Help with results please x

[cherrybaby]

Can anybody help with my friends results; 3 years ago she had what she thought was a total thyroidectomy but has never been well with all the typical symptoms of depression, fatigue, skin & hair problems, brain fog, ringing in ears …. The list is endless. Then about a year ago a lump appeared where the thyroid was & they told her that some of the thyroid was left behind in error & these are the results of the latest test. Any help greatly appreciated as she is extremely unwell.

FREE T3 5.5 pmol/L Normal Range (3.1 – 6.8)

Free T4 8.3 pmol/L Normal Range (12-22)

TSH 0.04 mu/L Normal Range (0.3 – 4.2)

[Mumtoboy]

I will leave the blood tests for someone else to comment on as I'm new to all this. However I did have a total thyroidectomy myself 6 weeks ago. The first question that springs to mind is - has your friend had an ultrasound to confirm that the lump is actually thyroid tissue? It could also be scar tissue or a lymph gland. If I was her, I'd be asking for an ultrasound scan at the very least. It may be worth asking for her medical notes to find out if she did have a total thyroidectomy. I was told mine was total but there's a small chance some can grow back.

Hope someone can help you with the blood test results soon.

[Jackie]

Hi Some of the thyroid is always left. After the surgery often Hypo, the thyroid needs treating as if no OP, on how it is at the time.

Her T4 is much to low. She needs to be on Levo, if GP no help , a good endo.

Best wishes to you both ,

Jackie

I expect you know but to reply to some one click on "reply to this" under their post.

[Heloise]

I would think just looking at those numbers that she would be feeling good. Her T4 is low but it is just the storage portion, I guess her FT3 which is the working part could be higher but certainly being in the upper third is good. Rather puzzling.

Was the thyroidectomy due to uncontrolled hyperthyroidism? If so, I wonder if that nodule has something to do with this. I've read they can produce an ineffective form of thyroid.

[cherrybaby]

When she had the thyroid removed she was told it would be a 45 minute but it lasted almost 5 hours as they told her it was wrapped around her ears, not sure if that is possible!! She has not done well on T4 since the op so her endo started her on a combination of T3 & T4 - 10 mg of T3 twice per day & 100 gm T4 daily & there was some improvement but then the lump appeared & everything is getting worse again. She has had a scan & she tells me it is thyroid tissue but as she is in a constant state of confusion, brain fog & sleeping she may not have taken it all in. I'm not to sure why the thyroidectomy was done, she tells me she was told it had to be done so she had it done! I know a fair bit about hypothyroidism as I've fought for 24 years for my 24 yr old daughter who was born without a thyroid to have some semblance of a life, sadly still trying on that front! I have advised my friend on some issues but the new lump has thrown me so didn't want to say anything that may make things worse. However from your comments it may just be she needs an an increase in T3 or T4. Thanks for your comments they are very much appreciated xx

[Hashi_since_age9-1988]

Very strange results. If she is so ill could she be forgetting to take her tablets as she is actually on quite a high dose and her T3 and T4 levels don't reflect that. Also her TSH is very low considering she has a T4 below the normal range. Could she have secondary hypothyroidism caused by a pituitary problem? I hope they didn't remove her thyroid based solely on her TSH as if she has secondary hypothyroidism there may have been nothing wrong with her thyroid.

She needs to increase her thyroixine to get her T4 level to at least 14. But there is something funny going on as she is on a high dose. Its like her body is excreting/not using the thyroxine. You need to push to get lots more tests done - all the thyroid tests for a start including reverse T3. Maybe she has very high total T4?? high estrogen/TBG? Check adrenals?

[cherrybaby in reply to Hashi_since_age9-1988]

Thanks for the response; my first thoughts after looking at the results & checking via Google was a pituitary problem but didn't want to say anything to her in case I was wrong. Wish I lived close to her as I'd go with her when she sees GP and/or Endo but she is in London & I'm in Geordieland.

I will write a list & get her to take it & hopefully she can write the answers down.

What exactly does it mean if it is a pituitary problem?

Jeez my heart bleeds when I think of everything she's been through because of the dam thyroid, lost her job, lost her home & has been homeless with 2 children living in a one bed hostel for 18 months, on benefits, no car & the hospital is miles away so she cannot always afford the bus fare for her Endo appointment.

[Hashi_since_age9-1988 in reply to cherrybaby]

I guess it means that they have to ignore the TSH and look at T3 and T4 levels instead when determining how much thyroxine to give her. They may also want to check the levels of other things produced by the pituitary incase they are low too.

Perhaps it would be good if someone in the know was able to go with her as she may not be up to pushing for better treatment and asking the right questions. May not be possible though.

[cherrybaby]

Thanks everybody, I will cut & paste your answers to her & see if I can get any more info from her, I've done the list of questions for her & see if someone will go with her. Will keep you updated. x