Someone just told me when you start/increase dose, there is a boost and then settles lower (hence why you need to keep going till you get to the correct dose).
I started 25ug 3.5 weeks ago and did feel a little better and have gone downhill again last few days. Is that what it is? I'll keep having this until I get to the correct dose?
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Lenaa
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How will I convince the GP to increase the dose to get my results optimal? I already had to fight to get this trial. she’ll say: you’re within range, you don’t need more
Getting thyroid retested at minimum of 6-8 weeks on current dose....testing as early as possible in morning and fasting and last Levothyroxine dose 24 hours before blood test
Getting TSH, FT3 and FT4 tested (likely to have to do so privately)
I’m feeling truly abysmal and I’m only 4 weeks in. GP wants to retest at 8 weeks. I can’t cope this long. I need to retest and increase ASAP. Shall I try to convince her to do it earlier than 8 weeks?
Well if you take more than you need you might....but generally yes...Levothyroxine..you need enough to be able to use as when you need it ....but some people need to very fine tune dose
Some can take approximately enough...often 100mcg or 125mcg per day
Others might find they need extremely fine tuning....perhaps 125mcg 5 days and 100mcg 2 days per week
It's very much trial and error once get nearer total dose required
GP refused point blank to test FT4 and FT3. She said she’s not allowed (bull....). We had a heated argument and she decided to withdraw levothyroxine from me altogether. She said it was only ever meant to be a trial and in spite of me saying I feel less horrific (still horrific but lesser level of unbearable) she did not care that I will actually feel worse when she stops the meds.
She says it was only ever meant to be a trial and in spite of me feeling less awful, she doesn’t care. She says she’ll tell the endocrinologist that I feel less bad. How will that help me now?! I can’t wair months for a referral without meds and they’ll prob also refuse because I’m within “normal” range. They don’t care it’s very far from optimal
But it happened to me and many. We feel an improvement upon the first doses we're started on, then we can drop again because we are going to need a raise in dosage until we get to feeling well. Blood test are important but so are clinical symptoms. See someone else. Don't waste your mind worrying on her. Good luck love X🙂
So do you get to a point where, on the right dose, this no longer happens? I am experiencing the same thing where I raise, feel better for 6 weeks, then feel fatigued again and have to raise further. I am wondering if I can ever stop raising?
Of course it's going to stop, you're not going to go on and on. You have to go by your blood tests and elimination of symptoms. You have to be patient and also work on optimisation of all your vitamins and minerals that are essential for Thyroid function and good conversion of thyroid hormones for them to be utilised. This is not like taking an aspirin. It's work. It takes time effort and understanding. Read and educate yourself and find a doctor that will listen. Don't waste time worrying just be calm and proactive as possible. Take care
Did you get TSH tested? If not she should definitely have done so
Suggest you get full Thyroid and vitamin testing while still on current dose
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if Thyroid antibodies are raised
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw).
Come back with new post once you get results and ranges
Look at seeing different GP once you get results depending on what results show
The only way to know whether you really need thyroid medication is to test your FT4 and FT3. If your GP won't do it, then get yourself a private test. If that shows you need thyroid hormone, then you at least have something to thrust under your GPs nose.
Yeah but it will probably show within range as usual. I have very low T4 and T3 but it’s still within nhs guidelines so they will refuse. They’re not interested in what is optimal for a person esp a person with M.E.
YES I would. Thing is, I’m removing my breast implants next month due to their toxicity and there is the potential my thyroid may recover. I could wait until then but I’m so scared of feeling worse
It would be amazing if removing the implants solves your thyroid problem. Did you have the ME symptoms / diagnosis before or after getting the implants?
I’ve had implants for 9 years and M.E. for two. Can take many years for symptoms to appear and amongst the many, thyroid problems are extremely common. So it’s possible explant will return my thyroid to normal. Implant toxins are endocrine disruptors
What would happen if I just stopped Levo? Because I’m in a pickle. There’s a chance removing my breast implants (next month) will allow my thyroid to recover because the toxins are endocrine disrupters and thyroid problems are extremely common in breast implant illness. So I could stop Levo, explant and see how I feel and retest. But I’m scared I’ll feel worse until or even after explant. I cannot afford to feel worse. But if I don’t try stopping, I won’t know if explant is improving my thyroid. Also, if I’m going to self medicate, I might as well go for ndt because it’s a better medication. But then I’d have to go through adaptation all over again. Don’t know what to do.
Im sorry if I missed any replies, the thread is muddled up 😬
Yes indeed, implants cause a huge amount of illness including thyroid problems.
I haven’t tested anything yet as the argument with GP over not giving me T4 and T3 and antibodies test only happened yesterday. She’s only given me TSH which I was furious about. She essentially said this was only ever meant to be a trial and she can’t give me Levo when all my TSH results have always been normal. Complete ignorance over my T4 and t3.
I was going to do that TSH this morning just because I might as well. I haven’t taken Levo last night but I had breakfast. I eat early because I get severe fatigue after eating so it gives me recovery time before I have to leave the house. I might have to leave the test and try on a day I can leave eating till later.
Someone just offered me a month’s worth of Levo so that will keep me going at least until after the op at which time I can reassess the situation. I’ll do my TSH tomorrow first thing since I have the request anyway. I’ve booked with another GP for next week to argue my case all over again
If you felt better before than you do now, don't take it. It seems you may not have a deficiency. It is not a good thing to take. It affects your life in all sorts of ways Ask your doctor to test for vitamin deficiency.
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