Help with Blue Horizon results please - Thyroid UK

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Help with Blue Horizon results please

Chunipet profile image
5 Replies

I'm new here but not new to thyroid problems! I desperately need advice as my gp has requested me to make an appointment. I am presuming he's going to want me to stop taking T3. I'll try to be brief.

About 15 years ago I had to have a total thyroidectomy after my heart rate suddenly went to over 200 bpm. A scan revealed thyroid nodules (non-cancerous) and I was put on carbimozole but couldn't come off it without my heart racing. I was put on 100mcg levo daily. My weight climbed, I didn't feel well most of the time and I developed regular migraines. My gp allowed me to increase my levo over the years to 200mcg but I still felt unwell. Eventually (in 2013) I paid to see a private endo. He stated that levo was like caffeine and that you could get hooked on it and need a higher and higher dose! He did blood tests. Results on 200mcg were:

TSH <0.02 (0.35-6.00) FT4 27 (9.00-26) FT3 5.1 (2.8-7.1)

He said I was on too much Levo as my tsh was undetectable and wanted to reduce Levo to about 50mcg per day. By the time this was achieved I remember feeling that life was like wading through mud. My tsh was still undetectable. He reluctantly agreed to let me add 20mcg of T3 per day but I think he'd had enough of me by then and said my gp could supervise from then on. As my tsh was still undetectable after 6 weeks my gp suggested stopping the T3 and upping the Levo. I gradually went back up to 150mcg but the headaches and other symptoms all returned. Earlier this year I discovered this site and decided to do something to sort myself out. My gp agreed to me re-trying 20mcg T3 with 50mcg Levo. My blood tests, after 8 weeks, showed tsh as undetectable, and T3 at 3.99. I asked if I could try a gradual increase of T3 to 40mcg as the headaches had gone for the first time in months. He agreed. I was retested after another 12 weeks and my FT3 had gone to 5.9. My gp agreed to let me stay on this but said he was concerned at whether he would be overruled. I decided to pay for a Blue Horizon Thyroid+11 test and a gene test (I haven't had the results of the gene test yet). Fasting blood test results after no vitamin supplements for a week, no Levo for 24 hours, no T3 for 12 hours:

CRP 0.30 (<5) Ferritin 124.9 (20-150) Anti-Thyroidperoxidase 21.9 (<34) Anti Thyroglobulin 20 (<115) Vit D 99 B12 437 Serum Folate 34.85 (8.83-60.8)

TSH <0.005 (0.27-4.20) T4 Total 64.1 (64.5-142.0) FT4 8.59 (12-22) FT3 5.95 (3.1-6.8)

Blue Horizon advice was that if I was taking T3 instead of Levo, the tsh level would suggest I'm taking too much T3.

I really need some advice and am hoping someone can help. My gp has requested me to make an appointment to see him and I'm guessing he's going to want me to stop the T3.

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Chunipet
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5 Replies
greygoose profile image
greygoose

When you are taking any form of T3, the only number to look at, is the FT3. The TSH is irrelevant and meaningless. There is no way a TSH can 'suggest' that you are over-medicated. And your FT3 isn't even at the top of the range. So, you are not over-medicated. If your doctor wants to reduce it, resist with all your might, unless you yourself feel over-medicated. How you feel is even more important that the blood test results.

Chunipet profile image
Chunipet in reply togreygoose

Thank you. It's been so long since I've felt well that it's difficult to remember what it's like! The migraines, tiredness and weight gain have been very lowering but I've certainly been feeling stronger in recent months. My gp appointment is next week. He's been very supportive so, with what I've learnt on this site, I will see what I can achieve.

greygoose profile image
greygoose in reply toChunipet

You're welcome. :)

gabkad profile image
gabkad

After all this time, you can't just stop the T3 cold turkey. That would be a disaster.

silverfox7 profile image
silverfox7

First thing my. Ew endo said to me was TSH is suppressed (0.01) and I thought here we go again! But he surprised me and continues with -as it would be taking any form of T3 (on NDT) and in fact it could even be zero! I could have kissed him!!! As Greygoose has said it's only T3 that matters and you are in range and even have room for a small increase.

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