long term thyroid medication worries

[ragdollcat]

Hi, I am 47 and I’ve just been diagnosed with an under - active thyroid and Hashimotos disease a week ago. I’ve been prescribed Levothyroxine to take. Anyone out there who has been on it long term ? Any older people who started taking medication in middle age and are now 70 /80 / 90 years old? How does it affect your life now ? Thanks 🙏

[SlowDragon Administrator]

Levothyroxine is not a medication, but a replacement thyroid hormone

We have many members been on levothyroxine many years, 50, 60, 70 years

How much levothyroxine have you been started on

Bloods should be retested 6-8 weeks after any dose change or brand change in levothyroxine

Important to regularly retest vitamin D, folate, ferritin and B12

Vitamin levels frequently low when hypothyroid.

Have you had coeliac blood test done

[ragdollcat in reply to SlowDragon]

Hi, Thank you so much for taking the time to reply. The dose is 75 micrograms of Levothyroxine, and I haven't had a coeliac blood test done yet (I don't think). I will ask about the blood test when I see my doctor. I will also ask about vitamin levels ! thanks for the tip.

[fuchsia-pink]

Please don't worry - yes, it's a "life-long" condition, but there's no reason for it to impact our life At ALL once you are on the correct level of medication. I've only had it about 18 years myself, but there are plenty of a-hem older ladies here ....

The important thing is to understand your condition, the meds you need to take and the blood tests you need to have regularly, as what you need to take can vary over the years.

I don't know how it works in Australia, but over here in the UK, we tend to be started on a modest dose of T4 meds (levo) - usually 50 mcg a day, and then you need further blood tests every 6 - 8 weeks after that, until TSH is always less than 2, free T4 is nice and high in range (a good 2/3 through) and free T3 is high too. Over here it can be a bit of a fight to get free T3 tested, even though it's arguably the most important blood result ...

At the risk of telling you what you already know, TSH is a message from the pituitary, basically telling the thyroid to work harder if it doesn't produce enough hormone, so broadly the higher your TSH, the worse your thyroid is managing. Docs here are TSH obsessed, but the reality is that it's a useful diagnosis tool and no more, as it doesn't tell you if the message is received by the thyroid or indeed acted on. For that you need to measure your actual thyroid hormones. Your thyroid produces T4, so free T4 tells you how much of this is available for your body to use, but T4 is inactive: it needs to convert into T3, the active hormone needed in every cell of your body, so you need to measure free T3 too to see what's what.

You should also test key nutrients - ferritin, folate, vit D and B12 - as you need these to be good to feel fully well and for our levo to work properly, but many of us hypos are deficient and need to supplement.

You should always have an early morning fasting blood test, when TSH is highest, with a 24 hour gap from your last dose of levo (take the next straight afterwards) and get your actual blood results afterwards, along with the relevant lab range (these var from lab to lab). Don't rely on someone saying you're "in range" or "normal" - you want actual figures.

And you don't need to test antibodies again, now you know you have Hashi's. They will go up and down as they want: a decrease doesn't mean you are "getting better"; it just means they're low at that point and will go up again later x

[ragdollcat in reply to fuchsia-pink]

Thank you so much for your reply and all the great information that you have provided for me. It really is like learning a whole new language and any information is greatly appreciated. I had open heart surgery in 2020 for a congenital heart defect that was discovered, and so I presented at emergency last week as I was fearful my sudden fatigue and anxiety was cardiac related. Found out that my heart is all good...YAY, but now it's my thyroid ! ...bah! I am trying to see it as a gift as it's better to know and treat it rather than be oblivious. The doctor told me I am borderline, T4 ( not too far off normal) and my TSH is high. I will ask the doctor about T3 ? I am pretty sure that I wasn't tested for T3. Many thanks again

[fuchsia-pink in reply to ragdollcat]

This forum has just been FAB for so man of us - I wish I'd found it sooner!

But PLEASE don't have a doctor refer to "normal" ... that just means within a fairly arbitrary lab range. You want "optimal"

For example, in the UK a typical lab range for free T4 is 12 - 22. But you'll feel dreadful if your free T4 is say 12.5 and much much better if it's say 19.5 - as you need free T4 nice and high, and for most of us that means a good 2/3 or higher through the lab range. But both results are "in range" and therefore acceptable to a bored, lazy or ill-informed GP (who doesn't have to live with them). Over here we often have to put on our big-girl pants and fight for proper treatment - hope it's better in Oz! x

[ragdollcat in reply to fuchsia-pink]

Hi, I guess it’s just a matter of trial and error getting the right dosage. I have only seen the emergency doctor so far and I’m looking forward to seeing a GP . I don’t have a regular doctor yet but I’ve been recommended a highly regarded one (all booked and waiting to meet her). Hopefully she’ll be clued up ! I do find the younger doctors are really excellent and don’t miss a beat . The medical text books are nothing compared to lived experience though. Thank goodness 😅 for this forum, and the kind people who are willing to share knowledge and give support X

[Anthea55]

Many of us are getting on a bit - I'm 82 and was diagnosed over 10 years ago. Without thyroid replacement hormones I would be extremely unwell.

A good place to learn about thyroid problems is the ThyroidUK website at thyroiduk.org

Come back here whenever you like for help and info. We often know a lot more than the doctors!

Best wishes.

[ragdollcat in reply to Anthea55]

Hi, Thank you for responding to my message any information is greatly appreciated. It is wonderful that we have the option of hormone replacement. I have been a bit spoiled in that I have never had any major health issues until 2020 (open heart surgery for a hole in the heart) and now my thyroid. It's been an adjustment having to slow down and actually look after my health. I will visit ThyroidUK website. Thank you

[SeasideSusie Remembering]

ragdollcat

I've been on Levo for 47 years, now in my 70s. No problems.

[ragdollcat in reply to SeasideSusie]

Hi, Thanks for taking the time to let me know this. It is great to hear

[Miffie]

I am only 70 but been on thyroid replacement for sixty years. To date it doesn’t seem to be an issue. I plan to continue for an other couple of decades.

[ragdollcat]

Hi, Thank you for responding to my question. It's is such a relief to hear that thyroid replacement isn't as bad as I imagined. 😀

[Wetsuiter]

Thyroid replacement isn't bad at all. It s getting the correct dose for you that can be...frustrating, leaving you feeling poorly in the meantime. my profile gives you an idea.

[ragdollcat]

Thank you for sharing your profile 😊 .