Is CFS/Fibro just Thyroid Resistance?

[justy]

type 3 Vascular?

No type III is hypermobile (which I am not very...)

 

[Aidan Walsh]

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...

 

[leela]

@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]

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]

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.

 

[futuritycarpaccio]

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]

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.

 

[Mya Symons]

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?

 

[Artemisia]

I have been on T3 only for 2 yrs now, luckily for me via an endocrinologist. While I am on the whole better than I was on T4 only, it hasn't proved to be 'the answer' sadly. I have tried going back to T4 mixed with T3 but feel quite ill now on T4 at all, and as the hair on my legs stopped growing,and I had more hairloss from my head, I backed off but am thinking of trying NDT in the Spring which is disapproved of by the NHS so will have to go privately.

Hi @mermaid

This comment is from 2015 but I was wondering if you're still active here to tell me how much T3 only you were on?

I too have lots of trouble with any T4, even in a combo drug. But the trouble with T3 only is that I struggle to increase T3 much, either, though it is more tolerable for me. I get a burning sensation on my skin without a fever.

But when I stop all thyroid, I am totally wiped out, probably pushes me into severe ME category. I can cling to moderate ME, barely, with some T3.

The points made about EBV messing with T3 receptors are interesting.

 

[mermaid]

Hi @mermaid

This comment is from 2015 but I was wondering if you're still active here to tell me how much T3 only you were on?

I too have lots of trouble with any T4, even in a combo drug. But the trouble with T3 only is that I struggle to increase T3 much, either, though it is more tolerable for me. I get a burning sensation on my skin without a fever.

But when I stop all thyroid, I am totally wiped out, probably pushes me into severe ME category. I can cling to moderate ME, barely, with some T3.

The points made about EBV messing with T3 receptors are interesting.

@Artemisia Hello there. Hope you see my reply as I don't come on here much, but came to check something and maybe ask a question about something else.

I am still on T3 monotherapy after 11 years! I cannot recall exactly the amount of T3 I was taking in 2015, but it would have been similar to my current amount. I am on 50mcg over 3 doses. I think I went up to 55 mcg at some point, but 50 feels more comfortable for me.

Over the years I have managed to sort out other symptoms, and am very much better than in 2015. I had a lot of migraine aura, but using natural progesterone cream sorted that out for me a lot (I am post menopause aged 72 next week). I had long term digestive issues, but I am hugely improved from that too. Also I used to get a feeling that I was always 'going down with something' and I pretty much cured that in a very odd way. I used to get a lot of nasal pain in my sinuses and with it this awful ill feeling. Someone in a health shop I used to visit, asked if I sterilised my toothbrush. I began to do that, every day without fail, pouring on boiling water, and using a drop of Oil of Oregano in the water where I left it until the next day. the sinus issue disappeared!

I moved to a different part of the country, which may be a coincidence, but for the past 2 years, I have been really well in the summer, building up to doing 10 hrs+ on my allotment in 2 shifts. However in the winter, my immune system may pick up viruses, (2 last winter), and I can go downhill fast then, and take weeks to recover.

I have just found out via a blood test done for an upcoming operation that I have high haemoglobin slightly above range, Also my red blood cells and haematocrit are high in range. I checked back into my test results and was surprised I had never noticed it before but have had high in range results on all 3 since 2011. I don't have any results online via my Dr before that, but I will be asking about my records to see if they exist anywhere. I also have low platelets, always below range also since 2011. Both conditions have fatigue as a side effect, so this could well explain some things to do with my ME or maybe it's just CFS! I am just off to take a search on here, to see if anyone else has this issue.

 

[Artemisia]

I am still on T3 monotherapy after 11 years! I cannot recall exactly the amount of T3 I was taking in 2015, but it would have been similar to my current amount. I am on 50mcg over 3 doses.

Hi! Thanks for getting back to me! I'm glad you're doing better than 2015.

50 mcg is a lot of T3! And just in 3 doses.

I am so sensitive to thyroid. I'm at 17 mcg T3 right now, and even that is a struggle. I chop it up into tiny pieces and take little bits throughout the day, usually with food. Yet I still feel this overheating, feverish feeling from it, though my temp's normal. I recently added in 1/4 grain of NDT so I am getting a bit of T4/T3 combo, but the T3 alone is much higher. Both forms make me feel like I'm burning up.

natural progesterone cream

Nice!

