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Hello. I just joined this forum because of recommendation from another forum. I just found out I was vitamin D deficient with a level of 15.2 on a scale of 30-100. I've now heard even 30 is low. Anyway, I've been struggling for months with fatigue, weakness in workouts(quit working out actually), muscle and joint pain, 'erectile problems, elevated BP, major depression, gained 8 lbs, , dry skin, etc…. I'm on trt and thought for sure I was having E2 issues. Tried lowering my dose. Didn't help. Took a.bunch of exemestane and I'm sure totally depleted my estrogen for a while. I just never recovered and finally figured it can't be E2 issues. Had them checked and they were at 39 on a scale of like 5-65. Had a sleep study. Not that. Lymes test not that. My dr said lets check Vitamin d leveles. Ok, it can't be that. Really losing any hope. People were thinking it's just in my head. Very frustrated by that thinking. Well it turned out i am Vitamin d deficient. Now what? 2 weeks ago I started taking 50,000 iu of D3. Is this going to bring me back? Obviously don't really feel anything yet. I hear it can take months. I get rechecked in 3 months. I'm not that worried about numbers but more about symptoms and getting my life back. Anyway, it's been really rough. Any of you with similar experiences or any insight? I really don't know what to hope for or what to expect. Thank you much

Asked by  JBone on September 23, 2017

Answers
  •  JBone on

    See title

    Answered by  JBone on
  •  IAW on

    The first thing I have to ask is this. If you live in the USA the chances are the 50,000iu once a week may be D2 and NOT D3. You need to figure out which one you are taking and tell me. This is extremely important!
    Next how much do you weigh total! How much Vitamin D to take also goes by weight.
    Don’t panic you should be able to correct all of your issues/symptoms.
    I look forward to the above answers and I can then better assist you!

    Answered by  IAW on
  •  JBone on

    Thank you so much. My dr prescribed me D2. I found out D3 was better and am now taking that at 50,000 a week. I weigh 195 now after gaining 8 lbs during this set back.
    Thanks for the hope.

    Answered by  JBone on
  •  IAW on

    Please read https://www.vitamindcouncil.org/about-vitamin-d/vitamin-d-and-other-vitamins-and-minerals/. It is very important!
    The next thing is that science has already proven that it is better to take Vitamin D daily and not weekly or worse monthly. So if possible switch the 50,000iu to a smaller daily amount. (If money is an issue I will work with the 50’s. Something is better than nothing and maybe you can use them up later. For now taking daily may speed up your recovery.)
    The 50,000iu is about 7-8000iu a day. When you are deficient it takes more on a daily basis to correct the deficiency and then later you take a maintenance dosage. This is usually 5000iu for the average weight of 150lbs. For every 25 lbs over, take an additional 1000iu. So for you that would be a maintenance of minimum 7000iu. If you do not take the maintenance dosage, your levels will plunge again.You really want a level of 50ng/ml or better.
    So 10,000iu a day is the safe “official” amount to take. You would have to take 40,000iu or more “a day” before you “may” become toxic with too much Vitamin D which means hypercalcemia. There is no lasting harmful affects but you do have to stop the Vitamin D until your levels decrease.
    You could take the 10,000iu a day or if you want too, you can try 15,000iu a day. If in the 3 month time frame you feel better, then cut it back to 10,000iu. If OK on the 10 then try 7000iu but not until you feel 100%.
    It usually takes 8 weeks of taking the same amount of Vitamin D to know what your level will end up being on any given amount.
    If you get any new symptoms or old ones get worse, come back and tell me. Usually means a deficit in a mineral which is usually magnesium.
    Muscles use a lot of Vitamin D!
    You can always come back and let me know how you are doing or ask for more advice!
    If you have any more questions, just ask!

    Answered by  IAW on
  •  JBone on

    You are a wealth of knowledge and I really appreciate your time and efforts.
    Could I buy the Spring Valley 5,000 iu D3 at Walmart and take 2 of those a day or isn’t that as effective as pharmacy grade?
    Also, I’d like to eventually find out why I became deficient. Maybe I always was and the symptoms finally caught up with me. I can’t figure out why my testosterone levels were low. I’m on trt thankfully. Maybe vitamin d deficiency caused this issue. I’ll probably never know.

