Not sure how to proceed, new test results

Saw my endo today. He was as unhelpful as I thought he'd be. Not much collaboration. He def sees me as a blood test, and says I just need time to work through this. I spent 10 years wasting time w/doctors on my adrenal gland, I don't want to do the same w/my thyroid.

So here are my latest results. I am taking 75 Levo and 10mg HC every morning. He tested regular T3 rather than Free T3, and he said it dIdn't matter, it's all the same. Is that true?

I still feel generally unwell, so I just don't know what to do. I feel maybe I should try 100 T4 instead of 75.

I asked him about a combo, or NDT, and he said no. Says he sees 1000's of patients and they do well on T4. I just kept a straight face and didn't bother to say otherwise. Would be pointless with him.

T4,Free(Direct) 1.19 Range: 0.82-1.77 ng/dL

Triiodothyronine (T3) 110 Range: 71-180

TSH0.577Range 0.450-4.500

Thyroid Peroxidase

(Tpo) Ab >600Range 0-34

ACTH74.5 HRange 7.2-63.3

Cortisol, am11.7 (no range but it’s mid-mark)

Thank you in advance,

Marsha

55 Replies

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  • Your dose may be too low for you. Previously, before blood test, we were given sufficient NDT for us to feel better and the regular dose was 200 to 400mcg.

    This is a website and go to the date February 17, 2008 and April 22, 2007 to read the question/answer.

    web.archive.org/web/2010103...

    Synthroid is levothyroxine in the USA.

    Just because many people do o.k. on levothyroxine - some might just be continually unwell with doctors saying exactly the same of your Endo.

    The fact that they are unwilling to listen to the patient and be dictatorial is not good for us who don't feel well, despite taking levothyroxine. In fact I felt much worse than before my diagnosis of TSH 100. You might have to take your health into your own hands.

  • Have you tried dietary changes? This is a good article abou food sensitivities, although the only reliable way to find out if you have them is an elimination diet:

    thyroidpharmacist.com/artic...

  • No, free T3 measures the amount available to the cells, most T3 in the Total T3 test is bound up in such a way as to be inaccessible.

    If his definition of doing well on Levo is that their test results look OK to him then it's probably true that most of his patients do well. And if they say they feel unwell they are liars. What a w****r!

    One day they will speak of early 21st century endocrinology in the same way as they do now of leeches.

    You could try raising Levo, or try NDT, either way it will probably only happen if you self test and self medicate. We are here for you if you decide to go that route.

  • They speak very highly of leeches in some places:

    biopharm-leeches.com/

    :-)

    It is hard to imagine anyone ever speaking highly of late 20th/early 21st century endocrinology at least with respect to thyroid.

  • Thank you very much. I am going to make another visit with the integrative doctor. She is actually one of the doctors who co-wrote the STTM book. I didn't know that until my husband bought the book for me and he said look, there's the doctor you've seen. She is very open to things. But she was hesitant to put me on NDT just yet. She said because I'm Hashimoto's, it could increase antibodies and I may not respond well. She told me to stay on the 75mg and lets see how I do. Well, I don't do great. She doesn't know this though because I haven't made another appt. I'm def going to give them a call on Monday to make a follow up.

    This morning I upped my Levo to 100, 10mg Cortisol. To me, it looks like all my numbers could use a boost.

    He also failed to recognize my ACTH to Cortisol. ACTH is to adrenals, the same that TSH is to thyroid. My ACTH is high. High ACTH should equal higher cortisol output. Evidently, my remaining adrenal gland is not responding to it's request. It's a good thing I began to supplement a dose in the morning. He OTOH wants me to taper to 7.5. Makes no sense to me whatsoever. He should rather want me to stay at 10 w/an add'l afternoon dose. These numbers say I'm adrenal insufficient.

    Yes, I thought Free T3 was the better test showing what is usable. I am quite disgusted driving out of my way to go to Johns Hopkins (a 2 hour drive) and being treated like a blood test. This is like the typical preamble to most books on thyroid problems, Dr's not recognizing the human personality sitting in front of them, only the blood test.

    Thank you for the info.

    Marsha

  • Dump him and find an endo that has a speciality in thyroid rather than diabetes.

  • Most people DON'T do well on levo as this is T4 alone, but doctors have a vested interest in it.

