I’m posting for the first time after following the community’s invaluable posts for a few months now.
I’m early 30s and was diagnosed with Hashimotos in 2015. My antibodies have stayed steady between the 40-80 mark (400-800, depending on where you place the decimal) since then and my TSH remained between 0.9-2.3. I’ve tried every holistic therapy in the book - from NAET to acupuncture, diets, herbal supplementation and bio resonance therapy, but haven’t managed to significantly improve my symptoms.
Last November, as my anxiety and symptoms were getting worse, my doctor offered a small dose of Levo (25 mcg). After much research, I went and ordered NDT from LuckyVitamin as an alternative. To cut a long story short, I started suffering from terrible insomnia, numbness in my fingers, and increased anxiety and irritability. When I next had a blood test this April my antibodies had gone up to 181 (1810) and TSH to 4.8. I stopped the NDT overnight and subsequently had another blood test weeks later. My TSH was 6.8. I requested another blood test to include antibodies and 3 weeks later (this week), my readings are 210 (2100) and a TSH of 9.3. I’m petrified that the NDT has induced the onset of hypothyroidism - or fast forwarded it - and I don’t know what to do.
Is there any way to reverse what’s happened? i.e. can I undo the amount and multiplication of antibodies that the NDT seems to have induced?
Any help / advice you could give would be sincerely appreciated x
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HypoCrazy
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I take it your antibodies have always been over-range? Impossible to say because you don't tell us which antibodies they are, nor the range - I I'm not sure what you mean about the decimal point, I've never seen a decimal point in an antibody reading. But, antibodies fluctuate all the time, so this is hardly something to worry about.
Over-range antibodies mean you have Hashi's - although I must tress that the antibodies are not the disease, because not all Hashi's people have high antibodies, they are the result of the disease. And even if you managed to get rid of them completely - although I doubt you could - you would still have Hashi's. And, Hashi's, at some point or another, is going to make you hypo.
Did you buy your NDT from a source recommended by someone on this forum? Or did you just google it? If someone recommended the source, then there should be nothing wrong with it, but that doesn't mean that it's going to suit you. NDT does sometimes have the effect of triggering an immune attack on the thyroid, if you have Hashi's. But it won't have caused the Hashi's.
However, if you just bought the NDT from an unknown source, who knows what it might have contained. It could be dodgy.
How much did you take? If you started yourself on too small a dose, then it could have been enough to stop your thyroid working but not enough to replace the hormone it was making, thereby effectively giving yourself a reduction in total hormone. That will have caused your TSH to rise.
Did you feel well at any point on NDT? Or did your symptoms continue? In any case, all you have to do is stop taking it, and your thyroid will start working again, the way it was. But, you will still have hypo symptoms, like you did before.
None of the things you tried were likely to have much effect on your symptoms because your symptoms were caused by low thyroid. And you can only replace a hormone with a hormone. Gluten-free sometimes helps if you have Hashi's, and acupuncture will give temporary relief. But nothing is going to make a damaged thyroid produce more hormone.
I suggest you stop taking the NDT - if you haven't already - and retest in six weeks, see where you are. But, don't worry. I doubt you did yourself any damage. But, the damage that was already done by the Hashi's will still be there.
Thank you so much for your response greygoose. My thyroid antibodies have previously varied from 40-80 with the standard range of 0-34 being ‘normal’ - so not terribly out of the normal range. The current bloods are a direct consequence of taking a product called ‘Raw Thyroid’ from Natural Sources for 5 months, purchased from LuckyVitamin which is a reputable US distributor of supplements.
You’re right, I was only on a small dose (one grain) and my symptoms didn’t improve, they just worsened. Having not taken NDT for over two months now, is it normal that my TPO antibodies and TSH would continue to considerably worsen?
And I guess what I’m hoping to hear in the midst of my panicking is whether or not my TSH and antibodies will ever revert back to the way they were before I started taking the NDT (antibodies and TSH are now up 500% and getting worse week by week)
Your antibodies don't have to be much over-range for you to have Hashi's. There aren't degrees of Hashi's, just Hashi's. And you had Hashi's. And the antibodies raise just after an attack. That's all, nothing sinister. The fact that you haven't caught them that high before, is sheer chance.
And what you took wasn't NDT, it was a glandular, probably with no hormones in it. Some people do well on them, others don't. But it didn't make your Hashi's get worse, because as I said, there aren't degrees of Hashi's.
I doubt your TSH will ever go back to the way it was. But that's nothing to do with the glandular, just the progression of your disease. The antibodies probably will drop again, but that is meaningless, it just means you're between attacks - and you actually need your TSH down to zero to avoid the attacks.
