Hi everyone please can you help me with some ongoing treatment. After seeing private GP and being very poorly for 6 years giving up work. Diagnosed with CFS. M.E by NHS. Private GP is treating with Levothyoxine after listening to my symptoms and doing bloods. Dismissed Chronic Fatique and looked at my past 6 years TSH levels and listened to my symptoms. I started levo 3 months ago with quarter of 25mg table for 2 weeks then half for 2 weeks then one full tablet and the one and half , now on 50mg . I stated I wanted to start very gradually as I have been hypersensitive to medication as felt so unwell, but thankfully I have been fine no side effects and by the results this month my levels are good. other tests vitamin D good , iron B12 just full range of tests done..... ferritin still. high at 380ugl Lab (13-150) This has been high for a while now on last tests. Saw rheumatoid specialist October but all ok on tests he did not test any thyroid work, his test for ferritin was 280 he wrote stated normal range. GP said yesterday this could be to autoimmune with the thyroid and my cholesterol is high too and I eat very well but the stress of being poorly and hopeful having an answer with the levo has been hard after so many years of seeing specialists I have been gluten free and diary free for the last 3 months after private GP advise and feel better not bloated going to the loo better and lost half stone without trying, definitely helping.
TSH Now 0.36 Miu/L September was 1.53 ( lab range 0.27-4.2)
Free thyroxine now 17.9 ......September was 13.8 ( lab range 12 -22)
Doctor stated yesterday I will continue on 50mg a day , seeing him in 3 weeks time. I have felt slightly better but still have symptoms. Can anyone comment on the fact that obviously the levo has worked quick for me to get levels up and people saying they feel great but Im not there yet so how do I go on with the levo. GP stated he is continuing to work treat me due to all the symptoms. Do I need this as a dose to keep levels good or will I overdose. Once its a acceptable range looking like mine surely I need to continue.
Thank you everyone in advance
Written by
Thor63
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Often we need FT4 higher in range, especially if FT3 is low
Have you had BOTH TPO and TG thyroid antibodies tested?
Bloods should be retested 6-8 weeks after each dose increase in Levothyroxine
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.
Also EXTREMELY important to regularly retest vitamin D, folate, ferritin and B12
You may need to get full Thyroid testing privately as NHS refuses to test TG antibodies if TPO antibodies are negative
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies
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 special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
Cheapest option for just TSH, FT4 and FT3 £29 (via NHS private service )
The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many need TSH significantly under one) and most important is that FT4 in top third of range and FT3 at least half way in range
NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.
Thank you very much for your advice, yes will do what you recommend, not had antibodies or Ft3 done, TPO, TG either, doctor very supportive, but he's private, best money I've spent, now if my t4 and tsh showing better than 3 months ago, it's important for other tests you recommend to be done. Merry Christmas 🎄🙏
You do need to continue. Hypothyroidism doesn't go away.
What you are taking is thyroid hormone replacement, replacing the hormone your thyroid can no-longer make enough of. It doesn't cure the thyroid and make it work again, you have to continue with the hormone replacement for the rest of your life.
On 50 mcg levo, you're unlikely to over-dose, it's only a starter dose, but it would help us to understand if you gave us the range for your FT4 result.
You also need more testing: FT3, TPO antibodies and Tg antibodies.
Thanks greygoose will do other tests, Ft4, range (12_22) my result now is 17.4 in September from 13.9. I just don't want it all to be normal and Im not going to feel stronger as I've had every symptom going and I'm so optimistic about feeling some quality of life back and feel slightly better but I pay the price if I start overdoing it Merry Christmas to you 🎄🤶🙏
Thanks seeing gp for next appointment 3 weeks will discuss this, it is gradually being increased so I adapt to it. So my understanding from all comments posted I need to T4 needs to be higher range, mid way presently. Ta 👍
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