Results help please

[Parksie7]

Hi

I am new to this community. I have been reading for a couple of days and I am wondering if any one can help me to identify what may be going on with my thyroid results?

Long story, shot version - multinodular goitre for around 15 years. Bloods always 'normal' except during pregnancy when I was hyper with one as possibly hypo with the second. Feel generally rubbish, I can tick so many of the hypo symptoms that I often wonder if I am just a hypochondriac! Key symptoms are high BP only during times when I feel really awful. - it can be fine for months, exhaustion, never feel refreshed after sleep, could sleep anytime, but spend half of the night awake or wake up often in the night, I am generally freezing, arm pain and pins and needles in my right arm, aching all over body - muscles and joints, heart rate can be vey slow but sometimes scarily fast and I get palpitations and ectopic beats.

Results -

march 2011

TSH 1.0 (0.3 - 6)

t4 16.3 (9 - 24)

Feb 2012

TSH 0.1

T4 15.1

May 2012

TSH 0.35

T4 16.1

Aug 2012

TSH 0.7

T4 12.8

All ranges as the first set of results.

I do see an endo who did the August results and did some Ab tests (TPO and TgAb, I think). He is happy with results and Abs are fine, but no numbers on these from him.

Any thoughts and insights as to what may be going on would be really appreciated as feeling like this is ruining my life. It makes me, my husband and kids miserable.

If you have got this far, thank you!

L x

Edited to add - hair loss! How could I have forgotten to add this? Comes out in handfuls, hairdresser/friend estimates around 30 - 40% volume lost in the past year/18 months.

[MaryMary]

Are you taking Levothyroxine or other medication and how much?

[Parksie7 in reply to MaryMary]

Hi

I have just realised that I should have 'replied to' your message and not simply added to the thread.

If you have any suggestions, I would really appreciate your comments

[Parksie7]

Hi

Sorry should have said, no meds at all. I am apparently completely normal, whatever that is! Should also have said that I have had fine needle biopsies of some of the nodules (too many to do all of them, but look fine on ultrasound) and these came back normal. I am waiting for a CT appointment to see if the goitre is substernal/retrosternal as it may be causing pressure internally and leading to my hand and arm issues, that I have had for over a year now...

I feel that the falling t4 is a bit odd, but to be honest, I was feeling awful when in all of the tests done last year.

Thanks for your help and any guidance/thoughts that you can give me.

L x

[MaryMary]

The nodules are beyond my knowledge, I'm afraid. However, I'm sure someone else can help you. My only ideas are:

Perhaps you personally need more T4 or

Your T3 is low or

You aren't converting the T4 properly at cell level due to toxins and/or lack of some vits and minerals or

You have low vit D or

You have low B12!

I know personally how detrimental these symptoms can have on family life, especailly when there is no physical sign or even a label in your case. Sending you hugs.

If you don't get many replies, it may be worth posting again seeing if others have had experience of the nodules?

Mary

[Parksie7 in reply to MaryMary]

Thanks, Mary. I have persuaded my GP to do my thyroid tests again. I won't get t3 on this run, but if the results are odd again I may be able to persuade her to try for the t3 . I do see an endo as well, but that isn't for a couple of months.

I will try to repost as well, thanks for the tip!

L x

[Parksie7]

Oops, should have said that my B12 was very low last year - long 'discussion' with GP on that one - should have that retested again this week also.

[Stourie in reply to Parksie7]

I hope that your long discussion with GP resulted in you getting B12 either in injection or methylcobalamin tabs.

Jo xx

[Parksie7 in reply to Stourie]

Oh yes, he agreed to injections when he could no longer respond to my points regarding the levels and various other results at the time. Shouldn't really need to work so hard especially as my results were actually below the reference range...

[Stourie in reply to Parksie7]

I'm glad for you. And you are right we shouldn't have to work so hard. I hope that the injections help you on your way forward. Best of luck

Jo xx