I am new to this group and this is my first post. have been taking levothyroxine for over 10 years, over the last year i have had a slow increase in feeling hot, hot sweats, and usual in the evening i feel very cold for a few hours then the sweats start. This seems to be cyclical as it is worse for at least a week each month. and worse each month. Over the last 2 weeks I have been very hot, last week started with headaches, hot all the time and the hot flushes/sweats gradually got worse and worse until by Thursday i was having them every 10-20 minutes, so tired, and sleepy, ( but couldn't sleep as sweats kept me awake0, aching all over and ended up in bed for 2 days. It has gradually abated but still so fatigued and headachy.
GP upped levo to 100 after last test 3 months ago and I had a check up one last week. (GP ringing tomorrow) I do not understand my test result (yes I am going t check out the files asap) can anyone help or read these results please.
Clinician viewed24 Sep 2020
Result typePathology
TestsThyroid function test
Filed byDr Emily Cooper at Derwent Practice (NHS Scarborough and Ryedale CCG) - 28 Sep 2020 11:49
ResultNormal
What you need to doNo Further Action
Thyroid function test Aim for TSH towards the bottom of the reference range for T4
replacement in primary hypothyroidism, targeting to around
1.0mU/L for symptomatic patients.
Advice on requesting and interpreting TFTs on Lab Med website
I'm afraid I have to disagree with the notes on your blood result!
Measurement of FT4 is of little additional value in patients stabilised on thyroxine. Please monitor using TSH.
Most of us would say the exact opposite ... TSH is a message from the pituitary to the thyroid, telling it to work harder if it doesn't produce enough thyroid hormone [so a high TSH indicates an under-active thyroid]. It is the primary tool in diagnosing thyroid issues, but not itself a thyroid hormone.
T4 is the inactive hormone produced by the thyroid, which converts to T3, the active hormone needed in every cell in your body.
Once you are on thyroid meds, TSH is pretty irrelevant, because your body is getting the thyroid hormone it needs from the medication - so you really need free T4 and free T3 testing to see how much hormone you have - and how well your free T4 converts to free T3.
As it is, your free T4 is nice and high - but you haven't had free T3 tested, and most of us would say that this is the most important test. As you still have hypo symptoms, it's quite likely that your free T3 is low - ie you are a "poor converter". But you won't know unless free T is tested.
If you can. try and persuade your GP to do full thyroid testing - TSH, free T4, free T3, thyroid antibodies [which if too high will show the reason for you being hypo is Hashimoto's] and key nutrients - ferritin, folate, vit D and B12 - your levo works best when these are good.
If your GP won't do this testing, it may be worth you getting private blood tests - you will see LOTS of posts here about private testing.
Well I have spoken to GP who said that it is rubbish re TSH and that is the NHS recommended way to test and no need to go further as mine was within normal range.
I got terribly upset and told her I couldn’t go on like this , she suggested it’s the menopause ( I went thro that at 43) I’m 65 !!! and suggested HRT I had to tell her I can’t take it as I’ve had breast cancer !!!
She was then very sympathetic and agreed to the blood test ( I’ve booked an appointment for first thing next week) and is going to refer me to the endocrine team. Though in today’s climate that could take a long time.
She also recommended I take /try evening primrose, red clover, black cohosh and sage.
I have also read here that my very dry skin, painful heels, sore eyesand other things are connected. I will post results of new tests when I receive them.
What your GP didn't tell you is that she only got 30 mins on thyroid when she did her GP training (albeit that this is a full half hour more than she got on nutrition) - and that the NHS is totally TSH-obsessed.
Please get your full test results and lab ranges after the tests are done - don't allow them to fob you off with "all OK" or "in range" or "normal" - you want numbers - the test results and the lab ranges. And you're not aiming for in range" - you want "optimal"
Thanks I was quite politely adamant and the tears helped lol. I will get full tests as I have access to my results etc.. thro GP online. Thanks, watch this space
Extremely important to regularly retest vitamin D, folate, ferritin and B12
Plus obviously TSH, Ft4 and Ft3
Do you know if you have autoimmune thyroid disease also called Hashimoto’s diagnosed by high thyroid antibodies?
AllThyroid testing should be done as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before blood test
Is this how you did this test?
Do you always get same brand of levothyroxine?
NHS England Liothyronine guidelines clearly state on page 13 that TSH should be between 0.4-1.5 when treated with just Levothyroxine
Note that it says test should be in morning BEFORE taking Levo thyroxine
I dont know how you got on with your GP but they have very little say on what thyroid tests the lab will do. Often the labs will overide the GPs request. The labs are imstructed to do TSH only. However if the TSH is very supressed they will then check FT4. Nothing else unless the GP thinks you are suffering with an over active thyroid.
It would be worth her checking your B12, vit D, iron and ferritin.
Make sure you get a copy of the actuals results.
Your best bet is do a thyroid panel test privately. Thyroid UK has a list on their website. You can then take your results to your GP but also post them on here. Lots of very knowledgeable people on here can help you.
Waveylines has said quite rightly to get a copy of your results but make sure they also give the ranges. The ranges differ from lab to lab so to comment we would need to know which range your testing lab has to interpret them accurately.
Was your test in the morning and after taking thyroxine?
You could increase your ferritin a little (iron) but it doesn’t sound like that’s the issue.
What did your Gp raise your thyroxine from? We’re you on 75 previously? And do you know what your tsh was then? Give the surgery a ring to find out. (You are allowed to know!) also ask the ranges or for print outs as others have said.
Tsh is a very rough guide and yes ideally t4 and t3 complete the picture, but t3 can vary a lot during the day. T4 is pretty stable when you’re on thyroxine. Tsh is relatively stable but has a fluctuation pattern during the day, year and also menstrual cycle (I know you’re past this!) so a morning test is best.
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