  • Do you have any evidence for that statement, Glynisrose? Because if you do I would very much like to see it.

    My experience is that most feel fine on Levo, albeit maybe not perfect, but what can you expect when an important part of your endocrine system stops working? . Most active members of this board aren't fine, of course, but we are a self selected group.

    I think it's very unkind to make such statements which are then seen by all the newly diagnosed folk who rock up here, hopefully never to be seen again because they are OK on their levo. Don't give them the impression that they won't be.

  • I think the evidence is quite extraordinary. The proof comes from just looking at all the people convening on the internet to complain of not feeling well, and usually they're on T4 only. Look at all the books written about this very subject. There are people who advocate against T4 only, and do so because they were once in the shoes of those still feeling unwell on T4. It's like an old song. It's quite obvious many people aren't doing well on T4. Some do, but then it falls to the wayside maybe just a year later, or 5 or 10, doesn't matter, it's the same outcome, T4 only treatment isn't the gold standard as the mainstream medicine says. I myself am living proof of that as well.

    But I do understand what you're saying. But I highly doubt that if anyone is doing well on T4 only, they would not be searching for help on the internet.

    But thank you for pointing out another angle.

  • But, marvalrus, its important to understand that although there are loads of us, and books written, and anecdotal proof that almost any diet will cure a few, it does not mean that the majority fare badly. I have seen various figures quoted, but it seems generally accepted that around 10% don't do terribly well on T4 only. But in the majority of those cases they would do much better on a higher dose, and don't necessarily need anything else. Even the late great Dr Skinner reckoned most did fine on T4 only.

    Me, I never did well on Levo, and after months of increasing doses with no change in symptoms, I started on T3 (felt fab for 24 hours, until the side effects hit me) and then NDT.

  • As we age we produce less T3 and so levo is useless long term, that is a fact. Most endos are diabetes specialists as there is no 'glory' in the treatment of UAT. I have no written evidence but would stand by everything I have said regardless. GPs get paid to prescribe certain drugs and they also get £50 per person if they persuade you that you need to come to a clinic held at the surgery.

  • I have seen no evidence that healthy people produce less T3 as they age, only that, as with almost any other disease, incidence of thyroid disease increases with age. Its also a huge, illogical and unscientific, leap to say that therefore T4 doesn't work.

    But I agree that UAT isn't sexy, because there is little money in the drugs (someone who persuaded docs to prescribe T3 or NDT could make lots though, so why don't they try?). Whereas the diabetes industry is huge and lucrative, and therefore throws lots of 'training' and propaganda at the medics.

    I have said it before, and will say it again. I think it does us no service to accuse our hard working and well-intentioned GPs of laziness or a lack of the will to provide good care. They, like everyone else, are the product of the paradigm within which they live and work.

  • Ruthi...Levothyroxine kept me ill for 7 years. It's fairly obvious to me that a body needs to replicate what it is no longer producing,and for me and millions of others,that is T1,T2,T3,T4,and Calcitonin that is in NDT...rather than the T4 in synthetic Levothyroxine. My family and friends cannot believe the difference in me these past months.There is no way I would ever take any symthetic replacement ever again...and I am not alone in this.

  • What brand do you take, Fr23? How much T4 were you taking before you switched over? Thank you.

  • All of that is why I take NDT too. But all I am saying is that just because we here didn't do well on Levo, does not mean it doesn't work well enough for the MAJORITY. We are the minority.

    And you can see that in theory giving the storage hormone, and allowing the body to convert it at the rate it needs is theoretically perfect. It only works if the body does do the necessary conversion, of course.

    Most people aren't brave enough to go it alone without their doctor's support. Its sad, but that is how it is. I just don't want to give all those people the impression that they will, without fail, be ill for the rest of their life. Most won't. Some will.

  • Go on a juicing diet for 3 weeks and you'll feel amazing. I've got hypothyroidism, Lupus and Sjogran's Syndrome. I became a vegan start of January and now I juice every day. It has changed my life. I feel so much better - all my aches and pains have gone, and I feel less tired. I'm having tests in April, so I'm looking forward to seeing how things are. But I now know that diet is everything. Doctors just give you medication instead of telling you the obvious. Autoimmune diseases can never be cured, but you'll feel so much better on a vegan diet, especially if you drink juices using raw fruits and vegetables. Try it! What have you got to lose?

