Is CFS/Fibro just Thyroid Resistance?

[mermaid]

@Jonathan Edwards We have 'met' last year on a different part of the forum last year where I was contemplating whether I really did have ME due to the fact that I had Hashimoto's diagnosed some years beforehand. At the moment I do think in my case that there are distinctions, especially as my symptoms worsened long term following whooping cough, as they can do with ME. I know this is an old thread however, I do think this is an interesting issue.....

Over the past few years I have gone on both ME and thyroid forums trying to unpick my own problem and wondering exactly what is what. It's not as simple as you seem to say.

A couple of years back I had a conversation on the phone with a well known ME scientist (I don't want to name the person as it was only verbal, and I cannot provide a link). I asked them the question re the thyroid and they had seen many ME patients and said that the thyroid was dysfunctional in a high proportion (it was over 70% quoted). The scientist said though, that 'however we don't know if the problem is upstream or downstream' and I guess that's still the issue. Maybe ME itself creates thyroid dysfunction rather than the other way round, so it's understandable that some people would then think of causation.

Also I have noted quite a number of people on thyroid forums who DO seem to have ME type symptoms. It's quite possible that they do in fact have ME rather than thyroid conditions, or in fact BOTH like I have but endocrinologists are generally held in some contempt by the forums for the rigid attitudes encountered in diagnosis and help. Women (and it's usually women.....) being treated by male endos (it's usually male) suggesting that their problems are chronic fatigue syndrome or depression is what is often encountered. The thyroid world seems to be as hidebound as the CFS world...

One thing I have taken in over the last few years is the general upset in the thyroid world over modern diagnosis using TSH only. In my own case I was diagnosed nearly 20 years ago, when 'borderline' cases were treated, but I wonder now if I would have been treated with T4 quite so readily as my TSH 'only' was around 4 or 5. I gather that the rules now suggest to some GPs that they should not treat until the TSH reaches 10, even though the ranges vary across the world, and are set lower in the US. NICE guidelines do suggest that doctors should also take into account symptoms if TSH is over 4.5 but I gather that many GPs do not follow this. My own GP told me that I knew more about the thyroid than she did, and that's certainly one issue encountered by others!

In addition, FT3 testing is now not done routinely in labs, and it's hard to get done on the NHS at all except under and endocrinologist, so there are a significant proportion of people whose TSH is normal and yet their FT3 is low and it's likely that sufficient conversion from FT4 is not happening (if FT4 is high for example). In my case after some years of T4 only treatment this is exactly what was happening, and yet I had to pay privately for the FT3 test!

By this time I had the ME diagnosis and hoped that changing my thyroid meds to T3 only would then supply the 'answer'. 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.

 

[Jonathan Edwards]

Dear Mermaid,
I realise that there may be complicated inter-relations between ME and thyroid disease. But I think they can be exaggerated. I am not sure where your ME expert got figures from but I have never seen published evidence supporting that. I am also aware that there is a lot of debate about how you judge hypothyroidism. (My view is that the TSH has to be the measure of 'whether you body thinks it is getting enough' because there is no other biochemical way of assessing that. It is effectively the body's own thyroid bioassay. There may still be similar symptoms but that raises different issues.)

But the point I was making was that although there may be features in common the reality is that people with hypothyroidism don't look remotely like people with ME. The way they talk, move, and think and the way they look is quite different.

 

[brenda]

@mermaid

I get my ft4 and ft3 done on the NHS.

 

[mermaid]

@brenda - yes it's true they will normally do ft4 if it is not at normal level, but they don't do that routinely if TSH is normal or suppressed. As for ft3 it's good to hear that NHS do yours, but I can assure you that from a survey on a thyroid forum it's getting rarer to get the ft3 done.

In my case even when I offered to pay the NHS to do mine (as a bit cheaper than going privately elsewhere) it took 3 attempts for the lab not to just throw my blood sample away, even though the form was specifically marked. In the end the GP had to ring the lab up and speak to the highest person there! (having already rung previously about the private arrangement). Unbelievable....

Also willingness for CCGs to prescribe T3 (liothyronine) is apparently being reduced too - heard problems with Dorset and Somerset over the weekend, though I think it can still be had on a case by case basis if an endo approves it (I hope!). It's v expensive now due to only one company in the UK having monopoly - over £100 for 28 tabs I believe.

 

[brenda]

Cheap European suppliers though.

