Hello! I want to get advice on here as I’ve spoken to the doctors and don’t feel like I’m taken seriously, so hoping to hear from others with hypothyroidism.
I was diagnosed years ago, and have been pretty stable on meds the past few years. I take 100mg Mon, Tues, Wed and 75mg the rest of the week.
Over the last 8 weeks I’ve been suffering from headaches, feeling of pressure in my head, ringing in the ears, plus such bad brain fog and lack of concentration! I’ve also been shakey at times, felt my heart racing, and on one occasion shaking badly and waking up in the night. (Plus other things like getting too hot, stomach issues).
After this, I purposefully missed several days of medication, and suddenly all these symptoms have disappeared. Coincidence or could it be that my levels were too high?
I lost just over half a stone back in June/July, how much weight loss alters dosage?
Doctors seem reluctant to test as I was checked last in May.
Would be grateful to hear what others think, and people’s experience/symptoms when levels are too high. Cheers!
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Thy14
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Did you ever get to an optimal dose for you and feel well, like your old self pre hypo?
It's very common for people to initially feel better when they stop Levo. Unfortunately this effect won't last and you will get a lot of rebound symptoms some weeks or months down the road and it will take a long time to recover back to your original condition.
Weight changes can affect how much Levo you need although half a stone isn't especially significant.
Which brand of Levo do you take and do you always get the same brand at every prescription?
It's ideal if you can always get the same brand of levo at every prescription. You can do this by getting GP to write the brand you prefer in the first line of the prescription. Many people find that different brands are not interchangeable.
Could you share with us your May results? You are legally entitled to a printed copy of your results, ask at GP reception. In England you can get the NHS app and ask for permission to see your blood results on that by asking at GP’s reception.
Sometimes vitamin levels can get low if not deficient due to low stomach acid that comes along with hypo. That means we cannot absorb vitamins well from our food. In turn that means our thyroid hormone won't work well.
Have you recently or could you ask your GP to test levels of ferritin, folate, B12 & D3? Private tests are available, see link for companies offering private blood tests & discount codes, some offer a blood draw service at an extra cost. thyroiduk.org/help-and-supp...
There is also a new company offering walk in (includes free blood draw) & mail order blood tests in London, Kent, Sussex & Surrey areas. Check to see if there is a blood test company near you. onedaytests.com/products/ul...
Only do private tests on a Monday or Tuesday to avoid postal delays.
Are you already supplementing vitamin levels? If so what are you taking?
Possibly, but you won’t know unless you test. Coming off medications for a few days is also a strategy the BNF suggests to halt adverse symptoms. Recently, I did read a post from someone who was no longer in need of the medication. So, who knows?!
But, your GP is being stupid. If there is a change in symptoms then they should test.
After this, I purposefully missed several days of medication, and suddenly all these symptoms have disappeared. Coincidence or could it be that my levels were too high?
Doesn't mean anything at all, because that's what usually happens when you stop the thyroid hormone: all your symptoms disappear. But, it doesn't last long, they soon come creeping back in. The only sure way to know is to get tested.
You need to be on constant unchanging dose and brand of levothyroxine for a minimum of 6-8 weeks before you test
But perhaps GP could test vitamin D, folate, ferritin and B12 now
all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
List of private testing options and money off codes
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