advice needed

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I was diagnosed hyperthyroid multi nodular goiter thyroiditis presumed autoimmune 3 years ago and take PTU and propranolol. My symptoms persist although slightly better on the medicine but they dont ever go away. The menstrual cycle upsets things a lot when I get really bad days. Stress upsets things too. If I get any stress my symptoms become much worse. Last night my daughter was upset about school and doesn't want to go anymore. I am having to wait until the end of the school year to move her so I am stressed about her being unhappy plus we are moving house. The stress overwhelmed me last night I felt like I was choking. Every muscle in my body hurt and my heart wouldn't calm down even though I took extra propranolol and I was shaking and my face went numb. The smallest thing can trigger these episodes. I also suffer from chemical sensitivity and have adrenal maladaption stage 2. I tried the adrenal support natural medicine but became very ill and hypothyroidism after just 2 weeks of tiny amounts of support. I had to stop it and reduce the PTU to get my thyroid results back to normal. I feel very ill and tearful this morning with sore throat and aching muscles. I am so sick of this illness and feel like a complete failure. These symptoms are controlling my life and the more I fight to feel normal the more this illness floors me. Does anyone else go through this.

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  • Posted

    I and ohers on on this Board have posted previously about the beneficial use of addition of L-Carnitine to your meds.  You can search this Board for prior postings.  L-carnitine is an amino acid that is found naturally in the body and is available in health food stores as a supplement or by prescription from your doctor.  I take acetyl-L-carnitine though I started on the regular L-carnitine.  I find the Acetyl-L-Carnitine performs better with regard to my lab test improvements. Most hyperthyroid patients become carnitine-deficient because of their hyperthyroidism and this needs to be replaced.  That's why you have muscle problems.  You can do a Google search for the subject.  There was a research study by Dr. Salvatore Benvenga on the subject so you can search his name also.

    Many patients are also vitamin D deficient.  You can ask your doctor to test you for Carnitine deficiency and vitamin D-deficiency.

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  • Posted

    Hi Jeanette,

    Yes...I go through this! 

    To try to make a long story short...

    I've had mild adrenal fatigue for years, but like most people, we just keep going. You'll find that people with issues such as ours probably have similar personalities - worried about everyone else; keeping those we love happy; putting ourselves and our needs as low priority; always feeling like we have to "be productive." Does this sound like you (maybe even a little?).

    I was married for almost 20 years and have 2 children. Five years ago I became depressed and just lost all my drive (I have a Masters degree and was very successful, careerwise, for many years). 

    I suddenly realized I wanted out of my marriage, but things didn't really go as planned and I ended up in an emotionally and physically abusive relationship after my divorce for over 3 years. I finally got out of that relationship but it scarred me pretty bad. I couldn't get my life back together and couldn't even find a way to support myself financially, not for lack of trying!

    Last year I ended up back at my parents' house, staying with them, trying to recover. My kids are with their Dad full-time (2000 miles away) because I basically have had chronic stress for a few years now. Emotionally, my world fell apart, and so my body couldn't handle it. My first official diagnosis with a blood test was overactive thyroid. 

    My symptoms are severe, but I have been on the road to recovery for a couple of months now. I've had extreme fatigue; weakness in my legs so bad that I can hardly walk; heart palpitations; anxiety; depression; weepiness; moodiness; irritability. It has been a living hell. Not a lot of people understand because you don't necessarily "look" sick. It's so frustrating. 

    Fortunately, I met my fiance, who I believe saved my life, as I really didn't have a lot of family support (being at my parents only meant a bedroom for me to stay in, but that's about it). Some days I just had so much despair and helplessness. I still do sometimes. When you've had a "previous life" where you were active; made money; had lots of friends; etc...then experiencing THIS can be so tragic. 

    YES...I feel like a complete failure sometimes! I have "good days" and "bad days." My fiance supports me financially and emotionally and has been so good to me, helping me get the help I need - especially all of the supplements I take now.

    I took medication for a few months and my thyroid almost got back to normal. I still had debilitating symptoms. So I did a ton of research on my own and realized that the source of my symptoms was actually adrenal burnout. I really believe in natural remedies and herbs, and so I started on supplements that were formulated by a doctor who is an expert in adrenal fatigue. He has a great website with loads of info. You may find some answers you're looking for there. He also has a wonderful book.

    If you were taking natural remedies at the same time as prescription meds, that may be why you didn't have good results. Or maybe you were taking the wrong things. 

