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Sucking it up and asking for input

Discussion in 'Other Health Conditions and Diabetes' started by JoKalsbeek, Jun 30, 2020.

  1. JoKalsbeek

    JoKalsbeek Type 2 (in remission!) · Well-Known Member

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    Hi Folks,


    Yeah, I’m asking the hive mind for help. I have a suspicion something’s wrong, but I don’t know quite what yet. So I want to pick your brains, if that’s okay.

    So there’s a few things going on, and while I know they’re not directly diabetes-related, they do involve diet. And no-one knows our way of eating and the options we have, like you guys. I want to know what is wisdom here. And no, not asking for a diagnosis, that’s what I’m working with my GP for right now, but I also know she’s against fasting of any kind. And I want to get input with all dietary options considered, not with a bunch ruled out from the get-go.

    Getting to the point. Or points, plural, so please keep reading even if some things don’t touch your area of expertise, okay?

    My thyroid’s messed up. It’s swollen etc, and my doc checked my levels: turns out I’ve been overstimulating with too high a dosage of levothyroxine, given to me due to hypothyroidism/Hashimoto’s. My dosage has been reduced to 100 micrograms a day (4 years ago I was at 175 micrograms), and in a few hours I’m due for an ultrasound to check whether the swelling is actually a goiter or cancer. I’m hoping it’s neither, because I seriously do not want to be operated on, so fingers crossed there. In any case, the medication stimulating my thyroid’s been overdoing it. Normally, HYPERthyroidism, even medicinally induced, would cause weight loss. I, on the other hand, have been steadily gaining weight.

    I eat a ketogenic diet combined with IF, usually eat two meals a day, more often than not, with a 4 or 5 hour eating window. Back when I first started on a dietary road to better health, I was moderately low carb. Meaning I ate about trice the mount of carbs, if not more, than I do now. BUT…. Weight gain, still. My fasting blood sugars yesterday were 6,7. My HbA1c, which was 32 on moderate LCHF, has risen to 36. I know, still in the normal range, but it’s weird, isn’t it? I was 75,5 kilo’s two years ago on LCHF, now I’m back at 84 kilo’s or thereabouts on Keto. Insane, isn't it? The thing I’m noticing? It’s ALL on my gut. My legs and arms are what you’d consider “normal”, but it’s my gut that’s big. I’m not getting fat in proportion, like I was before this whole thing. My legs aren’t tree trunks, neither are my arms. Bloated on some days, not all the time, and then usually in the evening. (I do have IBS, but haven’t noticed much of it since going low carb). Now I’m experiencing pain in the liver area again, which is what got me to go to the doc 4 years ago in the first place, where I ended up with a diagnosis of extreme fatty liver disease and diabetes….

    One more thing to make the picture complete: my bloodwork came back; after a long time doing absolutely fine, my cholesterol (ratio’s) are somewhat off. And my ferritin is too high. (Should be in the 15 to 150 range, mine’s 206). Now, too much iron can create deposits in the liver and pancreas, causing various things, like waterbelly, NAFLD, and diabetes. How those levels got so high, you ask? Well…. I’ve been eating way more fish than is recommended. That's entirely on me. It’s the only way I have to keep my vitamin d deficiency a little under control, as the supplements give me massive migraines for weeks on end. Guess eating fish every day doesn’t agree with me though. I’ve signed up to be a blood donor to deplete the iron, but they don’t need any right now, (just my luck), and I’m in the process of discussing this iron suspicion with my doc, but she was out yesterday. But it would make sense, I guess, if something’s going on that’s iron related…?

    So now I don’t know what to do. I’m cutting out, for the moment, fish, spinach and red meat, trying to get my iron-overload fixed. But I am unsure on what to do with my morning numbers going so high… Do I take fasting further and let my liver just dump like mad in the interim? Try OMAD or several days’ fasts? I know if I fast I get my weight down, but if I am more active on a weekend and eat twice or three times because I do get hungry, the weight on my gut comes right back. So I feel like fasting’s a temporary solution, and I need to find the root cause of why my gut’s doing what it is doing, as it seems to be making my insulin resistance that much worse. (Which, of course, visceral fat would)


    What would you do/try in my shoes?

