My thyroid was removed a number of years ago.Recently my LLMD said that I needed to use porcine thyroid instead of Synthroid. Our pharmacist said it is just not available...anywhere!
We will probably wind up at a new endocrinologist's office. After thyroid was removed I gained a lot of weight...I had always been on the skinny side. The weight stays on even though I have no appetite and live mostly on protein shakes. The doc says my thyroid is out of whack.
Anyone have some suggestions? I would greatly appreciate your input!
Posted by massman (Member # 18116) on :
Thyroiden from Inno-Vita. www.inno-vita.com Posted by farraday (Member # 21494) on :
Thank you! I just now found the thread on thyroid. Sorry to be repetitive. Will post if I learn anything new.
Posted by Lymeorsomething (Member # 16359) on :
You could always try T3 only. It's a little trickier to manage in terms of dosing and dosing schedule but it will thwart any conversion issues.
Posted by farraday (Member # 21494) on :
Actually that's what I am doing....taking both T3 and T4. And it is difficult to manage that way.
Posted by Lymeorsomething (Member # 16359) on :
I meant strictly T3, but I have used a Cytomel/Synthroid combo in the past.
The natural thyroid meds are often looked upon as the panacea of thyroid issues but not all respond to them well. I know I didn't.
The Cytomel/Synthroid combo can work as long as you find the correct ratio for your body. You don't want too much of that T4 converting to RT3.
Posted by granniela (Member # 17134) on :
Women's International Pharmacy is compounding it. They are easy to work with by mail/fax/phone. www.womensinternational.com phone 800-279-5708
Posted by massman (Member # 18116) on :
IME your glands will get lazy if you take hormones. Their hormone production will decrease.
Posted by lou (Member # 81) on :
Nutri-Meds sells the whole porcine gland. It is both T3 and 4 and probably the other T's. I tried this for a while after the new armour formulation failed.
However, it turns out I have a conversion problem and am now on sustained release T3 and think it is looking like maybe the solution. The RT3 numbers were going up but I was still symptomatic on previous regimens. The hitch is that it is hard to find people who understand thyroid and will know what to try. The same meds do not work for everyone. Plus, I am now having to use a compound pharmacy which is expensive.
[ 01-16-2010, 03:40 PM: Message edited by: lou ]
Posted by massman (Member # 18116) on :
lou - do you still have your thyroid ?
Posted by lou (Member # 81) on :
Yes, still have thyroid. Hypo runs in family. My poor niece had all sorts of unnecessary medical interventions except the one she really needed - treatment for low thyroid function.
Also have anti-thyroid antibodies. Current nurse practitioner who is helping me with this says the treatment I am on usually results in lower RT3 and anti-thyroid antibody numbers.
So, since lyme affects thyroid function and I already had family history, this looks like double whammy.
And, massman, my thyroid was lazy before it got any supplementation.
Posted by massman (Member # 18116) on :
There are many lazy thyroids. Thx
Posted by nannie (Member # 5250) on :
Up please!
Re: natural dessicated thyroid:
1. Nature Throid/Westhroid:
Nature Throid 1 grain tablets backorder shipments are now being filled. New prescriptions can be filled by many pharmacies but will take a little longer b/c the backlog prescriptions are being filled first.
For people on Medicare or Medicaid or w/out insurance, Nature Throid may be an affordable option that is both available at their local pharmacy or PBM and covered by their insurance/PBM
2. Armour thyroid: Armour Thyroid was apparently reformulated last winter-early spring. There were reports of apparent problems with the reformulated Armour thyroid (natural desicated thyroid,porcine dervived). It would appear that the reformulated Armour Thyroid is no longer avaialable
3. Compounded equivalant to natural desiccated Armour Thryoid:
A large wholesaler to many compounding pharmacies made thyroid USP porcine derived powder available to their compounding pharmacies. The drug formula for Armour Thyroid....the detailed drug recipe that also appears to have been made available.
The availablity of BOTH the USP Thyroid powder procine dervived and the drug formula means that a compounded equivilant version of Armour Thyroid may be available from compounding pharmacies.
If you have insurance, you would want to check to see whether or not the compounding pharmacy participates with your insurance company, and whether or not your prescription benefit manager (PBM)requires you to use their compounding pharmacy (if they have one).