So, if your TSH is rising, take advantage of it by persuading your doctor to prescribe you some thyroid hormone replacement - the only way to stop the symptoms - and lay off the glandulars in future.
Thank you goose. It's just I've had a dozen or so thyroid bloods taken previously and never had a TSH recorded above 2.something, nor antibodies above 70-80. And now the bloods are all recording very high TPOab and TSH - directly following having taken the supplement for five months. Would levothyroxine 'call off' the attack?
No, it wouldn't. But, the attack isn't going to last forever. It's probably over now, anyway, as your TSH is high. And the antibodies are just cleaning up the crime scene, as it were. During, and just after the attack, the TSH is very low, because the Frees are very high. The Frees gradually drop, so the TSH rises. But, it leaves you hypo, and there's nothing you can do about that apart from take thyroid hormone replacement. But, it's not your fault, nor anything you've done. That's what Hashi's is, a series of immune system attacks on the thyroid. And the fact that your TSH was never above 2 before, didn't mean it never would be. Because Hashi's makes you progressively hypo.
That supplement you've been taking isn't NDT, it's a mix of a weak glandular (which may or may not have any active hormone in it at all) and few vitamins and herbs, and is very unlikely to have helped. You could try real NDT (quite cheap from Thailand) or source your own levo and T3.
Hey Londinium - thanks for your reply. I was taking ‘Raw Thyroid’ by Natural Sources until I had the recent bloods from April onwards. I’ve been supplementing with high dose Vitamin D3 & K2 for a long time - would this be enough?
What you bought would not be NDT, it would have been some sort of thyroid support aka thyroid stimulant or thyroid glandular. NDT is prescription only or available non-prescription from Thailand.
Check the ingredients of what you bought. Does it contain Iodine or kelp? If so then that can make Hashimoto's worse.
And where is the decimal point with your antibody results. It's not a case of where you put the decimal point, it's a case of where is the decimal point in your results and what is the range. There is a huge difference between 40.00 and 400.00 as one is 40 (forty) and one is 400 (four hundred) or 181 (one hundred and eighty one) and 1810 (one thousand eight hundred and ten).
As you have Hashi's , are you strictly gluten free and supplementing with selenium l-selenomethionine 200mcg daily?
Thanks so much for your reply Seaside. The product I was taking contains the following: Synergistic complex 390mg (thyroid tissue, adrenal tissue, pituitary tissue, thymus tissue, spleen tissue, maltodextrin (from tapioca), American ginseng, kelp and flogard.
My antibody results are 210 if looking at a ‘normal’ reference range of 0-34.
And yes I am very strict on gluten free and supplementing with selenium. I was also taking LDN but it doesn’t seem to have had a noticeable effect beyond the first few months I had taken it in 2015 x
So it's not NDT and is a glandular with Iodine (kelp). No actual amounts of anything.
Whereas NDT have stated amounts of T4 and T3 (generally 38 mcg T4 and 9mcg T3) you don't know what you're getting with thyroid glandular. And the kelp will make your Hashi's worse.
Do you have your latest results for thyroid panel and nutrient levels? Can you post them, with reference ranges, for members to comment.
Your TSH is high and will be well over range. In the UK doctors usually wait until TSH reaches 10 before diagnosing hypothyroidism and prescribing Levothyroxine. However, where there are antibodies present, with a high TSH there is no reason not to prescribe Levo now.
I can't comment on your FT4 and FT3 as you haven't given the reference ranges so they can't be interpreted.
So sorry to hear what has been happening to you HypoCrazy. I very much doubt the ndt has had anything to do with your worsening thyroid. It sounds like your thyroid has been struggling to cope with the autoimmune attack thats been going on probably for a long time and now it is leading your thyroid to finally start to fail. I think its good that you have stopped the ndt that you bought. I really hope with a TSH over 9 your doctor has recommended instigating thyroid medication introducing it slowly with 6-8week reviews including bloods of your progress?
It is going to take a while to get right.
You have done everything you can to try to prevent the failure of your thyroid but unfortunately the autoimmune attack your body launched on itself did not ease. Please dont beat your self up. Unfortunately no one out there has been able to invent a way to stop the body doing this so our ability to counteract it is very limited and frequently not effective.
Really hope you start to feel better once on thyroid medication as advised by a doctor.
Make sure you ask for copies of all blood tests and keep a not of medication and dose that you are on so you can compare later on.
