Help please - eye pain on NDT :Update test results

[Julienew]

Please can I have advice on what to do now as l have eye pain. I have been trying NDT over past couple of months as had a lot of hypo symptoms and +ve for antibodies (more info in profile) Tests Feb 2017

TSH 2.25 0.27 - 4.20 mIU/L

T4 Total 93.9 64.5 - 142.0 nmol/L

Free T4 14.86 12 - 22 pmol/L

Free T3 4.62 3.1 - 6.8 pmol/L

Reverse T3* 16.0 10 - 24 ng/dL

Reverse T3 ratio 18.80 Normal >15 Ratio Borderline 12-15 Low <12

***Anti-Thyroidperoxidase abs H 44.9 <34 kIU/L

Anti-Thyroglobulin Abs 80.5 <115 kU/L

Started off low and very gradual increase to 1 grain in am and half in afternoon. I've had no improvement in symptoms apart from temperature reaching 36° instead of 35.something. No increase in pulse rate. Still have swollen feet and ankles.

I have noticed some eye pain - aching in socket around the eyes - mild intermittent for a couple of weeks but it was bad and constant yesterday morning (I'd already taken NDT) so I didn't take afternoon dose. Eye pain settled today, although not gone. No other eye symptoms. It must be the NDT. It has scared me.

Do I stop it completely? Is there anything else I can try? I have no idea what to do now 😕

[Julienew]

I've sent off blood for repeat tests today. Will post results when I get them.

[tinkerbell22 in reply to Julienew]

Hiya, I think that's the best idea, to do tests and see how your progress is.

I don't know if it's related but if I take something that is a bit much for me I get tension build up. My eye can be one of those places! Maybe it's a little too much for you, the dose you're on? So maybe reduce it but perhaps don't stop it as you have tests to check.

I'll try to catch up in PM. Sorry I've been quiet xx

[Julienew in reply to tinkerbell22]

Thank you. Was in a bit of a panic! That sounds like the sensible thing to do.

[tinkerbell22 in reply to Julienew]

Oh I meant to say... do you notice any small positive changes since starting NDT? Some people have said it can take ages to reach optimal dose and to feel better. I find I want to rush the treatment and feel better Now but then I take too much and set myself back. But I see positive little changes so I'm going to keep at it and Hope I gradually improve xx

[tinkerbell22]

Hope you're feeling better today! Just another thought. Some people vary the dose they take depending on things like stress levels, how they're feeling generally, women's cycle etc. I'm equally new to thyroid treatment and I take Metavive (a cheaper UK version of NDT) and I have tried this approach of varying the amount I take. I don't vary it drastically but a little adjustment depending on how I feel. I'm extremely sensitive and can only take a tiny bit at a time so I split the amount I take into tiny regular doses during daytime (but for me not too late in the day or it stops me sleeping). If I'm more tired than usual for example or more stressed or more to do, sometimes I take more than usual. But also sometimes I take less. It's about sensing how much my body can tolerate. Sometimes I get it a bit wrong but sometimes I get it right it's a balancing act, moment to moment and day to day.

So I would say the eye pain suggests that the current dose was a bit high for you. So taper down a bit but maybe try that dose again another day when you feel in a better place. Maybe you can tolerate extra every other day?

Hope this helps hun xx

[Julienew]

Thank you for advice! The eye pain seems to have settled for now. Still aware of it but it's just a slight intermittent ache. I've not noticed any changes, other than slight rise in body temperature, since starting the NDT. I take my temp twice a week just after waking, and my pulse too.

The Metavive sounds interesting - think I read about it ages ago but had forgotten. The NDT I take is from Thailand and was quite cheap. Would be easy to take small doses so I think its a good idea. At the moment I'm back on half a tablet early morning and another in afternoon. Also taking selenium and extra vitamin c as advised by others.

Something occurred to me last night. I had Glandular Fever in 1990 and one of the first thing that I noticed was painful eyes and eye movement. I'm wondering if it's something to do with that. I managed to find an ebook about reactivated Epstein Barr virus I bought from STTM site a month or so ago but hadn't yet read. I'll read it and see if anything there helps me find a cause and what to do.

This is like juggling with half a dozen balls!

[silverfox7]

How many grains are you now taking? When I started on NDT I got up to 3 grains and felt better. I couldn't raise any more. Endo told me to drop down to 1.75 but he was right. It's very easy to overshoot when it's new to you. So I'd hold the lower dose for a few days and see how you fell then.

It could also be a reaction to the fillers so to test that theory take an anti histamine one hour before your morning dose and see if that helps. If it does then that brand probably isn't for you.

Let us know how you get on.

[Julienew in reply to silverfox7]

Thanks for your reply.

I had just increased my dose (from half in am and half pm) up to 1 grain am and half in pm on Sunday. It was Tuesday that I woke with bad eye pain.

I did panic a bit and didn't take any more that day but I'm back on half and half again now. I'll stay on it for a while now.

I have some antihistamines so can easily check that.

I'm busy researching the Epstein Barr thing now.

Thanks for your help.

[Hidden]

Whenever I raise my dose of NDT I get eye/eye socket pain until my body adjusts to the new dose. My eyesight is better overall since being on NDT so I'm assuming the achiness is from the medication doing its job. When it happened initiallly, however, I did go to my eye doctor for a complete checkup - all tests were normal and that put my mind at ease.

[Julienew in reply to Hidden]

Thanks for your reply.

I was in a bit of a panic but have calmed down now. I'm back on previous dose and will stay on that for a while.

It helps to know that some others have experienced this and that it's not necessarily a big problem.

Many thanks.

[Julienew]

Just got test results! THYROID STIMULATING HORMONE *0.057 mIU/L 0.27 - 4.20 FREE THYROXINE 17.05 pmol/L 12.00 - 22.00 TOTAL THYROXINE(T4) 97.0 nmol/L 59.00 - 154.00 FREE T3 5.49 pmol/L 3.10 - 6.80 Thyroid Antibodies THYROGLOBULIN ANTIBODY 69.840 IU/mL 0.00 - 115.00 THYROID PEROXIDASE ANTIBODIES*38.13 IU/mL 0.00 - 34.00 HAEMATOLOGY Vitamins VITAMIN B12 *>1083 pmol/L 140.00 - 724.00 FOLATE (SERUM) 10.93 ug/L 2.91 - 50.00 BIOCHEMISTRY Inflammation Marker CRP - HIGH SENSITIVITY 1.4 mg/l 0.00 - 5.00 Iron Status FERRITIN 100.7 ug/L 13.00 - 150.00

TSH is v low now. Anti-Thyroidperoxidase abs down a bit now from H 44.9 <34 kIU/L

B12 still high but has been for ages. Also looking into that.

Any help and advice appreciated about the NDT.

Thanks.

[silverfox7]

Results looking good on the Thyroid front. On NDT TSH will be suppressed and FT4 can fall down to halfway. Your FT3 is looking good and so your next rise I would only do a quarter. Symptoms lag behind bloods so at the moment you may not be feeling as good as your results are looking but you are on the way!

[Julienew in reply to silverfox7]

Thank you!