Your free T3 and T4 needs to be in upper quadrant not midrange. Your reverse T3 needs to come down which should happen when the others increase. This according to Stop Thyroid Madness.
Old topic but wanted to share in case it helps others. Iâm not a doctor but have a deep general understanding. Itâs long but believe me, itâs a summary of a very active 4 years. T1D since I was ~5 so for 42 years now. The details in here are only for understanding the scenarios and communicating with endos, not to say itâs your problem. You have to talk to endo for all of this.
In 2010 moved to South Florida and my energy levels were, eh, ok. Didnât feel fatigued as far as I could tell. 2 years later after doctors started prescribing cholesterol meds I was fine for 6-8 months but towards in the end of 2012, I noticed I was getting tired, fatigued, etc. Knowing what I know in the summary, Iâm in charge so I stopped taking the cholesterol meds. They werenât making much difference anyways. It wasât dropping and what it was dropping it, it was making me weak(er).
Fast forward it got to the point that my sciatica was getting sore after ~20 feet of walking, extreme shortness of breath, etc. until I sat down and rest for 5-10+ minutes and resumed. Rinse & repeat.
Finally got an endo that noticed my âround faceâ or âmoon faceâ and checked my ACTH (hormone that pituitary produces to tell adrenals to produce more cortisol). It was high. Start of my journey. Checked cortisol and it was ânormalâ so he ignored. I later learned it was ~higher than it shouldâve been because of my constant anxiety and not forcing myself to relax when they were taking my blood. I told him it was adrenal insufficinecy/addisonâs and to check the renin levels (renin from the kidneys tells the adrenal to produce more/less aldosternone which tells the body to hold/release sodium in the body). Blood tests are always supposed to be dead-middle 99% of the time based on a large number of âhealthyâ individuals. My sodium for the last 20 years was always on the low side of normal, but normal, and vice versa for the potassium. First 2 endos refused to check my renin levels. First endo stopped seeing because insurance changed. 2nd endo blamed the occassional melatonin I used to try and keep my sleep routing on schedule â I was passing out and out cold on couch when I got home from work and then woke up and couldnât sleep. Rinse & repeat.
3rd PCP and 3rd endo I decided I was going to be extremely assertive but first had to earn their trust before I brought up the blood tests I wanted. First PCP appointment I was yelling at him and gave him brief story and pleaded for him to check my renin levels even though he wasnât an endo (this topic will come back 4 years later with PCP). He âcouldnâtâ so over the next couple of years told him to check this and that and he always thought âIâd be fine but weâll check it anywaysâ. Vitamin D, 18. Very low. Need to supplement. MMR antibodies. .9, needed booster. Rinse & repeat.
FINALLY! Beginning of the diagnosis
Fast forward to 2016 my PCP done blood tests and I was so tired and didnât look, ready to die when/if it ever happened, and I missed it and so did PCP. My potassium was elevated dangerously high. 6-months later I went to ER and they discovered dangerously high potassium levels and acted on it. First blamed supplements, etc. Best I could do was I recently had creamed spinach which is ~high in potassium but body is more than capable of handling it. During my visit my kidney, born with only 1, ERP levels dropped to âkidney failureâ status. I had a converation with the nephrologist and explained things also talking about my elevated liver enzymes. As he was turning around to walk out he appologized Iâve went through this and he said, his exact words, âYouâre probably right. Iâm sorry.â So they lowered my potassium, discharged me and prescribed expensive a** medication which lowers potassium levels (no way to measure or know where Iâm at).
Reward
Anyways, the 3rd endo I could never find anything to earn his trust other just general converasations. Made him aware of the dangerous potassium levels so he had a blood test to check my renin and adrenal antibody levels (YES!!!). So I got a call at 10PM the night the results came in and he said I need to go to 24-hour pharmacy to get these 2 prescriptions tonight (fludrocortisone â aldosterone replacement for sodium/potassium balance and hydrocortisone â cortisol replacement).
Fast forward to next appointment he said âWhat you have isâŚâ I stopped him and said polyglandure autoimmune syndrome, Type 2. Adrenal insufficiency or addisonâs disease depending on how far it is. He looked at me and asked if Iâve seen another doctor that told me that. Nope. Just what Iâd been trying to get diagnosed for the last 4 years. ALSO, why my cholesterol was high (detailed in summary). He asked me what my IQ was and we had a converation on the past and he too shook his head. Something high-functioning autistic people, aspbergerâs syndrom, have learned, traditional IQ is a lot about logic. Weâre full of it. Figuratively speaking. Being extremly analytical helped me through all of this. Trust earned!
