What to do next?

[rookery]

I have a thyroid history. I had part of my thyroid removed in 1989 when I was 25 as it was covered in cysts, I had a goitre, it was interfering with airway, and I was sleeping all the time. By 2004 I had another goitre which is blood filled and apparently not a cause for concern.

Since 1994 I have been steadily putting on weight, have most of the hypothyroid symptoms and I've started to get ankle and wrist pains and I'm slowing down further.

I have had thyroid blood tests every year since 1989. I've asked to see my records so I can collect the values, but they are reluctant. My doctor is not very helpful, has provided me with my last 4 blood results for TSH which are between 2.7 and 3.5 miu/L. My Barnes Basal Temperature averages at 35.8. I have tried to talk through the data on ThyroidUK about the reference ranges and what is normal for me, and looking at the last 20 years of data to see if there is any deterioration pattern, but all she says is that my results are within the normal range, which for this hospital is 0.3-5.5. She agreed to do another blood test for TSH and I've forced her into ticking the boxes for T3 and T4 - she was reluctant and seemed to think they wouldn't get done because I am not on thyroid medication.

What am I going to do next? I'm so tired and noone listens, even with my clinical history. I'm worried now that my TSH will come back in the normal range but the labs won't perform the T3 and T4 tests. I can't afford private tests.

Any suggestions would be welcome.

[RedApple Administrator]

FT4 and FT3 testing is rarely done even for people on thyroid medication, regardless of what the GP requests. The labs seem to overrule GP requests. If TSH is outside the range, then the lab may do the FT4. Even if you could afford them, getting private tests probably won't be helpful to your situation because the NHS don't take notice of these tests.

The only suggestion I can offer is to ask for a referral to an endocrinologist. Maybe contact Thyroid UK about their list of sympathetic doctors in case there's an endo in your area that you could request a referral to.

[rookery in reply to RedApple]

Thanks RedApple.

[lynmynott Partner Thyroid UK]

Hi, Has your doctor done thyroid antibody testing? You could ask for these to check that you don't have autoimmune thyroid disease. If you do, then a trial of thyroxine can be given.

It might pay to take a man with you next time you visit your doc. Not PC I know, but it often works wonders with how a female patient is treated!

Send me an email - [e-mail] and I'll send you some other info.

[rookery in reply to lynmynott]

Hi Lyn,

Thanks for replying. Interestingly, I was intending to take my husband along next time - it goes against my principles in many ways because I should be able to explain and agree things myself, but this doctor needs a different tack. So, I'll let you know how that goes!

No, we haven't done thyroid antibody testing. Good point. I've got another blood test next week, and I'll try to get that included.

Thanks again.