Have posted here several times before and I am honestly at a loss as to what to do.
I developed hypo symptoms most annoying being facial myxedema 18 months ago. Thyroid labs were always wnl.
I am now on 360 mcg T3 only and no changes.
What the heck to I do? I am likely resistant but why I don't know. I am tempted to just find out at what dose I become hyper and take a little less to see if it makes a difference. Likely not the most scientifically sound thing to do but I am depressed about this and cant spend hours a day looking up possible causes anymore. Any help would be great.
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suzannai
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Suzzanai, I think your problems are outside most people's experience and competence. If you're taking 360mcg T3 without hyper symptoms I think you surely must have resistance to thyroid hormone but I have no idea how you overcome it. Sandy12 has researched THR extensively. Have you had any contact with her (I think, her).
Thanks Clutter, much appreciated. I did correspond with Sandy some time ago. I am here and on other forums as I am looking for help. I clearly respect that this is an unusual case, but I have not been able to find answers anywhere and am hopeful that someone somewhere along the line may have had a similar experience.
suzannai, yours is a tough one. I'm not sure if I've already given you these links. The first is Thyroid Manager for some reading. Dr. Samuel Refetoff MD wrote this chapter and is one of the early researchers (1967) in the field. You can do a search on PubMed using his name for more papers or just put in 'thyroid hormone resistance'. thyroidmanager.org/chapter/...
I know you are tired of researching but it is still necessary.
In the UK Sandy (a he) said this place does a lot of research into the subject.
They might have some good ideas or they might be useless, I have no idea, but at least they should be familiar with the subject and its difficulties. Although I have done a lot of reading on the subject it is a tricky business and there are some very unusual situations involved, yours for example. This is Dr. Refetoff's web page at the Univ of Chicago. It has his info and an email address. You might email him and explain your situation and see if he has any comments. They also maintain a referral center and you could ask who he would suggest in the UK.
I would suggest the same approach at Addenbrookes, establish contact and see if anyone can talk to you. It would probably be best to talk with someone who at least has an understanding of what you are dealing with, most doctors will be useless. This isn't much but I'm afraid it is all I have at the moment. Please keep us informed of what happens. I do remember reading a patient story saying they were taking close to 500mcg without any hyper symptoms but at your dose, and up, these are very unusual situations and need to be closely checked. Keep in mind that they might not have all the answers but at least you would be dealing with someone who has familiarity with the subject and won't necessarily freak out at your dose level. PR
"Together with the Department of Clinical Biochemistry at Addenbrooke’s, we provide a Supra-Regional Assay Service for the investigation of Resistance to Thyroid Hormone (RTH) and other unusual thyroid disorders."
Thanks for you sincerely kind reply. I will look into these links certainly and without question.
I am familiar with Dr Lowe's work and my case is more likely close to what he experienced with his patients than what they may see in what is typical clinical thyroid resistance. I presented with normal TSH, T3 and T4 initially but severe hypothyroid symptoms (the classic is the myxedema, it cant be anything else). I know the reported cases of THR usually have a high TSH.
There is a clear issue with transport/utilization at the cellular level and I have looked at Vitamin D and A and am supplementing with both to help with nuclear receptor transcription. I am taking Bs, B12 injections, zinc. It is very odd, as all this happened after a stressful event. I wonder if at that time I could have become hyper and the receptors shut down in response. Either way, I desperately need to find a solution. Clearly my TSH is very suppressed and my T3 is high, but I do feel somewhat better to know that there are others who have taken as high a dose or higher, Even the one doctor that has agreed to treat me has exclaimed that she is worried about losing her license due to the high dose I am taking. Honestly, I take it one hour before bed an fall asleep no problem so there are no hyper symptoms here
suzanni, I presented the same way, perfectly normal TFTs. I never had an abnormal TFT until I was on 1 grain NDT and at that point I started to bury the TSH. Even at about 30% low on T4 and T3 all my blood tests were normal. I did a 24 hour urine test through Dr. Jacques Hertoghe's clinic in Belgium and that is what finally showed the low levels. None of the docs I saw believed the 24 hour urine test. I have what I think is a mild form of resistance, 4 grains and I'm fine. Both parents were hypo so it is probably genetic and didn't develop until my adult years. Those of us that are outliers have a more difficult time with doctors, most have little time or patience for the challenging cases. It cost me 12 years of my life but I was able to get back to 'normal' by being persistent. Don't give up.
