If I'm diagnosed with graves and hashimoto, does graves eventually die off, and then Hashimoto takes over last by becoming hypo? Then you have to take a pill for the rest of your life? My sons pedritrian was telling me that yesterday.
What happens really?: If I'm diagnosed with... - Thyroid UK
What happens really?
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sarajuarez2912
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I have just been diagnosed with Hashimoto and about to start medication my GP has stated taking medication will make about 50% difference and the rest is about work life balance and reducing stress.
I would get the book STTM-stop the thyroid maddness and join the FB group; FTPO-thyroid issues, Hashimoto's. They are very knowledgable and I learned a lot from them. They are based on a book called STTM-stop the thyroid maddness. You will learn so much and feel so much better if you have the right tools. Good luck!
Your GP is talking out of his hat ...
Hashimoto's is the auto immune form, so not exactly. Graves will burn out your thyroid yes, in all probability. And you will have to supplement for the rest of your life. But you may never have TP antibodies so might not have Hashimoto's.
Lots of us do OK with it. It's a condition that needs management, you need to be very organised and get an account with a vitamin company like Biovea or Bodykind or Boots
But if you pay attention and follow some basic rules. Life can be almost normal.
The most frustrating thing will be your medics. They will have done ten minutes in five years on Thyroid issues, their heads have been controlled by big pharma to point you to one drug only and if it doesn't work for you. You'll basically have to sort yourself out.
So here's hoping you're not diagnosed with anything at all.
Good luck
• in reply toRedditch
Dr. shopping is no fun, thats for sure, but seriously important especially with autoimmune disorders. Best of luck
'Graves will burn out your thyroid'.
Please can you back this up with evidence?
LOL ....
You'll need to do a lot of reading up as dr know didly squat when it comes to thyroid issues and wont want to help. They will tell you your ranges are normal when they are not!
Any blood results post on here and the clever ones will decipher for you.
Stay on this site, it's invaluable.
If you have Hashimotos you will need to be strictly gluten free.
Mary Shomon books
Kris Kresser website
Auto immune recovery plan by Susan Blum
Books and website of Datis Khazzarian (Hashimotos god)
The Paleo Approach cookbook by Sarah Ballantyne PhD, has some really good recipes for those with any type of autoimmune disease. you need to get really organised to follow it, but well worth it
Hiya
No you'd have a condition called Hashitoxicosis which is more treacherous and harder to control. Generally the hashitmotos starts first (maybe years earlier) and then the Graves overlays on top, this means you are kind of hypo and hyper at the same time. Symptoms can be really unpleasant, and inflammation in the thyroid can drive a lot of symptoms.
You need a full antibody panel testing TPO (60% of graves patients also have TPO so this is not diagnostic on it's own, as elevated TPO are generally found in Hashis), TRAB (TSH receptor antibodies, diagnositic for graves, also called TSI - you can have blocking and stimulating TSI, these need checking) - if you also have elevated TgAb then that's the clincher for Hashis AND Graves.
You'd need a re-uptake scan, where they use a tiny, tiny amount of radioactive iodine to see what's going on in your thyroid, as well as an ultrasound.
Hashitoxicosis is a term typically used in the UK to describe the T3 toxicity of Hashi's, but in America, and increasingly in the UK, it's used to mean a combination of Graves and Hashi's together. I had this (as well as eye disease and thyroid cancer) and it's no picnic.
You really need to find a good endo pronto, and to educate yourself about what's going on.
Btw, you just take a pill for the rest of your life is the biggest lie ever peddled by endocrinology, it's far more complicated than that ... Graves in particular needs extremely careful handling indeed, as it affects every system in your body and if left uncontrolled it is very dangerous.
thyroidboards.com/hashitoxi...
Girlscout
x
PS unlike the woman on the link above, by the time I had Graves antibodies (I clearly had Hashi's for about 20 years when I finally got my medical notes, my TSH was up and down like a fiddler's elbow!) my blood results were generally TSH suppressed (due to TRAB), T4 never went out of range, T3 sometimes low, sometimes high, and sometimes normal. However, my German endo (who saved my life) said by the histology of my thyroid, I'd been hyper for at least a decade, and I'd been cycling through T3 spikes every four hours by the end.
Hi All,
I had graves diagnosed at 17, I had eye complications for which I later had surgery, I had 7/8 of my thyroid removed at 21, I was not given thyroxine until 4years ago, when I was diagnosed with hashi's, I thought I was over the graves when I went hashi but reading this I think I must have both. I have both antibodies in the high range to. Why has no doctor explained that I have both, all I get is TSH is NORMAL. When I feel awful.
