Armour Thyroid and the 'missed'diagnosis of Hypothyroidism.

justy

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Hi all - been away a long time, but still lurking every now and then. Mainly been away due to an overalll improvement and so getting on with a busier life but also busier life leaves little energy for forums. I find i do better as well if i keep my computer use down.

I have been wary of posting about improvements as every time i have in the past i have gone on to have a major crash and it seemed like i was saying i was better when i really wasn't. The situation now is that i am much improved on where i was two years ago. I am not better and am currently in a mini crash (hopefully short!) in general i have more energy, less symptoms overall and more stamina. Still using my wheeelchair for longer trips and'walks' but able to go out frequewntly and do plenty of housework without much resting in the day at all.

I saw Dr Skinner twice since May and have been taking ArmourThyroid slowly working up my dose. His theory (which i do not necessarily subscribe to) is that many cases of M.E are actually Hypothyroidism that is not showing on labs - for various reasons. I know it's not a new theory, but he has made so many patients well that i thought it was worth a shot - i have many of the symptoms of Hypo and have spent time on Thyroid forums and the similarity of their symptoms to many M.E ones is striking.

Dr Skinner himself is an interesting man - kind, compassionate but very opinionated! The Artmour thryoid seems to be helping -although he seemed surprised at last consult that i wasn't 'cured' (alarm bells for me) I am now titrating up my dose till i hit two grains in the hope this will make me better, but its early days and i am not sure.

Yes i do feel quite a lot better - BUT i was improving anyway
summer is always a better time for me
i have been living in a caravan while my house is rented out for the summer so not much walking about during the day and no stairs etc.

I know there are others on the forums who take Armour or similar but are still ill with M.E/CFS and i was wondering what others experiences where with it. In my heart i believe it will help a lot, but i don't truly beileve it will cure me. I am one of those who has had a long near remmission before so this could just be my pattern anyway - and when i crashed down 5 years ago now it was very severe - dont ever want to go there again.

Well i am rambling now. But i felt the need to reconnect with my PR buddies and those who have helped me so much over the past years. Would also be interesting to see what others have to say about Armour, being Hypo or Dr Skinners theories.

All the best!
Justy.x
 

Beyond

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After years around I can say that Thyroid is an important part of the puzzle for many in these boards. I want to put my hands in some good dessicated thyroid to try!

I do not like the idea of being in porcine hormones for life though. Would prefer to find the deeper reason why thyroid started malfunctioning. Caledonia has this theory that in some cases thyroid is not working right because of glutathione depletion that causes HPA disturbances.
 

justy

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Hi Beyond - thanks for responding. For me the decision to take Porcine extract was a very difficult one as i am a vegetarian and come from a large vegetarian family and always said i would never take it. However a failed trial of Synthetic thyroxine two years ago and a falling T4 level and rising TSH (though 'within range') decided me to try. My husband knows its not veggie but i have chosen not to share this with other family members, including my children who would be very upset at the thought.

I agree that there must be something underlying - especially as the people Dr Skinner sees have bloods within range - but are foten extremely ill. In my case there are always tantalising clues in all the testing i have, but no one idea that can pin it all down. When i saw Dr Myhill she wondered if my two previous postpartum haemorrhages might have knocked out my pituitary a bit (sheehans syndrome) whihc is possible as i seem to have had hormone issues for years - but i was able to breastfeed.

Do you have a link to Caledonias Glutathione depletion suggestion? i know she has written a lot of posts so could be tricky to find - or maybe she will pop in here and discuss it.

Justy x
 

justy

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Beyond - are you able to find a doctor in your area who could prescribe? i get a private prescrition then source myself from a list, as i mentioned i had NO help at all from thyroxine (Levo) but this feels different somehow - definately a noticeable affect.
 

Beyond

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Beyond - are you able to find a doctor in your area who could prescribe? i get a private prescrition then source myself from a list, as i mentioned i had NO help at all from thyroxine (Levo) but this feels different somehow - definately a noticeable affect.
I live in Spain, and not in Madrid or Barcelona, so the situation is bad. I once travelled to Madrid and got tested by a naturopath, former allopath, that confirmed I had subclinical hypothyroidism with an 24h urine test, along with many many defficiencies and other problems like severe adrenal fatigue and low glutathione. For the thyroid that incompetent idiot gave me a prescription for... thyroxine. Yes it didnt help, and now my parents are wary of wasting thousands with another private doctor...

I have been to others for other problems and none helped. My story is quite crazy, I have been to like 20 doctors and my opinion of them is very radical. Of course I know some must be very good, like those that research and public ncbi studies and such, but the mayority are useless and at times dangerous. Specially here in Spain they are very greedy, arrogant and ignorant (notice arrogant and ignorant is a very bad mix).