    Regardless, if you haven't already, please start reading A LOT and learning about your health challenges, as most doctors do not even recognize adrenal dysfunction as an issue that needs to be addressed, much less know the right way to heal it. 

    Whether it's your thyroid or adrenals or both...depending on how extreme your illness is, you may have a long road to recovery (perhaps years...and if you continue to have stress in your life...maybe it will never heal...that's how important it is to pay attention to YOU right now). The stress in your life will prevent you from recovering. This is a wake-up call to start putting yourself and your health FIRST, and to let the people around you know that you have a very serious health issue and they need to recognize it and step up a bit to help you.

    This may be something you have to get control over and start taking more time to focus on this health issue, as not doing so will only make things worse. Meditation is very calming and doesn't have to be a big deal...just 15 minutes twice a day where you can be alone and clear your mind. You can't have a racing mind 24/7, worried about everyone. 

    I, too, feel VERY fragile. The littlest things set me off and cause my body to react. But I am trying to remove stressful things from my life and focus on relaxing as much as I can. Your body needs rest and healing! Be good to it as best as you can!

    Let me know if you have any questions or would like to know more about the supplements/vitamins I take to help my condition.

    Best wishes to you as you find a healing path...



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  • Posted


    It's Veronica again!

    I just found this on the internet and thought it may apply to you...

    'Supplemental thyroid given to patients who are both hypothyroid (low thyroid) and hypo-adrenal, who are not first provided with adrenal support, will often suffer from a worsening of their symptoms. However, despite this warning in the Physician’s Desk Reference (“Thyroid hormones are generally contraindicated in patients with uncorrected adrenal cortical insufficiency.”), it is an extreme rarity for physicians to evaluate adrenal function prior to prescribing thyroid hormone replacement.'

    This also made me think of my own situation. My doctor started to only focus on my thyroid, and treating it, not thinking that my thyroid issue could be secondary to the primary issue, or source, which is my fatigued adrenals.

    The reality is if I focus on healing the SOURCE (my adrenals)...then the rest of my imbalances (such as my overactive thyroid) will also start getting back into balance, as they are interrelated.

    I have found in my research and studying several threads on this site that (in my opinion) Graves' Disease is very different than typical hyperthyroidism (i.e. overactive thyroid or thyroiditis).

    Linda, who posted on your thread, has so much knowledge and experience, and the Acetyl-L-Carnitine worked well for her and those on this site who were diagnosed with Graves. I don't have Graves, and when I tried it, I didn't have any results so I stopped using it.

    I continued my research for myself and that's what eventually got me to the truth of my own illness. It may take some trial and error on your part, so keep at it. You will find the truth of YOUR condition as you read others' posts on this site and do your own research.


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    • Posted

      Dr. Benvenga in his research worked with both hyperthyroid patients who did not have Graves and those that did and anybody with hyperthyroidism is going to be Carnitine-deficient.  The emotional stress I think contributes to the disease. Mine was certainly triggered by it so healing therapies like yoga and massage are also helpful.
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    • Posted

      Hi Veronica

      Thank you for answering me.  It's so nice to know that I'm not alone going through this as not many people understand what I'm going through. Although I'm hyperthyroid, they don't know the cause.  I don't have Graves, my antibodies are normal, the nodules are neither hot or cold.  This all began when I became allergic to various medications - dental anaesthesia and penicillin to start.  I went to an allergist to see what was happening and he decided to inject me with solu-cortef (cortisone) to lay everything low.  15 minutes later I had an anaphylactoid reaction to the cortisone.  The next day I was put on cipro (antibiotic) 3 weeks and I just got sicker and sicker.  I lost 10kg in 3 weeks and my gastroenterologis thought I had stomach cancer - luckily not so.

      For three years I saw various doctors and was told it was in my head, and then one doctor diagnosed hyperthyroidism.  The symptoms are more tolerable since taking PTU and Propranolol, but they persistantly ruin my life.  I had to leave my job and I no longer drive (panic attacks and blurred vision) often things look too long or too wide or the floor looks too close to me.  My muscles hurt and my vitamin D3 is 2.5 so I an supplementing it.  Apart from thyroid and Vitamin D the only other tests that come out abnormal is iron and ferritin.  I keep getting a feeling of being choked and I have weird reactions to things outside the house.  Malls and supermarkets make me dizzy and my throat closes up and I have a raspy voice.  The minute I step into fresh air my throat relaxes and my voice returns to normal.  I have this reaction to many things - pesticided, some perfumes, cleaning products etc.  I have to wear a mask at home to bleach and clean the bathrooms etc.