Not again another ignorant doctor, if you don't have your FT4 FT3 done at the very least how do you know if your in range, or converting properly. Example if your TSH is ok your FT4 (which you don't know) is normal yet your FT3 (which you don't know yet) is rock bottom then it's not getting into,the cells to work,
this can cause a high RT3 and if you don't have the common nutrients tested like but not limited to are Zinc, Magnesium, Vit A, Folate, B12, Vit D3, Iron/ferretin, Copper, you don't know if some of these are a problem or not or if your levels are high enough.
Which obviously by you feeling crap something or two isn't right, that's why we get testing done, they tell a story, you could even have an adrenal problem, need I go on.
I suggest you copy this and give your doctor, and to do his/her damn job properly... Your symptoms are telling him something is wrong... 😩 Hope this helps you...
Aw yes thank you I am so glad I found you all.
Kayla .
Oh not as simple as prescribing and taking a little white pill or two is it lol. One other thing too thyroid problems are as individual as we are, need to find out what works for you.
And if your doctor tells you your ok your in range "tell him/her to wear shoes two sizes too small and see how he/she feels, after all it's in the manufacturers size RANGE" and if the doc won't then tell him/her to get them damn tests done...
Remember your symptoms tell you and the doc things aren't right, the tests help you n the doc find out what's not right...
Hiya
Do you still have high TRAB (TSH receptor antibodies)? It is these that attack the eye muscle and the thyroid in Graves. If you do, then you should NOT be being monitored by your TSH - this is Graves disease 101. Also TSH goes up and down in Hashis and is not a good indicator of your thyroid status, your FT4 and FT3 are. Plus latest research shows that once a patient is ill and on replacement hormones, the feedback loop doesn't work (this is how you got ill in the first place) so TSH is not reliable.
Personally I think that someone who has virtually no thyroid who is being given just LT4 (levothyroxine) is being negligently treated .... you need to know what your FT3 result is, and be dosed accordingly. Including adding some T3 if you are not converting T4 to T3 (this would show on results as a high T4 and a low T3).
Also, my endo told me, that years of autoimmunity, in ways in which they still dont' really understand affects your cell receptors and peripheral metabolism ... your blood results are really not the full picture. There are other biomarkers they can look at to see whether it's getting into your cells, such as SHBG and Creatinine.
x
Hi Girlscout2,
I don't think I have ever had TRAB tested. How would I be able to get this tested?
I am finding all my issues difficult to cope with atm it's such a mine field isn't it.
Kaylala68 x
This is the problem, they see the eye disease and think 'you must have TRAB' and don't test. Are your TgAb still really elevated? If yes then you should have a scan (I've been living in Greece all summer, and ultrasounds are standard at endo appointments) as you may have nodules or something else going on.
Best place to start is to request a copy of your blood results, they may argue (be nice, an adversarial relationship with your doctor is not fun) but you are entitled to see them, it's your data and it belongs to you, you don't need to give a reason. Get back copies if you can. Then post here.
Hashis when it's active can make you feel really awful as well, as really the victim is your thyroid but the perpetrator is your immune system. Which is why the whole 'removing the thyroid cures Graves' is such a joke, this is akin to saying removing your head cures a headache. Hashis is better controlled with a high enough dose of thyroid medication which shuts down the thyroid (and takes over) and tamps down the antibodies, this usually requires some T3 as well as T4.
Also undertreated thyroid can really mess up your gut absorption of nutrients, low iron in particular (and low B12, folate, Vit D etc etc) can really mess up thyroid conversion and how you feel.
It's hard work figuring this out when you are foggy and tired but it is possible. I also had eye surgery, and Graves and hashis, and cancer, and these days I just use Endos for cancer monitoring and free blood tests and don't take much notice of their 'recommendations' and do it myself instead.
x
Hi thank you for the info.
I posted my results in an earlier post I'm very new on the forum so don't know if you can see them once we have moved on to other issues lol.
I still have elevated TgAB and anti peroxidise.
I had bilateral orbital decompression in 2005 when I see eye specialist they say everything is Normal TSH is good blah blah gave me some drops for dry eyes see you next year. No mention of TRAB next visit to GP I will ask if I have had this test done.
Before I had thyroidectomy I was told there were nodules whenever I mention that it's brushed aside. I had a scan last year I was told it has regenerated and if it wasn't for the scar they wouldn't believe I had surgery.
I wish I was in Greece I'm so cold it's horrible.
I hope you are keeping as well as you can.
Kaylala68
Hey
I'm thinking of emigrating as I do so much better in the warm. Just had a look at your results, your thyroid results aren't too bad (although TSH is elevated, although that might be the antibodies) but your co factors are low - did you test iron also? B12 in particular is too low.
I do weekly collatan sunbeds in the UK to up my Vit D (lower cancer risk and collagen producing so anti ageing to boot!) and I spend lots of time in a sauna to help my peripheral metabolism.
That high TgAb needs investigating, did anything show up on the scan?
