Hi just looking for some advice. I had my blood test last thursday at 10.50am and I had taken my thyroxine around 8am. I just had a call from Gp reception and told the GP wants to reduce my thyroxine from 125mcg to 100mcg. My TSH level is 0.06 and free thyroxine is 26, I have asked for a copy of results but haven't collected it yet. They want to put me on 100mcg for 4 weeks then test again. My last blood test was march 2020, TSH was 0.50 (range 0.27-4.2) and free thyroxine was 22 (range 12-22). At that time I had tested twice with high antibodies for coeliac and GP wanted me to be tested for coeliac but when we went into lockdown I decided just to go gluten free and have been since then. I was waiting to see a rheumatologist and had two phone calls with him in may 2020 and december 2020 re my symptoms which had mostly improved by the second phone call with him. In january 2021 I had a call from GP surgery offering me gluten free food on prescription so I am guessing they have made a coeliac diagnoses on blood work and improvement of symptoms on the gluten free diet. I feel better and toilet habits are vastly improved as have stomach issues, just an occasional blip when I think I have glutened myself. I don't want them altering my dose of thyroxine unless it is absolutely necessary because they increased it to 150mcg back in 2019 then 4 months later a doctor said I don't know if you are over or under medicated so I opted for over and went back to 125mcg which I had been on since 2002. I had overactive thyroid and had RAI in 2002, it took a while but the hospital eventually got my thyroxine dose right and I kept well then I moved location joined this current surgery and 4 months later they accused me of not taking my medication which I never ever have. It's the first thing I have done every morning for the last 20 years. As far as I am concerned my health issues started at this surgery. I even suspect they trialled me on placebos to see if I really needed to be on thyroxine without checking my history, I hadn't seen any of their doctors as a new patient but had had 2 prescriptions. Maybe that's just me being paranoid though. Sorry for the rant but any advice would be appreciated.
Blood test: Hi just looking for some advice. I... - Thyroid UK
Blood test
annawan
I had my blood test last thursday at 10.50am and I had taken my thyroxine around 8am. I just had a call from Gp reception and told the GP wants to reduce my thyroxine from 125mcg to 100mcg. My TSH level is 0.06 and free thyroxine is 26,
Was this a planned test or a surprise test with no notice?
Always advised here, when having thyroid tests:
* Blood draw no later than 9am. This is because TSH is highest early morning and lowers throughout the day. If looking for a diagnosis of hypothyroidism, an increase in dose of Levo or to avoid a reduction then we need the highest possible TSH
* Nothing to eat or drink except water before the blood draw. This is because eating can lower TSH and coffee can affect TSH.
* If taking thyroid hormone replacement, last dose of Levo should be 24 hours before blood draw, if taking NDT or T3 then last dose should be 8-12 hours before blood draw. Adjust timing the day before if necessary. This avoids measuring hormone levels at their peak after ingestion of hormone replacement. Take your thyroid meds after the blood draw. Taking your dose too close to the blood draw will give false high results, leaving any longer gap will give false low results.
* If you take Biotin or a B Complex containing Biotin (B7), leave this off for 7 days before any blood test. This is because if Biotin is used in the testing procedure it can give false results (most labs use biotin).
These are patient to patient tips which we don't discuss with phlebotomists or doctors.
So because you had taken your Levo before the test you have a false high FT4 level. You don't give the reference range (we always need ranges when posting test results as these vary from lab to lab), but even so 26 is higher than any upper range limit we see here. However, I do appreciate that your other results show a range and it may be that the range is the same.
Your TSH level at 0.06 means that your TSH is suppressed and your GP may be just looking at that, but TSH is useful for diagnosis but not particularly useful once on thyroid meds, this is because TSH is a signal from the pituitary to tell the thyroid to make hormone if it detects there's not enough and in that case it would be high. Your pituitary has detected there is enough thyroid hormone so the TSH is low. To get an idea of your thyroid status it's the FT4 and, more importantly the FT3 result which tells us that.
So really you need the test repeating on your current dose of Levo but done under the correct conditions mentioned above. If FT4 still comes back high then before you agree to a reduction in dose you should ask them to test again including the FT3 as it's the FT3 level which indicates whether or not we are overmedicated.
At that time I had tested twice with high antibodies for coeliac and GP wanted me to be tested for coeliac but when we went into lockdown I decided just to go gluten free and have been since then.
