Stopping Armour - more ill than ever!

[justy]

Long story short.

Been taking Armour for 4 months, gradually increasing dosage. Felt better for a while, now feel much much worse. Am going to give Armour the heave ho ofr a while and see if that helps.

Pretty depressed that i am more ill now than i was before i started with all this Hypo stuff with Dr Skinner.
Now have severe disabling dizziness, look terribly pale, no energy, hari falling out and T4 now dropped out of normal range.

Could be:
High reverse T3
Low iron
Adrenals

I know my iron is low, but have been supplementing this for at least three years daily with little improvement. Nobody really interested in sorting this out for me.

rT3 - not sure abou this and not able to pay for tests privately (Genova do one costs nearly £200 and includes T3 AND rT3)

Adrenals - very likely due to my symptoms - i have Genova saliva jit in drawer in kitchen but finding it hard to part with the money for it when our family finances are so dire. BUT think i will do this next week so can rule it in or out.

Hopefully is ok to just stop the Armour, even though my labs are now below range.

TC Justy. x

 

[Beyond]

I would say adrenals too Justy. The experts always say that adrenal fatigue must be dealed first or at the same time as thyroid (and most of us have AF to some degree, the more you have been sick I would say the adrenals are worse)

http://www.stopthethyroidmadness.com/adrenal-info/

It is insane that this (and everything else) is in the Internet, yet few doctors will know it and use it in their practice. I feel like I am in some ugly dream when I think of that.

 

[Ema]

I agree that it sounds like adrenals. I hope you can do the test.

As long as your thyroid can produce hormones, it is generally OK to stop T4 and T3 containing meds like Armour abruptly. You might have a banger of a headache for a few days though as your levels adjust.

Ema

 

[ihave3kids]

Hi Justy, I've been reading your posts on trying Armour under Dr. Skinner and have been meaning to reply for so long but I'd forgotten my password and have been busy with family life and having a bit of a relapse too. Your story is identical to mine. I'm a patient of Dr. Myhill and now Dr. Skinner. After improving so far following a paleo diet and Myhill's protocol, I decided to dig deeper into the thyroid thing. I'd tried levothyroxine with Myhill and I too had an odd reaction. Then I tried Armour but stopped because I felt more tired.
Anyway, I decided to give Skinner a try. So 3 months ago, I started with him. I was determined to get purely a thyroid doc on board and concentrate on my thyroid for a while. My highest TSH was 4.26 but it's around 3.65 now - no treatment yet. I'm assuming Myhill's supplements and paleo diet helped a little by reducing inflammation etc or calming the autoimmune side of things. So I've been given the same advice. Try Armour and build up to 2 grains. I'm such a chicken that I haven't started yet. I showed him a 24hr saliva test for my adrenals that showed adrenal fatigue and asked whether this is what has prevented thyroid treatment from working in the past. He thinks it's because I never got up high enough before and said I'd not given it a good enough try but I did levo for about 3 months before and was on my knees - literally. I just stopped it one day because I could no longer go on.
So the plan now is to just go with the Armour but I know in my heart that I'm going to end up worse off than I am now. I thought of starting on hydrocortisone before I start the Armour because I have some from Dr. Myhill but then I'm doing something different to what I agreed with Dr. Skinner.
It's all such a mess a d I'm paying out so much money that we just don't have anymore!! I just wanted to post to say you're not the only one who has been thinking about the hypothyroidism connection and trying to tackle it that way by seeing both Myhill and Skinner. I'll let you know how I get on but after reading your post, I think I'm going to end up in the same boat as you.
This should at least show Skinner that ME isn't just straightforward undiagnosed hypothyroidism. Two of his patients can't be an anomaly, surely.
Best wishes,
Michelle.

 

[Beyond]

It might be useful this thread for adrenal fatigue: http://forums.phoenixrising.me/inde...tisol-and-feeling-drastically-improved.12837/

I know myself I am gonna try it when finances permit. First I have to take care of leaky gut to some extent. I am also gonna try High Iodine therapy for thyroid at the same time, because is cheap and there are people here and in other boards reporting a marked improvement in hypothyroid symptoms.

