thyroid meds

[Denny39]

I was on levo 25mg for 6 months and then changed to NDT armoury 15mg twice a day. Was only on NDT armour for 7 days and took a very bad reaction. Doctor told me to stop all meds and I’ve been off them for 2 weeks. My TSH was 6.5 on meds and now I’ve come off them it’s went down to 2.3. Not sure why this would be - does anyone know? Doctor has told me to repeat bloods in 4 weeks time as there might be a lag in my bloods. I know NDt armour can suppress TSH but I only took it for 7 days and had no meds for 2 weeks. Thanks all

[SlowDragon Administrator]

NDT can cause autoimmune reaction

thyroidpharmacist.com/artic...

There are also those that feel that for some patients, NDT medications may actually be perpetuating the autoimmune attack due to the fact that they contain thyroglobulin and TPO antibodies (since they are formulated from animal thyroids).

The bottom line is that different people will do best on different medications. A practitioner must monitor a medication’s effectiveness, checking labs and symptoms. If someone starts feeling worse on NDT medications or has an increase in thyroid antibodies, I’d then recommend they switch to a compounded T4/T3 medication (using synthetic hormones).

So you are now not taking any replacement thyroid hormones at all

Retest thyroid including antibodies and vitamin levels 6-8 weeks

Assuming you need to restart levothyroxine, the aim is to increase the dose levothyroxine slowly upwards until TSH is around or under one. Ft3 at least 60% through range, usually Ft4 a little higher, all four vitamins at optimal levels

[Denny39 in reply to SlowDragon]

Yes that’s what happened to me I had an autoimmune attack from armour - I am one of the unlucky ones. Do you know why my TSH got lower when I come off the meds? And yes I am retesting in 4 weeks so that will be 6 weeks in total and then deciding a new plan with my endo. Thanks

[jamesal0]

Great article. I thought it was well balanced and fair NDT v Levo . And really liked "Thyroid medications have a narrow therapeutic index, meaning that they are “goldilocks” hormones, and careful dose titration is needed to get things “just right.” Doses that are incorrect by just a tiny amount can result in symptoms from over-treatment or under-treatment. " So true.

I feel this is even more so with NDT . You need to watch for hyper symptoms and optimize the dose down as soon as you feel them (like same day). Impossible when using blood tests as the guide.

[Denny39 in reply to jamesal0]

How long does the anxiety last when you are hyper? I’ve been on no meds for two weeks now and have anxiety

[jamesal0 in reply to Denny39]

It will get worse the longer you are off it. Just go back on 15mg perday for a week and then slowly add another 15 in every second day or until you go hyper again then back away a little. After a few months you body will adjust to NDT and then you will need even more. I'm on 120mg and know plenty of people on twice that. But it really depends on how much your thyroid function remains. Also a maternity thermometer is handy - take your temp 3-4 times a day for a few weeks - you should be 36.7C ish. I never am, I flap, sometimes as low as 35.6. Thyroid drives body temp and body temp can be used to drive thyroid dosage .

[Denny39 in reply to jamesal0]

I can’t take that medication my body had an autoimmune reaction to it.

[jamesal0 in reply to Denny39]

If you have and underactive thyroid. You will have to take something or it's going to get messy. Your choices are Levo or NDT.

[Denny39 in reply to jamesal0]

Doctor told me not to take anything until I have my bloods. Since being off meds for 2 weeks my thyroids numbers look normal, but he said maybe there is a lag in the bloods so I have to not take any meds for a further 4 weeks, get bloods tested and go from there.

[jamesal0 in reply to jamesal0]

You get anxiety both Hypo and hyper. They are different anxieties and you will learn how to distinguish. One is I'm going to get fired feeling and the other I have to clean the house now - like NOW. What was your "autoimmune reaction" to NDT ?

[Denny39 in reply to jamesal0]

Autoimmune response was diarrhoea, sickness, couldn’t swallow, sweating 24Hours a day, very high heart rate, confusion, anxiety. Felt like I was dying. Couldn’t eat for 10 days.

[jamesal0 in reply to Denny39]

Sounds a little like going hyper to me, but 30mg is a tiny dose, and most people's endocrine system will just convert excess to RT3 and dump it into urine. What was wrong with Levo

[Denny39 in reply to jamesal0]

I couldn’t stop needing to pee when I felt very poorly from the armour - please I was only on it for 7 days.

