What do I do now?: Ok, the endocrinologist wrote... - Thyroid UK

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What do I do now?

Messyrooms profile image
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Ok, the endocrinologist wrote to my GP saying that, despite my symptoms and an existing autoimmune condition, my TSH of 3.9 was normal and perhaps a T4 and repeat TSH could be done if it was felt necessary and if either of these fell outside the set boundaries then he would gladly see me but his opinion is that I am classically euthyroid (normal). The bloods had been done but the labs refused to test them and the GP didn't push.

My symptoms are.... low pulse (45-60), shortness of breath, hair loss, swelling of ankles, hands and sometimes face, depression, difficulty losing weight, easy to gain weight, palpitations on and off, pain in feet, legs and lower back, extreme fatigue, ability to sleep for hours and hours and still feel exhausted, no interest in anything, dry eyes, difficulty focusing despite 20/20 vision when tested, hearing loss, loss of libido, acne and dry skin.

Am I a hypochondriac? Am I imagining these symptoms? I'm starting to think that I'm going mad.

I've started taking a multivitamin containing iodine and all the B vitamins but have decided to start taking NDT, am I making the right choice and is it safe? I'm sick with worry.

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Messyrooms
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6 Replies
bobsmydog profile image
bobsmydog

It's what I did. I was told I was now normal according to blood tests after being put on Levothyroxin but my hypo symptoms had actually got worse.

I had no energy to fight so just went out and bought myself some NDT. Pleased I did - getting slowly better and I'm in control of my own dosing, with the help from this wonderful support group!

Clutter profile image
Clutter

Messyrooms, I think self-medicating is a better choice than waiting until your bloods are abnormal enough for NHS to make a diagnosis, by which time your symptoms will be worse and will take longer to resolve.

Start with half a grain (30mg) for two weeks and then raise in half grain increments every 2 weeks. Hold at 2 grains for 4-6 weeks and have a blood test before increasing further.

thyrophoenix.com/adjusting_...

thyroiduk.org.uk/tuk/testin...

Yes it is safe, unlike the risks the nhs is taking with your health.

Many here have never looked back after taking control. I believe i have lasting damage cause by nhs negligence, namely keeping me undermedicated for around 6 years.

I now take ndt which I buy online (since end 2012). I determine my own dose based on symptoms. I get my own blood tests as and when i can afford to do so.

My only regret is - why did i wait to long and why did i trust that corrupt, revenue-hungry, misogynist little bunch of establishment drones with my precious health - you never get back the years you lost.

mrsm49 profile image
mrsm49

Hi messyrooms, your symptoms sound like how I was for first couple months after thyroidectomy. Even then they denied that some of the symptoms were related to my TT (eg my worsening vision ,shortness of breath and joint pains) Strangely, or maybe not so strange, as my thyroxine dose increases my symptoms are improving although not gone yet. I hope you can make them see sense and help you.

mrsm49 profile image
mrsm49

PS you're not going mad, or if you are....join the gang ;-)

penny profile image
penny

No, you never get the years back - 25 years of being unwell and not diagnosed.

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