severe Anxiety, Depression and pain

Hello, I joined this support group on behalf of my sister who had Graves Disease and had her thyroid killed by Radioactive Iodine treatment. And now has Hypothyroidism. My sister became severely depressed and anxious over the last two years. She thought it was due to the extreme constant muscle and joint pain she has on her upper right side. It starts from her shoulder blade, directly in her shoulder, up her neck, face and head. When they couldn't find a cause they put her on antidepressants. A pain clinic put her on opiates and between the two drugs and no diagnosis her mental state has gotten worse. Now they say she has a personality disorder. She has tried to kill herself several times and starting last week she is now receiving Shock Therapy treatments for the depression. After doing research on the internet I've read that my sister's pain, anxiety, depression and mental breakdown can be caused by her thyroid disease. Her doctor's all say no because her thyroid test all comeback in the normal range. Do anyone of you have any experience in this area? I'm trying to keep my sister from losing her mind. She currently takes 125 mg of levothyroxine. She is 60 years old and we live in Seattle, WA.

Thank you.

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  • Hi dburns21, welcome to the forum. I'm sorry you need to be here under such tragic circumstances.

    It does sound as if your sister is under-medicated. But, impossible to know without seeing any of her labs. Do you have any copies - with the ranges. 125 mcg levo is not much of a dose for someone with no gland.

    Unfortunately, doctors know so little about thyroid. They don't know what the symptoms are, and they don't understand the ranges. Just being 'in range', is not the same as optimal. And if you're not optimal, you can exhibit all sorts of symptoms.

    It could very well be that your sister cannot convert the T4 (levo, a storage hormone) she is taking, into the active hormone T3. Low T3 can have very bad effects on the brain, because the brain needs the most T3 of all the body. So, you can get symptoms like depression, bi-polar, anxiety, etc. But, we won't know that, without seeing the blood test results.

    I do know one person that spent a good deal of time in mental hospitals, and had electric shock treatment, etc. And, in the end, it all turned out to be her thyroid the problem.

    So, do try and get hold of her blood test results, and let us see how well she is doing on 125 levo. It could be that just an increase in dose will do wonders for her. x

  • Dear Graygoose, thank you so much for your quick response. I will get everything that I can as soon as I can an follow up with you. My sister is in the psych ward at our local county hospital right now having the electro shock treatments so getting the labs may prove a bit tricky but I will see what I can do.

    Thanks again.

    dburns21

  • I am so sorry to hear that. Poor lady. And, it must be so hard for you, too. I didn't know they still did that.

  • Same as you GG I didn't think they did those treatments anymore. No less than barbaric!

    I don't suppose her GP would give you her test results, with permission from your sister?

  • Hi Silver Fairy, my sister signed a release so I could requests her medical records. Unfortunately, my car isn't working properly so it will be a few more days before I can go and get the Lab records. I hope to have them by the end of the week. I can't wait to post them so greygoose and others can share their thoughts.

    Stand by.

    Hugs,

    Dburns

  • Hi Greygoose, below are the most recent thyroid lab test my sister has had. Thank you for taking a look and telling me what you think.

    Labs on December 28, 2016 - TSH - 0.808 ulU/ml

    Labs on November 6, 2016 - TSH with reflexive Free T4 0.338 ulU/mL,

    Thyroxine (Free) 0.9 ng/dL,

    Labs on September 15, 2016 - T3 (Free) 3.3 pg/mL,

    TSH 1.032 ulU/mL,

    Thyroxine (Free) 0.9 ng/dL,

    Thyroxine (T4) 9.0 mcg/dL,

    Triiodothyronine (T3) 97.0 ng/dL,

    Labs on September 03, 2016 - Anti Thyroid Peroxidase 5.6 IU/mL

    Cortisol at that time was 19.8 Mcg/dL

    Anti Thyroglobulin <1.0 IU/mL

  • Hi, dburns, do you have the ranges for those tests? I'm afraid they mean nothing without the ranges.

  • Labs on December 28, 2016 - TSH - 0.808 ulU/ml

    (range: 0.400-5.000)

    Labs on November 6, 2016 - TSH with reflexive Free T4 0.338 ulU/mL, (range: 0.400-5.000)

    Thyroxine (Free) 0.9 ng/dL, (range: 0.6-1.2)

    Labs on September 15, 2016 - T3 (Free) 3.3 pg/mL, (range: 2.4-4.1)

    TSH 1.032 ulU/mL,

    (range: 0.400-5.000)

    Thyroxine (Free) 0.9 ng/dL,

    (range: 0.6-1.2)

    Thyroxine (T4) 9.0 mcg/dL,

    (range: 4.8-10.8)

    Triiodothyronine (T3) 97.0 ng/dL,

    (range: 73-178)

    Labs on September 03, 2016 - Anti Thyroid Peroxidase 5.6 IU/mL, (range: 0.0-8.9)

    Cortisol at that time was 19.8 Mcg/dL, (range: A.M. 7 to 9AM): 5.0-22.6)

    Anti Thyroglobulin <1.0 IU/mL, (range: 0.0-3.9)

  • Hi Greygoose, it's 1:13 am here in Seattle so I am off to bed. If you don't mind I will look for your reply later on in the day.

    Thanks so much for looking at this for me.

    Diane

  • No problem. Sleep tight. :)

    OK, some of these results are for Total T4 and T3, which don't give any useful information.

    But, the FreeT4 and T3 seem to stick at about mid-range. Which whilst not being horribly low, could be too low for her. In any case, there's plenty of room for an increase in dose - even a couple of increases. However, she does seem to be converting ok. Most people need their Frees up the top of the range to feel well.