      4 weeks before I got sick I was working as an archivist, cleaning very mouldy documents so I decided to get tested for mycotoxins in December 2013.  The test result came back positive for trichothecene mycotoxins which come from mouldy paper.  I spoke to a mould specialist who told me that once the spores are breathed in they necrotise the adrenals and damage the thyroid, brain and nerve system.  He thinks that the cortisone and antibiotics would have lowered my immune system giving the mould toxins free reign to damage me.

      Luckily I have a great husband and daughter, and I have my own business although my business partner more or less runs it as I am often too sick to go in.  I am so angry with this ill health as my daughter was only 7 when I got ill and I used to take her to so many clubs, malls, swimming etc.  She has had to stop all these things from 7-13 years because I can't drive and feel too ill to take her even in a taxi. My husband is a pilot and had to retire as he couldnt be away for days at a time.  It has cost me thousands seeing different doctors with blood tests, scans and MRI's only for them to all be confused about what is causing this.

      The wost reaction I had was 3 years ago I went to a new Mall where they had just finished painting. My vision flipped upside down and I was sweating and had severe tachycardia.  My husband took me to the hospital where I was monitored for a few hours until things got back to normal.  Every muscle in my body was going into spasm and the doctors were completely baffled.

      Last year I had fluoride treatment on my teeth and within 5 minutes I had severe stomach cramps, drooling and vomiting with dizziness.  This lasted 3 months and I tested positive to hereditary coproporphyria.  I went to a porphyria center a few months later and was tested again but it came back negative.  This is all so wierd I just wish 6 years ago I hadn't had that cortisone injection.  My life may still be normal if I had refused it.

      It sounds like you have been through absolute hell but at least your life is back on track and you have met a lovely supportive man.  It is so important to have someone support you through this nightmare.  Someone who doesn't just say 'it's in your head'. 

      What supplements do you take.  I took Nutri Adrenal Extra started on 1/8th tab daily for 5 days and worked up to 1/4 tabled daily.  I became so ill I couldn't walk and my lab results showed I went hypo.  After stopping it I went back to being hyper, feeling a lot better and carried on with my normal PTU and Propranolol.  Still getting terrible days and OK days but just wish it would all go away.


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    • Posted

      My you have had quite the journey!!!  The L-carnitine research was done not on Graves patients but on patients with hyperthyroidism of any origin. It would help with the muscle weakness.  As for the rest, you might benefit from seeing a naturopath for advice on how to detoxify your body.  Also, diet is very important.
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    • Posted

      I do believe that it's possible that Dr. Benvenga's research may only apply to hyperthyroidism as a primary condition. In my readings and my own experience, I have found hyperthyroidism to often be a secondary condition, with a primary source. In my case, I believe my adrenal exhaustion (burnout) really is the source (primary), and caused my thyroid to become hyperactive (secondary). My own further proof (for MY issues) is that the acetyl-L-carnitine did nothing for my muscle weakness. It had absolutely no effect, which led me to my conclusions. When I started to take the ashwagandha and other herbs that have been scientifically proven to help with the adrenals, I had improvement immediately. Also, now that I am on a high-quality adrenal supplement regimen, along with following the diet, lifestyle, and other guidelines to help heal the adrenals, I have been progressively getting better, although I realize it is a long process. However, this is the first time I've had any relief of my symptoms. My menstrual cycle has even returned, an obvious sign that my hormones are starting to get back into balance (I hadn't had my period for several months - this also being a symptom of adenal fatigue).

      The fact that Jeanette said that she had been diagnosed with stage 2 maladaptive adrenals suggests the strong possibility that the source of her thyroid issue is her adrenals, and thus the thyroid issue may be secondary, which is why my suggestion was to address the adrenal issue first, as it may naturally resolve the thyroid issue.

      Of course, I am not a doctor, but I do LOTS of research and have been engrossed in my own health issues, and Jeanette's symptoms and story sound very similar to my own. 

      As I said in a previous note, it will most likely take some trial and error and taking control of one's own health. Eventually, with enough persistence, I believe the puzzle will be solved. I DO believe in naturopaths, but it does need to be someone who understands adrenal issues and the interrelatedness between the important glands, such as the adrenals, thyroid, pituitary, etc...

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    • Posted

      Oh Jeanette! I'm sorry you've had to go through all that. PLEASE read anything you can about adrenal exhaustion. 

