Hi Nathalie!

I am familiar with Hashitoxicosis to the extent of how it presents in labs and symptoms. We have several members on one of the other thyroid forums I participate on who are dealing with it and I am in close contact with one of those members who recently started the treatment protocol mention below. It's one tough disease.

The most common manifestation of Hashitoxicosis is the patient having "normal" but hypo-for-the-patient labs and measurable TSI (but usually less than the level considered positive and always higher than < 2% healthy people have)

Clinically, the patient suffers with both hypo and hyper symptoms. The hyper symptoms usually cycle....over the course of a few days or sometimes not for a few months.

Hashitoxicosis is pretty rare and it seems most doctors aren't aware of it.

Here's a link to a personal story that describes the Hashitoxicosis experience as many Hx thyroid forum members have described it:

http://www.thyroidboards.com/hashitoxicosis/

Now, I suspect the author of this story either didn't know about the appropriate treatment for Hashitoxicosis or his doctors weren't aware of it.

However, Block and Replace Therapy is the standard protocol. This involves the patient taking a small dose of anti-thyroid drug (5mcg Tapazole/methimazole or 50mg PTU) which not only blocks the production of thyroid hormone but, more importantly, has an immunosuppressive effect on those problematic TSI antibodies.

Then, to prevent hypothyroidism, the patient also takes whatever thyroid hormone replacement dose is necessary.

There's not too much information out there about Hashitoxicosis.

Elaine Moore wrote these articles (linked oldest to most recent):

http://www.thyroid-disease.org.uk/smf/index.php?topic=2466.0;wap2

http://www.elaine-moore.com/MyArticles/SubclinicalOtherThyroidDisorders/Hashitoxicosis/tabid/77/Default.aspx

http://elaine-moore.suite101.com/hashitoxicosis-update-a121050

And, it's only quite recently that she discusses BRT as a treatment option.

Obviously, Elaine Moore is once again one of the best resources for information.

Hi again, Carol,

Thanks for your answer. Those 2 articles are the ones I found my self too. It's hard to find a medical back-up, like you say not much out there.

My problem that seems to be getting back at me is that my TSI was only done 3 months into MMI usage. And it came back as " less than 80" with people usually being symptomatic at more than 120. But "less than" could mean anything, so i still do not know if I have the TSI antibodies. My TGi were negative but my TPO were 514 which is very elevated. Back when I was diagnosed with Hashi's, they soly did that on my TSH. And I did not know any better. Unless now. Also then, I felt it was so easy to medicate me properly. Every so often I would go hyper and we reduced my Levoxyl untill I was fine after 1,5 years and in remission.

So now I started last February with Hyper symptoms. My TSH was low but by the time they started to check my FT3 and 4 it was on the very high end of normal range but I felt horrible! Even when on MMI my TSH continued to drop and my FT's stayed highish.

from there on it has been a rollercoaster ride but the trend has been lowering MMI while feeling awesome on lowe-normal numbers until middle of November I weaned completely and have increasingly feeling bad. I did one set of labs which showed "low-normal" for me but where I always have felt very well. So with help from the Grave's girls, I sort of decided to let it be for a while and check it at the end of January again.

It is very hard to decern for me if I have hyPER or HyPO symptoms. It seems that I am very sensitive to fluctutations but they sort of give me the same problems: Bad anxiety, sleepless, concentration loss palpitations. My heartrate and BP is the same no matter when I am hyper or hyPO always around 90/55 HR 64 BPM just have these palps.

Currently I fluxuate with my anxiety from: "I will just ignore it and do my thing" and "If you look at me I am going to explode".

I am glad to hear that you also know about the fluctuations between hyper and hypo. I KNOW it is my thyroid, but it is so hard to think straight sometimes and not just go and get a mouthful of antidepressants. But this is really not me. I am very happy and positive, I have this core happiness and gratefulness for all that comes to my life. I KNOW this is not a psychiatric cause of anxiety.

I want to get it solved. I am pretty desparate.

Thanks for listening. I really hope I can find out what it exactly is I have and get healed.

It's not uncommon for people to start their thyroid disease journey with hyPOthyroidism and then develop hyPERthyroidism....or, vice versa.

TPOab's are seen in both Hashi's and Graves' and are truly markers of thyroid inflammation so, those results aren't too helpful in determining just what is going on with you.

And, the fact that your TSH stayed suppressed while on MMI is to be expected.

While you might have had lower levels of TSI, that doesn't mean they weren't high enough to cause you to be hyperthyroid. If you were hyperthyroid, you were hyperthyroid.

In the course of 4+ years of participation on several thyroid forums, I've come across many people who had "negative" TSI results but, were hyperthyroid.

Everyone's response to antibody titers is different.

