Underactive thyroid

[dairyfairy21]

Newly diagnosed after feeling ill for months. I just thought I was lazy and unfit - every symptom crept up slowly until I had spaghetti arms and concrete strapped to my legs.

I'm now in bed most hours of the day and can't really leave the house due to muscle pain.

I got private bloods & had a private doctors appointment as usual GP was a 3 week wait and I didn't want to "fight" for an emergency as I didn't think it was -

So I've been started on 50mgs of levothyroxine. Day 3, no change. Attached are the blood results.

Anyone else been in a similar level and on same mgs of levothyroxine?

I don't want to sound like a hypercondriac but the only way I can describe how I feel is, I feel like I'm slowly dying.

My husband keeps reminding me that the doctor would have done more if I really was dying. So with that, I just turn to here to find anyone else going through it

It'll take a while
My TSH was just under 8 and it took until 100mcg to get it to come down to about 1.2

Are you taking it as advised: first thing in the morning, at least half an hour before breakfast/tea/coffee?

It will take a at least two weeks for you to start to feel better and maybe a few months to get the medication level right.

By the time I was eventually started on 50mg of thyroxine there was no activity at all in my thyroid. This was because of a GP error where my blood test results, several months earlier, showed I had an underactive thyroid, but the results had been ‘misfiled’, so I was never given any treatment, just told my blood tests were ‘normal’. I couldn’t even brush my hair because I couldn’t lift my arms up!
I started treatment but had two months off work (although the very helpful Dr did say ‘you can work with a underactive thyroid you know’ 🙄) because I couldn’t get up, but I did recover.

Dont ever take it with iron or vitamins containing iron, it affects absorption. It is worth noting however that low iron, low B12 & Vitamin D deficiency are common in hypothyroid patients so it would be worth supplementing a couple of hours after thyroxine.
Always take it in an empty stomach and at least 30 mins before coffee.

I hope you soon start to feel better

@buffyslayer @MarthaDunstable @ToBeOrNotToBee @ToBeOrNotToBee @DoubleDarkMode

Thank you so much for your replies.

@buffyslayer thanks for letting me know what mgs your on. My doctor said to wait 8 weeks for another lot of tests before upping my dose, but I just FEEL 50mgs is just not enough.

@MarthaDunstable I am waking up at 5:30am and taking the Levo. Then I get up at 7, have coffee & porridge and then my round of vitamins because I was also told I was anaemic, I take Iron, Vitamin C, Folic Acid & B12

@DoubleDarkMode I am so shocked to read about your arms. Mine are exactly the same - they have been like this for more than a year, I just thought I was "weak". But all of a sudden it has spread to my legs and my arms are way worse. I can't lift my arms and not being able to play with my toddler has left me a depressed mess. Please can you tell me how you are progressing? Do you have your arms back??

@DoubleDarkMode

Sorry, I did see that you are recovered.

Do you find you go up and down? Or are you quite stable now?

It can be dangerous to be on too high a dose as you can swing the other way so your levels have to be balanced carefully. It does take a while to work but you'll have a blood test after a while and if your levels still aren't right you'll be upped gradually again until dosage is right. It is frustrating but once you're on the right dosage you'll feel back to normal again

I think I started at 25 and moved up gradually to 100, and that took a good few months but now I have absolutely no issues at all.

@Daisy03

Thank you so much.
I'm a very active person, I'm out with my dog 4 hours a day and the rest running around with a toddler.

I'm now just crying in bed all the time because my body won't work!

Also, holding on to weight!! My lovely Levi's no longer fit. 😭😭

So frustrating. Thanks for your comments -

They started me on 25 and moved me to 50, then refused to up it any more
My consultant in haematology rang my GP and asked if they were trying to treat me via homeopathy
It got increased to 75, TSH was about 4 and they said that was "fine" and told me I would have a heart attack if it was lower

I moved doctors
New doctor tutted and upped it to 100