Next PCP appointment I made him aware and he recalled our first encounter, smirked slightly, shook his head and asked if I could have endo send a letter/note to him confirming it. Trust earned!
I also self-diagnosed my gluten allergy that was causing problems. Described it as inflammed pancreas or pancreatitis. Test results showed elevated antibodies, but not enough to be classified as celiac disease. Endoâs reaction was hand to forehead after Iâd been describing my issues and I was getting the impression it was pancratitis like but not full blown. With my insulin pump, I narrowed it down to bread was causing spikes up to 300+, not from the carbs â the higher the basal rate the quicker my glucose climbed and only when I turned off my basal did my glucose start to drop. The pancreas was inflammed, thus lowering my glucagon release by the pancreas thus causing my adrenal fight or flight response to elevate cortisol levels because of âtoo much insulinâ (fight or flight response cortisol is the same, but not the same release schedule/amount as daily cortisol levels).
A lot more conversations have been had with both PCP and endo. But here are key points, good or bad, theyâre facts that have to be fought. Insurance & doctors are trained to follow a specific set of tests, processes before they go down the path. So to a point, you have to convince them.
SUMMARY
- Our bodies are a literal chemisty lab that doctors have a basic understanding, but theyâre trained to treat the symptoms, not understand, analyze all the way & talk about it to patients.
- T1D is an autoimmune syndrome thus brings along with it potential for other autoimmune diseases. Celiac, adrenal insufficiency, thyroid insufficiency, etc.
- Cholesterol can be a symptom when itâs elevated. Itâs used by both the thyroid and adrenal to make their respective hormones. Even when they arenât effectively being made. The request for the hormone or more of it, liver produces cholesterol for the preperation to make it, thus putting you into the hypercholesterolemia.
- Sodium, potassium not in the dead-middle of normal, are likely a symptom, but not guaranteed. Just like the TSH* tests for the thyroid.
- Not sure about the thyroid, others know more speicfics of the exact tests that should be checked that doctors donât normally. But for the adrenal, you must insist for, at minimum, for ACTH and renin, antibodies, etc.
- My âround/moon faceâ wasnât a symptom of my problems, itâs a symptom of my (high-functioning) autism. For me comes with high-levels of anxiety around people thus high levels of fight or flight cortisol.
-If you happen to have CFS/ME (chronic fatigue sydrome), there have been recent developerments in that area. Google news articles and you should find the details in case you need to head down this path with your doctors.
So if you have a willing endo, check the specific tests for the thyroid if you havenât already. If they have, then also have them check your ACTH, renin and adrenal antibodies despite the other blood tests. In my opinion & experience, even a little off dead-center normal, youâre onto something. But betting you should find it because it sounds familiar to me.
HOPING some or any of this helps!
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Holy cow, this is an amazing (and horrifying) read! Iâm so sorry youâve had a whole series of doctors that wouldnât listen to you, and Iâm glad youâve found some doctors now that you have a good working relationship with.
Thanks. This is going to sound arrogant and not intended to be but thatâs my life. Iâve just learned to find a distraction, in this case 10-12 hours of sleep every day for time to pass and keep bringing up the topic periodically until the person(s) come around to listening instead of ignoring me. Very satisfying seeing the expressions on their faces but would gladly give it up for them to take a little interest versus literally losing 4 years of my life.
I certainly feel sorry that you were not given the attention at the beginning.
I will only give my experience to part of it in that my GP said my cortisol level was too low and when I did take even a very small amount of extra cortisol in 2016, it made me very angry and I sure donât need thatâŚas I can get angry enough on my own just watching the news or even reading what happened to you.
So in 2016 my endo had me do the ACTH stimulation test and he said I responded well enough on my own so in reality there is no need for me to take extra cortisol and I feel way better just managing my health on my own.
