As many of you, I have been on a terrible rollercoaster the last 2 months.
I have been on Nature Throid for couple of years, felt great until I was under severe stress this year and was prescribed steroids and antibiotics this year.
To cut the story short - my GP told me to stop 195 mg of Nature Throid due to low TSH = 0.01, but top of the range FT3 and T4. I reduced meds dramatically (to 65 mg or less some days) mid-July and gradually was getting symptoms: swelling behind knees, then lymph node swelling, hair falling out, pulled several muscles, joint muscle pain and weakness, nails and hair breaking, now dry eyes, extremely dry skin, which feels hot and it burns, some acne and as per yesterday - dry throat. I am very tired and anxious.
I have resumed my 195 mg of Nature Throid 4 weeks ago, which was my original dosage prior to all this, but I am still getting the above symptoms...is this normal? I have an appointment with endo in 5 days, but I am barely functioning here is this all caused by abrupt reduction of thytoid medication?
It was a bit foolhardy to reduce so dramatically. You should reduce by quarter grain at a time. In any case, if your FT3 wasn't over-range, there was no need to reduce. Once you are taking thyroid hormone replacement, the TSH is irrelevant. It doesn't matter how low it goes. And, when taking NDT, the only important number is the FT3.
So, then you increased dramatically - how long were you on the lower dose? Your poor body probably doesn't know if it's coming or going! So, not surprising you have symptoms. I think you're just going to have to give yourself time to settle down, and see how it goes. Doubtful if labs in five days are going to give a true picture of the situation. But, if your endo suggests reducing again, resist with all your might!
Thank you greygoose , you are right, I should have never listened to my GP.
I have been now taking 3 grains (splitting 3 times daily) for over 4 weeks.
My t3 was 2.85 at the time of reducing (1.3-3.1), my ft4 was 20.9 (12-22). Was feeling fine apart from getting palpitations, tight neck and anxiety after taking the steroids/antibiotics cocktail...I understand that steroids could have set my thyroid as I was going already under severe stress and should have never been given prednisolone anyway.
Can symptoms go for such a long time even if labs are okay?
I had labs done about a week after resuming 3 grains (17.08) and t3 was 2.76 (1.3-3.1), ft4 15.2 (12-22). That was over 3 weeks ago...
How close to taking your hormone, did you take the steroids/antibiotics cocktail?
There's no telling how long the symptoms can go on. It takes a while for things to settle down. And, remember, a blood test only tests what in your blood, not what's getting into your cells.
I took steroids/antibiotics on the 6th and 7th of July, stopped on the 8th as they made a mistake (!), got palpitations, tight neck, hot flushes and GP took my bloods a week later and told me to reduce dramatically based on TSH. So that was within one week.
Right, makes sense, so is it 6-8 weeks I should wait ideally ( that would be another 2-4). Also worried if they are not getting into cells, meaning, should I check rt3 or adrenals? My iron is also not mid range...
Six weeks is best. RT3 has nothing to do with it. If you have your FT4 and FT3 results, you know how well you're converting. Adrenals is another thing entirely, but the only worthwhile test is a 24 hour saliva cortisol test, but you can't get that on the NHS.
So, if I've understood correctly, you were only on the reduced dose for one week - i.e. time between lowering your dose and raising it again? That's not really that long to have made so much difference.
I was wondering if rt3 could have been raised due to stress so I got those palps back after steroids/antibiotics.
What I meant was that on the 8th I was taken off steroids/antibiotics, stayed on 3 grains of Nature Throid for another week and then reduced significantly, actually for 4 weeks
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To add to it, after 2 weeks of reducing dramatically my ft4 dropped to 10 (12-22), t3 2.3 (1.7-3.1)
OK So, that was long enough to have a bad effect. So, now you've increased again, but it's going to take six weeks to get the full effect of the T4 in the NDT. So, you're not there yet. Things could get a lot better before you have your six week test.
