Help with results

[beccacbn]

I had my left half of thyroid removed in October and was put on 50mg of levo which they increased to 75mg.

I had a blood test done at end of Jan and TSH was 3.25 (0.27 - 4.2).

The consultant said that as I was in range no further action was needed even though I explained my symptoms:

Feeling like i am being choked all the time - like someone is pulling really tightly on my clothes around my throat from.behind.

Feeling of being totally overwhelmed

Crying for no reason

Not able to concentrate or perform tasks that involved concentration

Tiredness

Internal shivering especially in the morning.

I went to the Dr to talk about my son a couple of weeks ago and he asked after my thyroid. When I told him my symptoms he arranged for another blood test.

Results came in today and are:

TSH 1.98 (0.30 - 4.20)

T4 20 (12 - 22)

The Dr says my thyroid is fine but my white blood cell count is low at 3.34 (3.50 - 11). So has asked for another blood test in a month.

However I am still having these same symptoms and just don't know what to do. My instincts are saying I'm not medicated enough but 2 Drs are telling me that I am.

Can someone please advise me what they think I should do, if anything.

[greygoose]

You're probably not converting that T4 to T3. But to know about that, you would need your FT3 tested at the same time as your FT3 - shame on your endo for not doing full thyroid tests! A TSH on its own tells you very little, but even so, at over 3, your TSH was too high and was telling him you needed an increase in your levo. He obviously doesn't know enough about thyroid to know that!

So, you would have to do a private test to find out how you're converting. Where both those tests done at the same time of day? The best time to have the blood draw is early in the morning - before 9 o'clock - and after fasting over-night. Leave a 24 hour gap between your last dose of levo and the blood draw. Is that how you did your tests?

[beccacbn in reply to greygoose]

Thanks for your reply.

I had a Blue Horizon test done back in January - the same time that they increased my levo from 50mg to 75mg.

Then my TSH was 4.92 (0.27 - 4.20)

T4 Total 87.7 (66 - 181)

Free T4 15.90 (12 - 22)

Free t3 4.18 (3.1 - 6.8)

my Anti thyroidperoxidase was <9 (<34)

Anti thyroidglobulin was H145 (<115)

I have all my blood tests done in the morning on an empty stomach having taken levo 24 hours before. However, the latest blood test which showed my TSH at 1.98 was done around 9.30am by the time they had opened the shutters!!

So what do you think the best thing to do is? Do I go and find another endo (privately) and have more tests done.

Since this morning, I am feeling not only strangled but like I have something stuck in my throat as well as the other symptoms!

[greygoose in reply to beccacbn]

According to those tests, you convert quite well. But, you are under-medicated with a TSH at nearly two - possibly would have been two if the blood had been drawn earlier. And, it sounds as if your thyroid is inflammed.

It's not clear with those results if you have Hashi's. Your TPOab was quite low, so not suspicious. But your TgAB were over-range - although not a lot over-range. And, TgAB can be raised for other reasons. The thing with Hashi's is that you can't prove you don't have it, only that you do. But, with an inflammed thyroid it does look rather likely that you do. Not that that would affect your treatment, of course.

For the endo, unless you know a really good one, there's possibly not much point in throwing good money after bad. Would your GP not be open to increasing your levo prescription for you?

[Greekchick]

Dear beccacbn, I feel for you. My blood work was borderline normal for years despite being my hyperthyroid and finally I developed full blown symptoms of Graves and a goiter that was large but blew up overnight and was just removed 3 weeks ago. Greygoose is spot on - T3 test needed. You may need to find a doctor who takes a holistic approach to your clinical presentation of symptoms and not just look at the blood work. I’m sure this is easier said than done. In this age of evidence based medicine, sometimes the most obvious evidence - what is right in front of the doctor- is overlooked. I wish you the very best of luck and hope you feel better soon.

[beccacbn in reply to Greekchick]

So nice to hear from you. How are you feeling having had the goiter removed? Did they take part of the thyroid with it?

Are you under the care of a good endocrinolgist now? I hope so, and hope that you are on the road to recovery.

I had a very similar experience to you - looking back, I think I had some signs of Hypothyroidism but just figured it was the symptom of having 3 young children! I then had a 6cm lump that, like you, blew up overnight.

I have now seen 3 private endocrinologists, who, whilst were good at removing part of the thyroid don't seem to have the aftercare skills!!

[Greekchick in reply to beccacbn]

Dear beccacbn,

Thanks for writing! I should clarify something because I did and do have great doctors. Part of it was I did not want RAI and so I waited too long. I should have asked about surgery as an option earlier and it should have been offered earlier too. The other part was that I had so many health issues that it was hard to tell what was the thyroid and what was other stuff. The Canadian endos don’t like to do surgery, partly because of cost to the system. However, when it blew up I was in the OR very quickly - did not wait. But generally, the knee jerk action here is RAI.

My TT went very well. I really had a skilled surgeon and I had no vocal cord or parathyroid damage, amazing since I had a grapefruit and orange on either side of my neck .

Recovery has not been easy, but I am making progress and every day is better . There are some setbacks but bloods, my incision, etc. are all going well. The crying spells have subsided a bit and the hives are down to one or two a day.

I had to find my own support system. If I knew before what I know now, I would have lined up my allergist, and a therapist to deal with the surgery aftershock before the event. I will now advise everybody to do those things in advance and not wait for the system to provide them . It doesn’t seem to be set up that way right now.

So now , I do have an appt with both of these folks and I will be getting the help I need. I am lucky that my husband is great emotional support so I consider myself a very blessed person.

How are things going for you? I am so appreciative that you checked in on me! Sending you good thoughts and lots of energy for continued progress as we make this journey.