I was diagnosed with Hashimotos in 2002 based on the following labs:
TSH 19.4 mUI/L (0.35-4.5)
FT4 0.41 ng/dL (0.7-1.5)
anti-TPO UI/mL 6011 (<11)
anti-TG 411 UI/mL (<4)
No FT3 tested at the time as doctor said it was "useless".
I was put on 50 mcg of Euthyrox and worked my way slowly up. When I reached 150 mcg, the doctor told me I did not need to raise it any further and, possibly, should lower the dose somewhat based on labs (from 01/2003):
TSH 0.9 (0.35-4.5)
FT4 1.2 (0.7-1.5)
The doctor said that, although the TSH was still in range, he did not feel comfortable with a TSH below 1...no anti-TPO or anti-TG tested since he said they were only needed for "initial diagnosis".
Over the years, I have been struggling with weight gain and symptoms such as cold hands and feet, hair loss, mineral and vitamin deficiencies, dry and itchy skin, puffy eyes, bloating, fluid retention...
At one point, I ordered private labs. On 150 mcg of Euthyrox:
TSH 0.7 (0.35-4.5)
FT4 1.2 (0.7-1.5)
FT3 1.9 pg/mL (1.6-3.7)
At this point, I decided to see a doctor trained by Dr. Hertoghe to see if it made a difference.
Based on labs (blood and 24 h urine analysis), I was put on Erfa Thyroid, and told to raise it slowly while decreasing Euthyrox at the same time.
Then, before I had become fully optimised on Erfa (I never made it past 2.5 grains daily), it became unavailable in all Belgian pharmacies, plus my doctor had a waiting list of +/- 12 months...so I had to figure things out myself.
Given the prohibitive cost of NDT in Belgium, plus the fact that I had not had that great results on Erfa, I decided to order Thyroid-S and self-medicate. At the same time, I decided not to care about lab results anymore, but simply to go by symptom-relief like in the "good old days"...so, I made my way up to 5 grains of Thyroid-S daily, and felt great..for the first time in years. It was like a lightbulb switched on inside my head...and I only felt better the longer I stayed on it.
Labs after one year on 5 grains of Thyroid-S daily:
TSH <0.01 (0.35-4.2)
FT4 1.1 ng/dL (0.7-1.5)
FT3 3.0 pg/mL (1.6-3.2)
anti-TPO 13 UI/mL (<6)
anti-TG <2 UI/mL (<4)
I had by then finally managed to lose weight (27 kg(60 lbs) and rid myself of symptoms which plagued me while on Euthyrox, such as hair loss, dry, itchy skin, weight gain, bloating, fluid retention, sugar imbalances...
When I had finally managed to recover while self-diagnosing and -treating, things started to go wrong again....I started developing symptoms that doctors first diagnosed as epilepsy. Although several EEGs and MRIs came back normal, they said it "had to be epilepsy because nothing else made sense"...the main symptoms were blackouts and memory loss. I was put on two different anti-epileptic drugs without noticing any improvement. If anything, they made me worse. The more I took, the worse I felt...I ended up hospitalised, and a spinal fluid tap was ordered. It showed I had autoimmune encephaltis...I was treated with high doses of cortisone IV for five days, then went on oral cortisone for a few weeks and then the treatment was stopped. Today, I received a clean bill of health from my neurologist. However, he said that, having reviewed my thyroid history and treatment, he believes the NDT is the reason I tested positive for antibodies in my spinal fluid, since NDT is known to make autoimmune thyroiditis worse...he wants to refer me to an endocrinologist to be put on levo again, since it´s (in his opinion) "obvious that the NDT caused the autoimmune encephalitis".
I have really felt great on Thyroid-S, much better than on Euthyrox or even Erfa (although I never took an optimal dose of Erfa)....but, could he be right that NDT could somehow be responsible for causing autoimmune encephalitis...?
I have been unwell for most of my life (I am now nearly 70), I became particularly unwell from about 1982 onwards, and after another six years was diagnosed as having ME. Encephalitis was a definite symptom with me, and I still get it occasionally.
My health improved generally from the time that I was put on NDT, but it hasn't been a smooth ride. Various NDTs have altered over the years, and while ERFA was fine at first, it later made me feel awful after it was changed. I'm currently using the last of my T-Man NDT.
I would not say that NDT has in any way increased my encephalitis, rather the opposite is true, ie if I am generally better because I am taking NDT, then I don't notice the encephalitis so much.
So to me, it sounds like your endo is playing safe and keeping to the 'thyroxine works for everybody' script. Your encephalitis would be more likely to be the result of a viral infection in my opinion. If you are clear of it then I see no need to take you off NDT.