  • you say autoimmune diseases can never be cured but i don't believe that to be true . Izabella Wentz who wrote her book on Hashi's is cured!

  • I came across this video online, she looks pretty well on it!

  • Autoimmune disease CAN be cured.

  • Well, if I am wrong, then that's great. But my point is trying a vegan diet and raw juicing using a home juicer. It has worked miracles on me.

  • Thank you for the suggestions. I am aware that diet is key. I keep hearing about this AIP diet (Auto-Immune Protocol) which is proving to be very helpful for most who try it. I am up and down w/my appetite, and right now it doesn't sound appealing to me. I'm too tired to think it through and do it. I do feel that proper medication is key. It's bewildering that dr.'s aren't more open to try other medications since they are out there, esp if the patient still feels ill.

  • I used to think the same as you, until I saw a film on Netflix called Fat, Sick and Nearly Dead about a man with an autoimmune disease who went on a juicing diet for 60 days (a bit drastic) and not only lost weight (he was quite overweight) but his symptoms are now completely gone, and he feels very healthy. A friend of mine who suffers from bad migraines also went on this diet and now has no headaches at all. So, I gave it a go, but only drink raw juice morning and evening and have a vegan solid meal at lunch. My skin has been transformed, I don't have arthritic pains anymore and I feel more energetic than I have done for a long time. I still take my medications, but will slowly reduce them if my doctor gives me the go-ahead. It's up to you, but there is no harm in trying. I know food is important to people, but surely feeling healthy should be more important.

  • LOL, I bought a juicer a few years ago and bought some produce to put in it. By the time I was able to make a small cup, everything was gone! I cleaned it up and returned it. I got a NutriBullet instead. We use that quite a bit. Tell me what you think about smoothies vs juicing. Thank you!

  • You need the right juicer as there are so many out there. I prefer juicing because I can juice Kale, Spinach, carrots, strawberries, blueberries, apples, fresh ginger, fresh turmeric and other varieties together, at the same time and have 7 or 8 fruits and veg in one large glass - it's full of goodness and you can just drink it up in seconds. I used to do smoothies, but juicing wins hands down.

  • I think I'll look for another juice. Smoothies do have a tendency to fill me up. Here's a funny ?, have you ever "juiced" coconut oil? : ) Like put in a carrot, cover it with Coconut oil, then shove in some kale, spinach, beet leaves, etc behind it? I sometime empty capsules of various vitamins or herbs in my smoothie, so I'm just wondering. Thank you. And what kind of juicer should I look for? I mean, I'm not going to buy one that is 3000 bucks. It's SO unreal a contraption such as a juicer has a price tag of that magnitude - I sometimes wonder if they prey on desperation, but I don't want to get a junky one that is not effective. Thanks!

  • I don't know, I agree with those who think most doctors don't care and ignore how nasty we feel. I've become debilitated from this and not one doctor seems to want to listen. I've tried Levo, didn't help at all. Labs all still normal and I can't barely function some days. I don't have a good day anymore. Switched to Armour and my doctor has me taking 15mg of the stuff, I'm under medicated because my doctor is playing it safe as he is shooting in the dark. I'm thinking of raising my dose myself and already did about three weeks ago to 30mg of Armour. Still no help. Took me four doctors to find one who would treat me based on symptoms. And even though he listens he doesn't know what he's doing with the meds. Anyone know if 30mg of Armour is under medicating? I know that can make dorm one feel worse and wonder if I should keep increasing my own dosage? Idk anymore. A lot of the symptoms of breathlessness and tingling have gone away but I'm always dizzy and my head feels like I've got a brain tumor but I don't. Kinda tired of always feeling like I'm disoriented and tired. The palpitations are more infrequent I am happy for that.

  • I know just how you feel. It wasn't until I added that 10mg of Cortef that the extreme pain and tiredness let up. Before that, by late afternoon my body began to turn into wood. I was in pain going down stairs (knees) and my shoulders hurt so bad. I felt like my body was attacking my joints. After I added the Cortef, it lighted my load, so I know Cortisol output is def part of the link for me in feeling well. There's a ton of info out there, websites and books, and there would be so many if T4 made you feel well. Most don't even care to check your iron, ferritin, D, B12, potassium, sodium, etc etc. Just T4 and it you don't feel well you have something else, and they have a pill for that too. Sigh...........

