed properly .
Iv been having a lot of cardiac issues so I’m seeing the cardiologist with what I feel like is arrhythmia on Thursday last week we went to Lincoln when k climbed the hill my heart was going crazy until I couldn’t move I www rushed to hospital with what felt like a heart attack .
Iv not been able to walk my dogs even do dinner some days .
I was told my thyroid levels were raised I said they can’t be Iv been told they are all perfectly fine. She argued not and that possibly why my hearts done what it has today
I’m so confused frustrated they deny anything k say that’s wrong .
every night I’m havjng episodes where I go unconscious in my sleep and my adrenaline is the only thing that’s bumping my heart bk into action .
cardiologist says it could be thyroid , endocrinologist says it has nothing to do with it as my levels are all fine
what the hell do do now .
These were my levels in sep
the a and e doctor said my level of ths were upto 5.8 .
Which is to high .
anyone any good at reading this stuff
Nicola
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Nejy42
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Your heart needs plenty of thyroid hormones to beat steadily
TSH frequently be around or below one when adequately treated
Most important results are always Ft4 (levothyroxine dose) and Ft3 (active hormone)
And important to test and maintain GOOD vitamin levels for good conversion of Ft4 to Ft3
Low vitamin levels very common when on inadequate dose of levothyroxine
Guidelines of dose Levo by weight
Even if we frequently start on only 50mcg, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or somewhere near full replacement dose (typically 1.6mcg levothyroxine per kilo of your weight per day)
Adults usually start with a dose between 50 micrograms and 100 micrograms taken once a day. This may be increased gradually over a few weeks to between 100 micrograms and 200 micrograms taken once a day.
Some people need a bit less than guidelines, some a bit more
TSH should be under 2 as an absolute maximum when on levothyroxine
If symptoms of hypothyroidism persist despite normalisation of TSH, the dose of levothyroxine can be titrated further to place the TSH in the lower part of the reference range or even slightly below (i.e., TSH: 0.1–2.0 mU/L), but avoiding TSH < 0.1 mU/L. Use of alternate day dosing of different levothyroxine strengths may be needed to achieve this (e.g., 100 mcg for 4 days; 125 mcg for 3 days weekly).
How long does it take for this new long of tablets to make me feel better ? I have had the worst day again today Iv been on them over a week now or does it take longer ?
That’s ok then as atm I feel like I could keel over and die . My hearts struggling , fatigue if I push against it i physically want to collapse I go dizzy my legs to numb and I get severely out of breath Iv slept all day today I feel absolutely awful
Not her what brand they r in my room and I’m downstairs atm . I’m on the lavothyroxine
Iv been signed off work and now have lost my job as I was in probation and Iv been kff work to long to much I just never have any energy and now I literally can’t even stand to cook dinner .Or walk clean .
After I collapsed walking up the hill I have felt awful .
Somedays I’m sat there thinking should I be writing my will
Nejy42 Apologies for what may sound like a set of random questions:
What is your blood pressure typically?
Have you had your sodium and potassium levels checked?
Has your cortisol level been checked (wants to be an 8-9am blood test)?
Do you have any unusual skin pigmentation?
Do you have loss of underarm & pubic hair, and loss of libido?
As others have said, you might want to increase your levothyroxine, and low vitamin levels would want addressing, but a number of bits that you have mentioned make me wonder about the questions above as well.
my blood pressure typically ranges 116 and under / 60 for for example its always more on the lower sides iv never had it over 120 sometimes its 100 or less.
im not sure on sodium and potassium levels
iv had loss of hair on head i don't really have armpit hair i do loss of libdo.
no check of cortisol either.
but my heart rate during sleep is up and down like a yoyo
Nejy42 Have you been taking using any steroid-based meds (inhalers, nasal sprays, tablets, ointments, etc)?
TBH, regardless of the answer to that, if you are not feeling better once you have increased your levo and supplemented any low vitamins (or sooner depending on quite how poorly you are feeling), I would be tempted to ask for (or order privately) an early morning cortisol blood test. Certainly not as definitive a suggestion as I have made to a few other people recently, but a number of things you have mentioned make me think it could be worthwhile, if only to rule out an adrenal problem.