What is very sad too is that this Mouton supposed expert was a pupil of another alternative doc - Hertogue and hertogue has studies proving that dessicated thyroid cures the symptoms of hypothyroid that synthetic hormones do not. So it was very bad luck to end with that expensive quack.

http://informahealthcare.com/doi/abs/10.1080/13590840120083376

I think I will rather try methylation according to my genes instead of trying to get a prescription - it would be too hard anyway. Although I would love to, my father seems open to find someone, if he is not super expensive lol.

Porcine thyroid works because it has t1, t2 and t3 in balanced proportions. It is natural and closer to our own hormones than a synthetic one. It has the "God´s touch". Your tests look normal because urine tests are way more effective at assessing hypothyroidism as it will be found rather easily in Google scholar.

I know too much and can do too little :mad:
 
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No way that many cases are hypothyroidism (alone). But I believe in those who say hypothyroidism is undiagnosed frequently. I think many of us have it as one facet of the illness, in the same way that many have OI.

It may be a chicken and egg situation. Some (not all?) hypothyroidism is an autoimmune disorder. I don't know much about this, so I am wondering too. Was I was genetically predisposed to hypothyroidism, and the viral triggers that started my ME/CFS were also what triggered it? Or I already had it, at a lower grade, making me more susceptible to the viral triggers taking hold. If I hadn't had thyroid issues, I bet I would have gotten ill anyway.

I think subset(s) of ME/CFS patients will always develop thyroid issues.
 

sianrecovery

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So pleased to hear you have seen improvement Justy. I remain on T3 - and function. It hasn't been a cure, I regard it rather as a patch over the immunological/infective issues, but it has given a life back. Not a perfect one by any means, and today I am really ill, but overall, definitely. Hope your upward gradient continues.
 

Sushi

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justy

I was on Armour (30 mg) for a couple of years. I was testing TSH, free T3, free T4 and reverse T3 every six months and all were in the optimal ranges. But, my thyroid improved fairly suddenly and I went hyperthyroid and got into trouble.

Some part of my protocol must have improved the thyroid. Since I am doing basic methylation stuff, maybe glutathione did go up.

Just a caution, get labs frequently if you are doing methylation work or other protocols that might improve your thyroid.

And, no, normalizing thyroid function made little difference in my overall symptoms.

Sushi
 

roxie60

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justy If you dont mind sharing what were your FT4 and TSH numbers before treatment. My new Endo is saying my FT4 of .09 is not an issue (how can they be so black and white, its 100th of a friggen point off the low). Anyway just curious what levels your Dr decided it was hypothyroid, thx
 

SOC

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@roxie60~
In case it's any help to you -- my last free T4 test was 2.5 years ago. The result was 0.56 ng/dl. My clinic says 0.6 ng/dl is the low end of normal and 1.1 ng/dl is the high end of normal.

I'm wondering now why my GP (who did the test) didn't comment on the continuously declining T4 or test again in the past 2+ years. o_O I was too sick to be paying attention, I guess. I continue to wonder why I pay the GP if I have to be the one keeping up with all this. :rolleyes:

@justy~
I've been taking Armour thyroid for something like 5-6 years. I'm happy with it. It certainly came nowhere near to curing me.
 

justy

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Seems it's pretty common for us M.E folks to go have Thyroid issues. My Doc has put me on currently 60mg (1 grain i think) and wants me to move up to 2. He believes that if you are experinecing some improvemnts but not fully 'well' then the disage is not high enough. I imagine that the higher dose of two grains will be too much for me. Have started feeling some advers symptoms after 3 weeks on 60mg (shaky, insomnia etc) his feeling is that Hypo symptoms will return (which can be similar to Hyper) when you body adjusts to the new dose but it is still not optimal. I have read of experiences of this on the Thyroid boards (symptoms returning, then upping dose, then feeling worse then evening out, then upping again etc) - i have been advised to push through symptoms for a while.

My doctor prescribes Armour on the basis of symptoms rather than testing (although he does like to look at T4 and TSH) I also have a problem with low iron and ferritin which he says affects Thyroid being taken up by the cells which can cause symptoms of being Hyper when actually one is Hypo. I am supposed to be taking iron religously to counteract this. When my iron is better then i may be able to lower my dosage of Thyroid hormone.

roxie60 i can tell you my resutls but they are in Uk format - not the same as in the states and i dont know how to change it to make sense to you. My T4 was 12.6 (range 12 - 21) and my TSH was 2.69 (range 0.5 - 5) after 3 months on 30 mg my T4 had decreased to 12.4 (The doc dsays thats normal asArmour contains T3, supplying the cells more directly than the T4, but i would have hope for the T4 to rise) and my TSH has gone down to 1.69.

