The potential missing link is while on fin our estrogen levels rise. Copper is positively correlated with estrogen, so levels could have possible built up and been stored in the liver, brain and various other places while on fin. Copper is also the only metal that is a 5ar1 and 2 inhibitor ncbi.nlm.nih.gov/pubmed/7738354. Ive also found a load of info about high copper bringing down histamine levels. Dont want to get in trouble by hijacking jns thread so if you want to talk copper come to
viewtopic.php?f=4&t=3968&start=40
we are all over it from about 2/3 of the way down on the second page
This stuff should be on another thread. JN has not mentioned ANYTHING about heavy metals or copper. MEW, can you move the recent posts?
This post concerns both copper toxicity and wilson’s syndrome. If I posted it on letsconvenience’s recovery then people would be saying that the post has nothing to do with Wilson’s syndrome. So please give me a break. I am trying to put things together. Lets not be so close minded.
Hey,
Just to let everyone know I deteriorated the last 2 weeks. Actually quite significantly; erections much weaker, no libido, tonsils exuding pus (like in the old days), cold extremities).
Naturally I started panicking (it’s what I do), saw the endo who is basically an old crusty piece of shit, and he was useless. Anyway, it’s possible my body’s own T3 has been suppressed, hence the dip. For the last 3 days I have been taking 50mcg twice a day, and feel much better, erections better, tonsils down etc.
Points to note
-
It takes reverse t3 12 weeks to leave body. I have been on t3 for 10 weeks. Some people notice nothing for 12 weeks and then a sudden improvement in all thyroid related symptoms.
-
The body can only actually utilise a certain amount of exogenous t3 (in the presence of high reverse t3). I have read that if one takes say, 50mcg of t3, only 12.5mcg will actually be utilised. Thus the emphasis is on frequency of dosing, rather than amount of dosing. Maybe this explains the improvement of symptoms in the last 3 days (increasing to 50mcg twice a day).
-
I have booked in to see an anti-aging doctor. Yes, another doctor. She has reassured me the following
- She will check my ferritin. (One’s ferritin should be at least 80 for T3 to be effective)
- She will do 4 saliva cortisol tests in 24 hour period to assess adrenal function
- She will be open to being challenged by me on an intellectually intense level regarding my care. She is aware that most doctors I have seen have been crusty pieces of shit, often with the title Professor before their name.
I am seeing her in 4 days time and am hopeful. It seems that slow release T3 is not necessarily required. There is an excellent thyroid forum (haven’t got it to hand) and a chap called Nigel who seems passionate about exact dosing of T3. Slow release T3 absorption can be variable. He has found most success with 4 times a day dosing of cynomel (non slow release T3). I will try and add the link later.
- I am feeling a lot better these days on T3 and am hopeful of making a full recovery.
Recent blood test results
25/6/2010- on T, HCG, DHT
DHEA 15.2 range (4.3 to 12.2)
Cortisol 601 range (160 to 650)
Reverse T3 786 range (140 to 540)
TSH 1.7 range (0.3 to 5.0)
Thyroid antibodies negative
6/09/2010 - on 50mg T per week, HCG, 50mcg T3 per day (for 9 weeks)
Free T4 11.7 (9.0 to 19.0)
Free T3 4.2 (2.6 to 6.0)
TSH 0.7 (0.3 to 5.0)
Testosterone 27.1 (11.0 to 40.0)
SHBG 49 (10.0 to 70.0)
Free T 479 (260 to 740)
With reference to my free T3 level. I was told today by the moderator of SSTM that I should aim for a free T3 level slightly ABOVE normal range as I am on T3 therapy alone. This is because T4 will fade to negligible amount and will not convert into T1 and T2 which also have some thyroid activity. T3 thus has to be higher to compensate for a lack of T1 and T2.
My endo decided not to add reverse t3 onto my last set of blood tests as he ‘wanted to keep the test away from the authorities’. !!?? What?? This confirms he is, indeed, a crusty piece of shit.
I actually ordered my own reverse T3 in June, which I am no longer allowed to do (conditions imposed on me by medical board!).
Anyway, from the above set of reasonably incomplete results, I will increase my T dose to 80mg per week and work on the free T3 level to get it to the top of normal range.
Anyway, the sun is shining outside and I’m going for a rollerblade with my dick out. Laters.
JN
It seems like you’ve had a return of hypo symptoms. This is outlined in a lot of RT3 message groups and websites.
I’d say it’s more probable than possible that your own T3 has been suppressed. The standard treatment recommended on most of the current RT3 sites I’ve read, including the yahoo group by the STTM author and webpage developed from these experiences http://thyroid-rt3.com/dosing.htm is that people generally start off on 25 mcg dosing 4 times a day and work up over the 12 weeks to higher doses above 87 mcg as the body’s production is suppressed. So your starting to tank by taking 50 mcg at the 8 week mark fits in well here. Also to note, most people don’t recommend the slow release T3, but rather dividing their dosages up during the day as you can control by symptoms and the medication absorption will not be impaired by food. Given the timeframe that you are crashing this is encouraging as hell, because if you took the 50 mcg for an extended period of time and didn’t crash we would have to wonder why, because this level is too little from other people’s experience, you cannot clear all RT3 with this dosage. You need to up the dose depending on the symptoms.
