Is a TSH only test sufficient to give a true reflection on how your doing on Levothyroxine

After many years of visiting the Drs with the same symptoms anxiety rapid heartbeat, intolerance to heat eyes feeling gritty, i was always told it was anxiety and nothing else medically wrong with me. In fairness to the Drs blood TSH results did not show any thing remarkable up. My thyroid gland enlarged and was very tender at times, i did have a scan with showed multiple nodular gland with a dominant one, nothing was made of this and no further investigations done. Although they did agree to do a yearly blood test to check thyroid function. This continued for several more years same symptons and dominant nodule grew i asked for a second scan which confirmed the dominant nodule was now 5cm and the gland was very inflammed, which led me to have an appointment with an endocrinologist who advised to have a total thyroidectomy re the nodules. Total thyroidectomy done and pretty straight forward although i had to stay an extra night as my gland released excess hormones during the op so hence i was still not made aware that i had Graves disease until my follow up appointment 3 months later. I was started on 125mg levothyroxine but reduced to 100mg of thyroxine after first blood test 3 months after op showed that my TSH was suppressed and T4 had too much free thyroxine in the blood. I was feeling that i was hyper. 3 months later bloods done again

TSH 0.774 MIU/L RANGE 0.27-4.2.

T4 was requested but lab deemed not necessary due to TSH result normal.

All though i do not feel terrible i still feel slightly hyper, palpitations sweating muscle aches..

So my question is the TSH sufficient to say my levels are right?

Or go with my gut feeling and have a full thyroid panel done privately.

15 Replies

  • If you feel slightly hyper you almost certainly are slightly hyper. It would be useful, if only for the record, to measure your fT3 and fT4 also. It makes sense to reduce your levothyroxine dose a little to see if you get better. There is no ideal point in the reference interval for TSH, that's why it is an interval, it is where 95% of the presumed healthy population are and each person will be at a different point. There is a need to keep TSH low for patients who have had thyroid cancer, even if they are slightly hyper. I don't know if there is any reason why Graves' patients should have a low TSH.

    I would ask your doctor if you can reduce your levothyroxine to 75 mcg and see how you go. If that's too much you can always alternate between 75 one day and 100 the next. 100 mcg is a moderate dose for someone who has had a total thyroidectomy. However, sometimes a total thyroidectomy is not total, it can be difficult to locate all the tissue and it is possible that a bit of remaining tissue is still producing hormone. This might explain why you are still a little hyper on a moderate dose.

  • Thankyou for your reply you have confirmed for me on all points exactly what i have been thinking.I will speak to my Dr about my concerns and take it from there,if no joy i will have a full thyroid panel blood test done and post my results here.

  • The only way to properly check thyroid function is full panel including antibodies.

  • Well, in this case I guess antibodies will not be relevant?

  • Lots of holistic doctors don't believe that the TSH alone is sufficient to make an assessment of the patient's thyroid health. I'd go with my own intuition and have my tests done privately.

    Those members who've hyperthyroidism will also respond.

  • If they have not been done ......Suggest you ask GP to check levels of vitamin d, b12, folate and ferratin. These all need to at good (not just average) levels for thyroid hormones (our own or replacement ones) to work in our cells.

    When you get results suggest you make a new post on here and members can offer advice on any vitamin supplements needed

    If you can not get GP to do these tests, then like many of us, you can get them done privately

    Blue Horizon - Thyroid plus eleven tests all these.

    This is an easy to do fingerprick test you do at home, post back and they email results to you couple of days later.

    Usual advice on ALL thyroid tests, (home one or on NHS) is to do early in morning, ideally before 9am. No food or drink beforehand (other than water) If you are taking Levo, then don't take it in 24 hours before (take straight after). This way your tests are always consistent, and it will show highest TSH, and as this is mainly all the medics decide dose on, best idea is to keep result as high as possible

    Vitamin and minerals levels are very important, but standard NHS thinking, doesn't at the moment seem to recognise this. You will see, time and time again on here lots of information and advice about importance of good levels of B12, folate, ferritin and vitamin D, leaky gut and gluten connection to autoimmune Hashimoto's & Graves too.

  • NO.

  • Thankyou for your replies, i will pre book a DRs appointment at least i can speak to one of the Drs that is happy to listen to you and not just look at numbers.Will also get a private blood test done, just want to make sure that my surgery will be happy to act on the results if necessary.

  • To answer your main question, TSH certainly isn't enough. It is a very rough measure, but also unreliable as some people can be very ill /perfectly comfortable at unexpected numbers.

    FreeT3 is the most diagnostic number in the thyroid panel for whether you are taking enough thyroxine. It's the measure of active hormone in your blood. I don't know too much about working with hyper, but likely your fT3 will be over range.

  • Perhaps a bit of information from STTM can help:

  • anxiety rapid heartbeat, intolerance to heat eyes feeling gritty are all side effects of Levo. Read the product documentation it says so. Change to Natural Dedicated Thyroid and you will loose weight and not have anxiety rapid heartbeat, intolerance to heat eyes feeling gritty.

  • I am not a docto or but I also have hypothyroidism and possible Hashimoto's. I joined a Facebook group called FTPO-thyroid issues a couple years ago and have learned SO much from this site! It is a closed group so ask to join and they will check to make sure you are a real person and admit you to the group. There are several spin off groups under the same FTPO (for thyroid patients only) like for those without a thyroid gland, those who had thyroid cancer, gut issues, Lyme issues, and Graves' disease. The admins of the group are great and can look at your lab results. The group is based on the book, STTM-Stop The Thyroid Maddness. Please, look at the group, you might find them really helpful.

  • TSH is a pituitary hormone. It cannot tell you if your T3 and T4 levels are high-normal, which is often what it takes to feel well. Go for the panel TSH/FT3/FT4/rT3/TPOAb/TGAb, which should be sufficient for most cases of primary hypothyroidism.

  • Hello,

    I would absolutely say from my own experience that you can't tell how well you are doing from the TSH, or even the T4, as everyone is clearly different. You have to pay attention to your own symptoms, which definitely sound hyper. I spent a year feeling I was going crazy, on what I now realise was a slghtly too-high dose of Levo. My results looked perfect on paper – my TSH was at the low end of the range, and my T4 was a bit above mid-range. I had read everywhere that a low TSH and an above-average T4 was meant to be good, but for me that has just not been the case. Luckily my GP paid attention to what I reported and we have adjusted the dose so I feel OK. I've now learned that I only feel comfortable with a higher-mid-range TSH and a mid-range T4. You MUST trust your symptoms, and adjust til you feel things are right. Good luck!

  • Thankyou i totally agree that you must listen to your own body and symptons and not figures. Spent so many years going to the Drs only to be told continually that bloods was normal only to find out that i had untreated graves. Like you i am wandering if i am one of those people who don't do so well with alow TSH. Just need to have a private full panel blood test done as with my tsh result its a no go re extra thyroid tests.

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