High thyroid anti-bodies but controlled Graves disease.

[Noniekin]

I have been treated successfully for Graves disease in so far as my T3, T4 and TSH levels are back within normal range. However, my anti-bodies are still off the scale. My endo says high anti-bodies in themselves don't produce symptoms - only the other markers I noted. But, my blood pressure keeps going up, my throat is sore and my ears are ringing loudly. I am on Carbmazole down to 5mg daily now. Anyone got views on the effect of extremely high anti-bodies and how to bring them down?

[Greekchick]

Dear Noniekin,

I had normal blood work for 23 years and had symptoms for only the last two years of that time also which included high BP - I was on methimazole and well controlled for the last two until I became resistant to it ( I have Graves and just had a TT 8 weeks ago for that reason and because my goiter doubled in size in one month ).

You need to be evaluated for not just bloods but your overall clinical profile - if you have symptoms like high blood pressure etc, this is something that needs immediate attention. There may be other reasons your BP is high - but I would check into this and possibly get a second opinion. Please do not let a doctor tell you that if your thyroid blood work is within limits you are OK if you have symptoms! This happens too often and leads to bigger problems later. I wish you the best of luck and hope you get the help you need. Sending you positive thoughts.

[Noniekin in reply to Greekchick]

Thanks so much 😊

[Rush2112]

I have been in remission or so they say for 4 years still have high antibodies and still have symptoms I think they do give symptoms despite what they say

[Noniekin in reply to Rush2112]

Yes me too. How can high antibodies just do nothing?

[Noniekin in reply to Rush2112]

Yes I think so too.

[Fruitandnutcase]

Agree with Greekchick. Don’t let your doctors fob you off if you are still not feeling good. Have you had your Vitamins D and B 12 checked out as well as ferritn and folates? They all need to be well up within their ranges to support your thyroid.

I massively reduced my thyroid antibodies by gong totally gluten free about five years ago - I actually did it because I develop another autoimmune condition but I noticed my thyroid antibodies steadily reduced when I stopped eating gluten / wheat containing foods.

I have been in remission and off all thyroid drugs since 2013 so it could be that the antibodies would have gone eventually even without being gluten free. I’m not prepared to go back to eating gluten to find out though and I don’t know what the result would be for someone still taking carbimazole but it would be worth giving that a try. It’s got to be totally gluten free. If you need help then join coeliac.org.uk/home/ they have loads of information and you get a handbook with every known gluten food food known to the gluten free community. If you want to know if you are coeliac you need to be tested while you are eating gluten once you stop the test won’t work and if you’re like me you won’t want to go back to eating gluten just to be tested.

[Noniekin in reply to Fruitandnutcase]

I’m not coeliac, bit am adjusting diet. Weight keeps going up! What a nightmare!

[Fruitandnutcase in reply to Noniekin]

No I’m not either I just decided to cut out gluten to see if it calmed down my autoimmune system. My weight is going up too. I think my thyroid is going more hypo now but I’d say I’m eating too many carbs at the moment as well. Certain carbs (the most tasty ones!) and I don’t get on.

[Noniekin in reply to Fruitandnutcase]

I might try gluten free too - weight gain with carbs for me is unmanageable.

[Boohesnah]

Hi,

I have Graves, but I am in full antibody remission.

I was told by 2 consultant endo’s that I would never reach remission. ‘Your disease is so severe and difficult to control’ and a professor, ‘in my 40 yrs of experience, you will not reach remission and you need RAI’. Neither of them talked about antibody load and dismissed it. I can tell you that they do give symptoms and as I am now Unmedicated and in remission here’s the things I noticed. Migraines, I no longer suffer with. Eye symptoms also gone and the gut and brain symptoms too.

The key for me is that because Graves puts your body through such a battering, it’s like running an engine with the pedal to the floor for so many months/ years, it takes its toll on every body system.

Good nutrition is really essential as you will have burnt through all the stored vitamins and minerals. It could well be that you need to supplement for a while. (It caused bone loss, muscle wastage, leached calcium from my teeth and it puts all your organs under pressure. They need nutrition and time to repair the damage)

I took a high dose Vit D, 200mcg of Selenium and a B complex daily.