The International Association of Compounding Pharmacies has a page on their website that can help you find a compounding pharmacy:
Add to previous post Nature Throid- there are some new prescription drug edits by the Centers for Medicare and Medicaid Services- CMS- that may or may not impact Medicare part D poliyholder's ability to get Nature Throid authorized and covered by Medicare Part D plan sponsors.
Also, many other medicines may also be impacted by the CMS Medicare D edits. Unfortunately, no one seems to know or be able to produce a list of the medicines and brands if generic that would likely be edited and not available to Medicare part D policyholders.
1. Nature Throid/Westhroid:
Nature Throid 1 grain tablets backorder shipments are now being filled. New prescriptions can be filled by many pharmacies but will take a little longer b/c the backlog prescriptions are being filled first.
For people on Medicare or Medicaid or w/out insurance, Nature Throid may be an affordable option that is both available at their local pharmacy or PBM and covered by their insurance/PBM
2. Armour thyroid: Armour Thyroid was apparently reformulated last winter-early spring. There were reports of apparent problems with the reformulated Armour thyroid (natural desicated thyroid,porcine dervived). It would appear that the reformulated Armour Thyroid is no longer available
3. Compounded equivalant to natural desiccated Armour Thryoid:
A large wholesaler to many compounding pharmacies made thyroid USP porcine derived powder available to their compounding pharmacies. The drug formula for Armour Thyroid....the detailed drug recipe that also appears to have been made available.
The availablity of BOTH the USP Thyroid powder procine dervived and the drug formula means that a compounded equivilant version of Armour Thyroid may be available from compounding pharmacies.
If you have insurance, you would want to check to see whether or not the compounding pharmacy participates with your insurance company, and whether or not your prescription benefit manager (PBM)requires you to use their compounding pharmacy (if they have one).
The International Association of Compounding Pharmacies has a page on their website that can help you find a compounding pharmacy:
If you heal the glands in most cases you will not need the drugs or tests.
Pretty radical I know but I have had patients that have done that well.
Posted by canefan17 (Member # 22149) on :
massman,
That's what I'm currently doing : )
I'm terrified to go down the synthetic route.
Supplements + diet for me : )
Posted by Keebler (Member # 12673) on :
- For those searching all over:
Always be sure to ask a top representative at the company (and then confirm from an outside source) about the environment in which their pigs have been raised and how they've been treated, including their diet, lodging and exercise protocols.
This matters a great deal. -
Posted by massman (Member # 18116) on :
And specifically what brands of white wine they drink.
Posted by canefan17 (Member # 22149) on :
lolol
Posted by jamieL (Member # 16563) on :
massman,
so how do we heal the thyroid gland?
I'm all ears.
Posted by canefan17 (Member # 22149) on :
jamie,
First you address the adrenals.
There are many things people do to "heal" the thyroid.
Iodine (kelp), selenium, Vit A, combo vitamins Diet is important. Exercise.
I've even heard of Yoga for Thyroid (all about getting blood flow to neck/thyroid)
Bag of ice on thyroid (helps activate it)
Posted by jamieL (Member # 16563) on :
Thanks for the info, canefan.
How to you help the adrenals?
I did the saliva test a few years ago and my results indicated that I was not making enough adrenalin/cortisol in the a.m. which explains why I often cannot get out of bed.
And then I was making about ten times the normal amount by the afternoon and into the evening.
My dr at the time called it "stress."
That explains why I'm a night owl.
Then they crashed again late at night which explains why when I'm ready for bed, I'm really, really ready to go bed and no one had better stand in my way!
So do I have adrenal fatigue based on those results?
I am making cortisol, just not enough at times and too much at others.
Posted by Lymeorsomething (Member # 16359) on :
Actually T3-only therapy purportedly "heals" the thyroid when used in context of the Wilson protocol.
Some of the docs involved suggested that antibodies against thyroid peroxidase were significantly reduced after treatment.
This is based on anecdotal evidence but is intriguing in that many patients (even those previously hypothyroid) did not need continued hormone replacement after an appropriate number of T3 cycles.
In fact, the same theory is often applied to the treatment of adrenal fatigue by way of cortisol replacement.
It is thought that such treatment allows the involved organ to rest so-to-speak as it is not called upon to churn out an endless stream of hormones.
Some people will occasionally report a hormone rebound after ceasing exogenous sex hormone replacement as the body will try to keep pace with treatment levels.
So hormone replacement is not necessarily evil. It can provide a good crutch for weak glands and give them a window to heal.