    Thanks people!

    Jo


    PS: It took me a long time to ask this because I felt like a fraud. I see people doing wonderfully on the Nutritional Thingy, while I’m failing miserably. But I just feel like there’s something affecting my blood sugars and body other than my diabetes, and I need to figure out what it is.
     
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  2. Mummybear3

    Mummybear3 Type 2 · Well-Known Member

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    Oh jo, don’t ever feel like a fraud. You’ve been so wonderful with you advice on here. Particularly with me and I’ve seen what you’ve posted to others. Firstly, I pray you don’t get the results you fear today and that everything is relatively harmless and easily treated. I don’t feel I can’ offer any answers to what your asking because I have no clue of what your health concerns are. But I just wanted to say hope someone can relate to what your queries are and maybe give you some welcomed advice. Sending you a virtual hug and I have my fingers crossed for you xxx
     
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  3. JoKalsbeek

    JoKalsbeek Type 2 (in remission!) · Well-Known Member

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    Thank you, I appreciate that. <3 :)
     
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  4. Goonergal

    Goonergal Type 2 · Moderator
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    Hi @JoKalsbeek

    Sounds like you have a real puzzle to solve and you’ve done absolutely the right thing asking here.

    Based on absolutely nothing other than it’s my go-to when things are going a bit awry, I’d try an extended period of OMAD (or two smaller meals in a very short window of no more than 4 hours if that’s easier for you to manage) and get carbs as low as possible.

    I’ll be very interested in the results - especially around ferritin (high levels of that here too) and really hope you get to the bottom of this and please don’t think you’re failing; you’re not. Something is obviously wrong and you’re trying to sort it out. That’s a winner in my book.
     
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  5. JoKalsbeek

    JoKalsbeek Type 2 (in remission!) · Well-Known Member

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    Thanks, @Goonergal , that makes me feel better. I've had a talk with my husband this morning and sent him a link on extended fasting and OMAD, so he knows he'll be eating by himself for the time being. I'm also looking into carnivore (bring back the carbs as much as possible). I don't know about the UK, but since Corona, the price of all variatons of meat's gone up quite a bit. That complicates things some, but ah well.

    A 4-hour eating window is what I'm starting from, so.... OMAD and extended fasts it'll have to be. I'll try and keep you posted on the ferritin, but I don't know when my next test on that will be.

    Thanks again. It really does make me feel better.
    Jo
     
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  6. LooperCat

    LooperCat Type 1 · Expert

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    Obviously we can’t diagnose, and can’t actually see you - but the swelling made me think Immediately of ascites, and Your description made me think possibly liver problems. I hope you get to the bottom of this xxx
     
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  7. ziggy_w

    ziggy_w Type 2 · Well-Known Member

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    Hi @JoKalsbeek,

    First of all, a big virtual hug for your health worries. You are such a truly kind and supportive person.

    Can't really think of anything off-hand, but wonder if an insulin test and a cortisol test have been included in your lab panel? Gaining weight in spite not changing diet (and thyroid as a cause ruled out) might possibly point towards higher insulin or cortisol levels (especially in light of where on your body you tend to gain weight).

    Keeping my fingers crossed that you find out what's causing this and that it will be fixed soon.
     
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  8. Brunneria

    Brunneria Other · Moderator
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    Hi Jo
    Sorry you are in this situation.
    I can't really speak to you on extended fasting, because it isn't something that my body gets on well with, both physically and emotionally.

    However, a few other things from your post jump out to me.

    Have you had a FULL thyroid panel done? And if so, is your doc up to interpreting it?
    The normal (cheap) thyroid tests done here in the UK (no idea what is done for you, where you are) do NOT tell the whole story, and a surprising number of even highly qualified endocrinologists fail to understand what the full panel results mean. Or how to treat the various issues shown.
    I know that @DCUKMod has had some useful information by visiting thyroid forums.