    • This reply was modified 6 months, 4 weeks ago by  JBone.
    Answered by  JBone on
  •  IAW on

    The supplement industry is not regulated. Therefore any supplement should be purchased from a reputable company. Not sure what you mean by pharmacy grade? The Walmart brand is probably fine but further than that, I cannot comment. I try not to recommend brands but I use Biotec brand. When I first started taking Vitamin D and had 5 people to buy for, it was the most cost effective and later on it was the one recommended by the council. This is because it is free from dyes and fillers and is batch tested. (Again, I am sure others are just fine.)
    I was not specific enough. All of your symptoms including the low testosterone is coming from low levels of Vitamin D. There are studies that show this. So I always try and warn people that if they “correct” a problem with Vitamin D to be careful. In this instance for you, your testosterone levels will probably start to increase naturally. So make sure between that and what you are taking, that your levels don’t go too high or make sure someone tests them.
    As for the “why” your D levels are low. The VDC exists because no one in this world is getting enough to keep a human healthy. Even in India most of the population is deficient. Everyone works in doors, leisure times in the summer are spent lots of times indoors. In winter at most latitudes, you can’t even make any Vitamin D. So if most people are chronically “low”, they may be sent “over the edge” so to speak by an illness, surgery, accident or stress. So having said this, if you can now think of a “reason”, let me know what it is. (I’m just curious!)

    Answered by  IAW on
  •  JBone on

    I can’t think of a reason. I remember about a year ago I started seeing very small signs of a problem. I noticed a little bit of depression, fatigue, gained a couple lbs, lost a little strength in workouts, BP elevated a little.
    Then all of a sudden wham!
    Lost a bunch of strength like over night, BP skyrocketed, very tired and light headed, vision got worse, penis had no life to it, etc… this was so traumatic and I had no idea what happened.
    I imagine I was always low even though I get a lot of sun. Maybe like you said, “ I got sent over the edge” and then that’s when this became so bad in many ways. Every bad symptom I’ve read about seems to have struck.
    I don’t understand the erectile issues. Must have something to do with poor blood flow because of lack of vitamin D which may also relate to BP spikes somehow.
    I think I’m gonna continue the once weekly 50,000 D3 but also add another 5,000 daily D3.
    A friend of mine has a friend who just recovered from this. Don’t know any details yet but I guess he started Vitamin d supplements and gradually felt better to feeling great in about 6 months. That’s good to hear and also gives me hope.
    So, what about you? You obviously have had something happen. Sorry I don’t know more about you or this forum. I just joined by referral. Did you go through a very traumatic time? I hope not but if you did, what happened.
    Thanks

    Answered by  JBone on
  •  IAW on

    I have literally read everything that has been written by Dr. Cannell and the VDC. After you know how humans were meant to get Vitamin D from sunshine and just what it takes to get “enough” to keep you healthy, you wonder how any of us have made it this far.
    For me though the “straw that broke the camel’s back” was contracting Lyme. It took 10 years to be diagnosed. I first started going to alternative health care providers to try and figure out what was wrong because conventional doctor’s were not helping . The first provider I saw would have been when there just started being more and more talk about Vitamin D. Personal computers and the internet were just in their infancy. He checked my level and it was 11ng/ml. No one else had bothered to check my level. I believe at the time only the Mayo Clinic had something about Vitamin D on the internet. As the years went on each doctor, though, increased the amount I should take. Finally 10 years later, on my first visit to a new doctor, I described all of my symptoms and literally within 5 minutes he said I had Lyme. I said “No I had the tests.” He said something to the fact that he guessed no one ever told me that the blood tests for Lyme aren’t any good. He would treat me without relying on the blood tests. So I said test me again anyway because I do not have to pay for it. Sure enough I was positive!
    So several years later I sent my husband to the same doctor I was seeing. He came home with a “fact sheet” about Vitamin D and where it comes from besides supplements. So I got back on the internet again to do more research and lo and behold found this website and Dr. John Cannell. After reading his website, I literally went back and read every “blog post” that he had done over, I believe, a three year period.
    Now that I know a whole lot more about what Vitamin D does, I started to wonder. Since D plays a big part in the immune system, I wonder if a lot less people would actually contract Lyme if we all had higher levels. I wonder if a lot of Lyme symptoms are actually caused be low Vitamin D and not the actually Lyme. I wonder if I had taken huge amounts of D could I have cured the Lyme without anything else. (Not really saying I am cured at this point.)
    You may or may not know that the biggest discovery is that Vitamin D helps turn “genes on and off”. Which in layman’s turns means “helps genes function properly”. So we can now no longer blame everything on our “genetic make-up” because genes cannot function properly without Vitamin D.
    So here is the last fact you may want to know. At levels below 40ng/ml your chances for cancer and autoimmune disease rises dramatically. By dramatically, for some cancers, 60%. So if you have “loved ones” you may want to try and convince them to take their 5000iu a day. Just warning you though, it’s not easy.
    Come back and let me know how you are doing!!!