Then when they have an idea that I should take a NEWER 36 hour duration version of insulin that will cost me an extra $700 a year I decided NO, that is just so they can earn their points for the referral and as I do not have coverage and have to pay out of pocket I better stick with what does work at least as well as it does. I use Lantus and HumalogâŚand as they are OLD types of insulin they cost less.
So I will have to re read your account above and see in time whether I should do any of those tests.
But I had already found a way to lower my reverse T3 in 2017 and just cannot afford to buy the T3, so I make sure I do get the needed supplements to make my own hormones and so far my latest reverse T3 was as low as 14 ng/dl as it is only measured in USA lab work as Canada does not measure it and I do have it tested every 6 months. I had been able to get it as low as 8 ng/dl in 2017, but that was by using T3 some of the time.
The problem with using any hormone all of the time, like many of us have been using insulin is that in time the body gives up being able to make it on itâs own even if they never ever truly found out if there were any antibodies as I have NEVER had the antibodies measured and I was astounded in the years 2000 to find out I was only just below the normal range on the c-peptide test so really I have been turned into a diabetic only by taking insulin. I think newly diagnosed people out to be taught that they might actually not be diabetic.
IMHO any person no matter in whatever health condition they are in would be wiser to eat more low carb than high carb anyway. So one good outcome of being diabetic is I have been much more health conscious for the last 39 years and have done a lot of reading on the topic.
I fully support your idea of doing your own research as that is how I cured my own case of neuropathy in 2002-2003 and they still do not seem to believe me. That accounts for why my level of satisfaction with doctors is as low as 5%.
Doctors generally put a person into a cubbyhole category and apply defined actions and if it takes more figuring out they sure are not interested in putting in the effort that takes. So that is why a motivated person who does enough of their own research may be able to cure themselves, but most likely will not get support from the doctor.
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Do you have any citation or links on that?
So here is my contribution as I am paying attention tonight and maybe Eric has not seen it yet.
I asked google this question âŚ
how does the body signal to the liver to make more cholesterol?
âŚand got a good link to a PDF that can explain it in Biological Terms and if you can explain that in one paragraph then you would deserve a medal as it is far too complex to make it simple.
http://medcell.med.yale.edu/lectures/files/cholesterol.pdf
The reason it is complex is there are a variety of reasons the body would make more cholesterol and if you have lots of internal damage it uses cholesterol as a patching material. So one way to have cholesterol production drop on itâs own is to use lots of antioxidant supplements on top of an already good diet that minimizes internal damage.
So I am mentioning three topics
- Cholesterol to repair cells walls
- Cholesterol as a basis of building any hormones
- Cholesterol as a means of repairing internal damage which also includes combatting potential cancer that starts or anything the body does not want.
(1) So the main reason people experience PAIN in their muscles if they do lots of exercise and are on a statin is cholesterol is used to build cell walls and after exercise the body repairs damage and helps to improve muscle tone so to not allow it to do that will result in pain. That is a famous side effect of taking a statin. I am not saying this applies to all pain because if you stub your toe that is not related to cholesterol issue but justy the trauma of the action that happened and would be a factor whether or not you were on a statin. And if people do lots of activity for a move of house over 2 weeks I bet they would feel more pain one way or another from hour5s of lifting things when they have not done that for a while⌠I am just talking about the pain that comes of not being able to effectively repair after exercise.
(2) Here is one I knew about years ago
The rationale for that is if you stop allowing the body to make as much cholesterol as it deems it needs then you have a problem. You are not solving the real problem, but creating a new one. Statins have introduced probably more adverse effects than they solved as I wonder how many who have fibromyalgia have been put on statins.
So artificially stopping the body responding and making more cholesterol to make more hormones when needed then you have a serious problem, as the body then cannot do its job and you end up being told you are not lowering your blood sugar as much as you shouldâŚand hence that is how people are told they are diabetic.
The fact the class action was for women doe not mean it would not also apply to men. That class action was WON and they have to have their ducks in a row to win that and I leave it to you to read the details.
Notice they cannot state it as a fact in the above WebMD article or the drug companies would start suing the people who rote the article as the drug companies have a business model that says take a statin and it will be good for you, but I sure know that is not true, as I follow the approach of taking enough supplements that my cholesterol profile was said to be fine many years ago and when I slack off on the supplements the situation reverses.
There are MANY books written on this topic and I read one in 2009 even though I already understood the concept. When I once explained it to my endo he said I understood it better than his med school students and I said that is because I read a lot.