The 4th week has just passed now and I am deteriorating. Could this be normal that I am still gettng new hypo symptoms ? Sorry, feeling really desperate here thanks for all these replies
No problem. There's no such thing as 'normal' when talking about thyroid. All our bodies react differently, so what is normal for one, is abnormal for someone else. All I can say is that it's not surprising that you're feeling so bad after all your body has been through - starting with the steroids that you didn't even need! Although, I don't think it was that that caused your TSH to be low. The thing is, it didn't matter if it was low, as long as your FT3 was in range. So, then a drastic reduction, followed not long after by a drastic increase - your body is stressed out. It's a complicated business, and nothing happens fast, where hormones are concerned, which is why we should do our dosing in small amounts and slowly. I'm afraid it's just a case of waiting it out. Be kind to yourself. Get plenty of good food, and plenty of rest. And, stay hydrated. Your body is sick, and needs to be treated as an invalide.
You could very well have high rT3, but it's nothing to worry about. It doesn't cause palps. It doesn't cause anything. It hangs around for a short time, then converts into T2. So, nothing wasted.
Update...I am back from endo and I cried in the hospital. She told me that I should have never been on 195 mg of Nature Throid and that I should reduce..asked me to get off meds as my symptoms are hyper and start with 30mg of Armour...I give up, just want to cry...
Don't give up the Armour, give up the endo! Endos know nothing about thyroid. I really don't think they should be allowed to see thyroid patients! That is my growing conviction.
Have a good cry and get it out of your system, and we'll talk about it in the morning. OK? Try and get some sleep. I'm off to give the dog his levo, and then I'm off to bed.
The first thing you have to realise is that most endos know nothing about thyroid - they think they do, which is why they feel entitled to give such bad advice to patients! - but they don't.
The silly woman doesn't even know that if you are hypo, you cannot 'go hyper'. It doesn't work like that. You can be over-medicated, but judging by your labs, you aren't over-medicated.
Symptoms can be confusing, they're not clear-cut, they can cross over. And endos have little idea what the symptoms are, anyway! So, we can ignore her comments, there. Do, not reduce or come off your meds - you know what happens when you do that! Just stay on this dose for the full six weeks, and see what the results say. And, if I were you, I would never, ever, go back to see this silly, dangerous woman, again!
Hey greygoose, I was just thinking of you. This woman was highly recommended on thyroid boards so this was such a dissapointment. I had a wonderful GP, who would have known exactly what to do in this case, but he is on chemo right now. He gave me books about iodine, gluten free and recommended sttm. I can see that steroids could have set off something in my body so I had palps etc and maybe developed "over" symptoms thanks to prednisolone. Another idea - my thyroid released some hormones by being stimulated and had or gave a transient "hyper" episode. Particularly worried about my blurred vision, akin burning and lymph node swelling everywhere...
I am not coping well to be honest, I have lost 7 kgs in 2 months...
But, you weren't having 'hyper' episodes, because your Frees were well in-range. It doesn't matter about the TSH and how low it goes, it doesn't mean anything. Your labs were good when your stupid GP told you to slash your dose, and that's what's caused the problems. You weren't taking the steroids long enough for them to set off anything. Prednisolone isn't going to do that sort of thing, anyway. I think you're barking up the wrong tree by focussing on the steroids. The problem was you slashed your dose, and then hugely increased it again, four weeks later. Your body was stressed by that, and is taking time to recover.
Actually, if a doctor gave me books about iodine and recommended STTM, I wouldn't think he was good, I'd be off like a shot!
I understand, but not sure why I developed tight neck after steroid antibiotics along with palpitations. This still remains...even though my results were fine (ft4 and t3).
Maybe adrenals? I have no idea
What I meant was he told me to educate myself , but he was the one who listened to my symptoms and prescribed Nature Throid and moved me from Eltroxin as I wasn't doing well on it...
Well, the steroids could have caused those symptoms, but they should be out of your system, now. I just doubt they did any permanant damage. Do you still have a tight neck and palpitations? Why were you prescribed steroids and antibiotics, anyway?
