Possible Hyperthyroidism/graves--hashimotos thy... - Thyroid UK

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Possible Hyperthyroidism/graves--hashimotos thyroiditis

31 Replies

Hello,

Wast told a week ago by a doctor in vietnam i have hyperthyroidism/graves-age 39.

I was given thyrozon 10 mg

and the other was dorocardyl 40 mg.

I had TSH 0.102 low and TSH receptor antibody 3.89 High.

Anti thyrogobulin was 39.84

anti microsomal was 13.10

A second doctor said thinks could be hashimotos, and someone said possible to have both.

I wondered if an anti-TPO test is best to show hashimotos?

and or TRH sensitivity test?

Also last year, before it started i had worst stomach problems in thailand, 3 days in hospital and my system was flushed out and was working hard their.

I then was on a lot of meds and getting hives at the end of the day.

Later on i got very tired and felt a tight at back of neck. i got some skin diseases.

This lasted 10 months before i got a health check.

I did loose some hair, and was feeling irritable, a bit hyper.

I dont understand if someone can have graves, hyperthyroidism, how can they have hashimotos, because i am on medicine for my suspected graves and this may interact badly with hashimotos i read. and hashimotos leads to hypothyroidism so i dont understand it. They are two autoimmune diseases i believe.

I have another set of blood tests in 3 weeks with a doctor not speaking much english.

Another option of another bigger hospital but repeating a lot of tests i had and a lot more expensive.

I had an ultrasound, came out normal, no abnormalities and the man said he doubted anything wrong, and that blood test levels can be not so true.

I realy wonder the underlying causes of it and worry because i stress a lot generally about things i cant do much about in society. Just general unhappiness about society which leads to stress. I wonder if medication is right way and if a good rest might be better. I am taking vitamin D tablets now.

Any ideas, suggestions welcome. My main worries are on the right tests to be done, and if the tablets i am on bring my levels down, and i stopped taking the tablets, would it just mean my levels go back up. will i ever stop taking tablets.

My doctor said 30 percent chance in 2 and a half years i might loose the disease.

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31 Replies
Silver_Fairy profile image
Silver_Fairy

If you have Graves you never 'lose' the disease, even if you have your thyroid removed.

You need TSH, FT3, FT4,

For Graves - TSI Trab and TPO

For Hashi - TPO or Tgab (latter not as good)

If you have had loose bowel problems you probably could do with B12 and Iron testing.

What were your Vit D results and what dose Vit D are you taking?

in reply to Silver_Fairy

Thank you for replying.

My T3 was 1.33

My T4 was 1.01

TSH 0.102

I am taking special omega - 3 in combination with vitamin K2 and D3

D3-10,7 +20%

K2- 15 + 20%

its supplement from momega.

I had loose bowels on and off for a year.

I didnt have a vitamin D test. The doctor here just said to get a TSH receptor antibody test which was 3.89. Nothing else, no diet advise.

I am thinking to try a bigger hospital but its been a holiday here.

Oh, so there are good tests to show graves and hashimotos.

The hospital i emailed with better english said they think hashimoto thyroiditis.

Its just a little hard because i didnt budget a lot of money for these things.

Another option is to go back UK, but I didnt really like it their and was happier away.

I also heard from friends the NHS isnt so good now.

Silver_Fairy profile image
Silver_Fairy in reply to

Do you have ranges (numbers in brackets) for the test results, as they are nothing like I have ever seen?

If you are on antithyroid medication you should really be being tested at least every 8 weeks, and dose adjusted as and when necessary. Or there is a danger of becoming over medicated and having hypo symptoms.

Loose bowels can be a Graves/hyper symptom. Or is there a problem with the quality of water where you are? Or parasites.

You really should have a Vit D test before supplementing, as it is stored in the body.

The NHS is underfunded but it's not the NHS that's the problem, it's GP and Specialist training in certain areas, endocrinology being one.

in reply to Silver_Fairy

Hi,

sorry about not adding the numbers in brackets.

T3 (ECLIA-ROCHE) (0.84-2.02) 1.33 ng/ml

FT4 (ECLIA-ROCHE) (0.932-1.71) 1.01 ng/ml

TSH (ECLIA-ROCHE) (0.270-4.2) 0.102 Uiu/ML

Bear in mind its also in Vietnam so maybe something slightly different.

TSH receptor antibody (TRAb) 3.89 (<1.22 IU/L)

Anti thyroglobulin (ROCHE) 39.84 (<115 UI/mL)

Anti microsomal (TPOAb) (ROCHE) 13.10 (<34UI/mL)

The doctor said after first blood tests to repeat in 4 weeks and if my levels get more normal she will lower dose im on.

in 4 weeks the tests were to be done are:

1-T3

2-FT4

3-TSH

4-AntiTRAB

SGOT-SEPT

two more tests but i couldnt understand them.