(3) It just makes way more sense to lower internal damage than it does to allow the patching of internal damage to go on unchecked as it is better to stop the problem before it starts. So as a consequence since I have done this for about 39 years my blood pressure is not a problem like it is for other people who just never bothered to study these things. I sure know it is complicated.
Your post is very interesting!
I work in the medical field (but more than that, I study a ton on my own) and so have an understanding of most of the concepts here. What I was specifically after in my post was the mechanism by which endocrine malfunction drives hypercholesterolemia. Basically the link that the OP was basing that on.
Thank you for your reply.
My older husband has an A1c of 6 thanks to the statin that he takes. He started taking one maybe 10 yrs ago, and his A1c has been slowly climbing. He is slim and none of his blood relatives are diabetic. I have long believed that the statin is the culprit.
Not needed. First hand experience and common (logical) sense. While I was waiting for doctors to confirm my diagnosis, I was diagnosed with Hypercholesterolemia. Which I explained to the doctors at one point which no acknowledgment. Once I was finally diagnosed and provided medication, my fast heart rate, averaging 99/min, cholesterol, and elevated livery enzymes returned to normal nearly instantly.
A more recent visit my PCP he was wanting my cholesterol even lower and I looked at him and said just prescribe Levothyroxine and itâll happened. Otherwise the other medications exhaust my body of the necessary hormones. He looked at me and said in a mostly nice way âYouâre too smart. Most people just do what I sayâ and that was the end of the conversation.
Cholesterol is used to make pregnenolone. Pregnenolone is the basic âingredientâ for all other hormones â pregesterone, dhea, which in turn produce testosterone & estrogen. Pregnenolone is also used to make your thyroid hormones, etc. It goes on and on.
@JaninaWalker - I did not see your reply before I replied but youâve got it! I want to so bad give you a IRL high-five. lol
Marilyn, statins have been proven to raise A1C levels. FDA back in 2012 I think updated itâs side-effects on the statins.
Yes, I realize that, but my husband has very high LDL without one, so his doctor thinks it is wise to take one. Who really knows what my 70 yr old husband should do at this point. At least he takes one which shouldnât affect his brain.
So let me understand. If I encounter a patient with endocrine dysfunction and elevated cholesterol, itâs a lock that I can go to the provider and recommend getting the endocrine dysfunction (whatever it may be) under control and then basically watching the cholesterol levels come down to normal? Sorry for the sarcasm, but no matter how dubious people consider so-called evidence-based practice to be, I cannot suggest doing something based on the fact that eric30 of the diabetes list serve said itâs basic common sense. Should I endeavor to understand this myself thereby becoming fluent in the concept, so to speak, so that persuading others may be easier? It would be nice. The best way for me to do that is to read. Read papers, read papers challenging the concept, watch videos. I do not have enough lab access or even enough hands-on access to run experiments myself. I must rely on others more knowledgeable than myself to understand a new âbasicâ concept. Help me help you.
This is absolutely true and there has been at least one class action lawsuit that was won on the basis that limiting cholesterol makes it harder to make enough insulin as it is made out of cholesterol.
Back in 2014 I had to analyze my own situation and take the directing role with the help of my endo. But the part where I took the lead was in finding that while I had no problem with antibodies as three were tested, I did have a tendency to make reverse T3. That cannot be measured in Canada and my endo was aware but not that it can be asked for if one pays to have the tests sent to the USA. So now I have to pay even higher as they decided to increase the price.
I bought a bottle of iodine and take selenium to make the translation of FT4 to FT3 easier and my last results were better, but there still is a reverse T3 issue but not so high for me to pay the huge amount to get the T3.
Basically there is a problem of a person not being able to make a hormone if they refuse to use table salt for the various reasons. So as long as you do get the needed inputs from food or supplements, if your gland is still functional it can make what it needs. It would be totally wrong to believe a doctor who falsely claims with minimal info that a person is a hypothyroid person. So my BF had been classed that way by our common doctor in 2001. But in 2015 I had the same doctor do the right tests on my BF and all he has is the same reverse T3 issue that I have and yet we have no antibodies. However, getting someone to do the right things is another issue, or battle. My BF has a prostate issue for almost 3 decades and one of the books I read had said application of iodine in cream to the prostate are can result in the swelling to reduce, but took the man about 4 months to achieve the benefit⌠The man who mentioned his case in the book had been in his 70s and did not need to get up as much at night.
