Fluctuating TSH levels - can anyone advise please? - Thyroid UK

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Fluctuating TSH levels - can anyone advise please?

Nuneatongirl profile image
16 Replies

I was diagnosed with hypothyroidism in Jan this year after a routine blood test. Here are the results

TSH 68.9 (0.27-4.2)

T4 6.8 (10.5-24.5)

I started taking 50mcg of Levo and retested 6 weeks later on 15/2. The results were

TSH 2.04 (0.27-4.2)

T4 16.8 (10.5-24.5)

The practice nurse was pleased and told me to continue taking 50mcg of Levo.

So here are the results of my latest blood tests and the TSH has shot up.

TSH 34.69 (0.27-4.2)

T4 11.6 (10.5-24.5)

Ferritin 138 ug/L (30-400)

Folate 5ug/L (3.8-9999)

Vitamin B12 251 ng/L (197-771)

I don’t understand why the TSH has gone up. Can anyone help? Thank you

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Nuneatongirl
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16 Replies
Marz profile image
Marz

Probably because you have Hashimotos. Your anti-bodies must be tested TPO & Tg. Your B 12 is too low and VitD also needs testing.

Had your dose been increased in February it is possible your TSH would have stabilised. Push for FT3 testing too. TSH is good around 1 once medicated ...

Nuneatongirl profile image
Nuneatongirl in reply toMarz

Thank you for replying. I asked for antibodies, vit D and the GP agreed but they don’t seem to have been done. Not sure why. Pretty sure they were on the request slips. She refused to test T3. Do you think I should start taking B12?

Marz profile image
Marz in reply toNuneatongirl

I would supplement one pot of Jarrow Methylcobalamin 5000 mcg B12 from Amazon. Then continue with 1000. They are lozenges to be kept under the tongue until dissolved. You will also need a GOOD B Complex to keep all the B's in balance.

thyroiduk.org

Click onto the above link to go to the main website of this forum. Everything Thyroid and you can click onto ABOUT TESTING to read about Private Testing to ensure all the correct tests are done 😊

Nuneatongirl profile image
Nuneatongirl in reply toMarz

Thank you.

SeasideSusie profile image
SeasideSusieRemembering

Nuneatongirl

Why is your GP not seeing you? The practice nurse is ignorant of how to treat hypothyroidism. Go and see your GP and ask for a dose increase. 50mcg is a starter dose and should be titrated up every 6 weeks until your TSH is in the lower part of it's range. The aim of a treated hypo patient generally is for TSH to be 1 or below or wherever it needs to be 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.

Nuneatongirl profile image
Nuneatongirl in reply toSeasideSusie

Thanks for replying. I know, I just get a message via the app! They have upped the dosage now to 100mcg and I have a new prescription.

SeasideSusie profile image
SeasideSusieRemembering in reply toNuneatongirl

Nuneatongirl

Normal protocol is to increase dose by 25mcg increments, you might find going straight to 100mcg a shock to the system. To avoid any unpleasant symptoms it might be better to just increase to 75mcg for a month then go to 100mcg. Retest 6 weeks after starting the 100mcg dose.

If you have 100s and 50s dose of tablets, you could alternate to average 75mcg daily for now.

SeasideSusie profile image
SeasideSusieRemembering in reply toSeasideSusie

PS - just to answer the question you asked Marz, seeing as she's not around at the moment, don't start supplementing for anything vitamin/mineral wise unless tested and you know your levels. If supplementing is necessary, dose will need to be based on the level.

Marz profile image
Marz in reply toSeasideSusie

There is a B12 result above - hence my suggestion 😊

SeasideSusie profile image
SeasideSusieRemembering in reply toMarz

Oh dear, how did I miss that :( Should have gone to SpecSavers. I blame the heat :D My apologies.

Nuneatongirl profile image
Nuneatongirl in reply toSeasideSusie

Thank you for that advice. So can I take 50mcg one day and 100 mcg the next?

SeasideSusie profile image
SeasideSusieRemembering in reply toNuneatongirl

Nuneatongirl

Yes, that's correct.

Nuneatongirl profile image
Nuneatongirl in reply toSeasideSusie

I’ll do that. Thanks so much.

Nuneatongirl profile image
Nuneatongirl

Thanks for replying. I think the dosage was left at 50 mcg because there had been such a dramatic difference between my first and second blood tests. I only got to speak to the practice nurse; GPs seem to prefer contact via the app. Still I feel better informed now and will be more proactive about getting blood tests done. It’s a steep learning curve!

SlowDragon profile image
SlowDragonAdministrator

For full Thyroid evaluation you need TSH, FT4, TT4, FT3 plus TPO and TG thyroid antibodies.

Also very important to test vitamin D as well as folate, ferritin and B12

Ferritin is fine

B12 and folate low, though GP may not agree. They may increase now you have increase in Levothyroxine

Vitamin D can test for £29 via NHS postal kit

vitamindtest.org.uk

Suggest you ask GP for vitamin D test, or test privately

Bloods should be retested 6-8 weeks after you finally get in to 100mcg daily. I agree with the others a jump from 50mcg to 100mcg is too big. This underlines that your GP is not very clued up on Thyroid, though at least they gave you a reasonable increase, just too much in one go!

All thyroid tests should ideally be done as early as possible in morning and fasting. When on Levothyroxine, don't take in the 24 hours prior to test, delay and take immediately after blood test. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).

About 90% of all hypothyroidism in Uk is due to Hashimoto's. Low vitamins are especially common with Hashimoto's. Food intolerances are very common too, especially gluten. So it's very important to get TPO and TG thyroid antibodies tested at least once .

Thousands on here forced to do private testing as NHS often refuses to test FT3 or antibodies

thyroiduk.org.uk/tuk/testin...

Perhaps do this if NHS don't do antibodies or FT3 at next test. No point doing at moment

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.

Always take Levo on empty stomach and then nothing apart from water for at least an hour after.

Many take early morning on waking, but it may be more convenient and possibly more effective taken at bedtime, but it doesn't suit everyone

verywell.com/should-i-take-...

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 each new prescription

Nuneatongirl profile image
Nuneatongirl in reply toSlowDragon

Thanks for replying. Just spoke to GP. She has my Vit D result (apparently it takes longer to process) so I can get it later. I’m going to follow the advice here and then GP has asked me to retest in 6 weeks. Feeling a bit better about it all now.

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