Thank you

Clutter profile image
Clutter in reply to

Jimbobsquarebowels,

Anti-thyroglobulin and anti-microsomal (TPOab) are negative for Hashimoto's.

TSH Receptor antibody 3.89 confirms Graves disease.

TSH 0.102 is mildly suppressed but neither T4 1.01 nor T3 1.33 are high in range. If these results are before you took anti-thyroid drugs you had subclinical hyperthyroidism and it may have been better to monitor levels and delay taking anti-thyroid drugs.

In the UK hyperthyroid patients arediagnosed when TSH is suppressed <0.1 and FT4 and/or FT3 are over range. Patients are expected to take anti-thyroid drugs for 12-18 months to regulate their thyroid gland and may then wean off to try for remission. Remission in Graves disease patients is permanent in less than 50% of the time. If remission fails options are to resume anti-thyroid drugs, have radioactive iodine to ablate the thyroid gland or thyroidectomy to remove it. The last two options will cause hypothyroidism.

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in reply to Clutter

Hello,

Would you say that i should stop taking anti thyroid drugs?

Yes, these results are before the drugs.I have been on the drugs about a week.

What would be the outcome if i didnt take the drugs? a possible imrpovement?

Also if i stopped them now and just took blood tests, would that be better?

Thank you for the information.

Clutter profile image
Clutter in reply to

Jimbobsquarebowels,

I'm not advising you stop them but I think it might be worth getting a second opinion whether to continue taking them.

If you are hyperthyroid and stop taking them FT4 and/or FT3 will rise and TSH will drop.

in reply to Clutter

So, its unlikely that they these drugs will do anymore damage than whats already done.

Although I was under a lot of stress this year and ive stopped all the negative things almost that I was under. I cant be sure then how much of this has helped while taking the drugs.

The doctor said if these these levels improve, she will lower the dose of the medicine,

I dont know the end goal really.

Is it to just monitor every 4 to 8 weeks and as long as its normalising, keep reducing medicine?

If when it did normalise, is this meaning that i am no longer dependent on drugs?

I am just wondering as it seems without drugs your saying my levels will just get worse.

I am tempted to just stop and see what the next test shows. The ultrasound man said my thyroid was normal and didnt think the blood tests meant anything because sometimes tests their can be a little bit negative.

I did think to get the test done in a bigger hospital.

Also remission is meaning it goes but isnt cured? its just in limbo and could return if stressed enough in the future?

I would prefer if i have to take drugs, to do this than have operations or the other options because I am hoping that doctors are looking for possible cures for these diseases.

I mean they have become an epidemic so you would assume someone is looking.

Seems that if its not a moral cause anymore, then people taking sick days is enough of one.

Clutter profile image
Clutter in reply to

Jimbobsquarebowels,

My advice is to show your thyroid results to another doctor for a second opinion. T4 and T3 are unequivocally euthyroid (normal) so I think it may have been premature to prescribe anti-thyroid drugs when TSH is so mildly suppressed.

I'm not saying your thyroid levels will get worse without the drugs. I don't know. I said, if you are hyperthyroid and need the drugs, T4 and T3 will rise and TSH will drop lower.

Remission means having euthyroid levels for 12 months after weaning off anti-thyroid drugs. If remission fails and you were comfortable on the anti-thyroid drugs you can resume taking them.

Graves is an autoimmune disease and is never cured, even if the thyroid is removed. Graves can go dormant or it can go on to attack other organs, usually the eyes.

in reply to Clutter

Thank you, Clutter.

I am thinking to not go to this small laboratory for the next blood tests, but go bigger hospital for a new set.

I will just use the rest of these drugs as it sounds like they will improve my levels say regardless of having any particular autoimmune disorder so nothing to loose by taking them.

Clutter profile image
Clutter in reply to

Jimbobsquarebowels,

It's not the small lab's blood tests I was querying but the doctor's interpretation of them.

The anti-thyroid drugs won't improve your thyroid levels, they will reduce them. If you start feeling fatigued and gaining weight it will be because thyroid levels have dropped.

in reply to Clutter

I think i will stop the medicine, and either go to the hospital, a bigger one with same tests or get another new set done. See what those tests show.

I think a lot wont change in that time. I can then speak to someone who can talk more english their hopefully. Certainly i am doing everything differently to what i was doing.