OK, so he does sound better put like that! lol You just picked on two examples that would raise my hackles and the hair on the back of my neck!
I still have tight neck and palps, my tight neck is the lymph node swelling, also have it in my groin and collarbone.
I know this is strange, but all this losing weight, acne and skin burning sounds like hyper, but it's not. My CBC, CRP and ANA tests are negative so no one knows why I have these symptoms as viral or other infection would show in bloods I believe. They even checked me for lymphoma.
He is great indeed, but I think I know what you mean
Acne sounds hypo; burning skin sounds like low B12. Losing weight can be a hypo symptom, too. I don't know anything about lymph. Aren't they usually swollen because of infection? I don't know if all virus etc. show up in the blood tests. Maybe they just aren't testing for the right one.
Have you had your nutrients tested? Vit D, vit B12, folate and ferritin? If they're not optimal, they can cause havoc.
I agree re acne, this is more like dry skin turning into acne skin.
B12 is top range.
There is no infection indicated...see I was pit on steroids for mild folliculitis...they have only tested full bloods, liver, CRP and ANA plus antibodies for lupus and RA.
Nodes are getting bigger as well vit D is mid range, folate okay too, ferritin 38 only, iron mid range...
Well, you need to raise that ferritin. Vit D should be around 100 - what is the range?
Have you been supplementing B12? Was it low before? Something I'm finding helps with burning skin - I was getting it on my feet and ankles - is Alpha Lipoic Acid. I've been taking it for a week, and it's helping already. But it was caused by low B12, leading to neuropathy in my feet.
The problem with low B12, is that the damage doesn't always resolve when you raise the level. Some of it is permanent. Have you checked the list of low B12 symptoms.
That skin sounds bad. But, I don't really know what could cause it - apart from the B12. You could always try taking Alpha Lipoic Acid, and see if it helps any.
Hey greygoose, I have decided to fly back to my home country and get tested for everything there as here i Ireland, it's a pain and waiting game. Maybe this is to do with something completely different.
Well, I think the patients care, but there's not much they can do about it. I agree with you, the NHS has hit the pits! All through mismanagement and ignorance.
Well, I don't have much experience of other systems, apart from the French Service Social. And that has it's problems, too. I'm happy for you that you can go back to Poland and get good treatment. Let us know how you get on.
I will be in touch - wish me luck! Btw thyroid seems fine, temp is 36.6 morning 36.9 midday, pulse 78 continuosly. Of course, when stressed,a bit higher. I was splitting doses of NDT throughout the day (3 times 1 grain), but maybe that's the problem? I used to take it altogether in the morning before it all went south
I took two last evening and developed palps, didn't sleep all night read the leaflet of Nature Throid, this could be overmedication over period of time..
It can be, but I am on a very high dose already (3 grains), leaflet says if I am not reacting to it and getting worse then I may be resistant or overmedicated. I should already feel better after almost 6 weeks of taking it, but there is no improvement I would even stop and start building it up again if I have to as it really is hard to say what's going on. My basal temp this morning was 36.8 and pulse 84..that is no undermedicated
Maybe NDT just isn't for you. It doesn't suit everybody. I got up to six grains, with no improvement and getting worse. And I built up ever so slowly. Personally, I wouldn't pay too much heed to the leaflet.
So my Vit D is apparently good...ferritin is low, but I don't think this would be the case. I have swollen nodes still everywhere, losing weight, poor vision, dry skin etc my bloods are excellent.
Well, it is high, but difficult to tell if it's too high at the moment, because you have so much else going on. But, you could always try lowering your dose slightly, see if it makes you feel better, just 1/4 grain.
Was thinking of that, maybe lowering by 1/2 grain and stay put for a week and doing labs again. So exhausted with it. Every doctor here told me I am overactive
No, leave it longer than a week before labs. At least two weeks, I would say.
You can't be over-active, because you're hypo on thyroid hormone replacement. You could be over-medicated, but that remains to be seen. You're only over-medicated if you feel better on a lower dose.