    The problem often is that doctors only go by TSH, and her TSH would look fine to a doctor. However, as she had Graves, her TSH might never go very high, whatever her Frees. So, that's really not a good test to dose by.

    Has she had her nutrients tested? Vit D, vit B12, folate, ferritin. Low nutrients will have an effect on how her body handles the hormone she's giving it.

  • Hi Greygoose, Thanks for your reply. It sounds like based on the labs I had available, my sister's labs don't look to bad. And there may not be anything remarkable going on with her thyroid disease from the looks of her labs? As I read your reply over and over, I do get the sense that if we had the right doctor, they might be willing to increase her Levothyroxine just to see if she feels better? You mentioned that she had room for 2 increases. She is at 125 now, what would be the recommended first and second increase?

    Last question, is there a way to explain on an elementary level what you mean about how the TSH might never go very high (what ever her frees???) because she had graves?

    Labs for Jan 9, 2017

    B-12 Cobalamin - 417 pg/mL (normal: 180-914 pg/mL, Indeterminate: 145-179 pg/mL, Deficient: <145 pg/mL

    Vitamin D2 - <1.0 ng/mL

    Vitamin D3 - 35.1 ng/mL

    Vitamin D Total - 35.1

    Vit D Interp: 20.1-50.0

    Lab on November 11, 2016

    RDWCV - 14.8% (range: 11.6-14.4)

    Lab on November 6, 2016

    RDWCV - 14.6% (range: 11.6-14.4) During this period my sister's Platelet count and her White Blood count were both a little high. Above the high in the range. If that means anything.

    I can't find a lab for Ferritin

  • Her labs aren't too bad. But, they aren't too good, either. Her Frees stick at around mid-range, but most people need then up the top of the range to feel well.

    So, yes, it will probably take a couple of increases in dose to get her Frees up high enough, or maybe more. But, increases should always be 25 mcg, no more or you'll stress the body. And, I think her body has been stressed enough.

    But it doesn't matter how much she has to take to get her well, you need what you need, and there is no upper dose limit. The right doctor would understand that. Her doctors are pretty clueless, it seems.

    When you have Graves, your thyroid gland is over-producing thyroid hormone to quite dangerous amounts. That's why she had her gland removed. And, that means that her TSH was very low - suppressed - for the time she had the disease (no knowing how long that way), and so, the mechanism that produces TSH, could have become down-regulated. And lots of people who have had Graves, find that their TSH no-longer corresponds to the level of their Frees, the way it should. Which, isn't a problem in itself, as long as you have a doctor that understands that. But, if you have a doctor that only goes by the TSH, he's going to think she's always over-medicated, because of her low TSH, and she won't get her dose increased to the level she really needs.

    Her B12 is slightly low. It should be at least over 500. But that's another thing that doctors don't understand. They think that as long as it's in range, it's perfect.

    Her D3 is much too low, it should be around 100. And, low D3 will certainly make her feel depressed. D3 isn't 'just' a vitamin - although vitamins are pretty important in themselves - D3 is a hormone. So, it needs to be at good levels.

    You might well think her labs aren't 'too bad', if you've no experience of all this. But, the point is, there is no rigide standard of how people should feel at any given level of anything. For example, some people might feel great with a TSH over 100. But others with a TSH of 2.5, might not be able to get out of bed. It affects us all differently. Myself, with a B12 of 350, I was losing the use of my right arm - it was pretty bad! Other people might not have symptoms even with a B12 of 100. We're all individuals, and it's not fair to look at labs and say, well, that doesn't look too bad, the way doctors do. If the person has symptoms, then it is bad for that person. But I don't think doctors will ever understand that, until they experience it themselves. Labs are just rough guides, how the person feels is much more important. x

  • Sorry it's taken a few days to get back to you. I had some dental work done. My sister has been complaining for a long time about not being able to use her right side. What were your symptoms.

    Thank you for the evaluation of her labs. I will take this information with us to the new doctor.

  • My arm ached all the time, and I couldn't lift it, couldn't grab things in my left hand.

    I think I've been B12 deficient all my life. I've certainly had peripheral neuropathy in my feet since I was 27 - I remember because I was pregnant with my daughter at the time. I kept walking into walls, because my brain just didn't know where my feet were. However, my feet are very painful. Lack of nerve endings does not mean lack of pain, quite the opposite. The brain translates the lack of feeling as pain.

    Talk to your new doctor, by all means, but don't be surprised if he has no idea about any of it. Very few doctors understand the importance of B12. :(

  • Ok. And you answered two questions for me. I also was curious if you were a male or female. (smile)

    Thank you so much for everything. My sister was released from the hospital yesterday and she is back home now. She called today saying that the right side of her body felt like a big brick. And that this weighted feeling was moving to her left side. She was very down and seemed fatigued. When she was in the hospital she seemed so much better mentally. That's why they released her. I now have the task of talking her into spending money that she doesn't have to go to a new doctor. Wish me luck? And wish her luck that her symptoms are at least partly due to her thyroid problem and that she can get some relief from increasing her dose and possible her Vitamin B-12 and D-3 among other vitamins and hormones she's found to be deficient in. If anything else comes to mind or if there are any other blood test you think we should asked for please feel free to let me know.

    Thanks so much.

    Diane

  • Is she already taking vit B12 and vit D3, then? What else is she taking? How much of everything. As she's home, you can possibly get more detail out of her, now. All details help. Might be something you both think insignificant, but is actually very important. :)

  • Hi Greygoose, back in September I was caring for my sister in my home and I noticed that she had a lot of different supplement bottles and among them that I can remember was vit b12 and a D vitamin. I spoke to her yesterday and she said she was to tired to read or listen to me read her the comments from you about her hypothyroid problem and the labs. I left her with print outs of the things you told me along with the names and phone numbers of some doctors that I found through the support group. I asked her to call me if she wanted my help to try to see what is causing her illness. She really doesn't believe that the problem is her thyroid and I think she feels that I'm just needlessly dragging her to one more doctor who will tell her that there is nothing he can do for her and then she will feel even more depressed and hopeless then she feels now. So I have to wait until she calls me. Until then thank you for everything Greygoose. Keep her in your thoughts.

