Decrease in Levothyroxine

Hello  Thank you for your reply.  I find it both frustrating and confusing not knowing what is causing a particular  symptom.  Many anxiety symptoms are similar to low thyroid and other conditions.  For example I have osteoarthritis in my knees,neck, spine and starting in the hips. When I ache all over or am in  pain I often wonder have I overdone it or could be thyroid etc.  

With regard to the reduction in vitamin D3 supplements it is a long story.  Back in 2012 I broke my wrist.  After a Dexa scan revealed osteopenia my then Gp checked both Vit D and calcium levels.  Calcium was fine vitamin D low at 39.  I was prescribed 2,200 iu D3. At the 2013 blood test the levels had gone up and I was told to continue at the same dose.  2014 the blood test I was told it was too high and to reduce it to half so I started taking one every one day.  I had my usual routine blood test in 2015 and I received a standard letter from the surgery saying that although my levels were around 50 they would like them a bit higher so could I purchase 1000iu Vitamin D and take them You can imagine my reaction.  I phoned the surgery and explained that I was already taking 2,200 every one day so was already on 1100.  I was referred back to the doctor and was told to go back up to the full dose.  My new gp (I moved 200 miles away last summer) says that the dose I am taking is too much (level is 85 so high but not toxic) and that they usually only give 400iu vit d and calcium for diagnosed osteopenia.  I should added that I recently had a repeat Dexa scan and there was a very very slight improvement in bone density.  My gp also seems to think that the high vitamin D3 has caused the change in my TSH over time and that is why it went out of range.  I should add they use the range which I think is 0.3 to 5.  I understand that some doctors think that it should be lower not above 3 and ideally around 1.  Is this what you have been told?  I am not entirely happy with taking the lower dose of vitamin D3/calcium and have asked that they check both calcium and Vit D levels when they recheck thyroid function in March.  It will be interesting to se what they are.  I have also just read on line that the new blood pressure tablet I am taking which is a diuretic can affect thyroid results.  It seems to me that you have to be your own doctor.  I will be happier once I get the results of my heart stress tests which were done almost 3 weeks ago.  I'm nearly 70 and moved up here to be near daughter and family.  It is well known that many thyroid patients have low vitamin D levels so am not totally convinced about the change in Vitamin D3 dose.  Time will tell I suppose.  Quite frankly I just want to try and get on with enjoying my life even thought I am sometimes restricted because of pain.  Sorry to  go on a bit but I am really fed up and not knowing what or who to believe.  It is funny though that the heart symptoms have really improved since lowering the thyroxine.

You don't mention when you first reduced your thyroxine but I hope you are feeling better and will continue to do so.  Thanks.

Oh I see that makes sense. I was told Tsh should be ideally around 1-2. I came off levothyroxine completely about a year ago as whatever dose I was at I still felt awful. I now take thyrogold which is a natural dessicated thyroid treatment from America. I feel a lot better in myself. Doctors don't like to make you aware that there are treatments other than levothyroxine and a lot of them don't know this is the case

Hello Thank you for your reply.  Your post makes interesting reading.  Would you mind me asking how old are you and how long have you had thyroid problems? 

I can only wait and see what the next lot of blood test results reveal.  I sort of think that over time my vit D levels will go down too much and then possibly TSH might rise too much.  Doctors don't seem to agree on blood test results and dosage.  My other moan is side effects of medication and interactions.  I have had to point this out on more than one occasion over the years.  I wish you well and hope that you can get back on track again soon.

Thank you libralady.  I am 65 and my tachycardia I was having with levothyoxine stared full blown when I was 61.  Today, I still do not feel as I did when taking the higher  dose of thyroid med.  your symptoms sounded so similar to mine.  I know that some people have to cut back on the med as they get older.  That's the only reason I know of why I was gradually having to decrease  over the years. I am sorry you are having problems and I do know about the aches and pains since my dosage has to be lowered. Wishing you well and hopefully better answers from your doctor during your next visit

Hello again,  Sorry you have been having a hard time over the last few years.  I do hope I can get better answers when I go back in March for repeat blood tests.  I might even go back before.  Today I am aching all over whilst I know some of is arthritis I still don't know if there is something else going on.  I hurt all over my back upper and lower, neck pain in thighs, knees and going down to feet at times.  I have had this before but it does seem that it has got worse since the lower dose of thyroxine allbeit only 2 weeks.  Like you I did know that as you age your dose some times has to be lowered there has to be other reasons that come in play as well.

Yes I have often wondered why we are not referred to an endocrinologist.

Gp's don't seem to know much about thyroid disease.

Glad you are feeling better and hope it continues.