PR, interesting that simply one grain of NDT sank the TSH. My doctor is concerned about how low it is. I do think there may be something in the family. My father has classic hypothyroid face aswell and looks very different than he did when he was younger or even a decade ago; similar to me. Puffy cheeks, enlarged nose and chin. His thyroid checks out fine aswell. He too has had a stressful difficult go of things in his life. So maybe there is something to this. I have read Mark Starr's book which deals with Type 2 Hypothyroidism; peripheral resistance. This is certainly what I have but I don't and cant figure out why; stress, nutritional deficiencies, hormones, metals. I am trying to treat all of them but honestly am so tired of it and have supplement fatigue. I was diagnosed with a mild mitochondrial cytopathy which becomes chicken or egg conundrum. I have read that if the mitochondria don't work then T3 cant be used effectively but I have also read the reverse that if the T3 isn't getting into the cells the mitochondria become impaired. Hence the elevated CK levels that I have. I just wish I could pinpoint the problem and treat it aggressively, instead of all this trial and error. none of which is helping sadly.
can I also ask why you chose NDT and not T3 only. I have considered NDT but I think it made me more tired and became concerned about possibly having the T4 convert to reverse T3 and not T3. maybe I need to take both.
T3 only is usually the last choice because it is more complicated dosing. Both my mother and sister did not get along with T4 monotherapy so when it became my turn I skipped that and started with NDT which has worked for all of us. It is tricky trying to figure out exactly where the glitch is. Even with genetic testing they have only identified about 170 or so problems, probably just a start I'd say. Science really knows very little about us at this point. Dr. Myhill helped develop a test for mitochondrial function. It is available in the UK but not the US I believe.
I understand the supplement fatigue. I'm afraid a lot of this is just plain trial and error, trying to figure out what improves the situation. I don't worry about the blood tests, they have never related to what is actually happening in my body. My TSH has been buried for 25 years and my FT3 is over the top of the range. Those results are actually similar to the results you get when using T3 only. I've never had any hyper symptoms. PR
Thanks for this PR4NOW. I will look into the testing. I do think that somewhere along the multiple pathways needed for thyroid hormone to enter the cell, its work in the cystol, and binding to TRE and transcription effects, there is a glitch somewhere. God only knows where and I don't know if there is any testing to look at this. I am hopeful that if it is simply a nutritional deficiency (Coq10, etc) that I will somehow obtain some relief. I hate to be vain, but I can deal with most of the annoying symptoms but the myxedema is awful and affects my quality of life insofar as not wanting to go out into the world and socialize. I will look at Dr Myhill's testing and see if it is a) applicable to my case and b) available in the USA, and if not, if there is any way to obtain the test from the UK. Thanks again.
Also, I do feel like there is so much trial and error with the dosing. With suspected resistance, I initially doses several times per day and then went to one large dose per day. Neither one seems to make any bit of difference. I am so tempted to see how high I can go, just to see at what point I induce hyper symptoms, just to know that it is possible to get the T3 into the cells.
That is tricky at that high a dose. Personally I'd want to have some beta blockers on hand. It is hard to tell if you would get a mild increase into hyper land or a landslide. PR
agreed that having some BB on hand would be beneficial. I only have capsules and they cant be opened so I would increase at 45 mcg increments. T3 has a short half life however and I am in Canada right now so I would be covered by health care should anything go awry. I am also wondering if it is possible that my compounded T3 is just not strong enough. My labs show high Ft3 and suppressed TSH so I am assuming it is working insofar as it is being absorbed.
Ah, so you are in the US? If you are on the east or west coast there are some possible good docs around. I'm in Omaha, two medical schools but I go to Phoenix once a year so I can get an intelligent conversation. PR
PR4NOW, I am Canadian but truly exhausted the medical community here and hit a dead end so went to Alabama and found a DO there willing to rx T3. She knows little about resistance however so she is writing the scripts and I am doing the research. Not ideal, but better than nothing. Who are you dealing with in Phoenix? how has your experience been and have you had to address other issues other than the thyroid hormones for the hormones themselves to be more effective?
What I really want is some sort of testing to figure out what is the problem here. I have KPU (low zinc and P5p, high copper), low progesterone, high lead, so we are dealing with these but how they affect the T3 uptake and utilization is only speculative for now. it really is trial and error and frankly that part is tiring.
Zinc and copper are both involved in the thyroid cycle. Shou-Ching Jaminet had a thing with her copper balance that caused problems. Somewhere on the site they mention that.
