Am I on right medication?

Test results on 100mg Levothyroxine were

TSH -0.01 T4 30,5 reduced to 75mg Levo

TSH 0.56 T4 14.3

Retested to double check and my TSH IS 4.05.... lab did check my T4 or T3 as I requested, surely it's not just the TSH that counts? Can anyone advised me on what to do... Doctors are being awkward as usual, I have Fibromyalgia with Rhymatoid in my blood, they said once thyroid settled they would retest however they have refused to do it for three months??? I'm not right and feel so weak any help would be much appreciated... Thank you Sam.

23 Replies

  • How long was it left between tests and have you ever had a test for antibodies? You seem a bit all over the place.

  • 3 weeks apart not been tested for antibodies had lots of tests done over past three weeks... Stomach problems due to doctors dishing out pain killers... Taking pip,s now and anti sickness I have developed a low Torrence to any chemical smells in house hold products and beauty products... Also constant back pain in between my shoulders...:-(

  • I suspected that you hadn't given you body long enough on the different dose. I think the usual figure quoted is 6 weeks. Thyroxine takes a longish time to get into the system of a long time to decrease if you decrease your meds. It has a long half life unlike T3 which is very short.

  • Thank you for you help and advise, yes I thought that... It's a constant 30 year battle but the war continues I will not give up until I feel better x

  • Sorry to hear that you're feeling poorly. It's best to have the test at the same time of day and avoid taking any medication prior to test, take it after. Otherwise tests are really unreliable. The TSH test can be very unhelpful in my opinion. If you were feeling better on 100 Levo, then you need to increase back to 100. Many suggest that fibromyalgia is a sign of low thyroid. Good luck, hope you're soon feeling better

  • Hi, thank you for that... Doctor will only give me 75 mg... Dam it I took Levothyroxine 2 hours before test... How long would you recommend to be re tested?

  • 3 weeks between tests isn't long enough, it should be around 6-8 weeks.

  • Yes that's what I tried to tell them I've had thyroid problem for 30 years you'd think they'd listen to me... Not a chance lol grrrrrr

  • Hi You were4 on too much T4, depending on range. Always ask for them as different labs differ. T4 should be in top third of range. However, I suspect you need some T3 with the Levo. Only a blood test for all 3 will show you that.. Normally FT3 should be near the top of range, never over.I would have a test for all 3 from Blue Horizon, main site, finger prick, it is a phial so fine. well known to docs, all DIY. Quote TUk 10 for a discount.


  • Some people need high levels of thyroid hormones to feel well. Your medication should be regulated according to your symptoms, not by the blood tests.

    Do you have any close family with thyroid problems, as this could indicate a genetic condition?

  • If you are having problems getting your levo right and you have been diagnosed with fibro then try looking at the meds and their fillers. I have been ill for ages and diagnosed with ME and Fibro and Arthritis but it all started when they put me on levo. They have now admitted that the levo fillers are making me very ill and after 12 years, my body has stopped absorbing any levo from them. I forgot to take my levo and felt so much better so I knew it was the problem. I am now waiting for them to get some pure levo in called Tirosint, but in the mean time I have had to come off my meds completely. Last checked my T4 was 11.3 (11-24) and my TSH 22.5 (0.35-4.5), I must be a lot worse than that now but I feel so much more alive, well and healthier each day as I get the poisons out of my body. Once I get the pure t4 I should be getting my full health back as my friend before me has done. Take a look at this and you can see the reason they diagnose fibro, but in fact it may be the meds all along. Fibro is not curable but removing the possible cause is!

  • I totally sympathise with this situation as I'm currently in arguments with my gp who has reduced my levothyroxine twice from 150 to 100 and I feel terrible. My gp only test tsh levels and after pleading for him to do more he did t4 but I'm being told the levels are now right but I feel worse than I have in years. I'm considering going to see an endo privately as the gp won't refer me have you ever seen 1?

  • Bless you, like me don't give up... Yes mine has been reduced and stopped before... Muppets!!! Ask what T 4 result was as they say normal but it could still be at the bottom of range... Ring and ask I have done, they don't like it... But it's our bodies not theirs... Pitty there is not a daily test like diabetics can do... As levels can vary ie summer winter as the TSH is released from the pituitary gland... Let's hope we buck up now the sun is out... Keep me posted I'd be interested to know how you get on as are symptoms are similar. Sam

  • and I are treading the same path at the moment ( I haven't been diagnosed with Fibromyalgia though )but my muscle pain is making me feel really bad and restricting life.Every time the T4 is increased,some things get better but the muscular pains get worse.

    I had blood tests last Wednesday and it is the second time the TFT3 test request has been ignored.I am in touch with the hospital to see if there is a chance it can be done before seeing my Endo there on the 24th...he has already said I may need some T3 but how is he expected to judge that if they won't do the FT3 test?

    You wonder why it is even listed on the blood test forms don't you?The hospital are said to be going to ring me or send another

    form today.I could scream.I am fed up with lab assistants making assumptions when they don't know me or my symptoms.

    If I don't get something done soon I shall get a kit from Blue Horizon so that I at least get a result .I feel I need to know in case I need to look for another cause.

    I hope you get sorted soon and will look out for your reports

    Best wishes ....Margaret

  • Will do will hopefully seeing an endo in the next month and will let you know xx

  • Mel you should ask your doctor for a print out of you blood tests. He cannot refuse you them. Freedom of information.

    Jo xx

  • Doctors have no scientific evidence for adjusting doses of levo according to the TSH alone. Excerpt:

    Your observations don’t suggest to me that your pituitary gland isn’t functioning properly. In fact, your observations are consistent with what science tells us about a patient's T4 dose, her TSH level, and her metabolic health or lack of it. If the goal of a doctor is metabolic health for his patient, he has no scientific basis for adjusting her thyroid hormone dose by her TSH level. If the doctor is going to make the imprudent choice of treating the patient with T4 (rather than T3 or a T3/T4 combination), he should be aware of the relevant physiology and treat her on the basis of it. Otherwise, he's likely to ruin her health, as your doctor appears to be doing to yours.

    Go to answer to question dated January 25, 2002

  • Hi Shaws, yes your spot on and I've felt very unwell for a long time and now they are saying Fibromyalgia and possible stomach ulcer due to pain killers...they just wont listen to me, I'm at my wits end with it all and have felt so alone, I have found this site absolutely brilliant... I will not give up this war :)

  • If we are hypo (which as you know means slow) we can get stomach problems which GP's usually think is due to high acid, whereas in fact we have low acid. I myself discovered this in my own case. I now take betaine/pepsin tablets before or after every meal and have had no pain/discomfort since.

    If you look at the topics at the top of the page of the link previous to this, you will see Fibromyalgia: what is this and on the left-hand side column click on Fibromyalgia Research Foundation. I think you will find this info useful.

  • Yes, I do understand this, however they have put mine down to taking NAIDS for pain...thank you for the link very much appreciated :)

  • Hi Shaws, I have reflux and take betaine HCL too. How many tabs do you take before and after your meals. I can't seem to get it right.

    Jo xx

  • The ones I take say maximum of 3 tablets with food per day, so I take 1 each meal.

  • Thank you

    Jo xx

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