How often should you have your TSH levels checked

[Karenlb64]

Hi. I’ve just been told by my gp surgery that they advise testing TSH levels every one to two years now when you are stable. Has anyone else been told this by their gp? What exactly is considered stable, my gp considers this to mean that your last blood results were within range. Surely stable should mean that after being diagnosed you’ve had several results that are in range and about the same level.

[Nanaedake]

Once you've reached the optimal level of thyroid hormone for you then once a year testing is the norm on the NHS. However, if you start to feel unwell, or have symptoms then return for an earlier blood test to rule out thyroid imbalance. People with autoimmune thyroid conditions may experience fluctuations and need additional blood tests.

[Karenlb64 in reply to Nanaedake]

Thanks for your reply. If I’m honest I don’t really know how I’m supposed to feel. I’m going through the menopause and a lot of the symptoms are one and the same. Every time I’ve mentioned any symptoms to the doctors they tell me it’s my menopause and seem very reluctant to re test my thyroid levels. As it stands I’m due to go back for more bloods in February. I have been experiencing increasing numbness and coldness in my hands again recently which makes me wonder if it’s thyroid related.

[Nanaedake in reply to Karenlb64]

Ask for B12, folate, ferritin and vitamin D to be tested. If any of these are low they can give symptoms. Even if they are within the lab range, if low then thyroid hormone may not function optimally. Make sure you get a print out of test results that includes the laboratory ranges. Post them here for help when you've got them. Menopause symptoms are more likely to be hot flushes. Cold hands could be low vitamin levels. Lack of thyroid hormone will mean you run out of energy to do daily tasks or exercise because it controls your metabolism.

[Karenlb64 in reply to Nanaedake]

Ok. Thanks. Will post my results when I get them.

[shaws Administrator in reply to Karenlb64]

Considering that the medical profession seem to be completely unaware of any of the disabling clinical symptoms nor do they give us an occasional Full Thyroid Function Test (TSH, T4, T3, Free T4, Free T3 and antibodies) it is a struggle for the patient to recover their health. Most doctors haven't a clue what FT4 and FT3 are anyway.

I'd make a new appointment to have a blood test sooner than February. Just say you are symptomatic if he/she queries. We should have a blood test if we're symptomatic no matter when the last test was.

I assume you know the method for blood tests for thyroid hormones:-

The earlist possible test, fasting (you can drink water) and allow a gap of 24 hours between last dose of hormones and test and take afterwards.

A Full Thyroid Function Test consists of:-

TSH, T4, T3, Free T4, Free T3 and thyroid antibodies (if you've not had antibodies tested previously). The aim is a TSH of 1 or lower with the Frees in the upper part of the ranges.

Also test B12, Vit D, iron, ferritin and folate as everything has to be optimal.

[dbrowning02 in reply to Karenlb64]

Numbness and coldness are not a symptom of menopause that I've ever read. I'm also menopausal and hypothyroid and some are the same just do your research and read lots of books on both, knowledge is everything with both of these.

[vocalEK in reply to Karenlb64]

I have been experiencing increasing numbness and coldness in my hands That's not a menopause symptom. I got hot flashes and couldn't stand being warm. Lying in a soaking wet bed would wake me up and I had trouble getting back to sleep again. When the docs refused to give me back my HRT, I began ordering them from a pharmacy in New Zealand. Finally my docs let me back on, but now they want me to stop. I think they're just jealous because I look so young for 73.

[MissGrace]

Being ‘in range’ is just that - being in a constructed range - it is not being optimal. Being optimal is when you feel better and the symptoms are eradicated as far as possible. To get there, you may need some of the blood test numbers (esp TSH )to be out of range - as those ranges were not constructed for you as an individual but are generalised and incredibly broad.

If you feel well, then testing every year or when you feel symptoms return may be fine (the less contact with doctors the better in my book.) But if you are not yet well then you need to continue to increase your dose and test. Your personal optimum is your sweet point where you feel well, don’t be fobbed off. 🤸🏿‍♀️🥛

[CapnM]

I was lucky enough to have a GP that sat on the NICE committee for thyroid. She kept saying to me, GPs need to treat the symptoms not the metrics. (this was one point registered on a NICE working consultation which is now published.) if you feel good consistently annual test is typical. If you don't feel good demand more tests. IMHO many GPs don't understand this condition but also many are not treating you for your symptoms but the health risk of not doing anything. Many people on levo have no symptoms at all.

[tgirlnc]

Your TSH can be very unreliable especially if you have antibodies? Have you had your antibodies tested? If you have autoimmune, you should get bloodwork every 6 months once stable and include antibodies. Ideally you should be measured on your FT4 and FT3 which most of us "feel" our best when they are in mid-upper range of normal...but quite often if they drop below mid-point (and still in range) we can be symptomatic...the ranges are not definitive of each person.