Can i just stop taking levo thyroxine?

[Ambers]

Hi im new - Can anyone advise me if they have experienced any problems on stopping levo thyroxine. I am 48 and have taken 25mg daily for one year and feel i can’t go on feeling the way i do. My legs do not work at all after resting, i am very very depressed, bloated like a beached whale - in the last year i have gone from a size 10 to a size 18 lost all sex drive and i look 9 months pregnant my bra is no longer a 28d now 32gg and growing and that is even more upsetting as i can’t even have children (started menopause early). In the last week i do not recognise myself as my face is so bloated, i struggle to do the easiest of tasks, recently started to hear ringing in my ears and not making it to the toilet in time as cannot hold it and suffering from ibs. I regularly have shooting pains throughout my body with pins and needles numbness and cannot work - life is unbearable. For the first time 2 days ago i missed my tablet and throughout the day felt a little better so missed todays too and i feel even better - all my face bloat has gone down. I really do not want to take them again but have no idea if there are consequences to this decision. Can anyone help.......?

[ShootingStars]

Hi Ambers. I'm sorry you are feeling so poorly. Which medication? We need to know what your current bloods are: FT3, FT4, TSH, TPOab, TGab. Can you post them?

Yes, depending on your bloods, there are consequences of stopping the medication. Some doctor prescribed that medication based on you being hypothyroid. Unfortunately, they did not start you on the correct starting dose, so you were still hypothyroid. I do not think it's a good idea to just stop this medication even though it was the incorrect dose, until you have current bloods posted here and someone interprets your bloods. It's possible it's the wrong type of medication for you, and you might need a combination of two hormones, or possibly the opposite hormone than what was prescribed.

If this is leveo/T4, 25 mcg is not even the starting dose, so this is likely the problem and why you are feeling so ill and have all those hypo symptoms. If you were on the proper dosage, you will have little or no symptoms. This should take no more than 3-4 months to reach that point, not a year or years.

The starting dose for T4/levo is 50 mcg. 6 weeks after starting meds, FT3, FT4 and TSH are always tested to see how effect the medication was. Symptoms are evaluated. If bloods are not good and you still have symptoms after 6 weeks, medication is increased in 25 mcg increments. Bloods are continued to be retested every 6 weeks. Medication is adjusted as needed until you have little to no symptoms. Once your levels and symptoms are stable, you don't have to keep retesting every 6 weeks. Once stable, most people then retest every 6 weeks, and if that all looks good, they retest on a yearly basis, unless symptoms increase or change.

Did you follow up with your doc 6 weeks after you started meds, or did you wait a few months, or have not followed up? What did they say?

Also, it is very important to test thyroid antibodies to rule out autoimmune thyroid disease is not the cause of your hypothyroidism. These tests are called TPOab and TGab.

[Ambers in reply to ShootingStars]

Hi Shooting Stars thank you so much for your reply and being so informative - my doctor prescribed Levothyroxine sodium with anhydrous 25 mcg April 2017 - he retested my bloods Nov 2017 and told me to continue dosage and return in one years time for blood tests. I will find the results and post them tomorrow. I told him in November about the severe bloating, tiredness, not sleeping, brain fog, not being able to walk after resting, weight gain and the depression - he tested me for all bloods plus chromes, coeliac and arthritis these were negative and he felt we had done all the tests necessary so just continue as I am. I have felt lost ever since. I want to know why I can’t walk properly when I stand up, why I feel so awful all the time and why I have put on five stone in the last year when I am careful with my diet and when my legs get working I walk between 4 and 6 miles per day with my dog (that being the only thing I can manage in a day). I feel it’s the tablet causing my issues - I am exhausted from feeling this way and the only positive feeling I have had in the last year was when I missed taking a tablet. Thank you for your time in replying it means so much I look forward to the comments on my blood results.

[ShootingStars in reply to Ambers]

Hi Ambers. You are very welcome! Your doctor is doing you a huge disservice. He started you on 1/2 the starting dose and didn’t retest you for 8 months? Ignored your symptoms and thinks your bloods are fine. I highly doubt they are based o. Your symptoms. He is missing the boat on so many levels!

Did this doctor test thyroid antibodies TPO and TG, or did he miss the boat on this too? Your symptoms could be from autoimmune thyroid disease. Depending on your TSH, FT3 and FT4 levels, you might also need to test TSI.