Though important, nutrition alone will not give the gland a window to heal. The gland will still be called upon to deliver a steady dose of hormones and if the body is very stressed things just break down despite our best efforts.
So sometimes hormone replacement is the best thing you can do.
Posted by massman (Member # 18116) on :
jamieL - I guess you wade through all the input and experiences on this site. That is what most seem to do.
What apparently does not matter is having lots of training + experience in endocrinology. Actually determining Where the primary problem is (which specific gland(s) and what is probably causing it should also be ignored.
And some here highly recommend diagnosing + treating yourself as ALL docs + practitioners are clueless or money hungry. Or both.
Posted by ping (Member # 6974) on :
My doc just wrote a script for Liothyroxine (T3) to replace the Armour Thyroid that I can no longer find. He said he doesn't like Synthroid and prefers to rx only the T3. I'm a little nervous about this because Armour seemed to work so well for me.
Any comments or ideas?
Posted by n.northernlights (Member # 17934) on :
The canadian Thyroid was bought by Erfa, and they have the good old old Armour formula, before any of the reformulations. Lots of people on forums ahve gotten ahold of Thyroid from Canada.
You have to order it from canadian pharmacies or from Erfa, and they are usually in bottles of 500. 2 grain tablets are probably cheapest.
also, if people have antibodies, they destroy the thyroid eventually and you need to suppleement.
No patients on the thyroid forums have ever gotten off thyroid hormones successfully, at least I cannot remember any.
In case of cfs or lyme, the problem is also on the receptor, and with the cytokines from illenss or infection (like lyme or other things) that lower TSH.
And, iodine is known to trigger thyroid antibodies in a lot of patients. Beware. I got ill from iodine in vitamin pills for a few days, it had such an impact.
Posted by jamieL (Member # 16563) on :
massman,
Was that sarcasm? I couldn't say as sarcasm tends to fly right over my Lyme brain.
Are you saying go to an endocrinologist?
Why not just say that instead of being rude?
Posted by massman (Member # 18116) on :
Many state that they do not need or want docs to help them. They get pretty annoyed with suggestions that they need a good doc and many supplements I recommend are available thru docs only.
In many cases it seems like a knee-jerk reaction. The only experiences they have are probably their own and often their suggestions suggest that what helped them will help everybody.
Supposedly sincere requests for referrals to docs occur. When I call other docs I know personally to set up referrals the patients typically do not contact the doc. So why did they ask in the first place, really ?
Check your PMs.
Posted by Lymeorsomething (Member # 16359) on :
Ping, it's good that you have a doc who is at least open to T3 only. What dose did he start you out at? I just started on T3 myself.
Posted by dmc (Member # 5102) on :
I definately understand Massman. I just went to a new endo from www.bodylogicmd.com
Wow, it was/is like going to a LLMD except for thyroid & ALL hormones.
Very please I went...was told about them by a woman in the Hartford Lyme Support group.
Found out I'm at higher risk for Breast Cancer due to hormone ratios out of sync.
Posted by Lymeorsomething (Member # 16359) on :
Dmc, I've been using them for a couple years now. They're excellent...very open-minded.
Posted by dmc (Member # 5102) on :
Awesome lymeorsom...we probably see the same office.
My regular endo...nice but no where near as thorough. So glad I was told...BTW should let people know it is a national company of MDs.
Posted by ping (Member # 6974) on :
quote:Originally posted by Lymeorsomething: ... What dose did he start you out at? I just started on T3 myself.
Starting out at 75mcg., which is the equivalent of what I was taking with Armour. I imagine we'll have to tweek it somewhat. What's your starting dose?
Posted by Lymeorsomething (Member # 16359) on :
ping, I'm on 50 mcgs, a meager dose, but will increase soon.
For temp reset, doses approaching 100 mcgs and over may be needed. I'm using regular Cytomel in divided doses but at larger doses compounding for extended release may be necessary.
Of course, you can run T3 as replacement or also try something along the lines of the Wilson protocol--two different things. Replacement is continued regularly while the Wilson protocol is run in cycles and then stopped at some point.
I've read the literature of one compounding service that suggested lower doses can work too but it may take longer to feel the results (few months).
Good luck.
Posted by ping (Member # 6974) on :
Lymeorsomething - Interesting. Didn't know about the 100mcg. I'm doing pretty good with body temp, so will see how the 75 mcg works for me.
Will keep in touch and best results to both of us with the T3. (So glad that doc didn't rx T4 also like so many others.)
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