Back again

[Dryski]

This is an update to all the kind folks who were so concerned for me trying to stop medication. Just letting you know I made it six weeks without levo but my tsh shot up to 9.1 in a range of 0.36 to 3.74. Needless to say I am back on meds starting over with 25 and moving to 37.5 in another day. My 3 and 4 maintained in range. Still going to endo later in the month for blood sugar and full evaluation. Some people may be able to stop meds but I am back to levo for life. It was a ride and I'm feeling pretty tired with a high tsh. Just to clarify I am from the US for folks who got upset over my previous posts.

[Wired123]

I tried this once as well, had exactly the same experience as you: my TSH shot up and my T4 level dwindled. I felt pretty rough, tired and constipated as well as gained weight. Never again but it’s a choice if one wants to prove to themselves that they really do need the Levo.

[Mostew]

Where is the evidence of those saying they stopped levo. I'd be interested to read it.

Glad you did experiment. It's always best to see for ourselves . Well being can be achieved despite not having perfect physical health.

Let us know how you get on at endo

[Dryski in reply to Mostew]

No evidence really although I did see some posts on here and conversations regarding doing a challenge just to see. Some women need it during pregnancy and then can be removed later on. I was told I was overmedicated by a new doctor and basically withdrew and started over. Was holding high hopes but my body wouldn't compensate right now. I was up to 137 and dropped to none. Starting over.

[Mostew in reply to Dryski]

I’ve heard that to..

[greygoose in reply to Mostew]

From years and years of reading on different thyroid forums, it is often people with Hashi's that claim they have been able to stop their thyroid hormone replacement.

After a Hashi's 'hyper' swing, on the way back down to hypo again, levels can stay euthyroid for quite a long time - they don't always, but they can. And this is when a lot of people claim to have 'cured' their Hashi's and come off levo and be well.

But, of course, it doesn't last. Very often they come back to the forum for more advice having found themselves very hypo once again, and can't understand why. Which is one of the reasons why antibodies should always be tested.

[Mostew in reply to greygoose]

Aah that explains it . Thanks

[inthedoldrums in reply to greygoose]

Aaahh, that is so interesting because I had major tummy surgery 2 years ago and my ME/CFS disappeared completely for six months and then all of a sudden one day out on a walk it came back and I could hardly make it back to the car. I should add that I originally was on Levo but was told to stop taking it as I was having such dreadful effects from it and sunk into ME/CFS as a result. All the best.

[greygoose in reply to inthedoldrums]

Have you had your antibodies tested?

[inthedoldrums in reply to greygoose]

Sorry I have just picked up your rely a little late but yes I have had peroxidase antibodies on all of my tests even way back when the GP said they didn't matter Thank you for asking. Take care and all the best.

[greygoose in reply to inthedoldrums]

So, what were the results of your TPO antibody testing: positive or negative? And did you know that there's another type of antibody used to diagnose Hashi': Tg antibodies? The NHS rarely tests them but if they are positive you have Hashi's, regardless of the TPOab results.

[inthedoldrums in reply to greygoose]

Hi I have just had a look at my latest tests from March this year which were done via The Thyroid Clinic and the result says, hypothyroidism with positive thyroid antibodies. the readings are:

Thyroid Peroxidase Antibodies 0-34kIU/L 55.5

Thyroglobulin Antibodies 0-115kIU/L 19.40

I was just looking at some old tests from 2016 via Blue Horizon and they were much higher back then TPO 104.6 and TG 105

[greygoose in reply to inthedoldrums]

OK, so you have Hashi's, and you've had it all along. Doesn't matter what the actual level of the antibodies is: they're either positive or negative, but they fluctuate all the time, and tend to decrease as the thyroid is slowly destroyed because there is less work for them to do - i.e. clean up the blood after an immune system attack.

And that would fit with what you said above: I had major tummy surgery 2 years ago and my ME/CFS disappeared completely for six months and then... Sounds like the sugery triggered a Hashi's 'hyper' swing, and then you went back to hypo again. Did nobody explain to you about Hashi's?

