Is it standard practic for GP to ask patient for in blood test once a year to check Levothyroxine levels are correct ? Or should I be proactive and call them ?
I moved back from abroad to Somerset during 2020, signed up with local doctor but due to Covid never had a face to face with a GP.
I had my last blood test in July 2020 . Now the media has reported a shortage in test tubes , it seems yet another reason to delay in contacting the GP. Should I be asking for a blood test or will they contact me ?
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Suzc16355
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Is it standard practic for GP to ask patient for in blood test once a year to check Levothyroxine levels are correct ?
It's not about levels being correct, a number can't tell you if you are optimally medicated, it's about whether you feel optimally medicated. How do you feel? If you feel unwell then checking your levels would be a good idea because you may be undermedicated.
Should I be asking for a blood test or will they contact me ?
Who knows. Each surgery seems to have their own system. My surgery used to send me a letter once a year. Then I went 3 years without being invited for a test. Now, because I have other conditions and other regular monitoring tests, they throw in a thyroid test every time. If I didn't have those other tests I have no idea if they'd still be contacting me on a regular basis for a thyroid test.
I was at the surgery yesterday for an emergency appointment and they took blood. I asked the nurse about the current situation for "monitoring" tests as I was overdue for my regular 3 monthly test for my other condition. She said that "things are back to normal now" (meaning about certain restrictions on appointments/monitoring tests that were put in place when the first lockdown happened) so she offered to book me in for my regular monitoring test.
So if you want a test ring your surgery and see what the situation is there. If you feel well and don't want to risk having your dose altered then wait for them to contact you.
As they invariably only test TSH suggest you get FULL thyroid and vitamin testing done privately
How much levothyroxine are you currently taking
Do you always get same brand levothyroxine at each prescription
What vitamin supplements are you currently taking
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.
Also EXTREMELY important to test vitamin D, folate, ferritin and B12 at least annually
Low vitamin levels are extremely common, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis)
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Is this how you do your tests?
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
Thanks for responding and giving me some very useful links. I have had an underactive thryroid for 28 years, so I am gradually seeing an increasing my dose as the years go by. I have been living in The Netherlands , so got used to being tested every 6 months . The Levothyroxine brand has changed now I am in UK. I now take a mix of 200 m one day and 175 m the next, which according to the test last year was the correct amount. But I always feel tired and aching more and more. I will order some tests and also try to get some response from a GP. Your expertise is greatly appreciated
I was took Chewable Cal- D3 tablets for years but when I was switched to UK iCal-D3 Stirling Anglian pills 100mg/880 IU I broke out in Hives, so I stopped taking them. A doctor friend suggested taking Vit D two seperate tablets twice a day ( 10 pg with meals) and a Vit B12 (1000 pg) . I will check the bottles for biotin.Thank you for your advice
Do you know if you have autoimmune thyroid disease also called Hashimoto’s, diagnosed (usually) by high TPO or TG thyroid antibodies
About 90% of all primary hypothyroidism in Uk is due to Hashimoto’s. Low vitamin levels are particularly common with Hashimoto’s. Gluten intolerance is often a hidden issue too
Hi, from your experience, do GPs ever take Private testing results on board? Like so many on here, my experience of GPs is that they've only ever (reluctantly) done the basic NHS testing for TF and a few other things, but nothing changes bc they do not listen to patient symptoms. Invariably they reduce Levo and there's a yo yo response repeatedly. Btw I'm Hypo/Hash + ME/CFS. I had to go private in the end after 11 years of no support, and following various tests I was told I was severely Vitamin deficient (multiple, including immediately started on loading dose of B12 injections & then weekly B12 injections + trial of T3 - daily 20mcg). Yet GPs had continuously refused to listen to me or accept my B12 issue from their own lab results which does not acknowledge the further complications due to ME/CFS on top. They do not understand or try to understand Adrenal & Mitochondrial Dysfunction! Its a huge struggle to manage going Private on an ongoing basis when ill-health has been so life changing. I've ordered Thriva tests and will post the results when I get them for any advice. But continuing to go private with their much more expensive testing is not really an option (as for so many on here too). And if GPs won't accept private test results like from Thriva for example, I guess the only option is to self manage and order from abroad? Sorry in advance for any 'thick' comments or assumptions 😅Any advice appreciated. Many thx.
My GP ( I’m in London uk) Recently excepted my private blood test results for thyroid and I didn’t even have to show him the results on my phone. I was amazed but happy that he did except the results as he gave me an increase in my levo. I hope you get on ok with getting your blood test and I wish you well.
Hello Slow Dragon, I just called the surgery, ignored the nice lady's voice suggested "if its not urgent, go away and try another day". With everyone's encouragement , I stayed on the line. They were friendly but she said that due to Covid they have stopped doing yearly evaluations. I have a blood test booked for Wednesday. I have put my weight into a calculator and per your 1.6 mcg per kilo, I should be on 137.6 mcg not 175 one day and 200 the next. Perhaps I have to try a lactose free diet. As I have never been offered a chance to see a GP in person, I have no idea what the response to private tests would be.
