Hi
Newbie here, my GP has removed levo from my script. On my latest bloods the comments say "monitoring ; on T4 (levothyroxine?" ; no"
I was diagnosed hypothyroid in 2013, I now feel like a fraud and a hypochondriac with feeling tired, gaining weight, low metabolism, goitre.
Thanks for any feedback
Welcome to our forum and I don't know why the doctor has removed your levothyroxine.
Why on earth has your levothyroxine been stopped?
Have you had a recent blood test? Did you have the very earliest and fasting (you can drink water)? Did you allow a gap of 24 hours between your last dose of levothyroxine and the test? If not your results will be skewed.
If you can afford a private blood test, we have two private labs which do home pin-prick tests.
You need TSH, T4, T3, Free T4, Free T3 and thyroid antibodies.
You can ask GP and say you've taken advice from the NHS Choices for help/advice on dysfunctions of the thyroid gland - Thyroiduk.org.uk u. He or the lab may not do all of the above as they've been told that TSH and T4 are all that is required. Not so, we need FT4 and FT3 tested.
He should also do B12, Vit D, iron, ferritin and folate as everything has to be optimum.
You wouldn't have been diagnosed seven years ago and been taking levothyroxine all that time unnecessarily I think.
We now realise on this forum that many doctors will not make us well, in fact they can make our symptoms worse. They also know no clinical symptoms which puts us, the patient, at a disadvantage because doctors in the past knew all clinical symptoms and we were even given a trial of NDT and if we improved we had hypothyroidism and if not, we stopped NDT.
If you also get a copy of your most recent blood test and put them on a new post for comments.
It might be well worth getting a private test. If you do so, make sure you are well hydrated a few days before and warm hands before drawing blood. They are pin-prick blood tests. Many members have done so and have been happy with the results.
thyroiduk.org.uk/tuk/testin...
Blue Horizon and Medichecks are the labs and the latter has a special offer every Thursday but they may not always include the ones you need.
thyroiduk.org.uk/tuk/about_...
If we are on an optimum dose of thyroid hormones that suit us we should have no clinical symptoms and feel well.
I don't know, I collected my results and that was what was written
"Monitoring ; on T4 (levothyroxine) ? ; no"
TSH 5.2 (0.2 - 4.2)
FT4 14.1 (12 - 22)
FT3 3.2 (3.1 - 6.8)
TPO antibodies 1000 (<34)
GP comments - pls make phone appointment
As you can see, your TSH is elevated above range which means you are hypothyroid, in addition, you have thyroid antibodies and therefore have thyroid autoimmune condition otherwise known as Hashimotos. I would see another doctor, point out your over-range result plus your antibodies and insist your levothyroxine is restored although you will probably now have to start on 50 mcg and work back up to your full dose again otherwise you might feel even more unwell.
Edited: Perhaps you need to ring GP to find out what the notes mean.
Professor Toft - Counterblast to Thyroid Guidelines
rcpe.ac.uk/sites/default/fi...
With Hashimotos, thyroid levels can fluctuate and may need to be adjusted by 25mcg according to symptoms from time to time but meds should not be stopped. Levothyroxine should only be adjusted by 25mcg (50mcg at the most if absolutely necessary) or it makes us feel very unwell. Big swings up and down will cause many symptoms.
I am under an endo and I take 175mcg levothyroxine
Were you taking 175mcg when the above bloods were taken where you had TSH of 5.2?
Yes
Oh, it sounded like your GP had removed your prescription and you weren't on any meds according to your above post. In that case, you were undermedicated when the blood test was done because your TSH is elevated above the top of the lab range at 5.2. You needed a dose increase.
I asked the receptionist what the comments meant and she said as long as FT3 and FT4 were normal there was nothing to worry about
Change you GP please
I left a gap of 24 hours between dose and blood test, fasted and it was taken 8.30am
Samsam556.
You have done the correct thing for testing 
.
Phone and make an urgent request for him to phone you to discuss with him his remark on your test results to make sure he is going to stop levo or reduce it.
After he tells you his reasoning and that he is going to stop your levo you can then say:-
" you have had advice from the NHS Choices Thyroiduk.org.uk and have been informed that the aim is a TSH of 1 or below with a Free T4 and Free T3 near the top of the ranges is recommended and yours are near the bottom particularly FT3 which is at bottom of range and it should be nearer 6 than 3.
Ask him does he know that the aim is a TSH of 1 or lower is recommended and yours is above the range and T3 is the only Active Thyroid Hormone that is required in our millions of receptor cells in order for our body to function?.
Ask him for an increase in your dose and get another blood test in six weeks and increase in dose until your TSH is 1 at least.
You have high antibodies which is Hashimoto's (an Autoimmune Thyroid Disease) and going gluten-free can help reduce attacks on your thyroid gland.
Also ask him does he think you've not been taking the 175mcg daily as Nanaedake has suggested. He may think you've been missing doses. when you haven't.
Thanks I am under an endo and have informed him of what had happened
The GP I spoke to today asked me if I had been taking the levothyroxine every day. I said I had and she said in that case she didn't want to increase
She may not want to increase dose as you have an Endocrinologist who is prescribing. You could phone his Secreatary and leave a message about your TSH having risen to 5.2 and you are symptomatic and that you have been taking your 175mcg levo every day.
Yes I left a message with the endo a month ago because I knew in my mind I felt undermedicated and didn't want to reduce. My results now certainly prove that. I am hoping he will understand and I will inform him of everything this GP surgery has been doing.
FT3 is best in the top third of the lab range. If FT3 is low you'll not have enough active thyroid hormone to feel well. You have T3 receptors in your heart and brain and they need enough T3 for them to function efficiently. 'Normal' is not the same thing as 'Optimal'. Not sure what a doctors receptionist knows about it?? If you're under an Endo then Endo should be guiding your treatment.
When diagnosed I had a TSH of 32 (0.2 - 4.2 FT4 10.1 (12 - 22) TPO antibodies 89 (<34) so where GP is getting the information from that I don't need it I don't know
Change doctors
Ferritin etc done 2 weeks ago. Receptionist told me results have come back but GP hasn't looked at them
Register to view blood test results online. That way you won't have to ring GP to find out. If in England you are entitled. Ask reception to organise it for you and remember to ask for enhanced access to blood test results.
Post your own thread please rather than piggyback someone else's. Thank you
Hi I have came off mine ..a bit scared though ..dont know what to do
Could it be that your levels of B12 - Folate - Ferritin - VitD are all LOW - in which case the Levo you are taking will not work well in your body. Are you gluten free to try and reduce your anti-bodies ... ? Absorption could be an issue
Levo and anticoagulants
GP No Longer Prescribing T3
T3 no longer working