Also women who had breast lumps were said to get those to reduce in a similar manner. The book I had read was called âThe Iodine Crisisâ by Lynne Farrow. It was one of at least 5 books I read in 2014 on the thyroid topic. It is a really good read and highly educational about how beneficial iodine can be and yet has fallen into disuse.
I have handled my cholesterol levels with antioxidants. When I occasionally go off the vitamin C to the same level the levels get out of line and my endo had said âI know what you are going to say, but now I suggest a statinâ and I said I will just go back on more vitamin C.
So the Jan 15th 2020 results were pretty excellent and he wondered what had happened. I had found a type of vitamin C that is even more fun to take, so had increased to higher levels again. I still take 800iu of vitamin E with my main meal and I do take other supplements.
All you need to do is prove to yourself with your own experiments and see that it works which certainly does take effort, but in the long run would be better for you. If you do not wish to do that, then it is your own funeral.
It is true that you and almost everyone else will not pay attention to anything that happens to only one person, but the person themselves can figure out on their own that it is working as they know how to evaluate their own situation. I certainly know for myself.
You love sarcasm, so if you are asking for a recommendation for a painter for your kitchen will you insist on a double blind study before you take anyoneâs recommendation? Or will you recognize that no one does that with painter recommendations and that some faith in individual experiences will have to be relied upon to some extent, plus a look up on the BBB?
Since I do tests 2 times a year I can set out to do my own experiments and so can anyone else and it will not cost that much more.
I do not love sarcasm, and my reply was to Eric, and written as someone who administers medications and advocates for patients every day. I almost always read responses here and write responses as well with an eye to the individual patient and a population of patients. Both.
So it is nice to know you are on the side of the patient or the individual or however that can be said best.
So let me ask a question referring to a fit healthy man who is newly diagnosed as needing T4 medication while in his mid 30s and then finds out he has astronomical levels of reverse T3 and is very upset about it.
How would you advise him as he had the issue of feeling like a zombie and yet there he was guided incorrectly by his own doctor. He then read many of the books I also had read in 2014 and was on the same path I had been on to get rid of the reverse T3. In my case I had no antibodies with TSI, TgAb and TPO all tested in 2014.
I donât have his numbers memorized except that he had double the level of reverse T3 that I had along with my BF another person who also had no antibodiesâŚbut does have the low temperatures. My temperatures have corrected totally since 2014âŚbut my BF is just not going to bother.
The man in Italy was very frustrated as no one would pay attention to his situation in another group, so I not only felt sorry for his situation, but learned from his experience that if someone is put on T4 unnecessarily that it can shoot up the reverse T3.
Iâm glad you are on the CPAP and doing well. I have an AHI of 20 per hour, but most of my breathing events happen during REM sleep. I get very little not even 10 percent of REM sleep due to the constant waking. Doc will not talk about stimulants so I stopped seeing a sleep doctor. I have some central events as well and with the pauses in breathing and the central events, they prescribed me a BIPAP machine. It will breathe for you if you stop breathing. My oxygen never goes above 88 percent all night long. But after trying to use the mask so many times, I have a fear of choking and am claustrophobic. My pressure setting is also 21 which is the highest setting they have. My airway resistance is very high. I simply have the BIPAP sitting here collecting dust. That is why you see me posting about my high fasting numbers after drinking coffee. I have to pound strong coffee all day or else I wonât even be able to watch TV without falling asleep. I mean coffee so strong, that if it did not have Splenda and milk, you would literally gag as it went down. I also drink a lot of diet iced tea. On really bad tired days, I can pound all that coffee and then go right back to sleep like a baby for hours. I know this apnea is killing me but I hate breathing machines. That is why I have a DNR and no breathing machines. It is my biggest fear. I hope you feel better. They were able to eliminate all of my events on a pressure setting of 21 during my split sleep study. 8 events a night is not optimal, but a lot better then not being treated at all. Have you looked into Modinifil, spelled wrong. That is a stimulant medication that does not work like Adderall does. It actually targets a chemical in the brain that promotes wakefulness, but it not technically a stimulant.