If I Don’t Try It, I Will Never Know

A friend of Littlun was recently diagnosed with Vitamin D deficiency. His level was a mere 2 points above mine when mine was discovered (his was 9, mine was 7). We share the same GP and she told him that Vitamin D deficiency can cause insomnia. Hmmm…..I didn’t remember seeing that in the mountains of info I have read, and if that were the case, I would be sleeping better than I am. So I went off to re-visit the research and see for myself.

And you know how it is, you stumble across other things as you trawl the interwebs. This was no exception. Something caught my eye and off I went. Many hours of reading over several days ensued, and I am about to embark on an additional supplement regime.

You see, for about 20 years now, my thyroid levels have been low. Or to be more precise they are at the very bottom of the normal range, on the cusp. Even my biomedical scientist friend who does these tests every day for a living admits that these levels are arbitrary, and work on the majority of people. So, what is normal for most people is going to be low/high for a certain percent of the population.

The symptoms of low vitamin D are almost identical to the symptoms of FM. And there is a lot of cross-over of the symptoms of low thyroid, with Chronic fatigue being a major star in all of them.

And in the course of my reading, one big thought stood out in my mind – I have had food allergies from birth. Major ones. I have never eaten fish, or nuts due to the severity of my allergies, so it makes sense that I would be deficient in nutrients that are found in these foods.

What I am about to try is somewhat contraversial, it seems, but the evidence is there that as a population we are deficient in iodine. Numbers of low thyroid function are far more common than they used to be.

And don’t ever forget that the Recommended Daily Amounts of nutrients like vitamins and minerals are the MINIMUM needed to fend off deficiency. My vitamin D levels, and the fact it took 3 years to finally enter the normal band demonstrates that my RDA is hugely different to the recommended one. My blood tests have shown that unless I take a minimum of 3000 iu (international units) a day of vitamin d, my levels fall rapidly. This is far higher than the RDA.

So – adding all this up – allergies that have prevented me from getting certain nutrients, low thyroid levels, and my symptoms of FM and chronic fatigue, what I was reading made sense to me.

So, I have taken the plunge and bought the recommended supplements. Iodine, Selenium and Vitamin C.

I already take a high strength multi-vit/mineral, and I have felt better for taking it. I also feel lots better for taking the Co-enzyme Q10 and D-Ribose. I am under no illusions that any of these add-ins are a quick fix, especially when you are talking about ‘re-stocking’ an entire body at cellular level. And this last one could take a long time. But if I don’t try it, I will never know.

Basically, the body needs iodine in every cell – not just for the thyroid. It also needs a certain level of selenium. Iodine is mostly found in fish, and selenium is mostly found in nuts. neither of which I have ever been able to eat.

Iodised salt – the benefits of the added iodine are tiny. Microscopic. Plus – we are bombarded on many levels by toxins that are not beneficial, but that will be taken up by the body in the absence of iodine. Bromine/bromide is one of these. Bromide is used to make bread – although it was banned in the UK in 1990 as it was found to be toxic. But bromide was only used after the ‘scare’ that the iodine that was used was toxic. FFS!!

Bromide is also used in flame retardants that are used on matresses, clothing,car interiors, and in plastics that we come into contact with every day, and leech from the plastics into whatever is contained in them, which often we will then consume.

In the absence of sufficient nutrients that block or eliminate these toxins, we are fighting a losing battle.

So, the scary part of this is the detox. As my levels of iodine increase, the bromide will be flushed out. There is a ‘protocol’ for easing this, which is natural salt – celtic sea salt, or himalayan rock salt. I have opted for the himalayan. I am not looking forward to having to drink a quarter teaspoon of salt dissolved in water, but I am looking forward to the potential detox even less. I also have my milk thistle tincture to hand.

However, if this will boost my thyroid to within healthier bounds, it may well improve my symptoms of low energy, chronic fatigue and aches and pains. The first thing most people report is a reduction in brain fog and increased energy.

So, because it is somewhat contraversial, I am expecting some people to think me slightly mad. However, the GPs do not know everything. They know very little about nutritional therapy, and I am a strong believer in helping yourself, because the gods know that the multitude of medications that I have tried have done nothing, or made things worse for me. I have little faith in medications for FM.

