Hi, new here and newly diagnosed this past week. My tsh is 22.9 and I have just started taking levothyroxine.
Mostly I am having varying levels of fatigue that seem to be linked to stress or moving too much. Finding it difficult to figure out what amount of activity is right.... as too little also feeds the fatigue.
Impatiently waiting on levothyroxine to make me feel better. Will this be 4-6 weeks or npt until we find the right dose?
Hi PrairieSunflower, welcome to the forum. 
How much levo did the doctor start you on?
I'm afraid it's highly unlikely that you will find the right dose in 4 to 6 weeks. Six weeks is the time for the first retest and an increase of 25 mcg. You will probably need several increases before getting near to the right dose. It's a long, slow process, I'm afraid.
Thank you, been finding reading online unclear in this regards.
I have been started on 50mcg and as you say follow up test in 6 weeks.
Have had such a miserable summer barely getting out of bed as my hrt needed a change as well... At least feel half better but not enough.
Well, at least he started you on the correct dose. Far too many doctors start patients on doses that are too small.
Sorry you've had a bad summer, but you could start feeling a bit better in a couple of weeks. And, any improvement is better than none, I find. You just have to grit your teeth and stick with it.
Good to know it's a sensible starting dose. I didn't know what to expect as online said a regular adult dose was 100-200.
I'm reading all I can and avoiding everything it says so my medication is as effective as possible. Not pleased about the suggestion of no calcium rich foods for four hours, dairy has always been part of my breakfast. But willing to everything to make meds effective.
welcome to the forum
Many people take Levothyroxine soon after waking, but it may be more convenient and perhaps more effective taken at bedtime
Levothyroxine is an extremely fussy hormone and should always be taken on an empty stomach and then nothing apart from water for at least an hour after
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No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap.
Some like iron, calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away
(Time gap doesn't apply to Vitamin D mouth spray)
If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test
If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal
Which brand of levothyroxine have you started on
Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine
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)
Has GP tested vitamin D, folate, B12 and Ferritin yet
Or thyroid antibodies
If not request/insist these are tested at next test
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
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)
Well, there's a huge difference between 100 mcg and 200 mcg. So, that wasn't very helpful information! lol But, with all hormones you have to start low and increase slowly to give the body time to adjust between increases. Otherwise, it can make you feel worse, rather than better.
Not pleased about the suggestion of no calcium rich foods for four hours, dairy has always been part of my breakfast.
Well, that's very vague, and not very helpful, either. Depends how much you eat, doesn't it.
Calcium can bind to thyroid hormones, thereby making it difficult to absorb. But, you'd have to eat a hell of a lot of butter or whatever for it to have much effect. My breakfast always consists or butter, cheese and milk, and I usually have it one hour after my thyroid hormone. One hour should be enough for the hormone to have left your stomach, so it should come into contact with the hormone. So, don't deprive yourself too much. A good protein breakfast is very important.
I did read levothyroxine is potentially better taken at night, but I get a strong drowsy effeft from taking progesterone so can only take that at night. I assume those would conflict taken together.
Sounds like good tips about taking levothyroxine before blood tests.
I tend to take my thyroid dose when I get up for a pee in the night between 4-6am which avoids other interactions... Levo needs an empty stomach, no food for an hours after and 4 hours away from any other tablets
Horrah! It sounds like you have a sensible GP willing to increase dose by regular testing. The NICE Guidelines don’t actually mention increasing dose every 6-8 weeks instead they want people on a full replacement dose from the start and retest in 3 months. And, as has been pointed out, starting at a high dose can be horrible for the body. Although, some people have got on fine with it.
Is my tsh of 22.9 bad? I have a theory that I was ill in the start of June and wondering if my body attacked my thyroid as a result.
Yes.
A typical TSH range is something like 0.4 to 4.0.
While treatment is justified over 4.0, there is an arbitrary "rule" not to diagnose until we reach 10.0. (That leaves quite a number of people hanging on for ages - significantly hypothyroid but doctors not treating.) And, obviously, 22.9 is more than double that.
(There are reasons it isn't always quite that cut and dried, but in general, 22.9 is definitively hypothyroid and needs to be treated.)
I was tested a year ago and it was 2.93. So a drastic change in that time.
Sorry - didn't notice your reply. (You need to click on the blue Reply button otherwise you are answering yourself and I don't get an alert!
Yes - a very considerable rise.
You really need Free T4 as well (preferably Free T3 as well).
My free t4 is 8.5. Don't know what that one was a year ago.
I don't see t3 listed
Do you all remember having triggers for fatigue before your hypothyroidism was under control? Currently, I feel tired daily but some things trigger a day or two of fatigue, like getting upset /stressed or discovered this weekend riding my bike (had no choice, car being fixed).
I felt exactly like this when badly under medicated on Levo.We feel upset or stressed about things and maybe don’t sleep well which in turn sets us back further.I found walking helped but don’t over exert yourself as I found taking too much on left me flattened for a couple of days.Hopefully in the next few weeks you feel improvement and then when you find your optimum dose you will be right back to your old self again.
Yese exactly like that.
Also, if I do something that would normally cause sore muscles that would mostly feel better the next day... Now of feels worse for longer.
I'm finding it reassuring reading other people's threads and hearing experiences are similar to mine. It's also discouraging how long it may take to feel normal, but it helps to have realistic expectations too.
Management of Patients Symptomatically Unresponsive to Levothyroxine: Natural Desiccated Thyroid Extract or the Combination of T4 and T3?
Coeliac Disease and Levothyroxine
Temporary addition of Liothyronine added by my Endocrinologist but reluctantly given as he does not think it will help me with my fatigue.
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