Severe ME Day of Understanding and Remembrance: Aug. 8, 2017
Determined to paper the Internet with articles about ME, Jody Smith brings some additional focus to Severe Myalgic Encephalomyelitis Day of Understanding and Remembrance on Aug. 8, 2017 ...
Discuss the article on the Forums.

Is CFS/Fibro just Thyroid Resistance?

Discussion in 'Thyroid Dysfunction' started by cigana, Jul 31, 2011.

  1. cigana

    cigana Senior Member

    Messages:
    970
    Likes:
    783
    UK
    Hi,

    I have been wanting to post about this for a while, I am really surprised that there is no thorough discussion of thyroid illness on this forum.

    I have been reading a lot lately about the work of Dr John Lowe and Dr Barry Durrant-Peatfield. They are two of the most outspoken members of a number of physicians around the world who argue that a type of hypothyroidism, known as Thyroid Resistance or Type II Hypothyroidism is largely responsible for CFS and Fibromyalgia.

    Thyroid Resistance is the inability of your cells to properly respond to thyroid hormone. It is analogous with Insulin Resistance / Type II Diabetes.

    The most important thing I want to get across to people is that this cannot be detected with blood tests. If all of your thyroid blood tests are normal, that does not mean you are not hypothyroid. So how do you know?

    That brings me to the second thing I really want to stress: the best indicator of hypothyroidism is the presence of symptoms along with a low basal temperature. It has been shown that this is a far more accurate prediction of your metabolism than thyroid blood tests. All of you on this forum have the symptoms because they are the same symptoms as CFS/Fibro (including classics like post-exertional fatigue and alcohol intolerance). How many of you also have a low basal temperature? This poll would indicate most of you:

    http://forums.phoenixrising.me/show...s-Your-Body-Temperature-Rethinking-98.6/page5

    I hope everyone who falls into this bracket will consider the possibility. I fall into this bracket and have begun taking thyroid hormone. So far I am on about 4 times the dose of a typical hypothyroid sufferer. This is far more than enough to make a healthy person hyperthyroid, and yet I feel no different, which to me is proof positive that thyroid hormone is not getting into my cells.

    For those of you not aware, thyroid hormone is what is responsible for energising every cell in your body, so it is not difficult to explain the miriad symptoms of CFS/Fibro as being the result of thyroid insufficiency.

    It is also interesting to consider the history of diagnosis. Doctors used to diagnose based on symptoms and temperature, and treat with natural thyroid hormone. In the 80's, the TSH blood tests and artificial hormones began to be marketed. The result was that less people were being diagnosed as hypothyroid and hence "CFS/Fibro" emerged (as we all know around the same time). We should not see the "thyroid" community as being different to our own - we all have the same symptoms.

    Finally I would also like to point out that there is money to be made by companies who both market the blood tests and sell the artificial forms of the hormone as treatments. Really this is just a money-making scheme: sell a test that predicts nothing and sell a drug that corrects the test. Genius. No wonder the American Society of Endocrinologists receives $1million a year for "educational" purposes. Anyway this is another story.

    Remember - ignore your blood tests!

    I hope I have convinced some of you to explore this possibility further.


    Best wishes,

    Mark

    EDIT: Dr peatfield says in his book that approximately 30% of his hypothyroid patients have a history of Mono. Mono itself can induce hypothyroidism, as it attacks the colloid tissure of the thyroid.
     
    Hutan and Aidan Walsh like this.
  2. maddietod

    maddietod Senior Member

    Messages:
    2,687
    Likes:
    2,438
    East Coast, USA
    But if this is true, what's the point of knowing? You're taking 4x the normal dose and getting no response. Have the doctors figured out how to get the medication where it needs to go?

    Madie
    CFS/ME, normal basal temperature, Armour Thyroid never did anything to/for me.
     
    Hutan likes this.
  3. aprilk1869

    aprilk1869 Senior Member

    Messages:
    294
    Likes:
    72
    Scotland, UK
    I've read that potassium sensitizes the mitochondria to thryoid hormones. Have you tried that? I know that when people are on Freddd's protocol and end up depleting their potassium he suggests taking 5 tablets with lots of water. Within half an hour you should be able to see any improvements.
     
  4. ukxmrv

    ukxmrv Senior Member

    Messages:
    4,337
    Likes:
    4,408
    London
    Mark, I can't see how a thyroid problem would cause epidemics of ME or the severe and acute viral illness that was the onset for me? I can't see this in the thyroid groups I've looked at - they were main TATT in the hypothyroid ones.

    So if you are on 4X the dose and you feel no effects then how would you prove it's not getting into cells and is a cause of your symptoms.

    (p.s. just as background my first ME doc in the 80's was treating patients with thyroid meds in the 80's based on low basal temperatures)
     
  5. cigana

    cigana Senior Member

    Messages:
    970
    Likes:
    783
    UK
    Hi Madie,

    The thing is I am only on week 6. It can take much much longer, and I need to increase the dose further and deal with my low iron and possibly low cortisol too, which prevents thyroid hormone from reaching the cells.