Do you mean TPO antibodies were positive confirming Hashimoto's?
they increased it to 150mcg back in 2019 then 4 months later a doctor said I don't know if you are over or under medicated so I opted for over and went back to 125mcg which I had been on since 2002.
Sorry, that doesn't make sense. Why didn't your doctor know if you were over or under medciated. Your results would tell your doctor if you are over or undermedicated, what were the results at that time?
I had overactive thyroid and had RAI in 2002, it took a while but the hospital eventually got my thyroxine dose right and I kept well then I moved location joined this current surgery and 4 months later they accused me of not taking my medication which I never ever have. It's the first thing I have done every morning for the last 20 years.
Did you have positive TRab and TSH antibodies to confirm Graves disease as the reason for your overactive thyroid?
Sounds to me like you could have had Hashi's all along, test results and symptoms fluctuate with Hashi's and patients have often been accused of not taking their Levo when their results show a hypo episode.
I even suspect they trialled me on placebos
Personally I doubt this very much.
Thanks for the reply Susie. My blood test was planned but they couldn't give me an earlier appointment as they are saved for those fasting and mine was a thyroid function test. I will ask for ft4 and ft3 to be tested a month from now but I doubt they will test ft3 as even with ft4 they don't always test that. My GP said in the past he would ask the lab under what circumstances they would test ft4 and they did at his request so I might have to fight to get ft3 tested. It was definitely coeliac antibodies I had and months later they were even higher which is why the doc wanted me to have an endoscope then lockdown happened soon after that conversation. To be honest I don't know if it was graves, I just know that 20 years ago I walked into my then GP surgery very ill and she asked how long my hands had been trembling took blood and sent me for an ecg. She then called to tell me I had an overactive thyroid and quickly arranged for me to see an endo, then I had scans then RAI. I had never heard of graves at that time and never asked any questions because I had been told I was overactive and I accepted that I needed the treatment for that which put me underactive. The GP that said she did not know if I was over or under just happened to be the one on duty when I was asked to go in to discuss my blood results and not the GP I had been seeing re all the symptoms I had. I did ask her at the time though if I could have hashis and she said she didn't know so she wasn't very helpful or clued up on thyroid issues. Re "I doubt that " lol, back then I had a conversation with the pharmacist after I got a letter about thyroxine being recalled for some reason, that was in 2012, that happened months after they said I had not been taking my meds. The pharmacist said things can go wrong at the manufacturing stage occasionally but not very often. So I was concerned I had duff meds for more than 3 months and luckily my annual blood test was due during that time. I have swung between something going wrong at the surgery or at the pharmacy, all I do know is I was fit and healthy till I changed location and surgeries and had no symptoms. Even when they said I hadn't been taking my meds I had no symptoms. It was over a year later when I started to get joint pain then many other symptoms followed gradually. Of course no-one ever told me I should take supplements either which is why I ended up with a B12 deficiency and anemia. One of the admins on here said my B12 was dire, it was 123 at that time and I told him that I was told here that it was dire and he just nodded his head. Last time I had it tested it was 429 after supplementing with oral sprays.
the concern about placebo's is definitely paranoia , it's just not something they do. ,, but being accused of not taking the tablets doesn't help with being paranoid i know .
Has the brand of levo changed since you changed surgery ?
i went downhill at a new surgery and eventually realised i was being given different brands every couple of months, whereas at my previous surgery they gave 3 moth prescriptions and the brand was rarely changed .
Assuming the fT4 range is still the same [12-22]... ( you need to check if it is ) , but if it is, then 26 is over range and this does suggest a very small dose reduction is worth a try .... by very small i mean 12.5mcg .. ie down to 112.5mcg .... i suggest you negotiate this with your GP rather than 100mcg ....if they say "we can't prescribe 12.5mcg tablets" ask for "alternate day dosing 100mcg/ 125mcg "
Your fT4 result WILL be falsely high, due to you taking levo a couple of hours before test , but even taking this into account it might still be very high in range or even slightly over ( there is a peak in blood of fT4 about 2-6 hours after taking Levo tablet.. but most GP's won't be aware of this .. as they don't teach them to take 'time of last dose' into account)
Your previous test that was 22 [12-22] ... can you remember if this was also done shortly after taking that day's levo ?
if they were both done a similar time after last dose, then the latest test does indicate that your fT4 really is higher now than it was back then .. could this perhaps be a result of being gluten free .. might mean you need slightly less now ? ... going through menopause meant my needs reduced from 150mcg to 125mcg the 112.5mcg .. so it can happen that something changes and we need a bit less than before .