  • Hi FunnyGB, I would guess 30mg is under medicated (but post your blood tests here). I take 1.5 grains and I think a low average is 2 grains (that's 90mg and 120mg respectively). I'm afraid we have to self medicate, increase a little bit, take your basal temp and pulse every morning and increase or decrease accordingly. Most Endos don't have a clue about Thyroid care, they are considered "good" Endos because they are probably good at diabetes. Thyroid probs are a lot harder, and they just cannot put all of the variables together.

  • I am amazed at these doctors who look at records of a patient who has been struggling for a decade or more, and then come out with a line about "it's going to take time". They would be mad as hell if someone took 10 years off their life!

    T3 and FT3 are NOT the same! The whole point in testing FT3 is to take TBG out of the picture: free T3 is the portion of total T3 that is available to go into the cells and do good things.

    However, looking at your T3, it's clear you are somewhat low in the range. You would probably feel better if your T3 is in the upper half, and preferably the upper quarter, of the range. Your T4 could be higher, but if you are not converting well, that would not hike your T3 much, and it could have negative symptoms. I see this as a case where you could be helped quickly, by using NDT or taking supplemental T3. T3 is also helpful to the adrenals (look up T3CM, Paul Robinson).

    The other thing that is making you feel bad is high TPOAb. This doctor should suspect that you have gut problems, that you need to make dietary changes, that you need to be tested for food sensitivities, and you need to be tested for environmental problems like high heavy metals. He is clueless about environmental health, DUH.

  • Thank you so much for understanding how it just may feel to hear a doctor say 'this is going to take time" after ten years of being frustrated by doctors. Basically held prisoner when the have the key to unlock the door, so to speak, but won't.

    Thank you for the info on Free T3. I will def look up that link. I am going to make an appt with the other Dr first thing Monday morning. My main objective is to try something else.

    Are you saying to take NDT along w/T4? Like a mix of both, or just NDT? Or T4 along w/some T3? We talked about the combination T4/T3. She thought NDT might not be so great for me because of my high antibodies, but she did say if I wanted to try it, she would certainly be open to it.

    Thank you very much for your suggestions. I agree, my T3 and T4 are not very optimal. I raised my T4 to 100 today. I hope it helps.

    My last blood test in mid-Dec showed me to have High normal range Free T3, but high excess Free T4, and my TSH was too low. So this test shows things have leveled out, maybe in the normal range, but low normal. I hope this 100 helps. I was even thinking about alternating 75 one day, 100 the next? Do people do that?

    I really wish that we had test meters for thyroid like they do diabetics. Sure would be a lot easier. But then again, one has to keep in mind that symptoms lag behind the numbers...... A lot to keep in mind.

    Thanks again Eddie.

    Marsha

  • Of course I understand it. My life was screwed for about 21 years by MDs who never took responsibility. To the point that I had to do research and self-treatment.

    I am on T3+T4. In the past, I've been on T3-only. Some people claim NDT has magical properties because it also has T1, T2, and calcitonin in it. There has never been (and never will be) a double-blind study to prove that. So whether you use synthetics, or NDT plus synthetics, is a matter of personal belief and preference. I've come across patients taking synthetic T3 with NDT, and even a few patients taking synthetic T4 with NDT. From a first-order therapeutic point of view, think of NDT as being T3+T4 with a fixed T3:T4 ratio of 1:4. You have to take whatever makes you feel well, and (hopefully) produces good FT3 & FT4 numbers. If you take NDT and your FT3 goes too high, then reduce NDT a little and add some T4. If you take NDT and your FT4 gets high but your FT3 is lagging, then add some T3. Ultimately the correct dose is the dose where you both (1) feel calm and well, and (2) upping your dose just another 12mcg of T4 will give you hyper symptoms. When you shift your balance of T3 and T4, use the T3 power factor (which is between 3 and 4) to help you with dose.

    Keep those antibodies in mind. Not even acknowledging that reduction of antibodies is helpful, is one of the stupidest things that MDs do.

