Hypothyroidism - TSH of over 150...

[MrsDmitriTippensKrushnic]

Background: Family history of hypothyroidism. I was diagnosed with it after I had DS2, so around 11 years ago, and was on 175mg Levothyroxeine until early last year when due to various issues with my then GP I ended up with no GP and no meds. I was very bad and didn't get around to registering with a local GP until DS2 was ill a couple of weeks ago (we're generally pretty healthy!) and I had a blood test last week.

I get that this is Not Good, given that the hospital itself rang me on a Sunday over the results, and then my GP rang the next day to insist I came and picked up a prescription straight away instead of waiting until my appointment this morning.

My previous GP never gave me actual figures with my blood test results, and I never thought of asking tbh (my bad). From her reaction I get that 150+ for the TSH is pretty crap, but I'm slightly freaking out and a bit bemused by everyone's reaction to it. I'm kind of getting the feeling I should be feeling worse than I do, or maybe I do feel really bad but just haven't realised!

I know I need to educate myself a bit more, but googling throws up all sorts of stuff. I have to admit I've always seen this as something that's annoying rather than a real health issue. I know there's a few people on here with hypothyroidism, I remember threads from a while back, please point me in the right direction to learn more without getting confused or alternatively scold me thoroughly for being an idiot with my health

I'm disappearing for a bit as I have to take a doctors note to work, bloody asthma is playing up after a chest infection and I gather that's probably because I've been off my meds too

TIA for any help/words of wisdom

TSH of 150 is way, way, way out.

It should be between 0 and 5 but most people feel best between 0 and 2.

Hypothyroidsim is NOT something that's just 'annoying', if it's left untreated it can, in some cases, kill you. It can also cause heart problems without medication. I suspect you don't think you feel bad because you've been so long without treatment and you are used to feeling that way. I bet as soon as the medication starts kicking in you will be amazed at how much better you feel. When I forget to take mine for a couple of days I can feel the effects almost instantly and the levels don't drop that quickly.

This is a good basic starting point for info. But really you just need to accept that you have to take the tablets every single day and make sure you keep up to date with blood tests.

It's only when I've been looking into it today that I realised how interlinked it is with other other stuff that's been going on. No-one's ever said anything to me about it - I suppose I haven't known to ask, and a 10 minute GP appointment isn't really the time or place to go into things like this in depth.

That link was very helpful, thank you LadyDamerel, bit of an eye opener actually!

The thyroid controls so much of the body's key metabolism that all sorts of odd things are affected.

What dose have they put you on to start with? Are you going back for another blood test in 6 weeks or so?

I can't stress enough how much better you are going to feel when you're on the right dose of thyroxine. You'll feel like a new person .

They're putting me back onto 175mg, but building up over a couple of weeks, starting at 100 and adding 25 every 5 days and I've got to go for another blood test in 3 weeks. It feels like they're taking it far more seriously than my previous GP ever did.

I'll be interested to see how much of a difference it does make. If I finally get around to finishing the decorating that I abandoned last year, I'll be eternally grateful

When mine is low I struggle to just get through day to day jobs, never mind anything more ambitious! I occasionally mess up getting a new prescription on time so have a few days without tablets and it really really does affect me.

The TSH figure alone is not a measure of how hypothyroid you are, did they test actual hormone levels?

My sister was diagnosed with a TSH level of around 10 and takes 150 mg to get her TSH down to normal

A friend was diagnosed with a TSH level of 250 but only takes 50 mg to get her TSH down to normal.

Karstan, do you mean a full thyroid screening, with T3 and T4 levels as well?

I haven't had a full screen done for a couple of years, only TSH but my dose has steadily increased. I'm just wondering whether I should ask for a full screen at my next blood test.

LadyDamerel From what I gather, if you have been diagnosed as hypothyroid and had full blood work done initially then it's only really TSH levels that need to be tested. Keeping TSH within range and adjusting dosage based on that should be ok, especially if you're keeping your TSH in the lower end of the range (0-2).

Full blood screen would give a better indication in the OPs case of how hypothyroid she is as she's not been taking any medication for a while.

Not sure on the exact figures for the T4 (I assume T4 anyway) but I got the impression they were okay, it's just the TSH that was bad. It was a bit difficult as I had to hijack my own appointment to get a sick certificate and didn't want to take up too much of the GPs time - when I go back after the next test I'll get the proper figures. I think I need to pay more attention to the details! I guess I'm back on teh 175 because that's what I've told them I was on originally - I don't think my notes have come through yet.

I saw the request when I had the test and it was Thyroid, Renal and Liver (?). I didn't know there were different 'levels' of test. I used to have a test every 6 months, and it always just said 'Thyroid functions' on the request form and I'm pretty sure they got TSH and T4 results even though they never told me the exact figures (I'd ring, receptionist would say results were fine and I'd go pick up my prescription, rarely saw an actual GP!)

I am feeling unsurprisingly perky this weekend

when I was first diagnosed in 2008 (also post DS2) my TSH was 150 also. I was virtually suicidal, had no patience whatsoever and couldn't concentrate to the point of having to stop driving! I started on 50 and had to work up to where I am now at 175 but was a long haul starting to feel better. If you don't mind me being nosey do you mind me asking what the other effects were you think it might have been causing?