Completely stopped carbiamzole on 16th September after test results showing :
TSH 9.68 (0.30-4.20)
T4 6.1 (12-22)
T3 4.2 (3.1-6.8)
Finally I was seen by Endocronologist on the 28th of September.
My long awaited TRab question was answered.
Apparently I was tested in the emergency in June and my TRAb was 3.55, indicating I have Grave's.
I don't have the ranges. I am UK, London based. Do it all in Royal Free Hospital.
Is 3.55 a lot of TRab?
My TPO tested in July was 130 (0-34)
Tgab was normal.
Latest test done 17th of October
TSH 0.07 (0.30-4.20)
T4 13.6 (12-22)
T3 5.6 (3.1-6.8)
And now my endo calls me urging me to take 5mg carbimazole because of my TSH results and fear I will go hyper again. I did ask what is my TRab now? She was silent and then she said it takes 2 more days to get that result. Now again I am chasing her to find out before my next blood test beginning of December. Maybe I should invest in Medichecks test!?
As ever I appreciate your experiences, knowledge and advise
Written by
LilyBloom
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I’ve seen TRab with a <1 lab range so, check the range - but I think it’s likely a positive results.
Was it definitely re-requested? Because that is rarely arranged. Doctors don’t see a benefit in monitoring. Once a positive result it’s confirmation & should they drop to negative levels it’s a good sign remission may remain but the diagnosis remains.
The TSH is unreliable, it was quite high in September which is a sign it’s responsive to low levels but it’s has dropped.
The FT4 is low but your FT3 is higher in range. This sort of disproportionately high FT3 can be seen with Graves.
I think your thoughts are on right track - Have a further test. If FT4 & FT3 rise further recommence carbimazole. If similar or lower, continue to monitor.
How often is Dr testing? Usually 6 weekly a fair aim to compare levels. This is partly as dose alterations need time to settle. As you are monitoring for a rise you might want to test in between.
Thank you dear PurpleNails for your swift response. Yes on the phone she said it will take 2 more days for the new Trab result to come. I just emailed her asking for the results and the ranges. We are testing every 6 weeks, but my feeling is to do a price one in-between.
I really feel for you LilyBloom, as I was initially diagnosed as Graves, then Hashimotos. When I did (eventually) push for TRab it was negative for Graves, but endo still adamant that I was hyper. I’d definitely get antibody test ranges from your endo and a print out of the results. It is possible to have both Graves and Hashimotos, although rare.
I have TED with Hashimotos and that isn’t as common as TED with Graves. Do you have any eye symptoms at all? Any other symptoms that are bothering you?
Ah bless you Buddy195... and thank you. As you know, it's a ride or a rollercoaster. I am 51 now and entering menopause officially too. So asking about more symptoms, at the moment I am very emotional/ sensitive and going in a out of low moods. These are very hard at the moment. And yes my eyes for the past month are always a bit puffy, like when one gets up from sleep. A bit painful and grainy. No double vision, but I feel better wearing my varifocal glasses all the time now. I have the preservative free eyedrops and I am taking selenium 200mcg. Could you advise me more regarding eyes and TED? Best wishes
If you read the second half on my profile you see I have some eye issues. I “self treat” as getting help has been difficult.
You are already doing 2 things which is recommended.
Taking a selenium supplement is said the help protect eye. 200mcg for up to 6 months. Then reduce to 100mcg. Can be brought over the counter. Bear in mind selenium rich food can take you over the maximum requirement.
*Preservative* free eye drops & wipes. Rotating different brands seem to help. Liquid versions for daytime & gel versions at nighttime.
I recently been using ocufresh carbomer lubricating eye gel it a light gel so best of both worlds.
For when eyes are dry I use warm compresses (eg wheat bags, microwaveable gel masks). Very gentle massage toward lash line, can use fingertips or carefully with roller ball tool or gua sha facial stones. Warmth & message “unclogs” the blocked Meibomian Gland (tiny glands along lash line) and allows lipid oil layer to flow.
This protects eye and helps retains the water.
If swollen, inflamed & more painful, I switch to cold compresses.
If you like to moisturise near your eye area use water based clear gels not oil / cream. I did this as developed milia white spots round eye. I found the puffiness & swelling reduced when I switched.
Serious complications with vision or changes to eye appearance are very rare. Don’t Google and panic over worst case scenarios, they are always the most severe examples.
It can help to keep a photo record of eyes eg take a photo every 2 or 3 weeks. Tip which buddy recommended. I now do this & put them in separate folder on my phone with a cute kitty as a head photo, so I don’t see them.
Many report TED triggered or worsened when thyroid levels are low / high or fluctuating.
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