High lead isn't good, hopefully detoxing will be helpful. Low progesterone also isn't good, you need the correct ratio. Have you gone to a paleo style diet? That often is a good foundation for positive change. I see an NMD in Phoenix who is a bright mind. Quite often they have a broader outlook then MDs. I also had to do adrenal supplementation to get back to normal but that was 25 years ago, that is what they knew then. Now I would try Paul Robinson's CT3M. Stress in the modern age is responsible for many health problems. Of course trying to find a solution to difficult imbalances usually doesn't help that. I don't know if it will help but you might find this young lady's story of interest. She is in British Columbia. thyroidresistance.com/
The other problem is it is easy to go broke trying to get healthy. PR
I will look at those links and see if they offer any insights into my case. I did originally try Paul Robinson's protocol when I started T3. I was on the FB page but was not following his protocol on how to increase (small increments only every 3 weeks or so). He was not happy about that, and I do understand, but had I stuck with his method of titrating, I would never have reached 360 mcg. Either way, our issues are different, Paul became very hyper and intolerant to his thyroid replacement, my issue is the opposite. I do need to treat adrenals but am a bit stumped as to how, Previously when I was under a lot of stress and when symptoms began, blood and urine showed high cortisol enough to prompt rule out of cushings and pheochromocytoma. Saliva shows all within range, however low, low, high, high-ish but in the normal ranges. last test for that was in May. I also wonder again if when I take the T3 makes a difference, Have played around with am dosing and just before bed.
Good testing is useful but finding someone who understands how it all fits together is even more useful. I think very few have the answers off the top of their heads, you need a good trouble shooter to help you work through the issues one by one. Have you tested for MTHFR? I wonder if you are having problems in the methylation cycle. Underlying infections? Lyme, Epstein Barr? The stress event is usually just the trigger. PR
I tested positive for hetero C66T so am not taking 2 mg MTHF. I could very well be that there is an issue with methylation. EBV positive but I think from a previous infection when I was young (Dr said not to worry as 80 % of ppl have abs). As for Lyme, it has recommended numerous times. I don't have acute symptoms or even really chronic symptoms of Lyme disease. If I could better understand how it would cause thyroid resistance I would be much more likely to shell out the $500 for it. To be honest, I have spent every penny on this, have left my job and am borrowing money so it has to be well spent.
Well, given that you don't seem to have any obvious signs for Lyme or EB I would do a paleo style diet for the foundation and continue the detox to see if that helps. If I can think of anything intelligent to add I will respond. Don't give up. I would email Dr. Refetoff and see if he has any ideas. PR
Lyme seems a bit far fetched to me, but if all else fails I will look to test but would rather use my resources elsewhere for now I think but it may be good to rule it out. I do need to switch to paleo I think and the metals need to come out regardless of what they are contributing to thyroid resistance as long term they are not a good thing. I did email Dr. Refetoff and hopefully will hear back from him.
Thanks for this. I am using magnesium and adrenal support but likely need to take more of both. I am also taking B vitamins for the adrenals separately.
I am assuming that the T3 is doing nothing to alleviate your problems? So I would say stop fraying your poor GP's nerves and stop taking the stuff.
And then, since it all started with a stressful event, I would look closely at your adrenals - get a saliva test done, look at mineral status, especially magnesium (notoriously difficult, but hair analysis is probably the best approach).
If you are T3 resistant then throwing more at the problem is only likely to exacerbate it.
And personally I would suggest seeing a homoeopath. Homeopathy works in a different way, and may reach the parts other hormones cannot reach!
The T3 is not working, yes that is true. However is it at all possible that I need a higher dose? I have read some need up to 500 mcg of T3. Not sure whether to keep going on it or stop altogether. Of course, the fear is that the facial puffiness and other symptoms get worse if I stop. so I am hesitant. My saliva test was performed and the results are posted below. This was preT3. However, previous to this, blood and urine tests did show high cortisol but my last blood test a few weeks ago was normal or within range and much lower than it was previously. I am working with a DO and ND to address this but of course they are also stumped. we are working on other things; hormones, progesterone, nutrients, heavy metals aswell. My question is; how the high dose T3 will exacerbate the resistance. I thought that it would overcome it if the dose got high enough (dr Lowes theory). THanks and the cortisol is here:
I didn't think it was too bad either PR4NOW. However others on FB groups for adrenals do think it is too low and too high at later times in the day. Had I measured the saliva for cortisol during my stressful period I am sure it would have been higher, and I wonder with the high cortisol at that time, whether that made the receptors resistant to thyroid hormone. Either way, the question still remains, how to overcome it.
Dr. Alan Jacobs in NYC. I have the same problem as you. I'm am on 350 mcg Cytomel and going up (along w beta blockers). I hope that it resolves my swelling and dryness. Other symptoms are resolving. Swelling goes down as I go up. Better to take in 2-3 does a day because larger doses seem to bombard the cells. mood is better and have more energy and lost all extra weight in like 2 weeks.
Suzannai, has your facial swelling resolved? As I am going through this and slowly goung up on the t3 I am very anxious to know your outcome.
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