    Answered by  IAW on
  •  JBone on

    Hi there.
    Things are weird. My BP has dropped dramatically. It’s where it used to be before this 9 month period.
    I’m not as depressed either.
    However, I feel really weak and light headed. Vision is blurry. Even more fatigued than before treatment. It’s been 3 weeks of D3 at 50,000/week.
    I’ve read that you can get worse before you recover from vitamin D deficiency. Something about cells recovering and your body being in an imbalance.
    Any knowledge or advice on this? Sound normal? Magnesium?
    Thanks.

    Answered by  JBone on
  •  IAW on

    Vitamin D should only make you feel better. I would get the magnesium and try that to start and see if those symptoms go away. Vitamin d uses a lot of magnesium. DO NOT get magnesium oxide.
    If that doesn’t change things in a week or two, then come back and tell me.
    If you take too much magnesium the worse that can happen is loose bowels and then you have to cut back on how much you take. So the guess is 250-500mg.

    Answered by  IAW on
  •  JBone on

    Thanks. Got some 100 mg magnesium citrate. I’ll probably start with 300 mg. I imagine this is daily right, or just when taking the weekly D3 pill? Also, when and if I get on a daily maintenance dose, do you think magnesium will still be required?
    thanks again.

    Answered by  JBone on
  •  IAW on

    I honestly do not know if you will still need the “extra” magnesium later on. Sometimes I wonder if Vitamin D can cause a “temporary” shortage when you start taking it. Only way to find out is once you are all better than stop using it and see what happens.

    Answered by  IAW on
  •  JBone on

    I cant imagine me feeling this bad is just from Vitamin D Deficiency. I’m almost thinking of asking dr to look at the possiblilty of Multiple Schlerosis.
    I don’t know how bad the effects of vitamin d deficiency can be but I cant imagine feeling this bad from that.

    Answered by  JBone on
  •  IAW on

    When you originally started this posting, you listed a “bunch” of symptoms and trailed off with an “etc….”. So you did not list everything which is fine. Now it appears some symptoms have gotten better but you said “I feel really weak and light headed and vision is blurry.” You said I am “Even more fatigued than before treatment.” (So we decided you should get some magnesium and see if that helps.)
    Sometimes Vitamin D can cause hypercalcemia. The symptoms of hypercalcemia include: feeling sick or being sick, poor appetite or loss of appetite, feeling very thirsty, passing urine often, constipation or diarrhea, abdominal pain, muscle weakness or pain, feeling confused, feeling tired and bone pain. I do not think you have this. Vitamin D can cause any mineral to go low but usually it is magnesium rather than calcium or potassium and the last two usually cause some kind of “pins and needles” or “numbness and tingling”.
    There are a total of 129 news or blog posts that have to do with Vitamin D deficiency and multiple sclerosis at https://www.vitamindcouncil.org/?s=multiple+sclerosis&submit=Submit. Multiple Sclerosis is autoimmune and there are many more autoimmune diseases. So you could have very well started one of these autoimmune conditions from a lack of Vitamin D but the answer to any of them is probably high amounts of Vitamin D.

