Hypo following RAI

[Hypo88]

I am a 28 year old male who had an overactive thyroid as a teenager. It was under control on carbimazole but eventually I decided to go ahead with my endos advice to get Radio active iodine treatment in 2010. I was made aware that this could potentially cause an underactive thyroid down the line but thought I'd take the chance.

It has been about 7 years since I had Rai and only this year I found symptoms of an underactive thyroid. I started losing more hair than Normal in the shower and felt abit depressed. I had blood test which show a TSH of 7.

My current situation is that the doctor has said I can start a small dose of throxine 25mcg, or wait and monitor bloods in a few months again.

If anyone feels they can advise me it would be appreciated

[SeasideSusie Remembering]

Not medical advice, just my personal opinion, why wait? Your TSH is well over range, it's not likely to get better.

Was it just TSH tested? It would be better to have FT4 and FT3 as well.

If you go ahead with the Levo, make sure you are retested in 6 weeks' time, and get the free Ts done if you can.

The aim of a treated hypo patient generally is for TSH to be 1 or below or wherever it is needed for FT4 and FT3 to be in the upper part of their respective reference ranges when on Levo, if that is where you feel well.

Always have your thyroid tests done at the earliest possible appointment of the morning, fast overnight (water allowed) and leave off Levo for 24 hours. This gives the highest possible TSH which is needed when looking for an increase in dose or to avoid a reduction. That's a patient to patient tip which most doctors would say is not needed, patients say otherwise.

[Hypo88 in reply to SeasideSusie]

They said the T3 was fine. I don't think the test was that extensive regarding FREE and reverse Ts. Some online reading put me off taking levo But I do feel and understand that I need it now. Wish I read more about it before RAI in hindsight. Thanks for your help

[SeasideSusie Remembering in reply to Hypo88]

Never believe any doctor who tells you that your results are 'fine', 'normal', 'OK' or any other description. That is their opinion and all it means is that it is somewhere within range, sometimes it even means 'it's below range but we're not going to worry about that'.

Always ask for a print out of your results, together with the reference ranges, so that you can see for yourself where your levels lie.

When on Levo, most people feel best when TSH is 1 or below with FT4 and FT3 in the upper part of their respective reference ranges, if that is where they feel best.

[Hypo88 in reply to SeasideSusie]

Will ask for printouts they did seem a bit lax in there approach different to the days where I was on medicine for being hyperactive

Are any brands of levo preferred in particular or are they all same? Do you think 25mcg will need to be increased? I'm hearing most people take about 100mcg for their hypothyroidism. Finally would you say your thyroid completely shuts down once you start the synthetics daily?

[SeasideSusie Remembering in reply to Hypo88]

I think there are 4 UK brands of Levo. What suits one doesn't always suit another, some people can get on well with any. It's all down to the individual, if you react to fillers, etc. Find a brand that suits and stick to it, don't let the pharmacy chop and change as they can sometimes do.

I think you will eventually need more than 25mcg Levo.

I didn't have RAI, I became hypo not long after having my second child about 44 years ago but it went undiagnosed for 2 years because I was a mum and I could expect to be tired!

So 40 odd years of Levo and I'm not about to try and see if my thyroid has completely shut down. I have added T3 and when I was tweaking doses I happened to reduce my Levo by another 25mcg when I really shouldn't have and my FT4 plummetted and I could barely function. It never changed my TSH though, it was still suppressed.

[shaws Administrator]

I am sorry that you now have the need for levothyroxine. Your GP has given you a tiny starting dose as your TSH is 7 and in the UK they've been instructed not to prescribe until TSH is 10. In other countries they diagnose when TSH is 3+.

In the first place you have been rendered hypothyroid due to having your thyroid gland removed and he should increase your dose by 25mcg every six weeks until your TSH is 1 or lower. Not 'somewhere' in range as most doctors believe.

Your blood tests have to be at the very earliest, fasting (you can drink water) and allow a gap of 24 hours between your last dose and the test and take afterwards.

Always get a print-out of your results with the ranges. Ranges are important as labs differ and it helps members to comment.

Ask for B12, Vit D, iron, ferritin and folate to be tested too. We are usually deficient and if we are deficient they also cause clinical symptoms.

You can tell him you've taken advice from the NHS Choices for info and help with dysfunctions of the thyroid gland Thyroiduk.org.uk.

thyroiduk.org.uk/tuk/about_...