Now, I'm sure you know TSI suppresses TSH. And, there is another form of Graves' antibodies called TBII that also suppress TSH.

TBII are blocking antibodies that can either negate the effects of TSI and make the patient euthyroid, with suppressed TSH *or* since the blocking antibodies are SO powerful, it's not uncommon for them to completely override the effects of TSI and make the patient hypo, with suppressed TSH.

I see some merit in you getting a complete antibody profile at this time along with those new labs.

I can't say I'm convinced you are dealing with Hashitoxicosis even though you feel your symptoms are confusing.

You "just" might not be at your optimal levels and could very well be like one of my long-time thyroid buds who needs both her FreeT4/T3 levels to be "spot on" if she is to be without symptoms.

I'm sure you realize it would have been helpful to know what types of FreeT4/T3 levels you probably had when you were feeling great on Levoxyl.

Also, by working together, we might be able to identify whether or not your levels are hyper/hypo.

Unfortunately, anxiety and palps can be either hyper or hypo.

Qualifying your sleeplessness might help. Do you have trouble falling asleep? Or, do you wake several times during the night and have trouble falling back asleep?

And, you might want to review this hypothyroidism symptoms list from thyroid textbook "The Thyroid and Its Diseases":

Fatigue
Swelling of eyelids
Emotional instability
Lethargy

Dry skin
Choking sensation
Low endurance
Dry mucous membranes

Fineness of hair
Slow speech
Constipation
Hair loss

Slow thinking
Weight gain unexplainably
Blueness of skin
Poor memory

Paleness of lips
Dry, thick, scaling skin
Poor concentration
Shortness of breath

Dry, coarse, brittle hair
Depression
Swelling
Paleness of skin

Nervousness
Hoarseness
Puffy skin
Anxiety

Loss of appetite
Puffy face or eyelids
Worrying
Prolonged menstrual bleeding

Swelling of ankles
Easy emotional upset
Heavy menstrual bleeding
Coarse skin

Obsessive thinking
Painful menstruation
Brittle or thin nails
Low motivation

Low sex drive
Dry ridges down nails
Dizziness
Difficulty in swallowing

Sensation of cold
Hearing loss
Weakness
Cold skin

Rapid heart rate
Vague body aches & pains
Decreased sweating
Pounding heart beat

Muscle pain
Heat intolerance
Slow pulse rate
Joint pain

Non-restful sleep/interrupted sleep
Pain at front of chest
Numbness or tingling
Insomnia

Poor vision
Protrusion of one or both eyeballs
Thick tongue
Weight loss or gain

Sparse eyebrows/loss of outer third of eyebrows
Swelling of face
Wasting of tongue
Gas/bloating

And, this is a comprehensive list of hyper symptoms as compiled from various medical references and the experiences of thyroid forum members (it's from my first ever-thyroid forum that is exclusively devoted to Graves'):

HYPER SYMPTOMS
Anxiety
Bladder problems - increased urination or polyuria
Blotchy itchy patches without rash - Pretibial myxedema, hives
Brisk reflexes

Congestive heart failure, atrial fibrillation, cardiac arrhythmias

Depression
Difficulty breathing, rapid shallow breathing, shortness of breath
Dizziness

Emotional disturbances, emotional lability
Eye changes, proptosis

Goiter
Graying hair, premature graying

Hair and nail changes, increased growth
Hair loss
Headaches
Heartburn
Heat Intolerance
High systolic blood pressure

Hyper brain, trouble concentrating or comprehending

Hyperdefecation - up to 8 movements a day, steatorrhea (increased stool fat due to malabsorption)

Hyper immune system and less of a susceptibility to other diseases,

Hyperpigmentation of skin

Inappropriate feelings of rage
Increased heart rate, palpitations
Increased perspiration
Increased digestive motility
Infertility, impaired fertility
Increased appetite
Increased bone resporption, bone loss
Increased drug metabolism
Insomnia, sleep disturbances
Irritabilty and Agitation
Irritable leg syndrome due to nutrient deficiencies patient may describe bouncy legs.

