Hi - thanks to those who helped with my recent post. I had another Graves antibody test with Medichecks which is negative. The doctor’s comment suggests I might be in remission and check with gp. I have an appointment with gp in 3 weeks and have written to my endo specialist for his comments (my next appointment is October). All recent antibody tests are negative. So over the years - I have never had a positive antibody test. I have an enlartged multi-noduled goitre with no treatment for decades. When I went hyper, after a prolonged stressful time, I went on to Carbimazole. I have been on 2.5mgs and since the recent test results have reduced to 1.25mgs. After one week on the lower dose I am feeling better - without the endless hot flushing. I thought this was thyroid but perhaps simply just my body not needing the Carbimazole. I am extremely sensitive to meds/supplements. My recent results are below. Morning Cortisol now looking very happy! My question is....how can I know whether I am in remission or burnout? I am thinking of a follow-up blood test (without antibodies) in say 6-8 weeks to see what is happening clinically. I am intrigued that my TSH is registering after being ‘suppressed’ for decades!
I am now gluten-free (for about a year). Very restricted diet. And have re-evaluated my lifestyle to remove stress/triggers! (Not an easy task!)
Symptoms. I do have AF (atrial fibrillation episodes) from time to time and take a tiny amount of beta blocker. I have awful indigestion which I manage with herbs. I am very tired in the afternoons but I am a very early riser and busy! My sleep is now very good. I have tingling hands/feet at times - but this may be too much B12 as I was low. Vitamin D is good. My main concern is overwhelming sadness - but then what is the difference between grieving (death of my husband) and depression/low mood because of a wonky thyroid..... My weight is stable now as is hair loss and anxiety with upon rising panic attacks. Food sensitivites still remain and I am self-treating for Candida which I do periodically. I have felt unwell/dealt with various trauma for so many years - I am not sure what feeling normal is any more - and this may be as good as it gets for me!
Any thoughts? Or reference material I could read? I just would like some input before seeing my gp. Many thanks.
When my thyroid went hyper in 2012 I was told by Prof that nothing was going on other than an overactive thyroid and I have a letter which says the Graves antibody test was negative, and FSH and LH appropriate for my age. Previously I always came within normal range but with a suppressed TSH - so was monitored every six months. I have had various diagnosis depending who I saw - you have just gone over a bit......enlarged multi-noduled goitre with iosolated T3 toxicosis.....toxic thyroid. Dr P said I was just exhausted and knackered adrenals! Get those sorted and everything would come back under control. I have had a lot of things to deal with...mother’s illness/death; ditto with a dog; ditto with my husband; I needed to have my gallbladder removed and was extremely poorly with a very large gallstone and surgery had to be delayed.
So - for me - it is a surprise to look back over all my test results I have collected and now see a TSH registering within normal range, as well as bloods within range and a happy morning Cortisol. I have always had negative antibodies when I have had private testing - my gp will not do them.
I don’t know whether to ask for another thyroid scan re the nodules. I had one about 30 years’ ago when I was first diagnosed with a thyroid problem - which was at the same time as I started an early menopause at 37 and my doctors said - no impossible you are too young! So had to do my own research/testing on that!
Sometimes I am simply confused about it all. Dr P (who I no longer see) said my symptoms (I thought I had Hashi’s) were adrenal and often mimicked thyroids.
Obviously I will monitor with private testing as I do now but I would be interesting to know if others felt this was a possible remission - with likelihood of future flare-up - or burnout. I have been told - once the thyroid flips hyper then that’s it - it will never work normally again and I shouldmhave it nuked! That I know is not accurate - two people I do know had an overactive thyroid for a bit and then were ok again. However, as my TSH has always registered ‘suppressed’ within clinical testing I have stayed on the small dose of Carbimazole as I never ever want to have to go through the experience of a run-away thyroid again when I lost weight dramatically and panic attacks were horrendous as was the racing heart.
i do feel better these days but, as I say, I know in my lifetime I have felt healthy and well and happy!
Thanks for replying Greygoose - you are very kind to do so!
Well, if you never had raised Grave's antibodies, then I'm pretty sure you never had Grave's. And, to give you carbi simply on the basis of a low TSH, was simply wrong. Have your Frees never been extremely high?
I know some people can have Hashi's, without ever having high antibodies, but I don't think that's true of Grave's. So, there is a possibility you have Hashi's. I think an ultrasound at this point would confirm or refute it.
But, if you never had high Frees, just low TSH, did nobody ever suggest it might be your pituitary at fault?
Your results suggest you are verging on hypothyroid. FT4 is low in range and FT3 only average. Perhaps carbimazole needs reducing further.
Certainly retesting after 8-10 weeks on reduced carbimazole dose
Suggest you get folate and ferritin tested too. Cheapest option is Medichecks or Blue Horizon
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.
Do you supplement a good vitamin quality vitamin B complex as well as/or instead of B12. This improves all B vitamins including folate
If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 3-5 days before any blood tests, as biotin can falsely affect test results
All thyroid tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)
I would suspect Hashimoto's. Apparently 20% of Hashimoto's patients never have raised antibodies
Sorry - hard to write everything here without telling you my life story!
It was because the T3/4 were rsised with the suppressed TSH that Carbi was prescribed.
Since 2002 when I first started collecting the results - all within normal range but TSH suppressed - so no medication - just review every six months.
April 2012 I just started having severe panic attacks on rising and lost weight very quickly. By September T3/T4 was within within range again and Carbi slowly reduced to 2.5mgs every other day. when I saws the Prof in nov 2013 he said he was happy with the numbers and continue on low dose. He was for RAI/surgery. I wanted to try complementary therapies in line with Elaine Moore and the American Graves guy whose name escapes me!
February 2014 my husband became ill suddenly and the T4/T3 spiked again.
It was in 2014 that I started to have the AF episodes. So cardiologist and endo wanted me to stay on tiny doses.
I have followed the thyroid pharmacist and that is why I have always thought I was Hashi and went gluten-free and made other changes to diet.
My Vitamin D was fine and B12 now too high (well over reference range).
Next step is to have another test and see what is happening and see what if any help from gp. In the past she has said she cannot treat/advise because I am under a specialist.
Normally I would say I am low in range on T4 and in middle with T3. But when I have been outside of range the T4 can be low outside range!
Who knows! I know I’m not as well as I think I would like to be! I have just been doing some painting outside and feel awful having done so. Food/environmental sensitivites are a real nightmare. Have tried working with a herbalist but my body just didn’t like the supplements. Dr P tried to get me to take adrenal support - which made me so hyper!
The B complex just gave me the jitters - so have open the capsule and take a tiny bit.
So - life can be a bit of a challenge at times!
Will follow the suggestions and have another lot of tests and probably with Medichecks as they have done the last several and I can better see changes.
Thanks again for replying - always much appreciated.
Yes I found initial doses of B complex made me feel wired, insomnia and odd. I started on Jarrow B right - quite a high dose one. But symptoms faded after 2-3 days
I now prefer Igennus Super B complex. Full dose is 2 small tablets per day. I only take one. You could half a single tablet to start with
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