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GP being overdramatic re Thyroid levels/results? (long sorry)

(11 Posts)
BrightBagLady Tue 23-Feb-16 14:29:00

I have an underactive thyroid - been taking Levothyroxine for about 4 years (though felt awful and was having levels monitored for 3 years before reaching the magic threshold prior to this).

Recently had a drug review with my GP and asked (and she agreed) for me to up my levothyroxine levels from 82.5 daily (lots of faff with pill cutting etc) to 100 micrograms daily. Reason for me asking was a lot of the niggly symptoms I had been suffering (heavy periods, cold at night, painful hormonal spots, aching hip) had begun to return. Previously a slight up in thyroxine had worked wonders at making them all go away (hence on the 82.5)

We also agreed/arranged a blood test to monitor after a few months.

I feel much, much better on the 100mcg. Periods back to normal, no longer need 27 million blankets on the bed, painful spots gone etc. No over-dose like symptoms either (had those before) - so no hot flushes, panic attacks etc.

So blood test results come through.
TSH 0.88 mU/L (0.35-5.5) <-I think stuff in brackets is the normal range
Free T4 level 20.3 pmol/L (10.0-19.8)

There was no T3 levels/test done.

So according to these results I am slightly over. But I have read/googled it can be meaningless without the T3 results. In addition from what I understand the ranges can be different depending on your NHS trust. So for example my tests are done in Cambridge. But other NHS T4 levels are ( again googled) Southend 12-22; Leeds 10-20; Gloucester 10-24.5; South Tees 10-21.

The British Thyroid Association refers to a range of 9-25.

So as far as I can tell I am probably pretty safe/normal at 20.3. Even without the T3. And symptom wise a big tick.

So (and sorry is so long) spoke to GP today and she just outright said you need to reduce your levels of thyroxine. I pointed out a few of the above facts and she got really hurumphy with me and muttered about people thinking they know what is best. She said that the other NHS trusts/test/levels were clearly different ranges/test/measurements (really? wtaf - not very likely) and that I was talking bollocks.

She then said I could continue to take to new dose but she had to warn me that long term over-dose of levothyroxine could lead to damage to the heart. She couldn't stop me taking the higher dose but had to counsel me about the risk.

She agreed to me carrying on for another 3 months and then more tests (including the t3 when I asked).

Needless to say I am going to see another GP in the practice going forward.

But - am I being foolish. Is she right? If I carry on with the 100mcg is there really such a risk? Is the small level over (Cambridge) "normal" a big risk - or is it actually proportionally not worth worrying about. Does she have a point or has she just taken umbridge because I did not immediately kowtow to her superior experience and knowledge.

My heart sinks at the thought of going back to my previous dose.

Any TSH/T4/T3 experts out there? Is my 20.3 really so awful?

Sorry so long. A bit of a rant as well as back story. Thank you.

BathtimeFunkster Tue 23-Feb-16 14:34:40

I would take the amount of levothyroxine that leaves you feeling good.

She sounds like a pain in the arse.

You are symptomatic on that ridiculous amount she had you on before. Now you feel well.

Doesn't that matter to her?

AttilaTheMeerkat Tue 23-Feb-16 15:55:49

This could well be of use to you, infact their whole website is worth a read.

HereWeArePottersBar Tue 23-Feb-16 19:37:37

Thanks Attila I had a good browse through that before I spoke to the GP (somehow I knew I'd have the response she gave).

It just seems madness - what she suggested - that 20.3 (well within the up to 25) level I had was too much.

Utini Tue 23-Feb-16 22:16:20

I'd be happy with those levels as long as your FT3 is in range when you next get tested.

Did you take your medication in the morning before having the blood test? Many people recommend getting tested early in the morning, as TSH is at its highest first thing, and not taking your thyroxine until after the blood draw, as you'll get a small spike in your FT4 after you take it.

Doing that might just push your FT4 back into range and keep your GP happy.

Pleasemrstweedie Wed 24-Feb-16 10:05:16

As you say, this is meaningless without the FT3 test. Your FT4 is a tad over range, but as you feel well and not over-replaced (edgy, anxious, a bit loose etc) I would not have thought there is really nothing to worry about. An FT3 test would clinch it though, because if your TSH is suppressed and both FT4 and FT3 are over range, then there is definitely an issue round over-replacement.

I wouldn’t worry about this to be honest. Just make sure, if you don’t already, that you get your blood test done as early in the morning as you can, that you fast before it and that you don’t take your Levo until after the test.

Ranges differ from place to place simply because the testing equipment is different. Our range for FT4 is 9-26, so here you’d be laughing. None of this is an exact science.

The object of treatment is to make you feel well. You seem to have reached that point. Hold your nerve.

NurseRosie Thu 25-Feb-16 23:12:57

My GP said it was good to be a little over but not too much. Just ask them to monitor it.
How does everyone get on with Thyroxine? I don't feel like I did before, still get very tired. I'm ok 150mcg. Tried taking in the morning and evening, I do feel better that when diagnosed but not like I did before illness. Maybe this is normal, my mummy and fellow hypothyroid says it's normal x

Sixweekstowait Thu 25-Feb-16 23:34:12

My GP says 'treat the TSH level'. So , she wouldn't worry about the T4 being a little under or over as long as the TSH is within range which yours is. I do find it irritating that with something as common as hypothyroidism, there is disparity in the response of GPs as to how to interpret results

Clarella Fri 26-Feb-16 18:23:16

Do you remember if you took your Levo in the morning or the eve before your blood test? I was told by an endo not to, and get tested in the morning. The Tsh is fine.

Every lab is different so they refer to the ref ranges for the lab. I'd wouldn't say 20 is bad at all and an endo I saw (NHS) agreed.

They worry about bone thinning in the elderly if Tsh too surpressed.

For future reference, t4 has a really long half life so you could have just taken 100 / 75 every other day.

Clarella Fri 26-Feb-16 18:25:34

You could even try X3 or X2 100 a week and 75 the other days.

Musicaltheatremum Sat 27-Feb-16 21:29:49

TSH less than 2 is fine.

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