I'm writing this post for my boss. She was diagnosed with Graves Disease and TED about a year ago and has been working with an endocrinologist to get her numbers under control. She just had bloodwork done and her doctor said her numbers are perfect, but she feels terrible. She's taking methimazole, 5mg twice weekly and that is all.
TSH 0.879 (0.360 - 3.740)
FT4 0.99 (0.73 - 1.84)
FT3 3.5 (1.8 - 4.2)
TRAb 7.34 (0.0 - 1.75)
Is it possible that her FT4 is too low and that is why she feels so unwell? Or is it her antibodies that are doing it?
Any help understanding these numbers would be most appreciated.
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KristinCC
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She's had (TPO) ab which was 168 (0 - 34) and Thyroglobulin Antibody was <1.0 (0 - 0.9) but that test was taken a year ago. Now her doctor only tests TRAb. Which is high.
And my mistake, her medication is called Methimazole.
Sorry, I put the wrong medication name in the post and I'm not sure how to go back and fix it. It's actually methimazole and she takes 5mg 2x week, (on Monday & Friday).
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We use Carbimazole in UK which converts Methimazole in the body so they work the same way. Reducing production of new hormone.
The 5mg 2x weekly is an extremely low dose. Usually a much higher dose started and as thyroid levels stabilise the dose is adjusted down to prevent hypothyroid levels.
Medics usually aim for this to be tritiated over 18 months. Many find longer Is required, so over 1 year this is fairly quick.
The FT4 is only at 8% through range, so extremely low. Some say if the FT3 is in top third of range low FT4 doesn’t affect them. Some are hugely affected by low FT4.
Low FT3 is an often reported feature of many who are hypothyroid & take replacement levo as conversion of FT4:FT3 can be affected.
Disproportionately high FT3 is far less common, but I was discussing this on another post today and I learned that dominant FT3 can be due to erratic release of hormone in the thyroid rather than conversion.
There can be an overlap with antibodies. TPO & TGab are most associated with hastimotos (autoimmune thyroiditis) can have phases of transient hyper ultimately under active. Trab & TSI are most associated with Graves. When results show weak elevations contrasting with high elevations it can be obvious which autoimmune disease is the cause of thyroid issue but with both sets of antibodies are high it is possible both conditions exist.
This can mean susceptibility to fluctuations & may explain the unusual results.
How often is she monitored? If the levels do not balance out soon the treatment regimen can be changed to block and replace. Higher doses of methimazole to totally block the thyroid and replacement levo to stabilise the levels.
Nutrients are often found to be poor with Graves, has folate,ferritin,b12 & vitamin D tested? Poor levels can contribute & compound symptoms. In range is not sufficient they need to be optimal.
Many say when thyroid levels are low this exacerbates TED. Does she have a separate specialist in charge of her eye treatment & monitoring.
Thank you so much for taking the time to reply! Graves seems so much harder to understand than hypothyroidism (which I have) or even hashimoto's.
Her doctor did start her on a larger dose of methimazole and has slowly over the course of about 9 months lowered her dose as her numbers have come back in to range. She had bloodwork done about two weeks ago and the nurse rang her and said the doctor thinks her numbers look perfect, continue with methimazole 2x weekly and come back in a year which seems ridiculous to me that he would want to go a whole year before seeing her again.
She asked her doctor to run those vitamin tests last October and everything looked normal. Unfortunately I don't have those results to post.
She has a separate doctor she is consulting with for TED. Last year she had 8 weekly steroid infusions to help with eye swelling. That helped for a couple of months, but her eyes then continued to worsen. She just started with Tepezza infusions.
It's been a rollercoaster for her and it's hard to watch her suffer. While we are in the US, she is British and tries to have a "stiff upper lip" as she calls it and not complain or feel like she's troubling anyone by speaking up about symptoms. Sometimes I have to threaten to call the doctor for her if she won't do it!
I would recommend you contact TEDct for more information on TED. They send useful information by post & have a great advice line (they helped me find a TED specialist ophthalmologist in my area). They also have a Facebook group & hold zoom meetings. Research shows it’s beneficial to start a selenium supplement in mild- moderate cases of TED, stop smoking (if applicable) & follow advice to optimise thyroid levels & key vitamins.
For dry eyes, I recommend preservative free drops like Hyloforte or HycoSan (use liberally) & for light sensitivity wear sunglasses. I have coloured lenses for night time driving, which really helps. I’ve not had double vision, but prism lenses can help with this.
Sorry, I hadn’t read KristinCC’s profile to know they are from the US. However, I noticed that there were several international guests who joined a recent TEDct zoom meeting (led by medics from Moorfield Eye Hospital), so it maybe still worth reaching out to TEDct on line.
