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Autoimmune disease

Starting a trial of levothyroxine today

5 replies

Barracker · 18/04/2019 16:07

It's taken a long time to get to this part!
Years of waiting for blood results to catch up with symptoms.
TSH 5.2
TGAB +ve
Bunch of classic hypothyroid symptoms. For years. Esp hair-loss.

GP agreed to a trial of levo.
Has diagnosed me on record as "subclinical hypothyroid" but at least acknowledged this was hypothyroidism. GP agreed the symptoms were obvious, the labs confirm this, and acknowledged that with the antibodies that this was only going to end up one way.
So.
25mcg to start. I know that's small.
Repeat blood test in 6 weeks.

I'm actually relieved. Hoping I can reverse some of these symptoms eventually.

Any advice, now I'm finally on the road to treatment?

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fatpatsthong · 19/04/2019 17:03

Interested to see how you get on. I am having another blood test in July after having 2 this year where I have gone from 4.3 to 4.8 and positive antibodies. Apparently gp wants to do 1 more set of tests before she'll talk re a trial of medication.

Symptoms are getting worse - dry skin/nails, tiredness and coldness especially so keen on doing something.

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OhTheRoses · 19/04/2019 17:06

Bloody ridiculous. It needs treating.

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EggysMom · 19/04/2019 17:09

Advice? Sort out a time/routine for taking the Levo that suits you bearing in mind the guidance regarding food/drink before and after (read the leaflet for the details). Many people take it in the morning but there's no way I could then wait for breakfast and a brew. I opt to take mine just before bed.

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Barracker · 29/11/2019 17:25

An update:
Dose was gradually raised over a few months from 25 to 50 to 75.
TSH came down to 4.2 then 2.9, and then suddenly, at a dosage of 75mcg, plummeted to 0.05, with ft4 above range.
I had no hyPER symptoms at that point, but bloods were obviously not good.
So we scaled back to 50/75 alternate days.
Even so, within a couple of weeks I developed hyper symptoms (really ugh) so I stopped all levo until they subsided, which took another couple of weeks.
And then I cautiously reintroduced the levo again, starting at 25 and scaling up to 50.

However in early November I woke up with horrific vertigo and stopped the levo again, as by that point I felt dreadful and was wondering if taking the medication was actually causing me to be hyper again.

I've been off the levo for over 3 weeks, and had my routine blood test.

My TSH is now above 80 and my FT4 is 4.

WTF.

I took years waiting for my TSH to rise to a level just enough to scrape into the 'subclinical' bracket and then within 6 months I swing from slightly hyPO, to extremely hyPER and then to extremely hyPO?

So.
I think I had an episode of hashitoxicosis, where my poor old thyroid gland dumped its remaining reserves of thyroxine into my bloodstream in one go, making me hyper temporarily, but ultimately leaving me far more hypo than I ever was to begin with.

But the doctor I spoke to thinks I was simply overmedicated at 75mcg. He had no explanation for why I've suddenly swung to such an overt level of hypothyroidism although he tried to suggest that treating the subclinical hypothyroidism somehow caused the overt hypothyroidism.

What do you all think?

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Hilda44 · 18/12/2019 15:58

Ask to be referred to an endocrinologist.

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