New results, scared doctor will dismiss me

[catpotter44]

Hi everyone,

So, my levothyroxine was put up to 88mcg at the end of November. I tested in March and results were:

TSH 1.270 µUI/mL 0.380 - 5.330

T4 (free) 1.16 ng/dL 0.54 - 1.24

(88% through range)

T3 (free) 3.79 pg/mL 2.50 - 3.90

(92% through range)

I always test before 9am, fasted, no meds.

I still wasn't feeling great at that time, but no change was made. March-April I worked on gut health, started taking Betaine and pepsin for low stomach acid and the change was amazing, I was feeling great.

At the start of May I had a virus and everything came tumbling down. All my symptoms are back, tiredness, muscle and joint aches, bloating, puffy face, sleep issues etc.

So I got a blood test last week, feeling hopeful it would be time for another increase. Here are my results:

TSH 1.070 µUI/mL 0.380 - 5.330

T4 (free) 0.97 ng/dL 0.54 - 1.24

(58% through range)

T3 (free) 3.31 pg/mL 2.50 - 3.90

(58% through range)

ESR *48 mm/h 5 - 25

I'm so disappointed. I've been feeling rubbish and was hoping this blood test would help make a difference, but looking at these results I don't know if the doctor will do much. I have an appointment Friday.

In addition to this they tested antibodies, which were negative again. I had them positive once on a private test, but negative twice now on tests the doctor has ordered.

I've been taking vitamin D since a low test late last year. In March it had gone up to 33.5 ng/mL but they didn't test this time.

Vitamina B12 *608 pg/mL 116 - 513 ( I don't know why this range is so ridiculously low!)

Ácido fólico 12.3 ng/mL 3.1 - 19.9

(In November B12 was 1076 as I had been taking sublingual drops and folate 8.8. After that test I changed to Iggenus B-complex of which I usually take 1 a day. I did have a break of maybe a month at one point this year. I stopped taking it for a week before my blood test).

So, really my question is, why would my tsh have dropped further since March, even though my T4 and T3 have also dropped? And otherwise any advice or kind words? I'm really worried that the doctor is going to do nothing but dismiss me on Friday and I don't know what to do!

[pennyannie]

Hello Catpotter :

You have put a lot of work into getting where you were - and well done you :

I think this virus you had in May will have scuppered things and it's too early to test again, and you need to give your body time to recover.

In times of ill heath the thyroid automatically down regulates itself and everything ' slows ' down - while the body concentrates on building itself back and fighting infection.

Looking at your March readings - taking your ' maths ' - and taking T4 only medication :

your T3 is tracking @ 92% with your T4 result @ 88% - - and this inverse -

as generally speaking we feel best with a T4 in the top quadrant at around 80% with the T3 tracking just behind at around 60/70 % - so this shows you struggling and I think needing your T4 titrating down a little.

No thyroid hormone replacement works well until the core strength vitamins and minerals are up and maintained at optimal -

and on UK ranges - I now aim for a ferritin at around 100 - folate around 20 - active B12 125 ( serum B12 500 ++ ) and vitamin D at around 125 and find I need to maintain supplementation throughout the year irrespective of the weather.

Spanish ranges are different to UK ranges and think you should aim for around a good 50% through any vitamin and mineral range.

Glad the Betaine with pepsin has helped with digestion and hopefully the absorption of nutrients :

Antibodies come and go - the fact you had positive and over range once is enough - was it a TPO reading - will the doctor not acknowledge this private test showing these facts ?

Your ESR rate has been highlighted and believe this shows levels of inflammation which may be because of your virus last month - but am now a little out of my depth :

[catpotter44 in reply to pennyannie]

Hi Pennyannie, thanks for your kind words and advice.

Yes, I've been working hard, which makes it all the more frustrating. Sometimes it feels like a losing battle if I'm not on the right dose yet. The virus I had in May didn't seem very serious in and of itself. It was at the start of May, so it was about a month later that I tested. I hoped that was long enough to have recovered and have a good blood test. Unfortunately I am working against time as I am going on a big trip at the end of July/August, so had hoped to get things a little back on track for that.

Yes, the numbers back in March were a bit strange and it was suggested in reply to a previous post of mine that the T3 might be higher due to a flare. The numbers in my latest look a bit more normal in term of T4/T3, but the strange thing is that TSH has gone down at the same time as T4 and T3. Not sure about titrating T4 down though? Given my last tests are lower, and that my dose is already somewhat low.

The antibody I tested positive for was Thyroglobulin antibody. And no, the doctor wouldn't acknowledge that test, not entirely. She seemed to take note of it, but said that antibodies fluctuated and that it didn't mean anything and that she would wait and see what my new results for. So, ironically I was hoping for bad test results to get some kind of action from her.

And the ESR was similarly elevated back in Nov. I think it's more likely something else going on than from the virus. Maybe autoimmune activity, even though my antibodies are now showing negative. Don't know.

[pennyannie in reply to catpotter44]

Well - yes- your inverse T3/T4 blood test could have been the result of a AI flare which could also explain the ESR results last November.

Antibodies will wax and wane - all you can try and do is manage the symptoms tolerated.

I read that some people realising they are having a ' flare ' stop / reduce the thyroid hormone replacement for a few days so to try and offset the worst of the symptoms being experienced - though longer term with continued attacks from the immune system the thyroid becomes further disabled with the patient needing more, not less, thyroid hormone replacement.

A big trip something nice to look forward to - but guessing stress is building which isn't doing you any favours :

I don't know if you were given this link previously - it might be useful to you-

thyroidpharmacist.com

[catpotter44 in reply to pennyannie]

Thanks for the reply. I really appreciate it. I have done lots of reading over the last few years, including the thyroidpharmacist, so sometimes I feel like I've got a fairly good understanding of what's going on. These latest have me stumped though. I guess it's as always a test of patience. I was hoping to get better for the trip...exactly, both exciting and worrying...mainly about what my health is going to be like!

I'm always reading about optimal doses and it seems 88mcg is a low dose. But with my latest results I don't think my doctor will do anything, and I'm not sure whether or not it's time yet anyway. 58% through the range is pretty low though.

[pennyannie in reply to catpotter44]

Yes - we generally feel best when the T4 is up in the top quadrant of its range as this should in theory convert to a good level of T3 tracking just behind at around 60/70% through its range.

Thyroid hormones can take time to respond and re-balance after any down regulation or flare - which again is a cause of anxiety as the symptoms generally immediately recognised and it can become something of a vicious circle.