I was finally diagnosed in May this year with under active thyroid, with a TSH level of 89. I'm currently on 6 -8 weekly blood tests and am currently on 100mg of Levothroxine. The doctor 'forgot' to refer me to endrocronology in May, and has to do a new referal with a 4/5 month waiting list. Has anyone got any advice that I can do to help myself in the meantime. I'm struggling with everything to be honest, and the gp can't seem to answer any of my questions!! Hair loss, still struggling with weight loss, pick up every bug going, tiredness, lack of motivation... Basically, I need help with everything!!

Thank you :-)

7 Replies

  • It would help if you could post the results of the blood tests. If you don't have them just ask the surgery, they usually provide them with no problem but if they are difficult you can get a bit assertive and say you are entitled. It sounds like you might just need an increase in levothyroxine. Although a TSH of 89 indicates you were probably quite ill it does seem that patients who initailly have these high TSH levels tend to do well once they are adequately medicated. It does take many months to recover but it sounds like your doctor is progressing too slowly. If your doctor forgot to refer you (by accident or otherwise) I think you could put it to them that they should point this out to the endocrinologist, just in case a vacancy should crop up due to a cancellation ;-).

  • Thanks. I had bloods taken on Monday, so should be able to get the results next week. When the TSH was 89, I know the T4 level was very low - although can't remember the exact figure. I felt very poorly to be honest, and the doctor suggested I went to see a dietician & pyschologist to look at my relationship with food, and sent me to see a gynecologist to look at early menopause (1 am 41) it was the gynecologist that told me I had under active thyroid, and was baffled why I'd been sent to him!!

    My mum has under active thyroid, I had it 5 years earlier during/ after the birth of my son, and I'd given up smoking - but the doctor didn't seem that interested in those facts!!

  • D3bbi3,

    When you post your thyroid blood results include the lab ref ranges (the figures in brackets after your results) and say what dose and medication you are taking and members will advise whether you are optimally medicated.

    Ask your GP to test ferritin, vitamin D, B12 and folate as hypothyroid patients are often deficient/low and these deficiencies can cause musculoskeletal pain, fatigue and low mood similar to hypothyroid symptoms. Post your results with the lab ref ranges in a new question and members will advise whether supplementation is required.

    Take your Levothyroxine with a full glass of water on an empty stomach one hour before or two hours after food and drink, two hours away from other medication and supplements and four hours away from calcium, iron and oestrogen.

  • Thank you. I'll ask for the lab ref ranges next week then. Never knew any of the other stuff, so I'll get onto that as well :-)

  • When you have a blood test for the thyroid gland, don't take medication beforehand, take it afterwards as it can skew the test. Also have the earliest possible as TSH is highest then.

    If we want to recover, we need a good doctor but most don't understand except to tell us how we feel by looking at the computer print-out and not looking/listening to the patient.

  • Thanks. I've learnt loads already on here that I didn't know. I think I'll start taking my tablet before bed time, as I normally take it in the morning, with my breakfast & multi vitamins!! And now I know it's all wrong!!! ;-)

  • Also ask if you can have all of your blood results from when you were diagnosed and everyone can see what is happening with you

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