Reading other stories

[Juliet2020]

I guess we’ve been lucky reading here all of your other stories. Living in South West of England. It’s procedure to have your blood tested by a nurse in surgery once a year to check your TSH levels. I’ve been on Levothyroxine since 2011 at same rate 100mg. Every year I go to doctors and get a blood test. We get a free prescription card as we have Thyroid issues. I’m 40 years old and I never knew that what I have is life threatening. I feel for you all that don’t get the treatment you need. I remember being undiagnosed, it was so sluggish in those days but I was also a first time mum to a young baby too.

[Lora7again]

Have you read your blood results? Also I am supposed to have my thyroid function blood test done every 6 months which I think is inadequate so I pay for a private test every 3 months. Of course this hasn't happened since the lockdown. I need a more detailed test than just the standard TSH which done by the NHS Labs because that is a pituitary gland hormone not a thyroid hormone and it is the T4 and T3 that counts.

[Juliet2020 in reply to Lora7again]

I will be speaking to doctors today about other things. It’s annoying I have problems that need looking at and doctors won’t have you in surgery because of the virus. I will ask about my thyroid last results

[Lora7again in reply to Juliet2020]

I have patients access and can log in to read my records and blood results. This is much better than some receptionists telling me over the phone that my results are normal when she doesn't have a clue about thyroid disease.

[Lora7again]

Just to add do you feel well on 100mcg? because that is a low dose and my Dad is on that because he is classed as elderly at 78.

[Juliet2020 in reply to Lora7again]

I just suffer with occasional anxiety caused by under active thyroid otherwise I’m well and I do gardening and walking and teaching everyday

[SlowDragon Administrator in reply to Juliet2020]

It’s also important to regularly retest vitamin D, folate, ferritin and B12 too

These are frequently too low when we have hypothyroidism, especially when caused by autoimmune thyroid disease (most common reason for primary hypothyroidism)

Obviously just testing TSH is completely inadequate, but that’s typically all GP will test. Ft4 and Ft3 should always be tested too

Getting thyroid testing early morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test gives most reliable results

[Lora7again in reply to Juliet2020]

You could feel like that because your levels are not right for you. Can you find out what your TSH is? Usually people feel better if their TSH is 1 or lower and their T4 and T3 are in the upper third of the range. Also your vitamin levels need to be optimal for the Levothyroxine to work.

When I first started to feel unwell about 12 years ago I went to my GP who said everything was normal including my thyroid. He said it was probably the menopause and I had 3 hyerstercopies which were normal and was given the Mirena coil and hormone patches which made me worse. I even paid £150 to see a dermotologist who said I had female pattern balding. I blindly believed what my GP told me and then went undiagnosed for over 2 years. In the end I looked dreadful my head was balding and some of my nails had dropped off. I was so thin my family and friends thought I had cancer. I was an extreme case but I have heard of similar ones to mine both here and in the US. If I hadn't joined Elaine Moore's site and showed her that my TSH was 0.002 and suppressed goodness knows where I would have ended up. Now I always insist on seeing any blood results that my GP does because I was told I was "normal" before when I actually had hyperthyroid. I think a lot of GPs don't know a lot about thyroid disease and just follow NHS guidelines without looking at symptoms etc.

Once you get your results post them on here so members can help and advise you.