I ate a Mediterranean style diet. I completely cut out any sugar, starchy carbs, reduced gluten and ate absolutely no processed food at all.

But crucially I also stayed on low dose carb (it took 16months for my Ft3 and Ft4 to come into range and longer for TSH) until my Trab antibodies became undetectable, which was for nearly 4 yrs.

there is research to show that Selenium and Vit D lower antibodies and increasing research that shows the connection with gut health (healthy biome) and intermittent fasting and very low carb, calorie restriction. There’s now strong evidence that it resets the immune system.

Ringing in the ears could well be Vit d and B12 deficiency. Mine improved when thyroid hormones were in range and the body started to repair. I don’t have this symptom at all. For years I had to sleep with a radio on as the tinnitus was so bad.

It could also be that supplementing or eating food high in magnesium will help with the blood pressure. There is also good evidence of this.

It’s crucial to make sure your Ft3 and Ft4 are in a good place. Usually people feel best when they are mid range or slightly above and TSH under 2. I became quite over medicated, very hypo and felt dreadful for quite a while, while I worked this out and I put on 4 stone. (Which I since lost when I stopped carb)

There’s a lot of research on pubmed around benefits of Selenium and Vit D and the effect on Graves antibodies and also not stopping treatment until the trab’s are undetectable <0.9.

Also look up keto for autoimmune. Putting the body into ketosis has been shown to benefit and reset the immune system. Look up autoimmune disease and ketosis/fasting.

Good luck. I believe there are many people who end up feeling very unwell with Graves, because the endo’s tell us antibodies don’t matter... well they definitely do. They admit that they independently cause TEd.(inflammation in the fatty tissue behind the eye, and myxoedema on skin ) It’s not a huge leap to see that they also cause inflammatory response to other tissue elsewhere, but just because they can’t see it, doesn’t mean it doesn’t. I certainly had a number of symptoms that I no longer have, that the endo’s said we’re not Graves because my hormones in range. When the antibodies lowered they all disappeared. There are thyroid receptors in almost every cell in the body.

I hope this helped.

In essence,

Stay on meds long term if needed.

Don’t stop meds’ until trab’s undetectable (carb works to lower the antibodies as well as suppress the thyroid.They don’t completely understand why.) This will very often mean staying on meds much longer than 12-18 months that the endo’s /guidelines say. There is now plenty of evidence to say that this is safe (although they still try to scare us by saying it is not. If they say this, ask for the evidence. The risk is in the first few weeks and on high dose. It’s a drug that’s been in use for many decades and there have only been ‘a handful of cases, world wide over many years’. The current protocol of stopping meds and ‘wait and see’ is bonkers when they can test trab’s and know that when they are undetectable it is the best indication of long term remission. (Research backed) I just don’t understand why the arbitrary time on meds of 12-18month and then stop is still being used. It’s just guesswork and not necessary and people invariably bounce back hyper and continue to deal with symptoms)

Eat really, really healthily, look after your gut.

Make sure you have enough Vit d,vit B, Selenium, magnesium.

Keep your Ft3 and Ft4 stable and around mid range. Don’t worry about TSH, it will take care of itself.

[Fruitandnutcase in reply to Boohesnah]

I can’t understand why endos and doctors generally don’t seem to be bothered about thyroid antibodies, they never test to see if you still have them and they don’t seem to see any point in doing anything to try to reduce or even get rid of them. It seems that once they know you have them, they are never mentioned ever again.

Still I suppose that ties in with the fact generally they don’t want to test your vitamins and minerals (well mine didn't) and don’t mention diet and nutrition.

[Boohesnah in reply to Fruitandnutcase]

Yes, it’s incredibly frustrating, I had to become my own expert, do all the research and have the debate with the endo’s. To be fair once I presented the evidence (which is all readily available on pub med) they did support me and agree to test Trab’s and leave me on treatment longer. They even stopped mentioning Rai or TT, but I really did need to know my stuff. I find it frustrating and upsetting that so many people end up having their thyroids destroyed needlessly and a life of hypo hell. I still hear too often that people are told that having a TT or Rai will cure them. As for the antibodies not affecting your body, it’s incredible when they know full well the devastating affect they have on eyes and for me also my gut and mental health and executive functioning. Thyroid disease seems to be on the increase, yet the management of it seems to be decades and decades behind. It’s still treated the same way as it was 50yrs ago. I can’t think of another disease that treatment hasn’t evolved and more especially now they know it is an autoimmune disease and not a disease of the thyroid.