      From what you've told me, it sounds like your adrenal issues stem from the "triggering" event, which would be the events that caused you to become allergic and, subsequently chemically sensitive. In articles I've read, allegies and respiratory issues absolutely have a link to the adrenals. It also sounds like you may need a parasite cleanse. PLEASE look that up, too, and do some research. They say that up to 40% of people in the U.S. have yeast, mold, and/or parasite overgrowth in their bodies. For various reasons, I believe I may have some overgrowth of yeast or parasites, too. I read that eating 3-4 cloves of RAW garlic a day for a couple of months is one of the best ways to get rid of these things. Garlic is a very powerful antiseptic/antiviral/antibacterial. I started to do this just yesterday. I chopped up the garlic and put it on top of a thai rice noodle dish I had for dinner. 

      Another thing I would love to do - and it sounds like, for you especially, it would be very helpful - is to get a hair analysis done. There is a lab in AZ that I was told about that is very good. Basically, you send a hair sample to will tell you EVERYTHING! Some labs don't do the best job, so I can find out the name of the lab in AZ if you decide you want to do this. I think with all your sensitivities, it will be well worth it and will solve your mystery once and for all. My fiance told me that hair samples will tell the entire story of a person (or an animal - Mike used to get samples done on his race horses).

      I'll get back to you on the supplements I take. Having a bad headache today and need to rest a bit...UGH...I think it's the weather.


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    • Posted

      I have recently spoken to another physician and he thinks because of the dramatic increase in my TSH with acetyl-L-carnitine that I may have a mitochondrial disorder/fatty acid oxidation disorder which is a Genetic problem of a lack of specific enzyme.  My bosses specialize in this area.  I will be seeing my Endocrinologist soon and hopefully he will do a blood test that this doctor recommended.  Also he said that Benvenga used regular L-carnitine in his studies.  I did get improvement initially with that but did not get the dramatic rise in TSH that I got with acetyl-L-carnitine.  Others here have gotten great improvement in muscle weakness using the Acetyl-L-carnitine as well as improvement in mood and sleep disorders along with some positive changes in lab results.  The Acetyl-L-carnitine gets into the nucleus of the cell more readily than the regular.  I think either one would help Graves or other hyperthyroid patients,  As far as the adrenal burnout, I think it is a chicken and egg argument.  Does one get a thyroid problem because of the adrenal burnout or does the hyperthyroidism cause the adrenal burnout?  In any case, I agree that natural treatments of either or both would be helpful.  

      I think Naturopaths are more knowledgeable about these areas than allopathic physicians.  I know there is a great deal of variation in the skills and knowledge of individual naturopaths just as there is between individual physicians.  

      I agree with you about the importance of taking control and becoming a partner in your health care.

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    • Posted

      I will look into ashwagandha and try that. 

      I have spoken to a lady that specialises in mycotoxins and the effects on adrenals etc.  She went through this herself and is a doctor but I have been told to prepare myself financially as the treatment doesnt come cheap.  I was told I mustn't go out to malls, supermarkets etc and anything I came in contact with during the time I worked with mould must be thrown away.  This just isn't possible.  I cannot and will not throw away all my furniture, clothes, curtains, daughters soft toys etc.  This illness has ruined my life and I refuse to let it ruin my families lives.  It would cost far too much to start again and all my daughters things hold special memories.  My employer asked me for my resignation when I became ill, so I lost my salary as well as my health, only to find out it is possibly my job that caused the illness, although proving it would be almost impossible. 

      I did see a nutritionalist who has great experience dealing with adrenal and thyroid issues.  He is the one that got me to try the adrenal extra supplement but I became so ill I had to stop it.  My cortisol level is as follows:

      on waking: 32.9 (normal 12.0-22.0)

      4 - 5 hours later: 3.8 (normal 5.0-9.0)

      4 - 5 hours later: 4.3 (normal 3.0-7.0)

      Prior to sleep: 2.1 (normal 1.0-3.0)

      DHEA am: 0.20

      DHEA pm: 0.27

      DHEA : Cortisol Ratio 0.55 (normal 1.0-4.0)

      Comments: Resistance Stage 2 - Maladaption: This is a relatively rare scenario indicating a state of long term stressors depleting adrenal reserves in the face of an acute stressor causing an excess cortisol response.

      My urine thyroid levels showed hypothyroidism but I'm not sure if the PTU would have affected it as if I try to cut my PTU dose down a bit I become hyper very quickly.

      It is said that the body runs in 7 year cycles.  Hopefully in July next year when I reach my 7th year all this will go away on its own, but I will try to see the speciallist again in the summer.

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    • Posted

      Thanks for your reply Linda.  I will look into all the health supplements and try them to see if they can help.  Anything is worth a try as anything is better than living with this.
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