  • Besides GF, what is another way to lower these antibodies? I saw a chiro at one time. He does videos on dieting for your body type, either adrenal, liver or thyroid. He once said that if you take a supplement called PMG at bedtimes, thyroid antibodies would head towards the PMG and subsequently be flushed out through the intestines. I think some people know of this but I never hear of anyone using it.

    I understand what you're saying about finding the right recipe of thyroid medication. I must say after using T4 since Sept 2015 I've yet to feel good on it. I was very disappointed to see that my ab's were still very high, since I have been eating mostly GF. I guess there's a difference between mostly GF and total GF, but either way, I don't feel any different or better for any length of time. I have heard about this AIP diet that sounds very interesting, but I'm not mentally prepared for it. I need to read more about it.

    Thank you so much for your help.

    Marsha

  • A lot of people seem to swear on a stack of bibles, that the paleo autoimmune diet is the way to go. But whatever you do, if you find the right thing, it takes a lot of time. From the time I had a diagnosis, it took about 9 years to get well because the docs I saw had no clue that gut enteropathy could disrupt protein digestion. Though that seems like kind of an obvious conclusion now! Have you had the major food sensitivity tests? Ever seen a allergist, or an ND who has a reputation for treating Hashi's? I had to get verification of gut damage thru the testing offered by Dr. Kenny Fine - as I recall, at enterolab.com.

  • No, I've not had any food sensitivities tests done. I'd like to though. The one other doc I have seen, in-between this endo, is one of the co-author of STTM book. Went to see her for Hashimoto's but also tested me for lots of other things such as Lyme (1 bar registered #23) HHV6 and EBV both high, and some other "human" test I cannot remember. She's also mentioned mold, yet no mold in our house or anywhere I hang out. I'm not quite sure where she is going with me, but my initial appt was for THYROID. She might want to rule some things out, but I'd really like to focus on thyroid medication therapies.

    I do have one known food allergy, and that is red meat. Which is why I was tested for Lyme because red meat allergy was found to caused by tick bites. I'd really like her to just focus on my thyroid medication, try some new therapies.

    The Hashimoto's 411 FB page is loaded with people saying that AIP is really helping them. I have to get in the right frame of mind for it. My appetite is not that great and looking at that diet only makes my appetite worse. I went from Sept - Dec totally GF, then I just had to have morning biscuits w/honey. I find all the GF breads to be quite disgusting. I'd rather not eat bread but I doubt I can do this continuously for a long time. Plus it's hard to find it w/o soy, and the worst GF bread is the one w/o soy. Soy, from what I understand can limit T4 conversion.

    Do you know this to be true? Also, what about this PMG? Have you ever heard of anyone using it to lower antibodies? I will find the video (it's short) where this Chiro, Dr. Berg, talks about how to take it. I've actually gone to his office in the past for accupressure. Thank you for the info. I think I will get back on the GF, it wasn't that hard, and I think lower carbs is better for me anyway, seems to help my blood pressure too. Here's the video:

    Thanks for all your help.

  • i think you need a functional medicine doctor. They all routinely do stool testing, blood and saliva for food sensitivities and neurotransmitters..all about healing the gut. ndt made me very ill. I do not think very highly of sttm anyway.

  • I have two doctors, one is an endo and the other is an "integrative medicine' doctor. She is better than the endo. She is the one that told me I should try maybe a combo T3/T4 instead of NDT because my antibodies are so high. But I'll never know unless I try. I hear so many people say they do better on NDT than T4 only, and I've yet to feel good on T4 only, so I really want to try something different. I'm going to call and make an appt tomorrow. I still have a couple weeks for delivery, I hope I can see her before then. I appreciate your thoughts and thank you for sharing them. I understand what you're saying.

  • is that acth 74? If so your adrenal glands are not responding well at all! where you on HC at the time? It may be that you are improperly medicated.

  • Bingo. You're thinking exactly like me! This was a red alert in my eyes, yet my endo said this "We see a curve in ACTH output and I believe you're at the top of the curve right now, and I see this coming down in time" like he has some crystal ball. LOL, I just kinda looked at him with the "watchu talkin' bout Willis" look. I said, well I look at as if I'm adrenal insufficient. My brain is telling my adrenal gland to make more Cortisol and it's not. With that ACTH number my cortisol output should be higher. He's also telling me he wants me to taper, that I don't need 10. Can you believe this? I'm bewildered. My husband and I left that appointment highly frustrated. I mean, this is Johns Hopkins, well known for being investigative and really striving to do things that help people. I feel more like I'm some guinea pig!

