Is CFS/Fibro just Thyroid Resistance?

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No type III is hypermobile (which I am not very...)
justy, sorry to hear u r sick when you were diagnosed with type 3 Hypermobility which I believe I have Vascular was this the hypermobility unit in London I have also the Osteopenia from Bone

Dexa Scan Spine which could put me in rare forms but still believe its Vascular type...I will be going to London EDS hypermobility in July I will know more then plus last year I had an echo ultrasound heart it showed dyastolic dysfunction

so I wonder where this puts me at type of EDS or crossovers...My Grandfather 'sudden death' heart at 53 my Father may have passed this on to me I have thin nose thin upper lip attached ear lobes almond type eyes plus elasticity skin not severe & thin skin veins showing hands legs chest thighs...
 
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leela

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@leela, which desiccated thyroid are you taking? Armour changed their formula a few years back, and a lot of people on it started getting hypo symptoms again. It made me feel like crap. Naturethroid worked great for me, though...
I was taking naturethroid. But as I said I could not tolerate it, even with a slow titration.
 

justy

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Sorry to hear this @Aidan Walsh - I was dx by a local rheumy, she flung the dx at me literally as I was walking out the door, handed me a leaflet and said she was discharging me.
 

mermaid

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People with hypothyroidism very often have a characteristic tone to the voice - rather cracked or hoarse. The face changes, and changes again with treatment. They are often very passive, not fatigued, but just passive and sleepy. PWME say that ME is not sleepiness and that seems to be confirmed by sleep studies, but hypothyroid people really are sleepy. They can also develop joint contractures, as Parkinson's disease patients do, with their immobility. I am not aware that ME leads to this.

In fact I do not really think that most of the features of hypothyroidism look much like ME at all.
When I first developed hypothyroidism I did indeed feel very sleepy. Also I remember when it really alarmed me was that I was at work and suddenly my brain refused to function on something that I had done lots of times - and that was very similar to brain fog that people talk about with ME (I don't have that a lot now, but know what it is).

With regard to the voice.......I have had spells since I have had the diagnosis of ME when my voice did go as you have described. My guess is that for some reason that my thyroid was not functioning well at that time, and that has happened from time to time. Some people who are hypothyroid believe that after a while thyroxine does not work well for them, perhaps because (for various good biomedical reasons) they are not converting well. I suspect that happened to me, hence changing over to T3 only. For one thing, I gained a huge amount of weight, so it's been good to shed 2.5 stone on T3 only, and then to stabilise for over a year.

Having tried my hardest over some years to check out any possible deficiencies which may be affecting my T4 to T3 conversion in the body, (there can be many reasons!) I am now slowly adding back a little T4 into the mix, having taken T3 only for over 2 yrs.

One of the things I have done since last writing on this thread, is to begin to take a small dose of Pregnenolone after doing an Adrenal Saliva Stress Test - taking it on the suggestion of Dr Myhill. I am now 63 so it's likely that my own body's production is falling in any case. At the time I began to use it I had had a relapse and was declining in health and caught bronchitis at the end of January, and relapsed further. Since then things have looked up for me, and my energy is improving again. If you ask an endocrinologist though, they will only take account of the adrenals if you are in 'crisis' Ie Addisons. Clearly I had not reached that level, but that doesn't mean that it was optimal.

The testing time for me is always winter though.... June is my best time of year, so I will see!! My energy levels are not normal yet, but are considerably better than many I know with ME/CFS. Hopefully with optimising both my thyroid and adrenals now, any other issues going on (am attending also to chronic digestive issues) can be focussed on without confusion on what is what.

With regard to the EDS diagnosis, I now know of 3 people in the UK diagnosed with EDS III hypermobility syndrome who were diagnosed first with CFS. I also am more mildly hypermobile, but do not think I am severe enough to merit that diagnosis.
 
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i just want to add that if you have HPA axys dysfunction, it is likely that you will have a problem accepting T3 into cells. First you need to solve HPA dysfunction.
That being said, over at the finasteride forum , we have something that resembles chronic fatigue, at least symptom wise. Some people are now doing HRT and doing better, actually they turned their life around. full adrenal cortisol repleacement, and full thyroid replacement with NDT.
Today I saw a study saying in patients presenting chronic fatigue from cirrosis or hepatitis C, Allopregnanolone was undetectable. In the finasteride studies that have been made to identify the problem with the persistent permanent side effects, allopregnanolone was undetectable.
This molecule has affinity for gaba, is released in stressfull situations and it seems that it is needed to protect dopaminergic neurons from degeneration, so much that it has been researched for parkinson's and it has been discovered the neurons regenerate on allopregnanolone.

I'm not saying its the same or whatever, I dont think it is, but I just wanted to leave here something for you to think about.
 

drob31

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i just want to add that if you have HPA axys dysfunction, it is likely that you will have a problem accepting T3 into cells. First you need to solve HPA dysfunction.
That being said, over at the finasteride forum , we have something that resembles chronic fatigue, at least symptom wise. Some people are now doing HRT and doing better, actually they turned their life around. full adrenal cortisol repleacement, and full thyroid replacement with NDT.
Today I saw a study saying in patients presenting chronic fatigue from cirrosis or hepatitis C, Allopregnanolone was undetectable. In the finasteride studies that have been made to identify the problem with the persistent permanent side effects, allopregnanolone was undetectable.
This molecule has affinity for gaba, is released in stressfull situations and it seems that it is needed to protect dopaminergic neurons from degeneration, so much that it has been researched for parkinson's and it has been discovered the neurons regenerate on allopregnanolone.

I'm not saying its the same or whatever, I dont think it is, but I just wanted to leave here something for you to think about.
Based on my experience lately, I agree with you assessment here.

Pregenelone was the first thing that turned my lights on after a year of experimenting and trying different things. I had to go really high, 100 mg/day, which I've been on for 2.5 months. I've read that people with HPA-axis dysfunction can handle way more.

In any case, you're right about not being able to handle thyroid hormone when your HPA-axis is messed up. There were times in the last year or so when my neurotransmitter and hormone levels shifted for a short period of time and I felt good and normal. I'm not sure what caused them to become so far out of whack besides tons of stress, stimulants and months of non restful sleep--but I suppose that's enough.

In my case I haven't tested for Hep-C, but my liver values and GGT levels are always perfect, and I don't have jaundice, although the symptoms do worry me as they seem similar.
 
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I've been thinking about the Thyroid connection a lot lately. I have a new doctor who has told me my chronic high C-Reactive Protein levels are because I am still making TPO antibodies. Apparently this causes all over body inflammation. This is the first time I have ever heard this from a doctor. Every other doctor has said it is a mystery. My insurance still, however, does not pay for any thyroid tests besides TSH and the standard T4 and T3 levels testing.
So, I have found two places online that offer extensive lists of thyroid tests you can order. If anyone else is interested, these are the online labs. Just do a search using the keyword thyroid.
http://requestatest.com and
https://directlabs.com

Here's one more. This one has good combination thyroid panels: http://www.walkinlab.com

If I end up with a lot of reverse T3, I am hoping I can convince this new doctor to prescribe me some T3 instead of T4 only.

Have they come up with an immunosuppressive that works on Hashimoto's yet? Apparently synthroid doesn't stop the antibodies for absolutely everyone like they used to think. Imagine that?:bang-head:
 
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