    Hugs,

    Diane

  • We have been watching her suffer since 2011. It started out with extreme fatigue. She said she felt as if she was dying. Then came the pain, then the weight gain, then the depression, then the anxiety and more pain. Then the changes in her personality. And shaking. It's such a long story, I don't want to take up your time, but I will just say that she wasn't taking her thyroid med right for a while and when she started taking it everyday, for a while she didn't complain about the fatigue or failing health anymore, just pain. But eventually the failing health complaint started again. I thought she had chronic fatigue. she was told that she had fibromyalgia and lupus but different doctors said no and treatments for these conditions didn't work for Vickie. I got her to a shoulder surgeon who found severe inflammation in her bursa, damage to her bicep tendon and arthritis in her clavicle. He said she had the worse inflammation in her bursa that he had ever seen and had to remove most of the bursa. The surgery helped some in that area only. So I started doing research and found this support group. over the last three years my sisters symptoms have been 30 to 40 pound weight gain, constipation/diahrrea, bold spots on scalp, nails thinning and clubbing, salivary gland inflammation, candy and ice eating addiction, purple fingers, shortness of breath, lung infections, problems sleeping, brain fog, vasovagal episodes, muscle and joint pain on upper right quadrant, bleeding in intestine (no explanation) and the anxiety and depression. I can't think of anything else right now but I might have left something out. If these electro shock therapy treatments don't help then I will have to take her to a natural path and pay out of our own pockets to see if they can help. Her Endocrinologist doesn't think these things are caused by her hypothyroidism. He says that many of these problems are hyper and he said her thyroid is gone. He said on exam that he couldn't feel the thyroid at all. His words were it's gone. One General practitioner believed that my sister was experiencing a T4 overload but the test came back in the normal range so she dropped the idea too.

  • The problem doesn't go away when you take the gland away. The Grave's antibodies are still there. Plus she has a new problem in that she now needs thyroid hormone replacement, and that can be difficult to get right if you have a clueless doc - which it sounds like she has.

    You say that when she started taking her medication correctly, she was ok for a while, then the symptoms come back. Well, that is a perfectly natural reaction, and just means she needed an increase in dose. It can be a mistake to try and keep a Graves patient 'in range', because they often need more than that. Doctors just don't know anything!

  • My sister believes the docs and she told me that she doesn't think it's her thyroid problem that is the cause of all her symptoms. However, she is suffering so much right now with feeling like her body is failing her that she said she is willing to go to a natural path with me and she is willing to take the money from her disability check to pay for at least the first visit. If this is indeed her thyroid not being properly addressed, how long does it normally take to see a person starting to feel better? I'm working on getting my sister's labs from this past september 2016. Those are the most recent ones that had to do with her thyroid. As soon as I get them I will write you back.

    Thanks for everything.

    Dburns

  • You cannot put a time on it. It's different for everyone. But, it will more than likely be slow. Everything to do with hormones is slow, which is why so many people give up. But, she could start to feel a little difference a week after the increase in dose. But, she mustn't be disheartened if she feels better, then feels bad again, because that is natural, and just means she needs another increase in dose.

  • Thank you Greygoose.

    Dburns

  • You're welcome. :)

  • I have heard of ice - addiction in connection with Pernicious Anaemia . Other of her symptoms could also be connected with P.A which is vitamin B12 deficiency caused by antibodies preventing absorption .( an auto-immune disease) Has your sister been tested for PA ? If not then I think she should be.

    She is lucky to have you .

  • Just when I was diagnosed with Pernicious Anaemia , I got an awful case of Bursitis in my shoulder . The vitamin B12 injections cured it in no time .

  • Hi Wedgewood,

    Thank you for your response. I have noted it and will be bringing it up with my sister's doctors.

    Have a good evening.

    dburns

  • Try reading "could it be B12?" By Sally Patchalok , available on Amazon .

  • Hi Wedgewood, I just watched Sally doing an interview that was posted to youtube. It was very informative. I also went to her website and got a list of test that I should asked the doctor to order for my sister to check for b12 deficiency.

    Thanks so much!

    dburns

  • I don't know if she has been tested for P.A. I will put this on the list of testing to be requested. Thanks for the information.

  • omg how do endocrinologists get away with this.. Your poor poor sister. I am speechless at the barbarity and brutality of the health care system. There needs to be more endos that specialise in thyroid hormone replacement therapy Imo.

    good luck I hope things get better.

  • Dear Bardak,

    Thank you for your positive thoughts, they are needed and greatly appreciated.

  • Hi dburns21

    I hope your sister feels better soon.. you will get excellent advice on this forum. Take care Jane xxx

  • Thank Jane. Your positive and caring thoughts help more than you may know.

    Sincerely,

    Dburns

  • Aww your sister us lucky to have a lovely sister trying to research things for her. It's hard to believe the medical profession are so ignorant about Thyroid conditions. Keep posting and let us know how your sister is. I'm new in here since Oct and I'm not being believed either! We will get there xxxx 💚

  • Aww, thank you. And yes we will get there.

    All my best to you.

    Sincerely,

    Dburns

  • dburns1121 Your description of what your sister has gone through and your devotion to getting her well is deeply moving. You have come to the right place to get support and guidance. I wish you and your sister well. 🙏

  • Thank you Solstices. All my best to you also.

