I had a very interesting email exchange with a Nobel Peace Prize winning endocrinologist. Long story. He noted that based on my description of symptoms and my combo of elevated rT3, slightly elevated TPOab, and consistently log FT3, that combination is known as Non-Thyroidal Illness. He said my TYPE 1 history (I've had Type 1 diabetes since age 5, I'm now 38), that that combination of labs is quite common as is the NTI is such presenting patients.
He stated that there is no agreement in whether people who have NTI should or shouldn't be treated with thyroid medication. Needless to say, I feel defeated. It's like they can tell me what it's NOT, but no one has told me what these symptoms and labs are. I'm not going to just take these symptoms and lay down. I can't. I have life to live. I figure if my FT3 is as low as it is, I'll take my chances with the NDT and see whether it helps. Because the not doing anything protocol, I can't....not with strong symptoms like what I have been having.
Have you heard of NTI? What do you think??
Thank you all. Seriously, you all have been the ONLY source of empathy and actual help. And I have the utmost respect for all of you. Thank you.....
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Nonthyroidal illness is what it says on the can. You have diabetes; however to get a serious NTI with that you would be very ill indeed. NTI is accompanied by lowered FT3 and raised rT3 but. in reverse, it does not necessarily mean that low FT3 is caused by NTI in any one case. Also remember that diabetes can be an autoimmune condition and therefore your chances of getting another e.g. thyroid auotimmune disease, are raised. Signs and symptoms may help - a good one is loss of the outer third of the eyebrows; roughened face skin, intolerance to cold, hair lanky and lifeless. If you have these then that is not likely to be NTI but a thyroid condition. I'd try T4 to see if it helps your condition and raises FT3. If it doesn't and simply elevates your rT3 even more then NTI is more likely
Hi Diogenes, thank you for your reply. Yeah, I almost wished I hadn't written him bc it's made me more confused, BUT he presents a good point: I don't have diabetes but I have TYPE 1, which is particularly autoimmune and nearly all incidences have elevated rT3 with low FT3. I'd read thy before when I was young, but remembers when he noted that in his emailed reply.
I stayed up last night thinking it over. My iron is low. My iron panel (TIBC, saturation, serum, ferritin) is eh. I have endometriosis so I lose a LOT of blood and have been for years. It makes me very tired. The confusion for me is that low iron mimics nearly all of the 300 or so hypothyroid symptoms, and also causes thyroidism, poor conversion, or can be caused by thyroidism or poor conversion. Complex.
I am going to ask my current treating doctor to do an IV infusion of iron and see if by improving iron, I might better convert, thereby relaxing many of the symptoms. So even if I still have thyroid trouble, I'll habeba better chance of conversion. And maybe the coffee/rushed sensation from the NDT will improve.
I went through my symptom list, like how you mentioned the eyebrow loss, and the other symptoms, and considered which of my symptoms are hallmark hypothyroid. But they all overlap with iron deficientcy. It's kind of a chicken before the egg puzzle.
I'm just thinking out loud of you don't mind, but if I take the t4 only, since I cannot convert well, I'm not sure what would happen. If I keep taking the NDT, even if I didn't keep titrating up, this coffee/running feeling, may blow out my adrenals.
He did mention that NTI isn't agreed upon in treatment. Now I see why.
I'm completely CK going to write down your kind suggestion. But I think I'm going to ask for the iron help, and then go from there... if you think of anything anything at all, more, please let me know. I'm open to all ideas and thoughts and I appreciate you.
Have you ever done a saliva test for cortisol? It's a far better test than a single blood test done in the morning, and can highlight problems before things get to the stage of Addison's Disease or Cushing's Syndrome.
Having unhealthy (too high or too low) levels of cortisol can cause high rT3.
Hi humanbean. Thank you for your reply. Yes, I've done a 24hour cortisol. I did one a few months ago....it's just confusing. Even there, I'm right on the edge in results, so no one knows, it seems like.
