24 male, diagnosed with autoimmune hypo at 16. Was on 200mcg levothyroxine (Synthroid) for years and felt amazing, 0 symptoms. Went off meds for 16 days, felt like crap, tsh 224 and FT4 6 (9-19), so I went back on 200mcg. After 8 weeks, extreme overmedicated symptoms (insomnia, fast heart rate, extreme brain fog and fatigue), tsh 0.04 and FT4 18 (9-19). Doc lowered all the way to 125mcg and I have slowly been increasing ever since, every 6-8 weeks.
Currently back on 200mcg after 8 months, and still feel very hypo. I have been on it for 4 WEEKS only. No overmedicated symptoms at all. Extreme brain fog and fatigue.
When you were on the right dosage, when did the symptoms start to fade? and do they just go all of the sudden or is it gradual? This was my dosage for years and I felt amazing, levo works very well for me.
Latest blood test after 175mcg:
tsh 0.37
FT4: 14 (9-19)
no ft3
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Johnfishman22
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My doctor never tests folate, B12, and especially ferritin. Only tests vitamin D which is now 120 (75-250). Is there private tests or should I push for it?
As GP won’t test Ft3 look at getting FULL Thyroid and vitamin testing done 8-12 weeks after dose increase
For full Thyroid evaluation you need TSH, FT4 and FT3 tested
Also both TPO and TG thyroid antibodies tested at least once
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high thyroid antibodies
Autoimmune thyroid disease with goitre is Hashimoto’s
Autoimmune thyroid disease without goitre is Ord’s thyroiditis.
Both are autoimmune and generally called Hashimoto’s.
Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease or especially after any dramatic drop in dose levothyroxine
20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis
In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
Testing options and includes money off codes for private testing
Johnfishman22 I know others will reply with great advice and searching past posts on the board will reinforce the trued and true approach to finding your sweet spot again.
I have been on it for 4 WEEKS only. No overmedicated symptoms at all. Extreme brain fog and fatigue. When you were on the right dosage, when did the symptoms start to fade?
But I’ll reply to this part from my experience.
First- any med change you give it at least 6-8 weeks. During those weeks symptoms often get worse or new scary ones pop up. Keep sharing with the board for opinions through those times … but many times the advice is - wait it out. Keep sharing- each of us is different and Give it the 6-8 weeks.
I explain this to my family/friends as it’s like trying to steer an ocean liner into a turn. You have to make a very small motion then wait, if you turn the wheel too much at once it won’t react immediately but somewhere later you’ll overshoot.
Second, it’s a chain reaction we need to wait for. I tell them, if only it was like diabetes and insulin … you have too much cake at dinner and you take a little extra insulin and all good. But no… with thyroid, it’s a chain reaction like a magic cauldron potion converting and catalyzing your entire hormonal system + vitamins/minerals to change over hours, days, weeks and months .
The second part of the answer is that you need to plan for multiple periods of 6-8 week adjustments. Titrating slowly and letting your body adjust. Sometimes it’s up to a year or sometimes, yes, years.
But for myself as I’ve said before, this board demystifies what’s needed and what’s happening in my body during the debilitating fatigue and brain fog times so that even when I feel like garbage, I know I am in a slow and steady track to health and that I am not wasting any time anymore of wrong treatments.
It feels like you’ll never be well again, but you will get better slowly.
question Why did you go off for 16 days?
Also, better, more articulate practical advice will come from others, but you will need:
1) TSH, Free T4 and Free T3 tested all together 6-8 weeks after each med change, following consistent protocol others explain on this board. But important- you need a measure of T3 and most doctors don’t know that, so you have to ask for it.
Also curious what you weigh, as T4 is dosed on weight and starter dose is 50 mcgs working up to 1.6 mcgs per kg of body weight I think as a general guideline. 200 mcg is higher than most people.
2) And you also need to start testing these vitamins, which are needed to be optimal (not just in range) for thyroid function: D3, B12, Folate, Ferritin
That is a great analogy. That explains why going off and then all the sudden back onto 200mcg (the dosage I was on for years), made me feel very overmedicated. Slowly titrating I have found is the way to go, since by day 18 going right back onto 200mcg last time I could not sleep and heart rate was very fast, now I have none of that since going up slowly every 6-8 weeks from 125mcg. Back on 200mcg now.
Thank you. I was curious by 4 weeks if I should be noticing any improvement, but others have said that it takes a least 6 weeks to notice anything for most. As long as I am on the right path, I'm good and can wait. I just don't want to be doing something wrong and prolong this whole thing... it has been the worst year of my life. The fatigue and brain fog are no joke. But I will be patient and wait a full 8 weeks on 200mcg.
My latest blood test on 175mcg (last one) was tsh 0.37, FT4 14 (9-19). When I was"normal" on 200mcg prior to going off it, my blood was tsh 1.46, FT4 18 (9-19), so my FT4 was a lot higher than it is.
I went off because I have an identical twin brother who randomly did and felt absolutley fine, he was always on a lower dosage. I was ignornant since I did not ever notice symptoms and did not know this could ever happen. My doctor also didn't warn me since he supervised it. My brother just got his blood tested and tsh 10.4 and FT4 11 (9-19) so he is probably going back on too. Will never do that again.
I am 24 male, 5'10 (177cm), and 185lbs. I have a lot of muscle as well. Over the years they did exactly what I am doing now, going from 125mcg to 200mcg, but I had 0 symptoms.
My doctor never orders ferritin, folate or b12, but I will push for it. Vitamin D is now 120 but was 40 (75-250).
My antibodies were tested at 16, but I don't have the numbers. I am told I have autoimmune hypothyroidism.
Depending on what doctor I saw, the dosage of my thyroid meds was raised or lowered. When it had been lowered for a long time and the hypo symptoms were really bad, even with a raise my body would struggle to get back to "normal" for a long time. Last time I was hypo for 3 years, unable to work (or do anything much) for 18 months and it took me at least 6 months to get back to "normal". The muscle issues, I developed during that time, are still not fully resolved (it has been a couple of years now) but I'm getting there.
I would imagine that different factors can play into the speed of recovery. Age might have played a role for me. I'm over 65 and possibly things are not bouncing back as they used to when I was in my 20s. But I'm sure there are other factors as well that have an influence. Every person is different. I know it can be very hard to be patient and wanting to see results as soon as possible (yesterday would be good ). I mean, who would not want to feel well as fast as they can? Maybe wait some more weeks and see whether things (slowly) improve. Let us know when they do. In the meantime I wish you a much speedier recovery and all the best.
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). I mean, who would not want to feel well as fast as they can? Maybe wait some more weeks and see whether things (slowly) improve. Let us know when they do. In the meantime I wish you a much speedier recovery and all the best.
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