    Sincerely,

    dburns

  • Everyone of you out there are so wonderful. It is 12:00 midnight here in Seattle so I will sign off for now but please know that all your responses are deeply appreciated. Have a good night or day where ever you are.

    All my best.

    dburns

  • Hi dburns21, your sister is so fortunate to have you advocating on her behalf. Her story is heartbreaking. In your internet research, you have probably already come upon these articles on the thyroid and mental health:

    hypothyroidmom.com/when-thy...

    stopthethyroidmadness.com/t...

    The latter links to a Pubmed article which might be worth a look:

    ncbi.nlm.nih.gov/pubmed/152...

    Wishing you both all the best.

  • Hi Wellness1:

    Thanks so much for your reply and all the information. I actually printed off the psychological information in June or so and started taking it to all of her doctors. Even her psychiatrist but everyone looked at her thyroid test and felt that her 125 mg of levothyroxine was doing the trick so they kept prescribing her antidepressants, anxiety medication and recommending talk therapy. I started to become warn down because I wasn't able to convince them and my sister started believing the doctors and stopped believing me. I had to her the armour but because I didn't know how to administer it, and I didn't want to hurt her. I gave up. But I am ready to start again. When I get her thyroid labs from last September I am going to write grey goose back here in the group and see what he or she has to say.

    This is overwhelming for me as I have lupus. Seeing my sister suffer and not being able to fix it and the stress of fighting with doctors because I can't explain myself adequately has caused me to start having anxiety attacks. So my goal is to get as much information from the group and take it to the natural path and see if she can help my sister. I found the name of a natural path from the groups list of doctors. She is suppose to know everything about the endocrine system because her sister had thyroid disease and she wanted to help her. She's in Everett Washington, about 1 hour drive from my home.

    Thank you again for sending the websites to me. I have printed the articles off again and I am going to take them to the hospital and leave them for the attending psychiatrist.

    Have a great day!

    Dburns

  • Hi dburns,

    I'm so sorry to hear you have your own serious health matters to deal with. It is stressful acting as a caregiver (as you well know), so please make sure to look after yourself as best you can.

    I'm glad you found a health care practitioner in your area. She sounds promising. Everyone here will be hoping for the best for your sister and for you!

    Take care,

    W1

  • Thank you Wellness1.

    dburns

  • Wishing your sister a speedy recovery. She is lucky to have you fight her corner for her, I too have sister like that. She is worth her weight in gold. Good luck thinking of you both xx

  • Hi Greenfingers,

    Thank you so much for your kind words. I am so glad to know that you have someone that you know loves you 100%. #Blessed

    Have a great day!

    dburns

  • This is an extreme example of where doctors know far less than they should.. I have similar concerns for an elderly relative who has gone under the radar. I believe that she needs T3, but that her body is badly crying out for B12 due to PA (pernicious anaemia), but her GP is coming up for retirement and is a dope and won't get her tested. This is a typical problem a lot of us with underactive thyroids have if we're not optimally treated.

    The neurological effects of having an undertreated thyroid and low b12 are just as you've described. In my experience, the only person who's got anywhere fast with their health and the NHS is someone who saw a brilliant neurologist and they managed to 'fix' three conditions in one go!

    Please check out this video v kindly posted by Shaws at the weekend...

    healthunlocked.com/thyroidu...

  • Oh, and if you've not got time to watch the video straight away here's a symptom checker for B12 deficiency..

    pernicious-anaemia-society....

  • Watched the video and printed out the list of symptoms. I think she was taking b-12 supplements but I'm not sure that she was ever tested. I will put all of this information together in a packet to take to her doctor.

    Thank you so much.

    Have a great day!

    dburns

  • Hi HLAB35:

    I just finished watching the video. WOW! I'm on it!

    Thank you so much.

    dburns

  • Unless she was on methylcobalamin sublingual supplements I doubt they would have worked at all, but the irritating thing about cheapo supplements (cyanocobalamin and folic acid) is they can mask huge deficiencies in the bioavailable forms of b12 and folate. In the UK we have health food shops that make a lot of money from selling the inferior kinds of B vitamins and they sell calcium supplements by the tonne too.

  • Oh no. Sounds like my story. It's all linked to the thyroid, but all treated separately. Test results in the 'normal' range! Knee replacements, anti-depressants, vertigo pills, ointment for dry skin! Hair loss, hearing loss and total exhaustion - all untreated. Living on a permanent diet - if not weight gain makes everything worse.

  • How are you doing right now? I sure hope you have found some relief. What is working for you?

    You are in my thoughts and prayer Grandma49

    Sending you big hugs and lots of love!

    dburns

  • Hi dburns I'm sorry to hear about your sister you must be so worried, my heart goes out to you both.I also had RAi due to graves they didn't do blood test for T4/t3,, Tsh etc until 6mths later by that time I was in mental hospital with cycotic symptoms also was given anti depressants by gp when I went to them with obvious symptoms of hypothyroidism luckily for me psychiatrist realised it wasn't a mental problem.so yes you definitely can have these symptoms from under medication. Also low levels of vit B12 and D3 could be causing some of your sister's symptoms as these tend to be low in people with hypothyroidism. You definitely need to get test results asap and post on here and I'm sure you will get some good advice from knowledgeable people on here, hug's to you both.

  • Dear Raventhorpe, your email has been very helpful. Thank you so much for reaching out. Your email has given me hope.

    Thanks again.

    Big Hugs,

    Dburns

  • I think your sister needs t3 in some form, either as liothyronine or in NDT both of which you should be able to get in the States. I have heard that people who have had thyroid removed need t3 as well as t4; as someone else mentioned, look on the Stop the thyroid madness website-the author's mother had ECT. Also Lorraine Cleaver (one of the ladies who lobbied Scottish parliament) had a suicide plan before she went on t3. Her story is on the hypothyroid mom website.