Thank you for your lovely empathic message Wavey. If you're currently medicated, did you find that taking Levo or similar helped 'call off' the attack? X
I think slowdragon has given you execellant advice. Umfortunately how we respond to thyroid medication is very individual and essentially trial and error with slow graduated changes every 6-8weeks to allow the body to adjust to each small change. Personally I did not do well on levothyroxine and in the end ended up on a ndt, eventually finding one that suits me best.
Putting in place a gluten free diet and getting your thyroid treated optimally for you are truly your best defense against the effects of what is happening to your body. You are doing all the right things by making sure your vitamins and minerals are well balanced as hypothyroidism does cause inbalances which often do correct as treatment becomes optimal. So supplementing will help your body to make best use of the thyroid hormones.
Many people lead very good and active lives once their thyroid treatment is sorted out.
Am not aware of any treatment out there that will stop autoimmune attacks on the thyroid Im afraid but a gluten free diet can slow down the progression. Many people do feel better on gluten free as there is some research that links a hugher frequency of hypothyroidism with people diagnised as having celiac or gluten intolerance.
Take heart you will find great support on here and many poeple who have excellant knowledge and skill who can advise/help you as your treatment gets put in place.
Getting replacement thyroid hormones dose correct to bring TSH down to around one and FT4 towards top of range and FT3 at least half way in range will help, and should lower TG antibodies quite a lot
Very many with Hashimoto's find strictly gluten free diet helps slowly reduce TPO antibodies
Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels
Low vitamin levels affect Thyroid hormone working
Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies
Raw Thyroid is just one of several untested, uncontrolled so called supplements that are alleged to be effective in thyroid function control but actually can be dangerous. Here is an excerpt from the Googled site: 5 ways you should avoid thyroid supplements:
Experts warn that taking these thyroid supplements is a bad idea. Here's why:
1. Thyroid Supplements Might Have Actual Thyroid Hormones
It isn’t possible to know if a supplement contains thyroid hormones from reading the label, but a 2013 study published in the journal Thyroid found that nine out of 10 supplements marketed for thyroid health and support contained real hormones. Four of those that tested positive listed the ingredient “bovine thyroid tissue,” which might naturally contain hormones. But five supplements that tested positive listed only herbal ingredients, such as ashwagandha, guggul, and Coleus forskohlii. “Since plants cannot produce the hormones the researchers found, thyroid hormones from an animal or synthetic source must have been deliberately added to these supplements,” says Consumer Reports’ senior scientist Michael Hansen, Ph.D.
That is concerning because healthy thyroid hormone levels are very precise and taking supplements that contain these hormones can alter those levels in unpredictable ways. “Thyroid hormone levels even slightly above or below where they should be can lead to health complications,” Lipman says. “For example, taking more thyroxine than you need can cause erratic heart beats and bone thinning.”
It’s also impossible to know how much thyroid hormone a supplement might contain. Several of the supplement samples the researchers tested contained doses of thyroid hormone that were higher than 25 mcg—the lowest dose of levothyroxine available by prescription. And one contained more than 90 mcg—slightly less than a doctor would prescribe for a patient whose thyroid gland had been removed.
2. They Can Contain Iodine
We need only 150 mcg of iodine per day in our diet, according to the Institute of Medicine. “That tiny amount of iodine enables the thyroid to manufacture just the right amount of the thyroid hormone thyroxine,” Lipman says.
But ingesting excess iodine can cause health problems. It is particularly worrisome for people with thyroid nodules—bumps on the thyroid glands that can be very small and often go unnoticed. “If you have a nodular thyroid—and chances are that 50 percent of us will develop one or more nodules by the time we’re 60—even a slight excess of iodine can cause your thyroid to go into overdrive and produce excess thyroxine,” Lipman says. “An overactive thyroid can cause sudden weight loss, a rapid or irregular heartbeat, sweating, and nervousness or irritability.”
Conversely, studies also show that too much iodine (more than around 400 mcg per day) can cause the thyroid to slow down or even stop producing hormones in certain people—the opposite effect of what many people hope these supplements will do for them. That can result in weight gain and fatigue, and can increase your risk of cardiovascular disease,” Lipman says.
Yet many supplements contain more than 150 mcg of iodine. For example, both Enzymatic Therapy’s Metabolic Advantage and Whole Foods’ Thyroid Complete contain 200 mcg per two-capsule serving. Follow the recommendation on the labels and swallow two capsules three times a day and you’ve ingested 600 mcg of iodine—enough to cause health problems in certain people if taken long term.
