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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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    I sometimes do follow up with an e-mail, so yeah.... That may be an option if I freeze up again this afternoon. Needless to say I've not slept a wink last night knowing I'd have to make the call. Don't even know what troubles me more, having to call or the possible results. Stressed either way! The last time I got an e-mail back, earlier this week, it had a form attached for a few tests, but didn't include a full thyroid panel. (I am not sure she can even order one. I don't think she can, may be for an endo to do.). In that e-mail she mentioned that my belly being caused by iron stacking didn't seem likely to her. or, more ominously, she put it"It's not the first thing I think of".Aaargh! Then what WAS she thinking of, so I can try and tackle/test for that?! Maybe the assistant will have notes for me this afternoon. These are the times though that being a mental basket case, even if I have made progress over the past few years, is still extremely frustrating.

    Liefs,
    Jo
     
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  2. DCUKMod

    DCUKMod I reversed my Type 2 · Master
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    Jo, I appreciate I'm not in the Netherlands, but my GP can order a full thyroid panel, including antibodies.
     
  3. JoKalsbeek

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

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    Awesome, that's good to know! Thank you. :)
     
  4. Antje77

    Antje77 LADA · Moderator
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    I'll be thinking of you this afternoon!
     
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  5. JoKalsbeek

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

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    Just made the call. Thyroid looks fine now, no abnormalities, so adjusting the levothyroxine dosage did have an effect. I am breathing easier and haven't been choking on my food anymore, but it's nice to hear that the ultrasound is showing the same thing. It really is shrinking, which was what I wanted. (That, and to not require any kind of surgery.) Four weeks from now there's a re-test to check dosage. I'm doing a whole lot with diet in the meantime (fasting, FODMAP, carnivore and what have you), so hopefully I'll figure out what's going on with my gut. Considering I am actually experiencing keto flu (?!), something does seem to be happening, so that's... Well, no idea what that means, but alright. ;) I might not discover on my own what it's called, but then at least what aggravates it, so I can take that to my next face-to-face appointment. Which I'll make when I go do the next blood test, when they're also going over my liver. Mind you, when I'm actually in the office I should also be able to articulate that i want, if nothing else "helps", to get a full thyroid panel. And lord knows what else. There's been so many suggestions and helpful pointers, they're going to need to draw a gallon of blood. ;)

    I can't tell you how relieved I am that that horrible thing really is shrinking. Especially recently it was becoming ever harder to breathe. Since March or so I kept thinking Corona-stress had triggered my chronic hyperventilating again, but I just really couldn't catch my breath.

    Nice to know it's not all in my head anyway. Onwards, upwards.

    And to be perfectly sappy, I love you all. Thank you for sticking with me.
    Jo
     
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  6. KK123

    KK123 Type 1 · Well-Known Member

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    Aw, we love you too!!!! So good to hear your latest news. xx
     
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  7. DCUKMod

    DCUKMod I reversed my Type 2 · Master
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    Jo, I'm so pleased you have been reassured your goitre is going down and thereby the fear of horrendous things recede too.

    I would urge you still to re-aquiant yourself with hypothyroidism and Hashi flares. I hope your reduction in meds really helps you, although you won't have the proper benefit for at least 6 weeks. T4 takes a while to impact blood levels, which is why retesting in not done under around 6 weeks from any change.

    Fingers crossed for you.
     
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  8. Mummybear3

    Mummybear3 Type 2 · Well-Known Member

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    So relieved for you Jo. I don’t have a clue really what your going through but it’s nice to hear that your feeling happier and relieved after your phonecall. Hopefully you’ll sleep tonight. Big hugs x
     
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  9. JoKalsbeek

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

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    I'm seeing the next thyroid check, in little over a month, as my dead-line. That's how much time I feel I have to re-aquaint myself with the whole throaty mess, so I know what questions to ask and what the answers mean. And then I can explain to my doc exactly why I want a full panel.

    No worries, I'm not just letting it go. ;)
    Jo
     
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  10. DCUKMod

    DCUKMod I reversed my Type 2 · Master
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    One further thing I would say is, in Hashi's T4 needs can vary, bearing in mind how flares work. Some people have very few, if any, flares, and some erratically, but annoyingly regular.