    If the weight around your middle comes back in a single weekend of adding in a third meal a day, then it is not gaining the weight back. Weight does not go on like that after one or two extra keto meals. Something else is happening causing inflammation, water retention, or something. You may be having a reaction to something (you mention fish). My guts object if I overload on eggs. And gluten (and there is gluten in even some keto foods). Also FODMAPS. Fasting is fab, partly because it is a total elimination diet. But if you just go back to eating exactly what you were eating before, then you could just be walking back into the same situation. I suggest that you reintroduce foods systematically, starting with a single food that you are sure you tolerate well.

    Also, maybe - just maybe - it would be worth asking for investigations into more than your thyroid.
    The endocrine system works together, with different glands working in concert, and an imbalance in the hormonal production in one gland can have serious implications to other glands. The pituitary gland is known as the master gland, acting like a conductor to the other members of the orchestra, such as the ovaries, adrenals and thyroid.
    In my own case I have a benign tumour of the pituitary gland (partially treated). This means that it pumps out too much prolactin, which has all sorts of implications to my weight, appetite, and a few other things. Likewise, I have a benign tumour (untreated) in one of my adrenals, which (I think) is also affecting my dawn phenomenon and stress hormone reactions. The increased hormonal output from my pituitary and one of my adrenals doesn't happen in a vacuum. It has widespread knock on effect elsewhere, and my hormonal system is kinda wacky, from PCOS (cause? effect? unrelated?). My thyroid always tests 'normal' on the standard cheap tests. I don't believe it for a second, but frankly, in my case, at the moment, that is the least of my problems. Things can always change in the future ;) My point is that they all interact, and the pituitary pulls the strings. Or doesn't.

    Why am I telling you this?
    Not because I think you have the same issues as me.
    But because keeping the hormonal system balanced is like a plate spinner, keeping 20+ plates spinning at any one time.
    If something goes out of wack, as your thyroid has, then everything else goes into flux, reshuffles, and attempts to compensate. And a new balance is found. But this places strain on other things.

    In your place, I would be asking for some very comprehensive tests (my tumours were found on an MRI, and since then the endocrinologists have only focused on the biggest problem (the pituitry), and have never shown the slightest interest in dealing with the other issues that I have to deal with daily, which are knock on effects of the wacky plate spinning my body is required to do.

    Hope that makes sense.
    In reality, I have no idea how to get an orthodox health team to treat a multifaceted problem as a holistic problem, since I have never experienced such treatment. Every time I get a referral to an expert, their area of expertise just looks at one area, not the whole, and when I try to connect the dots they just say 'outside my area, you would need to see a ....... for that'. I have had better results from alternative practitioners, who have a lot less tunnel vision.

    Also, you mentioned Vit D.
    low Vit D is known to influence weight, and make weight loss very difficult.
    At this time of year, you can supplement your diet with actual sun.
    My understanding is that the body can generate 50,000 units of vit D by sitting outside on a sunny day.
    That is far more than you can get from a home use supplement.
    Just for heaven's sake don't burn! As soon as your skin turns pink, the vit D production shuts down and your skin switches to damage control. Start with 5 mins a day, and see what happens. In my case, the more Vit D reserves I have, the longer it takes for the burning to start.

    Hope that helps.
     