3. Thyroid Supplements Might Have Kelp in Them
Kelp, a type of seaweed that is often marketed for thyroid health, is loaded with iodine. For example, a serving (one drop) of Liquid Kelp, a dietary supplement promoted for “Thyroid Gland Support,” contains 800 mcg of iodine. “Most people get enough iodine from their regular diet,” Lipman says. But if you take a supplement that contains kelp, plus a multivitamin, such as GNC Women's Ultra Mega One Daily containing 150 mcg of iodine, and also use iodized salt that contains 400 mcg of iodine per teaspoon, it’s easy to consume far more iodine than your thyroid needs—or that is healthy.
4. They Might Also Contain Cow 'Glandulars'
Glandular organs such as thyroid, liver, pancreas, heart, and spleen, can be found on the ingredients list of some thyroid and metabolic support supplements. For example, Natural Sources’ Raw Thyroid supplements contain raw thyroid, adrenal, pituitary and spleen bovine tissue. But our experts say that ingesting ingredients like these is not wise. “Supplements that contain pituitary or brain products from cows could theoretically pose a risk for Creutzfeldt–Jakob, a rare disease that occurs in humans and causes brain tissue to degenerate rapidly. The disease has been linked to eating material from cows infected with mad cow disease,” Hansen says.
Prions, the agents that spread mad cow and Creutzfeldt–Jakob disease, are most commonly found in the brains of cows, but there is evidence that if an animal has an infection, you can also find prions in their spleens, kidneys, and other glandular organs,” Hansen says. “Those prions are far harder to kill than bacteria or viruses, so processing or treating the organs before adding them to supplements won’t necessarily eliminate the risk,” he says.
5. Thyroid Supplements Can Hinder Treatment for a Thyroid Condition
Thyroid problems can be diagnosed easily through blood tests, but taking supplements that can alter the level of thyroid hormones in your blood can mask thyroid issues. And because supplements aren’t regulated the same way drugs are, they can contain varying amounts of active ingredients. “If your doctor can’t establish how much thyroid hormone your body needs, he can’t prescribe the correct amount, and that can cause health problems,” Lipman says.
The Council for Responsible Nutrition, a trade association that represents the dietary supplement industry, acknowledges that thyroid supplements can interact with prescription medications. And, says Duffy MacKay, N.D., CRN’s senior vice president for science and regulatory affairs, “It is important to talk to your doctor before starting thyroid supplements.”
Yet Stephanie Lee, M.D., Ph.D., director of the Thyroid Health Center at Boston Medical Center and a spokeswoman for the Endocrine Society says a well-informed physician would never advise a patient to purchase an over-the-counter thyroid support supplement. “If the thyroid functions were abnormal, we would prescribe the FDA-approved medication because, among other issues, there’s no evidence that thyroid support products improve thyroid function, and they can cause health complications and confuse a diagnosis,” Lee says.
Thank you SO much for your post diogenes. It all makes so much sense. May I ask if you're currently medicated yourself and if so, if it's helped eliminate your antibodies / a high TSH? x
Can you or other similarly knowledgeable friends on this network advise me on whether i should ask my GP to
a) increase my levothyroxine T4 dose to 100mcg daily
Or
b) add 20mcg T3 to my current 75mcg thyroxine
Or
c) switch from levothyroxine to NDT (not sure if 100mcg of T4 = 100mcg NDT?)
My TSH is 3.1 & I’ve been having tingling & numbness in my hands, arms & starting in my foot. I’m on 75 mcg Levothyroxine per day. So based on advice here I think I must be under replaced. MRI shows no compression & I’m neurologically “normal”)
With only a TSH to go on the answer must be tentatively that you are rather underdosed. Anything to raise your (unmeasured) FT3 would be useful BUT you need to get FT3 measurements to check on progress by whatever therapy.
I just went to my GP & he has agreed to check my T3 & T4. He said TSH of 3.1 is not enough to cause tingling in arms hands & feet. He also said the fact that I had lost weight & not gained it means my thyroid is probably ok.
Overnight I had diarrhoea & this is new but really worrying me. Have you come across this with under active thyroid? I thought constipation & weight gain were more typical.
It sounds nothing to do with the thyroid I would ask the doctors to check your out again. By the way I was losing weight taking too much NDT for a couple of months no tingling though.
That’s even more worrying as I was hoping I might have got somewhere with TSH being too high (3.1 while on 75mcg Levothyroxine). The GP said hypothyroid at my level wouldn’t cause neuropathy. But others on this forum seem to suggest it could be thyroid related.
Thanks Londinium. My D3/K2 supplement is 5,000 iu / 100mcg. What do you think? And if I inadvertently took Kelp for 5 months would the 500% increase in TPOab and TSH die down at some point now that I haven't taken the glandular/kelp supplement for two months now? x
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