As you found, 'going it alone' is the best option for some of us, and you will have to decide if the doctor actually knows as much about your condition and treatment as you do.
Finally it would seem logical to me that if NDT can cause autoimmune encephalitis, then that would be true for any of the other thyroid medications too.
I agree it´s not logical! I know some doctors claim that NDT can make Hashimoto´s worse and that people with Hashi´s are better off on synthetics, the idea being that NDT can worsen autoimmune attacks...but if patients with Hashi´s couldn´t take NDT, who could...after all, an overwhelming majority of people with hypothyroidism have Hashi´s...?!
Each of us are different and it depends on gut health as well. T3 in high doses cause brain fog for me as T3 converts to Estrogen with me and that triggers histamine and mast cell activation . NDT years ago wasn't formulated as tablets. My mom used to boil chicken necks and glands from be other animals and drank the broth. I am now 68
"NDT is known to make autoimmune thyroiditis worse"
What is he talking about???!!! That honestly doesn't make sense, even for a doctor who knows next to nothing about thyroid issues. Are you sure you understood what he really meant?
I had never heard of autoimmune encephalitis, but any autoimmune disease seems to make you more likely to develop a different one as well. But how can taking NDT possibly make things worse?
NDT doesn't suit everyone, but neither does levo or any other thyroid replacement treatment. We are all individuals and respond differently.
Welcome Chrissie, I dont have experience of hashimoto's Encephalitis , but i was reading about it with interest a while ago to see if it might explain how unwell i was. I came to the conclusion it was serious and scary and quite rare. you have my sympathy .spinal tap sounds nasty . Glad to hear you have recovered, and understand why you don't want it to come back.
Just wanted to let you know someone else will no doubt be along shortly with more experience.
I was diagnosed Auto immune hypo since 2003. and i thought my antibodies were high at 2499 then >3000, but now i see from yours i was just a 'beginner' !
It is encouraging to hear what a difference NDT made to you . I stayed on levo all these years, and if being polite i would say the result is 'sub-optimal' !
I'm not sure i follow your neurologist's 'logic' here though , NDT causing antibodies in spinal fluid ? NDT causing antibodies anywhere in fact ?
" since NDT is known to make Autoimmune Thryoiditis worse" ? if 'thyroiditis' here means overactive thyroid gland ,well you wouldn't be adding NDT to that scenario anyway.
"obvious that the NDT caused the Autoimmune Encephalitis" ? From what i read, nobody knows what causes it, but i'd hazard a guess that your Autoimmune disease caused your autoimmune Encephalitis.
If NDT made it more likely to happen , i would have expected the number of cases to have been much higher in previous decades when all HYPO was treated with NDT, and a clear drop in cases when Levo was introduced ? I don't remember reading anything to that effect.
I will keep an interested eye out for any further answers on here, cos the subject interested me. Sorry i havent been any actual help. I can appreciate how worried you must be.
Yes, the neurologist claimed that NDT contains antibodies that can cause other autoimmune diseases, such as autoimmune encephalitis...if anything, I believe there might be a connection between my Hashimoto´s and the autoimmune encephalitis, so two autoimmune conditions, but I personally don´t think that NDT had anything to do with it...this neurologist is very negative towards it, and claims that 1. you never know how much hormones you are taking and 2. it contains other, unknown substances which may affect you adversely. He basically seems to think that anything coming from a pig is unnatural for humans...plus, he consulted with a mainstream endocrinologist who agreed that levothyroxine and TSH normalisation are the norm...!
Mmm ... well ,since he's so much more knowledgeable than any other scientist i've read on the subject so far! (having discovered antibodies in NDT !), maybe you could get him to test a sample of NDT and show the rest of the world which antibodies are there,..... i'm sure being such an eminent researcher he will know someone who can perform a suitable test. Sorry ,i'm being sarcastic, but really!
I have read of an even rarer case of hashimoto's encephalitis without accompanying hashi's hypo, but from memory (like a sieve , to be fair) i think it is usually found in patients who already have , or ,subsequently develop Hashi.
I'm sorry , i didn't save any useful references , as having read up on it , i decided it sounded so nasty i would certainly know about it , if i had it.
Re . the 'unknown substances which may affect you adversely' Maybe? but unknown does not mean dangerous , it just means unknown. And doctors are quite happy to risk adverse side effects from 'known' substances on a daily basis, if they and the patient agree the risk/ benefit ratio makes sense for that individual. I've never understood why Thyroid patient's are not allowed to be party to the discussion about 'our risks', but it seems not . (well actually i think i do understand...... you can't patent a pig )
I'm still sorry none of this helps with your tricky decision here , and in all honesty i'm not sure what i would do if i were you.