    Yes, I've been taking 10mg every morning. The test was morning blood serum. He also told me Saliva 4 tube testing is highly inaccurate. That in order to really get an idea you'd have to do that test 5 days in a row. LOL...he really doesn't think outside the box is all I can say! I have one more appt with him in 8 weeks. After that, I'm done. Who knows, I may never go back to see him.

  • I totally get where you are coming from! My saliva is now low across the board and the endo's don't care about this tests at all. I really don'

    t know how valid it really is, since it is so ignored. I have a low acth and low cortisol. My endo number 4, missed this when i did an adrenal stim test and said it was normal..because they give you ACTH for the tests!! What an A Hole and they are all the same. Its terribly frightening isn't it? To be totally alone with an illness and no doctor to validate our symptoms or helps us..maybe not even believe us!!! I am always told my symptoms are from some other illness or from depression or anxiety. I have been ill for 8 years now. I am on t3 only, after being on levo, tirosint, and i tried ndt 3x, after sttm convinced me, it was the only way i would ever feel better and boy, did i get ill! Currently, I am doing an immune system healing protocol from a functional medicine doctor. I have to self treat the thyroid issues, because they all, even her, rely on those labs to determine proper medication and i believe they are dead wrong! I am praying to get rid of this horrible hashimotos..it has ruined 8 years of my life. Some time after 2009, my pituitary got damaged. I believe it was when i gained 30 lbs in 3 months..all fluid! My stomach shut down too. I was referred, by endo number 1, to the pituitary center in boston and have been too ill to travel. Now i have muscle pain and am to walk much, because my feet hurt so badly.

    The doctors are actually damaging to my emotional well being and i am not the same person because of this living in fear and alone, for so long. I bought a blood pressure cuff, a pulse oximeter for when my heart goes crazy and i get breathless. This way, i can keep myself out of the emergency rooms, where they send me away and refer me to a psychiatrists.

  • I am right there with you and know exactly how you feel. I almost feel we have something in common with the low cortisol. Are you taking any cortisol? I think that is what you need.

    The run around we can get from these endos is absolutely disgusting. They surely don't care, and I almost feel as if they do it on purpose, because money makes the world go 'round. What good are you if you feel good? I went 10 years with Zero ACTH yet I made 'some' Cortisol it was never high, but I had the symptoms of Cushing's. How does that happen? Finally after breaking down my cardiovascular and female hormone system, and now my thyroid, they finally listened to me and took out the adrenal gland that had an adenoma on the cortex. Yes, it was discovered on an MRI yet my GP said it was "normal'. Can you believe it? I had every symptom of an adrenal adenoma yet it's 'normal'. The straw that broke the camels back was when I went to the ER with an allergy. The EMT referred me to an endo and she said 'that thing' needs to come out! She was endo 3, I believe, and the only way JH would do the surgery was if I saw their endo. He's #4. 1,2, & 4 supposed to be top notch...... I beg to differ! It is awful to have to go through this, drive here, drive there, all because can't find anyone to help.

    Have you thought about doing the AIP diet?

    The place I bought NatureThroid also sold HyrdoCort if you need a source.

  • it is all so appalling!! I have been to at least 30 doctors, since my symptoms started and no one tested my thyroid!!!

    So you had high cortisol from the tumor? How can a person with normal low cortisol have cushings symptoms, which is from high Cortisol..i mean the symptoms are. It looks as though the acth was low, because you had enough or more, at times, cortisol, so the pituitary sensed this and lowered the acth production. Those adrenal tumors can raise cortisol, even maybe intermittently. I bet no doctor even explained it..arrogant S O B'S.

    I had terrible hyper symptoms on low doses of ndt.

    I was put on pred and HC and swelled up like a balloon, high blood pressure and even higher blood sugar. Unfortunately is was also under treated on thyroid and it is a terrible balancing act, which NO doctor is going to invest his time in..i can tell you that. They want their 9 to 5 and get the hell out and go yachting, golfing or visit their call girls ..etc..

