Give a shout whenever you get around to it, I'll still be here. And yeah, it's Hashi's, has been for over 15 years now. And no, didn't get a complete blood panel. TSH 0.18, free T4 was 16,7. I'm on 100 micrograms of levothyroxine a day now, down from 125. (Used to be 175micrograms 4 years ago, so I guess this is progress?) Doc shot off a new form to me before I could ask for a complete work up though, but still. She promised when I'd get my next thyroid check (4 weeks, little less) she'll go over other things too. The new form includes liver function and iron, so we'll get that covered. And it seems to have sunk in that this isn't a vanity thing. She's willing enough to help, it seems, which is good. Nice not to be brushed off, like the endo would've.@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.
Hi Jo - I am so sorry you are having a tough time - you are no fraud and hey we all need help sometime and you are one of the first, if not the first to help many on here which is hugely appreciated. Sorry I am not able to offer any advice as I have no experience of your other conditions. Just sending you big hugs and hope you get everything sorted and you are feeling better soon. Take Care Mrs Xx.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.
It took me a long time to ask this because I felt like a fraud.
I won't have the results until tomorrow afternoon, as the lady only does the scanning, not the evaluation of the ultrasounds. I am dead curious though. Which should help when it comes to having to make a phone call for the results and to see what's next..! As for the rest of your very, very detailed post.... Oh my. That's... I have a feeling I have to re-educate myself about my thyroid. I know I knew a lot of stuff about it once upon a time, have read books like I did about T2, but somehow it just al faded into the background and vanished. I do seem to remember there was an antibody test done 15 years back, that came up with Hashimoto's. Once I started losing weight I needed less hormones, and according to the GP I've over-medicated. Should've checked the last decrease and gone from there, but corona happened, and well, you know how all that went when it came to regular check-ups. I have many, many symptoms from hyper and hypo overlapping, and additional conditions that could explain a bunch of those symptoms as well, so the waters are quite muddy, murky, and basically opaque as heck. Is it the Vit D (I have tried all ways of taking it except for a topical cream, guess that's next tho'.), the Sjögrens, the younameitivegotit...? Fatigue fits the bill in all of them, for instance. And I haven't been extremely fatigued in such a long time, as the low carb practically fixed that. Bummed that it's back again. (Massive understatement...). And I have to be honest: since reducing the dose last week, my thyroid isn't this rock-hard entity in my throat. It's still here and it's still swollen, but it's not as hard as it was and not strangling me as badly as it did until recently. Haven't been choking on my food for a few days anymore either. So she might not be barking up the wrong tree, as it has had some effect. After our cat (the late, great, one-eyed, blind and diabetic pirate cat Night) developed cancerous tumors, well... I'll never forget how hard they felt, those killer pebbles that took our little boy, and while I didn't feel "balls" like there were with him, my thyroid was as hard as those tumors were, so that was scary.@JoKalsbeek - How did the scan go yesterday?
@JoKalsbeek - I've been pondering your predicament a bit more, and I'll add a bit more context to my earlier contribution, to explain how I "see" how the thyroid works (or doesn't). However, a couple of things, if I may.
You didn't include your lab assay ranges with your levels? To be fair, thyroid levels seem to be fairly standard, with modest assay variations, but it's worth checking.
Secondly, you talk about hypo/hyper muddles up symptoms? Which hyper symptoms have you been experiencing?
As I understand it, with Hashi's sometimes this swinging around happens. I'm not hashi, so my reading around the specifics have been pretty high level, to be canded.
However, onto my vision of how the thyroid works.
TSH - is a signalling hormone, produced in the pituitary gland, to tell they thyroid to push out the theyroid hormone T4. It tells nothing more than how hard it is having to work, to get the thyroid into action. That's why, when this goes high, it can indicate the thyroid itself is sluggish, or ineffecient/effective.
Once diagnosed, the T4 we take each day allows the pituitary to relax, because the T4 is already present, by virtue of taking the tablets. One treatment for thyroid disease is in place, the value of TSH as a health marker is not quite meaningless, but it certainly should not be used to make any judgement on thyroid health. An exception to that would be if it continues to be very high, even with therapy in place.