    On that basis (even simply on the basis of your Hashi's, plus meds change), in your shoes, I would want the recheck in a few weeks, plus rechecks every couple of months for a while.

    In your shoes, whilst your GP might be happier with your TSH coming up a bit, it is likely your FT4 will drop back down a bit too, which I personally wouldn't want, but much will likely depend how you actually feel, and what's happening with your weight.

    Don't forget those vitamin tests. I was utterly horrified that my B12 levels fell off a cliff even when I was on 150mcgr T4

    Good luck with it all. Keep us posted.
     
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  11. JoKalsbeek

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

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    Thank you, and I will ask all of that at the next face-to-face appointment. (I am taking notes, so I'll remember all of this). You've been absolutely invaluable, I hope you know how much it is appreciated.
     
  12. JoKalsbeek

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

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    I just read another thyroid related post and realised I never got back to you on this. The doc was very, very reluctant to test everything I asked for, but she did, while claiming it wouldn't make any difference... And guess what. ;)

    Yeah, my conversion to T3 is off.... And she didn't know what to do with that, (wouldn't prescribe cytomel as she wasn't familiar with it, and it has given me palpitations before) so she wanted to refer me back to the endo whom I basically refuse to see. So I looked up whether there was anything that'd help the T4 to T3 conversion, and I started a combined selenium, B6 and zinc supplement, taken an hour or two after my levothyroxine. My thyroid hasn't been swelling since, but I haven't had the opportunity to have a re-check done. I do feel quite a difference though. And I'm not getting choked anymore! :)
     
  13. DCUKMod

    DCUKMod I reversed my Type 2 · Master
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    In UK, Cytomel (which is just a brand name for Liothyronine - T3 hormone) is a consultant only medication, so that's who prescribes mine. The Endo is trying to persuade my GP to pick up the tab for that, but so far, no go. Provided I can continue on it (game-changer for me), they can squabble between themselves.

    If you are feeling better on your supplements, that is key to your treatment, but please do try to keep having your full panel monitored, as poorly managed hypothyroidism (symptomatic or otherwise) can have knock-on impacts, such as osteoporosis. Obviously, I'm not suggesting you have or might develop that, but it is important to bear in mind, it's a bigger picture issue.

    If you were having palpitations before, it could well be you were started on a dose you couldn't cope with initially. I have to say, I started my T3 at a level of 12.5% of my prescribed dose, in an attempt to minimise the possibility of worrying side-effects. I figured my body had been so deficient in T3 for quite some time, so a few weeks longer were unlikely to be the end of the world.

    I became very adept with a pill cutter! Those little suckers take some splitting neatly!

    When you tried Cytomel in the past was your Thyroxine reduced when you started the T3? My T4 was reduced by 50mcgr when I started T3. On my latest review, earlier this month, I have reintroduced 25mcgr to see if we can scrape up any marginal gains - cheaply and gently.

    If you were ever minded to try cytomel again, it is available in other countries, without prescription, but if you were minded to follow that course of action, you would also need to have a robust plan at your disposal for ongoing full panel testing, for titration/monitoring purposes. Thyroid hormones are powerful little devils.
     
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  14. JoKalsbeek

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

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    For the moment I'm keeping hthings as they are, as I am sort of assuming the six-week thing applies here too and I don't quite remember when exactly I started the supplements (duh), and I know my doc's running on empty as it is. So as my swelling's a non-issue any more, and that was a big indicator for me, I'm going to leave it until we see one another again at the beginning of 2021. I want a new panel done then anyway, including HbA1c and whatnot, and we'll have a lot of ground to cover. Getting a double-time appointment now doesn't seem in the cards though, and as I'm doing okay at the moment, I'll leave it at that. As for what happened waaaay back when, I think 2006 or 2007 or so... It was straight in, no chopping pills or anything, and no reduction of the levo. (And if that is not how you do it properly, it's just another illustration of my endo's incompetence. Besides her thoroughly believing I'll die without carbs and whatnot.). I dunno.... For the moment I'm doing okay again, thank heavens, as well as the help I got here, and I'm quite comfortable taking some time to see what my levels do when things calm down some for my GP. (For some reason I also want her to get my Christmas card first, with the thanks for this year's care, before bothering her again, haha.). Since it's a bit of a thing, getting tested adequately for this as well as, well, if you buy pills abroad, you never quite can be sure what's in them.... If I can manage with just the Holland & Barrett stuff, I'll happily stick with that.