 

[jeffrez]

Adrenals almost for sure. Sorry to hear it, I know firsthand how awful that is. Get that saliva test and get on adrenal supplements ASAP. Like Ema rightly said, it can take a while for your thyroid to readjust - a lot of weird feedback loops are involved. Just go easy and try to ride it out. Hoping you bounce back soon!

 

[bertiedog]

I think the adrenal thing is very difficult to treat. If they are only mildly fatigued or not functioning very well then a glandular like Isocort might be effective or alternatively something like Siberian Ginseng might be beneficial. But if you have been ill for a long time or had a lot of very stressful events over a number of years then your adrenals might not be capable of working properly. Alternatively it might be that there is a central problem with the pituitary not getting the messages.

Anyway you would end up the same way and it might well be that glandulars or herbs cannot help and the only thing that will help then is a steroid like hydrocortisone or Prednisolone. The difficulty is in finding a doctor who is willing to prescribe especially here in the UK where there is a one size fits all policy with the NHS.

I tried for years to eat well and lead a balanced lifestyle but I just got sicker and sicker and ended up in a state of extreme collapse in 2000 and had to give up teaching. Looking back the first adrenal symptoms started in 1980 so that shows how long some of us have to battle to find out what is wrong.

Luckily for me I found a knowledgeable doctor who recognised what was wrong when I did the 24 hour saliva cortisol test and also a blood test for the thyroid. Both the results were abnormal. Although the cortisol results didn't look that bad I did have very high DHEA-S, well over the range at all parts of the day and night and I also had severe symptoms of panic attacks and I was unable to control my blood sugar it was always dropping causing me to eat about every hour. I woke up every night with panic and couldn't sleep, it was horrendous.

The private doctor said that what was happening was my body was needing more cortisol but the adrenals couldn't produce this and instead was throwing out large quantities of DHEA. He put me on hydrocortisone and I needed around 25mg a day to notice a real difference. It was the first drug I ever wanted more of, up till then I used to react to everything and could only tolerate tiny doses of just a few drugs.

I was also put on Armour starting at 1 grain in divided doses and working up. I did experience some hyper episodes within the month and cut back on the h/c but then realised that I felt worse and needed it badly.

Six months later I redid the 24 hour saliva test and yes the DHEA was back into normal levels except at night when it was still over the range. I was still getting symptoms at night. The doctor said I would probably do better with a longer acting steroid and he gave me Prednisolone 5mg daily.

So I have been on the Pred, now at 6mg daily plus 2.5 mg h/c at 4 pm and 2 1/2 grains dessicated thyroid since the end of 2002. Both of these have made a massive difference to how I feel and what I can do. I am still not free of ME/CFS but I have lost 2 stones in weight and have lots of energy which unfortunately gets used up quite quickly so for this I use an oxygen concentrator.

Needless to say I am very grateful I have had this treatment and now I even get the steroid through my GP who accepts I probably had Sheehan's Syndrome because of loosing 4 pints of blood immediately after childbirth in 1975. It was December 1979 when I first got 2 weeks of flu and was never the same after with horrendous vertigo attacks that went on for weeks and also horrendous migraines and I suffered like this until 2002.

I have never had a vertigo attack since my hormones have been treated but I do still get terrible migraines. My GPs over time have all been concerned about my bones but when I had a DEXA scan 3 years ago they told me I had the bones of a young woman despite the fact I was 62 at the time! None of the doctors can understand why this is but I believe its because I take the T3, a small dose of natural Estrogen daily and also have lots of magnesium/calcium plus good levels of Vitamin D so I don't see if you need a steroid for your adrenals there is anything to fear.

Pam

 

[ihave3kids]

This thread is really useful to me. I tried a bit of hydrocortisone before -up to 10mg- but came off it because it wasn't doing anything for me. I think I need to go higher on it, so that I reach a level high enough to see improvement and then stay on it for a while before trying the Armour again. How long would it be necessary to supplement with the hydrocortisone before trying the Armour? Weeks/months?
Thanks, Michelle.

 

[L'engle]

I got worse on armour as well. I think an adrenal glandular is a safer place to start if you haven't tried that. I just started adrenal cortex by thorne and I think it helps somewhat but I have to find the right amount because a capsule every day interferes with my sleep. I might try adding a thyroid glandular after a while if I can get the adrenal glandular sorted out a bit. Somebody here also took pituitary glandular. (Ahmo I think is the username) but I've never tried those myself.

