After annual bloods in july a duty doctor told me to reduce meds, 125mcg and 100 mcg on alternate days as I was overmedicted and retest in four or 5 months, I think that was too long.
However I had bloods done again on 15th november and phoned the surgery 9 days later as I hadn't heard from them and asked for a print out of results. The guard dog on reception gave me a lecture on how busy the doctors were and had never stopped working through "covid" She then said something about wrong labels and the lab sent the sample back for the correct labels, when I tried to get her to expand on this and ask for a doctor to call me she went off on one again so I ended the call
4 days later I went in to collect repeat prescription and found out a label from my july test had been put on the november sample so the lab couldn't accept it. I demanded a call from a doctor and had a call within 20 mins, he arranged another blood test for the 11th december, full panel including liver and kidneys and by yesterday I was concerned so called the surgery for a print out of results. First page minor abnormalities- not significant, second page, normal not sure about that. However they did not test T4 only TSH. I notice on the print outs from last year and this year it states hyperactive when it has always said hypo and wondering if being overmedicated has anything to do with being gluten free since we went in to lockdown. Sorry for the rant but it has been so stressful.
This surgery will only give early morning tests if fasting otherwise tests are from 11 am and my current test was 11.30 am. I took 100mcg levo just after 9.30 am and breakfast about an hour later. Usually take meds 7am or earlier.
We recommend taking blood tests fasted before 9am (when TSH is at its height) last dose of T4 24 hours before and last T3 8-12 hours
TBH this result doesn't tell you much without your fT3... looking at your May 2022 results and if that test was taken under the same conditions as this one you are probably slightly underdosed now... how do you feel?
Best you can do to find your true position would be to grab a private full thyroid panel test and follow the correct protocol... then post those up
Unfortunately they no longer do early morning testing unless it's a fasting test. The result in may 2022 was early morning fasting test, no levo or food. I felt well enough and had asked for the may 2022 to include T3 as the previous month they said I was overmedicted. My usual doctor who I haven't seen since 2020 sent me a letter " your TSH is slightly below the normal range, if you are feeling well in yourself then this is a level I would be reasonably happy with" I was fine but a year later a different doctor requested reducing the dose. About 6 weeks in to the lower dose I started getting niggly leg pains and by october extreme left leg pain which eased off when walking, then a rash on my neck and shoulder came back. I hadn't had that since going gluten free due to coelic dignosis. I struggled to get out the bath the other day, joints stiff and sore, I don't know if it's coincedence or to do with the reduction.
For some reason I couldn't post the second page as each time I tried it removed the first page. I have already decided to test privatley in 3 months time as I am so annoyed they didn't test T4
TY for your advice. I have had no contact from the doctors so I guess they want to keep me on the lower dose. I would have thought after their surgery messed up they would have called me re my december results. They are nowhere near as busy as they were pre 2020 and in march that year my usual doctor called and asked me to go in to see him. That was re the coeliac diagnosis and he spent an hour talking to me so to say the NHS is back to normal is not true, certainly not at my surgery who have 14 GP's. Due to what you said re undermedicating I think I will retest in six weeks instead of waiting 3 months but will they accept private tests is the question. Only time will tell. Thanks again for yoyr help
This is half the problem they are quite happy for us to be on a lower dose despite it making us symptomatic, I'd be inclined to request an increase half way back to where it was and see how that feels... if they won't then I'd do it anyway if you have enough
Aching joints can also be due to low Vit D, folate or ferritin... if you have those results pop them up and we'll have a look 🤗
If you felt well on higher dose you could have just refused to reduce dose
It’s now highly likely you are not on high enough dose and will develop further symptoms as vitamin levels drop
Recommend ALWAYS getting FULL thyroid and vitamin testing before ever agreeing to dose reduction
If Ft3 is not over range you’re not over medicated
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)
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
Testing options and includes money off codes for private testing
Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee
my current test was 11.30 am. I took 100mcg levo just after 9.30 am and breakfast about an hour later.
Obviously this would cause false high Ft4 result and TSH higher if tested 8-9am
If GP says " I have to reduce your dose because the guidelines say i can't let you have a below range TSH" .....
The first paragraph in the NICE (NHS) Thyroid Disease, Assessment and Management guidelines says :
nice.org.uk/guidance/ng145
"Your responsibility
The recommendations in this guideline represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, professionals and practitioners are expected to take this guideline fully into account, alongside the individual needs, preferences and values of their patients or the people using their service. It is not mandatory to apply the recommendations, and the guideline does not override the responsibility to make decisions appropriate to the circumstances of the individual, in consultation with themand their families and carers or guardian. "
Comprehensive list of references for needing LOW TSH on levothyroxine
If symptoms of hypothyroidism persist despite normalisation of TSH, the dose of levothyroxine can be titrated further to place the TSH in the lower part of the reference range or even slightly below (i.e., TSH: 0.1–2.0 mU/L), but avoiding TSH < 0.1 mU/L. Use of alternate day dosing of different levothyroxine strengths may be needed to achieve this (e.g., 100 mcg for 4 days; 125 mcg for 3 days weekly).
TY Slowdragon. This morning I tried to attach the second page from the lab but it kept removing the first. This page is marked normal yet my RBC is still high though it has come down a bit HGB is still high but has reduced a bit too. Eeyore has told me how to do it so I will try again.
I wonder if by doing that they would think it might look as if they aren’t doing their job properly?
A few years ago in discussion with one of the doctors at my practise when I asked for T3 to be added, and if they wouldn’t do it I would get a private test, the doctor jumped to attention and said, no need to do that we can do the test!
Good thinking . Glad you got gp to listen . I now don't know if I need 3rd . Test to see if results are vastly different again,again . But no oint as gp will refuse and not take notice of private ?
A couple of months ago or so I had a blood test that resulted in a slight reduction of my Levo, that blood test had included T3.
A week ago I had another blood test supposedly to find out if things had changed much. I specifically asked for the same tests to be done. When the results came through the other day I was surprised to see only TSH and T4 had been tested for thyroid wise that is.
What a complete waste of everyone’s time because I’m no wiser now! I’m seeing a different doctor tomorrow about something else so I shall mention this to her.
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