just been diagnosed and don't know what to do next - Thyroid UK

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just been diagnosed and don't know what to do next

soundeditor profile image
5 Replies

Not sure what to do next! I have been taking for a month 50micro Levothyroxine and have not feeling any better. When should I go for another blood test? Now or in 2 months time. Still with my GP. Do I food fast for 24 hours before the test and same for the Lev meds.

Tiredness

Depression

hair loss

Weight gain

memory loss

pains and more

Take 20mg Rivaroxaban for blood clot in shoulder and 5 mg Amlodine high blood pressure every day.

I have attached my Renal bloods and are they really scary?

Any advice would help!!

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5 Replies
SeasideSusie profile image
SeasideSusieRemembering

Once we are diagnosed and started on Levo, we should have a repeat test after 6-8 weeks and an increase of 25mcg. Retesting/increasing by 25mcg should continue every 6-8 weeks until your test results are where they need to be for you to feel well. A treated hypo patient generally feels best with a TSH of 1 or below with FT4 and FT3 in the upper part of their respective reference ranges, although it is, of course, very individual.

When having thyroid tests always book the earliest 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. This is a patient to patient tip which we don't discuss with doctors or phlebotomists.

Take your Levo on an empty stomach, one hour before food or two hours after, with a glass of water only, no tea, coffee, etc for an hour. Keep Levo away from any other medication by 2 hours, some need 4 hours, some more - Google for interactions between Levo and your other meds.

Why do you think your renal bloods are scary? They're in range.

Hypothyroidism can cause high cholesterol and those levels might come down when you are optimally medicated.

SlowDragon profile image
SlowDragonAdministrator

Cholesterol will naturally drop as your thyroid comes under control

Nice guidelines saying how to increase

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

Note that most patients need between 100mcg and 200mcg

Do not let GP stop increasing dose once TSH gets back in range

TSH needs to be at the lower end of range (typically between 0.2 and 1 ) and FT4 towards top of range and FT3 at least half way in range

Statins are not needed

nhs.uk/conditions/statins/c...

Make sure GP tests vitamin D, folate, ferritin and B12

Do you know if you have high thyroid antibodies? If not been tested ask GP to do so

High antibodies means the cause is autoimmune thyroid disease also called Hashimoto's

About 90% of all hypothyroidism in Uk is due to Hashimoto's

All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results

Gambit62 profile image
Gambit62

as others say - it does take time.

I'm not patient and it shocked me that I reacted very badly to the dose that I was started on- ie I felt 100x workse on that than I did before starting.

Ihave also been shocked by the way my GP runs the test but doesn't bother to ask me how I actually feel - result is that I have become the patient from hell and taken to unilaterally upping my levo, seeing if I feel better and then telling them. It isn't a strategy I'd really recommend as idea:)

I would say I was extremely depressed for at least the first month of treatment - and have spoken to others who have said that they experienced really bad depression at the start which did take quite a while to clear.

I was initially put on 25mcg - I was unable to move and as I have absorption problems and was getting seriously suicidal as a result but couldn't get through to GP I upped to 50mcg, which was still low mood and very little energy but at least I could move. was on 50mcg for about 6 weeks and had TSH done - which had come down - but no T3 and T4 - ranted and raved and sat on the dose for another couple o weeks until deciding that the lack of energy was ridiculous - the results had been well above 1 so upped about 2 weeks ago to 75mcg and starting to feel as if that is probably about the right level for me ... and haven't yet told the GP - partly to do with having the time,but also to do with wanting to monitor how I feel a little longer.

helvella profile image
helvellaAdministratorThyroid UK in reply to Gambit62

We have seen some very important questioning of low doses for starting. At least one senior endocrinologist now says he avoids 25 micrograms as it often is worse than none.

It reminds me of car driving! Many years ago, Porsche were researching fuel efficiency. In broad terms, their results suggested accelerating to about 30 reasonably briskly, then gently accelerating to required speed. I suspect that for levothyroxine the best approach would be similar, get going briskly at 50, or even 75, then gentle increases based on results - tests and how the patient feels.

The six weeks delay before re-testing is simply based on how long it takes for all the biochemical blood tests to stabilise after a dose change. It really doesn't mean that a further increase must not be prescribed - though that is often how it is interpreted.

Gambit62 profile image
Gambit62 in reply to helvella

totally agree - with the proviso that there are some circumstances - eg pre-existing heart conditions or generally weak systems in the elderly - that might warrant a more cautious approach - what works or a porsche won't necessarily work or a fiat panda :)

the key thing is that GPS should be asking their patients how they feel - not just looking at test results.

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