 

[Aidan Walsh]

@mermaid

I get my ft4 and ft3 done on the NHS.

you may also be helped with 5mg of hydrocortisone plus making sure your iron/ferratin levels are good no-one can deny 24 hour cortisol plus low ACTH levels are in CFS all of this aside TSH levels could be causing thyroid 'type' symptoms I was put on low dose Prednisone it is the only medicine ever that made symptoms tolerable but did not

make me well I was followed by Dr. Beverly Pearson Murphy in Montreal she is a Senior Professor Endocrinologist very well respected she actually published a Paper on CFS Cortisol levels so Hormones are no doubts playing a role in CFS.Fibro even a Doctor years back published on I believe HPA Axis Dr. Mark De Meitrick I still think their is something

in desicated thyroid natural hormones plus the Doctor who invented T3 was qouted as saying Low Body Temperature is a hallmark of thyroid problems that should be not left out in symptoms...Adrenals/Thyroid/Pituatary are are linked together plus we have Neurologists saying Autonomic Dysfunction is the Brain where Cardiologists say it is the Heart or

Syncope who knows I have seen patients fully recover by having blocked jugular veins in the neck even a young girl in USA was years at Mao Clinic autonomic dysfunction diagnosis or POTS tried all kinds of meds then she underwent further testing her jugular vein was blocked she also was told Lyme disease as well a Paper just came

out of U.K. 27 patients in Radiology had blocked veins or increased spinal tap pressures...I have seen numerous success stories but all treatments where different one guy 9 months I.V. for Lyme 25 years sick he runs Marathons now including Triathlons he is fully well other guy Gulf War Vet treated for Qfever 18 months combo antibiotics

completely well another woman Europe M.S. diagnosis treated for Lyme completely well all 3 cases above could even be Gut bacterias SIBO etc no proof it is lyme or Qfever antibiotics long term could be killing other things even unclogging Blocked arteries...I will try post those story successes during this week...There is hope pray it's not Radiation I hope they are wrong...

 

[Jon_Tradicionali]

Dear Mermaid,
I realise that there may be complicated inter-relations between ME and thyroid disease. But I think they can be exaggerated. I am not sure where your ME expert got figures from but I have never seen published evidence supporting that. I am also aware that there is a lot of debate about how you judge hypothyroidism. (My view is that the TSH has to be the measure of 'whether you body thinks it is getting enough' because there is no other biochemical way of assessing that. It is effectively the body's own thyroid bioassay. There may still be similar symptoms but that raises different issues.)

But the point I was making was that although there may be features in common the reality is that people with hypothyroidism don't look remotely like people with ME. The way they talk, move, and think and the way they look is quite different.

May I ask what the difference is?

More specifically if you will please.

 

[Jonathan Edwards]

May I ask what the difference is?

More specifically if you will please.

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.

 

[caledonia]

For the record, I ran into a guy in my area who was disabled with CFS for 8 years (symptoms sounding similar to mine). He found Mark Starr's book on Hypothyroidism II, and determined that he fit the criteria. He started taking something like 5X the normal dose of thyroid hormone and that helped him about 80% - enough to go back to work.

 

[drob31]

I think that a huge reason thyroid hormone doesn't work for some is because of pre-existing HPA-axis dysfunction. Normal cortisol levels and rythm have to be in place before t3 can be accessed by the cells. Too low, and t3 isn't accessed, too high and it may cause cellular resistance to cortisol. This may be why people have all normal thyroid bloodwork but still have hypothyroid symptoms. This may also be why mega dosing t3 somehow over comes this. However, in my person experience, my cortisol levels were low. After using thyroid hormone they were way too high.

 

[Aidan Walsh]

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.

I now firmly believe that CFS Fibro M.E. Lyme will be names of the past it will turn out that 'all' are suffering from different types of genetic Born mutations Collagen deficiencies Ehlers Danlos Syndrome the most 'undiagnosed'

illnesses on this planet even some will have multiple types 'crossovers' there are no Cures but it has treatments & it is different in each type...It also can run in families from either Parent family members some can be just carriers there

are also reports published some family members can have different genetic types different symptoms the most common type Hypermobility has no diagnostic genetic blood test...There are also biopsies done as well Dr. Rodney

Graham from the hypermobility Unit in NW London says 95% of CFS/Fibro have undiagnosed forms of EDS he even claims in one Youtube video that Michael Jackson died from being on the wrong types of pain medicines he says just

from his photos his agility he was EDS Hypermobility he said he would still be alive today if this was diagnosed...MP Nicola Blackwood London was also told she had ME as a child she has now been diagnosed with Hypermobility with

