Consistently high TSH results

I have been suffering with hypothyroidism for many years. Despite taking levothyroxine my TSH has been steadily rising and symptoms getting worse as I get older even though my GP has kept increasing my dose. I queried whether it would be worth testing my T3/T4 to find out if there might be a problem in conversion but the consultant that my GP wrote to said this was unnecessary and to buy myself some selenium tablets if it would make me feel better. My TSH has come down in last weeks blood test but is still the high end of normal, which is best I ever seem to get with it yo-yo-ing borderline / high. I'm on 250mg Levothyroxine daily and have been told I need to increase this by 50% should I become pregnant. We would like to start a family but my question is should I bottom out what my stable dose is before considering starting a family as I can't be sure that mine is being well managed? - I still experiencing severe symptoms: Weight gain, Slowed thought and speech, increasing Pins and needles (left arm - My rheumatologist is checking if this could be caused by my Rheumatoid Arthritis), Loss of libido, Dry eyes, Dry skin and Constipation. I know how severe the effects of insufficient thyroxine is on fetus so I am very keen to get some advice on whether I should be pushing for a second opinion, and if so how to go about it?

Thanks

Last edited by

9 Replies

oldestnewest
  • Trucall, If your TSH is high in range you are undermedicated. The goal of Levothyroxine is to restore the patient to euthyroid status and for most people this means TSH just above or below 1.0 with FT4 towards the top 75% of range. Read Dr. Toft's comments in Treatment Options in the link below. Email louise.warvill@thyroiduk.org.uk if it would be helpful to have a full copy of the Pulse article to show your GP.

    thyroiduk.org.uk/tuk/about_...

    NICE recommend that the TSH of women planning to conceive should be in the low normal range 0.4-2.0 with FT4 in the top 75% of range. Conception can be difficult when TSH is higher and the risk of miscarriage increases. Levothyroxine dose is usually increased by 25-50mcg when pregnancy is confirmed to ensure good foetal development during the first trimester when the foetus is entirely dependant on maternal thyroid hormone.

    cks.nice.org.uk/hypothyroid...

    If you can't persuade your GP to test FT4 and FT3 in addition to TSH it may be worth ordering a private thyroid test from Blue Horizon or Genova via thyroiduk.org.uk/tuk/testin...

  • Thanks - I have just moved and am registered with new GP so hopefully will get somewhere with them, if not I will definately be getting one of the private ones.

    Thanks for your input everone!

  • Hi trucall, it might be worth asking your doctor to test your levels of B12, ferritin and folate. The pins and needles suggest this could be a problem, and if the levels are low your body is unable to utilise the thyroid meds efficiently. Best wishes MariLiz

  • I already take folic acid - started when I was taking methotrexate for my RA, but kept taking it even though have stopped methotrexate in preperation for pregnancy.

    I take Iron tablets 2 a day (was supposed to be 3 but had to stop taking it in evening because too close to when I have my Levothyroxine and inhibiting uptake)

    I think they have checked my B12 before but is not consistent so I don't know what's happening with it recently - will request during next test.

    Thanks for your help :)

  • What are the results of your ft4 and ft3? It may be that you are either not absorbing the meds, due to some gastr. issue or you don't convert well, which is most likely the culprit. You need some t3 meds added and a reduction of levo, or no levo and all t3..but you will have to go it on your own , as doctors don't do the right tests or treat appropriately. You can order your own labs thru Blue Horizon, or so i have read.

  • I have no idea what my T3, T4, FT3, FT4, My last endo refused to test anything but my TSH. And told me that I must not be taking my meds correctly - either taking too close to breakfast (calcium in milk), too close to Iron tablets (even though there is a gap of>6 hours) or missing doses, which I am not. - I felt very demoralised and insulted. I did request whether I could perhaps try liothyronine if I were to get T3, but I was told that it was unlikely and just said to take even more T4. Is it safe to self medicate? If so is there any guidlines you could point me towards to build my confidence please?

    As an aside do you know if there is a maximum levo dose - 250ug seems high looking at some of the posts on here especially if my TSH is still consistently in the range 2-6.5?

    Thanks

  • You can keep raising, but it may not help. You need a new doctor who will look for answers. If you feel well, your Pituitary might be resistant or ..you just need a new doctor. You need a complete thyroid panel. Your doctor doesn't know what he is doing and is not very nice either.

  • Thanks Faith 63. I actually haven't felt well for years. I will definately be finding a new GP and endo to see if I can finally get to the bottom of this. Can anybody recommend someone near Cambridge UK please?

  • Well I spoke to my new GP and requested a full thyriod panel and I was pleasantly surprised when the bloods included most of what I hoped for. Antibodies and folate weren't tested however, my results were as follows:

    TSH= 0.26mU/L (0.35-5.5) [below range]

    FT4= 16.6pmol/L (10-19.8) [still<75% range]

    FT3= 4.0pmol/L (3.5-6.5) [<25% range]

    Vit D= 30nmol/L (30-50) [30nmol/L in April] whilst taking prescribed vit D tabs

    Ferritin= 38.4ug/L (10-291)

    Iron= 12.2umol/L (10-30.4) whilst taking prescribed iron tabs

    Transferrin level= 2.5g/L (2.5-3.8)

    %Iron saturation= 21% (16-50)

    Vit B12= 406ng/L (211-911) whilst taking over the counter b12 supplements

    Eosinophil count still above range almost double top of range - this happened before I was diagnosed and treated for RA I'm guessing autoimmune marker but anybody know relevance to Hypothyroidism? I do have hayfever and take antihistamines all year round and I don't think have an infection, although hard to tell when I feel so wiped out all the time.

    My concern is that on the printout it says review levo -TSH below range so when I see my GP next week he might want to reduce my levo. I still don't feel any relief of symptoms and want to push for synthT3 combo or NDT but don't know which would be best- any recomendations?

    My migraines, mood swings and depression are getting worse and I haven't even started reducing my amiltriptaline and sertraline - the more I read these symptoms could be due to my hypoth'sm so I could potentially stop these altogether which would be the ideal scenario before pregnancy because they both carry risks.

    Can anybody give me advice to best prepare me for this appointment - i'm dreading it - I'm afraid I will become emotional and be dismissed as a crazy hypochondriac lady?

    (CRP also spiked above range so eosinophil count could be RA)

You may also like...