My surgery does an annual review - they do it during your birth month, and it is written on my prescription form every month. I have to contact them to arrange it, but if I don't contact them, after a few months it shows as overdue on the prescription form, and one year the pharmacist said they shouldn't provide any more medication until I had had my review - which I had had at the correct time, but it hadn't been updated on the medical records!
Thanks Dawn, i I also a similar experince with my HRT tablets, nobody mentiuoned they need to review the prescription once a year. Boots just told me they had not been sent a new prescription. As Covid is dominating health care, I always feel reluctant to call the GP.
Hi, are you Hypo/Hashi too, and on HRT tabs? I'm considering HRT (using patches & merina coil), but have been significantly put off because of comments about HRT interfering with my hormones whilst on Thyroid meds (Levo @ 100mg daily & T3 @20mcg daily), along with ladies also mentioning weight gain whilst on HRT when weight is already an ongoing challenge with Hypothyroidism!! What has your experience been like? Any feedback appreciated, thx 🙂
Hello RhianR, I have been underactive for 28 years and now take HTR, as the hot flushes and other joys of menapause were horrible. I am very active, per my activity tracker watch ( top 5% in my age group) but I have always struggled with my weight. HRT did not increase my size but made life more bearable. My Dutch male doctor tried to tell me that feeling terrible was "natural". Finally I saw a lady menapause specialist and she explained that the risk factors were low and I really could not go on as I was. She gave me a low dose of HRT on the spot. Everyone is different, so my advice is, if you are really feeling low, hot and bothered, anything is worth a try.
Hi, many thanks for your reply. What that male Dr said to you is disgraceful but unsurprising sadly 😞 I've a few Qs: Do you take the HRT tabs or something else? and what dosage? Have your Thyroid levels had to be adjusted atall since taking HRT? Any issues with symptoms? Are you on T4 only or T3/T4 combined? My Dr is very reluctant for me to start HRT because of the impact on my Thyroid levels she says, and does not seem to get how the symptoms of low oestrogen & progesterone are just awful too. But she's still only in her mid 30s I would say so how could she possibly get it! Do you have Hashimotos too? You mention a Dutch Dr but are you in the UK? My Thyroid problems have always been very poorly managed by Drs here in UK, as for 99% on here it seems. Sorry for all Qs but just trying to understand your background picture compared to mine. Re Weight gain risk on HRT: I see that you're very active, but not me as I suffer from ME/CFS & cannot tolerate exercise 😓 And just getting about the house is my maximum, and I'm lying down 3/4 of every day due to Chronic Fatigue. I can rarely go out as I suffer horrendous physical crashes if I do. Before Hypothyroidism & Hashimotos, and then the ME/CFS I was extremely active, physically fit & strong. A picture of health. 11 years on and I'm now a completely different person. Thanku again for replying & Best Wishes 🌼
I wasn't called back in 2019, assume as I was "in the books" of an NHS endo at the time (who was rubbish). Last year I heard nothing, but I assume it was "due to Covid". I got a call last week inviting me in, though in my patient record it shows they should have called me 2 months ago, so god knows!I self medicate and TSH is undetectable, it would be interesting to see what they say...
My endocrinologist says i need to have blood tests every 6 months if my tsh is normal...If you change the dose you need to check after 6 weeks to see if your levels have change. I call my gp and ask for blood tests if i have new symptoms like insomnia or very dry eyes. They will never call me.
Interesting thread, our surgery refuses to do annual monitoring. A TFT of T4 and TSH is only done with deterioration of health. Consequently my husbands TSH has shot up again as he put his weight gain down to the pandemic WFH and his tiredness down to pressure of work. He is now on gradual increases of 25 micrograms of Levo every three months until the TSH comes down. Six months and he is still struggling. I gave up on the NHS some years ago and do biannual testing via Medichecks to maintain my thyroid health.
1.3.6 Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.
Monitoring
1.4.3 For adults who are taking levothyroxine for primary hypothyroidism, consider measuring TSH every 3 months until the level has stabilised (2 similar measurements within the reference range 3 months apart), and then once a year.
Personally I now only test privately. My GP agrees NHS test is waste of time ….they won’t test Ft3 even though I am on levothyroxine and T3
The problem with NICE guidelines is they are just that and i have been told they are not mandatory. This is part of a Formal Complaint response from an Endo at a London Hospital regarding Growth Hormone treatment but the view on the importance of the NICE guidelines remains. The GP states the same view- guidelines are guides. The PPG have challenged to no avail. Like you I self manage as my confidence and trust disappeared years ago. Part of the responsibility lies with NICE and the medical colleges not mandating good practice.
Photo of text issued by endocrinologist stating NICE guidelines are not mandatory
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