Starting dose for Levothyroxine?: I've had my... - Thyroid UK

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Starting dose for Levothyroxine?

luthien profile image
9 Replies

I've had my bloods back from my GP which show TSH at 13.8. I have seen my private Endometriosis Specialist recently (laparoscopy for excision of endometriosis) and he has raised the concern for Hashimoto's especially with infertility issues - problems conceiving naturally. He has written to my GP requesting a full Thyroid profile; listed all the stuff needed, as in everything - pretty much the same as Thrivas £79 one. Basically they GP has come back with:

"We do not have access to all those specific tests in general practice as they aren't always needed, I have however booked repeat bloods including vitamin and thyroid function including anti-thyroid peroxidase"

What does these mean? So annoyed!

Will this be the standard TSH, Free T4, vitamin B12, Folate, and one of the antibody ones?

I have ordered this one thriva.co/tests/thyroid-test as I'm not sure the GP one will be thorough enough.

The GP has re-prescribed Levothyroxine as the old prescription expired. This is for 50mcg, only 56 tablets, with a check up in two months, thats 60 days, so not sure how that works. Anyways the NICE guidelines say 1.6mcg per kg, being about 90 kg (and reducing) should I not be on about 150mcg? Could I safely double up and take 100mcg? Or would that be a bad idea? What happens when / if I run out of tablets? Asking because I see some of you monitor your own tablets alongside repeating online tests - happy to do those too.

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luthien
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9 Replies
crimple profile image
crimple

So with a TSH of 13.8 your GP hasn't raised your Levothyroxine to 75mcgm per day? I would call the surgery and ask for a new prescription for 75 mcgm. Can you change doctors? this one clearly doesn't understand how to treat hypothyroid patients. Once you are on levothyroxine the aim is to get you TSH down to 2 or lower. You should have 25mcgm increases and followed by a blood test after 6 weeks to check how things are going.

luthien profile image
luthien in reply to crimple

I now have an appointment booked to take bloods for TSH, free T4 (I think it's that) and the thyroid antibodies (they didn't say which one), that's on the 19th Feb. GP has said not to take my levothyroxine until after the GP appointment to discuss results (haven't started it yet as the prescription at the pharmacy was mixed up) - no idea when that will be - it should be a week after the blood test so about end of Feb. That seems a long way away to leave me with a high TSH. It's been high since my last bloods on the 1st December 2020. My GP has said the labs aren't keen on signing for thyroid tests less than 3 months apart, so she's not sure she'll get this one through. Hmmm what do I do, this is the NHS. don't want to go private just yet, but happy to do so.

jsy_girl profile image
jsy_girl in reply to luthien

Excuse me whilst I get angry. What is she going on about?!!!! Why doesn’t she want you to take the levo. It will still give a reading on the antibodies if you are on levo. Is there another GP at the practice you could speak to? It took me 3 doctors at my practice to find one that vaguely knew what she was on about and was sympathetic to testing t3. Suspect because she had had thyroid surgery herself.

jsy_girl profile image
jsy_girl

Agree with crimple with a TSH that high you should be on 25mcg increments with another test in 6-8 weeks. And yes the idea is you might get up to 150mcg maybe more but ideally you would be aiming for your symptoms to subside. My GP will test ft3, it would be worth asking for that too. Ask for ferritin and vitamin D too (they might be including in that set but it’s unclear)

I would speak with the doctor and ask for 25mcg increase rather than going it alone currently as your dose and blood tests will get out of sync with your GPs records

luthien profile image
luthien in reply to jsy_girl

I've replied above, but in addition my GP has said they don't test for T3 / Vitamin D or Ferratin under the NHS; they may look at those if the other results are out of range.

I don't actually have any symptoms; what would they be? No one's explained what I should look out for.

jsy_girl profile image
jsy_girl in reply to luthien

How strange. What does he mean the NHS don’t test them.... they absolutely do test them.

Although not altogether unsurprising that they don’t understand thyroid function is aided by them especially when they won’t test ft3 either.

For symptoms go here:

thyroiduk.org/if-you-are-un...

You can download a tick sheet and each time you get a blood test record a score against each symptom. It’s a useful way of monitoring progress for yourself.

luthien profile image
luthien in reply to jsy_girl

They dont' test them as in it's not on their standard list of tests for undiagnosed thyroid conditions. They have said that because my request came from my private endometriosis specialist whom has access to all the tests he can request them but under the normal NHS route they cannot as it's not on their list.

helvella profile image
helvellaAdministratorThyroid UK

"We do not have access to all those specific tests in general practice as they aren't always needed, I have however booked repeat bloods including vitamin and thyroid function including anti-thyroid peroxidase"

Has the GP contacted the lab and discussed WHY these tests are required? And pointed out they are fully supported by a specialist? And found out whether they will, or will not do them?

It is possible the lab would be fine. If not, they might bend if the specialist contacted them as well.

It appears the GP is simply making assumptions about what the lab will do. Even if based on previous experiences of the same lab, it seems wrong not to find out and have suspicions confirmed - or refuted.

luthien profile image
luthien in reply to helvella

The GP is the one whom said they don't do those tests / request them / have access to them. I'm guessing because it costs? The GP has said they could request them if a few of my results show up abnormal.

I have pushed for my GP to request them and they will not; it's not what the standard NHS testing route is for undiagnosed thyroid conditions. I guess the GP has a list of what they can / cannot request at certain points.

The lab caters for both NHS and private blood tests - I have done some of my private ones there before (for my endometriosis) - saves on paying when it's the same lab. So potentially if my thyroid issues are not being diagnosed correctly under the NHS I could get a referral privately as my insurance covers any tests for diagnosis of a condition. It just seems a weird way to go about it from my point of view when the GP could just try harder rather than going by a ticklist.

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