Beyond from what i can gather having adrenal issues can make supplementing with Thyroid hormones difficult - giving you symtpoms of being Hyper even if you are not, or like me showing no improvement with Synthetic Levothyroxine (appearing intolerant to it)

I dont know how being Hypo (rather than having M.E ) would expalin all my mito results from Dr Myhill, plus all the other myriad of deficiencies i suffer from.

All the best,
Justy
 

roxie60

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thx justy. the TSH appears the same as here, although now my lab has the TSH range at 0.3-5.0. My last TSH a couple weeks ago was 4.76 but the doctor not concerned, then came back in room later and id blaming the HRT for the rise even though I am on lowest dosage .025. I think I found a Global Lab Values Link that lists USA and UK/Europe labe ranges.

Found the Global Lab Values link, lists USA and non-USA Lab ranges, hope it is hepful to others
http://globalrph.com/labs_t.htm#Thyroid

When you look at conventional units my FreeT4 was .09, the range starts at .08 but Endo thinks that its fine and my FreeT3 was 2.9, but I'm the poster child of health :confused:
 

Beyond

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I dont know how being Hypo (rather than having M.E ) would expalin all my mito results from Dr Myhill, plus all the other myriad of deficiencies i suffer from.
Yeah justy it doesnt explain that, it is just another symptom of the deeper cause... maybe glutathione depletion? Genetic mutations and something to trigger them.. leading to glutathione depletion? o_O
 

roxie60

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justy is there a thread where you discuss mito testing and results. I have wondered how one tests the vitality of ones mitochondria (confidently). I have fell for some time like every cell in my body is starving for something such that it feels like each cell aches(not sre this makes sese to anyone but me) and I had wondered if my mito may have an issue.
 

roxie60

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Beyond Yes, I have 2 SOD2 homozyg and 1 SOD2 hetero (at least the ones I am familiar are of interest to those studying), I also posted in the SOD2 thread that I am looking for the RS#'s for a couple of SOD1 SNPS.

Code:
SOD2 A16V  Rs4880      G GG +/+
SOD2      Rs2855262  T CT +/-
SOD1  G93A
SOD1  A4V
SOD2        Rs2758331  A AA +/+
 

SOC

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Seems it's pretty common for us M.E folks to go have Thyroid issues. My Doc has put me on currently 60mg (1 grain i think) and wants me to move up to 2. He believes that if you are experinecing some improvemnts but not fully 'well' then the disage is not high enough. I imagine that the higher dose of two grains will be too much for me. Have started feeling some advers symptoms after 3 weeks on 60mg (shaky, insomnia etc) his feeling is that Hypo symptoms will return (which can be similar to Hyper) when you body adjusts to the new dose but it is still not optimal. I have read of experiences of this on the Thyroid boards (symptoms returning, then upping dose, then feeling worse then evening out, then upping again etc) - i have been advised to push through symptoms for a while.

My doctor prescribes Armour on the basis of symptoms rather than testing (although he does like to look at T4 and TSH) I also have a problem with low iron and ferritin which he says affects Thyroid being taken up by the cells which can cause symptoms of being Hyper when actually one is Hypo. I am supposed to be taking iron religously to counteract this. When my iron is better then i may be able to lower my dosage of Thyroid hormone.
I'm at 60 mg also. I'm still thinking about the advantages and disadvantages of trying an increase. My TSH is just below 1.0, which is where I'd like it. I'll have to get a current T4 test to see what's going on there.

I wonder if your doc isn't the man who has a hammer, so everything's a nail. He knows thyroid problems cause the kind of symptoms you are having and so assumes that as long as you have those symptoms you need thyroid replacement. It's possible, however, that some of your low thyroid-like symptoms are caused by other ME effects and are not going to resolve with more thyroid meds. I'd be cautious about increasing Armour Thyroid to 120 mg (2 grains?) if your labs are okay. Maybe let your body settle with the current dose and consider a smaller increase if you think you need it in a couple of months...?
 

maryb

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Glad to hear you're feeling better justy, good to know about improvements however they come - you gave me a laugh - doing a lot of housework - living in a caravan........
Its just how I read it. Mind you just sweeping outside the door is about all I can do so sounds good to me.
I'm just going through the thyroid thing at present - I had a trial of thyroxine too and it gave me terrible palpitations, so I may end up on Armour as well. Let us know if your labs improve over time.