I was just still feeling fatigued on the levo so the doctor decided to change me to NDT armour. The doctor should have probably increased the levo as I was only taking 25mg at the time. I am quite a thin person and only weigh 8 stone. I have now been on no meds for two weeks and I’m having anxiety and a sense of doom which is not nice for me. The doctor took bloods but my thyroid numbers looked ok - t3 is 4.1 t4 16.4 and TSH is 2.33. Them numbers are without any meds for two weeks. The doctor said we need to repeat bloods in 4 weeks as there is possibly a lag. What do you think?

[jamesal0 in reply to Denny39]

One other thing. When I first got diagnosed. My TSH flapped up an down quite a bit (18 months maybe) It's the thyroids last gasps as it dies. It actually goes hyper one month, then hypo the next and so forth. If you took bloods at a low point and then attempt to take Levo or NDT when it's on a high you will go hyper.

[Denny39 in reply to jamesal0]

Thanks for all the info appreciated. How have you managed with your job/working during all of this??

[jamesal0 in reply to Denny39]

Once I got NDT bedded down I was ok with work. Although when I was pushing the dose up around 180mg, I totally stopped sleeping every 2nd night. That was fun - I'd try and grab 40min at lunch time in the back of the car . Sleep is better on 120mg but I still wake up at 2am every second night and cant get back to sleep until 5am. I have to be carefull - sometimes when I'm pushing up past 120mg I get snappy with people too. I told a guy who sits diagonally opposite me at work - if he didn't stop talking I was going to shove his umbrella up his arse. Some how I managed not to get a trip to HR. Secretly I think management agreed with me.

[Denny39 in reply to jamesal0]

I’ve been the same as you since stopping all meds I have tingly pains in legs. I was putting it down to my levels being off but you do start to worry about something else.

[jamesal0 in reply to Denny39]

Everything is about Thyroid for us Hashies - if my theory is right your thyroid is dying and dumping T3/T4 and you are hyper at the moment. Check your temp, if you are low thyroid meds for 2 weeks you will have a low temp.

[Denny39 in reply to jamesal0]

The hyper symptoms I experienced I think have subsided. My bloods were all ok from last Friday t3 4.1 t4 16.4 TSH 2.33. But I heard there is a lag and I have to repeat in 4 weeks. My symptoms are more heading towards hypo now fatigue, emotional. Although I do feel really warm still and not cold like I have done from hypo in the past. My antibodies are 300. I still have anxiety. Will I be ok not taking any meds for another 4 weeks? Thanks

[jamesal0]

Yes the feeling like you need to pee and then only doing 50-100ml is my experience too. For me it was on Levo mostly. But I also get it to some extent on NDT especially at night or if I have an appointment with the bank or GP etc (stressfull situations). I'm getting checked out by a urologist at the moment - but like every thing for me - it's going to be about thyroid. Example - I had tingles in my feet, went off to Neurologist -nothing wrong. Changed Levo to NDT - got better. (now I know it was just taking too much Levo). Had joint pains - went to best Rheumatologist in Sydney - it's not arthritis. (Now I know it was just taking too much NDT). I would bleed more normal when cut - in the last 5 years. Improved significantly after going on NDT and getting enough thyroid into the system. For people like us it's all about thyroid medication and getting enough T3 into the cells.

3-7 Days is about how long it takes “goldilocks problem” for excess thyroid to accumulate and then you start feeling horrible. You need to tune NDT. So when you start feeling bad - you are either too high or too low. You have to decided which it's likely to be, and take a punt - go up or go down. Then after a month your body will acclimatize and you can go up again . Your blood tests may have been about right because you stopped NDT long enough prior to the test ? The sense of doom is absolutely horrible - I know I get it too. I think it's low thyroid for me. High thyroid -is high anxiety - like I'm trying to run away from myself. Swapping back and forth between NDT Levo does tend to bring out all the fun stuff. When I get lost (am I high or am I low) I always go down (stop for a few days) and then start again on a slightly lower dose. At the end of the day you have to "thread the thyroid needle" so to speak, so it's just a matter of finding what works for you . Flipping and flopping back and forth will result in you getting lost and with "a sense of doom" hanging over you, makes it doubly hard.

J