T4 is a passive hormone. In itself, it doesn't do too much. In a natural state, our bodies, fiendishly clever things they are, gets on with converting the circulating T4, to make T3. This is where the exciting things happen!
T3 is the active hormone in he thyroid portfolio (although, T1 and T2 exists, it is unclear - to me anyway - exactly what they do). T3 is the magic that helps us feel better, reducing our symptoms and bringing our metabolic health back into line.
Without measuring T3 levels, nobody knows how well your T4 is actually working, and/or how well your body can convert T4 > T3. Obviously symptoms can be an indicator, but a lot of that is guess work.
Before the TSH test was discovered, all T4 dosing was done, based on symptoms, not data, but we are where we are now.
For some people, the conversion form T4 to T3 is very efficient, and they do well with just some oral T4, but for others, like me, their bodies can't for whatever reason, convert T4 to T3, so those people can end up on significantly higher doses of T4 than one might expect (based on a very rough rule of thumb, based on weight and age), with no significant impact on their T3 levels.
I reiterate, you really do have to eliminate all potential causes of this perfect storm of rubbishness you seem to be experiencing right now, but in your shoes, I would want to see an Endo who understand Hashi's and how fickle things can be if they have a flare.
Bearing in mind Hashi's is essentially an autoimmune condition, where the body sends out antibodies to attack the thyroid, that could be an explanation for your swollen, unhappy thyroid. This is what the NHS says about it:
https://www.nhs.uk/conditions/thyroiditis/#:~:text=Hashimoto's thyroiditis&text=As the thyroid is destroyed,to form in your throat.
Jo, I take from your initial post that you see less thyroid hormone as being a positive move. Thyroid hormones are a bit like insulin. A person needs what that person needs, and with Hashi's your needs can change from time to time.
I hope something in there might be helpful to you, but to be honest, Jo, I'd get myself over to HealthUnlocked and pretty much post your first post on there. If they do, they will ask for the assay ranges, to calculate how far into the ranges you are. Many people find they need to be well up in the ranges before they feel good.
They will also ask about vitamins and minerals I mentioned yesterday, because four our thyroids to work well, those levels need to be a in a decent place.
However, they are my massive learning resource for thyroid matters. My knowledge, although hard won, is still a the baby steps level, b comparison to those guys.
I feel for you. Get those ultrasound results and don't panic if they show nodules or whatever. Like many other unwelcomed lumps and bumps they can be perfectly benign, but obviously that has to be checked out.
Baby steps.... I can't call all this a baby steps level. This is a lot of information. Fount, even. And hopefully, stuff to go on... I know I should get a full panel done, but that's where the anxiety comes in: I don't dare ask for a new form right now, though it might come up tomorrow when I have to call for my results. Still, since it's the assistent I'm dealing with, I'm not counting on it. But then, 4 weeks from now I'll get another go at it. In the meantime I might be doing better with the dietary changes. Gods, I hope so. Having to walk to the hospital again, knowing the endo I'd get (and switching is not easy), kind of feels like a walk to the gallows for me. I don't know. I 'm aware I'm headed towards doing all these things, but slowly. Working up to it.And another forum... I'm okay here, but entering into a whole new one...? Yikes. People. Eek. Here at least i know what i'm talking about, there I'd be.... Lost. Like a N00b. On top of being all panicky because of there being so many people. My bloods are attached including the ranges, (sorry, it's all Dutch, but I think they make sense?), but I suppose there's a lot of information still missing. (Vits, mins, complete Thyroid etc). Also attaching a PDF with the symptoms. Not only do I tick boxes in both hyper and hypo, a lot of these symptoms show up in T2, Sjögrens, PCOS, Vit D deficiency/osteomalacia, astma, blepharitis and what have you. That makes it complicated. And that's also why I thought my fatigue 4 years ago was caused by my thyroid: I didn't think it could be something new entirely, but it turned out it was T2 wearing me down.
It's all a bit much right now, physically and mentally. I'm kind of at the end of my tether, so I'm sorry if I'm not especially coherent. I'm glad I asked for help, because without the responses here, I barely would've known where to start. And it helps that they're written down, I'll need to come back to all this and process it in bits and pieces. Like learning about diabetes all over again. I tackled that, I should be able to get a bit of a grip on this too. I hope.