I can feel slow improvements such as the stiffness in my body.

I will ask for the following tests:

TSH, FT3, FT4,

For Graves - TSI Trab and TPO

For Hashi - TPO or Tgab

I must say after all the information ive been reading and peoples struggles with these different autimmune diseases, I am a little confused by it all because it seems to me that doctors are treating symptoms but less so looking behind the symptoms at peoples individual lives and i am also wondering what the future holds in terms of are they looking at actual cures for these ailments... It seems in 2018 that we would be there or there abouts for diseases that have been around a long time. I am dissapointed more for everyone with these illnesses.

Clutter profile image
Clutter in reply to

Jimbobsquarebowels,

You've already had TPO and TgAb tested and they were negative so that rules out Hashimoto's. TSH Receptor ab was positive for Graves.

There's no treatment for autoimmune disease so doctors treat the conditions autoimmune disesease cause and the symptoms.

in reply to Clutter

Yes, I understand. As I am due some more blood tests in a few weeks, I will get to see what my levels are again. I was thinking to stop the medicine and see how things are now that I am in a less stressful situation.

If I continue the medicine it will maybe show an improvement but it wont show if thats because i improved my situation.

I can then start again medicine if my test results are negative.

helvella profile image
helvellaAdministratorThyroid UK in reply to Clutter

There are both stimulating and blocking TSH Receptor antibodies - with differing impacts.

Not all tests are able to distinguish between them.

in reply to helvella

Hello,

Is that hopeful news?

helvella profile image
helvellaAdministratorThyroid UK in reply to

It is just cautionary about interpretation of TSH Receptor antibody tests.

in reply to helvella

I am thinking to go to a bigger hospital and be re-tested.

To get a second opinion. it seems to me maybe pointless paying 90 pounds for more tests in a small laboratory with a doctor who has little english. Better to just go with one who can.

If they find nothing, then they can maybe direct me as to why I am feeling so tired.

in reply to helvella

Hello helvella,

I would like to ask you if there are any other possibles in the test i had apart from graves?

if it could be something else.

i understand ive had some symptoms of this minus the tremors in hands.

I also heard its not curable but maybe 50 percent can get remission of this disease.

This just means it is living underground and may come back if overstressed again?

It seems like it has its side effects in all the organs and eyes. I heard from a nurse the medication also isnt without its side effects to such as liver.

I am making an appointment to the bigger hospital ASAP as they do have someone speaking some english.

it seems like pointless going back to the uk, when the cold irritates my arthritis and their is so many people living their now due to it being financial capital of europe. one reason i moved away. I guess some of us have to jump ship the more people who come.

i am just coming to terms with this more so because if its graves, i cant move around from country to country so easily without the right medicine.

in reply to Silver_Fairy

I forgot to ask something.

I should definately get a vitamin D test yes?

Also I heard probiotics are good. The best maybe being kefir.

However the only ones ive been able to get is cows milk kefir. Is this okay for people with thyroid problems?

in reply to Silver_Fairy

Also, I dont think water that great here. I am drinking best I can find.

la vie water from nestle. I think my over use of coffee was a prolem and i think many chemicals in it here too.

I wondered to try fruits like pineapple, kiwi as i heard has antiinflammatory properties.

Silver_Fairy profile image
Silver_Fairy in reply to

A general healthy diet ie low/no sugar, no processed foods, good fats, med amount of protein, med/low carbs.

Stress is bad for Graves sufferers and dealing with stress becomes difficult too. Lots of rest/sleep/meditation.

Do they sell fermented foods? Kimchi? Good for the gut.

in reply to Silver_Fairy

Thank you, yes, i did notice kimchi, but it has i think a lot of chile or something spicy in it and i thought it might irritate the thyroid?

im trying to eat miso, gouda cheese-some royal jelly and natural honey every day for B vitamins and helping nervous system.

I do suffer with depression and thats why i didnt get a health check because thought tiredness from that.

I cut out my sugar, the best meat i can get here without having my own kitchen is fried chicken. i eat that with fried mushrooms, tomatoe, baked beans.

I usually have an avocado milk shake.

I wanted to have pineapple but it said online to avoid it.

Now i am getting more sleep. I will try some meditation.

I was eating chickpeas in cans, but I think have a lot of salt in the water.

its really hard to find many organic things. I drink coconut milk. Eat walnuts.

Silver_Fairy profile image
Silver_Fairy

Sounds like youre doing the best you can. Not sure why you cant have pineapple, it's got good things in?

in reply to Silver_Fairy

I found some kimchi and it said one of the worlds healthiest foods on the outside. I decided to buy some. Just remember out of all the reading i was doing, that i think pineapples had something inside them that might not be good for graves but i couldnt find where i read this.