    Answered by  IAW on
  •  JBone on

    Thank you so much for all your time and knowledge. That in itself makes me feel better.
    I have Dr appointment on November 2. We are going to discuss next steps if I’m not better. That’ll be almost 2 months into supplentstion. I’m hoping that I will be able to cancel that appointment because by then I should know if I’m recovering or not.
    Thanks agaIn and have a great weekend.

    Answered by  JBone on
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    Answered by  Pharmascience on
  •  JBone on

    I’m 5 weeks into recovery. Been taking 50k D3 every 6 days.
    Don’t want to jinx it but I think i’m getting better. Along way to go but better than going the other way as that is how it was feeling for a couple weeks. I was feeling really bad. The magnesium didn’t seem to help. In fact it may have risen BP. Who knows cuz theres probably many things going on in thousands of cells as my body and mind is hopfully recovering. I cannot wait.
    People have said that the recovery can be a rollercoaster with feeling better then worse and back and forth. Seems to have applied to me.
    Any way just wanted to check in and see if anyone had any thoughts or experiences .

    Answered by  JBone on
  •  IAW on

    There have been people that have posted here and it did take them awhile to get better. Why it took them a little longer, I do not know. Sometimes I wonder if they would have taken more Vitamin D upfront, maybe they would have gotten better faster. But I have also seen some people take higher amounts and it made things worse, so less and slower was better.
    Keep the following in mind. I would not equate a Vitamin D level to how well you feel. This means for example if you got retested at the end of November and had a really high level BUT did not feel completely better yet, then I would keep taking the same amount of Vitamin D. If I had to guess I would do this for 6 months before I would decide that extra Vitamin D is not getting me anywhere. You can also come back and get more advice at any time. Many times I forget to say once you feel better, come back and post. It then gives me more information to pass on to someone else.
    If you still have problems, keep two things in mind. I do not know what Lyme testing they did but most of the blood work is not reliable for different reasons so you may want to research that further before crossing it completely off your list. Also if they did not do thyroid testing I would ask for that. I would make them do a TSH, Free T4 and Free T3 and especially what is called antibody testing and there are two tests for this. (Again a lot of Vitamin D might be the answer for either one of these but I can only assume it would take longer to get better rather than just a D deficiency.)
    Let me know how you are doing!

    Answered by  IAW on
  •  JBone on

    Yes, if I’m not feeling back to normal I will stay aggressive until it’s gone, hopefully only Vitamin D problems.
    Since I’ve gotten this I’ve talked to a few people that have gone through this and they are all better. Don’t know how bad there symptoms really were though other than one guy who was darn near handicapped and I hear he is doing well now. I guess it was very gradual recovery. At 6 months he felt good.
    I’d love to hear more people’s success stories. They are hard to find. It seems when things are bad you see posts from them and then they disappear. I hope to God that that is because they are happily recovered. I will definitely stay involved and communicate whatever the outcome is. I pray it’s a complete comeback and maybe even better than before. That would be awesome and make this nightmare all worth it.
    I’m very thankful my dr found it. It really bothers me that many people are going to suffer for years and be told it’s in there head or they are getting older. I’ve heard that crap and it really upsets me. You tell people that you have Vitamin D deficiency and they tell you they have a cold and don’t feel well. Well I’ve had a 10 month nasty flu. Lol.
    Do you have any good and inspiring posts to read? I’d love to get some optimism today.
    This was my Lymes test about 6 weeks ago and I have had my TSH, T3 and T4 checked. I have a drs appointment in 2 weeks and will cover everything that I can think of.
    Thanks a lot. Have a great day.
    Your Value Standard Range
    LYME IgG ANTIBODIES Negative Negative
    (Index <0.20) – No detectable anti-B.burgdorferi IgG antibodies detected. A negative result does not rule out the possibility of B. burgdorferi infection. If clinical symptoms suggest infection, recommend a second specimen to be tested in 4-6 weeks.
    LYME IgM ANTIBODIES Negative Negative
    (Index <0.12) – No detectable anti-B.burgdorferi IgM antibodies detected. A negative result does not rule out the possibility of B. burgdorferi infection. If clinical symptoms suggest infection, recommend a second specimen to be tested in 4-6 weeks.

