Forgot to mention a few symptoms that are contradictory I think:
Loss of weight, lost 6 kgs in 6 months
Loss of hair
loss of muscles
Irregular heartbeat every now and then
Tingling sensation in legs or hands
Constantly extremely tired but unable to sleep properly
Had constipation or diarrhea a lot last year (this is much better now and back to normal)
Hope this helps.
Can you please post the actual results of your Free T4 and Free T3 tests, along with the reference ranges listed on the lab reports? Being able to see the actual results will help us see how high the Free T4 actually is... Just because it's in range and "rising" doesn't mean you can't still be hypo...
Also, please post the antibody test(s) you had done and the results and reference ranges.
It takes 4-6 weeks for a T4 medication, like levothyroxine to reach full effect in your blood, and it's not unusual for one to feel worse before feeling better when starting on a replacement hormone medication.
The active ingredient in levothyroxine is identical to the hormone your body would make if it could, so it's unlikely you reacted to the medication; however, some people do react to fillers/binders or dyes. It's also possible that your doctor started you out on too high a dosage. Often, it's best to start at a very low dosage and work up to the correct dosage, slowly. It takes longer to get there, but there's less chance of the type reaction you had.
As far as the antibodies, there are 2 lines of thought on that... one is that there's nothing you can do about them except wait for them to "kill" your thyroid so it can no longer produce hormones so you're completely dependent on the medication. The other line (and some studies are showing) that you can reduce antibody counts by changing diet and starting on some supplements. The thing is that simply reducing the antibody count still leaves some left to continue destroying the thyroid, so unless one can eliminate all of them, you're not gaining a lot, because no one has ever determined just how many antibodies it takes to destroy a thyroid. It just may take longer if you have only 100 vs 1000... For some of us, it was easier to adjust medication once the thyroid no longer produced than it was prior.
What adrenal tests did you have done and what were the results? Also, what tests were done for the hypothalamus and their results? Be sure to post reference ranges with all results...
My TPOAb (thyroid peroxidase antibodies) rose from 470 to 1900 when I was hyperthyroid. My stomach acid depleted and my antioxidant levels were low. Antioxidants fight free radicals (reactive oxygen species). Just to add, when my mother and I started eating brazil nuts (high in selenium) our TPOAb dropped 80 IU.
Medscape - Selenium and the Thyroid Gland...
"Most authors attribute the effect of supplementation on the immune system to the regulation of the production of reactive oxygen species and their metabolites. In patients with Hashimoto's disease and in pregnant women with anti-TPO antibodies, selenium supplementation decreases anti-thyroid antibody levels and improves the ultrasound structure of the thyroid gland."
An excerpt from the article "What thyroid patients should know about Oxidative Stress"...
"Some Causes of oxidative stress
There are quite a few situations mentioned in articles and studies which can cause your body to be overly stressed from the results of oxidation and all the reactive oxygen species. They include, but are not limited to:
excess endurance exercising
excess weight lifting
lack of key antioxidant nutrients like Vitamin C, Vitamin E, Selenium, Magnesium and other minerals
excess radiation or sunlight
smoking (huge cause of oxidative stress)
excessive drinking or drug use
over-exposure to toxins in our air, water and foods like pesticides, chemicals, heavy metals and more
processed foods with all their artificial dyes, additives or flavorings
excess physical trauma
Graves disease aka hyperthyroidism
excess copper levels from the MTHFR defect"
One must be careful eating Brazil nuts on a daily basis, since the selenium content can vary widely, depending on where the nuts were grown, since soil content of selenium varies. You could get way too much or not enough.
One ounce of Brazil nuts contains 544 mcg selenium, which is 777% of the recommended daily value. Selenium is toxic in too high amounts.
"Randomized, controlled trials of selenium supplementation in patients with thyroid disease have had varied results."
"Additional research is needed to determine whether selenium supplements can help prevent or treat thyroid disease."