Ok, thanks! Could it be that I am also undermedicated based on above? My FT3 is top range though. I still take 3 grains, but I wake up with mild palps, basal temp is 36.6-36.7, extreme tiredness and muscle weakness, very shaky hands and legs.
Well, you could be one of those people that needs their FT3 over the top of the range. The only way to find out is to try increasing and see what happens.
I guess only way to find out is to add a grain (I used to take 4 grains before , but then had to come off it due to feeling unwell). Do you know how quickly I could see the difference?
Okay, I will work with that, but first waiting for rt3 to come back. I am just concerned I have hypercalcemia and being on such a high dosage of NDT in the first place. In March my TSH was 0.03 and both ft3 ft4 were top range exactly,was a little weak,but not major symptoms, calcium was fine. Was told to reduce by 1 grain and my TSH became 0.01 and ft3 fell to 2.85 (1.7-3.1) and ft4 to 20.09 (12-22)in July and now with hypercalciema and awful symptoms. I am puzzled as to why? I know Hashi can fluctuate. But is it possible that I have been overmedicated for years and it's only coming out now and my body cannot tolerate such a dosage? So many questions, sorry
I've never heard of a link between hypercalcemia and suppressed TSH - there could be, but I've never heard it mentioned.
As you have Hashi's, not only does everything fluctuate, but the hypo gets steadily worse. So, not surprising if you need higher doses. And, had you been over-medicated for years, I think that not only would your blood tests have reflected that, but your body would have complained a long time ago.
I don't think 4 grains is such a high dose. I've heard of people being on higher. I went up to six grains, myself, without ever feeling any improvement. You need what you need, and comparing your dose to other people's, is fruitless.
Thanks grey, this helps a lot. I think I should be okay with ndt since I was perfect on it for years until July.
Have some more answers. It seems my autoimmune has been activated and steroids possibly suppressed my immune system and then 'clever' doctors took my off my meds. I was tested positive for EBV antibodies (past infection, not current) and I am also being still tested for Lyme disease. Apparently these can be activated even if I was before. It's like a domino effect.
Polish doctors helped me a lot already. Great thing is that here you can get tested for Lyme without a referral any day of the week for 60-70 euro (Western Blot).
I am so speechless, they have almost killed me (when I developed a chemical reaction after 2 days of taking steroids antibiotics, they told me to take more steroids!).
Absolutely and I would encourage anyone to fly to Poland to get tested, it's not far away and easier! Even got rt3 tested in a normal lab and cortisol (saliva)...
Sounds wonderful! But, I don't think I'd survive another airport. Travelling is too much for me, these days. Then there's board and lodging to pay for. Not everyone can afford that sort of thing.
I understand, I honestly don't know how I survived that trip, adrenaline I think! I understand, but it is 4 times cheaper than lodging anywhere else etc. If you ever need anything grey, I will be always happy to help!
Anytime - we need to help each other in this chaotic thyroid mess
I start to get somewhere and more and more I am convinced of upping my dosage of Nature throid.
I think I get palps, brittle hair and I am jittery because I used to be on 4 grains feeling great until end of March this year...now on 3 and after reduction/stopping for 4 weeks!
Hey grey, hope you're doing fine. I have an update. My rt3 came back low mid range = 138 (90-210), so no issue converting. Had an appointment with an excellent endo in Poland. He told me I am having or had a Hashimoto flare up, he sees it on the ultrasound (black mass). Could be because of steroids (Every doctor here rolled eyes when I said I was put on 40mg of prednisone, which suppressed my autoimmune). Steroids or something caused a temporary overactivness, it happens with Hashimoto once gland is stimulated and drops excess hormones into bloodstream. Then stopping meds was a big mistake. He reckons I need to reduce by about 15-20% max, but he wants me to stay on 3 grains still for the next 6 weeks and do bloods again. He thinks if I am top range FT3 fastening, so by taking 195 mg, I might be going over a good bit.
Hi, excuse me, but I’m a little sceptic, here. As I said before, rT3 has nothing to do with anything. It does not prove you don’t have conversion problems, you cannot tell how well you are converting once you are on NDT. And, once you are on NDT, it doesn’t matter much, anyway.