    Answered by  JBone on
  •  IAW on

    For the whole “Lyme” thing I would read https://www.betterhealthguy.com/lyme/testing and decide from there if your Lyme testing is adequate.
    If you have your thyroid results give them to me. (I have a lot of information/experience in regards to that also.)
    A while back the VDC redid some computer stuff and “lost” a lot of original Q and A. In there were some success stories. When lady was told she had fibromyalgia and she “cured” herself with Vitamin D. Several (at least three) have had their testosterone levels increase once treated. That problem was what initially bought them to the VDC, Q and A. Another guy I conversed with for a long time said it took him more like 6 months to a year to completely feel better but he was doing well and back to college. Another guy had posted that he was doing the “Coimbra Protocal” this is “very high dose Vitamin D treatment” started by a doctor in Brazil. You can “google” if you want to know more. He was doing very well but again the posting was “lost”.
    So if you have success and keep posting, you would become my go to for other people who need to read a “success story”.

    Answered by  IAW on
  •  JBone on

    These are thyroid from a couple years ago. They were pretty much the same a couple months ago. Doctor says that’s not an issue. I’m going to ask again and ask about Lymes again next week at my appointment.
    I’ve had a couple of encouraging days but today took a step or two back. Monday I probably felt better than I did for 6 months. That was cool. Today I’m disappointed. I guess it could be a long haul.
    Component Results

    Component
    Your Value
    Standard Range
    TSH External
    2.72 uIU/mL
    0.34 – 5.60 uIU/mL
    T4-Free External
    0.59 ng/dL
    0.61 – 1.12 ng/dL
    T3 Free External
    2.88 pg/mL
    2.50 – 3.90 pg/mL
    General Information

    Answered by  JBone on
  •  IAW on

    You have to love doctors. Your Free T4 is lower than the “bottom end” and yet they tell you “it’s fine”. You may want to ask why you cannot be treated if your Free T4 is below the range and see what their answer is.

    Answered by  IAW on
  •  JBone on

    Yeah. I was thinking that too. I’ll ask to take another look at this .
    I was feeling really good at that point though. I was feeling really good 10 months ago too until my D levels struck.
    Do you think that T4 could make that much of s difference?
    Like I said it never seemed to be an issue before and it has always been about that level
    Thanks

    Answered by  JBone on
  •  IAW on

    I am having a little difficulty interpreting what you meant. If you are saying at some point AND at those levels you felt OK, then it probably is not an issue.
    I realize .59 is just a tiny bit lower than .61 but what if you use to be .85. That would mean you have decreased a lot. If normal T4 for you was for example .63 then it could be debatable. Even though the TSH range is .34-5.6 here in the USA it is more like .4-4.5. If you research you will find that for an early morning TSH level 1.8 is more like the norm. Here there are recommendations to lower it to 2.5 BUT the powers to be refuse. (It then leaves a lot of sick people who cannot get help.)
    You could also wait and see what happens after a few more months with the Vitamin D and if not better than bring it up. It is up to you.

    Answered by  IAW on
  •  JBone on

    Component Results

    This is my T4 level a couple months ago. looks like it was a little better although I have been struck with D deficiency. Not sure if this is an issue. I’ll inquire more at dr appointment.
    yes, when I was a .59 I felt great. so that’s probably not a contributing factor.
    I’ve been wondering if I’ve always been D deficient and it finally got me with wicked symptoms. My hope is that if and when I recover i’ll be better than before with good, healthy D levels. That would be really cool and make this nightmare worth the struggles.
    Component
    Your Value
    Standard Range
    T4 THYROXINE, FREE
    0.7 ng/dL
    0.7 – 1.9 ng/dL

    Answered by  JBone on
  •  JBone on

    Dr appointment today. Vitamin D is now 44.9. Magnesium is 1.9 on a scale of 1.6-2.6.
    He also ordered other tests. Don’t know all other than cortisol and calcium. Don’t have results back yet. Possible another Lymes test.
    I’m very sick. Feel as bad as possible. Must not have been vitamin D after all for my symptoms other than in was 15.2.
    Don’t know where to go or what’s gonna happen. I have a feeling lts gonna be a cortisol issue. Kushings?
    I’m pretty scared because I thought this was all figured out. My D level is good now. Maybe it takes a while to feel good after getting there.
    bad feeling there is something serious.

