Is any of this normal? Been on 50mg of Thyrax for 6 months now and severer anxiety still, which I think has worsened...all other symptoms above which I researched are side effects of this medication.
I've been managing my hashimotos naturally for 5 years until I had an accident where a horse bit half of my finger off. It's damaged some nerves and in particular apparently dysregulated my vagus nerve, hence panic and anxiety, muscle aches, constiption, feeling of something stuck in my throat on right side, jaw clenching, ear pain and blocked-ness, tinnitus, sever neck ache on right side,( horse bit right middle finger)
Doctors said I HAD to start taking Thyrax because my thyroid had inflamed from the trauma, but in 6 months I'm barely functioning as a human being, can't go out the house, shortness of breath, feel in constant freeze mode, survival mode, so they also put me on lorazepam. Neither meds seem to be helping and I spend my days taking hot and cold baths, breathing for hours and hours trying to relax the muscle spasms, trying to focus as my brain seems so traumatised I can't sit still, relax or focus on anything with the fear of what is going on inside my body. Having sensations of electriccity continuously moving roundly body and right side of neck is almost frozen in pain, only relieved by lying down with a damp cloth.
Nerve damage? Trauma release? Can anyone help?
My TPO Antibodies have also risen from 2227 to 5000 since starting the Thyrax? What does this mean? Other levels have stayed exactly the same- TSH 94, also high
What am I supposed to do? Is this medication not right for me or should I take more mg per day and see what that does?
Pretty terrified and can't find answers anywhere
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50 mcg is only a starter dose. They should not have left you on it for 6 months. After six weeks you should have had a retest followed by an increase of 25 mcg levo. Then repeat the process until all your symptoms are gone.
Raised antibodies means that you have Autoimmune Thyroiditis - aka Hashi's or Ord's. It's an autoimmune disease where your immune system slowly destroys your thyroid.
A brief explanation of Hashi's:
OK, so Hashi's is an autoimmune disease – commonly called by doctors Autoimmune Thyroiditis - where the immune system attacks and slowly destroys the thyroid. It is diagnosed by blood testing Thyroid Peroxidase (TPO) antibodies and Thyroglobulin (Tg) antibodies.
(It's necessary to understand that the blood test to see if your hypothyroidism is autoimmune might not give you any further information, for three reasons:
* What they are testing for are TPO antibodies. Antibodies fluctuate all the time, so one test might be negative, and the next positive. But, if you have one over-range test, it does mean you have Autoimmune Thyroiditis.
* There are two types of Hashi's antibodies: TPOab and TgAB. The NHS only tests TPOab, and they might be negative, but if your TgAB are positive, it means you have Hashi's anyway.
* Some Hashi's people never even have over-range antibodies. They are diagnosed by ultrasound. So, a negative antibodies blood test does not mean you don't really have it.)
There are two types of Autoimmune Thyroiditis: Ord's and Hashimoto's. But, we call them all Hashi's for convenience. The difference is, that with Hashi's, you have a goitre, with Ord's you don't. But, the end result is the same: a dead thyroid.
Contrary to popular belief, it is not the TPO/Tg antibodies themselves that attack the thyroid:
"When lymphocytes infiltrate the thyroid gland, mistakenly taking it for a foreign bacteria invader, they damage the thyroid gland and release thyroid peroxidase &/or thyroglobulin into the blood stream. These don't belong outside of the thyroid gland so antibodies are developed to mop them up.
The antibodies are a result of the attack on the thyroid gland, the antibodies don't cause the attack."
After every immune system attack on the thyroid, the dying cells release their stock of thyroid hormone into the blood stream, causing the levels of the Frees to shoot up - FT4 to around 30 something, FT3 around 11/12 - and the TSH therefore drops to suppressed.
There is no knowing how long these high levels will persist, but eventually, they will drop by themselves as the excess hormone is used up or excreted, and not only will you become hypo again, but slightly more hypo than before, because there is now less thyroid to make hormone.
(NB: A Hashi's 'hyper' swing is not true hyperthyroidism in that your thyroid is over-producing thyroid hormone. It's physically impossible to 'go hyper' if you are basically hypo. The thyroid cannot regenerate itself to the point of over production of hormones - or even normal production. Very few doctors appear to know that.)
Therefore, it's very important that your doctor does not reduce your prescription, because you’re going to need it again! If you start to feel over-medicated at that point - some do, some don't - the best thing is to stop levo for a few days, then, when you feel hypo again, start taking it again. It's very important to know one's body, and how it reacts.
There is no cure for Hashi's - which is probably one of the reasons that doctors ignore it - apart from the fact that they know nothing about it, of course!
However, between the 'hyper' swing, and the descent back into hypothyroidism, there can be a phase - quite a long one, sometimes - of normality, where the person is neither hypo nor 'hyper'. This is where people sometimes start talking of having 'cured' their Hashi's, by whatever means. But, it doesn't last. Eventually, you will go hypo again.