    I haven't broken a toe in a year or two, which used to happen about 6 times a year before, so I don't think osteoporosis is a worry right now. (Having the osteomalacia somewhat under control helps, I guess.). But I'll keep an eye on things, thanks for the warning!

    Hugs,
    Jo, who uses the little pill guillotines for other stuff, and knows how hard it can be to get them juuuust right. ;)
     
  15. DCUKMod

    DCUKMod I reversed my Type 2 · Master
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    Just as a matter of note; my Endo suggested reducing my T4 from 150mcgr to 100 mcgr, when starting on 20mcgr T3, twice daily. On my personal logic, I reduced the T4 immediately, accepting it would take a few weeks for the then considered excess 50mcgr to be right out of my system, whilst starting on a reduced dose.

    My logic was reducing the T4 and immediately adding the full dose of T3 would be quite a wallop to my body. Of course, I may simply have not had the full benefit of the new regime as quickly as I might have done, but that was my choice.

    Whilst I share your caution about buying overseas medication, some countries where T3 is an over the counter medication would, I think, not come immediately to your mind, is asked to name a "dodgy" source, and whilst the numbers of countries is reducing, some are in the EU.

    If you have historic or current osteomylacia, are you monitored by bloods and periodic DEXA scans?

    You might find this page quite informative along the way. https://gpnotebook.com/simplepage.cfm?ID=x20130501140443685340
     
  16. JoKalsbeek

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

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    I haven't had a DEXA scan in my life, didn't know what it was till I looked it up. I've just been informed about the bloodwork around the same time I was told I was severely vit D deficient (a cause of the osteomalacia, as it happened), and the PCOS, where no mention was made about the insulin resistance that came with that, just that I'd have trouble having babies. Which is why I put it aside entirely, as that wasn't a problem for me. All of that was probably over 10 years ago, I think. As you can see, communication with specialists wasn't my strong point then, and I haven't quite forgiven some for the botched job that was made of it then and since. Follow-up is a problem, let alone actually informing patients f the conditions they're diagnosed with. It wasn't really until the rheumatism cropped up that I started googling more, and that served me well too, when the diabetes became a thing. My GP knows about the vitamin d problem and checks me regularly, but that's it. I still have bone pain, but it's not as bad as it used to be. (Wearing a bra was a nightmare on my ribs. I still buy them too loose now, though I don't think I have to anymore.).

    Guess I'll be adding these things to my GP list for next year then... She's gonna love me! (Ahem...)
     
  17. lessci

    lessci Type 2 · Well-Known Member

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    15+ years ago I had a dodgy (overactive) thyroid. My clever body was making to much T4 but converting the right amount to T3. I'd gone to the doctors with very swollen feet (think water balloons stapled to the top), Oh and I was only sleeping max 5 hours a night, but that wasn't a problem it meant I could work 80+ hours a week with no issues.They keep an eye on it now, but no issues, I just run constantly hot (saves on the heating bills) and my resting pulse is around 95bpm
     
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  18. JoKalsbeek

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

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    Seems to me like an awful lot of us are just left to our own devices. And a hyperactive thyroid, there's not a whole lot you can do about that yourself. Hasn't anyone ever mentioned shutting down your thyroid? (With a radioactive compound, if I'm putting that right). Anyway, I'm sorry you're stuck to deal with all this. :(
     
  19. lessci

    lessci Type 2 · Well-Known Member

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    Hi Jo, No need the meds they gave me corrected it after about 18months, just the high side of "normal" now, I think they jsut keep a prper eye on me now to make sure it doesn't happen again and my family history. My Dad had Graves in the early 80's they overdid the med and he went into heart failure! My Mum had 2 different types of Thyroid cancer at the same time about 10 years ago. Radiation treatment and a thyroidectomy, she'll always only be in remission, but was signed of from the cancer consultant this year, and just has to have regular blood tests and see the GP now, my younger sister is the only one not to have troubles, but she got the dodgy gall bladder.
     
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