Thyroid scan

[DraigGoch]

Hi everyone - I have been having the physical symptoms of Hashis for years and confirmed it by a private blood test which showed high levels of antibodies. My doctor would do nothing about it and I self treated. When I moved house I had to change doctors. After a bout of lower lung infection which refused to clear up and left me with a persisent cough a doctor at the new surgery decided I had a hyperthyroid problem ( he was not interested in the antibodies, either) and referred me to the endocrinology dept. Because of this I stopped self- treatment so that any tests would not be skewed. The first endo did no blood tests, no physical exam, but told me I had Graves disease and would have to have my thyroid destroyed. He was not interested in the antibodies, either, he said they meant nothing. After receiving that consultant's letter another doctor at the surgery telephoned to say there was nothing wrong with my thyroid but that I would be checked in 2 months. So, in 2 months I had a blood test done, saw a different consultant who asked all the right questions, did a physical examination of my thyroid, said he thought my thyroid was growing backwards and pressing on my trachea, mentioned nodules and biopsies, and confirmed I had auto immune thyroiditis. He ordered a scan and extensive blood tests - fbc and all thyroid. That was on Feb 25th, and then Covid19 happened. Yet another consultant gave me a phone consultation, said he'd seen my TSH was 4.8 and there was no problem, he didn't bother looking at any other results. I then played the poor little old lady card (I'm 74) and said it would give me peace of mind if I could still have the scan. He okayed that. However, the dept secretary said I should ring the x-ray dept to check I was on the list. The x-ray dept said I am on the list but that it requires a doctor to do the scan and they had no idea when I would have it done. I am feeling pretty poorly really, so need a scan to see what is going on.

My two questions are, why is a doctor needed to do the scan? And is it possible to have these particular scans done privately?

Thank you for reading this.

[PurpleNails Administrator]

A qualified doctor would have the right expertise to perform a scan. When I went for one they detected a nodule so did a fine needle biopsy at the same appointment. So a team of doctors and trainees were involved.

I had an NHS scans (ultrasound) but I have seen post about private scans. Im unsure of the expense. Start new post with title specifically asking for recommendations for private thyroid scan in your region and that will start you off.

The purpose of a scan is to look at the health & size of the thyroid and detect any nodules, which are very common, even in those without thyroid disfunction. A ultrasound scan can’t conclusively diagnose any condition or show thyroid status. For this you need a new blood test to assess your current thyroid function. Blood tests are still being at GP surgery’s, clinics. I make an hospital appointment to have my blood test as it takes an expert to test me. if your last test was February that it too long ago especially if you have held off your usually treatment.

When you were self treating what did you use and what dose? Did you have you TSH, FT4 and FT3 monitored whilst taking your own treatment.

As the doctors have said you had Graves and then Autoimmune Thyroiditis you should request they confirm with antibody testing.

Thyroid Stimulating Immunoglobulin (TSI) or TSH receptor antibodies (TRAb) are high in Graves.

Thyroid Peroxidase (TPO) and Thyroglobulin (Tg) are high in autoimmune thyroiditis.

[DraigGoch in reply to PurpleNails]

Thank you so much for this PurpleNails. Needing a doctor to do the scan makes sense now.

The private blood test that led me to self treat when the doctor was not interested showed high levels of TPO and Tg. When I was self treating I worked up to 2 tablets NDT (Thyroid-S) daily, along with magnesium, selenium, zinc, VitsD3 and K2 supplements, potassium from food. But I did not monitor with blood tests, just went by how I felt. And I felt so much better.

Also, I have been self-injecting weekly B12 for several years along with oral supplements of supporting B vits and folate rather than folic acid (because of MTHFR mutations).

[PurpleNails Administrator in reply to DraigGoch]

I’ve never been hypo or self treated but I suspect its possible that when you were self treating your FT4 & FT3 required to make you feel well, were at levels which suppressed or lowered the TSH. Your thyroid didn’t need stimulating to make thyroid hormones, you were replacing it with medication. The TSH can trail behind for a long time. When your doctor saw a low TSH they incorrectly concluded you had Graves.

Doctors don’t know how to control/treat antibodies, they are usually only tested once to confirm diagnosis are then do not repeat them.

Have you continued supplements but stopped NDT for all this time? Your TSH was too high when it was last tested in February, months on its likely to be high enough by even NSH standards to merit medication. Are you able to contact your GP or hospital endo & explain how unwell you are, how long it’s been since your last test and ask to arrange a new blood test?

Have you seen the advice on this forum about the ideal conditions for blood test and options for private blood tests? Biotin can sometimes skew results, need to leave for 7 days. Make a repeat test your next step.

Hope you get the guidance you need on the private scan route on your other post.

[DraigGoch in reply to PurpleNails]

Thank you so much again, PurpleNails. I'll look into all this and arrange for a blood test.

[SlowDragon Administrator]

I have details on private scan options in London

Cost £150 approx

Send me a private message if this is any use to you

[DraigGoch in reply to SlowDragon]

Many thanks, SlowDragon. I should have specified that I am in Ceredigion, in the west of Wales. Getting to London would be very difficult for me, unfortunately.

I shall do as PurpleNails suggested and put up a more specific post.