[Noniekin in reply to Boohesnah]

Yes I agree - mental health, fatigue and eyes/ears/sore throat. Yet all my ’real’ indicators back to normal. I suspect the antibodies cause ongoing inflammation but no-one is much interested.

[WestBurrafirth in reply to Fruitandnutcase]

I have also had no real response from endocrinologists when I try to discuss diet; it just doesn't seem to be in their vocabulary. I sought advice from a herbalist, and have gone gluten-free. I have looked at low histamine diets because of the hives and have resorted to an antihistamine tab a day to keep them at bay. Although I can't get there with a totally low histamine diet as it's just too restrictive, at least I know what to try to avoid. I am taking various herbal preparations - bugleweed (gypsywort) which is also known as Lycopus virginicus - which I am told is the key herb in hyperthyroidism and Graves Disease, and this has been the leading herb in my prescription from her, plus Motherwort (Leonorus cardica) and lemon balm (Melissa officinalis) amongst others.... There are also a lot of supplements that could help support us because of the thyroid issues we face. I take Optibac for good gut bacteria promotion. Selenium is, as has been mentioned, known to be key. There is also strong evidence for zinc, magnesium, vitamins A, C, B complex, D and EFA’s (esp omega 3 and 7) all to be of particular use. Maybe it’s not as ideal as obtaining all these nutrients from our diets, but supplements can really help support us, especially in times of crisis. In simplistic terms - because our thyroids has been over active, causing the metabolism to work so hard, our bodies could do with support maintaining and replenishing vital nutrients. My levels have normalised recently (hurrah!), but I am still taking Carbimazole (10mgs). My eyes are not good at the moment and I use Hycosan eye drops to counter the dryness and gritty feeling. Am trying an eyebright poultice at least once a day (which is an excuse for just lying on the sofa for a while!), and I think this is helping. My optician said (surprisingly) to eat lots of kale and spinach and broccoli. Also not going on the computer so much! Best wishes to you all!

[Noniekin in reply to WestBurrafirth]

Interesting idea about herbal supplements - will look those up.

[Fruitandnutcase in reply to WestBurrafirth]

I keep eye drops in all my pockets, I have to put them in frequently throughout the day. My eyes were awful a few weeks ago but whatever pollen was aggravating them must have stopped because they are much less dry at the moment - won’t last though.

[Noniekin in reply to Fruitandnutcase]

Yea it’s very odd and I am sure they produce symptoms and should be tested/treated.

[Noniekin in reply to Boohesnah]

Wow, that is for that - very helpful. Sorry to hear you went through such hell. It’s so hard to communicate with endocrinologist who have not been through it themselves. Also I too thought of antibodies effect the eyes then that’s not nothing - they may be affecting other organs too - particularly my eara that won't atop ringing and just general fatigue. Am sticking on the meds and taking supplements but not well enough to return to work. Good luck with yours 😊

[Noniekin in reply to Boohesnah]

Thank you very much for all that information 😊

[purple64]

Hi I have the same problem. All I was told earlier in the month was to stay on Carbimazole as he was sure I will eventually go into remission. Like you I still get symptoms. I did ask about going gluten free but no comment was made

[Noniekin in reply to purple64]

Good luck - blimey it drags on and on feeling like crap!!

[purple64 in reply to Noniekin]

Sick of feeling exhausted but can't sleep. Last blood test the antibodies had gone up again 🙄

[helvella Administrator]

Which antibodies are you talking about?

[purple64 in reply to helvella]

Trab

[helvella Administrator in reply to purple64]

Is the test you have had done specific for stimulating TRab? Or just general TRab - including blocking and "don't have much effect" antibodies?

[purple64 in reply to helvella]

Stimulating as far as I know

[Noniekin]

Yes I think so - just always feeling under par but not full on sick - so no one quite believes you.