But, there are things the patient can try for him/herself to help them feel a bit better:
a) adopt a 100% gluten-free diet. Hashi's people are often sensitive to gluten, even if they don't have Coeliac disease, so stopping it can make them feel much better. Worth a try. Some say that going gluten-free will reduce antibodies – I’ve never seen conclusive proof of that, but, you should be aware that even if you were to get rid of the antibodies completely, you would still have Hashi's, because the antibodies are not the disease. It is not the TPO/Tg antibodies that do the attacking.
b) take selenium. This is not only reputed to reduce antibodies, but can also help with conversion of T4 to T3 - something that Hashi's people often find difficult.
c) the best way to even out the swings from hypo to 'hyper' (often called Hashi's
Flares, but that doesn't really sum up the way it works) is to keep the TSH suppressed. This is difficult because doctors are terrified of a suppressed TSH, for various false reasons, and because they don't understand the workings of Hashi's. But, TSH - Thyroid Stimulating Hormone (a pituitary hormone) - tries to stimulate the thyroid to make more hormone, which also stimulates the immune system to attack. So, the theory is, the less gland activity there is, the less immune system activity there will be, meaning less attacks, gland destruction slowed down and less swinging from hypo to hyper and back.
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If your antibodies have recently risen, it's possibly because you've had - or are having - an autoimmune attack. But, antibodies fluctuate all the time, anyway.
Is any of this normal? Been on 50mg of Thyrax for 6 months now and severer anxiety still, which I think has worsened...all other symptoms above which I researched are side effects of this medication.
Thyrax - what we commonly call levo - is not a medication in the normal sense of the word. It is thyroid hormone replacement - the thyroid hormone T4 - and all it does is replace the hormone that your thyroid can no-longer make enough of. It does not cure anything - although it gets rid of symptoms - and it does not affect your thyroid in any way.
A lot of what are often consider to be 'side-effects' of levo are the consequences of taking too much or too little. In your case, it will be due to taking too little. When you take too little, it is enough to stop the natural output of your thyroid gland, but not enough to completely replace it, so the TSH rises.
A few facts about taking levo:
* It often happens that when you start taking levo, new hypo symptoms appear, or old ones exacerbate.
* We should only test after at least six weeks on a steady daily dose. Four weeks is too soon, changes in levels can still occur up to six or eight weeks.
* Often when we start an increased dose, we feel well for a while - or start to feel better after a week or so - and then the symptoms start to come back. This does not mean the levo has 'stopped working' or that it's not right for you, it just means that it is time for another increase.
* When going for a blood draw, always leave a gap of 24 hours between your last dose of levo and the blood draw.
* It’s a well-known fact that stopping levo, for whatever reason, will make you feel wonderfully well. So much so that people believe it’s proof that they didn’t need it. But, this is just a temporary effect. Sooner or later the hypo symptoms will come creeping back in until you are forced to go back on levo again. It happens to the majority of people that stop levo.
* When giving blood test results, please include the ranges because they vary from lab to lab, and we need the ranges that go with your results.
Is this medication not right for me
It probably is right, IF you take enough of it. But, it's far, far too soon to tell. This is just the beginning of your journey. When you get your TSH down to 1 or under, then we will be able to assez how well you are going to do on levo. But, you won't get it down without increasing the dose.
That said, a TSH that high is rather suspicious, and one has to consider the possibility that there has been some sort of error at the lab - it does happen - more often than people thing - some sort of interferrence with the assez. And nothing to do with you at all. Unless you're taking biotin - are you taking biotin in some form - multi-vit or B complex?
Other levels have stayed exactly the same
It would help us enormously to understand what's going on if you post those other levels - with their ranges.
Thank you for your detailed answer. I've been hypo for 5 years, and was diagnosed after a motorbike accident that involved a TBI.
But I managed my thyroid levels/health naturally with natural medicine and diet. My TSH was at 150 initially and with the natural medicine I got it down to 56. Was managing fine until in May this year a horse bit my finger off. So it flared up again. Docs put me on 25mg to start slowly, then about 1 month ago upped me to 50mg per day. I had tests done on 1st October and
Anti TPO is like I said 5000, ( whereas was 2227 before I started the meds)
FT4 is 0.37ng/dL ( reference range 0.70-1.48)
TSH is 94
That's all I have, they didn't think it necessary to take FT3, or any other tests for some reason?
Might I add I'm in Bali, I don't know how differently they treat this, but I don't know whether to up the dose now to 75mg? Or whether it's having a bad effect on me and should stop taking it altogether. I feel awful. And I'm on lorazepam too to try calm my nervous system which is stuck in fight flight response- dissociation, muscle spasms, jaw clenching/TMJ symptoms, shortness of breath. etc Also feeling pain in my neck but have had ultra sounds, MRI's and x rays of my neck and throat and they say nothing is showing up. So I'm pretty scared as to what's going on. Feeling also a lack of movement in my right arm, tinnitus, fatigue- like I said, feel awful.
