Advice needed please

I have had an under active thyroid since I was 16, now 56. I suffer the symptoms of, utter complete tiredness, foggy mind, memory issues, migraine, sometimes hot sometimes cold, dry skin, overweight, hair loss, ezcema, asthma, IBS and headaches. At weekends, when not working I can sleep for 11 hours straight and I have to get at least 9 hours sleep on a working day. I have been on T4 since the beginning and T3 since about the age of 26. My doc, although sympathetic has stopped prescribing T3 because of the price. A private prescription is approximately £325 per month. Last week the consultant at the hospital agreed that I needed the T3 and is writing to my doctor about this but it will depend on whether or not the surgery can afford it. Is there anyone else in this position that could offer me some advice about what to do next, do I just have to live with it and consider myself fortunate that I haven't got something more serious wrong with me. I have a very healthy diet and walk everyday but I have been exhausted for 40 years.

5 Replies

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  • Welcome to the forum, Annie100zain,

    Read the BTA Statement below. T3 should not be withdrawn when it is benefitting the patient purely due to cost. Write to your CCG and practice manger appealing the decision and attach the BTA link. Copy your MP on the correspondence.

    british-thyroid-association...

    Send me a private message if you want sources where to buy T3 without a prescription until you sort things out with your GP practice.

    If you are optimally dosed you should not be feeling exhausted. Perhaps you would like to post your recent thyroid results and ranges and include results for ferritin, vitamin D, B12 and folate if tested and members will advise.

  • Hi administrator

    Thank you for the advice. After another appointment with the endo, she recommended that I go back on the T3. My doctor, however, although sympathetic said he can't write a prescription for a medicine he has been told not to . He is going to appeal for me. So maybe some hope there. My last tests results are as follows TSH 0.14 , FTA of 16, FT3 of 4.2

    These are the only results I have and not sure what they mean. The endo says it indicates over replacement with thyroxine. I am still on 175 mag per day.

    Please advise 😊

  • Annie100zain,

    FT4 16 is usually mid-range and FT3 4.2 is less than half way through range usually so I imagine it is your low TSH which makes your endo think you are over medicated. I don't agree because FT4 and FT3 are not likely to be over range. I do agree that adding T3 to Levothyroxine will improve your FT3 but it will also lower your TSH.

    Good luck with your appeal. If it is unsuccessful ask your endo and GP whether they will monitor you if you source your own T3.

  • Thank you very much 😁

  • l too, have had symptoms most of my life from similar age and been fobbed off by at least 5x GPs but got referral after having get stroppy. Lovely young lady consultant at Bournemouth, still doing tests. As said earlier Soton Labs dodge out of doing T3 test (without telling you) because of cost - dont yet know if I may need it. On ITV this week Trust Me I'm a Doc a patient said her NHS refused go on providing it, and has risked ordering on line. A doc ex Thyroid Assoc said its cheap to produce - looks like racket from Drug co's. Above lady cant do without. If l need it l will phone Swiss or French Embassy and try get name of proper Pharmacy to order from (as on line can be dodgy). lts taken me over 40 years to get referral -but went amazing Healer last 20 years but he was suddenly taken from us and l cant find a replacement. So now stuck with ordinary Medicine again. Good luck (NHS cost of T3 is £300 for 2 months)

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