Iron is tough, too.

 

[bertiedog]

This thread is really useful to me. I tried a bit of hydrocortisone before -up to 10mg- but came off it because it wasn't doing anything for me. I think I need to go higher on it, so that I reach a level high enough to see improvement and then stay on it for a while before trying the Armour again. How long would it be necessary to supplement with the hydrocortisone before trying the Armour? Weeks/months?
Thanks, Michelle.

I think that its very individual. There is a train of thought that says a small amount of h/c lowers your own production even more and you end up worse. I was advised to start at around 20 mg in divided doses something like 10 mg on waking, 7.5 mg midday and 2.5 mg late afternoon. However for some people that would be far too much so I do think trial and error comes in.

If one is going to respond to h/c it happens pretty quickly. Usually you can feel a bit better within days. I was also advised that it was ok to take the Armour/dessicated thyroid at the same time as the h/c and build it up very slowly.

Pam

 

[justy]

ihave3kids (by the way, i have 4 ) Your story is also very similar to mine - as well as Pam's. That is wjy it is so useful to be on here and talk to other patients, i feel less alone. Dr Skinner did offer to prescribe steroids for me (he wasnt keen but i think he would do it).

Unfortunately i am now suffering horrendous dizziness and nausea and cant keep upright for long - GP thinks Labrynthitis, but looking on line looks to me more like vestiular neuritis or Vestibualr migraine (am getting flashing at times) This si really doing me in badly at the moment - all the advice is not to lay down too much as that interferes with the brain re setting itself - but if i do have this it may still be acute phase? i have headaches, severe fatigue, sore throat and earache that comes and goes.

I thought at first it was the Armour causing it,. but now not sure. That's what i hate most about this illness. Firstly i can never be sure if its the M.E, the drugs/supplements or another illness on top. Secondly i have been lucky enough to have some improements over past two years so that i am no longer in severe category and was starting to drive, go out, etc but literally EVERY time i see a marked improvement i then get a set back that takes months to recover from.

I can only conclude that there is something very worong in the immune system that will not allow me to get better, no matter how close i come to what looks like solid recovery.

I pray to God, The goddess, The universe, anything that will listen that i get through this quickly - i have heard over the past week so many horror stories of Labrynthitis etc taking months or years to cure and it comes with fatigue, brain fog etc which is going to cause my poor brain mitochondria to really suffer - apparently it causes brain fog becuase the brain is working so hard to correct balance and stop you being sick/falling over etc that you get very worn down very quickly - i allready have this so is a nightmare.

Am going to do the saliva test this week, then a few weeks of no Armour and let everything settle. -just need to be able to get through the next few weeks and then see where i am again.

Good luck to you all with treatments etc.

ihave3kids - pm me if you want to talk more in depth, would be nice to have contact with someone who is a patient of both like me.

Justy .

 

[bertiedog]

I was told at one stage I had Labrynthitis that was in the beginning but it would go on and on for month and as mentioned previously the vertigo didn't go till I was treated with h/c and dessicated thyroid.

Pam

 

[Symptomatic]

Unfortunately i am now suffering horrendous dizziness and nausea and cant keep upright for long - GP thinks Labrynthitis, but looking on line looks to me more like vestiular neuritis or Vestibualr migraine (am getting flashing at times) This si really doing me in badly at the moment - all the advice is not to lay down too much as that interferes with the brain re setting itself - but if i do have this it may still be acute phase? i have headaches, severe fatigue, sore throat and earache that comes and goes.

Sorry to hear this...I had my first go-round with severe vertigo just a few months ago, ended up in the ER. I couldn't stand, and if I moved significantly I would vomit. I was in the ER overnight, I finally started feeling better after they gave me anti-nausea and motion sickness meds. The worst of it lasted about 8 hours, but it took a full week before I felt right. They couldn't tell me what caused it, or whether it will happen again or not.

Feel better!

 

[justy]

Yes this is part of the problem - teasing out what is what and which came first - a real nightmare for anyone with M.E.