[inthedoldrums in reply to greygoose]

No, not at all! So could it be that when I went downhill badly in January this year that that was a swing in the other direction? In January we went away and I got terribly cold for the first few nights in bed and went downhill from there.

[greygoose in reply to inthedoldrums]

If by 'swing in the other direction' you mean hypo getting worse, no. It doesn't work that way.

When the thyroid is being attacked by the immune system, the dying cells deposite their stock of thyroid hormones into the blood, causing FT4 and FT3 levels to rise suddenly. Once the excess hormone has been used up/excreted, levels go back to what they were before, they can't get worse then get better again.

[inthedoldrums in reply to greygoose]

Oh thank you for explaining that. I really do appreciate your help as although I have been hypothyroid for years I never thought to look deeply into the Hashimoto's thing because the GP's just brushed it all under the carpet as unimportant. I really only started delving in again because I have been so unwell since January and decided to try T3 again as I was pretty desperate. The best surprise was to find that everything is much more accessible now than when I was originally ejected from the NHS T3 supply chain and there is so much more information outside of the NHS, like yourselves. I'm not knocking the NHS as my tummy surgery experience was top notch but, the thyroid business left me feeling very upset, angry and let down, same as most people on here.

Anyway, let's look on the bright side and I hope you have a lovely weekend and keep well yourself.

[greygoose in reply to inthedoldrums]

Yes, doctors don't understand enough about thyroid to realise the significance of having Hashi's, and do tend to ignore it. Which is totally wrong of them because when patients levels start going haywire, they're absolutely stumped as to why. But, you can't teach a doctor new tricks. 🤣

[inthedoldrums in reply to greygoose]

😄😄😄

[Sunflower64 in reply to greygoose]

Unfortunately, and even worse, we hear the same from some doctors!

They either claim that you can cure Hashi’s by lowering antibodies, or that thyroid glands can magically regenerate and start working again.

[greygoose in reply to Sunflower64]

Yup. They haven't got a clue!

[helvella Administrator Thyroid UK]

PS If you put USA on your profile, you don't have to say it in posts!

[SlowDragon Administrator]

Luck you didn’t become more unwell

Helpful if you add USA to your profile

And age and gender

[HealthStarDust]

Interesting that your TSH raised without treatment when your diagnosis is secondary hypothyroidism.

[tattybogle]

well it's answered the 'do i have secondary hypo ?' question...... apparently not .

your pituitary appears to be doing what it should and increasing TSH in response to low thyroid hormone levels .

were you told you had central hypo at diagnosis ? (before you first started taking any levo)

[Dryski in reply to tattybogle]

Fifteen years ago I had a micradenoma when this started and was told it was central or secondary. Scans showed it had disappeared after ceveral years but I think now it was hashimotos all along. Was also told back then that my tsh was not accurate and needed to be treated by the ft4 level. Now they go by tsh.

[Sunflower64]

I also tried to go off thyroid hormone. I did it after reading books and articles by a doctor (recommended on forums I was a member of at the time). This doctor claimed animal glands had healing properties and could even make atrophied thyroid glands regrow. It may sound strange that I fell for it, but I was desperate. I had successfully been on Thyroid-S for years, then it was suddenly unavailable, then not working as well as it used to, and the idea of going back on levo was so bad that I was willing to try anything…after four weeks off thyroid hormone, I had to go back on it.

I think it is very good that you provide us with an update, because questions are asked here from time to time about getting off thyroid hormone. So it is really good that members who tried to do it tell us about their experience; it can make is easier for others to make informed decisions.

[TaraJR]

Sadly, some doctors (I'm un UK) are getting patients to do trial coming off thyroxine - 'just in case they weren't hypo in the first place'. Very worrying.

If you take thyroid meds when you don't need them, you'd have nasty side effects anyway and would report them and/or stop taking the tablets. You don't need a trial to tell you this, and it could make you very ill. Drs' egos ...?

[Dryski in reply to TaraJR]

I agree now that I've tried it its very hard on the body stopping and restarting again. Would not recommend unless really over medicated or some other reason making it necessary.