P.O.T.S. she gets meds/injections in brain plus on a high salt type diet...Some EDS types like VEDS Vascular should not be on high Salt intakes there are treatments but no Cure...Hoping this info helps someone I will be going to this Unit above in London in July also Mast Cells behaving badly in EDS see Dr Anne Maitland pdf on

connection to MCAD/EDS she put out paper plus medicines diets also link on Youtube as well she collaberates with Dr Rodney Graham she is an Immunologist/Alergist in New York City N.Y. Harvard MD Phd...Mast Cells Activation Disorders very well put together presentation 'all' had hypermobility also 9 patients all had normal tryptase levels on

systemic mastocytosis so was my results lately she also mentions some have immune deficiencies as well MCAD I was just tested last week at Southampton General Hospital no CVID no immune deficiencies they now suspect EDS type(s) I also had abnormal Dexa Bone Scan Spine 'Osteopenia' which likely pushes me into rare type of EDS

possibility...'Sudden death' also my Grandfather 53 died heart Father's Dad possible 'Vascular'??? I have attached ear lobes thin nose thin upper lip elasticity skin not extreme hypermobility but pass all physical scale testing also

hand palms on floor...Hope this helps people to think these 'labels' given out could be Complex EDS I know numerous all coming back with a new diagnosis it also comes with numerous complications as well...

Who knows time will tell...blesses be well soon...median age 48 with Vascular but numerous do grow into ripe old ages...Heaven can wait I'm not ready for Angels yet 's I have surpassed 48 's

 

[leela]

I don't know how or if this contributes to the conversation but I have
low T3
very high TSH
very low Vit D
cannot tolerate even 1/4 grain of natural dessicated thyroid --exacerbates hypothyroid symptoms
cannot tolerate 1/2 grain--brings on very unpleasant hyper feeling
cannot tolerate iodine supplementation-- " "
have high EBV titres

I think Cort wrote an article a while back on how EBV, through molecular mimicry, blocks thyroid receptors

 

[justy]

I now firmly believe that CFS Fibro M.E. Lyme will be names of the past it will turn out that 'all' are suffering from different types of genetic Born mutations Collagen deficiencies Ehlers Danlos Syndrome the most 'undiagnosed'

illnesses on this planet even some will have multiple types 'crossovers' there are no Cures but it has treatments & it is different in each type...It also can run in families from either Parent family members some can be just carriers there

are also reports published some family members can have different genetic types different symptoms the most common type Hypermobility has no diagnostic genetic blood test...There are also biopsies done as well Dr. Rodney

Graham from the hypermobility Unit in NW London says 95% of CFS/Fibro have undiagnosed forms of EDS he even claims in one Youtube video that Michael Jackson died from being on the wrong types of pain medicines he says just

from his photos his agility he was EDS Hypermobility he said he would still be alive today if this was diagnosed...MP Nicola Blackwood London was also told she had ME as a child she has now been diagnosed with Hypermobility with

P.O.T.S. she gets meds/injections in brain plus on a high salt type diet...Some EDS types like VEDS Vascular should not be on high Salt intakes there are treatments but no Cure...Hoping this info helps someone I will be going to this Unit above in London in July also Mast Cells behaving badly in EDS see Dr Anne Maitland pdf on

connection to MCAD/EDS she put out paper plus medicines diets also link on Youtube as well she collaberates with Dr Rodney Graham she is an Immunologist/Alergist in New York City N.Y. Harvard MD Phd...Mast Cells Activation Disorders very well put together presentation 'all' had hypermobility also 9 patients all had normal tryptase levels on

systemic mastocytosis so was my results lately she also mentions some have immune deficiencies as well MCAD I was just tested last week at Southampton General Hospital no CVID no immune deficiencies they now suspect EDS type(s) I also had abnormal Dexa Bone Scan Spine 'Osteopenia' which likely pushes me into rare type of EDS

possibility...'Sudden death' also my Grandfather 53 died heart Father's Dad possible 'Vascular'??? I have attached ear lobes thin nose thin upper lip elasticity skin not extreme hypermobility but pass all physical scale testing also

hand palms on floor...Hope this helps people to think these 'labels' given out could be Complex EDS I know numerous all coming back with a new diagnosis it also comes with numerous complications as well...

Who knows time will tell...blesses be well soon...median age 48 with Vascular but numerous do grow into ripe old ages...Heaven can wait I'm not ready for Angels yet 's I have surpassed 48 's

The NHS in the UK have recently dx me with EDSIII and Mast cell activation yet they offer me NO follow up, no real treatment no further investigations and what's more they STILL think I have 'CFS'.