4 weeks is a bit too soon to retest after a dose reduction it should be 6 weeks at least... blood results (especially TSH) won't have had enough time to settle , and 4 weeks is too soon to know for sure how you will feel on slightly lower dose .. in my experience , the first 4/5 weeks are likely to feel unsettled /undermedicated/ wrong , but from week 5 onwards, (for me at least) thing's improved gradually .. and i'm glad i gave it a bit longer... by 3 months i realised i was sleeping much better than i had for years , and all sorts of odd aches and pains had gone away .
I find 12.5mcg adjustment is enough to make a big difference... due to my fT4 going very over range i was asked to reduce from 125mcg to 112.5mcg , which felt naff for 5 weeks but then improved and i felt ok . However i was then asked to reduce again to 100mcg because my fT4 had (illogically) gone even higher... eventually i reluctantly agreed, and tried it .. same thing happened first 5 weeks were naff, felt unsettled / undermedicated/ wrong, but this time, instead of symptoms improving, things got worse and i stayed constipated and brain dead and it was getting worse rapidly , so i argued for them to put it back to112.5mcg despite my still over range fT4..... after a few weeks back on 112.5mcg i was ok again and have been fine on that for a couple of years now .
If they had reduced my dose to 100mcg all in one go, i would never have found out that 112.5mcg is actually much better for me than 125mcg was .. i didn't feel overmedicated on 125mcg ,,, but i do feel better now on 112.5mcg than i did on 125mcg .. but it took more than 4 weeks to find that out ... more like 8-12 weeks before i started to feel the benefit.
So you could argue you took the levo too close to the test and that is why your fT4 is over range ( assuming it is ) ~ GP will probably not agree it's relevant , and may say your TSH is still under range so they still think you are overmedicated even if FT4 is in range. ~ And then you need to explain that you have understood and considered the 'risks' of low TSH and you still don't want to reduce dose ... (see link below for evidence of "no increased risks if TSH is 0.04 or above" )
Or ,You could try to negotiate a smaller reduction, and give it a try .. you might be pleasantly surprised .. i was.
Your TSH is lower now than previously, but the low TSH wouldn't worry me at all as long as it's 0.04 or above on levo .. see my reply to this post ( 3rd reply down ) healthunlocked.com/thyroidu...
But if high fT4 can be avoided it is probably best to do so (as long as you can still feel well on slightly lower dose ) ..... people with higher fT4 levels (either naturally or from levo) do seem to have other increased risks according to recent research findings ie cancer cell proliferation is positively associated with T4 level.
Hi Tattybogle, thanks for that info. I can't remember what brand I initially got when I changed surgery but I do remember thinking the 25mcg was bigger than usual. Too lazy to put my reading glasses on at the time and just took the tablets as I had always done over the years. Prior to changing surgery I would occasionally get different brands but was neither up nor down and in good health. Current GP put for Activis and Wockhardt on my prescriptions about 3 years ago and I have only used them since even though I often had to travel sometimes as the local chemist often didn't have them. For 20 years I have always taken my tablets in the morning before being tested, except in more recent years for fasting bloods. I won't in future though. I was thinking about asking for alternate dosing but will ask for a 12.5 decrease first and will not book next bloods for 6 or 7 weeks. I am glad you mentioned being on a gluten free diet might possibly mean I need a reduction as I was thinking that but thought I was being silly and wanted to hear it from someone that has more knowledge than myself. I have often read that thyroid patients are better when gluten free. I will discuss this with my GP. TY
Hello Annawan :
Can I just add that it is imperative that you are dosed on your T3 and T4 levels and not a TSH.
You have Graves Disease and had RAI thyroid ablation and now your HPT axis - your Hypothalamus / Pituitary / Thyroid feedback loop is broken as there is now no Thyroid there to complete this loop and the basis of the theory behind the TSH blood test.
The only way to know if your are over medicated / under medicated is to run the correct blood tests namely a T3 / T4 blood test to see where your levels sit.
T4 - is inert and a storage hormone and needs to be converted by the body into T3 the active hormone that runs the body and said to be around 4 times more powerful than T4.
We generally feel at our best when our T4 is in the top quadrant of the range as this should in theory convert to good level of T3 at around a 1/4 ratio T3 /T4.
