Thyroid UK
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No better

Hi I’ve been on levothyroxine for about 5 months now I was started on 50g then put to 100g then another 25g every time I’m upped in dosage I start to feel better for a few weeks and then bam I’m back to feeling rubbish, I’m so tired I sleep a good 12 hours get up and my eyes are closing I could go back for another 12 hours, I wake with pins and needles in my hands and wrists, one of my arms is so dry and scabby and my elbows dry and cracked, I’m going back to the doctors today do I ask to be sent to a specialist I don’t mind paying if it’s going to sort me. Really fed up now

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How long since dose was increased to 125mcg?

You should be retested 6-8 weeks after each dose change

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

Do you have high thyroid antibodies? This test confirms if it's due to autoimmune thyroid disease also called Hashimoto's (90% of hypothyroidism in Uk is due to Hashimoto's so it's likely) You need to know. Did GP or Endo ever test these? If not ask that they are tested.

Essential to test vitamin D, folate, ferritin and B12. Always get actual results and ranges. Post results when you have them, members can advise

For full evaluation you ideally need TSH, FT4, FT3, TT4, TPO and TG antibodies, plus vitamin D, folate, ferritin and B12 tested

See if you can get full thyroid and vitamin testing from GP. Unlikely to get FT3

Private tests are available

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

Vitamindtest.org.uk - £28 postal kit

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.

Link about antibodies

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

Link about thyroid blood tests

thyroiduk.org/tuk/testing/t...

Print this list of symptoms off, tick all that apply and take to GP

thyroiduk.org/tuk/about_the...

See Box 1. Towards end of article

Some possible causes of persistent symptoms in euthyroid patients on L-T4

You will see low vitamin D, folate, ferritin and B12 listed

onlinelibrary.wiley.com/doi...

Reply

Ask your GP if you can have a Full Thyroid Function Test as you are not feeling the least bit improvement on levothyroxine and you want to know whether or not levo (T4) is converting to T3 (the only active thyroid hormone). T4 converts to T3.

TSH, T4, T3, Free T4, Free T3 and thyroid antibodies. At the same time ask for B12, Vit D, iron, ferritin and folate if you've not had these tested.

Levothyroxine should be taken first thing with one full glass of water and wait about an hour before eating. Food interferes with the uptake.

Blood tests have always to be at the earliest for thyroid hormones and a gap of 24 hours should elapse between your last dose and the test and take it afterwards.

Read about FT4 and FT3 in the following link. If GP or lab wont do them you can get a private blood test from recommended labs who do home pin-prick tests.

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

Reply

But this is perfectly normal. This is the way it works. With any hormone you have to start low and build up slowly. With T4 (levo) that means starting at 50 mcg (or 25 mcg if you're very old, very young or have a heart condition) and increase every six weeks by 25 mcg, until you get to the point where you feel well and stay well. The fact that your symptoms start creeping back just means that you're not on the right dose yet, and need another increase. It doesn't mean that you're some freak of nature and will never feel well! lol 125 mcg isn't a high dose. You need to keep going for a while yet, before you find your 'sweet spot'. :) You cannot hurry these things or you will make yourself worse. There are no short-cuts, and so far, your GP seems to be doing the right thing.

My advice would be that, as long as your doctor is happy to keep increasing your dose, do not go to see a 'specialist' - an endocrinologist! Why? Because the large majority of endos are diabetes specialists who know nothing about thyroid, but think it's a doddle to treat! And they end up messing people about and making them worse! Do not believe that just because they are supposed to know about all the hormones, that they actually do! Because they don't. Just carry on slowly increasing your levo until your symptoms are all gone, because you're doing just fine as you are. You just need to have patience. :)

One important tip, always get a print-out of your results after a blood test and keep your own records. Then, if you hit a problem, you can post them on here for more detailed advice.

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Thank you so much for your reply it’s very helpful more helpful than the doctor even tho he’s quite good, he has now upped my meds to 150 but not sending me for blood tests, it’s really getting me down now anyway going to take your advise xx

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From what I've read here I'd use your money for private tests rather than private endo. You may not be converting the T4 in Levo to the T3 your body needs.

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Hi I asked my doctors receptionist what my last blood test was she wrote down tsh level 13.46 and t4 level 9 means nothing to me lol

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