I should note that I do supplement with selenium, myself, because I was found to be deficient, and studies have also shown that selenium is necessary for the conversion of Free T4 to the usable Free T3...
You are are experiencing hypothyroid symptoms and those results are typical. Its usual to see increasing TSH numbers and also high T4 values which is mainly due to spike in TSH value.
The treatment is simple too, start on a typical levothyroxine dose or dessicated thyroid dose and recheck the TSH value after 4 weeks. If you are checking other thyroid parameters too like Free T4, Free T3 etc then you should not take levothyroxine or NDT for at least 24 hrs as then it might show false high value. Anyway checking TSH alone is only needed for finding the final dose provided you not have any pituitary issue.
Its typical to get occasional hyperthyroid symptoms especially when starting treatment but never discontinue instead you can reduce the dose and slowly increase and return to usual dose.
Also do check your Vitamin D, Vitamin B12 and Ferritin levels and make sure all in optimal ranges as deficiency in these can bring hypothyroid like symptoms.
Thank you all for your responses.
Unfortunately, I don't have all the results from the tests because some were done at the hospital and others at my gp, I have a few though. Most were given verbally so I don't have those stored anywhere.
In November my levels were:
Ft3 4,500 range 2,6 and 6,0
Ft4 12 range 10 and 26
TSH 10 range 0,27 and 4,2
Antibodies 238 range up to 34
The tests for adrenal gland, pituary gland and hypothalamus I don't have but they were all within normal range. I had that tested because I got so sick from the levo.
They did start me on the lowest dosage possible which is 25 microgram or 0,025 mg.
Yesterday I started with my 3rd type called duotab thyrox, I now take half of the lowest dosage so 12,5mcg.
So far (it's day 2, I only have a bit shaky hands) other than that it's ok.
My levels, other than my tsh, are in range so this means I don't have damage to my thyroid yet right?
It's just that my pituary gland has to produce more tsh in order for my thyroid to produce enough, right?
I just find it difficult to accept to let these antibodies wreak havoc on my thyroid and they cannot be stopped and now with these Meds we just help the thyroid and calm down the pituary gland. Why is the cause not being addressed?
Also, since I'm still subclinical, maybe there is still something that can be done before I'm full blown hashimoto?!?!
Also, my gp says that in 20% of the patients he sees with hashimoto they have to take the medication lifelong but in 80% of the cases it's temporarily.
The specialist at the hospital says the ones he sees are all lifelong on it but he sees the special cases. Most people just see the gp and never get send through to a specialist.
I'm just a loudmouth and want everything tested to be sure about my condition.
I forgot to mention that I am a 42 year old Dutch male and apparently it's not so common for males to get this.
Any help, feedback and replies are much appreciated.
Oh and I don't smoke and don't drink much or often, I'm very healthy (lifestyle wise), athletic (hence the loss of muscle and thus weight was so obvious) and I eat and drink healthy products.
Hashimoto's is kind of like being pregnant - you either are or you aren't; there's no partially or "full blown" to it...lol if you have elevated anti bodies, you have Hashimoto's...
You can have Hashimoto's for years and it's doing damage to your thyroid, long before labs, such as TSH, Free T4 and Free T3 go out of range. That doesn't mean the damage isn't being done.
As I said, there are 2 trains of thought about treating Hashimoto's - the one camp says there's nothing that can be done to stop the antibodies, and that's pretty much what conventional medicine and research backs up. The other camp says that if you change your diet to exclude gluten, dairy and soy (you should exclude soy anyway) that you can destroy the antibodies and save your thyroid. There's some science to back this up, but not a lot. This camp also says that taking certain supplements will help destroy the antibodies, as I noted above and selenium has been proven, in some studies, to reduce antibody counts, but simply reducing the count still leaves antibodies to carry on the destruction...
Personally, I'm finding that the better condition my gut is in, the better I do, even though it has nothing to do with my antibody count.