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    #8 Brunneria, Jun 30, 2020 at 8:22 AM
    Last edited: Jun 30, 2020
  9. KK123

    KK123 Type 1 · Well-Known Member

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    I can't add anything but I just wanted to say that you are NOT a fraud, you are one of the most inspiring posters on here, you take the time to help others through their issues without complaint. Sometimes I think that even when a person is doing all that they can to be healthy, sometimes other things crop up which may well be out of their control, so what do we do?, we do like YOU @JoKalsbeek, we research, we get to the Doctors and we try and find out the best way to go forward. I'll say it again, YOU are a godsend to this forum and I am thinking of you and hoping you will get to the bottom of this. xx
     
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  10. JoKalsbeek

    JoKalsbeek Type 2 (in remission!) · Well-Known Member

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    I mentioned ascites to my GP in my last e-mail, as she seemed to just think I was simply being vain at our last appointment, and haven't heard back yet. She should be in the office today so hoping to get some input. And I'm thinking my many, many cans of tuna may have made my liver quite unhappy. (Mercury?). So I'm working on it, and ordered some stuff to detox my body some. See how that pans out while the thyroid ultrasound gets looked over, should have those results later this week.

    Thank you for getting in touch and sharing your suspicions... Makes me feel like mine aren't as far fetched as I thought.
    Hugs (also to that beautiful cat)
    Jo
     
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  11. JoKalsbeek

    JoKalsbeek Type 2 (in remission!) · Well-Known Member

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    Oh my, that's.... A lot. My hormones are out of balance across the board, between chronic stress, Hashi's and PCOS. I suspect adrenal fatigue due to my always being on guard because of my anxiety issues, and, and, and... I don't see an endo anymore, but the one that "did" my thyroid is the same who saw me for the diabetes. She didn't inspire confidence, putting it mildly. Just bored, irritated because I have a mind of my own and will look stuff up besides asking questions, and eager to refer me back to my GP. I didn't get a thorough panel of course, just TSH (0.18) and free T4 (16,7). The complete panel isn't even on the GP's form. (Or I would've erased the tick and put it elsewhere..). I think my GP would refer me back to the endo if I asked her to though. Might well be the next step, after my ultrasound results come in on Thursday. And a holistic approach is too much to ask for, I already tried that and indeed, got the same response you did. "Not my area." It's all part of the same body, if one thing's out everything gets affected, but seems like the hospital doesn't agree. I'm actually thinking of seeking out an alternative healer. Because I can only research so much. (I'm keeping the Dutch branch of Holland & Barrett from bankruptcy.)

    For the moment, sunbathing is out. My D is 52 at the moment, (target range being 50 to 132), but usually I'm at 40 to 44. Hence my eating insane amounts of tuna. (Turns out salmon is a better choice far as mercury goes, but I didn't know that until just now). There was some dire weather forecast this weekend, so I just figured we'd be out walking in the rain, which was supposed to pour all day, the whole day. It turned out to be a 27 degree, dry and sunny day with the exception of a 10 minute little obliterating monsoon, so I'm extra crispy at the moment. Not that it matters as it really is raining the rest of the week. ;) But we recently bought a little bench for our balcony, and I can gather courage and sit out there every now and again when the weather is good and my skin's quit being red. And I plan on going on more walks, rather than only on the weekend. Catch some D then. Anxiety really does throw a wrench in with being stressed by simple stuff like that. Just thinking about having to do that has my heart racing. Same with having to go back to the hospital for tests and an endo who want me out the door again asap, actually.

    When I was still doing LCHF rather than keto, I didn't experience the bloating I do now (I eat 15 to 30 eggs a week, daily fish, and daily cauliflower rice), so when I do eat, I'll reintroduce some of the foods I had then. First though, fasting and mainly carnivore, methinks... Elimination. Then adding in and seeing where things go awry. Somehow I have a feeling carnivore/IF is going to be it for me, but sheesh.... I'd have to miss chocolate. I don't know whether I have the backbone for that. (I wish I were kidding).

    Anyway, thank you for putting all that time in, and sharing all of that... I'm sorry you ended up with this much knowledge by having to go through it all. And so hard to get proper help!!! In any case, I appreciate it and will take it all on board.

    Basically, you rock. ;)
    Jo
     
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  12. JoKalsbeek

    JoKalsbeek Type 2 (in remission!) · Well-Known Member

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    .....Thank you....