  • Yes Lorraine Cleaver story is hard to believe but very inspiring!! I sent the petition to one of the Consulrants. It's being considered currently by the Scottish Parliament. Xxx

  • Hi beh1,

    Thank you so much for your reply. I'm going to add your suggestion to my list of things to speak with the new doctor about. I hope to take her to a natural path that I found through the group. I will look at the Lorraine Cleaver story as well.

    Health unlocked is a great community of wonderful supportive people. I'm so honored and blessed to have found all of you.

    Have a fantabulous day!

    dburns

  • Dear God ! how awful.. you Poor Sister

    there should be a punishment for those who are in power and who then misuse that power ...

    it's a tragic situation ... but you've come to a great place , where , as you can see, people are only too happy to share their knowledge and experience with you .. greygoose and others have lifetimes of experience , so take it all in .

    Once you print out the blood results here there'll be a rush to explain things to you ..

    Good luck to your sister and you, in your quest for knowledge.

    luv mx🌹

  • Madge1979, I don't know you but I feel a strong spirit coming from you. Full of passion, compassion and love. Your strength has touched me. I needed that.

    Hugs,

    Diane

  • Ive only just seen this - I just want to send a hug. x

  • Oh my goodness, hug received!

    Here's one for you. BIG HUG AND LOTS OF LOVE!

    Love,

    Diane

  • The test results that are essential to understanding what might be happening to your sister are :

    TSH

    Free T4

    Free T3

    Thyroid antibodies?

    Ferritin

    Iron

    Vitamin B12

    Vitamin D

    Folate

    Please note that Total T4 and Total T3, which we see quite often from American members, are useless. They don't tell you what quantities of thyroid hormone are actively available for use by the cells in the body.

    In your sister's situation, having had radioactive iodine treatment, I don't know which thyroid antibody tests would be appropriate. Perhaps greygoose Clutter could help.

    A more complete list of tests from an American source with American terminology is this one :

    stopthethyroidmadness.com/r...

    My personal suspicions, based on what you've written, is that her iron, Vitamin B12 and/or Free T3 are virtually non-existent.

    If testing shows this is the case, then I do hope you sue. Your sister's treatment has been absolutely horrific and barbaric.

    If you live in certain states in the US it is possible to get blood tests done without a doctor's approval or prescription.

    That link I gave above has lists of private labs in the US which will do work for patients directly.

  • The OP said that her sister has Graves. So, even though the gland has gone, the antibodies will still be there. Not much point in testing them, I don't think. :)

  • not much point in testing what exactly? Thanks for clarification.

    Hugs,

    Dburns

  • Not much point in testing the antibodies, given your sister's history of Graves. Those antibodies don't go away so a test will just confirm that they haven't vanished.

  • Oh, and if your sister ever had antibodies of the type associated with Hashimoto's Thyroiditis then they do disappear once the thyroid is removed. So, no point in testing them either.

  • I asked them to test her for Hashimotos and they said it came back negative.

  • Homocysteine levels are probably sky high too.. which is very dangerous.

  • I've added Homocysteine levels to the lists of things to test for.

    Thanks.

    dburns

  • Dear Humanbean,

    Thank you for the list of test. I believe my sister has had all of these test back in late summer at my request. And her general practitioners and the endocrinologist said that all of the test looked normal but I will get the labs from that period and post them so you and grey goose can take a look. I actually requested the medical records and had the labs in my possession but I sent them home with her and now that she is in the hospital I have to get one of her kids to look through her belongings to find the envelope with the lab results. Hopefully I will have it in a couple of days. I sure wish I could sue on my sister's behalf but she is not a fighter in that respect. If this turns out to be her thyroid and or a vitamin B-12 deficiency, then I would love to tell her story publicly and hopefully effect change in that way if nothing else.

    Thank you for being out here and reaching out to me. You're the best!

    Happy day!

    Dburns

  • Oh my goodness your poor sister. This is absolutely disgusting. I didn't think they did electric shock treatment anymore either, thought it had been made illegal. I have a brother with schizophrenia who doesn't have a thyroid problem so I understand just how traumatic it gets when they are detained/sectioned but in this case it seems to be evidently pointing towards her being under medicated. Hope you can sort this out for her good luck x

  • Thank you so much KatieKatie for your concern and words of encouragement. I did some research on electroconvulsive therapy and there are those who believe that it may do more harm then good and those who actually had the treatments and said without it they would probably have killed themselves. My concern is that this may not be the proper treatment for my sister's depression and anxiety because her thyroid problem is not being properly treated. So they can do all the ECT treatments they want and she will never get well until the true cause of the symptoms is addressed. Katie, I fell off the wagon and handed my sister back over to her adult daughters and her regular doctors because I was overwhelmed but I'm back and resolved to get this question answered once and for all.

    Thank you for so much for reaching out to me. You are truly a blessing.

    Hugs,

    Dburns

  • It is unlikely she is converting T4 (levothyroxine) to T3 (the active thyroid hormone) with efficiency. This kind of stuff about hypothyroid and mental illness is all over the net:

    hypothyroidmom.com/when-thy...

  • This makes me question my brothers diagnosis of schizophrenia now. I don't even know if his thyroid has ever been checked but my mum, both her sisters and myself have thyroid disorders.

  • It's very very difficult to find a practitioner who understands how to diagnose a person who has gut permeability from bad foods, a heavy environmental toxin load, nutritional deficiencies, and a thyroid system which needs both T3 & T4. Most of the practitioners who know how to do this, are private pay. Any MD who gives a patient drugs like benzos and anti-psychotics without evaluating the patient's biochemistry, is an idiot.