Thank you, again.
Jo
....I'll try to remember to ask for the full thyroid panel when I call tomorrow, but I can't guarantee anything. Might be so high strung I'll forget. (When I get news that throws me for a loop, I can't even read the notes that should prompt me. It all turns to Chinese. Certainly did at last week's appointment). I could send out another e-mail, but I'll wait for the ultrasound's results first, so I have something to hang the request on.Jo, you need that T3 tested. Your FT4 isn't in a bad place in the range, and your TSH is suppressed. Your FT4 is certainly not dangerously high, which, if you were true hyper, you would have a a very high FT4 and T3 readings, so you have half the picture.
When taking thyroid replacement hormones (such as T4, or T3), TSH usually does go down. It's meaningless, and trying to get it up high is only putting your body under strain, in my humble, non-medical opinion.
Many UK GPs just plain old have as scant an understanding of thyroid disease. In fact, I would say, it makes their knowledge of living with diabetes look in the Einstein category.
Ideally you'd have your antibodies too, although having had a positive test (I assume), to be diagnosed Hashi in the first instance, some medics see no value in testing again, however if a flare is happening, the antibody levels would likely be elevated.
For a hyperthyroid diagnosis, the following are usually in play:
I'm really struggling to get onboard with your GP's assessment, but I feel certain you can tell that.
- TSH will be decreased in hyperthyroidism. Thus, the diagnosis of hyperthyroidism is nearly always associated with a low (suppressed) TSH level. .
- The hormones themselves - T3 & T4 will be increased. For a patient to have hyperthyroidism, they must have high thyroid hormone levels. Sometimes all of the different thyroid hormones are not high and only one or two of the different thyroid hormone measurements are high. This is not too common, as most people with hyperthyroidism will have all of their thyroid hormone measurements high (except TSH)
Honestly, Jo. You need to talk with someone who actually understands this.
You cite your anxiety as a barrier to having further testing done, but you have high anxiety due to NOT having adequate testing done. What you have now does you no favours. Having high anxiety having the tests done at least has the positive that you are actively pursuing answers. As you are now, you're stabbing in the dark; changing your diets and so on.
I absolutely know how frustrating thyroid disease is. It took me years to get a diagnosis, then more than a further year, to get to the beginning of a medication regime that actually helps me feel better and have a much improved quality of life.
I've had the challenges of working through the various barriers to wellbeing. It stinks, but sooner or later, I fear it's going to have to be done.
If you have issues arguing and communicating your case, do you have someone, maybe like your husband, who could advocate for you?
Whilst I don't have your anxiety issues, I do find some of these appointments daunting, and always find them exhausting. My OH doesn't attend with me, but we do spend time rehearsing what I think might happen, and discuss how I can argue against any counter arguments thrown my way. What I call my breakthrough appointment lasted almost 1.5 hours. I was not going until I was satisfied!
Why not go over to HealthUnlocked and have a read.
Everyone on there started out knowing very little about their conditions, and there are new members posting every day, so anything you post will be amongst others needing help.
Like any forum, you choose a user name. I never, ever use my given name on forums, as I am a very private person, so give yourself an anonymous name and go for it. If it would make you feel better, I will be happy to give you my user name over there, then you'll know you're amongst friends.
I do feel for you, but you are in a cleft stick.
Jo, I'll help you in any way I can.
Your response sounds pretty gracious to meAbsolutely Everyone,
Thank you all so much for your lovely, informative, comforting and supportive responses. I am not good at receiving compliments, but I'll try and be gracious about them.
Thank you!
Thank you!
Thank you!
Much love to you wonderful, wonderful people!
Jo
Would it be useful to you to ask for e-mail consults? I can imagine how your anxiety might mess up a good conversation by preventing you from saying or asking the right things at the right time, and hindering your capability of digesting the answers. However, you're very good with the written word, as proven by the reactions you've had on this thread.I know I should get a full panel done, but that's where the anxiety comes in: I don't dare ask for a new form right now, though it might come up tomorrow when I have to call for my results. Still, since it's the assistent I'm dealing with, I'm not counting on it. But then, 4 weeks from now I'll get another go at it.
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