Did you know you had Hashi’s? I don’t see how you could have had a flare up as your FT4 and FT3 were not over-range. That was never the problem. If you’d had a flare up, your FT4 would have been something like 33 and your FT3 11. They were in-range the whole time, it was only the TSH that was low, and that’s because you’re taking T3. I do know how Hashi’s works, and it wasn’t what you had. And, it wouldn’t show up as a black mass, anyway, I don’t think. Besides your ANA was negative. So, that doesn’t sound much like Hashi’s. But, anyway, what are your antibody readings?
I agree that stopping the NDT was a huge mistake, and that’s what I said. But, I cannot see why he thinks you need to reduce by 15-20% because your labs were good. Have the Frees now gone over-range? None of this makes sense to me, I’m afraid.
I mean converting T4 to rt3, because of adrenals, as I was off NDT for 4 weeks.
It's an autoimmune flare up, nothing to do with FT3 or FT4, my antibodies sky-rocketed. ATPO is over 1300 right now. I believe it was 900 in July.
I was diagnosed with Hashi years ago. When he compared ultrasounds from yesterday to last time he has seen me, that "black mass" wasn't there. Other than that my gland has no nodules etc.
Either way I could have also had an issue with adrenals back then because of steroids.
I understand that my ft3 ft4 were top range in July when it all happened, I had palpitations, flashes and was sweating a lot.
ANA was only checked end of August...realistically I needed my endo beginning of July when it happened. I am staying on 3 grains for now, but I agree with him that I should hold the dose for another 6 weeks and see how I feel and to check ft3 ft4 then again. I have high pulse, can't sleep at night, jittery. I am still recovering from my hypo symptoms. There have been too many changes. I was tested for every single thing here, all negative, including lyme, current EBV, MS, only waiting now for cortisol. Reducing meds July/August would induce antibody attack too, also would induce any dormant viruses bacteria, it's like a domino effect...would I not feel overmedicated when Frees go over range when I take them in the morning?
Not necessarily, no. But, I still think that if you'd had a Hashi's flare, it would have shown on your blood test results. But, you're right, there have been far too many changes!
'It's an autoimmune flare up, nothing to do with FT3 or FT4, my antibodies sky-rocketed.'
Of course an autoimmune/Hashi's flare up is to do with FT3 and 4. Antibodies rise just after an immune attack - they're there to mop up the scene of the crime, so to speak - and during the attack, FT3 and FT4 rise - you said it yourself, above, the cells dump their store of hormone into the blood. There wasn't much your endo could have done, at that point, except to tell you to lower your dose if your Frees went over-range, rather than to stop the NDT completely, like your GP did. But, your Frees didn't go over-range, so he wouldn't have done anything.
Back in Ireland now. Thanks for replies. Time most likely will tell, seems that symptoms linger for a long time. I guess stopping steroids abruptly must have caused palpitations and hot flashes back then since these were in range. I have heard that symptoms can linger for 2-3 months after labs are optimal so still a good bit to go! I am just afraid I increased too quickly (from 1 to 3 as per GPs request...) and after 7 weeks I am getting palpitations. Or would I be getting them straightaway?
I'm afraid I don't know. But, certainly, increasing and decreasing too quickly doesn't help anything. But doctors just have no idea! I really think you just need to sit it out for a bit, see how things go. Get more tests after six weeks.
Hey grey, hope you're not sick of me yet I have seen my consultant in the hospital today and he wants me to try t3 only. He says my results are very good and if I still get palps and I'm jittery, this might be an issue with t4 build up. Starting thybon in a few days at 20 mg x 2 a day for 6 weeks. Also, he thinks I might have lyme disease based on symptoms and test results, he wants to have me on doxycyclin for a month. Hopefully this all works and I feel like a human soon!