I moved to a different part of the country, which may be a coincidence, but for the past 2 years, I have been really well in the summer, building up to doing 10 hrs+ on my allotment in 2 shifts. However in the winter, my immune system may pick up viruses, (2 last winter), and I can go downhill fast then, and take weeks to recover.

I'm interested in how locations affect our health, so I'm curious -- did you move to a more rural area? Any change in weather? I imagine in the UK most areas are damp and cool, but maybe your new house has more ventilation and less dampness /mold? It would be interesting to consider.

Thanks again for sharing your experience with me.

 

[mermaid]

Hi! Thanks for getting back to me! I'm glad you're doing better than 2015.

50 mcg is a lot of T3! And just in 3 doses.

I am so sensitive to thyroid. I'm at 17 mcg T3 right now, and even that is a struggle. I chop it up into tiny pieces and take little bits throughout the day, usually with food. Yet I still feel this overheating, feverish feeling from it, though my temp's normal. I recently added in 1/4 grain of NDT so I am getting a bit of T4/T3 combo, but the T3 alone is much higher. Both forms make me feel like I'm burning up.

Nice!

I'm interested in how locations affect our health, so I'm curious -- did you move to a more rural area? Any change in weather? I imagine in the UK most areas are damp and cool, but maybe your new house has more ventilation and less dampness /mold? It would be interesting to consider.

Thanks again for sharing your experience with me.

Hello again @Artemisia
It does sound as if you have a real sensitivity with thyroid meds then. I haven't come across that. I guess it could be one of the fillers? Have you investigated that as a possibility, rather than the thyroid itself?

Have you actually been diagnosed as having an underactive thyroid via blood tests? It must be very difficult to deal with. Are you getting help, or doing this alone?

Curiously I have moved from a much less polluted area to a polluted city, or the edges of it, so not quite so bad, and yet I am improved. One of the reasons I think is that I had a particularly bad spell after some months here of what seemed to be an allergy. I had had the same though in my old place, but not as severe. It did me a favour as it pushed me into buying an air purifier, and it's amazing how helpful it has been for my health. I went away this week and could tell the difference where I was staying.

As to the climate, well I would not say that all of England is damp and cool. The further east you go, the drier it gets, though not necessarily warmer. I was living in the far South West where it was damp for sure, and though not cool exactly, it was by the sea, so didn't heat up as much as inland. There were mould issues, though I had sorted them out in the house. Now I live on the outskirts of London, inland, where it can get very hot indeed in the summer, and drier.

However this year is unusual, as we have had a very wet winter, and the rain has continued on and on through a cool summer so far. I prefer it hotter and drier, but hot weather can also be a tad exhausting. I have an allotment, and I have to get a couple of buses to get over there and water it, but no such need this year except in the polytunnel.

I know there is a thread on here with a man who feels a lot better re energy in the sunshine, and I am similar, and seem to be very influenced by the seasons.

Edit note: I meant to say that 50 mcg is not considered a very large dose if you are just on this thyroid med and nothing else. I am on a couple of forums that just deal with T3, and 50 mcg (divided in 3 doses) is quite modest compared with some there.

 

[Artemisia]

I guess it could be one of the fillers? Have you investigated that as a possibility, rather than the thyroid itself?

Have you actually been diagnosed as having an underactive thyroid via blood tests? It must be very difficult to deal with. Are you getting help, or doing this alone?

I don't think it's the fillers because I've tried at least a dozen different types and formulas of thyroid over 10 years and different dosages... always difficult tolerating. Even just thyroid glandular gives me this reaction. Even chicken neck soup in Mexico where the thyroid glands are in tact (unlike the US where it's legally required to removed them)!

I'm my own "doctor" for many reasons. My TSH was 3.5 or so last year when I was on a lower dose of thyroid so most docs would consider that normal. But every time I've cut out the meds it's an absolute disaster and I cannot function. At all. So I put up with the overheating on small doses.

I'm glad you're doing better in your new place!