My name is Antonella, I write from Italy. I have secondary adrenal insuffiency due pituitary acth deficiency. I also have a genetic liver illness which make me very difficult metabolize and use every meds, supplements etc. Because of this, despite high dose of hydrocortisone my levels are low ( hc is circulating in blood stream but not well used by cells so it is very very low in each salivary cortisol test). From the start of hc, in 6 month I develop chirrhosis. Hoping slow down the chirrotic process and enhance the hc metabolism, I was put on a cortisol pump in 2017. At the time I was taking a synthetic t3/t4 combo named tiroide IBSA which worked fine. when this thyroid med was put out of market the nightmare begun. I have a lot of allergies due my genetic problem, so, in hospital, in a protect way, we try several t4, t3 . Fillers was a big deal. No allergy with a compound porcine NTD but I went a completely mess in a short time. Finally, I start a Bovine thyroid ( which is only grinded thyroid,brand Ancestral) which worked for a while then my tsh rose to 20 with all the hypo symptoms ( weight gain, puffy face, hands feet, insomnia, brain fog, weakness..). When I tried to rise the dose I had horrible hyper surge and symptoms.( adrenalin surge, hot flush, vascular inflamation, unbearable headache). My high tsh is not only a signal, it comes with all the hypo symptoms ( when I was on the tiroide IBSA med, tsh was suppressed). Endless my endo put me on t3 only therapy. After big efforts, I find a German international pharmacy which prepare t3 with only olive oil like filler ( allergy with the common t3 brands). I was very exciting to start but problems soon arrived . Here it's where I need help.
Now I am on this protocol:
1 caps ancestral thyroid+ 5mcg t3 at 7am
5 mcg t3 at 11 am
1 caps thyroid at 2,30 pm
1/2 caps thyroid at 6pm
I have bad bad headache, inner jittery, vascular problems ( phlebithis), terrible hepatic colic, confusion, adrenalin flush, nausea, kidney pain,weakness can't sleep, can't stand up. At night, 2/3 am ,horrible hot flushing with hyper symptoms which improve with hc bolus . Just now I'm stuck with my back, it's very painful
Now I am on 31 mg hc/day and I have cut the 6pm half thyroid cap yesterday with no benefit
After 3 weeks from t3 start my tsh rose even more! Here that last labs
Tsh 31 ( range 0,35-5,5)
Ft3 3,2 ( range2,3-4,2)
Ft4 6 ( range 6,1-11,2)
My vit d levels are very low ( <10) so b12 and iron (97 range 40-145) but I have to say that years ago when I was compensated with the thyroids meds And hc, levels was worse than this but I was more or less well. Now I'm working on this leaks. ( with big difficulties due allergies)
Questions:
-Why my tsh rise despite t3 intake?
-Should I stop any t4, so wean off completely from thyroid caps, and then start t3? And it's safe to do with only 10mmcg of t3?( because I have to rise very slowly) or should I cut t3 until become symptoms free and then try to add again more slowly?
- in past, if I cut the thyroid caps, I felt better for a little time but after a while hypo symptoms come back, so, when I try to rise again , I can't due horrible symptoms. Have I to cut or can I try to microdosing more often during the day?
- endo say that maybe there is a receptor resistance. In this case can I circumnavigate this issue using a biggest quantity of t3?
- have I to rise hc until I'm able to tolerate t3?
Sorry for this long long message...it's long like my desperation!
Hugs to each of you!
Antonella
Written by
flyngraft
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Welcome to the group. I'm sorry you're struggling.
Do you know how much thyroid hormone is in the ancestral thyroid? Is it fixed or unknown?
People have intolerance of thyroid hormone often due to low vitamin levels. I would recommend you getting blood tests for ferritin, folate, B12. When you have the results post them here.
You need to supplement to get your vitamin levels to optimal which will help you tolerate the T4/T3.
Dear jaydee, thankyou for your reply. I know that optimal levels of iron, b12 and vitamin d are crucial for thyroid hormones tolerance. I know those levels are low:-iron 97 (range 40-145)
- Ferritin 22 ( 11-307)
-b12 276(180-914)
- vit d < 10( 76-375)
Unfortunately, the levels of t3 and t4 of the Ancestral thyroid are unknown, so, of course , it's very hard to manage the therapy.