    Answered by  JBone on
  •  IAW on

    You really need to get someone to do a “Thyroid peroxidase antibody (TPO) test” and a “Thyroglobulin antibody (TGAb)”. I think you have Hashimoto’s.

    Answered by  IAW on
  •  JBone on

    Ok. That makes sense. Don’t know anything about it but just looked it up. Symptoms seem totally likely.
    Thank you so much. I’m not real confident in pulling out of this but it’s ok . I just want to know.

    Answered by  JBone on
  •  JBone on

    any chanced that even though I’m well in range number wise after only 7 weeks that it’s just gonna take a while for symptoms to subside? I’ve read this quite a bit but don’t know how it applies to me or if it’s true or what my expectations should be. I do feel slightly better but not anywhere near where I should be.
    I do have a appointment with an endo but that wont be for a month or two.

    Answered by  JBone on
  •  IAW on

    On Oct 20th you wrote “Been taking 50k D3 every 6 days.”
    “Don’t want to jinx it but I think i’m getting better.”
    OK are you still taking the 50,000iu every six days and do you take ANY on a daily basis? If not how much are you taking and when are you taking it? What if you really need a level of 80ng/ml to feel good? Right now you are only at 44. Let me know your answer before I go any further.

    Answered by  IAW on
  •  JBone on

    Dr wants me to take 2000 a day. I’m not gonna do that. I figured I keep taking 50,000 every 6-7 Days because obviously that raised my level quickly with no magnesium or calcium issues.
    I have no idea what my level was when I felt good so I don’t know what level I need. It couldn’t have been all that high if I was at 15.2 for no reason. Could my level drop from maybe 80 to 15 for some reason? My life style didn’t change to make that happen.

    Answered by  JBone on
  •  JBone on

    Oh, btw, how did you battle through 10 years of Lymes? Blows my mind.

    Answered by  JBone on
  •  IAW on

    This is what I suggest you do and try.
    Just forget about the levels (for the moment) and just forget about how this may have happened. Let’s just try and make you better.
    So first stop taking the Vitamin D every 6 days and take it DAILY. (I told you in the beginning that daily was better.) Next increase the amount and take 10,000 iu a day. Do that for two weeks and then let me know how many out of the ten days you considered reasonable/good. (We are not looking for “perfect yet.”) You may need even more than the 10,000 but let’s start with that.
    If you, for example, started an autoimmune condition, it would take a lot more Vitamin D “upfront” to fix the problem and then maybe less later, as a maintenance dosage, once you are better.

    Answered by  IAW on
  •  JBone on

    Sounds like a really good idea. At least gives me something to try while waiting to see endo.
    Dr just told me that It could take a few months to feel better. He said it’s good that I process Vitamin D well going from 15 to 44 pretty quickly.
    thanks. I’ll do that. Hopefully I don’t need any magnesium.

    Answered by  JBone on
  •  DK97 on

    Hi JBone,

    I’m sorry to read about everything you’ve been going through and hope that you are doing better now. I just joined this forum as well and felt compelled to reply to you because I just read and saved an article about Vitamin K2, and it discusses the possible connection between Vitamin K2 deficiency and erectile dysfunction. I’m hoping that all of of your issues have resolved themselves at this point, but if you are still specifically having problems with your erection, please read this: http://www.nourishbalancethrive.com/blog/2015/10/25/beverly-meyer-transcript/

    The transcript is long, so if you do CTRL-F and search for “erect” you’ll be able to jump to the part where she addresses ED. I hope this helps and that you are doing better overall.