I’m rewriting this paragraph because when you mentioned synthroid I was confused. Are you referring to Synthroid as T4 or T3? I think Cynomel is T3 and Synthroid is T4. Regardless, all of the reading I’ve done does not support T4 supplementation with high RT3 levels. You’re still on the path to eliminating RT3 from your receptors, albeit in an unorthodox way judging by other patients experience. If you’re gonna do this and do it right you will need to pay attention to your symptoms and start dosing more sensitively, probably eliminating the slow release T3 and going for 4-5 time a day dosing and slowly increasing until the receptors clear and you get hyper symptoms, then waiting a day and backing the dosage down to 50% of what it took to get there.
I think you’re on your way too, this is a sensitive stage, I think you really need to pay attention to symptoms and dose from there. Bloods will take too long. Can you get a hold of non-slow release T3 and start dosing as suggested by the RT3 groups?
MartinM,
Fantastic post. Thanks so much; a lot of what you say makes sense. You seem to know more than me on this whole issue so I respect your feedback. Hopefully all this information can be of use to EVERYONE who is starting out on T3.
Yes, I got synthroid and cytomel mixed up. I agree that T4 certainly is not a treatment for high reverse t3 levels. I shall edit that previous comment.
Yes, I suffered a pretty spectacular crash in symptoms; I reached an excellent state where I was having sex every evening without even thinking about it, only to dip into the doldrums.
From what I have read on thyroid forums, it appears that 4 to 5 times a day dosing with T3 (not slow release) is the best method of assessing one’s needs in a situation such as this. And yes, withdrawing when I experience hyper symptoms.
My plan is to ask the anti-ageing doctor (who I see on Monday, 4 days time) to prescribe T3 (not slow release) in divided doses. Until then I will take 50mcg twice a day.
Does it sound sensible to take 20 to 25mg 4 or 5 times a day?
Thanks again Martin.
JN
from dr. mariano:
Anyway, i suppose he indicates perhaps not just being treated with cytomel, but looking for underlying factors (we know finasteride was a trigger) but looking to see if any others may still be present.
JN, no worries man, we’re moving forward. I think everyone appreciates your bodily experiments. The latest development is very positive!
I’ve seen a number of different ways dosing is done from people who have claimed to have success on the thyroid boards, it seems to really depend on individual response, so you’re gonna have to find this one out on your own once you have the non-slow release T3. The general consensus is 4-5 times a day and determined by temperatures and symptoms. Essentially you’re taking over your bodies regulatory mechanism, so you have to dose often because you eliminate the storage hormone, and you don’t have time to get the blood tests, so you’re the feedback mechanism. You have to start tracking your temps. I posted a good iphone program for doing this in the temp tracker thread.
http://thyroid-rt3.com/dosing.htm
If you haven’t read the site above you should give it a good read through, check all the links. Also, join the associated yahoo group here:
http://health.groups.yahoo.com/group/RT3_T3/
There’s lots of feedback from people who’ve already walked this path and the owner is quite responsive. if you post and get info there please share.
Given your background you probably know more about the pharmaceutical brand, you could check with the pharmacist, but generally it’s not a good idea to split timed release meds. You could end up with an uneven mixture of the timing mechanisms. It sounds like you hit the point where your body dropped production of T3 and you were left with too little. You’re dosage jumps are pretty drastic from what I’ve read, so you probably had too much to start, dropped to too little, and now will have too much again, but I’m not sure there’s anything you can do because you can’t fine tune the dose until you get the basic T3. As you stated, it’s gonna be a process. Frustrating as all hell but you cant fight it.
Hi JN
Sorry about the crash. Please don’t lose hope though. I think it is very encouraging though that you have experienced such a great improvement while taking the T3. I also think that this is a strong indicator that thyroid issues are at the core of our problems.
I noticed that your cortisol levels on the 26 June were quite high. I have read that excess cortisol is one of the main causes of T4 being converted into RT3 and so it is recommended that the cortisol levels be brought down before starting treatment for Wilson’s. I don’t want proclaim that this is definitely the reason for your crash, but I think that it is a possibility worth considering. They also recomend that any adrenal fatigue be sorted out prior to treaing the thyroid as well. You adrenals are probably fine though given your very good DHEA levels.
A second question that I would like to ask you is have you been tracking your body temperature while being on the T3 and was your crash correlated with a drop in body temperature?
RSA,
Yes, some good points there. This is my plan. Feel free to comment/add.
- Check ferritin. One needs a ferritin of 80 for T3 to work properly.
- Check Vit B12
- Track adrenals closely, as you say. That said, my cortisol has always been high (I know, not always a great sign) and DHEA always slightly high out of range. I also have NO symptoms of adrenal fatigue. My sleep is excellent, no dizziness on standing, no salt craving.
- Change to T3 25 mg 4 or 5 times a day. (not slow release).