Really pleased as i've just been given a grant for study aids (am studying for a degree with the OU) and they will supply laptop, ergonomic chair and desk etc, but the implication of having brand new desk and chair in my bedroom with all the outgassing that implies has just hit me - and i was so excited about it

Will have to put the chair in the caravan for a while and then in the spare room - hope that is enough!

Adrenal test kit is now on the kitchen counter, has been checked and all instructions read - ready to go for it tomorrow.

 

[ihave3kids]

Hello everyone, thank you for making me feel welcome here. I was beginning to think that my reactions to thyroid hormones were something that I was imagining, especially after reading in Dr. Skinner's book that some patients develop a fear of thyroid hormones and blame everything that goes wrong on them!! Anyway, after reading that too little an amount of hydrocortisone can switch off the body's own cortisol production, I can see now that when I was on 10mg and feeling worse, that that's what was possibly happening to me. So I think I'll start off on 10mg and try to build up a bit from there but I will take advice from Dr. Myhill regarding this before I start.
I suffered badly from vertigo about 6 months ago and it was horrendous. I'd never had it before. It made me scared to go out alone because I thought I'd fall over in public. I also almost crashed my car due to it too because I thought it had gone away when it hadn't. It lasted for about a month but I found the cause. There was a huge chunk of earwax lodged in my right ear which came out one day. I'm surprised something that big could even fit in my ear but as I scratched inside my ear one day, I caught the tip of it and out it came!! Sorry - hope no one is eating lunch. I've not had vertigo since. I honestly thought it was another new ME symptom that I was stuck with but for once, there was a simple explanation.
I'm sorry to hear you are so poorly Justy. After getting your hopes up for Armour and Dr. Skinner the labryinthitis (or such like) must be a devastating blow. I'll pm you soon and maybe share adrenal results - would be interesting.

 

[Helen]

justy I agree with those who guess that you have adrenal problems. I have had them myself. Low blood pressure is one of the symptoms, so maybe you can have it checked. It leads to dizzyness and vertigo for many.
If you have low blood pressure you can try to add some salt that the increases blood pressure.
Liquorice contains a substance that slows down the breaking down of your cortisol. The effect of eating liquorice is that the cortisol stays longer in your body and it raises the blood pressure. Hope my explanation was understandable. But at least you can test if you can feel a bit better while finding out how to go further.
Maybe you can find some help here too:
http://www.stopthethyroidmadness.com/adrenal-info/

 

[justy]

justy I agree with those who guess that you have adrenal problems. I have had them myself. Low blood pressure is one of the symptoms, so maybe you can have it checked. It leads to dizzyness and vertigo for many.
If you have low blood pressure you can try to add some salt that the increases blood pressure.
Liquorice contains a substance that slows down the breaking down of your cortisol. The effect of eating liquorice is that the cortisol stays longer in your body and it raises the blood pressure. Hope my explanation was understandable. But at least you can test if you can feel a bit better while finding out how to go further.
Maybe you can find some help here too:
http://www.stopthethyroidmadness.com/adrenal-info/

Thanks Helen and hi!.

I worked with a herbalist for a couple of years and took licorice at one point and my low BP did improve slightly. Apart from the dizziness i have also recently had some near fainting spells wherte my BP dropped right out and then got a big surge of adrenaline to keep me upright. I have noticed some days when i feel partuicularly awful my resting pulse is very low - 48 the other day and im clearly not fit due to being so ill the last 5 years.

I think when i get the test results i may go back to workign with the herbalist for a bit 9perhaps before going back to Armour, steroids and all that implies - i have had a lot of problems with prescription drugs in the past causing me iatrogenic harm = steroids, antidepressants and antibiotics being the worse. The steroids wrecked my immune system, the antibiotics wrecked my gut and the anti depressants (only 2 doses 5 years ago) wrecked my mental health entirely and made me an absolute nervous wreck for approx two years.

I suppose weighing up between Dr M and Dr S then Dr M is more holistic, although her protocols are punishingly hard for a vegetarian with children to cook and look after on a very low income.