[Edit: Just seen in another post that you have recently come off HRT. That strengthens the suggestion to get an early morning cortisol blood test done, as does your reaction to being stung]
Nejy42 Coming off HRT can result in your cortisol level dropping if your HPA axis is suppressed or your adrenals are not functioning properly for another reason. Cortisol is one of the "stress hormones", and anything that causes the body stress (whether through illness/infection, workplace stress etc., injections at the dentist, or a shock such as a road accident or being stung) will cause the body to draw on what cortisol it has and demand that the adrenals produce more. If the system cannot produce the amount of cortisol that the body needs then feeling bad is the result.
I am not saying that this is what is happening to you, but a number of things that you have mentioned suggest it is possible. It is easily tested with an early morning (8-9am) cortisol blood test.
Nejy42 Your GP can organise that one. Alternatively, companies such as MediChecks do them.
Before doing it, check on the requirements for stopping steroid-based meds (certainly none in the morning prior to the blood draw, but some will say to avoid any the afternoon before if safe to do so), HRT (ideally off it for 6 weeks normally), and oral contraceptives.
Just to say many of us have been where you are now, and following excellent advice on here, have regained our health. Make an appointment with your GP (say you will go to A+E if they refuse, they get told off for this!), tell him you would "like a trial" of more levo to see if this helps your heart. Tell him you know your thyroid hormones drive everything in the body (true) so would he please help you?
Good luck - when you are on the correct dose for you, you will feel better, but the fight with the NHS to get there is steep!
I am no expert, but felt that I could at least sympathise with you as I am in a similar predicament. You must be so stressed and I am sorry that you are having to go through this. At 41 you are in your prime and should be enjoying life - and getting better treatment from the medical profession.My (terrifying) arrhythmias started out of the blue and still continue and like you have times in the night where my heart jerks me awake. When my arrhythmias began my TSH was 5.3 and my T4 22. Both wrong - one underactive and one overactive. Cardiologist says need to see an endocrinologist, endocrinologist says need to increase levothyroxine. Madness. My T3 doesn't vary : on three tests 3.1, 3.3 and 3.2. I have asked for T3 - refused. GP says only test that matters is TSH.
Do any medical professionals ever read Journal articles?
I am now seeing a private endocrinologist, also not helpful just prescribed beta blockers and told me to increase levo from 125mcg to 150mcg.
I am considering buying T3 from abroad but cannot be sure about where, and who, I should buy them from.
I do hope that you get some help soon, as living with this is sheer hell. My thoughts are with you.
You know your hypothyroidism is autoimmune as confirmed by high thyroid antibodies
What vitamin supplements are you taking
ESSENTIAL to test vitamin D, folate, ferritin and B12 at least once a year
ALWAYS test thyroid levels 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 do your tests
Do you always get same brand levothyroxine at each prescribed
Are you taking Levo on empty stomach and then nothing apart from water for at least an hour after
No medication or vitamin supplements within 2 hours
Some not within 4 hours, eg iron, calcium, magnesium, vitamin D, HRT or PPI
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test
If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal
As your hypothyroidism is autoimmune are you on strictly gluten free diet and/or dairy free diet
If not get coeliac blood test BEFORE trialing gluten free
Always take on an empty stomach litelrsy as I get out of bed with water .
I’ll dress and shower take dogs out before I touch anything else to eat or drink
I take vd 3 with k2 , and b12
I wondered about taking iron supplements .
Does perio menopause complicate things do you think as I’m in that stage of my life Iv come of hrt .
This all seemed to go belly up when I was stung and had a anopholaxoc shock .
I do still eat gluten and dairy
No one has ever told me I shouldn’t
Is it bad ?
How long does it take for this new long of tablets to make me feel better ? I have had the worst day again today Iv been on them over a week now or does it take longer ?
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A little advice needed ☺️
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