I had double strabismus surgery in 2013, fortunately my protrusion wasn't bad enough to need decompression, you have my sympathy.
Also, hope you sorted the T3 issue, it's 2 euro over the counter in greece.
If you dont' feel better you might want to look at NDT, and doing it yourself. My blood results were 'perfect' on synthetics but I felt like hell, my blood results are the same on NDT but I feel like a different person. I think being ill for a long time with autoimmune disease does something funny to our cell receptors ... NDT works for me.
x
Hi
I fair much better in the warm to we go to lanzarote 4 times a year or top up everything.
I did sort out T3 supply thank you much cheaper.
I'm not sure if I had iron done it doesn't say on my results does it? I get so muddled .
The scan proved nothing except it had regrown. I had it done as I have difficulty swallowing .
I will look into the sunbeds for sure anything to feel better .
I feel for you to any eye surgery is so very uncomfortable and I found decompression an awful experience.
I cannot believe how neglected we all are and for some many years it is awful.
I have just started to see a wonderful private endo so for the time being I will stay on the T3 journey and see how it goes but at least there is another option for me if it doesn't work NDT is there.
I'm glad you have found ways to make you feel better that gives me hope x
No wisdom to impart but, Jeez, isn't it desperate with these medics? Girlscout2, I'm almost ready to zoom over to find your German endo! We muddle on.....
Haha, he was working in London, he was brilliant, he's now emigrated as he says UK thyroid care is 'barbaric' and he 'refuses to practice medicine under these conditions' ... a great loss ...
Indeed, boo hoo. I do however have a German naturopathic doctor. Maybe I should get her to manage my thyroid instead. But of course, then no NHS meds.
Just don't tell your GP and keep picking up the scripts and say, no doctor, yes doctor, three bags full doctor. Honestly, I'm with the lovely but wildly eccentric Dr P 'stay out of their clutches as much as possible darling' [whilst kissing hand] 
Graves disease doesnt just attack thyroid so even if you have your thyroid removed, the Graves disease stays. Hashimotos gives up once the thyroid has gone.
Xx
Quite agree, Galathea. I had graves' from age 13, and I am now 71!
Still have Graves' antibodies, the little devils. In fact they decided to suddenly attack my eyes a couple of years ago, and I now have drops twice daily (steroid drops to begin with, then Hylo -Care as the eyes have stabilised) and prescribed Selenium.
So, how many years do I have to live before the Graves' burns itself out? I had a subtotal thyroidectomy aged 18, the thyroid grew again so I had a total thyroidectomy aged 37.
Every time I feel a sudden pain in my eyes when I look up, or sideways, I panic that they are being attacked again. It is horrible.
What would life have been like without this b****y disease? Ok, I worked all my life, but what a blooming struggle it was! Plus, I do believe the evil twin who was exposed by my thyroid overactvity meant .I was unable to maintain any kind of relationship because they all left me when they experienced my thyroid rages (all, of course, except the ones who could not escape...my poor, long suffering family!)
Although I resent having lost my thyroid as I think they should try to treat the autoimmune factor, I am glad I can now lead a reasonably normal life with a husband who thinks I am a lovely, sweet natured angel. Even if it took until I was 47 years old! Lol!
Marram, Sounds like you have TED (thyroid eye disease) not sure if I have a mild form, gritty or dry eyes, constantly need eye drops and cannot read very long without taking a break, plus they ache too. Your thoughts?
Do you have Graves' or Hashis? Hashis can cause dry eyes, and it can get very bad, and need lubricating drops to,prevent cornea damage. I think it can also mean you need to replace your glasses more often, due to eye changes.
Thyroid Eye Disease is more correctly called Graves' Eye Disease, because it is not unknown that a person can have that, but not have thyroid problems! There is a strong connection between the severity of GED and smoking.
Unfortunately, guess what, I had the thyroid AND the eye disease! I never smoked, but both my parents did, so, second hand smoke might have been a facotor, perhaps. When I was young, my eyes were like frogs eyes. Think Marty Feldman. I still have one eye wider than the other, but I never think about it any more. Too many years, and water, under the bridge....
Hi Marram, You have got me thinking now. I was born with congenital hypothyroidism with a whole rake of problems, most of them developed after the age of 32 when one doctor dropped me to 75 mcg from 32 years of being on 200 mcg. Anyway, to cut a long story short, over the last 22 years my dose has increased and at the highest I was 250 mcg. During that time, I did experience a lot of burning in my eyes, sensitive to sunlight too. Both the GP and optician said it was dry eye. I have never excepted that.
Recently my T4 dose has been decreasing as I was over prescribed, I am now (ha ha) back to what I call my natural and normal dose of 200 mcg plus (soon to finance myself) 20 mcg of Lithyronine T3. What I am asking, is when you say you felt it was attacking your eyes, was the burning sensation similar to what you were experiencing? However, since my dose has decreased, I have not had or experienced that problem. I just wondered if the higher dose, was too much and my eyes were suffering because of it??
