over medicated and breathless: hi, 25 years ago I... - Thyroid UK

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over medicated and breathless

Leonsmum profile image
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hi, 25 years ago I was diagnosed with Graves’ disease, can’t remember results but I was severely underweight,terrible tremors, sweating, resting heart rate was around 140 and had little to no voice. At the time my personal circumstances meant I couldn’t have the recommended surgery or radioactive iodine so I chose to have carbimazole and beta blockers. Eventually it settled down and I didn’t need treatment but it came back a couple of times needing more carbimazole.

Fast forward a few years and I started gaining weight, got tired, very low BP, depressed, swollen ankle, brittle nails, bloating. Doctors ran blood work and said I had underactive thyroid (Hashimoto’s) and started me on Levothyroxine and did tests every 12 weeks or so and kept changing dosage. TSH at each test was anywhere between 10.92 and 59.58 - eventually it was under 1 and I felt well - endocrinologist recommended it was to be kept under 1 but range was 0.1-5.0 - my T4 tended to vary within normal ranges between 12 and 23(sometimes a little higher) whatever the TSH was.

Earlier this year in February- I was taking 150mg, TSH was 0.01 (range 0.1 - 5.0) with serum free T4 at 28 (range 12.0-23) so GP lowered dose to 125mg.

A week ago my TSH is still 0.01 and the serum free T4 has gone up to 33. They have lowered dose by 50mg this time to 75mg, which feels like a big drop in one go? My BP is up and down, heart rate is slow then fast, am feeling very breathless, getting chest pain like indigestion, leg cramps/joint aches, having hair loss, periods are fluctuating all over the place. Can go 2/6/ or 7 weeks between, sometimes very heavy and painful - sometimes ok, got hangover type headache pretty much all the time at the mo. One good thing is I tend to really suffer with feeling cold and get painfully cold hands even indoors, often needing to hold hot water bottle but most of the time am feeling warm now. Any advice as am fed up of it, I have a new job which is quite stressful and really don’t need this on top of everything :( thanks if you have read this far and can offer any useful advice xx ps I have just turned 50.

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Leonsmum
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Buddy195 profile image
Buddy195Administrator

Have you had FT3 tested Leonsmum? It would be useful for a fuller picture of your thyroid health.

I am very sensitive to changes in dose (either increases or decreases) and certainly would be ill if reducing Levo in one go. I’ve ended up in A and E with palpitations, fast pulse etc when I’ve done this. I would absolutely do this more gradually. Whilst some members are fine reducing by 25mcg, I need to use a pill cutter and reduce by 12.5mcg (initially on alternate days/ building up to daily) before reducing further. Some of us are more like a tortoise than a hare.

Whilst some members report requiring more thyroid medication during peri menopause, others (like myself) have needed less. I wonder if this may be a factor why you are requiring less Levothyroxine thyroid too? It may be useful to have a look at Dr Louise Newson’s free Balance App, as I find it really useful for having up to date research articles on peri menopause/ menopause. There is also an ability to post questions.

healthunlocked.com/redirect... 

pennyannie profile image
pennyannie

Hello Leonsmum and welcome to the forum :

Graves is an auto immune disease that generally is only discovered when it attacks your thyroid and most likely times for this AI disease to be medically diagnosed is at puberty, childbirth and menopause and is suffered mainly by women.

There is no cure for Graves Disease and the treatment options are still the same as you ' swerved ' - as mainstream medical see Graves as life threatening and medicate with AT drugs for around 15-18 months and longer term suggest patients should have RAI thyroid ablation or a thyroidectomy.

Interestingly however is that the most recent research is suggesting the longer the patient stays on an AT drug - like Carbimazole - the better the option is for the patient :

pubmed.ncbi.nlm.nih.gov/338...

There is no cure for Graves Disease and depending on the severity of the symptoms suffered it can burn itself out with the patient finding themselves becoming progressively more hypothyroid and being prescribed T4 - Levothyroxine.

Graves is a poorly understood AI disease, said to be driven by stress and anxiety, and there is likely a genetic predisposition with someone, maybe a generation away from you, with a thyroid health issue, and generally only becomes medically acknowledged at puberty, childbirth and menopause.

So, it would seem that you have worked your own way through Graves and now dealing with hypothyroidism and taking T4 - thyroid hormone replacement and now with Hashimoto's - another AI disease for which there no cure and the end result is hypothyroidism as your thyroid becomes fully disabled.

It is essential that you are dosed and monitored on your Free T3 and Free T4 blood test results and not a TSH and T4:

T4 - Levothyroxine is a storage hormone and needs to be converted by your body into T3 the active hormone that runs all your body's functions, from your physical, mental, emotional, psychological and spiritual well being, to your inner central heating system and your metabolism.

Your ability to convert T4 into T3 can be compromised by non - optimal levels of ferritin, folate, B12 and vitamin D, plus inflammation, physiological stress (emotional or physical) depression, dieting and ageing so in the first instance we need to see a full thyroid blood panel to include the above to be better able to understand your current health issue and what you can do to get back to get back on track.

If your doctor is unable to run the full thyroid blood tests there are companies listed on the Thyroid UK website - thyroiduk.org who can and it's generally referred to as a thyroid 'ultra' or thyroid 'bundle' and around 10 blood analysis but just one blood draw.

Make an early as possible morning appointment for the blood draw, fast overnight, just taking in water, and do not take your T4 for that day until after you have had the blood draw and if taking any supplements leave them off for around a week, so we can see exactly what your body is holding on to.

When with the results start a new post with the results and ranges and you will be given considered opinion as to your next best steps back to better health.

I'm with Graves but post RAI thyroid ablation in 2005 becoming very unwell around 8 years later and originally treated with T4 - I still have Graves, as it's for life, but since I now don't have a thyroid, the symptoms are not considered life threatening, and not understood and I now self medicate with full spectrum thyroid hormone replacement and why I come back on here to help others as I was helped on here myself, some years ago.

You might like to read around Graves Disease - I think the Elaine Moore Graves Disease Foundation website the most well rounded of all the websites I dipped into - just wish the information was readily available when I was diagnosed back in 2004.

Do you have there your original paperwork of when first diagnosed Graves which details a TSH. T3 and T4 reading and more importantly which antibodies were found over range and positive at diagnosis and the medical evidence and why you were treated with an Anti Thyroid drug like Carbimazole.

Graves and Hashimoto's originally present in the same way and the only way to tell them apart is through which antibodies found in the blood stream at diagnosis :

Graves is treated with an AT drug - Hashimoto's is not treated this way :

elaine-moore.com - for Graves :

thyroidpharmacist.com - for Hashimoto's :

ncbi.nlm.nih.gov/pubmed/306... - just for reference as to a treatment option you swerved :

SlowDragon profile image
SlowDragonAdministrator

You need vitamin D, folate, B12 and full iron panel test for anaemia including ferritin

Low iron/ferritin very common after reducing dose levothyroxine…..hairloss and breathlessness common symptoms of low iron

Heavy periods are also common with anaemia

Low vitamin levels tend to lower TSH

Essential to test TSH, Ft4 and Ft3 together

Always test thyroid levels early morning, ideally around 9am and last dose levothyroxine 24 hours before test

Do you always get same brand levothyroxine at each prescription

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