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Posted , 4 users are following.

lyndsey19103
lyndsey19103

I've been on levothyroxine for 18 months started at 50mg increased to 75 mg and now on 100 mg tsh has gone from 17 down to 6 now after recent bloods gone to 8.5 hence the increase to 100 mg however I still feel the same now ( awful ) as I did before I even started on medication feel they have not helped me at all. Had my tpo bloods done they came back >500 my thyroid receptor level was < 1.gp says take the increased dose have bloods done 8 weeks. been 3 weeks still no better 😔. gp says nothing else in england they can prescribe for this just bloods and increases if necessary. so my question is has anyone found anything say herbal or anything else i could give a go ?? 1.gp="" says="" take="" the="" increased="" dose="" have="" bloods="" done="" 8="" weeks.="" been="" 3="" weeks="" still="" no="" better="" 😔.="" gp="" says="" nothing="" else="" in="" england="" they="" can="" prescribe="" for="" this="" just="" bloods="" and="" increases="" if="" necessary.="" so="" my="" question="" is="" has="" anyone="" found="" anything="" say="" herbal="" or="" anything="" else="" i="" could="" give="" a="" go="">

0 likes, 19 replies

19 Replies

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  • gill43753
    gill43753 lyndsey19103

    Posted

    Hi Lyndsey,I know exactly how you feel.Afraid I've been on Levothyroxine for 4years,and still feel no better.Have been referred to a different Endocrinologist,as I was getting nowhere with the previous one.They seemed to think if your bloods are within range,and on tablets,that's it.Doesn't seem to make any difference that I feel no better.I personally feel that Levo just doesn't suit me.However,must add that I also have other underlying pituitary problems,which makes things even more complicated.Have had one appt with new Endo so far,and back again in September. Can only suggest that you ask to be referred to an endocrinologist to discuss your problems.I think endos can prescribe different to what GPs can.Good luck.Gill
    • lyndsey19103
      lyndsey19103 gill43753

      Posted

      Hi Gill thanks for reply my dr did say that if next test abnormal then she will refer me on so I'm going to insist on it now armed with a bit more knowledge now thanks to this site 😊
    • barbara98940
      barbara98940 gill43753

      Posted

      Hi gill, I noticeb your reply has been released by the moderator. I thinkit may have gone to be moderated because you didn't put spaces after the full stops and the automatic filtering software thinks it is a web address.
  • gill43753
    gill43753 lyndsey19103

    Posted

    My reply is being moderated,but also wanted to add that I'm on 200mcg Levothyroxine.Gill
    • barbara98940
      barbara98940 gill43753

      Posted

      200mcg is quite high. I think the dose should 1.7mcg per kg of body weight. Are you converting T4 to T3 ok?
    • gill43753
      gill43753 barbara98940

      Posted

      I don't know if I'm converting,as still to discuss test results with Endo.However,I know my T4 has to be at the higher end of normal,because I actually have secondary hypothyroidism,as pituitary not producing hormones,so doesn't make thyroid work.It all becomes very complicated because I've had Cushing's disease.Pituitary surgery to remove tumour leaving me with hypopituitarism.Gill
  • barbara98940
    barbara98940 lyndsey19103

    Posted

    I've sent you a PM with details of a natural desiccated thyroid you can get.
    • barbara98940
      barbara98940 lyndsey19103

      Posted

      Regarding dosage, read the Q&As on the site. There's info on knowing how to determine if you are on the right dose and a checklist of about 20 symptoms you can grade. I weigh 56kg and think somewhere between 150mg when i wake up and 150mg 6-7 hours later might be my eventual dose, possibly 450mg a day in split doaes; (600mg per day split across 2 doses was too much). I'm in UK and had no trouble ordering from US. You'll jus t need to fill in an international shipping form that they have on the site. To limit my losses in case anything went wrong, I ordered 1 bottle of 90 tablets of 150mg tablets and it cost about £35. I did all this with the full knowledge of my GP.
  • shellyC19
    shellyC19 lyndsey19103

    Posted

    Hello Lyndsey:

    I am a Nurse (RN) and I live in the USA.  First of all normal TSH is 0.34-5.60 and it is similar to UK's range.  I suffer with Hashimoto's Disease and it causes me low thyroid symptoms. 

    I was once on Levothyroxine and it did nothing for me, except create an irritable bowel.  My TSH was never correct or near normal ranges.  What happens with some of us is this:  "Levo" is T4 and our bodies are to take that and make useable T3.  In some of us, (Myself included), we can't make T4 turn into T3.  Why is this, well it can come from damage to the gland.  It happens, so I went onto Cytomel and it is pure T3.  Our thyroid makes several hormones T3, and T4 are the ones we are talking about.  When I went onto Cytomel it was a huge difference and I felt much better.  My TSH went to normal and has been good.  I have been a thyroid patient since 1987, so I have experience with it.

    There are a lot of meds on the market, and you can get (Brand names used for quick reference) Cytomel, Armour Natural Thyroid,thyrolar,  and Levo online.  I heard via this forum that NHS approves only Levo in their formulary, but you can get others with a prescription online.  Your doctor may be bound by NHS,  but you should not have to suffer.  Raising the Levo will not work, the body has to convert it. 

    So I say, ask your doctor for a prescription and buy another form of thyroid medicine as you need one that works ON YOU!!!  It is not that expensive to buy. Also make sure your minerals are in good order as Levo and other thyroid med's need good iron, calcium and magnesium levels.

    I hope this helps you.  Shelly

     

  • debra15034
    debra15034 lyndsey19103

    Posted

    I had my thyroid removed in August of 2014. I go for blood test every 6-8 weeks, my medication has not been regulated yet. One time I go, my readings are high, the next time low. 
  • debra15034
    debra15034 lyndsey19103

    Posted

    My blood test keep going up and down. This is very aggravating . I too do not feel great but trying to take one day at a time. 

    Taking my thyroid medicine at night has helped but now I just wish we could regulate the medicine. 

  • debra15034
    debra15034 lyndsey19103

    Posted

    I'm thinking about asking my doctor to switch me to another bran of medication, I'll try anything to feel better and get my dose age  right
    • barbara98940
      barbara98940 debra15034

      Posted

      Hang in there. It does get better. Swapping to another medication will only 'fix' the problem if the reason you feel so bad is because your body isn't changing T4 to T3. If you have Hashimoto's thyroid disease it is known that thyroid hormines fluctuate up and down before eventually settling down. One thing that helped me was that whenever I increased or decreased a dose I did so by a quarter of a 25mcg tablet at a time every 2-3 days until the right dose was achieved. This stopped my body over-reacting or under-reacting so noticeably to the change in medication. You don't mention T3 results. These are needed to enable you to see whether your body is converting T4 to T3 properly. If you live in UK it can be difficult to get your GP's blood test provider to do this test (even if your GP asks for it). If from the same blood test your T4 result is in range and your T3 result is below the range it indicates a T4 to T3 conversion problem. The reason you have to wait 6-8 after changing the dose is because it takes this long for the T4 in your blood to reflect the change in dose.
    • lyndsey19103
      lyndsey19103 barbara98940

      Posted

      I found this helpful also thank you I will find out my other result if possible tommorow from gp thank you x
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