I've had my annual TFT done at GP's surgery and for the second year running I've been told my thyroxine levels are too high and my medication is being reduced from alternating 100/75mcg to 75mcg every day. It was 100mcg daily for over a decade, dropped last year and after my health and weight being stable for over 5 years I started having symptoms such as feeling cold all the time, hands and feet just never being warm, feeling sluggish, skin really dry and within months of the meds being changed I'd gained around 2 stone in weight. There was no significant change in my diet or lifestyle and I've worked very hard to get that weight off again and now I'm facing exactly the same scenario again. I've never met, seen or spoken to either of the doctors who have made these decisions about my meds until they phoned after the blood test results. The one I spoke to today completely dismissed my concerns without asking me why I was concerned, told me it was coincidence that I'd gained weight, also told me that I don't know anything about my own health.
I know the routine blood tests only measure TSH and T4 and I'm not sure whether I should ask for T3 to be tested? I'm in the process of trying to move to another practice as I've not been happy with the current one for a while and when I move I will be asking for a full meds review and for the TFT to be repeated.
Any help or advice greatly appreciated, apologies for the lengthy post
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Biking_Granny
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Thank you so much for your reply, I feel in a much better position now to tackle this with my GP. I've always just trusted my GP to have my best interests in mind when treating this but unfortunately since my own GP retired 3 years ago the practice seems to be staffed by locums most of the time.
I was aware that early morning is the best time for the bloods to be done but I've never been told not take levothyroxine for 24 hours beforehand.
I don't know what the results are/were but will be requesting that information from the surgery asap. I think the brand of Levothyroxine may have changed once in recent years, and the only time I've had retests after dosage change as far as I can recall was during the initial stabilisation following diagnosis and radioactive iodine treatment.
My hypothyroidism isn't autoimmune, but as a result of the iodine treatment.
Thank you, I can’t believe I know so little about this condition I’ve lived with fit so long. I guess I was a bit naive to just trust what my GP was telling me. I’ll be back when I get the results.
Welcome to the group. If you could complete your profile it helps members understand your thyroid journey. Click on your image icon to start.
Do you have a copy of your latest blood results that you can share with us? You are legally entitled to this, ask at GP reception. In England you can get the NHS app and ask for permission to see your blood results on that by asking at GP’s reception.
Did you do the test as per the protocol recommended here? Recommended blood test protocol: Test at 9am (or as close as possible), fasting, last levo dose 24hrs before the blood draw & no biotin containing supplements for 3-7 days (Biotin can interfere with thyroid blood results as it is used in the testing process)? Testing like this gives consistency in your results and will show stable blood levels of hormone. Taking Levo/T3 just prior to blood draw can show a falsely elevated result and your GP/Endo might change/reduce your dose incorrectly as a result.
When hypo we get low stomach acid which means we cannot absorb vitamins well from our food, regardless of a great diet. For thyroid hormone to work well we need OPTIMAL levels of vitamins. Have you recently or could you ask your GP to test levels of ferritin, folate, B12 & D3? Private tests are available, see link for companies offering private blood tests & discount codes, some offer a blood draw service at an extra cost. thyroiduk.org/help-and-supp...
There is also a new company offering walk in & mail order blood tests in Crawley, Hove and Reigate areas. Check to see if there is a blood test companies near you. onedaytests.com/products/ul...
I don't have my results but will be asking for them and will share when I get them.
I wasn't aware of the protocol regarding not taking meds for 24hrs but will be sure to follow this in future and I will try to get an appointment with a GP next week to discuss testing levels of B12, D3 etc.
Thank you so much for your advice, much appreciated.
I think it is often the case, now, that GPs will only test vitamins ( or anything else you ask to be tested) if there is a reason such as indication of a deficiency, e.g symptoms (which can be found on Google/other search engine)
Thank you. I will check symptoms of vitamin deficiency and if I feel they fit with how I am just now then I’ll ask the doc about it and take it from there.
You are currently where most of us were before joining this forum. We get brushed off by GPs and do not realise they know little about thyroid problems, and some could not care less. Go away and take this little pill and dont bother me again...
So we go away and feel worse and worse and still no one listens.
So you are in the right place here. There is so much knowledge and personal experience and such helpful members, I can honestly say they changed my life. Whenever you can, have a browse through the forum and learn as much as you can, take it in a bit at a time.
Then like most of us, you can argue gently with your GP, give them facts and mostly they give in because they a)dont know b)dont care.
Good luck with your journey to being the proper you, the one you know is there. Hug.
Thank you 😊 I’ve already learned so much in just the couple of days I’ve been here. I intend to learn as much as I can so I can feel confident in standing up for myself when I speak to my GP. I don’t usually have a problem in standing up for myself but until now I’ve known so little about this that I have just taken the pill and not bothered them again.
Thank you so much for your support, I really appreciate it
I too had RAI thyroid ablation for Graves and when I turned 65 my dose of T4 was cut down as i too was told I was on too much medication though i was doing ok and complaining got me nowhere.
The next two years saw me in an ever increasing circle - details on my profile page - jut press the icon alongside my name.
I now self medicate and have my life back as best as I can and stay away and run my own yearly full thyroid panel to include the vitamins and minerals.
Just for reference as found on my journey back to better health :-
Thank you! It's just a minefield once isn't it? Your story reads like a series of let downs by those who should be helping you. Good to hear that you've taken charge and it's working well for you, long may it last.
Thanks for the references too, I'll have a look at them.
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