A (failed?) attempt to stop thyroid medicines.

[selenipap]

Hi, everyone. Sorry for the long post...

I've been on thyroid hormone replacement since almost 4 years. I started euthyrox on the advice of my gp when my TSH was 2.89 (0.27-4.20). My antibodies were also slightly elevated (TPO: 112 [0-34]) and they remain on this range until today. Back then I was also diagnosed with a thyroid nodule and my ultrasound shows minor alterations from Hashimoto, which have been stable the last 2 years.

When I started on Levothyroxine I've already put more than 10 kg, my face was bloated and I was feeling very low energy. Synthetic levo wasn't working well for me. I kept putting on weight and feeling bloated.

I switched for the last two years to NDT (Thyroid-S) and I was doing much better. I've lost some weight (7kg) and I had more energy. But still I had other issues (onycholysis, sweating).

I came across a meta-analysis (ncbi.nlm.nih.gov/pmc/articl... reporting that a third of the patients who stopped thyroid medication remained euthyroid and I decided to give it a try myself. Basically, I was always doubting the initial diagnosis, because my TSH was not so bad and I now know that back then I was going through a burnout phase from overworking and stress, I had very low vitamin D3, B12 and iron.

So, I decided to wean of thyroid-s slowly (half grain every 2 weeks). THIS WAS A PERSONAL DECISION AND I DON'T ADVICE ANYBODY TO DO THE SAME.

It's been two months I didn't take any medications, only some supplements (multivitamin, l-tyrosine, vitamin d3, ashwaganda). Although my energy remained the same and I didn't experience any serious side effects I've put since then 6 kg (my diet didn't change).

My latest blood test (after 2 months without pills): TSH 4.98 (0.27-4.20), FT4 11.25 (12-22), FT3 3.83 (3.95-6.80).

Now I have two options, to go back to NDT or to give some more time to see if my thyroid will restart with the risk of putting more weight on (my biggest fear).

Any ideas? Did anybody went through the same experiences? Do you think there is any chance for my thyroid to work properly again?

[Jaydee1507 Administrator]

So you have Hashimoto's which causes the slow destruction of the thyroid gland. Unfortunately there is no way for it to recover once that destruction has taken place so taking replacement hormones is the only way to 'treat' the condition.

You should also get blood run for ferritin, folate, B12 & D3 as we get low vitamin levels due to low stomach acid.

[selenipap in reply to Jaydee1507]

Thank you, Jaydee for your reply. I took all the blood test and my d3, b12 and ferritin are ok. I still need to increase them a bit, but I'm working on it.

[tattybogle]

Hi , I think there are 2 separate issues to consider here:

the First is ~ since you do already have some autoimmune damage to the thyroid , and since you have a positive result for TPOab , it is reasonable to assume that some further damage to the thyroid will occur ~ over what time scale ? and how much damage , and what levels of T4/T3 your thyroid will be able to produce , and for how long ~that is all impossible for anyone to say ... it could be many years before it gets any worse.. or it could get worse very quickly...... it might be possible that you can manage well enough without taking any levo ( or T3) for a long time yet , IF you can get 'enough ' T4/T3 from your thyroid . But it is likely to become less able to make 'enough' over time .... because that is what autoimmune thyroid disease does ~ damages it more over time.

The second issue ~ is 2 months long enough ? (to see what your unmedicated thyroid can do by itself ) ... i would say 2 months is perhaps not really quite long enough to give the HPT system 'a fair go' at getting back to its unmedicated levels after being on NDT for 2 years.

yes , the T4 and T3 from NDT will definitely have gone by now , BUT , if taking NDT for 2 years was giving you a very low / or supressed TSH level .. then the thyroid may have shrunk a bit ,, which would take time to get bigger again once it has had enough time of stimulation from higher TSH to push it to try to make more T4/T3 ....and the TSH can take quite a while to be able to return to higher levels if it's been supressed ( pituitary might have shrunk a bit too and take time to be able to make the right amount of TSH).... so even though we can see your TSH has recovered NOW , we don't know how long it has been up there for ... eg. for the sake of argument what if it only 'woke up' and went to 5 in the last couple of weeks ? .. in that case it may need a few more weeks to persuade the thyroid to make more T4 than it is doing just now ... and then see what natural T4/T3 levels settle at.

So if you wanted to be TOTALLY sure that it's NOT going to be able to make any more T4 than the 11.25 fT4 that it is currently giving you ... then you would probably have to wait another few weeks at least and then retest to see what happened .. that way you know " after 'x' weeks with TSH of at least 4 the thyroid can still only make 'x' T4".

Then the decision to go back on thyroid hormone (instead of waiting to see how many years it takes for things to get worse without it) is a simple decision that you won't have cause to doubt.

Obviously the risk you take with "waiting longer to be really sure" is that if can't make more T4 than that no matter how long you give it ,then you will just continue to get worse the longer you stay off the thyroid hormone replacement .

You have to choose .. which is more important to you :

~ being 100% certain you need to take thyroid hormone now (as opposed to probably having to take it in a few years time anyway )

or ~ not putting any more weight on (and more importantly , potentially starting to feel horribly hypothyroid and crashing all of a sudden) while you wait a few more weeks to give yourself more definite proof your thyroid is really unable to cope .

[selenipap in reply to tattybogle]

Thank you, tattybogle for your thorough analysis and help. I'll give it a thought for another couple of days and then decide.