    Answered by  DK97 on
  •  C4L on

    JBone, I suggest you do like IAW suggested and take the D3 daily. You may want to take it with K2, or take a D3 that includes K2. I believe K2 will help with D3 absorption and help your body pull calcium from where it shouldn’t be and put calcium where it should be (in your bones). Many people are also deficient in magnesium so it’s not a problem to keep taking that. Either take the magnesium with the D3 or take it in the evenings. It can be a muscle and nervous system relaxant and help you sleep. Take the D3 in the day, though, as it is more of a daytime supplement (simulating sunlight), and could interfere with night time sleep. Consider taking a thyroid or adrenal support supplement if you think the fatigue could be caused by thyroid or cortisol problems (if you need someone to start, try 1Body). Those may help quickly or may take months. Look into pine pollen to naturally increase stamina, energy, recovery time from exertion, and to boost testosterone if your are concerned about those things. MSM is another excellent supplement that every cell in your body needs to function properly. Hopefully, pairing one or more of these supplements with the vitamin D3 will accelerate your recovery. Also, while some people think over 40 or 50 is good for vitamin D, I’ve read that levels closer to 60-80 are needed for serious conditions (chronic disease or cancer). So you might want to consider your goal to be higher and then base your ideal level on your symptoms, like IAW suggested.

    Answered by  C4L on
  •  JBone on

    Well , it’s been a hell of a battle dealing with drs and getting nowhere. I asked my endo why she won’t diagnose and treat me for hypothyroidism. My t4 is below range and t3 is barely in low range. She said my TSH would have to be at 10 to do that. I’m at at least 3.2 which isn’t good either in modern times and awareness. TSH is way overrated anyway because it doesn’t really have a meaningful value in people with things like secondary hypothyroidism. She even did a MRI on my pituitary to look for tumor. She didn’t see one but obviously knows something is up regarding low t3 and T4 with in range TSH. Every single symptom I have screams hypothyroidism and numbers pretty much indicate it as well. Also regarding vitamin d deficiency, I’m thinking hypothyroidism caused it now.
    I need to get diagnosed and treated I really believe because that’s gotta be my problem. Obviously I need to find the right dr. My antibodies are low so it’s not Hashimotos.
    I’ve talked to many people who had better numbers than mine and got diagnosed and have there lives back.
    This is unbelievable.

    Answered by  JBone on
  •  IAW on

    What is your very latest FT4 level? The bottom end on my range is 0.82.
    Did she do a thyroid ultrasound at any point?
    How old is this doctor because the top end of your TSH range listed above was 5.6 and she told you she would not treat till 10? (That number comes from many, many years ago.)
    The following may be worth a shot. You might be lacking in the raw material to make T4. So you can investigate further but you could start here at https://hypothyroidmom.com/10-nutrient-deficiencies-every-thyroid-patient-should-have-checked/. She runs a good website. When you get to the part after it talks about Iodine, it talks about B2. Vitamin D can make B levels go low, are you talking a multi vitamin? If so does it have Iodine in it?
    If you live in the USA what city do you live closest to?
    Here is a story for you. Mary Shomon is probably the first if not one of the first people to say that the entire way, including thyroid ranges, are all “messed up”. She knew she had a problem but doctor’s refused to believe her. As I remember, one of the doctor’s said we have done everything accept for sticking a needle in your thyroid and retrieving some cells. Opposite to what they thought, Mary said do it. Hashimoto’s did not show on a blood test but it sure do show up on the needle biopsy!

    Answered by  IAW on
  •  JBone on

    She’s 63. I know, I guess this is very common for people that are hypothyroid. They can’t get diagnosed because of TSH numbers which aren’t even a thyroid hormone anyway. If there’s something off with your HPTA, you maybe can’t produce enough TSH to get T3 and T4 at a healthy level. I’m pretty sure that’s my issue. Actually I’m 95% sure because with my T4 below range at .6 and T3 at 16% into the bottom level my TSH should be 10. It’s 3.2 three months ago compared to 1.7 when I felt good.
    I need to get the right dr and get this treated. Hopefully Tuesday this is happening.
    Do you think hypothyroid causes Vu vitamin d deficiency?