I'm working on the vitamins leaks but this require time and I'm asking fore some tips to manage the emergency I'm in now.
Unfortunately there probably isn't a quick fix and I was just sharing what will help you in the long term. Microdosing is probably the way forward but I am not familiar with ancestral thyroid. I wouldn't drop your dose as getting back onto it will be hard as you have already found. T4 would probably be more tolerable than anything with T3 as T3 is a lot stronger and can be harder to tolerate anyway.
TSH will rise if you aren't on enough hormone, so you clearly need more.
I agree with you: no quick fix in this situation, I'm struggling for several years now and I see that my inner balance has gone. Find another one require time. You give me a very precious input : I put all my hopes in t3 thinking it was a "ready to go"hormon, which don't require transformation from my poor thyroid and liver. I was thinking that the only problem could be allergy and when I had no allergy to it, I was so happy thinking that everything will be better. If t3 it's so difficult to tolerate, maybe I had to start slowly than I do, leave more time to one rise and another. I will think about how to organize microdosing. Thanks Jaidee
5mcg increases maximum every 2 weeks only are recommended in this group.
You are just sensitive to the thyroid hormone as your tissues are so down regulated, no allergy. You might find lactose free tablets are easier to tolerate, or not.
The main thing is to be working on your low vitamin levels while you work up the dose of whatever you think is best. That is really important and will help you tolerate this better.
For ferritin eat chicken livers a few times a week.
Buy a good quality B complex that has active/methyl vitamins.
D3 needs vit K2 with it to help it go towards your bones.
Was Tiroide a synthetic t3 + T4 in one tablet? Have you tried Bi-Tiron? I'm not sure about fillers as I could never find the ingredients in English. That said it was definitely potent in my opinion. I couldn't tolerate it well though, as I have super low iron. I note your ferritin is low too, but seeing as you managed on the Tiroide, maybe you would take to another synthetic combi tablet.
I've never do very well on on glandular "ndt" It starts off good then eventually nose dives. Also I get the flushing and hot pain. But usually I see people who do well on it can end up taking quite a lot of capsules. 4 - 8 is not unusual (that said I am thinking of Metavive and do not know much about Ancestral) so just maybe you need more. It could be more makes up for the inevitable variance in hormone content between pills.
Dear Alanna, thankyou for answer, I will go to do some research about bi- tiron. Already tried Metavive, wasn't good for me. Already tried the other t3/t4 combo tablets but had problems with fillers this is why I 'm using this t3 with only olive oil like fillers. Thanks for inputs!
Welcome to our forum and sorry to hear you have such complex issues.
Your results are commonly seen in people who takes galndular NDT as opposed to a prescribed NDT which is processed in a different manner with exact known hormone content.
We have members who mange their thyroid issues with glandulars or use them to supplement along side synthetic meds (or prescription NDT) but there are also members (including myself) who have suffered horrendous thyroid glandular experiences.
As you are struggling with the glandulars, I would switch back to a prescribed NDT if you want T4 within your meds. There are also members who report to have achieved well-being on T3-only so this could be an option but I doubt you have thyroid resistance in the true sense as have previously found normal doses of T4/T3 to eliminate symptoms. It's likely more a case of finding the T4/T3 meds and ratio that suits which is a problem lots of members suffer.
An atrophied thyroid gland would indicate autoimmune disease and a high autoimmune response can still continue after the gland is destroyed. Have you taken steps in trying to control the inflammation? Sometimes it’s a case of trying to build iron and nutrients, balance blood sugars, and other hormones including your HC, adopting gluten free diet, etc, etc, that will allow the body to become more tolerant.
One of our admin, helvella has a great list of meds and their fillers in his Vade Mecum (fancy word for reference book) ... healthunlocked.com/thyroidu....
Dear Radd, thank you for your reply, I'm definitely in the group that had problems with glandular...NTD don't work well for me as well. Due all the complex situation and conversion issue, my endo suggest t3 only therapy and I also think that this could work for me, so this was the first option but I' m considering synthetic t3 t4 as well. At the same time I know I have to work simultaneously on the other pieces of the puzzle ( vitamins, inflammation...)
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