    You've left me quite speechless. I don't do anything you and others on here don't do too.
    xx
     
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  13. Brunneria

    Brunneria Other · Moderator
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    But you do it with great grace, patience and compassion - which is more than can be said for some posters, including me, much of the time! :)
     
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  14. VashtiB

    VashtiB Type 2 · Well-Known Member

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    hi @JoKalsbeek

    I can't really add anything except my sympathies. You are most certainly not a fraud. You are an inspirational person who goes out of her way to help others. You are just amazing! I have read so many of your posts and you give guidance and help with grace and compassion. I suspect you would be surprised to know how many people think of you as life changing- I'm certainly one.

    I hope you are able to get to the bottom of what is causing the issue- our bodies are so complex at times. I am always impressed with how well you balance all of your health issues and then reach out to help others.

    Good luck and I hope you get to the answers sooner rather than later.
     
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  15. ert

    ert Type 1 · Well-Known Member

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    I'm sorry you're having a tough time. Other than not producing insulin, I don't have any other health issues but still, find it ridiculously difficult to lose weight (which was never the case before.) I've started fasting 24 hours twice a week, eating 400 calories, on those days, which works, but I find it miserable. I do it to be healthy, rather than vanity. I'd not have the motivation to do it for vanity - it's too rough.
     
  16. JoKalsbeek

    JoKalsbeek Type 2 (in remission!) · Well-Known Member

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    @Brunneria and @VashtiB , thanks, both of you. I am blushing rather a lot this morning! I needed help/hope 4 years ago, and in the Netherlands, there was none to be found. This place has given me more than I've been able to give back, to date.
     
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  17. JoKalsbeek

    JoKalsbeek Type 2 (in remission!) · Well-Known Member

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    Thank you. And hey, my vanity went out the window about a decade ago, haha. Quite understand. Only my health could get me to fast. Otherwise... I just enjoy food too much. ;)
     
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  18. LaoDan

    LaoDan Type 2 · Well-Known Member

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    Sending good vibes your way!

    Just wondering, what kind of fish are you eating? My diet is mainly fish as well, mostly salmon.. I live at the sushi bar.

    Are you getting enough fiber? I’ve been eating tons of fermented veggies, kimchi, olives, cabbage, some weird Chinese preserved veggies.. that, and psyllium husk. My theory is, getting everything moving out faster might be as affective as fasting.. now that TP is back on the shelves... ; )
     
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  19. DCUKMod

    DCUKMod I reversed my Type 2 · Master
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    @JoKalsbeek - I've got quite a bit to comment upon, but thave been tied up this morning, and still am.

    I'll get something on here this afternoon, but I just would like to say (and I'm sure it feels glibly) that I'd ask you not to panic, or worry a lot. Of course your symptoms are concerning, but as well as baaaaaaaad things, there are plenty of other things could be causing this firestorm.

    Whilst I get my other pressing stuff finished, could you tell me if you have Hashimoto's thyroiditis and what exactly were your thyroid results? Were tests done this time around antibodies, or just very basic thyroid tests?

    Even if you have thyroid nodules, they're not necessarily threatening, or need surgery.

    However, clearly all these worrying things need to be ruled out, hopefully.
     
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  20. JoKalsbeek

    JoKalsbeek Type 2 (in remission!) · Well-Known Member

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    There was a bit of salmon, but mostly, and daily, canned tuna. Didn't realise how much mercury was in there until I started reading today, so I'm guessing I'll stick with the salmon from here on in! Psyllium husk messes up my IBS, ironically enough. So I'm careful, usually take just senna to help things along. ;) I think I could do with a little more fiber though. I'm re-examining what I was eating a few years ago when I didn't have all this gut business going on, and my belly was temportarily, at least, flat... Does mean having to cook separate dinners again, as my husband hated what I was having. Ah well. I'll see how I can make that fit in a keto/IF diet.

    Thanks for the vibes and input! More to think about! :)
    Jo
     
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