Best wishes all,
Justy x

 

[bertiedog]

Justy good luck with the saliva testing tomorrow, do please post your results here. I have learned so much about the adrenals over the years so might be able to help a bit. As mentioned previously I actually do various training courses through places like Genova because I have a diploma in nutrition and I am one of their practioners. I have ordered more than 20 adrenal and 20 thyroid profiles through them. In fact I have just ordered one for somebody today who is having problems with his thyroid and not getting much help from the NHS.

Until your hormones get more balanced its impossible to feel well but if you can do this then its amazing how much better you can feel. I am also one of Dr Myhill's patients but I note she now only talks about giving very low doses of h/c whereas she used to be quite happy to give at least 15 mg. In my case she is fine with me going up to 7.5 mg Prednisolone because of the Sheehans but I try and take less than this. I should also add that she did make me much sicker for a month when she suggested I switch to T4 only meds but they just made me super toxic. She was aiming for more normal thyroid results but this isn't what we are aiming for - we want to feel better!! (When you take any meds that contain any T3 then your TSH can go very low making the doctor think you are actually hyperthyroid. My TSH is always -0.05 on NatureThyroid and my levels are towards the top of the T3 range but that is what I need in order to feel well.)

Last week I bought a Fitbit One tracker and I am really pleased to see that I do at least 5000 steps daily and on some days its more like 6500 steps a day. When I look back to how ill I used to be it almost feels like a bit of a miracle so do hang on in there. I hope that Ihave3kids will also get the correct treatment and feel a lot better.

I also wanted to say that I did try glandulars and herbs but my adrenals were too far gone for them to help me it would seem. I often wonder if it could have been autoimmune because I did have antibodies to my thyroid.

BTW I am 65 years old now but don't feel it!

Pam

 

[mermaid]

Hi Justy,
Sorry to hear you are so poorly. I have replied to you on another forum (UK thyroid one) but if you are so unwell you may not have looked yet.

I thought I would join this thread as I have many similar issues though some are beginning to resolve. I hope your adrenal saliva test proves helpful Justy - I have done it twice now. Last year when I was still on T4/thyroxine it showed low pretty well overall the day, though the DHEA was OK. This year I have been on T3, mostly on its own but also with a little T4 at times. I have been using an interesting technique promoted by Paul Robinson (he's British) in his book Recovering with T3 called the Circadian T3 Method (CT3M) which involves using your circadian rhythms to help your adrenals recover.

It's a bit of a pain if you are a bad sleeper as you have to wake yourself up a couple of hours before your normal waking time, and then get back to sleep again. Mostly I could manage it and did it for around 4 mths this year. I am also on Dr M's regime though am seeing a different private Dr in the UK who uses similar techniques (Dr C Forsyth). I think all of this, and being on T3 only has maybe made a difference as my recent adrenal saliva test showed improvement, though I had a rather high first result which I think was a result of taking it too near to T3 maybe as it wasn't a reflection of how I feel first thing!

I too have had the vertigo issue, twice now and related to a virus, but luckily on both occasions it was only for a week. Maybe just a mild attack of labrythitis, but really scary, and always worst at night.

I have never tried Natural Dessicated Thyroid (NDT) but I don't think that Armour would be my first choice. One of the UK thyroid forums actually has a 'safe' list of places where you can order your own, and some is v cheap.

I have been lucky enough to get T3 only via an endo and my GP, and it was interesting to see how much i deteriorated recently when I added back in a little T4 again. My stomach problems were magnified and I had 4 migraines in 2 weeks.On T3 my temperature is much better, and my BP a bit improved though still not great.

I would say from my own experience that the thyroid/adrenal issues may only be part of the puzzle. I still think there are other things that may need working on, and it's a case of fitting all the bits of the puzzle together. In my case, I have been hypothyroid for 18 yrs now, and on T4 for most of that, and deteriorating, so maybe bits of my body have ceased to function as a result and they are not going to be healed so quickly. I think the gut issues are pretty vital to get right - and that's the area that is now working best for me, so hoping that the rest will follow in time.

 

[bertiedog]

I would just say that if your adrenals are very weak then taking T3 on its own could be a disaster. A trial of dessicated thyroid is much safer because it only contains a quarter of T3 to T4 but we know that this also can cause big problems with weak adrenals.


Pam