    Answered by  JBone on
  •  IAW on

    I wrote a very long answer this morning only to realize later that it did not post.
    Now I use to believe that if they just changed the TSH level and made it 0.4-2.5, like some officials have stated should happen,then everything would “work” and all of us that were sick would find help. I also thought that as long as FT4 and FT3 levels were taken and were out of range, that you could get treated. As we have seen with you that didn’t make much difference but for some doctor’s it would.
    Now before a TSH test there was a TRH test. “First, a baseline TSH test is done. Then you’re given a dose of TRH through your vein which stimulates your pituitary to release TSH. A second blood sample is then drawn 20 to 60 minutes later, and the TSH level is retested.” See https://www.verywell.com/trh-stimulation-test-thyroid-testing-3232910. This test could detect pituitary disease and/or hypothalamic disease. This test would follow with what you are saying, something is wrong in my brain and the TSH cannot work correctly. Two of the reasons for hypothalamic dysfunction are “infections” and “head trauma”.
    This is my predicament. If I try and only use a TSH level to treat, even if I take that TSH level down to 0.4, I still do not feel well. Right now I work with a PA-C who takes my FT4 and FT3 level and TSH. Right now we work with keeping my actual hormone levels in the “range” but only uses the TSH level to see if it shows a “downward” trend which is good. So your thought that your TSH level “really should be more like 10” is probably correct and helped me with a “light bulb moment”. So if you are like me and someone agrees to treat you BUT they also will only treat down to let’s say 1.00, you could have the same issue as me.
    If you wouldn’t mind, if you get treated and “feel well”, PLEASE come back and tell me what your levels are. I want to know if you can get your “morning” TSH level back to 1.7 and then under those circumstances what are your FT4 levels and FT3 levels. Also what medicine(s) you take and how much?
    I also use to believe if I just took the “right amount” of T3 and T4 meds, that I could keep my TSH within the range and that I just needed to find that exact amount. Now I am not so sure about that either!
    Now “which came first the chicken or the egg”? Did hypothyroid cause a Vitamin D deficiency? I do know that a Vitamin D deficiency can cause hypo. I do know that a D deficiency can cause vitamins and minerals to go low and that you may have to take them in supplement form, for a while, to get yourself back on track. I know a D deficiency can cause a B12 deficiency and that magnesium amounts are low in most people’s diets. “In order to properly make TSH you have to maintain adequate protein in your diet.” “Magnesium, vitamin B-12, and zinc are also required to make this particular hormone.” So it appears to me a D deficiency could lower the “raw” material needed to even make TSH and probably lower the raw material needed to make the actual hormone, T4. This is an easy fix. Once you take enough D, take the “raw” materials and if levels do not change, then that wasn’t the issue.
    Flip side being hypo can also cause vitamins and minerals not to absorb. Your entire body doesn’t function correctly.
    If you want to ask more questions or comment before your appointment, do so. Come back and look at the blog before you go to your appointment, in case I want to tell you anything else.
    If they will treat you, come back and tell me because I have more information to give you about treatment and what to be aware of.

    Answered by  IAW on
  •  JBone on

    Excellent. I’ll stay in touch. I forgot you have hashiomotos right?
    I have a new endo appoingment Thursday in Madison with Dr Wubben. People have been telling me I should try to see her. Luckily enough I am going to. I see she treats on sympotoms and numbers and doesn’t revolve everything around TSH. I guess she treats T3 and T4 and will use Armored and things like that. I don’t know much but obviously need to learn. If I didn’t i’d be on anti depressants and sleeping pills instead of fixing the issue and hopefully getting healthy again.
    what are your t3 and t4 levels at? TSH is down to .4 and that doesn’t help you? I cant believe how TSH is the only number for so many drs and it probably is way overrated.
    I have to read more about the TRH test. That could tell everything with people with secondary hypo.
    well, good talking to you again. I’ll stay In touch and maybe we can help each other.
    How do you feel now? Do you really like your dr?

    Answered by  JBone on

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