I know in the last few days I wake up feeling like I've had too much coffee. But I don't feel as "down" as when I did when starting the NDT a few weeks ago. I'm starting to think if I got an iron infusion (my iron is low) would I see a difference, and hold off on taking NDT - but now I've been taking it and tititrating up these few weeks, so I'm afraid to stop taking it.
It seems like no one knows. These are my saliva readings:
Steph, are the ranges for those also at the times you took the sample? If not, they aren't very helpful, are they? I think they follow some type of circadian rhythm.
If you would like, I have for privacy, redacted the researcher/doctor's name and identifying descriptions, but here is the email reply if you would like to see his explanation to my question regarding my low FT3, elevated rT3, and very slightly elevated antibodies. I've been responding, since going up to 1.25g of Nature Throid, with a fluttering/coffee/rushed feeling. I also have low iron. So this is concerning for me, making me think I should do an iron infusion and then see whether the thyroid and my symptoms respond favorably. Iron deficit can cause low thyroid function and low thyroid function can cause low iron. So it's all a guess it seems...Here's the emai reply sections in question:
********
.....The combination of low T3 and high rT3 is not due to a thyroid illness but rather to many forms of chronic illnesses including Type 1 diabetes. As a matter of fact this combination of test abnormalities is referred to as “non-thyroidal illness” or NTI. Currently there is no agreement as to whether NTI should or should not be treated with thyroid hormone.
Regarding thyroid antibodies, they indicate the presence of autoimmunity that is more common in Type 1 diabetics. Irrespective of the actual level of thyroid related antibodies (TPO and TG), they have no direct effect on the function of the thyroid gland and do not require treatment...."
Hashimoto's is highly likely if you have Type One Diabetes, as is Coeliac Disease.
Both my boys have Type One Diabetes - One has Coeliac Disease, both have Hashimoto's ( not treated yet)
Both also have Addison's Disease & Pernicious Anaemia. I have everything ( plus some extras) excluding Type One Diabetes
I not quite clear where you are in treatment re Hypothyroidism - however - I would look more at the Adrenals. It is dangerous to treat thyroid if there is a risk Adrenals not working correctly or on the way out.
Addison's disease is extremely hardcore condition. People die through lack of diagnosis.
I do think that Cortisol blood tests are of great use. Plus they are the only way to truly diagnose adrenal problems. BUT how you undertake them is super important.
You can get home finger prick cortisol blood tests - £39 each sadly.
You must do at 9am - THIS IS THE IMPORTANT PART. You MUST when you do it be cool as a cucumber & zero stress levels. If you are stressed - rushing to do , rushing to take children to school etc then YOU WILL spike your own cortisol level upwards thereby giving a false result.
If you can afford, then do additional cortisol tests during the day but 9am is the most important to start with. Don't worry about overnight ones at the minute.
Ignore what they say the range is when you get the results but contact me & I will help you read result. My boys have had many 24 hour cortisol blood tests & synacthen tests. Many Endo's are unable to give sensible readings of their own results.
Oh & I forgot to mention - do read up about Iron Infusion & ask to read the packet details & quiz medical team ( who actually do the procedure- not the doctor prescribing ).
This is not as simple as it sounds - risk of anaphylactic type shock.
820pm Evening 2.44mmol/L (1.8 - 12; optimal range 4-8)
1130pm Night 2.96mm/L (0.9 - 9.2; optimal range 2 -6)
I have the same question about your results as Heloise above. Was the timing of taking the samples as dictated by the test supplier? Or are they just the times you decided to do them? I've never seen a test where someone did the first sample at 4.30am before, and I'm wondering if the reference range you have applies to results at 4.30am. The kit I've personally used for this test tells patients to get up between 6am - 8am and then take the first sample an hour after getting up. I appreciate that tests and timings and ranges will differ from company to company.