Considering you are in the States can I suggest you dip into the Elaine Moore Graves Disease Foundation website where there is also forum, just like this UK platform, where you can post and receive replies from fellow Graves sufferers, who likely will be on the same time line and likely some in the same zip code to liaise with for support and advice.
I have Graves diagnosed in 2003/4 and was treated with an anti thyroid drug - but advised I would be treated with RAI the following year and became really unwell around 8 years later which was when I started my own research into Graves Disease.
Elaine Moore has Graves Disease and she too went through RAI and finding no help with her continued ill health started researching this poorly understood auto immune disease herself. Elaine now has several books published, with one especially on Graves Ophthalmology.
I found her first book challenging and very technical but the website is much easier to dip into and, I think, more for the benefit of Graves sufferers and friends and family.
Graves does seem to be a stress and anxiety driven AI disease and when the thyroid is under attack the symptoms can extended to psychological, mental, physical, plus emotional turmoil and the psychological impact of facial/ eye distortion can't be underestimated.
If Graves can be managed with AT drugs this has to be preferable to the drastic action of thyroid removal, as the reality is, Graves is an auto immune disease and the thyroid is the victim of an attack by the persons own immune system attacking the body.
Whist Graves antibodies, those TRabs are over range and positive, the disease is active and it's a bit of a waiting game, and the Graves will be treated in preference to the Hashimoto's as Graves is considered life threatening if not treated.
Her T3 and T4 levels are in the ranges but this doesn't necessarily mean " they are prefect " as it all about where the T3 and T4 are in the ranges and a small adjustment in medication can make a massive difference.
It's a balancing act to block the thyroid hormone production just enough for the person to be able to function, some medics totally block thyroid hormone production and add back in a measure of T4 so the patient can function within a more controlled parameter
Elaine has researched in depth the immune system component of this disease for which, currently, mainstream medics do not have any answer - other than removal of the gland.
The thyroid is a major gland and the controller of all bodily functions including one's mental. physical, emotional, psychological and spiritual well being and this includes regulating one's inner central heating system and one's metabolism.
I don't think Graves an " easy fix " - I read there can be a genetic predisposition and that the immune system can be triggered by a sudden shock to the system, like a car accident or a sudden unexpected death of a loved one.
When working on my own situation 10 years after RAI treatment - which I deeply regret, I realised that I was attacked a few months prior to my diagnosis in 2003/4.
In all honesty I knew nothing about Graves back when diagnosed and just grateful the AT drug allowed me to continue to work which in hindsight was probably the wrong thing to do as the person who attacked me was my assistant manager and I was needing to work alongside him, whilst conducting company disciplinary procedures.
Thank you so much for taking the time to reply! I'm always in awe of this forum and the willingness to share experiences and advice. It really is a tragedy that doctors don't understand more about thyroid disease. I'm sorry for what you've had to endure these years!
One good thing about my boss's doctor is that his goal is to keep her thyroid and have her medication free, though I'm not sure one can even be medication free?
I will definitely pass on the information about the website you suggested. And you made a really great point about stress, anxiety, the emotional toll of the disease. I'd never thought about the psychological impact of facial/eye distortion before. When I look at her, to me it's barely noticeable, but I guess, rather stupidly, it didn't occur to me how scary it must be for her. I'm glad you pointed that out.
I myself am hypothyroid and I know firsthand how unwell one can feel if medication is not dialed in properly. It's hard to watch someone you care about suffering.
You can always ask questions and get support here as well, but I just thought through Elaine's platform being Stateside there will be people much nearer on the same time line with more local knowledge and recommendations especially for a specialist for the TED.
Glad to read her doctor wants to work with her to keep the thyroid - excellent news, as after all, we are looking at an auto immune disease which isn't eradicated by loosing such a major gland and this drastic action, can sometimes, simply compound the problem.
Thank you for taking the time to reply 🙂! I know she did have those vitamin levels checked about a year ago when she was first diagnosed (thanks to this forum I had that knowledge to pass on to her to ask for testing!). Her tests came back in range, though I don't have access to those to know exactly what those numbers were.
For supplements, I believe she just takes a daily multivitamin with an extra separate vitamin d pill. She's tried to go gluten free, but it never lasts very long. She was tested for celiac and it came back negative. She has a family history of at least one sibling with celiac and another with sojrens. She and a couple of other siblings (there are 10 siblings) have charcot marie tooth and another with wegeners disease. I think it's just very overwhelming to think about having disease/diseases that are not very well understood.
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