Should I up the dose or not take it for a few days to see how I feel?
But I managed my thyroid levels/health naturally with natural medicine and diet.
No, I don't think you did. You may think that's what you were doing, but even with a TSH of 56 you were very, very hypo. But, sometimes, the higher the TSH, the less symptoms people have. But, that's not a good thing. A 'normal' (euthyroid) TSH is around 1, never over 2, and you're hypo when it gets to 3. So, you can see how bad you were.
Your doctors should have started you on 50 mcg, not 25. Starting on too low a dose can make you worse, not better. Then it takes longer to get back to 'normal'. So, that was their first mistake!
Anti TPO is like I said 5000, ( whereas was 2227 before I started the meds)
That really doesn't mean anything. Once, your antibodies are over-range, the result is positive, you have Hashi's, and it doesn't go away, and it doesn't get any better or any worse, it just plods along its merry way until your thyroid is completely destroyed.
FT4 is 0.37ng/dL ( reference range 0.70-1.48)
That is pretty dire - below range! So, the TSH reading is correct. T3 is rarely tested because doctors don't understand it or what it is. But, at this point, that really doesn't matter because it's going to be very low, that's obvious. It's when your TSH gets down to about 1 that you need the FT3 tested.
What you need to do now - apart from getting an increase in levo - is ask for your nutrients to be tested: vit D, vit B12, folate and ferritin. They are going to be low, but you need to know how low so you know how much to supplement. And, having low nutrients is going to make you feel sicker, that's for sure.
Might I add I'm in Bali, I don't know how differently they treat this, but I don't know whether to up the dose now to 75mg?
I don't know anything about Bali, but I think treatment for hypo is universally bad.
Yes, if I were you, I would want the dose increased to 75 mcg now. But, normally you should wait six to eight weeks before retesting and increasing.
I take it you know how to take the levo? And, the correct way to test?
Or whether it's having a bad effect on me and should stop taking it altogether. I feel awful.
What's making you feel awful is not the levo, it's the low thyroid hormone levels - T4 and T3 - plus low nutrients = recipe for feeling really, really bad. You can't just stop taking it, because without it you will slowly die. To have had a TSH of 150 means that you don't have much working thyroid left, certainly not enough to keep you alive without an exogenous source of hormone.
And I'm on lorazepam too to try calm my nervous system which is stuck in fight flight response
Yes, because your adrenals are shot. You've been hypo for a very long time, and your adrenals have been taking up the slack. They are exhausted. I hope you're giving them lots of TLC.
dissociation, muscle spasms, jaw clenching/TMJ symptoms, shortness of breath. etc
They are all hypo symptoms - exacerbated by low nutrient levels. You are very, very hypo.
So I'm pretty scared as to what's going on.
Don't be scared, it's all reversable. What's going on is that your body is struggling due to low thyroid hormone levels. Every single cell in your body needs T3 to function correctly. And, when there's not enough to go round, it causes all sorts of unpleasant symptoms.
Feeling also a lack of movement in my right arm, tinnitus, fatigue
Low B12, low magnesium, low iron, etc. etc. etc.
Should I up the dose or not take it for a few days to see how I feel?
My non-medically-trained but very experienced opinion is to increase the dose. You won't be helping anything by stopping the the levo. It's not the levo - thyroid hormone T4 - that is causing the problems, it's lack of T4.
I just want a western doctors opinion.
I wouldn't recommend that! They don't know any more about thyroid than doctors anywhere else. Doctors just don't learn about thyroid in med school. Patients learn about thyroid in order to survive, because otherwise, the doctors might kill them! But, in any case, there are no known doctors on here. This is a patient-to-patient forum. And all the better for it!
Docs here are putting down to anxiety?
All doctors everywhere put hypo symptoms down to anxiety because they know nothing about symptoms. They don't even know that anxiety is a hypo symptom.
So TSH is way over-range and free T4 is way under-range. So, greygoose is absolutely right - you are under-medicated ... but if these results are from October and you only increased your meds a month ago, these results pre-date your dose increase.
50 mcg is a usual "starter" dose, so you re likely to need another increase wen you have been on this dose for 6 - 8 weeks.
I;m sorry - you must feel dreadful - a TSH of 56 isn't "managing" your thyroid naturally - it's the result of a very ill person - and now it's even worse. Someone without thyroid issues would not have a TSH of more than 2 [and free T4 a good 2/3 through the range rather than under it]. Stopping your meds completely would be a MAJOR mistake ...
But as you're interested in natural remedies, it's worth testing your key nutrients - ferritin folate, vit D and B12. These need to be optimal, but for man of us hypos, they're not. You can boost many of them with diet - but again should take supplements if they're dangerously low x
Thank you both of you for your answers and advice. Just one last thing to clarify- I was increased to 50mg on 1st October. Do I need to take another blood panel or should I just take 75mg today?
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