 

[justy]

Hi Cig -long time no see!
Its interesting that you post this now aas i have just started on Thyroxine (T4) My Thyroid tests have been within normal range -although looking bck over the past 5 years my T4 has been steadily declining and starngely mt TSH has been high and now lowish -i dont have antibodies. BUT i do have a low body temperature and a very low resting pulse even though i am no loger super fit or athletic. Dr Myhill thought i might have Sheehans syndrome after having a lot of blood loss in two births and so thought as my results where low normal and i have a lot of symptoms we should try it. Ive started on a very very low dose to make sure i dont react badly 12.5 mcg for 2 weeks have just upped to 25mcg a day and in two weeks will go upt to 50mcg a day. My GP has been very supportive of the idea and is monitoring my bloods. Its very early days but so far i have felt initially agitated then that calmed down. Now i feel a little bit better - i definately have a biot more neergy but have started to overdo it - as usual and am experiencing bad PEM.

Ive been reading through some Thyroid boards and im struck by how very simialr our diseases are, as you say even including PEM which i thought was a hallmark symptom of M.E. Its got me thinking as to wether i have hypothyroidism instead -in a way that would be marvellous if i could take a drug and get better, on the other hand iwas surprised that more of the people on the boards didnt think they might have M.E instead especially when as you say it cn take a very long time to get the meds right and some seem to remain significntly disabled and ill.

At the moment tho im just taking the advcie of the doctor and trying what she suggests (otherwise what was the point in spending all that money!) if after a few months there is no substanital improvement then i might try T3 or Armour but for now im going to stick with the T4. Another reason for us thinking of the Thyroid is that i definaetly have a screwed up metabolism -i gain weight from eating very little and cnnot lose wiehgt. Even when i was well and did a very physically demanding job i was still overweight and ive been on a very restricted diet for a long time. Im really praying this helps me.

Just wondering how you got on with the Methylation support -i know youve been trying lots of different things to get well and im wondering what has helped the most.
The iron thing interested me as ive had very very low ferritin for years -is this related?
All the best, Justy.x[/QUOTE





Update on my post from a couple years ago: 14/06/2015 9sorry cant make this text outside of quotes.

The Thyroxine didn't work out well - no response at all then I felt hyper only my labs were completely normal range. Dr M says this happens to a lot of her patients who try Thyroxine. we left it at that.

Then in 2013 I saw Dr Skinner who believed all M.E was undiagnosed subclinical thyroid disorders. He gave me Armour and I felt better than I had in years - had one really great summer and then the awful crash came and I was having very severe dizzy spells and all my symptoms got much worse. I stopped the Armour and it took a good few months for the dizziness etc to subside. I have never got back to the level I was at before I saw Dr S and took the Armour.

Since then I did a saliva cortisol test and found normal in the am, then cortisol dive-bombs at midday and stay very very low till the next morning. My DHEA was appallingly low - I tried supplementing with this but couldn't tolerate it.

Now I have Lyme dx with KDM and he says the thyroid problems are down stream effects. My TSH is now 3.45 and T4 11 yet I daren't supplement after the issues I had before. for now I just leave it alone and focus on other stuff.

 

[brenda]

@justy

I had the same problems with my thyroid which my gp won't treat despite hypo symptoms such as low temp, dry skin, disappearing eyebrows etc. I did badly on Naturethroid and then T3 but am going to try circadian dosing once l am well into my Lyme treatment which l have just started with rifing. I have had one session and a herx lasting one day and have been feeling a slight improvement.

 

[out2lunch]

Have you had any adrenal tests done? High RT3 is often caused by high cortisol.

My RT3 was very high, but elevated cortisol was not the cause. Iron deficiency was my culprit.

Once the iron deficiency was diagnosed and treated, the RT3 returned to normal, along with my TSH, T3, and T4. Dosing with my desiccated thyroid is no longer the moving target nightmare it's been for the past several years.

 

[cigana]

I am afraid this does not make much sense to me. I have recently come into contact with a number of people with ME. Over the years I have also looked after a number of people with hypothyroidism. I see no resemblance really. People whose tissues are not responding to thyroid hormone, at least the ones where that is because they do not have enough thyroid hormone do not look or behave or report symptoms like PWME at all. You talk of people making money. I have a strong suspicion that a number of 'hormone doctors' are making quite a nice packet out of theories about people needing thyroid replacement.

Sorry for the late reply and thanks for your thoughts. I think you make a very good point about PWC's not looking or behaving like those with low thyroid. In the end I was not able to find any reliable evidence for this theory...

 

[skyebean]

@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...

 

[Aidan Walsh]

The NHS in the UK have recently dx me with EDSIII and Mast cell activation yet they offer me NO follow up, no real treatment no further investigations and what's more they STILL think I have 'CFS'.

type 3 Vascular?

 

[Aidan Walsh]

@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 heard of a woman put on 2 types thyroid not natural ones thyroxine other I think tetroxine within 2 hours her illness lifted 'unlimited functioning' my T3 2013 was 2 points higher than normal not sure of the recent results...