I love yogurts and kefir would be nice. hope cows milk kefir is okay.

Yes, I am trying to reverse my diet as it had a lot of foods like pizza, pasta, and a lot of coffee in it.

Silver_Fairy profile image
Silver_Fairy in reply to

Pineapple has bromelain in, an enzyme that helps break down protein which is a good thing. Maybe if you were to eat too much, as of most foods, it would have a detrimental effect.

Do they sell Kombucha? Its a fermented black or green tea drink.

in reply to Silver_Fairy

I was drinking a lot of green tea, because i stopped drinking alcohol and coffee 7 months ago. I think their was a bit of caffein in it because i was drinking a lot.

I have some social anxiety and depression so its quite hard to keep my stress levels down.

I was looking into a drug called welbutrin, as an option as well as meditation.

I did try to eat some pineapple here as i also heard it was good for inflammation and i have arthritis in my hip.

I wanted to try to find that you suggested, kombucha because it seems to be very healthy.

I didnt find it yet.

I am trying to eat more soups. I like vegetables but most things seem to be fried here, not grilled and a lot of MSG. I just like the place though so its difficult to leave.

Silver_Fairy profile image
Silver_Fairy in reply to

Anxiety is a Graves/hyper symptom. Could you try meditation? When I had active Graves I didnt deal well with stress, but I was fortunate not to suffer anxiety, it a common symptom.

Green tea does contain caffeine, so limit the amount. There's also a water kefir if you can find it.

MSG = bad, but if you cannot cook from scratch then you'll have to just try and limit the foods containing it.

in reply to Silver_Fairy

I am feeling very stressed at the moment. More so as graves would put too much on my shoulders. I already had anxiety all my life and depression plus both hips are bad.

My family say to keep taking the tablets, but what if the next test is just an indication of tablets and not the rest and change in diet....

I also have a time limit on how long i can stay where i am. I feel i need proper rest .

i dont feel the answer is going back to the UK. it would be a lot more expensive for me and i dont believe there are any benefits could be had from this idea.

My conditions are not recognised so i wouldnt have help of benefits and all the jobs i did their, sales, supermarket work after i injured my hip worse doing conservation work made things more stressful. Workers on drugs, doign eratic things. The big competition between workers all made me more stressed. No sense of loyalty or giving someone peace if they are shy and not too talkative. too much office gossip. I didnt fare well in uk.

I could only find milk kefir. its not that graves alone was the worst feeling. its on top of the other problems i already have. I had these all my life and was hoping i would have a better life when i got older. Maybe somethings would be found like new cartilage for hips and better anxiety drugs to make me forget about the crowded places and pushy people.

I cant afford to live in a more peaceful place in the uk, which is why i tried to stay where i am for now. Gives a little peace.

Silver_Fairy profile image
Silver_Fairy in reply to

The Graves may have been with you a long while, causing some of the anxiety, and never diagnosed.

The only advantage of returning to the UK is that the NHS is free and if you would be able to have tests, scans etc, see a specialist.

Wouldnt really like to advise about the medication, I havent even heard of either of them! But if you have any heart symptoms youre best off taking something. Depending how bad any other symptoms are diet alone may not make enough of a difference. Being in a state of hyperness wont do your stress levels any good, but only you can say how bad your symptoms are.

in reply to Silver_Fairy

I have been to the big hospital today and talked to an endocrinologist their who could speak English. He seemed suspicious of the test results after a physical check and ran some more blood tests. He didnt want to run the antibody receptor test because the first test he was satisfied with. I have a follow up appoinment in 3 weeks time, where he said i could have that test if still wanted.

Free T3 2.13 pg/ml (1.71-3.71)

TSH 0.47 uU/mL (0.35-4.94)

Free T4 1.07 ng/dl ( 0.70-1.48)

From what he told me, he said he didnt think I had a thyroid problem or graves, hashimoto. He said that he thinks being 2 weeks on the drugs i was taking wasnt enough to improve these levels as much as they have been. I asked him twice about this. Also he said for me to stop taking the medicine.

He said that the test i took today which was more expensive, was standard laboratory and not to trust as much the smaller one.

previous one was:

T3 (ECLIA-ROCHE) (0.84-2.02) 1.33 ng/ml

FT4 (ECLIA-ROCHE) (0.932-1.71) 1.01 ng/ml

TSH (ECLIA-ROCHE) (0.270-4.2) 0.102 Uiu/ML

My question is, which levels were considered abnormal in the first test?

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