I was diagnosed with Graves disease last year after testing positive for TRAB twice or thrive and having an uptake scan which also highlighted hyperthyroidism and graves. More recently I have been on 2.5mg methimazole and for a few months things were stable, however after infections in recent months and a later a surgery, my symptoms seem to be spiking very aggressively. Is it possible that few infections have flared up my graves or thyroid again?
Most recently Had some sudden episodes of AFIB and increased weakness, muscle twitching and muscle loss, increased tremor, increased body temperature, thinning of skin etc over the past few weeks along with a bunch of neurological issues such as increased and had to rush to ER, they did my thyroid labs and ER doc was a cardiologist and said that AFIB is due to my FT4. I told him that my endocrinologist said that numbers are normal but he said that they are not based on their labs and cut-off values. He said that they have credible data pointing towards AFIB in thyroid patients with high normal ft4. Also visited the neurologist and he sent me back saying it's looking like thyroid disturbance also. Neurologist also mentioned that my vision disturbances can be explained by TED and not any neurological conditions because of normal MRI and normal visual neurological tests. (I have had minor TED since diagnosis)
Here are my new results from ER(I am on methimazole 2.5 at the moment):
Trab was not tested at ER, last result was 1.1 and TRAB 6-8 months ago was close to 3 with normal range being 0-1.
I have been on 2.5mg MM for some time now. Does this warrant changing the dosage to 3.5mg or 5mg because my ft4 levels have never gone down on 2.5, only stable or up? The endocrinologist is not agreeing on add back therapy or anything similar, so that's not an option.
Is this ft4 really on the higher side? Cardiologist told me to find my optimal range and keep ft4 mid range at 1.1 or 1.2 range and tsh closer to 1.2-1.5 with FT3 upper mid range, is it a good advice? I have past history of some minor heart complications and also family history, so I am quite stressed when anything like this happens.
My old labs were:
FT4: 1.34, I don't remember exactly but it was around that range
TSH: 1.25
FT3: 3.1pg/ml
Vitamin Panel, Iron panel, Electrolytes, ana Panels and more are all in good shape, I have been focusing on teaching optimal levels for everything through research.
Thank you
Written by
Wanderingweasle
To view profiles and participate in discussions please or .
is this latest definitely an fT4 ( free T4) , or is it a TT4 (total T4 )result ?
if it's TT4 then it would be useful to get an fT4 result to get a fuller picture.
Your fT3 is not high at all , however your symptoms do definitely fit with overmedication, and high end T4 is not a great idea if you can avoid it., for several reasons ie. it does carry some increased statistical risks.
So for both of those reasons , i'd say trying a slightly higher dose of antithyroid drug may be worthwhile. to see if lower T4 improves these symptoms.
(high end T4 can also reduce conversion of T4 to T3... so if high T4 is reduced the amount of T3 can potentially go up a bit ..... but whether this still applies when someone is also taking antithyroid drugs i don't know)
Thank you, It is Free T4, They put it in my report as FT4 instead of Free T4.
So as you mentioned, it is possible that the high ft4 is contributing to my symptoms at the moment? Endo was a bit relaxed, i am likely going to look for another endo as my cardiologist said that my levels need to be better managed considering cardiovascular risk
logically , high T4 with lowish T3 'shouldn't' be causing symptoms , because T4 is not what activates the thyroid hormone receptors inside cells , it is T3 that does that ... and your T3 is low in range .
However , the system is very complex .. fT4 and fT3 tests can only see what the level in the blood is ... not the level in cells .. and different cells in diff. part of the body have their own complex mechanisms for converting and regulating T4>>T3... so basically some bits of you can get more T3 than others do , and it's not possible to tell which from an fT3 test.
in the real world .... theory aside ..... some people do notice symptoms of overmedication with high T4 when T3 is in range , and some don't.
But the risks associated with higher T4 levels are definitely 'a thing' to consider.
I have high T4 quite often ( with fT3 mid range or lower) and it usually doesn't give me any symptoms of overmedication, but once it did coincide with very clear overmedicated symptoms (frustratingly i don't have an fT3 result from that occasion ) , so the jury is out as far as i'm concerned ... but even if i have no symptoms of overmedication i will now usually try a small reduction in Levo if my fT4 is over range, just to see how it feels and give it at least 6 wks to settle in before judging any effect on how i feel .
