Thyroid levels

Hi everyone so sorry if someone has posted this question before. I have been borderline for underactive Thyroid levels since 2004 . Didn't know only when I was really poorly and went with a whole page of symptoms and pleaded with my doctor to help me.

He looked at me as if I was mad. I have CMT but this was not related every time I have a problem I get oh it could be your CMT which I knew it wasn't. Anyway I was agitated , and in so much pain and tears. Couldn't believe he asked if I wanted a sedative to calm me down. (Probably needed it though )Well that was the final straw and I practically screamed at him saying I was ill and not depressed and would he please listen to me. His face was a picture I couldn't believe I did it. Any way he took blood test urine samples etc . Turns out I had a kidney infection and was put on antibiotics very quickly. He phoned bless him to see how I was and promptly told him no better and that I was still agitated, cold and that I had a swollen tongue etc. two days later he phoned to say my thyroid was very low.

Outcome was he gave me tablets to correct it. And have been on them for five months, I have just had another blood test so I asked at reception for a copy of the results. She just said your TSH is 3.7.

I am still feeling very cold irritable etc. before I see my doctor would like to know where I am in the range so I can at least ask sensible questions ie would these symptoms ease on a higher dose and not just to be told my test is normal. Any help really appreciated. Another coincidence is I was diagnosed with fibromyalgia in 2005. I wondered if there could possibly be a connection to the thyroid.

Sorry it's long winded but just found this site on the web.

June x

7 Replies

  • Welcome to our forum and your story relates in some way to many on this forum.

    First I will say that for someone on levothyroxine, your TSH is too high for your to feel reasonably well but to only be on it for five months, you've gone through a very rough time.

    Doctors somehow believe that if we are hypothyroid as long as the TSH level falls within the 'normal' range - job's done and no more increase is required. Wrong, wrong, wrong. We usually need a TSH of around 1 or lower or suppressed. You haven't given the ranges on your results and they are usually in brackets but it doesn't matter at the moment.

    We have to read and learn as much as possible if we've to recover because the training of medical students these days of thyroid gland dysfunctions is woefully inept. Fibromyalgia/hypothyroidism can be linked.

    Some hints to follow:

    Blood Test: Have the earliest possible appointment . Leave 24 hours since last dose of levo and test as it may skew results and fast. Take levo after test.

    Take thyroid hormones on wakening and wait approx 1 hour before eating. Some foods interfere with medication. I leave 4 hours between hormones and supplements which I have at lunchtime. Some prefer bedtime dosing, in that case you must leave 2 hours after eating before taking hormones. If you've had a fatty meal it should be longer. Food can interfere with the uptake.

    Ask for Vitamin B12, Vit D, iron, ferritin and folate to be tested. They should be towards the upper range.

    Always get a print-out of your blood tests with the ranges for your own records (we are entitled - some charge a nominal sum for paper/ink) and so you can post if you have a query.

    Email and as for a copy of the Pulse Online article by Dr Toft (ex President of the BTA) and read and discuss question 6 with your GP asking for more levothyroxine.

    This link is from the Director of the Fibromyalgia Research Foundation (died two years ago):

  • Welcome to the forum, Dragon1949.

    TSH 3.71 is high in range. The goal of Levothyroxine is to restore you to euthyroid status and for most people that is when TSH is just above or below 1.0 with FT4 in the top 75% of range.

    Dr. Toft comments on dosing and blood levels in Treatment Options in the link below and it is the full Pulse article Shaws recommends you request from Louise Warvill.

  • Hi not sure I understand should I ask him to lower the dose if it is to high.?? When they took the last blood test I went this morning to reception and asked if I could have a copy of the test results, so I could at least ask the doctor sensible questions. the receptionist couldn't understand the results so called a nurse who came out and said oh your TSH is 3.71 and wrote it down. That was all that's on the paper. So I am none the wiser.?Not sure what high means nobody has sat and explained to me. My dr phoned when the first test came back and put me on ,hope I spell it right levothyroxine, over the phone and that was I am completely in the dark. It sounds as if my doctor is awful when I read this back but I can assure he really is brilliant with me and when I had my melt down he sat for nearly an hour when I told him he wasn't listening. But we didn't realise my thyroid had dropped so the issue wasn't raised. He would prob sit and go through everything if I go to see him, but they are so busy and if I can go prepared it will take less of his time.

    Thanks June x

  • June, when the pituitary gland detects low circulating hormone (T3) it pumps out Thyroid Stimulating Hormone (TSH) to prompt the thyroid gland to produce more thyroxine (T4). T4 is a pro-hormone which is converted to T3, the active hormone, in the thyroid, brain and major organs.

    So, the higher TSH is, generally the lower the T4 and T3. High TSH indicates undermedication and requires more Levothyroxine to raise T4 and T3. When the pituitary gland detects sufficient circulating T3 it will produce lower levels of TSH.

    You need a dose increase until TSH is just above or below 1.0 which is where most people are comfortable although some do need it lower or suppressed <0.03.

    Dose adjustments are usually in 25mcg increments every 6-8 weeks followed by a blood test to check levels. Leave 24 hours between last dose and blood draw to avoid peak levels of Levothyroxine skewing results. If possible arrange the blood draw early in the morning and fast, apart from water, as TSH is highest early in the morning and before food so this may help 'score' a dose increase if you are still symptomatic.

  • Thank you so much for putting it so I could understand. My mind was boggling after all the sites I have been on trying to find something out. I will print the above out and take when I see him next week. I am so glad I asked as if it was high I would have asked him to lower it. He told me it was normal when I first phoned to get the last result back. I do feel much better than I did but still not right. That's why I asked for the reading, must say the nurse looked taken back but thanks for pointing out we are entitled to ask for a copy. When I am in next week I will ask for a copy of the whole report.

    Many thanks so kind of you to reply at this time of night xx

  • You're welcome, June. Print off the link I posted above and highlight the bit where Dr. Toft discusses thyroid levels and show it to your GP. Some GPs think that mid range is good but it really is too high for most people to feel well.

  • Sorry forgot to say will follow the links you gave me. Xx

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