  • Yes and for years before the psychosis even began it was on school reports that he was in a world of his own and very spaced out. His weight also goes very up and down a lot but he also has heart problems which is also linked to thyroid conditions and does often look swollen and puffy.

  • Can you get him to do a Thyroid Check Plus 11?

  • I would but sadly he is AWOL at the moment. He runs away from the mental health people and we haven't seen him for a year. Police won't help or mental health services. He does tend to come back and does this often.

  • Fingers crossed he'll come back soon and you could suggest it then. :)

  • Hopefully yes thanks 😊

  • Katie,

    If you can ever get him back hopefully you can get him to a doctor that is in line with what we are learning here in this group about thyroid testing and vitamin B-12 testing and how to interpret them correctly. I won't take my sister to another doctor who isn't willing to look at the information that I gathered from this support group and start treating her symptoms of hypothyroidism. I'm taking her to a natural medicine doctor that I found through this group. If she says it is not my sister's thyroid then I will work with them on plan b.

    I will keep your brother in my thoughts.

    dburns

  • This is my favorite link about thyroid and cardio-vascular disease:

    valtsus.blogspot.co.uk/2013...

  • Yes, please, please see if you can get him to someone who will check the thyroid. Wouldn't it be wonderful if he could "come back" permanently?! What a horrible waste if a few cents worth of thyroid hormone was all that it would take. Thyroid / auto-immune disorders tend to run in families, and men are the worst at going for medical treatment. Here in the US, it is almost certain to require and endocrinologist to find autoimmune thyroid disease. I hope you can find the right Dr. for him. Poor thing, he must not trust anyone! (speaking of Dr.s) I don't blame him!

  • Amen.

  • Wow! I have another sister who is about 64 years old and she started having mental problems. She had graves but she juiced and prayed and her goiter went down and her eyes that had been bulging went back in her head. The doctors said that her test were normal and my sister who is very religious claimed that she had been healed by her faith in God. Now 20 years later she is acting strangely and the doctors can't figure out why. She is shaking, has anxiety and is stuck repeating herself about money non stop. I told her children that I thought something might be wrong with her thyroid and they said the doctor checked it and said it was fine. They are calling her mental condition dementia. But she can still crochet like no bodies business. Her children see me as a know it all or a meddling Aunt. They would rather except that there mother is sick and hope that the Lord will heal her if it is his will. So my hands are tied.

  • Autoimmune thyroid conditions are not detected by blood tests, but by antibodies found in the urine. Endocrinologists must find thyroid diseases like Hashimoto's or Graves, etc. It is not uncommon at all for blood tests for thryoid hormone to come back normal - and there still be something terrible wrong.

    In the Autoimmune thyroid disease Hashimoto's, the thyroid makes the hormone just fine, but the immune system kills it before it gets to the cellular level resulting in any number of serious symptoms.

    Please see if you can get this sister to go to an Endocrinologist.

  • I took her to the Endo that first diagnosed and treated her Graves disease. He told us that her labs were normal and that her because her thyroid was gone he didn't believe that her symptoms were caused from her condition. He said if I wanted to start her on the Armour he thought it was ok. I tried giving it to her but she was getting very hot so I stopped because I had no support and didn't know what I was doing. She is still taking the 125 mg or mcg Levothyroxine. I didn't want to go back to this doctor with him because I was so mad. So I'm taking her to someone that will treat my sister's symptoms and not the test. And hopefully someone that understands the test and how they relate to my sister's condition. I may have found the doctor just a few minutes ago from someone in the group who lives in the same state as I do. Wish us luck!

    Thanks so much for being willing to share your information and advice. you and all of those in this group will always have a special place in my heart.

    dburns

  • My Hashi's was detected by blood test, done by a N.D. Many here have not had good luck with MD endocrinologists. I certainly did not.

  • I understand completely. From this point forward if I can I will direct her to the doctors that I have found through the group when it comes to her Thyroid related symptoms. However, I am just her sister. I can't push myself and my beliefs on her to hard. This weekend I have to go to the hospital and asked her to sign a release of information form so that I can request her labs to share with you all. Some days she is really cooperative and other days she is so down that I can't get her to work with me. But I know what you are saying and if I have anything to say about it we will be going to a doctor that are open to treating the symptoms.

  • Sometimes .. when the Lords asleep ... we must do it for ourselves .. and I'm sure he'll be delighted that we did !

    Good luck Luvvie

    MX🌹

  • Hi Eddie83:

    I thought the same thing at first until one of her internal medicine doctors said that they got the test results back and everything looked good. I can't wait to get the labs posted so all of you can see them and give me your opinion. And I found articles on the link between mental illness and thyroid disease and took them to all of her doctors. Some really seemed to hear me but they relied on the labs instead and dropped the idea. Other's told me that I should stop looking on the internet. That seems to be the general consensus of the traditional medical community.

    Thanks so much for reaching out.

    Hope you are having a wonderful day!

    dburns

  • The devil is in the details! If they only did a TSH, the testing was meaningless. I would not go back to a doctor who tells me to "stop looking on the internet".

  • Really sorry to hear about your sister's terrible ordeal. As well as all the good advice above, I would consider her diet. If she has you or someone else to take care of her when she comes out of hospital, you could try her on the Paleo Autoimmune Protocol. Food sensitivities can cause many symptoms and many are unaware they have them. The idea with AIP is that it cuts out the most inflammatory foods, thereby giving the body a rest from fighting inflammation and a chance to heal itself. Lots of good info on this website:

    thepaleomom.com/start-here/...