    I can try again to take 10 HC in the AM, i am already swollen again..are you?

    I need to get rid of this hashi's or i have no hope of feeling well, that i do know for sure.

  • No, I'm not swollen one bit. Prednisone is notorious for this, though. Do not take it. Why do you take it anyway? Only HC. You need a baseline for at least morning cortisol. HC supp can raise blood pressure, so keep it to a minimum but not too little to where it's of no use. You could take 10 in the morning and 2.5 or 5 around noon or 2.

    I concur with all you said about most doctors. VERY hard to find a good doctor. I'm still searching.

    You are right, it is unusual that I had "Sub-Clinical Cushings" never once having high cortisol. This is what was throwing the doctors off. But I had every symptom of Cushings. In the end, 10 years later, finally an endo said the adenoma on the cortex was releasing Cortisol anytime, I had no diurnal rhythm. The worst part was 11 at nighttime. No wonder I was a night owl. But never once in a 24 hour period, according to 24 urine tests, did I test high. My morning blood draws were alway around 12. Total urine, I believe was around 24. Always low.

    I had all the physical features of Cushing's but on a small scale. I pegged Cushings before any doctor did.

    If they had just listened to me, we could've resolved this 10 years ago. But I was potentially "good business". Yeah, after all I've been through, that's how I feel about doctors now. They don't seem to really want to make you well, you're great business if you remain sick. Who's going to pay the bills if we're well? I'm sure there are millions of people walking around mis-treated by medical doctors. What a shame. Truly a crime against humanity. What a system!

    Have you ever heard of the AIP diet? On Facebook, there is a group called Hashimoto's 411 and a lot of people are doing this and getting remarkable results.

  • Do you have diurnal rhythm no, can you sleep?

    I have low cortisol across the board, a straight line. I have not slept much since 2010, then with the insomnia, developed hashi's, when my immune system finally shut down. No doctor looks at it this way, so i am denied disability.

    I am not on pred, but i gained water weight on both, hc and pred, probably because i have low normal sodium levels, where as adrenal insuff. has low electrolytes. Our doctors are criminals!

  • i have looked into autoimmune paleo, but am eating instead, based on my food test results. Cutting Gluten makes no dif. for me. I am now trying the no sugar detox. I have insulin resistance and my food won't digest well..very difficult.

  • The video I sent you, look his list of Youtubes. He talks about insulin resistance quite a bit, if that's a problem for you. You might find some good info. And he's real big on 'zero' sugar, but realizes bananas, berries and apples are real food.

  • Yes, I finally sleep at night, since most of the time, all the way through. Just prior to my Hashi's Dx, I began to go to bed at 9 every night - my family was like "what?" but I was SO tired and I was also getting restless legs, so I just thought to go to bed early before the restless legs come on. Since I started on T4, RLS went away. I also had this incredible need to overstretch, that too went away after T4.

    You must find a doctor to Dx you as Addison's. Do you wear a medical bracelet? If not, you really should get one. I don't understand why you haven't found one doctor to Dx this. You should go to the ER and tell them you're feeling SO bad. Tell them you have Hashimoto's and adrenal insufficiency. They'll test your cortisol right there. Sometimes this is the only way to get help. It kinda happened that way with me. I got an allergic reaction to something (which later turned out to be red meat) and I had to go to the ER. It was the guy in the ER who told me to go see this particular Endo. She dx'd me with Sub Clinical Cushings and one year later I had it removed. All thanks to the ER guy.

  • i don't have Addison's ..my adrenal glands work fine. I can never be diagnosed with it. I don't have enough ACTH and then eventually my Adrenal Glands will atrophy or have already, but were okay, in 2012.

    I have been to the ER so many times. The last time, i was told that they don't test cortisol or thyroid!!! Because the test results take too long. They go by symptoms. Do you believe this? I told them i had pituitary damage and hashi's..my bp was so low, i was near passing out and my heart rate went to 50. This was caused by too much t3. Apparently without inadequate cortisol, you cannot take too much thyroid hormone...again, this is what i have read, never told this by a doctor.

    I do need to have a bracelet made somehow, with some warning on it for sure. You would think a doctor would tell me this!!

