Can It Not Ever Get Better?

I'm new here. I had a non-cancerous total Thyroidectomy on July 12, 2016 in Nashville, Tennessee USA. So what am I doing on a UK Support Group site?

There is no such animal here at all. There is a ton of support and accurate knowledge here. I'm grateful, but a bit concerned. Beyond my symptomology (pretty much all bad), I am beginning to wonder if there will ever be a "good" day in my life.

I am, after a more than 50 year career as an educator, a "Why?" guy. I tend to look at things rather dispassionately from a 360 degree perspective; it's where my understanding of things comes from. My family and friends are almost as worried about me as I am. Perpetual smothering fatigue, with (of course!) insomnia, increased diabetic uncontrollability, increased DVTs, and general depression and ill humor.

This is not the me I have ever been before. Ergo, the title of this post. I am double covered with medical "White Coats", including Diabetes-Specialist Endocrinologists, multiple cohorts of specialists for other (supposedly non-contributory) medical issues and processes whom I mostly trust. One of the finest health institutions in the US is 35 miles away (10 minutes by helicopter: don't ask how I know that!) at Vanderbuilt University Hospitals.

It is so hard to explain the what of how I feel, and I cannot begin to understand the "Why?" of that topic, which of course drives my anxiety through the roof!

Does it get better? Or is this yet one more thing I must get used to? It's the question I would like to most have answered. I'm looking to this community for input. You seem to be the only place for accurate and honest information, for which I am most grateful.

Thank you, in advance for your input.

11 Replies

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  • It can get better BudFields. We are used to taking meds and seeing an almost immediate effect aren't we ? With thyroid meds that's simply not the case. I am an impatient hussy but I have had to put aside my impetuosity and swallow the fact that we get better, which many of us do eventually, slowly.

    Best to you and every good wish for your feeling better

  • Rapunzel, you sound like my kinda hussy! :) Thank you for the kind words.

  • The first step to getting well, is to get hold of your medical records - especially lab test results. You need to see exactly what was tested, and exactly what the results were. I'm afraid you just cannot trust your doctors where thyroid is concerned because, unless they take a special interest in it - which very few do - they are all grossly undereducated on the subject! They only have a vague idea of how to diagnosis it - and even then, only if it's a straight-forward case - and very little idea of how to treat it - especially if it's not a straight-forward case. So, many, many people go undiagnosed and under-treated.

    When you get copies of your blood test results, post them on here - with ranges - and members will be able to help you understand them, and what step you need to take next. But, as Rapunzel says, it's a long, slow process. But you can get well again. Absolutely! :)

  • To give a more accurate read of the situation, I haven't HAD any tests since before my surgery. Reading about all the tests suggested on here, I must admit that perhaps I shouldn't have fired my 3rd Doctor (ran him out of the country, actually!) last week. I got miffed. He's a Doc about 8 days out of internship. I'm a 40 year RN, and RN instructor. I'm running a little short on patience, too. (Did I fail to mention that part?)

    All in all, a pretty astounding situation, given the situation, I think. I hate the thought of just going through them until I find a Physician. I'll try to be better. (He totally deserved it, though!) :)

  • I haven't HAD any tests since before my surgery.

    BudFields,

    Can you clarify that please... are you saying you haven't even had any thyroid hormone tests since surgery? No TSH, FT4 or FT3 test? And are you on any thyroid medication - if yes, what and how much?

    It's helpful if you add some basic info to your profile, then you can point people at that instead of potentially having to repeat yourself :) (Click on your username at top of page and select Profile)

  • Well, in that case, I'm not surprised you're short on patience! When I was very hypo, I was homicidal, I don't know about short on patience! And, there were quite a few doctors I would have quite happily run out of the country!

    It is very, very difficult to find a doctor that knows anything about thyroid, I'm afraid. But I'm afraid you're going to have to try - and quickly. You cannot live without thyroid hormone. You may still have some in your system at the moment, but it's not going to last much longer, and then things will get much, much worse! So, for the moment, any old doctor will do, as long as he tests you rapidly and puts you on thyroid hormone replacement. You can sort out the niceties later!

  • Hi BudFields and welcome, but sorry you need to be here. You've had good advice already and you've read posts about the sort of testing needed. You've probably seen about the importance of optimal levels of vitamins and minerals too so I hope you can get those tests done. Supplementing deficiencies of vitamins and minerals has helped so many people.

    I see you are diabetic. Can I just tell you about a friend of mine who was diabetic. She is very much into self help and trying natural things. She has been on metformin, and whatever else is prescribed for diabetic patients with numbers in their 20s, for a good while. (I'm not diabetic so the numbers don't really mean much to me other than low is good, high is bad) She read an article about mulberry leaves helping lower blood sugar, found a supplement and gave it a go. Not a quick fix but over time her level has come down to around 4 and she's no longer considered diabetic. Talking UK units for levels, not sure if US ones are the same. She still tests her blood sugar occasionally, still goes to the surgery for her regular checks, and her level is always low.

    Just something you might want to look into and see what you think. I hope you don't mind me mentioning it :)

  • If you've had a tt and have had no subsequent testing whatsoever then yes, things can and will get better. You're feeling so awful because your thyroid is gone and you don't yet know what's going on w your hormone replacement. When you're on a good dose of levo so your tsh is low in range and t3 and t4 are high in range, when your nutritional stuff is sorted out and your iron, d, b12, folate etc are replete, then you'll be able to assess whether or not that's good enough. This is deffo NOT good enough.

  • Do your doctors believe that the thyroid has no reason for existence and can just be removed like an appendix? The thyroid produces the hormones that keep you alive. Without thyroid hormones people eventually fall into a coma and die. You should have been started on synthroid a couple of weeks after your thyroidectomy and had regular tests (every 6-8 weeks) to establish the dose you need to keep your body ticking over happily. There is a starting dose for people with no thyroid based on your body weight - between 1.5 and 1.3mcg per kilo a day. Your after-care has been negligent and, although I am not a litigious person, I'm sure you would find a lawyer in the US who would happily support you!

    Once you have been on synthroid for a couple of years you may well find that it doesn't resolve all your symptoms. This is because a fully functioning thyroid produces T1, T2, T3 , T4 and calcitonin. Because doctors don't understand what the other things do, synthroid is only T4. Your body can in theory make as much T3 as it needs from T4, but that isn't always the case, particularly if you are low on the nutrients Seasidesusie mentions (ferritin, B12, Folate, D). Many people who have no thyroid at all find they do better on some form of NDT, but it can be a struggle to get it prescribed (particularly in the UK, France etc). So start on synthroid as soon as possible and do your research on NDT.

  • Hi, Budfields,

    I'm in California - have found this group to be valuable reading for the 8-9 months since I found it. I'm engineering-trained, very analytical and quite stubborn about not just sitting in a chair hurting while life goes one around me.

    I have several autoimmune conditions, including Hashi's and while I do still have the occasional '5 minute pity party', I've been doing better at being functional through a ton of reading, supplements and diet changes (lot of testing, it takes time).

    I get to participate now, but have to be very careful not to overdo it and to listen when my body says 'no'.

  • If you don't want to see a doctor (or can't see one for some reason), then you can get blood tests done in the US without involving a doctor.

    For labs that do testing like this then see part way down this page for contact details :

    stopthethyroidmadness.com/r...

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