I started Levo about 8 weeks ago and had my 2nd blood test this week (Waiting for results). I was started on 100 mcg, I don't have my blood results, I have every page but the thyroid count, typical...
I felt no difference for about 3 weeks, then I had a sudden burst of energy, even did some housework, but this only lasted just over a week. Now I feel worse than I did before!
Depression back with a vengeance and feel totally wrung out. I think I feel worse because I felt better for a little while, I thought there was hope, but now I feel like I've been run over by a train. I am so breathless I can't be bothered to shower as it's too difficult. Sorry to be so pathetic, but this feels really difficult just now.
Is this normal?
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Lozza812
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It is very early days yet. It has probably taken years for us to finally be diagnosed and thyroid hormones have to be increased gradually. 25mcg every six weeks after a blood test until you are symptom-free and feel much better. Thyroid hormones have to be built up slowly. The two most important tests rarely taken are Free T4 and Free T3
You will see from the following that you have clinical symptoms which should be relieved as your dose is increased.:-
Be wary of doctor not increasing your dose until your TSH is 1 or lower (many believe somewhere in range is fine when we feel anything but). They don't check FT4 and FT3 (rarely) but I'll give a link for information. T4 is inactive and has to convert to T3. T3 is the active hormone required in all of our millions of T3 receptor cells.
Important to have vitamin D, folate, ferritin and B12 tested too. These are often too low when hypo and may need supplementing
Do you know if you have Hashimoto's also called autoimmune thyroid disease diagnosed by high thyroid antibodies?
Starting straight on to 100mcg can be quite a strain of the system. Do you have thyroid results from before starting on Levo?
Usually patients are started on 50mcg, and increased in 25mcg steps until TSH is around or just under one and FT4 towards top of range and FT3 at least half way in range
Essential to have both FT4 and FT3 tested, not just TSH
For full Thyroid evaluation you need TSH, FT4, TT4, FT3 plus TPO and TG thyroid antibodies. Plus vitamin D, folate, ferritin and B12.
Essential to test thyroid antibodies plus vitamins
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.
All thyroid tests should ideally 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. (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
NICE guidelines saying how to initiate and increase. Note that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine
Hi Lozza812, yes it’s normal, until it’s stable. You’ve got excellent advice above, but I always had to adjust mine according to how I felt and I’ve experienced the pattern you describe.
Either your body’s ready for another increase in dose and so your symptoms have returned with a vengeance OR , the dose is a bit high for you now. No idea which. Hang on in there, you are on the road to recovery, it’s just a bumpy road!
Personally I think it’s more likely you’re over treated, but only if your symptoms develop like mine, and it could be completely different for you.
Do you have another appointment to go to to discuss this. If not you could try missing a dose. If that makes you feel better, it’s too high. But the risk is you’ll feel much worse...
Under normal events it’s a slow laborious process adjusting and testing, but it doesn’t work for everyone. My approach is unique, I avoid all supplements as I had complications early on with multivits.
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Insomnia Struggles 😩
Struggling with levothyroxine 
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Struggling going it alone!