Wouldn't it be nice if you had a doctor whose opinion you could trust, and who you felt was attempting to follow your best interests rather than follow the peer pressure to Give Levo /Test TSH/Problem solved.
Unfortunately, in my experience, very few doctors are knowledgeable about the treatment of thyroid disease. Most doctors are unhappy with a suppressed TSH, and even more unhappy if you take NDT. I have had doctors who did not know what it was, and doctors who claimed it´s old fashioned and not as safe as "man made" hormones...I have learned to ignore them, but the issue of my low TSH keeps coming up...it´s like doctors cannot help but interfere when they see a suppressed TSH, even if the patient didn´t ask them to....!
Mine told me last year "but you'll die" (actually to be fair, he looked really scared, but i'm not sure if it was my tsh or his fellow Gp's opinion and the potential cost of a T3 prescription he was frightened by). And i'm only taking LEVO !
I'm concerned for his blood pressure if i ever go in saying i'm going to try T3/NDT since you clearly can't help me any further. Still i could always suggest some Statins/ betablockers/Antidepressants/counselling , since as we all know they fix everything
What do you think you 'll do about going back on Levo v's carrying on on NDT ?
I think (cautiously, due to sieve /memory prob) that the studies i read on the hashi Encephalitis cases were isolated incidents not recurrent problems. But not all responded well to treatment.
Well, since I took levo only for years without complete symptom-relief, I assume going back on levo would do me no good in the long run.
I have noticed NDT working less well (or should I stay stable) since coming off the steroids. I have read that high doses of cortisol causes your body to increase rT3 conversion. Even if rT3 does not block the action of FT3 (as was previously believed), it could be that NDT contains too much T4 for my needs right now if most of it is converted to rT3...just a thought. I have ordered a 24 h saliva test kit since some of my symptoms seem to be related to high cortisol (my cortisol levels were lowish a few years ago when I first went to see the functional doctor, but I managed to get better using glandulars).
its an Interesting thought . (and probably more thought than the 'mainstream Endo' has given it ) And personally ,i cant recommend Levo for a lifetime of fun .
I'm out of my depth on the cortisol issue, but hang around , there will be some more knowledgeable ones along shortly
in reply to
"I have noticed NDT working less well (or should I stay stable) since coming off the steroids. I have read that high doses of cortisol causes your body to increase rT3 conversion."
I'm just beginning to have to research adrenal problems because think I have that as well as thyroid. The two are connected as both help to control metabolism.
I think it was Dr Peatfield who said that treating adrenal deficiency (eg with steroids) helps thyroid hormones to work better, and you might even have to reduce your dose of thyroid medication as a result. Maybe that is why RT3 is produced? So it makes sense that coming off steroids means you might need an increase in NDT.
tattybogle , I'm out of my depth too, but just beginning perhaps to be able to doggy paddle a bit Although I find typing hard going at the moment as one of the symptoms is exhaustion and difficulty with fine coordination, though it doesn't feel quite the same as what you get with hypothyroidism.
Maybe we can help each other. I got Dr Peatfield's book on Kindle and found the adrenal section very helpful. (Barry Durrant-Peatfield, Your Thyroid and How to Keep it Healthy)
The other thought that I had about this was that NDT has been used for 130 years now. Surely if it did cause something like encephalitis it would be well-documented by now.
I had very much the same experience. In my case I tried doing T3 only for some months. I developed severe side effects of it and same with NDT. Then discovered that my encephalopathy and symptoms were due to high histamine and oxalates and histamine liberating ingredients in food and medication. T3 being one of the liberator taken in high doses. I now follow a low histamine diet and only 1.5 mcg T3 and 62.5 T4. I could get send you a food and medication list if you are interested.
I always advise testing thyroid antibodies before and after starting new thyroid medications. For example, if someone starts feeling worse after initially feeling better on NDT or has an increase in thyroid peroxidase antibodies after starting NDT, switching to a compounded T4/T3 medication may be helpful.
Thanks for this input, but this does not apply mainly to patients who feel worse after starting NDT, or whose antibodies rise? Mine have falled steadily over the years and are now almost in range. I have read that a suppressed TSH (common in people on T3 or NDT) can have a calming effect on antibody activity.
I take back my earlier comment about it being rare without autoimmune thyroid disease accompanying it . Having just looked it up again in Rare Diseases, it's the other way around, so you are even more special (lucky you )
Seems it's other name is Steroid-Responsive Encephalopathy associated with Autoimmune Thyroiditis (SREAT )
for anyone interested. Also shows i was incorrect about recurrence.
Seems as though the antibody cause /effect question is the same as we are used to for hypo. 'The levels don't correlate to severity as far as they know from current (lack of) evidence'
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