I was diagnosed with Hashimoto's in 2011. To say that it changed my life would be an understatement, which I'm would be familiar to many. I very quickly stopped using forums as, quite frankly, I just found it all too depressing. But I'm a little older, a little wiser, maybe.
I am totally useless however at trying to figure out this complex condition and just hang in there most days trying to do my best. I'm ashamed to say that I've even forgotten how to read and understand my test results which is why I am back here today! And you know when you have brain fog and can't take anything in?
Anyway, for years I've been on 100mcg Levo. To be honest I never feel any better for taking this crap, I feel like hashi's for me just swings about and does what it likes. The latest results show my Free T4 is low, borderline (I'll Paste results at end of this post). As a result I've been told to up my Levo a bit, taking 100mcg and 125mcg on alternate days. I have been advised to try this previously but just stuck with a 100mcg. Why? Because my sleep pattern are terrible, it's really the worst thing for me since this condition. And when I up to the alternate 125mcg, I feel too wired, and no better for it. My sleep is already bad and it makes it worse, I can hardly function.
I wonder if I have any alternatives medication wise these days? As I don't keep abreast of these things. I'm very much a head-in-the-sand person and just try to get through.
I have tried most things for sleep however. When I'm calm and relaxed in life it's a little better. But either the meds of the condition itself gives me huge anxiety. I'm not an anxious person by nature, it's only since diagnosis/taking the pills.
Sorry for the long post (this is the short version).
Results:-
Serum TSH level;Serum free T4 level Report, Borderline, Need to speak to doctor. Result reviewed by Dr Joanne Walters at Brough Surgery (NHS East Riding Of Yorkshire CCG) - 17 May 2022 08:05
You are still hypo. Your TSH is too high - at over 3, it is saying 'hypo' - and your FT4 is much too low - should be more like 75% through the range. So, if your FT4 is so low, your FT3 - the active hormone - will probably be even lower. So, not surprising you don't feel good. Anxiety and sleep problems are hypo symptoms.
A common cause of problems with raising levo is low nutrients. Have you had your vit D, vit B12, folate and ferritin tested?
Another cause is high/low cortisol. Have you had that tested?
I wonder if I have any alternatives medication wise these days?
Not on the NHS you don't. There is T3, of course, but that's very difficult to get prescribed, you have to jump through so many hoops. And, there's NDT, but that is even more difficult to get prescribed. So, the only alternative is self-treating and buying your own...
But, although you've been on levo for all these years, you haven't really given it a fair trial because you've always been under-medicated. So, I would suggest that you get all the tests done - get your ducks in a row, as we say - and then optimise where necessary. Then see if you can raise your levo. And it's not the fault of the levo that you can't adjust to it. It isn't crap. Lots of people do very well on it when they take it correctly - i.e. prepare their body first by optimising nutrients and cortisol.
I feel like hashi's for me just swings about and does what it likes.
Of course it does! That's exactly what it does do. That's the nature of the beast.
Hashi's is an autoimmune condition, where the immune system attacks the thyroid and slowly destroys it. And, during every attack, the dying cells deposit their stock of hormone into the blood, causing FT4/3 to rise sharply, and TSH to fall, and giving you hyper symptoms. In time, the excess hormone is used up/excreted, and you become hypo again. And, the attacks can be tiny, or they can be massive, meaning that levels fluctuate all the time. But, eventually, the thyroid dies, and then things become more stable.
So, whilst there is no cure for the Hashi's itself, we have to replace the thyroid hormone when it's low - levo is T4. Which can be difficult when levels fluctuate, but that's all we can do. Except, that we have to think about the effects on the body when thyroid hormones are low, and deal with those, too - e.g. low nutrients due to low stomach acid, and low/high cortisol due to the strain hypothyroidism pûts on the adrenals. Whatever doctors may think, or tell you, it isn't just about taking a little white pill every day. It's far more complicated than that. And most doctors are not up to the struggle - nor do they care, I have to say.
But, all is not lost. We have to learn about our own disease and take charge of our treatment. And, the first step is getting proper thyroid testing so that we know exactly where we stand:
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Thoughts On Latest Blood Test Results Pls :)
Tricky Thyroid Patient! Advice please.
Advice on test results please
Advice on new readings