Loss of muscle mass
Low cholesterol level which rises with treatment
Lowered stamina, weakness

Menstrual Cycle Changes - Absence of flow when normally expected is called
Amenorrhea. Scanty flow is known as Oligomenorrhea
Mood swings
Muscle weakness and fatigue

Nail margins uneven, nails split, nails weak, cracking
Nausea, vomiting
Nutrient deficiencies

Onycholysis (separation of nail from its bed)
Overactive libido is more common in hyper, change in libido

Panic

Restlessness

Skin tags

Tremors, increased movement (hyperkinesis)
Tremors of hands, lips, tongue

Vitiligo (patchy loss of pigmentation in skin)

Weakness in muscles of shoulder girdle and large muscles of the thighs

Weight loss or gain (rapid)

And, for whatever it's worth, you might want to review the list of hypo symptoms the site also created:

HYPO SYMPTOMS ONLY
Abdominal pain and distention
Anemia
Aversion to cold (Cold intolerance)

Brain Function problems which include:
Confusion,
Disorientation,
Mental fog,
Memory loss - Brain fog

Carpal tunnel syndrome
Constipation the more hypo we become, the more severe this becomes

Decreased body temperature
Depression which worse if patient moves into myxedema coma
Dry coarse skin and hair

Edema
Emotional lability
Enlarged muscle fibers with muscle weakness (Hoffman's syndrome)
Eyebrows stop growing,

Fatigue
Feeling of being overwhelmed

Goiter

Headache
Hearing loss, deafness
Heavy menses & cramping
High cholesterol and lipid levels
Hoarse voice

Impaired blood clotting
Impaired digestion
Impaired skeletal growth

Increased capillary fragility (bruising)
Increased creatine phosphokinase (CPK) level
Increased diastolic blood pressure
Increased fertility problems
Increased menstrual cycle

Irregular heart rate (bradycardia)

Joint pain
Lack of motivation
Loss of initiative

Muscle pain
Myxedema (waterlogged appearance of skin) puffy eyes, face, hands, feet

Nails changes, nails split, break, get thickened
Nasal stuffiness, dry throat
Nocturnal paresthesia (hands or legs falling asleep)
Nutrient deficiencies

Palpitations

Severe hair loss
Severe weight gain even when not eating much
Sinus problems and or infections
Sleep apnea
Sleepiness, lethargy, insomnia, interupted sleep
Slow speech

Thickened, dry tongue,( dry mouth)



EYE DISEASE SYPTOMS
Bad night vision

Blurring of vision
Bulging eyes

Double vision
Dry eyes

Eyestrain

Inability to close eyes to sleep (Eye lids dont close fully or remain fully closed through he night?)

Lid lag

Sensitive to light, even indoors
Staring
Swelling of eyes
Tearing

Ulceration


I see merit in you listing every single symptom you currently deal with and note the frequency.....and then, see how things stack up.

If you have accurate symptoms history from earlier years, I see merit in doing the same thing for those periods of time.

Let's see where this takes you.....

nursenat:

Oh good, you came over here. I had this problem for 20+ years with undiagnosed hypOthyroid symptoms. It was often mild at times. Then I have been hypER since 2000, at the birth of my last child.

I did have, finally, higher than normal TSI. I don't have any idea what kind of TSI I had prior or even how my Free Ts were doing since I only had the TSH checked (which was the wrong thing to do back then).

I never did have where I have suffered one month (or even days) hypO, thing swing next month hypER, or back and forth consistently. This would have driven me mad, that's for sure...!

Block and replace definitely is the way to go with this. If this is what is happening with you.

{{{hugs}}}

P.S. Maybe I should answer you over at the GD board as well...? :-)

How were you diagnosed with GD instead of Hashi's? Did they do a scan? or Antibodies? On what grounds did they say you have Graves? You're way smart, and have been questioning the Graves Dx for a long time. Chances are you could be right. Look into it, and let me know what you find. I hope you start to feel better soon. I'm right there riding the hypo wave with you buddy! I hope today finds you feeling better Nat! Have a great new year!

CD, thanks for your advice. I am not sure either if I am dealing with Hashitoxicosis, I am just trying to find answers.

Your list I found before too. Ofcourse I have a lot of the symptoms on there, LOL, no big surprise. Both hyper and hypo, even at the same time. But with a list that extensive one is bound to have a few symptoms, no matter what. For example that nail thing ... I have had that my whole life, so does my 3 year old son.

About the sleeping: Most of the time at the moment I fall asleep just fine but wake up after 2 hours or so, totally anxious and not able to fall a sleep. I go in and out the bed for a few hours but just can not sleep. Some days I am just to wound up to fall a sleep.

Things have gotten worse over the last few days and I did go in today to my labs.It's only been a month but I have a hard time finding words and finishing sentences, I am about to explode all the time now and stay away from friends. I do not feel sleepy and even feel a drive to do a bunch of things but my brain just can't keep up.

I will see what the labs say tomorrow. I it shows "normal" numbers again, I am going to find a different endo. who can put all the numbers together and make some sence.

MagLady, when I just got diagnosed she just said I had Grave's and told me most lilkely I needed RAI in a few weeks. Only later when I started to ask some hardcore questions, backed up with some knowledge she changed her mind and said that I have AITD. Well ... how is that helping me? It would be helpfull if I know what antibodies I got.

Anyway, the sun is shining today, I am going outside with my husband and son and enjoy the day.