Odd graves

[DeeD123]

Hoping someone will know. I have been getting odd result considering it graves related. My ft4 is bottom of range but tsh under and ft3 above ( not by much though ) endo has said this sometimes happens in graves. Anyone heard of it. Still taking 75 mcg WEEKLY.

[asiatic]

You are obviously a difficult case. Have you ever tried block and replace ? Perhaps taking Catbimazole would damp down your TRAb and reduce ft3 and you could add in Levo adjusting to bring up fT4. You would need to be carefully monitored and I hope others will comment if this suggestion is not a wise course of action.

[DeeD123 in reply to asiatic]

Thank you for replying.They reduced levo two months ago from 100 weekly to 75 weekly . I’m feeling very underactive at the moment. Waking headache, bed at 8 no energy etc. My neck and shoulders are very stiff as well all of these symptoms were present when underdosed and hashimotoes only. Not due for another blood test for around 6 weeks. If I had just been under I would have increased dose for myself by now😢

[Hennerton in reply to DeeD123]

Are you sure you have Graves? What were your blood test levels when you were first diagnosed? It seems more like Hashimotos with a hyper swing and you sound very undermedicated at the moment.

[DeeD123 in reply to Hennerton]

I have both. Hashimotoes over 20 yrs graves around two yrs

[DeeD123]

Sorry , feels like I’m moaning and that’s not my intention. X

[asiatic in reply to DeeD123]

You are allowed to moan . We understand. I have Graves and high ish TRAb with possible blocking TRAb dominating which can make me hypo. I am on B and R which works well for me. I just think that because we are all different we need to experiment a bit to find what works for us. As long as we are being regularly monitored I don't believe we will come to any harm. I didn't even need blood test to know my thyroid status. Like many on here you know immediately if you are hypo or hyper.

[DeeD123 in reply to asiatic]

Thank you. Didn’t realise how low I feel as you just made me cry. I suppose we all have limits even me. Block and replace only suggested once. Not recommended apparently as I have ted 🤷‍♀️though my eyes don’t seem to have been made worse by the recent graves activity.

[asiatic in reply to DeeD123]

"Block and replace only suggested once. Not recommended apparently as I have ted "

I find that strange as I was put on B and R BECAUSE of my TED. Going Hypo can cause TED to worsen. What evidence had they to support that statement. I have read a lot about this disease and have never heard mention of this.

[DeeD123 in reply to asiatic]

It’s was brought on this last time by gp reducing my levo ( my second round with it ). Tsh went to 3.5 free ts bottom of range . I have pointed this out to endo and it does worry me. He is a bit of a wizz kid in respect of being pro t3 but I’m afraid my confidence in him is waning. I didn’t develop graves antibodies until after I was put on immune suppressants. Never ever had any symptoms before even though I have had ted for 12 yrs yet he is saying I must have had it. I did read something not so long back that said you could develop graves from being on immune suppressants so I’m definitely not convinced

[greygoose]

Diogenes gave you a plausible explanation for that in your last post. But, how do you feel with those results? If you feel ok, don't change anything.

[DeeD123 in reply to greygoose]

I feel dreadful to be honest, I will have to read his reply again thanks gg

[greygoose in reply to DeeD123]

You're welcome. You got a lot of interesting replies on that thread, well worth re-reading.

[DeeD123 in reply to greygoose]

I did read but maybe I’m not as sharp at the moment

[greygoose in reply to DeeD123]

It happens.

[humanbean]

Do you take biotin in any form? It can be taken as a separate supplement and is also found in many B Complex supplements. It can also be found in supplements intended to help improve the condition of hair, skin and nails.

Biotin can corrupt some blood test results, and thyroid function tests can definitely be altered by taking biotin. It is not the patient that is affected in this situation. It is the test machine giving dodgy results.

healthunlocked.com/thyroidu......

From that link :

Biotin interference gives falsely high or low results in competitive or immunometric immunoassay respectively (4). It may cause falsely raised thyrotropin receptor antibodies (TRAb) as seen in one of our patients. This could lead to a misdiagnosis of Graves' disease. Biotin also interferes with the measurement of testosterone, oestradiol, dehydroepiandrosterone-sulfate (DHEAS), parathyroid hormone, ferritin and thyroglobulin, testosterone, thyroglobulin, leutinizing hormone (LH), follicle stimulating hormone (FSH), sex hormone binding globulin (SHBG), vitamin B12 and folate (4).

Anyone taking biotin should always stop taking it a few days before blood tests of any kind.

[humanbean in reply to humanbean]

Another useful link on the subject of biotin :

endocrinenews.endocrine.org...

The article describes several of the findings you've described from your own blood test results.

[DeeD123 in reply to humanbean]

No biotin. I get b12 8 weekly injection and take vit d3 +k2. Stopped selenium a while ago as after 5 yrs I found no benefit

[humanbean in reply to DeeD123]

That's good news.

[DeeD123 in reply to humanbean]

Thank you for taking the time to reply. X

[SlowDragon Administrator]

Have you had folate, ferritin and vitamin D tested recently

As you have B12 injections it's recommended to also take good quality daily vitamin B complex, one with folate in not folic acid

But remember to stop taking any supplements that contain biotin like vitamin B complex a week before any blood tests

Are you on strictly gluten free diet? Or tried it?

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies

While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first

Assuming test is negative you can immediately go on strictly gluten free diet




(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)




Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse

chriskresser.com/the-gluten...

amymyersmd.com/2018/04/3-re...

thyroidpharmacist.com/artic...

drknews.com/changing-your-d...

restartmed.com/hashimotos-g...

[DeeD123 in reply to SlowDragon]

Been gf for around 5 yrs since going keto. Not taking a b complex but I’ve had my level tested and I’m well over halfway in range since following a vit d protocol. Can you recommend a good b complex please as I hate wasting money on mostly fillers. I also take magnesium

[SlowDragon Administrator in reply to DeeD123]

I like Igennus Super B complex. Good quality ingredients, folate (not folic acid). Nice small tablets. Full dose is two per day, many find they only need a single tablet. Available on Amazon

[DeeD123 in reply to SlowDragon]

Just ordered. Thank you. X

[DeeD123 in reply to SlowDragon]

Will need to check foliate and ferritin

[DeeD123]

Update. Levo reduced again. 50mcg weekly now. Different endo so will be emailing my usual one to make sure. My symptoms seem to go in 3 weeklyish cycles. Hyper but not to bad , feeling like me, and badly hypo. Strangely my double vision disappears when hyper and gradually returns over the next two cycles. Thankfully no change to proptosis. New Endo again suggested tt ( why is it always first thing they do grrr)but I’m not going for it and explained my reasoning to which he didn’t put up an argument