    Wishing you both well x

  • Hi Josiesmum, Thank you so much for the advice. I won't be bringing my sister home with me this time. However, I am concerned that she may need to have a gluten free diet so I planned to talk to the natural medicine doctor about this. My goal is that she will be given recipes that she can either fix for herself or that someone can fix for me. The hardest thing about changing your eating habits is learning how to cook a different way. It takes time, effort and maybe even more money. As a result it is easy to go back to what you know because it is comfortable and not hard. I think this would be the case for my sister, so hopefully with a structured meal plan already prepared for her with recipes that are easy and tasty she can start eating healthy and stick to it.

    Thanks for reaching out. You guys are an amazing community of generous, loving and supportive people. I am honored to be in your presence.

    Hugs,

    dburns

  • One more thought. Here in rural America, we have something called "Nurse Practitioners", who can prescribe medicines and treatment. Many times they are cheaper than Dr.s and I know for sure take Medicare and Medicaid. There are many times very good at looking over previous tests and catching things Dr.s may miss. (Shhhhhh!)

    Just in case you don't know, you may request copies of any and all tests (or rather your sister can), and she can ask for them as she checks out of the hospital. (really, you can ask anytime - even by telephone) It is unlawful for the Dr.s and hospitals not to oblige your request. Sometimes there is a small copy charge. But well worth it for your sister's comfort in not having to go through the testing mill again.

  • Thanks dtate2016. I just got my sis to sign a request for the labs. I hope to have them in hand tomorrow at which time I can post them. Once I get feed back from greygoose and others about what the labs reveal, I will take the next step to get my sister to one of the doctors I found through the group. There is a Nurse Practitioner that I found through the group. I will give her office a call.

    Thanks for all your support.

    Dburns

  • dburns21 - Your sister needs a Functional Medicine Dr. - there are many good ones there in Seattle. I am in rural US, and travel 500 miles to see the most wonderful Functional Medicine Dr. You and your sister have many, many to choose from there in Seattle - just wait until you talk to one - you'll see. Here is one that I found in your area in a quick search. I don't know this Dr., and therefore, cannot recommend him, but he has wonderful credentials. Please, please, make a few calls and talk to these wonderful MD's. You will discover a whole new world of medicine, understanding and a wealth of knowledge on Graves Disease.

  • Sorry, here is the website: ralphgolanmd.com/practice.h... . May you and your sister find relief and an answer very soon. Real help is out there and plentiful in Seattle.

  • Dear dtate2016:

    I was given a list of doctors in our area but unfortunately, none of them accept Medicare part B for payment which is all that my sister has. We are both on disability as I have an autoimmune disease too. Money has probably been the biggest factor in why we have not been able to get adequate care for my sister. I found a naturopathic doctor from the groups lists and she charges $189.00 a visit for people who pay out of their own pocket. This is almost half of what my sister has left to live on each mother after she pays her mortgage. When my sister gets out of the hospital I plan to take her to see this doctor and my sister has agreed to pay for the first visit at least and see how the first visit goes.

    I just called the doctor's office that you gave me and they don't accept medicare as payment either. This particular Doctor charges $450.00 per hour with his first visit taking about 2 to three hours. I have called these type of practices before and have been given these type of rates. As a result I kept taking my sister back to doctors that would accept her insurance. I am going to believe and trust that the money will come. My goal now is just to get her there and everything else will work it's self out. However, I will start off with the natural doctor who's rate is $189.00. She also comes highly recommended.

    Thanks dtate,

    Have a wonderful evening

  • I'm glad you are going with her. There are some Functional Medicine Dr.s who do take Medicare - but usually they do not have fancy websites. They are usually older Osteopathic Dr.s / Holistic Dr.s. Keep looking - and asking everyone you know. People, in general, may not use the term "Functional Medicine" - some may use the term "alternative medicine". That's what I used to say.

    May I recommend that you take notes - literally with pen and paper when you go? The amount of education that we must take in to begin to wrap our mind around all that must be done in order to "heal thyself" is huge. In this place in history in which we find ourselves, we must make many changes in order to heal, and it can be overwhelming. One just can't believe how many different ways - ways that ought not to be legal (like in our food, in medicine, in air, in personal care products like perfumes, and hand lotions) and exposure that can make the thyroid sick and cause autoimmunity. One person said it well, "It's like dying from a thousand little cuts." Likewise, the healing usually comes from searching out every little cut that we discover and removing ourselves from that exposure. Personally, I think that is why mainstream medicine fails - they want a one shot cure's it all medicine, and it just does not exist - not if we are talking "cure". I have had Mainstream Medicine Dr.'s look me right in the eye and say, "We do not cure here, we just treat." The autoimmune diseases that we are facing must be healed in a reverse manner in which they were acquired. We have to "Back out" of these diseases.

    Please understand, that when I say "alternative" and "Functional" - I am not saying "Herbal Healers". Not that the Functional and Alternative Dr.s may not prescribe something along the herbal line. There are licensed MDs and Osteopaths who will help you with something other than mainstream if you ask. (They may not be quick to volunteer, because, here in the good 'ole US of A, the medical community is quick to throw the "Quack" stone) Again, you may have to ask - and many times the Dr.s are very good to say yes!

    Many have received huge benefits from nutrition / vitamins. B12 complex is huge for mental distress (liquid - up to 1000 mcg per day), Vitamin D3 (up to 5000 mg per day), probiotics (for healing the gut - learn all you can about leaky gut syndrome - may be caused by overuse of antibiotics and poor diet) Organic Apple Cider Vinegar (Braggs is a brand I would recommend) - and please be sure to follow the directions on the bottle re: dilution. These are all things that assist with the healing of perhaps more than 1 of those tiny little cuts. Just an example of what you may need to write down when you are at the Dr. visit. And if I could make another suggestion? Start writing down, right now, before you go, all of the symptoms / questions you may have about healing the disease.