You don't have to keep having antibodies tested - at least not that close together, because they aren't going to go away that quickly...
I'm not familiar with "duotab thyrox" - does it have T3 in it?
If so, and you're feeling shaky, already on day 2, chances are, you don't need the T3...
"My levels, other than my tsh, are in range so this means I don't have damage to my thyroid yet right?
It's just that my pituary gland has to produce more tsh in order for my thyroid to produce enough, right?"
Not necessarily... As I noted, previously, damage can be taking place for years before thyroid labs actually go out of range. There will come a time when your thyroid will not "listen" to your pituitary gland and it will not produce anything, no matter how much TSH is produced. When I was diagnosed, my TSH was at 55.5 and we've had many members whose TSH was even much higher than that... My thyroid, along with others on the forum is completely "dead" and produces nothing... we are totally dependent on our daily medication.
People with Hashimoto's who have to take medication for life are the norm, those who are able to only take it temporarily, as your gp says are rare...
The info below is from the book "Your Thyroid Problems Solved" by Dr Sandra Cabot which I edited from pages 166 and 167. This book is where I first discovered studies on selenium lowering thyroid peroxidase antibodies.
Patient with Hashimoto's Thyroiditis:
The level of her T3 hormone is very low, whilst her T4 level is quite high; the high T4 is coming from her thyroxine medication. The body is not converting thyroxine (T4) into T3.
Free T3 = 1.1 pmol/L (2.5 - 6.0)
Free T4 = 23 pmol/L (8.0 - 22.0)
TSH = 2.0 mIU/L
Anti thyroglobulin antibodies = 80
Anti microsomal antibodies = 1200 (thyroid peroxidase antibodies)
New treatment: Patient prescribed T3 (brand name tertroxin) 20mcg three times a day, T4 100mcg a day, selenium (Dr Cabot recommends 200mcg daily), gluten and dairy free diet, bowel and liver detox.
Three months later:
Free T3 = 5.0 pmol/L (2.5 - 6.0)
Free T4 = 16 pmol/L (8.0 - 22.0)
TSH = 1.9mIU/L
Anti thyroglobulin antibodies = 40
Anti microsomal antibodies = 350
Thanks again for your answers.
Thank you for clearing that up, I read a lot of studies about this already, Dutch and American studies and in some it is mentioned that as long as your subclinical, it can still be reversed so that was what I was hoping for.
So subclinical is just a pre stage and there is no escaping it you say. My gp says he sees it "clear up" in most so that's strange.
I'll just have to accept it then I guess.
I already don't eat soy but I'm not willing to go gluten free.
I can try the selenium like you both mention. Will look into that.
I don't know if it has t3 in it, it just says levothyroxine.
Thyrox duotab, I'll look more into that as well and check the manufacturer.
I'm shocked by the high levels of tsh you mention, I already had weird symptoms when my tsh was 8 so I cannot imagine if it's over 50. Did you not notice anything earlier?
What is the difference between anti tpo and anti tpg antibodies? At one point they had both tested but later on only the tpo.
Okay, I shall take longer between the times that my antibodies are tested.
I just read in 1 study that if your tsh and antibodies keep rising then it's more likely you're developing hashimoto.
But like you say, with antibodies, you just have it.
Some studies say that I don't need medication yet since only my tsh is out of range others say it could help fight symptoms.
I just wish they did more studies on it as I think they don't know half of it yet and there are too many "maybe"s still.
I also want to find out why I have this and what caused this. Is it family related? The only autoimmune disease that is common is diabetics, type 1 (from young age).
I read somewhere that you have a higher risk of hashimoto if you have relatives that are diabetic?!
Also, it's not common in males so why the heck did I get this? The only thing I can think of is that it was slumbering and stress brought it to the surface or is it just bad luck?
Can't find anything on why people get this :\
For women it's more common apparently.
The only thing I didn't mention yet is that I have chronic insomnia, idiopathic insomnia since I was a baby.