Wrt body temperatures, all I can say is that they were generally higher 5 or 6 weeks after starting T3 than beforehand.
Before I was getting regular morning temps of 34.7 to 35.1 Celsius (sorry, this is UK measurement!)
After 5 or 6 weeks I was getting temps of 35.5 to 36.1 Celsius.
I didn’t check my temps when I was peaking a couple of weeks ago.
When I crashed (in the last 2 weeks) I noted my temps were lower again. 35.2 ish.
So, I would say there was an association.
I am confident in getting better, and hopefully this means everyone else has a great chance of full recovery. I was firing on lots of cylinders a couple of weeks ago (!!!) and quite frankly, was feeling fantastic…and still not totally better!! Wow, I would LOVE to feel great again. That’s everything. That’s the meaning of life, for fuck’s sake. Come on!!
JN
consider checking folate as well.
Wow, your body temperatures have been quite low. Based on these alone, and the fact that they dropped when you crashed, you should continue to experience a huge improvement from treating for Wilson’s. My temps have been averaging 36.5C, which is not that low relative to yours but still well below the 37.1C that is considered normal. I have not read about Ferritin and its effect on metabolism before so thanks for mentioning this. I will deffinitely go do some reading on it.
All I can say is that you are a soldier man, and your willingness to keep us in the loop on your progress, has been invaluable to unravelling the mysteries of the havoc that this drug has caused us. I am convinced that we will all get better.
With regards to the proper dose required to treat Wilson’s, below is a treatment protocol used by a doctor in South Africa to treat Wilson’s syndrome. I have no firsthand experience with it so i cannot comment on its effectiveness:
Where did you get that from? Can you cite a source for your claim?
How about:
Supplementing T3 will increase your AR levels, as I have previously stated in this thread. Which is somewhat equivalent to supplementing androgens, minus the estrogenic effects. Just like androgens, raising AR levels will stop working after a while. Doesn’t this (finally) ring any bells?
We’ll just have to see what happens, i hope this is the answer. Clearly T3 can have other effects on the AR receptor.
Awor,
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No I cannot cite my source. I have read varying laymen reports as to how long it takes to clear rt3. Whether it’s 6 weeks or 12 weeks or 76 days, I’m not bothered.
-
What do you mean ‘Does it ring any bells’?? You’re like a broken record, stuck on ‘Androgen receptors’. You have simply entered ‘t3’ and ‘androgen receptor’ into a medical search engine and churned out a reasonably interesting article on how t3 may double androgen receptors. You’re simply trying to shoehorn your ‘Androgen Receptor theory’ into any good going discovery out there. It’s getting a bit tedious now, particularly as you give no real ideas of exact management yourself, which is a shame.
Your main implication is that, in our exclusive group (ie) of Propecia sufferers, our androgen receptors have been permanently deranged.
RSA and MartinM give more likely explanations.
How about you stop repeating the same tedious theory and go and get a full thyroid panel including rt3 done? I don’t mean to personally attack you, but the whole cortisol/stress/rt3 increased theory is much more likely to be TRUE than your unfounded permanent AR desentisitisation claim. And, I’m pretty thankful about this, because, if life was up to you we all may as well turn off the lights and go home.
I repeat there is ample evidence and opportunity to work on this rt3 issues.
JN
Just read part of a story on a guy (his handle is ‘anyman’) that took propecia for a brief period 7-8 years prior to paxil/wellbutrin.
This poor guy tried everything… treated by Shippen, as well. Seemed to get over the hump with thyroid treatment… that can be read near the bottom of this page:
anabolicminds.com/forum/male-ant … al-10.html
I too have low temperatures since I started checking the last few days. I started a herbal adrenal/thyroid support and just got himalayan liver care/liv.52, which seems to be popular with bodybuilders.
If you would have bothered reading the scientific material that I have posted, you would have seen that rT3 clears out at 76 litres per day, meaning it clears out in a matter of hours, not days or even weeks. In other words what you are proposing doesn’t make sense.
As for the rest, at least I am consistent. But for now I’ll just let you get on with your “Theory du Jour” and won’t bother your thread any longer.
[/quote]
If you would have bothered reading the scientific material that I have posted, you would have seen that rT3 clears out at 76 litres per day, meaning it clears out in a matter of hours, not days or even weeks. In other words what you are proposing doesn’t make sense…
[/quote]
This absolutely wrong, full stop. RT3 has a half life of only a few hours, but as long as there is any T4 in your body your body WILL produce RT3 from that T4. As T4 has a half life of 6 or 7 days, there will be RT3 in your body for up to 12 weeks, depending on a few other factors (how suppressed your thyroid is, how much T4 remains in tissues for how long etc.)
This is why the cure for RT3 is T3 only-- as long as any T4 exists naturally or as long as you are putting any type of T4 in(synthetic T4, desiccated thyroid, synthetic T4/T3 mix etc) your body will continue producing RT3.
Yes, if you could kindly never bother my thread again, I’d appreciate it very much. Thanks.
JN
Yes I agree,we are closing in on the possible cure here,we don’t need any distractions on some androgen theory that is clearly wrong.