But, as I say, if I don’t try, I will never know.

Wish me luck

xx

 

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20 Responses to If I Don’t Try It, I Will Never Know

  1. mariajay76 says:

    Definitely wishing you luck.. and please post your results. I am totally invested as I have fibro, vitamin D deficiency and insomnia in addition to my rheumatoid. I have experimented over the years with different supplements but I have never found any supplements useful/effective enough to make it worth the expense as supplements aren’t covered by insurance.

    Liked by 1 person

    • Moongazer says:

      Thank you 🙂 I am adding the pink salt to my food in the hope that I wont need to swallow it in water. One of the detox symptoms is acne – breakouts of spots and yep – this morning I woke up to a breakout at my hairline. So I am taking that as a good sign its starting to work.
      The first book I ever read on FM was about a woman who went from bedbound to ‘recovery’ using supplements. I tried them and saw no benefits. BUT I was also trying the drugs the drs gave me – lyrica, ametryptiline, tramadol etc etc. Since last summer when I went cold turkey from Cymbalta & I treated the withdrawal with high strength omega oils, I came to realise that we need really uber high strength supplements to feel any benefits – just like the woman who wrote the book – and I hadnt taken it on board back then. They can be expensive, I know, but branded ones can be found cheaper on amazon or ebay. The bigger the pack, the cheaper it works out to each month. But you do get what you pay for and the cheaper brands (eg supermarket own brands) are a waste of money in my experience. I dont buy as many books now as I did, for instance, but if it helps it’s worth it. And the supplements dont have to be bought or replaced all at once. You can stagger the initial purchases, start them together then stagger their replacements. That’s how I do it.
      I will post updates, definitely 😀 xx

      Liked by 1 person

    • Moongazer says:

      Ps – have your vitamin D levels improved with supplements? Do you have a vit d only one, or is it combined with calcium?

      Like

      • mariajay76 says:

        No real improvement. They are just the prescription vitamin d, a huge amount of it and my doctor encouraged me to get outside in the sun. I tend to stay inside when I’m having a hard time

        Liked by 1 person

        • Moongazer says:

          Are you in the uk? Because it seems that many drs here prescribe vit d with calcium when they shouldnt. There is a complex balance between the two – the best explanation i found of this was on parathyroid.com.
          My levels didnt start to improve until i started taking Vitabiotics brand. They are 1000iu (25 micrograms) tablets and you get 96 in a box. I get them on the 3 for £10 offer at Asda. MUCH cheaper. But I can literally double my blood levels and still be within ‘normal’ so I recently increased the dose. It takes 3 tabs per day just to maintain my level at the lowest part of the normal range. My advice is to ask for a referral to an endocrinologist as they are the experts. (((hugs)))

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          • mariajay76 says:

            I’m in the US. I am medically complicated and probably could do with an evaluation by an endocrinologist but I am overwhelmed at the moment by all that goes in to getting injections at this new pain clinic I’m trying plus everything physically and emotionally that goes along with pursuing WLS.

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          • Moongazer says:

            Then one thing at a time. I know that feeling of being overwhelmed (((hugs)))

            Liked by 1 person

  2. I don’t think you’re nuts at all for trying whatever you have researched. It certainly won’t hurt you, so trying it seems not only wholly sane, but also hopeful. I’m a big fan of supplemental and add-on remedies that you can make/buy/administer at home! Best of luck, hon and as always, lots of love!

    Liked by 1 person

    • Moongazer says:

      Thank you 🙂 It helps to know others dont think I’m a total crackpot lol
      When I realised the main source of iodine is something it is impossible for me to eat it just made absolute sense to try it.
      I really appreciate your support. My family are behind me too, which helps, but they saw first hand how much other supplements have helped me over the last year. I just wish our drs were better trained in natural medicine.
      Hope you are ok ((((hugs))))

