Question about hashimoto's

[Sophie2009]

Just wondering if there's anyone on here that has hashimoto's but thyoid hormones not high enough for medication. And if so what kind of symptoms. Trying to get my head around it all.

Thanks in advance 😊

[greygoose]

but thyoid hormones not high enough for medication.

Which hormones are you talking about? And, by medication, I presume you mean thyroid hormone replacement (levo)?

The need for treatment is indicated by:

high TSH (Thyroid Stimulating Hormone), a pituitary hormone

low FT4 and/or FT3, thyroid hormones.

You really need to have all three tested to know your thyroid status (and whether you need THR treatment). If your doctor just tests TSH, and calls it 'thyroid function test', then he doesn't know much about thyroid. Just testing the TSH does not tell the whole story - especially not with Hashi's, when hormone levels are likely to jump around, because the TSH always lags behind the levels of FT4/3.

If you get hold of copies of your blood test results - with ranges - and post them on here - with ranges - then we might be better able to help you. Just asking people to list their symptoms is not going to be of much help to you, because there are over 300 symptoms, and not everybody has the same. Everyone has their own, unique symptom list that is specific to them. What are your symptoms?

[Sophie2009 in reply to greygoose]

Hi thank you for your reply. I had posted my latest results a few days ago. I think you had commented on them already 😊

[greygoose in reply to Sophie2009]

ah, ok. I have no memory for names, I'm afraid.

[Sophie2009 in reply to greygoose]

That's ok. No worries 😊

[greygoose in reply to Sophie2009]

Just checked, and you're right, I did reply! lol But, I reply to so many questions. Yes, you are hypo. But, the terrible truth is that in the UK, they like you to suffer until your TSH gets to ten. (Not your thyroid hormones, they will be low, but doctors don't know about actual thyroid hormones, they only know about TSH - and don't even understand that!) And, I wish I knew what you could do about it, but can only suggest self-treating because you're never going to get that information through the thick skulls of the average GP/endo, because they just don't want to know.

[Sophie2009 in reply to greygoose]

Hi thanks for the reply. I had thought i was hypo. Am i right in thinking that symptoms can appear before it shows on a blood test? I think I can only hope that when I test again in 4/5 months that it's risen enough. Wishful thinking maybe

[greygoose in reply to Sophie2009]

Yes, symptoms can be felt before a problem shows up in the blood test, but for anybody who knows anything about thyroid - which does not include any doctors that I know of! - it's already showing. You have Hashi's, for a start, and that should be enough to alert any knowledgeable person that your actual thyroid hormone levels are not to be relied on. Plus your TSH is high. What that means is that the pituitary is having to flog the thyroid extra hard to get enough thyroid hormone out of it to keep you going. Which is not normal. A healthy, undamaged thyroid should make that much hormone with just a nudge from the TSH. Your thyroid needs a damned good kicking to get the same amount. A normal TSH, in a healthy euthyroid person, is around one. So, how can over 3 be considered normal? But, not only are the ranges totally unrealistic, the UK doctors totally ignore them and want the TSH to go up to 10 before they take any notice. The whole situation is totally abnormal.

However, if ever your TSH goes over-range, plus high antibodies, and your doctor tries to fob you off with 'only following guidelines, squire', remind him that the guidelines actually say that over-range TSH + high antibodies = thyroid hormone replacement. I'm sure someone can provide a link where it says that. Anybody?

[Sophie2009 in reply to greygoose]

Thank you so much for your helpful responses. I guess i'll just need to keep testing regularly and hope for a change. One wonders why they even have ranges if they ignore and wait till it gets to 10 🤔

Just to add my gp tested my tpo antibodies a few years ago. And they were >1000

[greygoose in reply to Sophie2009]

They ignore them because it suits their purpose: i.e. to diagnose and treat as few hypos as possible, and if they do treat to give the absolute minium dose of hormone. Quite why this is so, I don't really know, but I can't help suspecting that it's because they know so little about thyroid, they feel completely out of their depth and wish to avoid the situation. Plus, there's the ever-present question of money. That's what it's all about, these days, not patient welfare.

[Hidden]

This is me as well. I have high tpo antibodies (Graves was diagnosed) and was hyperthyroid 6 years ago, which was treated. However, for the last 2 years, I have been getting gradually worse hypo symptoms, but because my Tsh and other levels keep coming back as low normal 🤬 I am left to suffer. My symptoms are severe at the moment which is why I came back to Health Unlocked to vent. Need to get a current blood test as it’s been 6 months, but nervous to go to a hospital at the moment.

[Sophie2009 in reply to Hidden]

Sorry to hear you feel poorly. Its frustrating isn't it. My levels are starting to rise......slowly. I have been back and forward to my Dr so many times. With no success. Hence the reason going down the private route. I'll test again in 4/5 months. Feels such a long time away 😭

[Hidden in reply to Sophie2009]

It’s kind of crazy, the doctors say the symptoms could be from another undiagnosed problem, so won’t start medication, but we know ITS BECAUSE of our Thyroid!!

[Sophie2009 in reply to Hidden]

Yes that's exactly my situation. I have spoke to my gp numerous times about the fatigue. She says 'it's from an undiagnosed condition'

I have given up now with my Dr.

[Hidden in reply to Sophie2009]

So you have gone private? I haven’t tried that yet. Do you see a thyroid specialist, or an endocrinologist?

[Sophie2009 in reply to Hidden]

I did pay to see a private endocrinologist last year. My levels were lower then so she insisted no thyroid problems. It's only been the last 6 months my tsh is rising (I know that's all they look at)

[Hidden in reply to Sophie2009]

A frustrating situation indeed 😟

[Sophie2009 in reply to Hidden]

I know. Just have to wait and test again. I know the tsh rises slowly. So it may be a long wait 😔