The other problem is the two sets of ranges - the standard and the optimal. I'm always dubious about optimal ranges when I don't know who decided what was optimal and how they decided? The patients or some mathematical algorithm based on results from a mixture of sick and healthy people? But then I always have queries about reference ranges and optimal ranges unless I have read feedback from patients that they actually work. I'll check the results against both sets of ranges and see what pops out.
If I compare your results against the standard reference ranges first :
Sample 1 : Optimal result = 40.2 --- Your result = 12.01 = 30% of optimal
Sample 2 : Optimal result = 12.3 --- Your result = 13.26 = 108% of optimal
Sample 3 : Optimal result = 6.9 --- Your result = 2.44 = 35% of optimal
Sample 4 : Optimal result = 0.9 --- Your result = 2.96 = 329% of optimal
Totals : Optimal = 60.3 --- Your total = 30.67 = 51% of optimal
.
If I compare your results against the optimal reference ranges :
Sample 1 : Optimal result = 35 --- Your result = 12.01 = 34% of optimal
Sample 2 : Optimal result = 10.5 --- Your result = 13.26 = 126% of optimal
Sample 3 : Optimal result = 6 --- Your result = 2.44 = 41% of optimal
Sample 4 : Optimal result = 2 --- Your result = 2.96 = 148% of optimal
Totals : Optimal = 53.5 --- Your total = 30.67 = 57% of optimal
.
Whichever set of ranges is used, the individual results aren't wildly different between the standard and optimal ranges you've been given, except for the bedtime result. The total results really highlight the fact that you ought to be producing double , or close to double, the total cortisol you should be each day. Your adrenals need help.
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One good thing is your DHEA. It hasn't started dropping yet. Pregnenolone is a precursor to both cortisol and DHEA. When the body really struggles to produce enough cortisol it starts to cut back on making DHEA so that it has the raw ingredients it needs to make cortisol. DHEA is the precursor to making lots of your sex hormones, and the body considers cortisol to be far more important than DHEA. So the sex hormones start to reduce and that can have loads of knock-on effects. A good video explaining this (it's very short) is this one :
In the blue banner near the top of the page click on each of the subjects to the right of the telephone number for lots of articles on the subject of adrenal fatigue.
1) You need lots and lots of vitamin C. Your adrenals will love it. Spread out the dose throughout the day. If you buy vitamin C powders, drink through a straw and rinse your mouth out thoroughly with plain water. Since acids soften the enamel, delay brushing your teeth for 30 minutes to give your enamel time to harden up again.
2) You also need good levels of many other nutrients. Do searches for "nutrients for adrenal fatigue" and decide which ones are appropriate for you.
3) You will probably benefit from taking an adrenal glandular. Any that are made from whole adrenal glands are probably best avoided because they will contain adrenaline. Go for cortex only. The brand often mentioned on this forum is Adrenavive, but there are plenty of others. Make use of Amazon to read reviews.
I've never needed to use these products so know very little about them. I know that they mustn't be taken after 1pm because they can disturb sleep. I don't know how long you should take them for or when you should wean off them.
4) Look up adaptogens and try some that appeal to you. Be aware that some of them can raise blood pressure, so if you don't have a blood pressure monitor you might want to buy one. Something I find weird, is that people with low cortisol say that adaptogens will help to raise their cortisol, and people with high cortisol say that adaptogens help to lower their cortisol. I have never understood how a single substance can have opposite effects in different bodies.
5) Don't add lots of new supplements at once. Add one a week, so that you know whether something is helping or making things worse.
6) If you take T3 (or start taking it in future) you may want to read about its effects on the adrenals. For people with very low cortisol there is the CT3M - Circadian T3 Method - devised by Paul Robinson. Read his website here :
HB, what a wonderful comprehensive response. You must be a math whiz. I just watched the video by Dr. Walsh. The example of the woman on Synthroid was astounding in its definition of terrible results and not necessarily thyroid results. Vitamin A deficiency is rarely brought out. Thanks for all the information you collected.
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