      Liked by 1 person

      • Having doctors trained or at least willing to apply their knowledge of how the human body works (or stops working, in our cases) to our questions about nutrition and herbal supplements would be SO GREAT. Even getting them to acknowledge the big role that diet and our genes as related to what we should and should be eating/taking would be lovely, but most doctors flat out will not talk about it, or if they do acknowledge the importance of diet, it’s only in a way that makes it clear that they blame me entirely for my obesity and quite possibly believe that I have made myself this sick by being fat, and are definitely not going to give me any constructive help with improving my lifestyle in manageable steps. I’ve had my doctor repeatedly tell me not to take herbal supplements without her knowing anything about them besides that she “didn’t like the name”. What?! That’s not being a doctor, that’s being a judgemental idiot who leaps to conclusions.
        As for supplements, I take what I’ve noticed to help (Magnesium, an easily absorbable Vitamin D pill because I too had a low, low number on my blood test, and the non-synthetic Vitamins B6 and B12 because it is suspected I have several gene mutations that would make it impossible for me to absorb many nutrients in their most common forms. I sometimes take multivites with iodine in them as I was specifically told NOT to take iodine by my doctor even when my thyroid was acting all crazy like it needed some help) and am really careful when I start taking something new to watch for changes that are unusual or outside of what I would expect from myself. I usually tell the people around me to watch too, but that’s mostly not happening, so I try to take notes for the first couple of weeks, if I can. If not, I just mark the date I started taking something new on my digital calendar/to do list app and then if something really weird happens, I try to put that into my list of things to have added to my records for my doctors to investigate if they are so inclined (they’re usually not, lol). I am going to see if I can find a D.O. (Doctor of Osteopathy) who might be better trained or more willing to help me out with the kinds of intensive healing from the inside out that I want to be involved in. I don’t know how my liver and stomach haven’t melted from my too acidic diet of fruit and coffee, coupled with the fact that I am almost always too sick to eat anything but liquids (a smoothie if I’m realllllllly lucky or a giant glass of water if not) with my pills. But I do know I can’t just take the very real chance of taht happening, or stroke, or heart attack or cancer or all the other disease risk factors that go up when you have fibro. As I get closer to 30, I’m worried about my increasingly casual approach to my health, and need to completely turn that around, soon. Let me know what other supplements have helped you the most? so I can either talk to my doctor about adding them in or just do my own research as usual and try your suggestions out one at a time, but I’m definitely ready to get back to some semblance of healthy living in the next year and I’m definitely interested in whatever helps other spoonies, especially those with Fibro as we likely share some gene mutations.

        Liked by 1 person

        • Moongazer says:

          You don’t look obese. And on a diet of fruit and coffee……how is that possible? I say this, of course, as an obese person myself. Thanks to the lovely Lyrica which put 30+ lbs on me and my inability to be as active these last 6 years…..its not good. But I would never have considered you to be obese O_o
          I had great success taking amino acids instead of anti-depressants after my breakdown last year (moodcure.com has info) Omega oils were brilliant at stopping the side effects of cymbalta withdrawal.
          Most recently Co-enzyme Q10 (300mg per day) has significantly eased that “coming down with the flu” feeling that is a big part of fibro.
          I have been able to spend much more time up and about as a result.
          That was from the recent research that shows our mitochondria only function at about 50% and deficiencies were found in co-Q10 and d-ribose (and growth hormone).
          But I think this point about fibromites needing uber high strengths of vitamins etc is very valid and something most people overlook when they try supplements. Not all supplements are created equal. Magnesium is a case in point. I have tried it in combination with other vitamins said to aid absorption, but it is only since I got chelated magnesium that I am feeling a benefit. Less muscle twitches, which have been a real nightmare at times, especially when they affect my face 😦
          I have no idea how to even begin to find out about my genes here in the UK. But the endocrinologist did say my daughters were likely to be deficient in vit d too, as my mum was also found to be. Her deficiency wasnt as bad or as resistant as mine tho. But my daughters are adults and one is needle phobic so they havent been tested yet *sigh*.
          One thing for sure tho, I cannot rely on medicine to improve my health, so it’s up to me and I absolutely refuse to give up 😀

          Liked by 1 person

          • I have put almost 60 lbs since lyrica and gabapentin. I was 200lbs before that happened so i am obese, i wasn’t just throwing the word around, i know it is insulting when people do. I have a terrible metabolism after restricting my calories severely for most of high school. Honestly at 200 i felt like a curvy goddess, though. I loved my body back then and it allowed me to push myself for years, every single day both physically and mentally. It took a long time to love that body though so who knows if i will get to that point with this post illness body and all its weakness and frailty.