So more than 40 years of lack of sleep cannot be good for your body and mind either.
All doctors said that they don't see a link between the two though. But what does a buildup of lack of sleep do to a person?!
Autoimmune disease is a combination of genetics and an environmental trigger. Two of the various genes seen with Hashimoto's thyroiditis includes HLA-DR3 and HLA-DR5. Wikipedia has an article on each gene if you are interested.
My mother's Hashimoto's thyroiditis was triggered by the drug nexium (acid blocker which causes oxidative stress). She got off the drug and improved her diet and lifestyle and is now in remission for Hashimoto's thyroiditis actually. Her doctor said he has seen that before in other thyroid patients of his which was interesting.
Excerpt from Elaine Moore - Thyroid Disease Triggers...
"This article describes the known and suspected triggers of autoimmune thyroid disease. Known triggers include cigarette smoke, stress, low selenium levels, seasonal and food allergies, sex steroids particularly estrogens, excess dietary iodine, and trauma. Thyroid cells may also be injured by oxidative stress related to the immune system's response to low antioxidant levels.
Suspected environmental triggers include retroviruses, Yersinia and other enteric bacteria, and aspartame in artificial sweeteners."
Excerpt from the book "The Everything Guide To Thyroid Disease" by Theodore C. Friedman, MD, PhD and Winnie Yu Scherer:
"Although the majority of people with Hashimoto's will not develop any other disorders, it's important to know what some of these autoimmune conditions are in case you do start to experience symptoms. Keep in mind, too, that you may be more likely to develop Hashimoto's if you have one of these other conditions.
Type 1 diabetes
Systematic Lupus Erthematosus (SLE)
Inflammatory Bowel Disease
Multiple Sclerosis (MS)"
Since you are from the Netherlands the last part of this paragraph is a bonus lol...
Wikipedia HLA-DR5 article...
"DR5 is associated with persistent generalized lymphadenopathy (PGL) and Kaposi sarcoma in AIDS, juvenile rheumatoid arthritis, pernicious anemia, Hashimoto's thyroiditis, mycosis fungoides, polyglandular deficiency syndrome, systemic sclerosis, childhood epilepsy, early-onset alopecia areata, short-ragweed Ra6 allergy, primary antiphospholipid syndrome, and increased longevity in the Dutch"
What about anti inflammatory drugs like nsaid's would it be possible that that fights the antibodies as it reacts as an inflammation?
I shall try the selenium supplements.
NSAIDs do lower inflammation but all NSAIDs increase the risk of gastrointestinal bleeding, heart attack, and
A drug you might be interested in is called LDN (low dose naltrexone). From the LDN website...
"In general, in people with diseases that are partially or largely triggered by a deficiency of endorphins (including cancer and autoimmune diseases), or are accelerated by a deficiency of endorphins (such as HIV/AIDS), restoration of the body's normal production of endorphins is the major therapeutic action of LDN."
Yes but it might lower the antibodies since it's an inflammatory reaction.
LDN looks very interesting, it is a prescription drugs though so need to see how to get my doctor to prescribe that.
I read that with thyroid problems it can happen that people have to adjust their levo meds when using it.
I read the same about selenium.
Since I have just started with levo, I might not know what is actually helping me, the levo, the LDN or the selenium :P
LDN doesn't lower antibodies though I think and that is my goal. It can make me feel better I read, the only downside is that it messes up your sleep which is not good for me as an insomniac. Worth a shot though.
Startend in June with thyrax 12.5mcg so half a tablet and end of July tsh had dropped from 13 to 10.
In August I upped the dosage to 25mcg. Will see the results next time when I get blood tested later this month.
Started ldn in July, 1.5mg. No change in antibodies yet, still around 250.
How long does it take for ldn to show results?
I read somewhere up to half a year.
Does anyone know?
When TSH goes up, FT4 should go down and the other way around. One thing to ask your doc is if you might have Heterophile antibodies. Switching labs might help, it did for me.