Today's appointment: Saw Endo for first check... - Thyroid UK

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Today's appointment

debbymcc60 profile image
7 Replies

Saw Endo for first check since Thyroidectomy on March 1st. Taking 100 mcg Levothyroxine since GP test last week when TSH was 0..02. Previously 150 then 125, since March.

My questions were.

Is TSH alone, adiquuite, answer yes completely.

Is there any connection between Thyroid and Adrenal function, answer, no none whatsoever

He said if I continue to have symptoms once my TSH is around 1, then they will be psychological. He said I looked exhausted. I am exhausted

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debbymcc60 profile image
debbymcc60
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greygoose profile image
greygoose

Oh dear oh dear oh dear! What do they learn in med school these days?!? He is obviously a diabetes specialist with very skimpy knowledge of thyroid. Don't think I'd want to see him again, if it were me!

debbymcc60 profile image
debbymcc60 in reply togreygoose

What on earth should I do? Iv been under this persons care for years of Graves.

greygoose profile image
greygoose in reply todebbymcc60

For some reason, doctors tend to give better care for hyper, than for hypo. They seem to find it more believable. Nobody ever suggests that someone with Grave's is imagining their problems! He quite obviously knows nothing about hypothyroid.

So, what can you do? Three choices, really : a) find a new endo b) self-treat c) continue to suffer with this one who will keep you sick, and probably send you off to a psy!

debbymcc60 profile image
debbymcc60

Somehow I need to get the money for a proper set of blood tests. I bought NDT before my op, but can't self treat based just on a TSH test. Only getting ESA benefits now and debt accumulating,

serenfach profile image
serenfach

Go back to your GP and explain what has happened and give him/her a chance to sort it. Ask to see a different Endo, and ask for a full range of bloods to be done. Explain that you would like to live a full and busy life but you are just too tired. Emphasis that you are a happy soul (so they dont just think "depression") but would like to be more social but just feel too tired.

You can self treat as long as you have a base point, by just taking any increase or decrease very slowly and monitoring the results, but it is not easy. Why do they make things so difficult when you are feeling rotten?

Good luck and hope you feel better soon.

debbymcc60 profile image
debbymcc60 in reply toserenfach

Thank you serenfach . After losing my daughter in September, my Graves was really bad, thus Thyroidectomy in March. All my symptoms felt hyper. Hot, shaky pounding palpitations, and waking up almost as soon as I fell asleep, with flashbacks to her death. I have been waiting for bereavement counselling since September. After my operation, I'm not shaking, heart isn't pounding but still fast. Sleep situation is exactly the same, I wake are up so agitated and find it impossible to relax, to even lie in bed awake. This is what led my GP to reduce my Levothyroxine to 100mcg. I wasn't at all convinced that I was over medicated and feel like it's an adrenal issue. Endo however says, dose is correct, and no adrenal connection.

serenfach profile image
serenfach

I am so sorry to hear about your daughter. Life is really putting you through the wringer!

I had a huge adrenalin issue when I lost a kidney and they took the adrenal gland out (without permission!). My other adrenal gland used to kick off for no reason leaving me shaking, furious for no reason, and ready to hit out at anything. I found the only answer for me was to walk. I am lucky, I live in the middle of nowhere, so I could just get out of bed and walk round and round the house for an hour until I felt calm. I wore a path round the house! Unfortunately hoovering or dusting just did not do the trick - only walking, and walking fast.

I dont know if this would work for you, but it is free!

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