Yes indeed, quite a complicated gland it is. I think i know why my ft3 is low, i was actually on steroid course of Prednisone for some weeks in mid-high dosage for some unrelated health issues, i was told by rheumatologist that FT3 and FT4 can be suppressed by prednisone and my actual numbers may be even higher once dust settles. But can't say for sure, its a complicated gland and complicated autoimmune issues
With each persons journey with Graves being unique to them -
Graves then becomes this poorly understood Auto Immune disease by mainstream medical but we do seem to have some common traits in what triggers Graves and stress and anxiety do seem to be the front runners.
When other, unrelated health issues occur your body will assume a heightened state of anxiety and Graves may well be rearing its ugly head.
Whilst it's recommended where you should try and keep your T3 and T4 within the ranges as you have discovered other drugs can also have an impact on thyroid levels and blood tests tend to run behind symptoms being experienced by a couple of weeks, so you are always in some sort of limbo or ' catch up mode ' .
Added to this there is no way of controlling your immune system response and all we can do is take the Anti Thyroid drug to try and offset the worst of the extremes of symptoms that are being tolerated.
It is complicated and we tend to over think, and feel the need to be in control !!
Thank you penny, good to hear from you. Do you reckon I should up the dosage slightly to offset the increase in symptoms?Sadly endocrinologist is of no use at the moment and cardiologist referred me to another but wait is in months 😭. My GP says he doesn't really understand graves as well to manage the dosages based on the complexity of the diseases as with graves each person may have different sensitivities. In hindsight I wish I hadn't gone for surgery or work trips which resulted in some more infections that affected immunity further. I was stable and happy for a few months on low dosage methimazole before all this and now symptoms are raging back, muscles twitching, tremors, muscle loss, nervousness, gut issues and more.
all the Anti Thyroid drug does is to try and offset the worst of the symptoms being tolerated by semi- blocking new daily thyroid hormone production while we wait for your immune system response to calm down again -
but by semi - blocking your own new daily thyroid hormone production there's a risk your levels of T3 an T4 fall too far through the ranges causing the equally disabling symptoms of hypothyroidism.
Has Block and Replace been suggested - in this way the dose of the AT drug is increased to fully block your own natural thyroid hormone production BUT a measured dose of T4 is also prescribed to keep your T3 and T4 at an even keel ?
I think your Stateside aren't you - have I mentioned Elaine Moore to you - elaine-moore.com
Sadly the endocrinologist is very oldschool and does not accept block and replace, i tried to push for it twice but he didn't agree :(. Even the cardiologist thought it was a good idea but endo did not agree so i am limited in terms of options and likely looking at few months of wait for new endo. I have had quite bad experience overall with endocrinologists over time with most not understanding graves well
Ah yes, thank you, i did use elaine Moore forum once, i guess you recommended it to me last year when i got officially diagnosed, i will text there again for some more knowledge on the topic.
The closest possible appointment seems 6-8 weeks away, so its a matter of wait and watch, but symptoms are getting quite bad, so i hope i can get in sooner rather than later, you know how it is with graves, it turns everything in body to 1000, i have to eat 5-6 times a day to sustain weight and still it dips quick and muscles start wasting and losing strength quick also if levels steer away from my optimal ranges. Fingers crossed i will be able to get in with some good specialist again
I really really wish more research is done on Graves in coming years and more treatments come up. I am really very happy to see progress with Immunovant's recent success with graves and TED treatment trials, it really brings hope for lasting remission. Most of the Endos i have been to seem more like diabetes specialists or Hashimotos specialists as they see 10 times more Hypo cases. Sometimes it feels like i am the doctor and i have to explain my disease to the doctor vs the other way around.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Worsening cortisol-like symptoms after starting iron supplement?
Cabrimazole over-prescribed? Antibody query
'Brief radiation spike' after rocket engine blast in northern Russia
Congenital/Child Onset Central Hypothyroidism
Upping T3 - thyroid results advice 