Well, that all sounds very positive! I think it's a good idea to try T3 only. As for Lyme, well, if you've got that, you would feel bad! It's a horrible thing, but some doctors don't even believe in it! So, you're lucky you've found one that is taking it seriously.
I hope I don't have lyme, but I'm sure will know once start antibiotics, apparently you can get worse on them if you have it. Have you much experience with t3? He says that my TSH will be very supressed after, but I might feel better
Hey grey, did bloods again at 8 weeks and I am stunned at results:
T3 = 1.7 (1.3-3.1)
FT4 = 13.9 (12-22).
My previous at 5 weeks of taking 3 grains of NDT:
FT3 (not T3) 6 (3-6.5)
FT4 = 18.6 (11-22).
The only thing I did was to reduce from 3 to 2 grains for 3 days to see if palpitations go away and then stop for 48hrs before test. Such a dramatic change? My tremors have increased, I suffer from insomnia for weeks and anxiety.
I understand, but should ft4 not be higher anyway even after stopping/reducing for a few days, does it not build up? It's total t3, they didn't measure ft3 here...
I know I am just feeling progressively worse so I don't know what to do.
You are right, I am trying to rush things. I am an anxious insomniac now. Even if everything seemed fine with my previous results, I didn't see any improvement...
Hey grey, hope all well...so here I am again. Back to work, some symptoms have eased or are gone: joint muscle pain and weakness, nails and hair breaking, dry eyes, extremely dry skin, which feels hot and it burns, dry throat. Stopped losing weight rapidly. Pulse around 68-72.
Still very fatigued, low bp with overwhelming brain fog, face turned oily with acne, troubles sleeping (racing pulse is waking me up and high cortisol), sometimes stiff neck, low stomach acid, body tremors, muscle twitches (a bit better now though...been taking a lot of magnesium).
Had my saliva tested for adrenals, my cortisol is high throughout the whole day, DHEA around mid-range (the stress of the last months + stopping/restarting meds drastically possibly...!).
I still have not been brave enough to up my dose to 4 grains from 3, in fact, I tried 2.5 grains, and my anxiety did ease a bit, but it made me more tired, but calmer.
My labwork now is:
TSH <0.01 (irrelevant, I know ,and my new endo knows too, so thank god...)
FT3 = 6.5 (range up to 6.8)
TT3 = 2.2 (up to 3.1)
FT4 = 19.1 (range up to 22)
ATPO antibodies = 880 (<5.61), did change from almost 1000
Vit D = 85 (30-125) improvement
B12 = 440 (197-771)
Folate = 6.4 (no ref range)
Ferritin = 34 (13-150) improvement
Low Estrogen/Low Progesterone
Potassium = 3.5 (3.5 - 5.3)
Sodium = 137 (133-146)
Low Urea, slightly high Red Cell Count
My TSH dropped from 0.03 to 0.009 and less, this might mean going up in dosage? My FT3 is within top-range (24hr fasting before test) and have no idea what it was in March, as they only tested FT4 (top range, 22) and TT3 (top range, 3.1). My TT3 is below mid-range.
I know you mentioned that some people have to have FT3 over the range to feel better, one of the doctors told me the same...I remember a time when I had FT3 = 13 (up to 6.5) and I had some mild insomnia, but felt great...
Also adrenals...how do go up without compromising them. 1/4 or 1/2 grain every 2 weeks. I have been on 2.5 grain for 2 weeks, today starting with 3.
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is this all caused by abrupt reduction of thytoid medication?
I have seen my consultant in the hospital today and he wants me to try t3 only. He says my results are very good and if I still get palps and I'm jittery, this might be an issue with t4 build up. Starting thybon in a few days at 20 mg x 2 a day for 6 weeks. Also, he thinks I might have lyme disease based on symptoms and test results, he wants to have me on doxycyclin for a month. Hopefully this all works and I feel like a human soon!
Desperate for help and advice!
Nature throid
Endo says high antibodies will not give any symptoms 
Hypo with POF, severe hair loss and scalp pain 
Letter from Dr to go in for TSH test ...taking NDT , he doesn't know ...advice please !
