I’m hoping that someone out there may be able to give some advice.
I (42yo white male) was diagnosed with Graves’ disease a couple of years ago and went through a course or carbimazole to get it all back in the right limits. I have been off medication for over a year with normal blood test but the last few weeks have been tough. I really feel like I’ve been back to where I was before I was taking medication. I’m experiencing problems with my mood, my appetite, I’ve lost over half a stone in about 6 weeks, itchy eyes, the shakes. I’ve had two sets of blood tests in the last two weeks but they’re in the “normal” range. Has anyone else experienced this?
I feel like my thyroid isn’t working properly but won’t get anywhere with the specialists as my tests are “normal.”
Any advice would be appreciated. I can deal with the physical symptoms but the mood issues are really challenging!
Thanks all.
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HappyChappy101
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They do tend to bandy 'normal' about which isn't very helpful when you feel anything but!
Do you have some results with ranges you can share? Ideally if you have some from when you felt well and your most recent ones as what we are looking for is your personal sweet spot
With Graves being an autoimmune issue it can flare up 🫤
Difficult to comment on your frees because you haven't put any ranges. We cannot interpret blood test results without ranges because they vary from lab to lab.
However, pretty sure your results aren't showing any signs of hyperthyroidism. Just based on the TSH alone, you are far from hyper. But, you could be hypo, the symptoms are similar.
How was your hyperthyroidism diagnosed? Were antibodies tested? If so, which ones?
With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a separate B12 supplement
A week later add a separate vitamin B Complex
Then once your serum B12 is over 500 (or Active B12 level has reached 70), you may be able to reduce then stop the B12 and just carry on with the B Complex.
If Vegetarian or vegan likely to need ongoing separate B12 few times a week
Igennus B complex popular option. Nice small tablets. Most people only find they need one per day. But a few people find it’s not high enough dose and may need separate methyl folate couple times a week
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 5-7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg)
Post discussing how biotin can affect test results
Looks like you might be heading for a relapse. I am struggling with my thyroid at the moment. I have been through some stressful events in the last 2 years and I am starting to feel some of the nasty side effects I used to have when my levels were too high in the past. I will be getting a private blood test in January to see what is going on with me.
Just to add I am having a few mood swings and I have just been watching Virgin River on Netflix which is a bland happy go lucky series which definitely lifts my mood! Sorry I can’t be more of a help at this moment. Also avoid alcohol and large amounts of coffee
Graves is an Auto immune Disease and as such there is no cure - and for some it can be a multi organ, chronic long term health issue -
though for very many other people they have just one phase of an overactive thyroid gland and their thyroid gland resets itself after treatment with an Anti Thyroid drug and they never have any further issues and this first episode - the last episode - and just a ' blip ' .
Can you please share your initial blood test results at diagnosis and the reading of which antibodies were found positive and over range in your bloods before you started treatment - with either Carbimazole or Propylthiouracul ( PTU) and were you also taking a beta blocker ?
The antibody from your initial blood test at diagnosis will read as something like a TPO - or a TgAb - or a TRab - or maybe worded as the TSH Thyroid Receptor antibody - it is very important we know which Auto Immune disease you are dealing with as an over active thyroid gland is not exclusive to Graves Disease.
All the AT drug does is semi block your own natural daily production of thyroid hormones and simply puts you in a holding position - buying you time - ( much like a plane waiting to land -circling around - loosing height and fuel - waiting for a landing slot ) - while we wait for your immune system to calm back down again - and your thyroid return to its ' normal ' set point.
When metabolism is running too fast as in hyper or too slow as in hypothyroid - or controlled by an AT drug - as in this treatment regime - the body can struggle to extract key nutrients through food no matter how well and clean you eat - and non optimal levels of the core strength vitamins and minerals - namely ferritin, folate, B12 and vitamin D can further compound ones health issue.
I now aim for a ferritin at around 100 - folate around 20 - active B12 125 ( serum B12 500 ++ ) and vitamin D at around 125.
When diagnosed did you also get checked for celiac and pernicious anemia - and these other AI diseases ruled out - as for some people - having one AI disease - triggers another :
Please ensure ALL preparations you use to ease your eye discomfort are Preservative Free - even those prescribed by the NHS :
I'm not sure what else I can suggest as it is true your blood tests are in the range and considered ' normal ' but we do not know where your set point was before this phase of ill health - but you know your body -
Graves is said to be a stress and anxiety driven AI disease - ( does this ring true for you and ring any bells ) which I have and understand that no 2 people with Graves present in the same way / manner and which makes this AI disease poorly understood by mainstream medical -
I detail below the most recent research regarding treatment for Graves Disease :-
For all things Graves I found the most well rounded of all I researched that of Elaine Moore - elaine-moore.com
For all things thyroid you can read around on Thyroid Uk - who are the charity who support this patient to patient forum. thyroiduk.org
P.S. Just thinking when the thyroid comes under attack from theimmune system there can be some overlap in antibodies and if Graves antibodies are found and a positive Graves treatment takes precedence and an AT drug prescribed -
You may also have had some other thyroid antibodies activated which may now be causing similar symptoms - and possibly liable to erratic swings in symptoms as seen with people dealing with Hashimoto's AI thyroid disease -
You can arrange your own Private blood test for Graves Disease - for peace of mind you can order a Private blood test for the Graves antibody - and just wonder if you might also arrange a thyroid blood test to include the usual thyroid antibodies as detailed for Hashimoto's - viz - TPO and Tgab.
Hi, sorry your still feeling awful.Felt i needed to reply as I to was diagnosed with Graves Disease and i to feel anything but normal after my bloods returned to "within range".
I've been off carbamizole for a year or so, and wish I could feel like i did before Graves.
Unfortunately, this is not the case, I'm constantly up and down with mood, and my heart rate also varys considerably, in that my resting heart rate is stable for couple weeks then rises for couple weeks.
It's the same with heat intolerance, sometimes fine, sometimes not.
Therefore, resigned myself to the fact that Graves Disease has made a permanent change to my health.
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