  • I have just been reading all the threads and my heart goes out to you. My youngest daughter is on both HC and t3 only after 20 years of ill health, she is now 21. She tried t4 only then NDT (which can actually increase antibodies in some people - it did for her.) My understanding of HC therapy is that you must take a full physiologic replacement dose, which is 24mg for women, dosed 4 hourly throughout the day - 10mg, 7.5mg,5mg and 2.5mg.Without adequate cortisol levels your body will convert t4 to reverse t3 which then blocks the thyroid hormone receptor cells leaving you feeling more and more hypo. To bring down her antibody levels she follows GF and diary free and takes enough t3 to both suppress her TSH and make her feel well. Suppressing the TSH stops the autoimmune activity. Iron levels are also critical for thyroid hormone activity. You should definitely wear a medicalert bracelet stating adrenal insufficiency. I am not sure that HC raises BP but more so problems with aldosterone and renin which balance sodium and potassium in the body. It is all connected. Optimising your thyroid status will also help with gut problems and food sensitivities. I will send you a private message with regards to sourcing the HC info. Good luck and hugs to you.

  • that is so nice of you! Isn't it all so terrible, what people go through?!!! So sorry about your daughter. My renin was low, in 2011, aldosterone was normal, then too, No follow up testing after that.

    Yes..hashi's was terrible on ndt. HC is supposed to raise sodium, electrolyte levels, this is why people have adrenal crisis's..the low sodium.

    I have HC, now and do not take it because of my experiences, again, in 2012..with the terrible fluid retention, which should not happen, if you need HC.

    There are so many reasons for non conversion, i don't know what is wrong with me. Its really bad to not have a doctor on board with all of this. I was denied disability because they look at mainstream medicine only and no doctor understands this..but they say that they do and they say i am fine!! I can't believe this. Fine, with labs under range.

  • how did you find help for your daughter? What were her symptoms like? I am dizzy often, swollen, headaches..woozy, dizzy , icky feeling, blurred vision, acne, pain in muscles and joints, tendons, muscle spasms, feel like the flu sometimes and terrible insomnia.

  • If you google hypothyroid symptoms, every single one was my daughter, sounds like you! Last year she had a hep b vaccine (compulsory for uni) and it dropped her cortisol really low, causing a year of terrible insomnia. I was frightened for her life because her (pre using t3 )depression returned. Once we increased her dose of HC and used a sleep restriction protocol her sleep returned to normal. Hence I know that chronic low cortisol causes terrible insomnia. The thyroid and adrenal glands are responsible for so many functions and thus cause clusters of symptoms when function is compromised. I think some research and a good functional doctor can help. :) I have pm you with a research site.

  • i have a functional doctor and she sends me back to the endo, to manage my thyoid meds!~!! I was so mad, i could have hit her! Endo number 4, does all the tests, even reverse t3 and still bases the meds on TSH!!! She is frickin' insane..they all seem to be. Maybe " i just need to meditate", like Endo 1 said!

    What is sleep restriction? It is 2 35 AM here..am i doing it? LOL!! Not really funny, is it?

  • why is your daughter having these issues? it seems important to find out why. I am working on repair of my immune system right now, with the functional doctor, but she says my low cortisol is adrenal fatigue and ignores my pituitary damage..i don't think she can just ignore this. She thinks i am fishing to get growth hormone, i think. I don't trust any of them.

  • :) I always think it is best to laugh or I spend my life crying over all my daughters health issues! Addressing your low cortisol is the first step towards correcting sleep and then retraining with a sleep restriction protocol if needed. Which is basically having a 6 hour block of sleep then building from there. You start with staying up until 12am , going to bed and getting up at 6am - even if you only got to sleep at 3am. It can take a few nights but eventually the sleep 'pressure' builds to the point that you fall asleep within 20 minutes. You maintain this sleep schedule for two weeks and then bring your bedtime forward by 30 minutes and so on. Always ensuring sleep happens within 20-30 minutes or you stay at the first step. However you should work on your adrenal and thyroid optimisation first.

    As for my daughter, her health issues were basically from birth, blessed with a family history of hypothyroidism and gene mutations!!! So we know why but the difficulty is achieving an optimised thyroid function. A work in progress:)

  • thank you and good luck

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