    Cheers,

    Mark
     
  6. cigana

    cigana Senior Member

    Messages:
    970
    Likes:
    783
    UK
    Hi April. Thanks for the info - I have tried that actually. The most likely reason at the moment is simply because I'm not on the right dose. After that I'll look into other problems.

    Cheers,

    Mark
     
  7. cigana

    cigana Senior Member

    Messages:
    970
    Likes:
    783
    UK
    Hi uk,

    I don't quite understand what you're asking, but I think it is how do you explain the epidemics? I can't - I would say that they are something different. I should probably have called this thread "mostly Thyroid Resistance"...As for viral onset, it is always possible that the infection could disrupt the ability of thyroid hormone to enter cells or disrupt the conversion and transport processes. The thing is, since no one is looking, we may never know.

    If it were getting into my cells I would have hyperthyroid symptoms. In fact if that amount were getting into my cells I would be dead.

    Cheers,

    Mark
     
  8. alex3619

    alex3619 Senior Member

    Messages:
    12,523
    Likes:
    35,227
    Logan, Queensland, Australia
    Hi, the thyroid idea is not new. Some have responded, some do not. I don't have figures. One patient I know of who responded is still unwell, just improved.

    ME is associated with low molecular weight RNase L. I recall that the cleavage process was though to generate fragments that might be interacting with thyroid receptors, but this is really old research and I don't recall the details. Cytokines might also have an impact.

    My best guess is that some patients have an atypical thyroid resistance problem, but that most don't. Of those that don't, some will have a thyroid component for various reasons. There are also claims that some ME patients who tried it had very severe adverse consequences. Again, I don't have figures - nobody has done a good large scale study. The thing about thyroid hormones is they have the potential to push energy production beyond what we can handle - that is why Cheney does not like this treatment, iirc.

    Bye
    Alex
     
    Hutan likes this.
  9. Tony Mach

    Tony Mach Show me the evidence.

    Messages:
    146
    Likes:
    35
    Upper Palatinate, Bavaria
    Well, the question is: Is it a different disease than ME/CFS? Or is it the same disease with slightly different symptoms and a different name? This reminds me of "treatment-resistant Lyme". I don't know enough about Lyme, but if you don't get substantial improvement from a treatment, I would say you are not treating the cause.

    And the comparison to insulin resistance in type 2 diabetes mellus (T2DM) is good insofar, as giving insulin in T2DM might overpower the insulin resistance, but does not remove the cause. As far as I see, in T2DM the cells are full with glucose ("carbs") and the cause is a malfunction in the cells metabolism (which is, in my humble opinion, caused by ceral grains plus too much carbs and too much omega-6 fatty acids). In T2DM, the body tries to overpower this: the beta-cells excrete more insulin, to lower the blood glucose level and get the glucose from the blood into the cells. Furthermore, after some time the pancreas starts to fail, at which point the insulin level starts to fall, but the glucose level rises. So there is something you can measure in T2DM.

    I am fully prepared to accept that there is something wrong in the metabolism of the cells in ME/CFS (without knowing the cause). And I suspect that this problem in cell metabolism would leave traces in the blood. And I would not be surprised if that trace in the blood can not be measured today (because e.g. it is a currently unknown hormone, or whatever). But saying 'it is thyroid resistance' while at the same time saying 'but you can't measure it' is a bit like saying 'there is a 10 pound diamond in my backyard' while saying 'but if you dig for it, you won't find it'.

    Giving thyroid hormone in people with ME/CFS (but 'normalish' thyroid levels) won't address the cause, as little as giving insulin in people with T2DM. It might help a bit, it might make you feel a bit better (at least in the short term), but I would suspect the cells would in both cases would further downregulate the receptors.

    I know it is tempting to get label that is indicative of the cause, unlike this "chronic fatigue syndrome". Or to use a available solution from another medical problem. But until we get biomarkers, get targeted treatment and know the cause(s) this is swordplay at night, in the fog.
     
  10. ukxmrv

    ukxmrv Senior Member

    Messages:
    4,337
    Likes:
    4,408
    London
    What are you taking Mark and at what dose?

    Could you maybe have antibodies against thyroid hormones

    (just thinking off the top of my head)
     
  11. cigana

    cigana Senior Member

    Messages:
    970
    Likes:
    783
    UK
    Hi Alex,

    I suppose what I am saying is how many people with the label "CFS/Fibro" actually have undiagnosed hypothyroidism. Of course, some will have other diseases, but I want everyone to realise that they may have a thyroid problem despite normal blood tests.

    Regarding people who improve on thyroid hormones but don't are still unwell, to my mind that is an indication that they need to tweak their thyroid treatment, rather than that they should assume they have some other problem, at least to first order. Reading the Yahoo thyroid and adrenal group pages lately I see how getting thyroid treatment right can take many years and it is not a simple as taking the hormone.

    Cheers,

    Mark
     
  12. cigana

    cigana Senior Member

    Messages:
    970
    Likes:
    783
    UK

    Hi uk,

    I'm taking 62.5mcg of pure T3. I've tested negative for both types of antibodies. It is interesting how on the thyroid groups they are used to people like me that have all the symptoms and do not improve on relatively large doses of T3. The universal reply is that (a) I am not taking enough yet and (b) there are other issues that need to be addressed first (e.g. iron, cortisol, zinc), otherwise no amount of T3 will ever get into the cells. So for the time being I am following their recommended protocols.