Both my parents smoked and I was a grade one passive smoker. I am now 54 going through a later than average menopause. I also get very irritable and short tempered but I can control my rage so to speak. When my parents used to say about my irritability, I would say, "I have thyroid problems, what's your excuse lol" Most of my frustration was because people did not understand but were ready to pre judge me
JOLLYDOLLYI believe we're almost all suffering that at times nobody understands, inc the doctors. Which makes it worse...
it certainly does make it worse. I just love it when they try and tell you what you are feeling and experiencing and in their opinion as they are medically trained, you are this or that or other. After all they have the degree! Oh did I mention, I am cynical too 
Don't have either graves or hashis, going by my blood count on antibodies, but have had the eye problem 12-15yrs before diagnosed hypothyroid, yet the doctor at the time never diagnosed TED .
I think we all ought to get medical research pay, seeing as we're doing most of their work in this area... 20K a year
It's thought that a vitamin A deficiency causes dry eyes. Often we don't get all the nutrients we need.
There's also Vit D being low too. But in our cases IE thyroid related I think it's also being under treated too, or at least how it feels, may be wrong...
Yes, vitamin D a big one but some of us have a problem bringing levels up. Have you read this?
The conversion of beta carotene into vitamin A is dependent on thyroid hormone. In a low thyroid state, conversion stagnates and beta carotene builds up, causing a yellow tint in palmar and plantar surfaces. The lack of immune-boosting vitamin A may lead to chronic respiratory, nasal, pharyngeal and ear infections.
Roadrunnergreg Add in sensitivity to bright light and that sounds just like me.
Yes a sensitivity to light is a big one too for some people, me inc...
I am not a doctor but I have joined a group on Facebook that supports people with thyroid problems. It's called FTPO-thyroid issues, (FTPO = for the patient only) with several spinoff groups for graves and Hashimoto's. They are a good source of knowledge and are based on a book called STTM-Stop the Thyroid Maddness. I would recommend joining the group and getting the book. Good luck.
Anyone here been off beta blockers, then back on them for hyper? I'm going on 2 weeks Saturday that I haven't took a pill for fast heart. I don't want to throw them away, just in case something comes up with a change on my TSH. I'm only taking 1/2 of the 5mg of Methimazole once a day.
Have you stopped the betablockers or the doctor? Betablockers protect the heart and lower high blood pressure but they also slow down T4 to T3 conversion. Assuming you are on Betablockers and the Methimazole for Graves? In which case a doctor should NOT be monitoring you by the TSH, as you will have TSH Receptor antibodies, (TRAB), which suppress the TSH - the feedback loop is broken, this is how you get hyper in the first place. Some people can have their thyroid removed and be vastly under medicated and still have zero TSH. You should be titrated by the FT3.
It is possible to control Graves once stable with a very low dose of anti thyroid drugs (some people can even manage on 2.5mg once a week) but not until you are stable. Anti thyroid drugs (ATDs) slow down the thyroid, but they also tamp down antibodies.
BTW docs are obsessed by 'remission' and whip people off drugs far too quickly, and then they relapse and then patients are told their only option is surgery or RAI. This is not true, there is no reason you can't stay on very low dose ATDs for years and years, provided you are stable, and your liver enzymes are normal.
x
She had told me I didn't need to take the beta blockers, but she was wrong like almost 3 weeks ago. Then I tried it almost two weeks ago and haven't had my heart race at all. She said my thyroid is perfect 4 days ago by phone cause of the blood results on my Thyroid, just to take iron cause I was low on that. I forgot to ask for the result on my TSH since she sounded excited. Just wanted to know about saving them pills just in case. I don't see my Specialist again till the 10 th of this month.
Hiya
Yes get copies of your results, and keep a file and keep a note of what dose you were on when the blood was drawn. Iron is very important but NHS prescription iron is usually really hard on the gut and you might want to investigate getting a gentle iron that doesn't wreck your insides. If you are low on iron you are probably low on B12, Vit D, folate as well ...
Yes keep the pills. Graves is caused by antibody attacks on the thyroid, this is caused by your immune system, the victim is the thyroid, it's not the cause. I was taken off drugs far too quickly and relapsed and it was very unpleasant ...
Be prepared for your specialist to wobble on about remission or to talk about irreversible solutions ... there is no cure for Graves, removing or nuking the thyroid won't cure it, just remove on of it's attack sites. This is sometimes necessary in very acute cases (with risk of thyroid storm) but if you are stable and you feel OK, then there is no reason why you cannot stay on very, very low dose ATDs for a long time.
You might find this helpful elaine-moore.com/Articles/G...
x
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