I have been on Levothyroxine - between 50 and 100mg - currently 75mg - I had a partial thyroidectomy in 2011 for two different tumours in one side of the thryroid. Parathyroids still intact. Started levothyroxine in March 2013. After stabilizing on 75mg - my TSH reading runs between 2.1 and 4.8 - GP says up to 6 is within normal limits. Constantly tired, constantly cold, very dry skin, eyes, low mood (am on strong dosage of anti-depressant), hormones upset. Also have rheumatoid arthritis - pain levels are bad at present. Managed to lose 5 stone 12 1/2 pounds but since starting RA treatment weight slowly creeping back up even when sticking to a healthy eating regime - which is all the time. I take my levo at night so it does not interfere with calcium intake. When going for bloods should i not take the night time dose before the tests the next day and are the readings i am being told by the GP are "normal", actually not normal?
Would value any feedback - tired of feeling terrible 24/7!
Thanks!
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SAGirl123
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SAGirl, The goal of Levothyroxine is to restore the patient to euthyroid status and for most this will be when TSH is 1.0 or lower. Read Treatment Options in thyroiduk.org.uk/tuk/about_... Email louise.warvill@thyroiduk.org.uk if you would like a copy of the Pulse article to show your GP when you request a dose increase.
Thanks for the quick response - will email. The info on thyroid UK is excellent - the extended list of symptoms explains why i feel like everything is falling apart....!
Am going to request appointment with GP - possibly referal to endo.
If you already know this.... forgive me repeating it. TSH... stands for thyroid stimulating hormone. The body sends this hormone out to the thyroid when it requires more thyroid hormone. The less thyroid hormone produced, the higher and higher the TSH will climb.
When our thyroid meds are meeting all our body's needs, it is obvious that the TSH number will be very, very low and it should be, right? Why docs don't see this is beyond me but they go into panic mode when our TSH is what they call 'suppressed'.
Long before some evil genius discovered/invented the TSH test, hypo patients were treated and dosed by tracking blood pressure, heart rate and especially body temp AND SYMPTOMS. I know folks with a 2 - 3 TSH and they feel wonderful. There are others with the same TSH who feel lousy and will have hypo symptoms. This is when testing Free T3 and Free T4 levels can be helpful to see what is going on.
So.. there is no real 'normal' but if your thyroid is working as it should the TSH should be low. If we are optimally dosed with thyroid meds, our TSH should be low.
You should be given the opportunity to see if you feel better on a higher dose of meds. Tsh of 5 or 6 may be 'normal' but then so is .7 or 1, so why not see how you feel with your tsh down there? Also 75mcg of levo is a pretty minimal dose; you have plenty of wiggle room.
The Dr Toft article can help get your gp onsied. My gp agreed that some people only feel well when their tsh is under 1, but would never have come forward with that info if I hadn't gone in with the printout.
Everyone needs to do what they need to do to help themselves but I'd caution you not to get too committed to the idea of an endo. At least in the case of bog standard hypothyroidism, as often as they help they hinder. By the time I saw an endo I felt half dead and while he did raise my levo that was where his interest waned.
Thank you for all the responses - they make absolute sense. I tried to look up good endo's in my area and all their areas of main interest seems to be diabetes - NHS and private. Useful for my nephew, but not me! My GP did say that a seminar she went to thyroid issues advised to treat symptoms as well as going by the TSH levels - but she hadn't quite got her head round it. Will try and get some information together and make another appointment. if i take my levo at night - when would be the optimum time to have bloods, or not to take the meds the night before?
Is the Dr Toft article the same one referred to above on thyroiduk?
It's so good to hear from people who know how you feel.......!
The day before the blood draw, don't take any levo.
The day of the blood draw, get the blood taken as early in the morning as possible, then take a dose of levo immediately afterwards. Then take your levo at night as usual.
Don't eat or drink, except for water, for 10-12 hours before the blood draw.
Thanks - that helps. Last time i had bloods it was only 11 hours after taking Levo - and came back with the lowest level i have ever had for TSH - 2.1. GP was very happy with that - previous readings have been 4.8 or over 6. i had also had breakfast and coffee!
I saw an endo last August and was told I should have not taken meds for at least 24 hours prior to blood test. I'd only left 16 hours and he was quite cross about it. He said that it was not important when the blood test is ( as far as he's concerned ) as long as no thyroid meds for previous 24 hours.
I find this extremely difficult, but it is what I was told.
Look at the graphs on page 2. TSH is at its highest in the middle of the night. But since we can't get blood taken for testing then, we have to make do with the highest TSH we can get during working hours, which is no later than 9am.
GP has never mentioned anything to do with times for bloods. In fact she never told me, and neither did the pharmacist that taking Levo at similar time to calcium-containing products basically cancelled it out. i only found that out on line - and when i asked the pharmacist he then confirmed it. NHS GP's don't seem to be very clued up on thyroid issues.
Normal is whatever you feel good on. In my case that is in the minus figures. It sends the nhs into hysterics, but who cares - my health comes first now.
Going to push to try for "normal"! Between thyroid issues, rheumatoid arthritis, high liver functions, and treatment resistant depression - normal is going to be something to reach! am wondering whether the crippling pain i feel in my joints, despite the rheumotologist saying the inflammation is under control, whether the thyroid issue is actually to blame for the pain.
Thank you for replying! It helps to be getting a clearer picture on here. I phoned my GP to ask for the blood test to be redone - at first she wasn't keen and wanted to know what symptoms i was having - didn't seem to think they needed testing. When i asked her if she would request the t4 as well as t3 she said they would never test for t4 and in my local trust (Leeds) they would not test for the t4 either - i would have to live in Bradford to as for that. Is there somewhere that i could get the testing done privately - or am i likely to need to go to an endo? I may try and see a different GP at the surgery.
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