Help deciphering side effects of levothyroxine - what to do next?

Hi, Katie. I am surprised that your Doc put you on such high a dose to start. Usually, you will be started on a dose of 25mcg, at the most 50mcg, as thyroxine is such a strong and potentially (in the wrong hands/dosage) dangerous medication. You are then supposed to be monitored and increases done gradually and gently as your body becomes accustomed/more in need. Might I suggest that you take

the 'normal' starter dose of 25mcg, and see how you go.

Do you know your test results? If not, may I also suggest you get these from your doc for your own records. Unfortunately, as a lag on from the old days a lot of docs don't like to give you these, on the premise of Dr knows best, and anyway patients are idiots, but you are entitled to know them. Sometimes a doc will print these off there and then, but some docs are ratbags and will charge you. (To discourage the practice.) However, if you keep a small journal of your symptoms/treatments/appointments/info given, you could just ask for them and jot them down in it. The usual tests that are done here in UK are TSH, (thyroid secreting hormone), and T4, and so these are the minimum results you want to ask for.

Your symptoms do sound like you are overmedicated at the moment, so I do suggest you go back to the doc to get this tweaked down further again. If your doc won't listen, it may be worth seeing a different doc.

Let us know how you get on. X

Pippa, thank you for your suggestions, I really appreciate it and it is so nice to get some feedback!

Another friend of mine who is on Levothyroxine was also concerned about my starting dose as she started on 25mcg and worked up from there.

I will try to get my test results from my doctor when I talk to him next, hopefully tomorrow. As I am not very fond of my current doc, if he wont lower my dose I think I will try for a second opinion.

Is there any harm in stopping the medication if I am between doc's? Also, should I be overly concerned about the chest pain, although at the time it is mild?

I also agree completely with what Pippa has said and recommended. I also started on 25mcg and worked my way up gradually. It really does sound as if you are being over medicated!

Hope you feel more comfortable soon.

The practice nurse put me on 25mg to start with and upped it quickly to 100mg so I started having pains and palpitations . I went to see another doc in the practice and he was very angry that she had put me on it in the first place.

I am now coming down form 200mg and am on 125 at the moment. Every time I go to the docs for blood work to show how this is getting on she tests my liver too. Is it right that Levothyroxine causes liver damage and increases the risk of liver cancer?

I don;t want to alarm anyone but I need to know before I see my doctor next week.

Hi again Katie. I shouldn't stop the meds completely, as you will only have to start the whole process again anyway, but bring it down to as close as 25-30 mcg as you can until you have spoken to your doc, and got onto a good relationship footing with him/her. Underdosing, will still make you feel ill, but is far less dangerous than OVERdosing.

May I suggest that you look on the Thyroid UK org website, to get more info on 'acceptable' UK testing levels and other details. The better educated that you are, the better position you are in to get appropriate treatment from your Doc, (which is an appalling lottery all over the world, let alone here, because of the lack of investment in research of endocrinological disorders.)

Again please let us all know how you get on, we all need to help each other. xx

Pippa, thank you. I am currently feeling SO anxious and shaky I just feel like I can't stand to keep taking the medication I have an appt to get a referral to see a different doc, hopefully soon. I got a copy of my labs today and wanted to share my numbers: T4, free= 1.2, TSH= 3.76, Thyroid Autoantibodies Thyroglobin= 627, and Thyroid Peroxidase= 160..

I will continue to update on here as I go along! Thank you so much for all your help!!

Also, I am going to take a look at that website, I live in The United States but I am interested to see what the acceptable UK testing levels are as well (I did not realize this was a UK site until you mentioned it, I hope it is okay I am on here!). My mother, who has Hashimoto's suggested the site hashimotos411.com, so I wanted to share that as well.

I don't know if there is a difference between Hypothyroidism and Hashimoto's? I am going to do some research now!

Hi Katie,

Yes it is fine to be on here, these forums are open to anyone. There is an article on our site about Hashimoto's here https://patient.info/doctor/hashimotos-thyroiditis but this is an article for doctors so may be technical in some areas. There is a link to a patient leaflet on hypothyroidism at the bottom of the article going here https://patient.info/health/hypothyroidism-underactive-thyroid-leaflet

Regards,

Alan

Emis Moderator

European doctors assess to a much lower TSH than the UK or USA. Do not let your doctor frighten you, there are side effects to any medication and it is the case that you NEED thyroxine, you don't take it for a bet!! Please do not waste your time trying to find information on either the BTA or BTF websites, there is very little of any sense on either. They are a support for doctors not any use to patients.