It’s possible your FT3 and FT4 are too high, or too low. Or, it’s the wrong type of medication for your blood levels.

Do you have any swelling in your neck? All of your symptoms are in line with hypothyroidism.

You could also have low or high vitamin levels contributing to your symptoms. What is your compete iron status, vitamin D, mma and serum b12, folate and homocysteine? With iron, and will need a complete iron panel to determine your status. If you’re in the U.K., unfortunately it’s the standard to not get proper iron diagnostics and only test one portion of the panel, ferritin. You can have low normal or high ferritin and all your other levels can be toxic or they can be too low. Lowish in range ferritin does not always mean iron is low. Only a complete iron panel can determine that.

What other tests has your doctor done, what are the results and ranges?

[Ambers in reply to ShootingStars]

Hello I have just posted my results as a reply to my question page can you see these or do I need to reply to you directly?

[ShootingStars in reply to Ambers]

Hi Amers. Thank you! I can see them, but we also need the reference range for each test. Otherwise, they are just random numbers because lab ranges are not universal.

[adelew in reply to Ambers]

It might feel as though the tablet is causing the problem, but it's much more likely to be the dosage. I didn't understand this until recently, how you could feel worse on 25 mcg than on nothing at all, but it's now been explained to me here that it's due to levo suppressing the thyroid stimulating hormone, thus suppressing your own natural supply of thyroxin. When the dose of levo is high enough, this effect is counteracted, but when undermedicated all you get is the suppression of your own supply and not enough replacement to compensate.

As others have said, please post all your results as soon as you have them. It sounds like your problem could be as simple as being on too low a dose for too long. Your doctor sounds incompetent simply for the fact he doesn't want to see you for another year. Even if, for whatever strange reason, he's happy that you're still symptomatic on this untherapeutic dose, blood tests should be more regular than once a year if you've only recently been diagnosed.

[diogenes Remembering]

You are on a very unhelpful path here. 25 ug T4 is a completely inadequate starting dose for anyone under about 70 years of age. It can actually make things worse than taking no T4 at all. This is because this can actually inhibit what thyroid action you have, lower conversion of T4 to the active hormone T3 and generally put you in a worse state of health. 50 ug should always be a minimum starting dose for any younger person.

[Ambers]

So sorry for the delay in replying I now have my test results. Firstly I would like to thank you all for kind replies they are such a source of comfort. I have found results for FT4, TSH, Vit D, and Ferritin but I cannot find the others you asked for - I don’t know if they are listed under something different and I don’t really understand what some of them mean - so I have included ones that may help. To reply if I have a lump in my neck - the back of my neck is sore if I hold my head upright in the correct position. Also I don’t know if this is relevant two weeks ago directly below my collar bones in the centre a round area about two inches across raised slightly it did concern me but did not appear as a lump I was going to call to see my doctor this week but two days after not taking levo it has gone down. I have now missed four days of taking 25mcg and have two weeks to wait for an appointment with my doctor and I have no idea if I am being stupid! All I know is that I feel so much better, still not perfect but this morning I could walk as soon as I woke up and all my swelling in my face, stomach and legs have gone down. I still have some pain but not the shooting down my leg kind that stops me in my tracks - I have no idea is this good or bad to stop! Thank you for your time in reading this and all feedback is very much appreciated.

Serum TSH level:

Jan 2018 2.1 mu/L

May 2017 5.5 mu/L

May 2016 1.9 mu/L

Serum free T4 level

May 2017 13.6 pmol/L

Serum Ferritin

Nov 2017 116ug/L

May 2016 81ug/L

Jan 2013 79ug/L

Serum total vit D

Nov 2017 46nmol/L

May 2017 30nmol/L

May 2016 70nmol/L

ACH receptor antibody level 0.31nmol/L Nov 2017

Proteinelectrophoresis Nov 2017

IgG 10.3g/l

IgA 0.7g/l

IgM 0.85g/l

Rheumatoid factor Jan 2018 10.8 iu/ml

[Ambers]

Sorry here are all the normal ranges for the results above.

Serum TSH level 0.35 - 5

Serum free T4 level 9 - 24

Serum ferritin 15 - 250

Serum vit d 75 - 200

ACH receptor 0 - 44

IgG 6 - 16

IgA 0.8 - 4

IgM 0.5 - 2

Rheumatoid factor 0 - 15

I hope this helps.....