    Here is wishing you success. I wish I knew where there were funds to help you with the "Cash only" Dr.s . I hear about crowd funding, etc. Perhaps you have a young one in your life that might know how to set up an online request for assistance? They set up crowd funding to pay for medical treatment for animals! People ought to be able to do it too!

    Please keep us updated on your sisters improvement. It helps each one of us to know of even small success!

  • Hi if you check out Dr Josh Axe or Anthony williams. They both say that certain blood tests may come back as normal however it can be an idea to take a supplement to help.

  • I don't have any advice.... but to say I'm so sorry to hear what your going through. It's a difficult journey, but apparently one that you (for some reason) were chosen for.......

    As for her depression and the tests coming back normal and the doctors "saying" what they will........ don't give up hope. They are human beings as well.. even if they don't act it at times !!😕And I don't think they have the definite answer to everything...they are so busy sometimes I feel as if they miss important information along the way...

    I live in the states, and I have a wonderful set of doctors that try to help me as much as possible with my pain... but you know what I find weird ?? Not one has ever asked what happened to me to cause all my injuries. You would think that would maybe be something they would want to know.... but I have a psychologist to listen about that. The doctors are rather fast with limited time, so to sit and have a decent conversation with one is difficult. I've even offered to pay for extra time, but the nurse assistant said " Mr.______, takes plenty of time to hear his patients needs, what is it your after exactly ?"

    I can only say words of understanding, and offer some sympathy and encouragement....... sorry. But maybe see another group of doctors ? Or try a medical group that incorporates Eastern and Western medecine philosophies ? But once again..... I don't put all my eggs in one basket in believing they have all the answers....it may take someone else to see something that no one did before?

    Best Wishes, and many prayers for you and sis.💕

  • Thank you so much MrsRobbinson for your thoughtful response. My I took my last Wednesday I took my sister to The Seattle Healing Arts to see a young man who is a naturopath and an ARNP. He was overwhelm by all the symptoms my sister is having. He suggested the elimination diet for four weeks and then he wanted to see her after she finished the diet. He also suggested getting a DNA study done by a company called 123 and me, as this study would give him labs that he needs to see if she is having an absorption problem. She has currently been put on an antipsychotic drug call Latuda. She is now suicidal again and having severe Anxiety with the feeling of extreme restlessness. I can't convince her to stop taking the drug even thought her symptoms are consistent with the drugs side effects and her children and her doctors won't take her off of it. I got an ER doctor to lower the dose from 60 to 40 mg but her symptoms are still there. I'm afraid that all the drugs are harming her brain and before anyone can find out what is really wrong with her they will have damaged her brain beyond repair. I try tomorrow to convince her psychiatrist to take her off the medication. I'm anxious myself because I don't want to loose my composure and raise my voice. I just come away feeling worse then when I went in. Thanks for your thoughts and prayers. My sister and I can use them.

    Sincerely,

    Diane B

  • Hello,

    I'm so sorry........ you must be exhausted, and I will set aside time to pray for her children as well !! What a scary time for everyone. I'm glad you liked the doctor in Seattle....( yeah!! Small victory there ) is he the one who has put her on the Latiuda ? If not maybe try to get ahold of him and see what he thinks since he is having her do the elimination diet.

    You sound like me in the way that you do not want to raise your voice and basically lose it with everyone ( because ultimately what good is that going to do ? ) But my oh my......... Don't I know you probably want to go bonkers !!!!! 😉 Please be aware to take a few snippets throughout your day to take care of yourself !! I feel that once your mind reaches a certain stress level your body will respond by getting sick.... example; catching a cold, stomach issues, etc...... I take care of my sister as well... it is just us, her and I . And some days are more than their share of me just sitting and having a cry in frustration !! ( I'm sure you understand ) And then I get up and say to myself "That didn't get me very far either ! ) But I love my sis to death as you do yours. Who knows what will be the reason for our journeys ? I wouldn't worry too badly about permanent brain damage from the medication, once you can get her off of it, those neurons usually find a way to heal. The brain is beautifully complex !! If your sis is simply unable to make decisions for herself , and has attempted suicide..... gather the evidential papers and approach the doctors and tell them, as your sisters health care advocate, you demand her to be taken off of this medication due to being involved with the new diet. It's called elimination, not add too....... keep me posted, hang in there, day by day. Best wishes, many prayers, and much diligence.... being sent your way.......

  • Hi MrsRobbinson, Sorry it has taken me so long to respond to your wonderful note. My sister landed back in the hospital two weeks ago after she had an adverse reaction to Latuda an anti psychotic drug used for bipolar depression. It was awful. She is having more electric shock treatments and they took her off the Latuda for about 4 days and then put her back on it but took her down from 60 mg to 20 mg. along with giving her ativan for anxiety caused by the Latuda and now giving her the ECT Treatments too. I spoke with her today and she sounds better. Not claiming the walls and wanting to jump out of her skin like she was two weeks ago. And she isn't as scared as she was even at the beginning of this past week. Thank you for sharing your story with me. It has really helped to calm me down. I was so worried about my sisters brain. I was worried that she would never recover from all the trauma caused by all these bad drugs. But your thoughts on the matter really helped me to think more positive about my sister's ability to bounce back. Thank you for that.

    I wish you and your sister the best and know that my thoughts and prayers are with you too. You are a very special person. I can feel that through your words.

    Sending you big hugs and lots of love!

    Diane

  • Also, I did get sick. This is my second cold this winter and it is the second time my sister has been in the hospital this winter.

  • Hi ya have they tested your sisters antibodies??

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