New endo and different medicine : Had my first... - Thyroid UK

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New endo and different medicine

JennaShi profile image
19 Replies

Had my first and last appointment with this endo (shes moving). She confirmed that I have hashi and graves disease. Assumes that because I am on 100 synthroid that my thyroid is no longer active, but is unsure because I still have high antibodies.

Unfortunately only really looks at tsh and foes not recommend pig thyroid gland, however willingly prescribed 2 grains so we are going to give it a try! Hopeful. Will be seeing a new endo in 7-8 weeks.

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JennaShi profile image
JennaShi
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19 Replies
shaws profile image
shawsAdministrator

If she is prescribing 2 grains of NDT and you are taking 100mcg of levo, 2 grains might be a bit too much inititally. 1 grain of NDT is equal 'in its effect' to 100mcg of T4.

I am not medically qualified but would start on 1 grain of NDT (= 100mcg T4) and take pulse/temp regularly and add 1/4 tablet every two weeks, always taking note of symptoms (being relieved hopefully) and pulse/temp. If either goes too high drop to previous dose. I shall give you some links which might be helpful too.

getrealthyroid.com/conversi...

Copy and paste the tinyurls onto a new page:

Chapter 2

tinyurl.com/ya5blrr2

Chapter 3

tinyurl.com/y7ejh9sh

Chapter 7

tinyurl.com/ycxpz565

JennaShi profile image
JennaShi in reply toshaws

Thank you Shaws! Would it be good to cut it in half then? I was thinking that it would be alot too. I think she was trying to consider my t3 medicine as well and was verbally going back and forth from 1 grain to two. I will read the articles, thank you for your help.

shaws profile image
shawsAdministrator in reply toJennaShi

We can buy a pill cutter - this is one SeasideSusie recommended and it cut into halves or quarters quite easily. Some you have to pay postage. I bought a few different ones before I got this one. Of course buy what you think is best for you.

amazon.co.uk/gp/offer-listi...

JennaShi profile image
JennaShi in reply toshaws

Thank you Shaws!

SeasideSusie profile image
SeasideSusieRemembering in reply toJennaShi

JennaShi

I managed to get that Safe and Sound pill cutter in my local pharmacy for £2.99

JennaShi profile image
JennaShi in reply toSeasideSusie

Thank you Susie, I will most definitely check. I have a wuestion for you and Shaws, before I looked at my messages, I took the full 2 grain pill and am sonce warm and not feeling the greatest. Is there anything I can do to help flush put my system or do I just wait it out and half the dose tomorrow. Its not terrible but I notice the symptoms.

SeasideSusie profile image
SeasideSusieRemembering in reply toJennaShi

Jenna

I don't know of anything you can do, so just hang in there. See how you feel tomorrow, if you feel OK take your 1 grain. If you still don't feel right then don't take any tomorrow, maybe you can start the day after with 1 grain.

JennaShi profile image
JennaShi in reply toSeasideSusie

Will do, thank you Susie!

JennaShi profile image
JennaShi in reply toSeasideSusie

Halfing the pill most definitely worked and is alot better thank you!

silverfox7 profile image
silverfox7

Good points from shaws. I was on 125/120 and missed my sweet spot on NDT as I was following instruction to increase by half grains and then when reach two drop down to increases of a quarter. I got up to three and was good but not as good as I thought I should be. ENO appointment due and first test on NDT showed I was over medicated and was asked to drop down to 1.75 which I thought was a huge drop but he was spot on! By going from 1.5 grains up to 2 I had missed the 1.75 where I was supposed to be and I found that being slightly over and slightly under very much the same! Now if I don't feel good I always drop down and try that before I would consider raising my dose. I I drop back and feel better then that was the right decision but it I drop back and feel worse then I know I need to increase.

JennaShi profile image
JennaShi in reply tosilverfox7

Sounds like you have a great endo! When you lowered your dose did you call in and request for a lower dose or cut your medication into smaller pieces?

silverfox7 profile image
silverfox7 in reply toJennaShi

Cut it!

JennaShi profile image
JennaShi in reply tosilverfox7

Great thank you!

Phoenix605 profile image
Phoenix605

It would be worth finding where she is moving to, that way if your new endo is a typical ‘levo is only treatment’ dogmatist you could consider whether some travel would be worth it to keep prescribed NDT, I know I would.

JennaShi profile image
JennaShi in reply toPhoenix605

You’re right. She is moving about two hours away. I will be seeing her medical assistant until new endo is officially established. I agree, there are so man doctors being paid well to sell synthetic its ridiculous. Hopefully new endo will not force it.

StillEverHopeful profile image
StillEverHopeful in reply toJennaShi

I would willingly travel 2 hours to see a good Endo.

LAHs profile image
LAHs in reply toStillEverHopeful

That's the spirit! My doc is 3 hours away but you only have to go once or twice a year. I play books on CD, if you go on the train, read a book, turn a big inconvenience into a joy.

LAHs profile image
LAHs in reply toJennaShi

Jenna, hang on to that doctor if she will prescribe NDT. Go see her at her new location once (to establish trust) but then ask her to email prescriptions so that you don't have to travel too often.

On the subject of overdosing (slightly), don't forget that it is the T3 that could cause trouble but that only has a half life of ~8 hours so if you are still OK by mid afternoon then you have nothing to worry about. But realize that you have gone beyond the "sweet spot" and drop the dose the next day.

My only criticism is how does she imagine you can have Hashi and Graves at the same time, one is an under active thyroid and the other is over active. But never mind that, she will sort that out for herself at some point. Just hang on to her for the NDT script!

JennaShi profile image
JennaShi in reply toLAHs

For sure, I will see first of the assistant and new endo will prescribe amour NDT and if not will travel to her.

Sounds good thank you, I did half the dose today and feel pain but I think its normal with switching meds.

Regarding the comment about hashi and graves, I have high antibodies for both. I previously had graves about 3 years ago. I had gotten the RAI treatment back in 2010 but it didnt work and was still hyper after treatment through 4 years after (2008-2014) . Then 2015/16 started noticing hypo symptoms and was diagnosed with hypo and later antibodies for hashi. I brought this to her attention and she sad that since both tpo and tsi are still high that they both still active and could go hyper.

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