Moments of doubt about whether I'm doing the right thing

[Jazzw]

Not my usual kind of post this one, but just wanted to get some thoughts out of my head down so they'd stop going round and around in my head. I'm sure "overthinking everything" is yet another symptom of hypothyroidism...

Does anyone else self-treating have moments of, well, the nearest word would be "panic" that they they're doing the right thing? There's no question that taking NDT has allowed me to feel a lot better. Before I started taking it a few months ago (with a TSH of 2.71 but FT4 and FT3 at the bottom of their ranges) I felt awful, exhausted all the time. I got up in the morning feeling worse than I had the night before. Everything was an effort. When I walked, I couldn't keep up with others walking with me - it felt as though I had a maximum speed (slow!) that I couldn't exceed. Even lifting my arms above my head seemed an effort.

It doesn't now. I have more energy and I feel awake in the morning. I can walk faster, my body feels lighter somehow (though I haven't lost any weight yet!). My head feels clearer - I used to get so muddled up. We're having a new kitchen soon and I had terrible trouble measuring it ahead of going to see a kitchen designer at our local DIY warehouse. If I measured the width, by the time I came to write it down, I couldn't remember what the measurement was, or I'd write down the measurement in inches when I'd measured all the other proportions in centimetres!

But still, despite all these improvements, there's a nagging voice in my head saying, "You shouldn't have started taking NDT. There was nothing wrong with your thyroid that diet and exercise couldn't fix. You're killing your thyroid once and for all - it worked before (albeit not perfectly) but now you won't ever be able to come off the medication..." etc etc.

Does anyone else feel like this, or is it just me??

[sparkly]

No, not just you Jazzw. It could have been me writing that post. Having been extremely ill on t4 and having to come off it completely. I then reluctantly started self medicating with t3. I was alive again, amazing how quickly I went from being unable to function like you, barely able to walk let alone anything else. Only leaving the house for my monthly Endo appointments, blood tests or GP appointments. To now being my usual happy self.

Fortunately I am now being prescribed it pending further blood tests next week. I just pray the results are ok and it will continue under the guidance of my Endo and new GP. I do not have the confidence to go it alone.

I, like you have doubt. Is this placebo effect, am I subconsciously making my self well or is it just a coincidence. My insecurities stem from my old GP!

I hope we can all overcome this self doubt about this illness. As most of our self doubt is brought on by the professional people who are there to diagnose and treat us in the first place.

Why does everything have to be so complicated in the thyroid world!!

Sparkly x

[Jazzw in reply to sparkly]

Thanks for your reply xx

I don't know why things have to be so hard either. Going it alone is pretty scary. But I seem to know more about what's going on in my body than my doctor does. It's just I have unwelcome thoughts that usually start "What if...?"

What if... I'm hospitalised for any reason and they don't realise I need medication?

What if... I can't get hold of my NDT?

What if... I *am* doing the wrong thing?

Etc.

I have thought about going off my NDT at some point and going back to the doctor to get officially diagnosed. But when would ever be a good time to do that?? I have a pretty full on job - not sure when I could ever spare the time to become a fully non-functioning individual!

[Spareribs in reply to Jazzw]

I'm another one who could have written that about self-doubt (I probably have!).

I lowered then came off NDT as had palps & doubts if NT was actually working after nearly a year - and Yes 'over-thinking monkey chatter' is def a Hypo symptom for me!

I felt OK for a few weeks & made an appointment for annual checkup after op with a GP that I thought may know a bit about Thyroid probs (not so far) - she tested me there and then & TSH 19.79 so a letter 'come on down' for a Levo prescription (no explanation) - on 25mcg for a month... more tired, increased to 50mcg today - shakes & palps! - but at least I know where I am.

I think it's individual whether your Thyroid can kick back in - I think my half has burned out. Good Luck J

[Jazzw in reply to Spareribs]

Thanks Sparerib. It's a funny feeling going against the medical establishment. So many people wouldn't dream of doing it. But I've never seen doctors as gods - both me and DH were nurses and have seen those halos looking less than shiny...

I think that self doubt was actually a sign I needed more NDT. I've felt so much better since I raised by a quarter grain 3 days ago!

[Spareribs in reply to Jazzw]

Yes self-doubt is another hypo symptom - I've had it ever since I can remember!

I should have pushed through per STTM but thought I'd give d'established route one more shot...

Annoying 'tho - hypo symptoms for years were 'normal' per bloods (despite 3 results over 5) - when I didn't feel particularly hypo - 'abnormal bloods' - ta da!

[Clutter]

Jazzw, it's ingrained in us that 7 years of med school and post grad education means doctors know far more than we do. On the other hand, we know our bodies and symptoms and if the treatment we're given (or not given) doesn't help us we either continue to suffer or look for other remedies.

Presumably diet and exercise didn't work to relieve your symptoms else why would you have started self medicating? The fact you've felt improvement since self medicating proves you need thyroid replacement. If you didn't need it you wouldn't feel any better and would probably be feeling worse including having the original symptoms which would have become worse. You won't destroy your thyroid function by self medicating, you are more likely to prolong the life of your thyroid gland by supporting it and will avoid other health problems associated with hypothyroidism.