    Cheers,

    Mark
     
  13. cigana

    cigana Senior Member

    Messages:
    970
    Likes:
    783
    UK
    Hi Tony,

    You can measure it, just indirectly. Temperature and pulse rise when the cells take up with thyroid hormone, i.e. you become hyperthryoid. You can't measure what's going on in the cells via the blood, though.

    It's a simple test - slowly increase the dose of thyroid hormone until temperature and symptoms reside. If you do not become quickly hyperthyroid there is a sure sign the hormone is not doing its job.

    You are right it won't address the cause, unless the cause is Reverse T3, but then it won't address the original cause of reverse T3.

    However from reading the thyroid yahoo groups lately this does not seem to be like insulin resistance where the receptors continue to downregulate. It seems most people find a dose and can stay on that dose without relapse...

    Cheers,

    Mark
     
  14. mellster

    mellster Marco

    Messages:
    804
    Likes:
    189
    San Francisco
    This is indeed an interesting thread. I remember the thyroid hormone therapy getting a lot of flack, esp. the t4, but I have tried the T3 (up to 37.5 mcg) and it helped me with my fatigue although I was surprised how little effect increasing the dosage had, my basal temp which is usually a bit low rose slightly as well and I was prepared for all kinds of side effects but nada, so I felt a bit thyroid 'resistent'. I think for those who can handle it titrating the dose this might be a good treatment approach.
     
  15. cigana

    cigana Senior Member

    Messages:
    970
    Likes:
    783
    UK
    Hi mellster,

    Then I strongly suggest you join the Yahoo Thyroid Patient Advocacy group and follow their direction. Your dose is fairly small.

    Cheers,

    Mark
     
  16. taniaaust1

    taniaaust1 Senior Member

    Messages:
    11,916
    Likes:
    12,775
    Sth Australia
    or maybe it just isnt helping as it isnt your underlaying issue. Thyriod troubles I think can be secondary issues hence treating the thyriod issue even if you got one may not lead to a cure.

    The thyriod deficiency thing in ME/CFS has been looked at by many doctors.. and there is a well known ME/CFS doctor who does always give thyriod meds as "part' of the overall treatment. You may not have heard of him thou as he like all ME/CFS specialists... dont have many cures.

    Its not much different to treating POTS in ME/CFS.. you may have POTS and you may be helped some by treating it.. but you still will have ME/CFS even with treating the POTS. Pity ME/CFS isnt just a case of treating the thyriod but it isnt.

    Also you could consider seeing ME/CFS isnt a stable illness.. the becoming better after many years, for many of them probably is cause the condition has improved some anyway in many. Many of us do improve some without that treatment (without anything).

    best luck in whatever you try.
     
  17. justy

    justy Donate Advocate Demonstrate

    Messages:
    5,312
    Likes:
    12,095
    U.K
    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
     
  18. cigana

    cigana Senior Member

    Messages:
    970
    Likes:
    783
    UK
    Hi Justy,

    Nice to hear from you! Well I've been really busy lately reading through what the thyroid people have to say, and I can tell you it is very interesting.

    It is strange how you have wondered why some of these people don't think they have ME? I think the reason is simply that for these "lucky" people something showed up on their original thyroid blood tests - so they were immediately labelled hypothyroid and remained so ever since. They "know" the cause of their symptoms. Whereas for others with exactly the same symptoms who test normal on thryoid blood tests they are given an alternative label "CFS", depsite the fact that they may just have Thyroid Resistance.

    That you have low body temp and have already started to get more energy is a very positive sign. So if things don't work out on the T4 I would definitely consider natural or T3. Not being able to lose weight despite being on a very restricted diet is a classic hypothyroid symptom too, the thyroid groups are full of these people!

    The low ferritin is very significant - hypothyroidism induces two main deficiencies - iron and vitamin B12. Again there are many people on the thyroid groups with low ferritin. Note that you need good ferritin levels in order for the T3 to get into your cells, so it is important you treat that. I know that the advice you would get from the thyroid groups would be to treat that first...

    Best of luck...

    Mark

    p.s. yeah not sure the methylation helped at all
     
    Michael likes this.
  19. justy

    justy Donate Advocate Demonstrate

    Messages:
    5,312
    Likes:
    12,095
    U.K
    Nice to hear back from you Mark. Ive been taking Iron supplements for about a year now and my ferritin is very slowly improving. Sorry the methylation didnt work out. I have had a lot of adrenal fatigue as well so im taking it slow as i know treating the low thyroid can exacerbate this initially, let us know how it goes!
    Justy.
     
  20. rwac

    rwac Senior Member

    Messages:
    167
    Likes:
    60
    I'm on 132 mcg of T3, and I'm doing pretty good. At one point, I went as high as 150mcg.
    Hmm, I had mono at one point too ...
     

See more popular forum discussions.

Share This Page