            Liked by 1 person

          • Moongazer says:

            We are about the same then but I am only 5ft 2 😦
            I know what you mean about post illness bodies. My restricted range of movement since I hurt my back has really changed my overall shape too as well as my weight gain and its as annoying as hell. Not only does my body no longer work as it used to, it doesnt look like it used to either!! It feels less alien than it did but it is definitely in conflict with my concept of “me”.
            ((((hugs))))

            Liked by 1 person

  3. I am glad you posted this. The last time my blood was taken for a general check , my vitamin D was 0.
    The dr said she had never seen that before. A second test came up as 0 or 1 or something
    They gave my vitamin D pills and told me to go in the sun.
    I have chronic pain and fatigue. I did not think of it being related to the vitamin D deficiency. I should do better to remember to take the supplements every day. I often forget

    Liked by 1 person

    • Moongazer says:

      Oh my word!!! Seriously, you do need to take them every day!! And they should be just vitamin D3 and not combined with calcium. The endocrinologist I saw was an expert on it and he said people had come to him in wheelchairs and after 6 mths of vit d supplements had been able to walk again. You will feel so much better once your levels are normal again.
      Vitamin d3 is involved in so many different bodily functions. Please read up on it. Also look on you tube as there are some good videos about it.
      But please – take the pills – you owe it to yourself to feel better ((((hugs))))

      Like

  4. Donna says:

    Wow wishing you luck and folliwing your progress

    Liked by 1 person

    • Moongazer says:

      Thank you Donna 😀 So far so good. It’s interesting because just last night I found a website called The Iodine Project that mentioned Fibromyalgia specifically AND included co-enzyme Q10, which we know is deficient in our cells.

      Liked by 1 person

  5. beverley says:

    I am really interested to see how this works for you. As my vitamin d was within normal and so is my thyroid. Do you know about T3 and T4 levels for the thyroid function? I don’t understand it, but my sister does, as she one of the few people that are the odd ones out. I think, but i may be wrong and will update you if i am, that the thyroid that is normally tested is T4. As her T4 is lower end of normal, like yours, she started to ask why she still had symptoms and then found out about T3. Now she takes T3 and T4 and is like a new woman.
    I must admit that our symptoms have been similar, but not the same. Since i have been on duloxetine i feel like a new woman. i wouldn’t say i was pain free and full of energy, but i sleep better, which makes everything feel better. But if i miss a dose, i really know about it, full blast.

    good luck with it all x

    Liked by 1 person

    • Moongazer says:

      Thank you 🙂 Yes, I asked for a full Thyroid panel to be done. I will ask them to repeat it in a few months to gauge any results. But you know what drs can be like, they stick to the guidelines for fear of being sued.
      Oh, please be careful with the Duloxtine. It’s brand name is Cymbalta. I took it for about 18 month – 2 years, and while I felt a bit better to start with, it turned out to be one of the worst drugs I have ever tried. I ended up getting hemiplegic migraines every single day (this is only a year ago) and the drs said it couldn’t possibly be that causing it. But the migraines stopped as the duloxetine left my system. It also made me suicidal. The lack of help I got from the NHS resulted in me doing lots of research. Coming off duloxetine is hideous – the withdrawal symptoms are absolutely dreadful. I found that amino acids were the best cure for depression, and I found one that helps with pain too – DLPA it’s called. There are forums full of people that are struggling with the effects and after effects of Cymbalta. You might be fine with it, as everyone is different, but I would be remiss if I didn’t let you know to be cautious with it ((((hugs))))

      Like

      • beverley says:

        I haven’t had any side effects from the duloxtine and i’ve been taking it for 7 months. In fact it has stopped the suicide thoughts i have had with other anti depressants, but missing a dose or taking several hours late leaves me in hell. I promise i shall keep a watch on any odd symptoms. You are also right about the Dr and shows what a sad world we live in, when they fear to treat people with medication that may help. (((hugs)))

        Liked by 1 person

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