Tell the nagging voice to shut up and shove off

[Jazzw in reply to Clutter]

Clutter, thanks for your reply. And no, diet and exercise have been very difficult, and at times, practically impossible. I can restrict food - for a while - but after a few days feel so awful I can't keep going. Same goes for exercise - everything starts hurting so much. It sounds like an excuse but it isn't!

Are you sure I'm not killing my thyroid by taking medication? Doesn't it just switch the thyroid off? Won't it just wither away over time because it isn't needed?

[greygoose in reply to Jazzw]

It would switch it off temporarily, yes, but if you stopped the hormone replacement, it would come back again to the best of its ability. but so what! It obviously wasn't doing a very good job before, or you wouldn't have started supplementing in the first place. However, it would save your life in a tight spot, providing it didn't last too long.

I do have proof of what I say. I was told by one doctor that my thyroid had been completely killed off by Hashi's. That there was no function left. However, for various reasons, I went off all treatment in august 2013 and didn't take anything until I asked for a blood test in around March, 2014 (because I was putting on weight!). My TSH was about 35, sure, but there was a small amount of T4 present - and I hadn't taken any T4 for years, I was on T3 only. So my poor old gland had rallied round and put out as much hormone as it could during those six months I was without replacement. I felt so proud of it! lol

Anyway, in answer to your question, NO, I don't ever doubt what I'm doing. My daughter tells me I have an over-bearing ego and never question myself. I think that might be a bit of an exaggeration, but once I've embarked on a course, I stick to it. Maybe the hypo has rendered me insensitive to doubt, I don't know, but that's me. Of course, I do have the advantage of having been diagnosed, so - although I did question the diagnosis - I don't question my self-treatment. But that's just me! lol

[Jazzw in reply to greygoose]

Grey - only just spotted this!

Thanks for your reply - that's very reassuring. In fact, I'm starting to wonder whether this self doubt is knocking about because I need a dose increase. I could do with a dose of over-bearing ego, actually. How do you get that?

I guess when I get hypo I start doing less and thinking (in circles!) more. I got quite emotional typing that post about The Biggest Loser earlier, and come to think of it, me getting emotionally irrational dissipated quite a bit when I started taking Nature Throid.

Hmm...

[greygoose in reply to Jazzw]

Yup, sounds like you could do with an increase!

How do you aquire an over-bearing ego? Don't really know. From being the black sheep of the family? Always having had to stand up for myself (and others) because I've never (until just now) had anyone to stand up for me. Wanting things that I was always told I couldn't have because I wasn't good enough but knowin I was better than all of them (oh, if my daughter could hear me now! lol)? Bringing up three children practically on my own in a foreign country where none of us spoke the language? And surviving all of that, and getting just about everything I wanted, whilst at the same time being hypo and feeling pretty ill most of the time!

No doubt other people have had worse lives, but... Not blowing my own trumpet, either, but... Moral of the story? Never believe other people's lies about you!

[Nickinoo1]

I am in a similar boat on week three of my NDT with 3/4 tablet and I feel as if my legs are new not the lead weight ones I had all December. I honestly thought I was going mad and I could neither stay awake or think.

Now my head is back, I'm working part-time although last week not far off full time and I am walking with purpose and no aching. knackered by 7-8pm and in bed but I have a life to lead, I love my life, my job, my creatures and the idea if spending another month like December scares me silly - polite version.

So do I feel guilty - no. If medical profession are prepared to let my thyroid fail, I am not. I see my sel medicating as a helping hand to my thyroid.

Am I going to tell that I take NDT when I go to hospital this week for my PT - not sure. They were quoting ranges in consultant meeting so not feeling it. No NDT today or tomorrow ready for bloods.

[Jazzw in reply to Nickinoo1]

Thanks Nickinoo. It's great that you're feeling so much better. Hope you get on ok at PT xx

[Ruthi]

Its normal, when you go against the norm, so to speak!

Actually its nothing like as bad as with the pets. Even though vets are leagues ahead of doctors in patient centred treatment, they have still been brainwashed, especially by the dog food manufacturers.

I have fed my dogs raw for the last 12 years. Each vet we see has to be educated anew, although thankfully its becoming a bit more mainstream. Every time a dog is ill, I go through this same thing. I am going against what the established experts tell me, and now my dog has liver disease/hypothyroidism/low B12/enter your disease of choice here.... If I had fed them the usual rubbish I would have a clear conscience. But I would have fed them rubbish, and to be honest, its not the raw feeding that is the cause of their problems. All my dogs are rescues, they nearly all arrived starved, beaten and generally abused. I have to accept that no amount of love and care will necessarily undo the damage of the past. My dogs are my toddler substitutes. But now I have more time to worry about them, and more money to spend than I ever had when I had real toddlers.

You HAVE to do what you believe is right for you. All of us here on this board have arrived because our thyroid treatment (or PA, or whatever it is) has fallen short of ideal. In the end only you are responsible for your life and your health. We make the decisions we do for the best of reasons, but we are doomed to self-doubt because we are making some narrow minded 'professional' feel uncomfortable. Its their problem, not yours. They SHOULD be doing all they can to support you in your decisions, they SHOULD be providing you with advice that helps you get well.

Shame on them!!!

[Jazzw in reply to Ruthi]

Yes, shame on them.

Thanks for your reply, Ruthi. Your dogs are very lucky to have you xx