Checking in....

Hi Shannon,

I could have written that comment myself. I remember the vibrting nerves on Levo, I told my new doctor that as I sat in front of her my legs were vibrating. Her response was .....nothing..... I showed her my dissapearing eyebrows and thinning hair .....nothing.... I told her that it had been very difficult for me to walk into her office and that I felt like I was dying, again, ....nothing.

All she wanted to do was measure TSH and T4. God, was I glad when I managed to get on Armour. By a stroke of luck my Levo ran out while she was on holiday last summer. Her substitute thought my request was perfectly reasonable, didn't even ask any questions, just e-mailed a prescription down to the pharmacy and I have felt very well ever since.

Except, of course, she (the one on holiday) would like to lower my dose because my TSH is low! But now I know where to get more NDT over and above what she prescribes so it doesn't matter anymore.

And rhwhittman, I hope you know that you can achieve doses of medication in between standard doses by taking the higher one on certain days of the week and the lower one on the other days of the week. If you are interested I can post some examples so that you get the idea.

Hi LAHs,  

I totally understand where you're coming from with regards to your doctor.  Mine was the same way.  He just looked at me like I was crazy.  Fortunately, I tell him what to prescribe me when it comes to my thyroid and he doesn't argue.  He just checks my levels from time to time.  I'm completely driven by my symptoms though. If he tells me I need to increase or decrease based on his test and I'm feeling good then I won't follow his instructions.  That's as long as my levels are within range.   Now that I'm feeling better on Nature Throid I want to keep searching for a med that will make me feel NO symptoms.  However, I'm still trying to adjust this one so I'm completely leveled out.  I do add a little T4 only occasionally when I'm feeling run down because I read that when you switch from a T4 only drug to NDT your T3 goes up and your T4 goes down.  I'm hoping that it's not permenant and that my body will adjust and produce what I need once it gets used to the new meds.  It's only been a few weeks but what a difference!  Hallelujah!  So glad I didn't just listen to my doctor on this one.  I would never have felt better and I'm sure I would have gone mad!  

Ideas for alternative to nature throid...try WP Throid, aka Westhroid-P, it has fewer fillers in. Or try bovine NDT as it's T4:T3 ratio is reported to be closer to that of humans.

Thank you Barbara!  WP will be my next step if I can't get adjusted to this one.  What do you take?

I'm taking an Over The Counter (OTC), non-prescription, bovine Natural Desiccated Thyroid (NDT) named ThyroGold that I buy off the internet (which was scary to do! - but i had no option when i became allergic/intolerant to the fillers in all the synthetic thyroxine meds). It is with relief (after 25 years of not feeling well on synthetic thyroxine) that I can report it is working really well. My blood test results are all in range for TSH, T4, T3 and ferritin and full blood count. This month, for the first time since 1994, when I was pregnant with my first child, my platelet count has doubled, from around 50 to 100. This was an unexpected bonus. Years ago it was investigated and found that my bone marrow was producing platelets ok, so it was concluded my immune system was killing them off. Does this mean my immune system is calming down - I really hope so? One thing my GP and I have noticed is that when my ThyroGold dose is too low, my % iron saturation levels plummet, from 35% to 19% (which the endocrinologist said was too low). So this may be another indicator to watch when trying to work out whether a dose of NDT is too low.

I've heard good things about ThyroGold.  I have heard that you have to take so much more of the over the counter meds that I was put off by it.  I hate taking pills!  I also heard that they are capsules so it's a bit harder to adjust your meds if you needs to.  What is your experience with that?  Are they expensive and do you have problems with them being out of stock?

The transformation in my health since I've been on ThyroGold is unbelievable. How I feel is collaborated by my blood test results and my GP's observations - he has been monitoting me closely during my trial of TG. The results are so good that I am prepared to fund it myself permanently, even though my thyroid medication should be free on the NHS.

To answer your questions...

Apparently most people require 300-600mg a day. I need 750mg. It comes in capsules of 150mg and 300mg. The 150mg capsules is the size of a 250mg capsule of penicilin. The 300mg capsule is the size of a 500mg capsule of penicilin. I take 750mg a day split into 2 doses: 300mg when I wake up (an hour before food) and 750mg 6-7 hours later. Increasing by 150mg at a time was fine. The capsules are 'plastic' (not really but it conveys what I mean) and can be pulled apart and the NDT powder, which is of the consistency of ground black pepper. This is ideal for people who can't swallow tablets because the powder can be swallowed with a glass of water. Theoretically this means the capsule can be split into whatever fraction of a dose you need.

From my order on 28th December (I ordered 3 bottles of each and got 10% discount) I calculate the 150mg tablets cost 26p each and the 300mg tablets cost 41p each. So a 300mg daily dose would cost 41p (55 cents) and 600mg daily dose would cost 84p (37.2 cents). It was about 10% cheaper when the exchange rate was better.

I have not had any problems with supply as I order 4 weeks before I need them. The expiry date on the bottle is 2018 (2 years away). Even when the tablets were on 'back order' it only took 3 weeks. I may have been lucky with regard to when I ordered as a new shipment was due within 2 weeks. In future, just to be sure I don't run out, I will order when I have 6 weeks supply remaining.

I think that answers all your questions. If you have any more, please just ask and I'll do my best to answer them. The only other thing to add is that TG (bovine NDT) is working so well I wouldn't risk switching to a porcine NDT even it was free and even though I have heard lots of people say they feel great on it. I really don't want to mess with success - I've spent 21 years feeling rough and struggling through and really don't want to risk going back to that!

Sorry folks, that should have said: I take 750mg a day in two doses. 300mg when I wake up and 450mg 6-7 hours later.

When starting on TG I took 150mg for 5 days, then 300mg (split between 2 doses) for a week, then 450mg (split between 2 doses) for 2 weeks, then 600mg (split between 2 doses) for 2 weeks, then 750mg (split between 2 doses) for 4 weeks. After 4 weeks on 750mg I was getting slight palpitations so dropped the daily dose down to 600mg for 4 weeks. At which time a blood test showed my iron % saturation level had plummeted, and my TSH had risen, so I increased my daily dose back to 750mg and this time I was fine. I had blood tests every 4 weeks to check TSH, T3, T4 levels.

Barbara - thank you so much for all of the clarification on the Thyro Gold.  I am very interested in trying it.  Although I feel so much better on Nature Throid, I still get muscle aches and jitters at night. I am working toward NO symptoms and will continue to adjust meds until I find the right one.  I will NEVER go back to the synthetic meds again.  They made me feel AWEFUL!  I am convinced that the more pure the meds are the better they will work for me.  I'm going to be ordering some ThyroGold soon.  The 150 mg pills are on back order right now so as soon as they get here I'll let you know how they are working.

Hi Shannon, keep me posted how you get on. I'd love it if you were to feel better like I do, and knowing I might have helped is the icing on the cake! Barbara