Confused

[Nejy42]

hello

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

[SlowDragon Administrator]

Looking at your previous post you are diagnosed as having Hashimoto’s and are on levothyroxine

Is that correct

How much levothyroxine are you taking

How much do you weigh in kilo

Was this test done early morning, ideally before 9am, only drinking water between waking and test and last dose Levo 24 hours before test

Do you always get same brand Levo

Endocrinologist probably a diabetic specialist

Your results suggest you are on inadequate dose

Free T4 (fT4) 12.4 pmol/L (9.1 - 17.6) 

Ft4 only 38.8% through range

Free T3 (fT3) 3.6 pmol/L (2.4 - 6) 

Ft3 similar at 33.3% through range

See GP and request 25mcg dose increase in Levo

Initially you probably want to only increase by 12.5mcg per day (cut 25mcg tablets in half)

Retest 8-10 weeks later

Then increase again……assuming results are still low

Most people when adequately treated on JUST levothyroxine will need Ft4 (Levo) at least 60-70% through range

That’s typically approximately 1.6mcg per kilo of your weight per day

ESSENTIAL to maintain GOOD vitamin levels

When were vitamin D, folate, ferritin and B12 last tested

Please add most recent results and ranges

What vitamin supplements are you taking

As you have Hashimoto’s are you on strictly gluten free diet and/or dairy free diet

[Nejy42 in reply to SlowDragon]

hello thanks for you reply

So I’m 5ft 5 inch

I weigh 11. St

The tests I did that morning I think didn’t take my pills but I had breakfast

The an and e doc has requested a 25 mg increase in dose

I was taking one day 50 the next 75

Now I’ll be ok 75 everyday

Could this be my heart issues too .

I struggle with not eating gluten and dairy as I’m not a big fibre eater I need to get better at this and make better choices. .

I take vd but no b12

[SlowDragon Administrator in reply to Nejy42]

So 11st = 70kg

70kg x 1.6mcg suggests your eventual dose likely to be 112.5mcg per day

So currently probably very under medicated

Retest 6-8 weeks after being on 75mcg daily

Then push for next increase to 75mcg and 100mcg on alternate days

Retest again in another 8 weeks

Meanwhile get vitamin levels tested

How much vitamin D are you taking

[SlowDragon Administrator]

At the moment you need dose increase in levothyroxine and to get vitamin levels tested

You don’t need T3

Retest thyroid 2-3 months after getting on increased dose

[Nejy42 in reply to SlowDragon]

Thanks so much for your advice . Fingers crossed I’ll feel better.

It’s taken me to nearly have a heart attack for someone to find this issue .

So the a and e doc she said my ths was 5.8 is that high that was last Thursday

[SlowDragon Administrator in reply to Nejy42]

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)

cks.nice.org.uk/topics/hypo...

bnf.nice.org.uk/drugs/levot...

nhs.uk/medicines/levothyrox...

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

gponline.com/endocrinology-...

Graph showing median TSH in healthy population is 1-1.5

web.archive.org/web/2004060...

Comprehensive list of references for needing LOW TSH on levothyroxine

healthunlocked.com/thyroidu....

onlinelibrary.wiley.com/doi...

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).

sciencedirect.com/science/a...

The optimal daily dose in overt hypothyroidism is 1·5–1·8 μg per kg of bodyweight, rounded to the nearest 25 μg

[serenfach]

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!

[Jokokokl]

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.