Newly diagnosed

[Loula86]

I was diagnosed as having hypothyroidism last week. I started on a dose of 50mcg levo but the dr suggested that it will likely increase once I’ve had my repeat bloods in 6 weeks as my levels were ‘very’ hypo. I’ve put 2 stone on in 1 year and have been exhausted so I’m looking forward to seeing the condition improve. I’ve seen on some posts people mention that it is a ‘life threatening’ illness. I didn’t realise that it was ‘life threatening’. Can anyone explain the implications hypothyroidism can have on my future? Thanks

[fuchsia-pink]

Welcome to the forum!

Once you are diagnosed as hypo, you are very likely to need to take your thyroid meds for life. You have been started on a low dose of levo - and for many people this works fine, although many of us take a while to get to our optimum dose.

This forum has been a life-line to those of us

* who are keen to understand more about our condition [in this context, it is worth reading some of the guides on the Thyroid UK site and helvella 's excellent abbreviations and acronyms (a pinned post on the right];

* who are frustrated with GPs whose thyroid knowledge is at best sketchy [because they do very little training in it]; and

* those who for whatever reason do not respond well to levo-only.

To get fully fit, you will be recommended to get full blood tests done - TSH, free T3, free T4, thyroid antibodies and key nutrients - ferritin, folate, Vit D and B12. This is because the NHS often only tests TSH - and this doesn't in itself let you know how much of the active thyroid hormone, T3, is actually getting into your cells. You absorb your medicine best when your key nutrients are optimised - and if you take your meds on an empty stomach (with only water) with a gap of two hours before / one hour after taking your meds.

Good luck

[SeasideSusie Remembering]

Loula86

I’ve seen on some posts people mention that it is a ‘life threatening’ illness. I didn’t realise that it was ‘life threatening’. Can anyone explain the implications hypothyroidism can have on my future?

Once you are optimally medicated then you should be back to where you were before you became hypothyroid. The Levo is replacing the thyroid hormone your body is no longer producing enough of. So theoretically, once on your optimal dose everything will be fine.

The problem lies with doctors who don't understand how to treat hypothyroidism. They tend to look at just the TSH result (TSH is not a thyroid hormone, it's a signal from the pituitary) and ignore FT4 and FT3 which are the actual thyroid hormones.

The aim of a treated Hypo patient on Levo, generally, is for TSH to be 1 or below with FT4 and FT3 in the upper part of their reference ranges, if that is where you feel well. Many doctors are happy to just see the TSH anywhere within range which can often leave a patient with too high a TSH and unwell.

We need FT4 and FT3 testing (which many surgeries no longer do), and it's the FT3 result that's the most important because T3 is the active hormone which every cell in our bodies need.

We also need optimal nutrient levels - Vit D, B12, Folate and Ferritin - because that's important for thyroid hormone to work properly.

Many of us do private tests with one of ThyroidUK's recommended labs to monitor ourselves when our GP can't or wont do all the necessary tests.

As for it being a life threatening illness, that is very likely referring to if people are left undiagnosed.

[SlowDragon Administrator]

Good your GP recognises that you will need dose increased upwards

The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many need TSH significantly under one) and most important is that FT4 is in top third of range and FT3 at least half way through range

NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.

nhs.uk/medicines/levothyrox...

Also what foods to avoid (eg recommended to avoid calcium rich foods at least four hours from taking Levo)

NICE guidelines

cks.nice.org.uk/hypothyroid...

The initial recommended dose is:

For most people: 50–100 micrograms once daily, preferably taken at least 30 minutes before breakfast, caffeine-containing liquids (such as coffee or tea), or other drugs.

This should be adjusted in increments of 25–50 micrograms every 3–4 weeks according to response. The usual maintenance dose is 100–200 micrograms once daily.

Levothyroxine should always be taken empty stomach and then nothing apart from water for at least an hour after

Many people take Levothyroxine soon after waking, but it may be more effective taken at bedtime

verywellhealth.com/best-tim...

Many people find Levothyroxine brands are not interchangeable.

Once you find a brand that suits you, best to make sure to only get that one at each prescription.

Watch out for brand change when dose is increased or at repeat prescription.

Many patients do NOT get on well with Teva brand of Levothyroxine. Though it is the only one for lactose intolerant patients. Teva is the only brand that makes 75mcg tablet. So if avoiding Teva for 75mcg dose ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half

healthunlocked.com/thyroidu...

Teva poll

healthunlocked.com/thyroidu...

No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap.

Some like calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away

(Time gap doesn't apply to Vitamin D mouth spray)

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies

Ask GP to test vitamin levels

All four vitamins need to be regularly tested and frequently need supplementing to maintain optimal levels

[Loula86]

Thanks that is really helpful. I’ve been taking it straight after waking with water and having a tea about an hour later.

[Ladybex]

I started Levothyroxine 50mcg just over a week ago... I’m still unclear on this disease ...

keep us updated how you get on - I will too

Best wishes Loula

😊

[Loula86 in reply to Ladybex]

Will do. Thanks