Your ability to convert the T4 into T3 can be compromised non optimal levels of ferritin, folate, B12 and vitamin D - RAI is known to trash vitamins and minerals.
RAI induced primary hypothyroidism is said to be more difficult to treat as the RAI slowly burns out your thyroid in situ :
RAI induced primary hypothyroidism can also trigger symptoms similar to that of fibromyalgia and to that of Sjogren's Syndrome.
A fully functioning working thyroid would be supporting you daily with trace elements of T1. T2 and calcitonin plus a measure of T3 at around 10 mcg plus a measure of T4 at around 100 mcg.
Some people can get by on T4 only :
Some people find the T4 seems to stop working after some time and need the addition of a little T3 - Liothyronine to replace " their own lost T3 " making a T3/T4 combo :
Some people can't tolerate T4 and need to take T3 only :
Some people find their health better restored by taking Natural Desiccated Thyroid which contains all the same known hormone as that of the human gland.
You are not paranoid and are just looking for confidence in your health care provider, as we all expect , but sadly many of us end up having to arrange our own blood tests and likely end up self medicating as our TSH doesn't respond or behave according to the guidelines.
P.S. I had RAI thyroid ablation in 2005 and fine and well until around 2013/4 and then became very poorly - please see my profile page :
ncbi.nlm.nih.gov/pubmed/306...
Pennyannie, Ty for that response, I think you are right as something has gone wrong. Have to go pick my grandson up from nursery but will look at your profile when I get home.
No worries, take your time and please read around the links for more information.
Hi Pennyannie. Just read your profile, wow you have really suffered, glad you are feeling better. I too had a dry mouth for some time but nowhere near as bad as you had. Fine now though. I also had one extraction after another from when all my symptoms started the last extraction last november. I hate this condition it's ruined my best features, my hair now thin and lank, my eyebrows which I never plucked in my life as they were a perfect shape and my legs which now have those cholesterol deposits and all of that happened around the same time as the joint and muscle pain started. I was rarely at the doctors, only once a year for blood test so you would think when I started making appointments for joint pains back pain frozen shoulder then hip pain at least one doctor would have connected the dots but no. It's wear and tear was always their answer. Me could it be something to do with my thyroid condition, no it's wear and tear grrr. I had 3 years of that in a surgery that has 11 GP's and then I waited 5 weeks for an appointment with the GP I was registered with who I had never met, it's hard to get him as he is a popular doctor I was told. It was then that the full panel was done and I feel I deteriorated more than I should have because of the lack of care. Something has gone badly wrong over the last 20 years because my experience then with the GP who acted quickly and the endo who saw me quickly was good. I still have the book the endo gave me that he had written so I knew I could possible get other conditions in the future, I didn't know there were so many though until recent years.
Well, there's a lot to take in and understand and I'm just so glad I found this forum and started my learning curve.
I too trusted that the doctors knew best but found myself becoming more and more ill by being made to get my TSH into the bottom of the range just to complete the computer tick box exercise.
I now trust myself and buy my own full spectrum thyroid hormone replacement and haven't been back to the surgery since 2018.
I have written to the doctor and explained what I am doing and offered myself up for the yearly thyroid function test providing a T3 and T4 are run and I've never heard back , though around a year later Levothyroxine was removed from my prescription which now is just for eye drops and they are allocated as 1 drop per eye once a day which hardly touches the sides when i need help, so of course I self medicate these too.
Which book was recommended to you :
I purchased Elaine Moore's first book Graves Disease A Practical Guide :
My goto was and still is Your Thyroid and How To Keep It Healthy written by a doctor who chose to resign and Barry Durrant - Peatfield writes to educate and empower patients for better thyroid health.
As you have not thyroid function having had RAI and are gluten intolerant (possibly coeliac) before agreeing to any dose reduction would STRONGLY recommend getting FULL thyroid and vitamin testing done
Request GP test vitamin D, folate, ferritin and B12 before you will consider reducing levothyroxine
What vitamin supplements are you currently taking
Do you always get same brand levothyroxine at each prescription
Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine
For full Thyroid evaluation you need TSH, FT4 and FT3 tested.
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
Low vitamin levels are extremely common, especially after RAI for Graves and with gluten intolerance
Recommended on here that all thyroid blood tests early morning, ideally before 9am 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
List of private testing options and money off codes
thyroiduk.org/getting-a-dia...
Medichecks Thyroid plus antibodies and vitamins
medichecks.com/products/adv...
Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test
bluehorizonbloodtests.co.uk...
If you can get GP to test vitamins then cheapest option for just TSH, FT4 and FT3
£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code
thyroiduk.org/getting-a-dia...
Hi SlowDragon. I recent years I always use the same brand, activis and wockhardt. I was and probably still am anemic and GP put me on a course of iron and folic acid late 2018 since then I have taken iron supplements sometimes, 2 or 3 times a year as I don't want to take it all the time without knowing my levels. My B12 back then was also very low 123 (191-663) 2020 last tested and B12 was 427 (191-663) last time I saw GP just shortly before lockdown he wanted to see me again in may and let him know if I wanted B12 injections, haven't seen him since then. Ferritin then was 31 (13-150) Folate 4.7 (3.9-26.8) I know that's bad but it was worse in 2018. I supplement vitamin D again not all the time but did throughout the winter and currently using better you B12 spray and for the last 4 weeks I have been taking selenium and zinc. I have high cholesterol but refused statins and told him that was just medicating the symptom instead of finding the cause and at that time I had joint and muscle pain and know that statins can cause muscle problems so didn't want to tempt fate, I also asked at that time to have D tested but he said they don't do that as we are all deficient in this country. Throughout the last 2 years I have been well, I never had the jabs never wore a mask and have faired better than my family some jabbed some not but they all have had viruses and I only had a mild cold. I really thought my thyroid bloods would be fine and I am surprised they are not.
Likely to need addition of T3 prescribed once you gat all four vitamins tested and optimal levels
Vitamins are low because you likely have very poor conversion of Levothyroxine (Ft4) to active hormone (Ft3)
Test vitamin D, folate, ferritin and B12 at least once a year
Optimal vitamin levels are
Vitamin D at least around 80nmol and around 100nmol maybe better
Folate and Ferritin at least half way through range
Serum B12 at least over 500
Very common to need to supplement continuously to maintain optimal vitamin levels
Work out which brand levothyroxine suits you best and then….Always get same brand levothyroxine at each prescription
Always test TSH, Ft4 and Ft3 together…..privately if necessary
Ty SlowDragon. I am writing down all the info you all have given me and now know I must be assertive in asking for t3 and t4 to be tested along with the vitamins and minerals. I will make an appointment with the GP that has been best in the past though I don't know how long that will take as he is popular. Many thanks.
annawan, you mention 2012 and levo being withdrawn. I bet that was TEVA, because that happened to me. 100mcgm tablets were inconsistent, so folks were not getting sufficient dosage. I was very ill in 2012 in spite of taking my levo tablet daily. Paranoia is often a problem when we are hypothyroid and undertreated. With the help of this group I got back to good health and told the GP I didn't care what my TSH was, I was only interested in feeling well. My TSH is always below range and now I take some T3 with my levo and my T4 and T3 are both higher in the range. My scrips specify which levo and which lio should be dispensed and I will never have TEVA again.
Hi crimple. When I got that letter back in 2012 I went into the pharmacy and asked them to check and see what levo brand I had and was told they don't keep it on the system. I find that strange because I only used that pharmacy from spring 2011 till summer 2012. I told the pharmacist I use now about the GP saying I hadn't been taking my tablets and she said someone else told me that same story but she couldn't remember what year. It's on my scripts now which brand they have to give me and I open it in front of them to make sure and a few times it has been teva so I hand it back. That's usually only when there is a stand in pharmacist though.
Very interesting. I had been given 6 months supply of TEVA just before I found out there was an issue with it. When I realised there was a problem I asked to speak to the pharmacist at the GP surgery. I never got to speak to her but did send a snotty letter. Shortly after we moved house and I was immediately informed by my old surgery that I had to change GP surgery. The new GPs were not helpful with my dosage, up and down at frequent intervals until I found this site and began to stick up for myself. I am always very suspicious of excuses from GP's and pharmacies now! I do hope you get sorted.
TY Crimple. I intend to stand up for myself as I have had enough of being fobbed off. I think it is better to always see the same GP if you can find one that's interested so they can build up a picture, otherwise seeing different ones is of no help, probably haven't looked at your recent history and usually start with what can I do for you then do nothing. Thanks for the responses, it helps to know I am not going slightly mad lol. When I get the necessary tests I will come back with the results. Take care.
I do agree about trying to see the same doc. You are definitely not going mad, just not getting the correct treatment for you.look forward to seeing your next test results.
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