Hydrocortisone & Thyroid Hormone Use in ME/CFS + Misdiagnosing Rarer Hypothyroidisms as ME/CFS

[Valentijn]

Thyroid issues and ME/CFS should be relatively difficult for a doctor to get mixed up, especially since the ME/CFS diagnosis should exclude primary thyroid issues. But in addition to that there's the matter of Post-Exertional Malaise - getting very sick 24 hours after exertion. Do thyroid patients get swollen lymph nodes after exertion? Do they usually get orthostatic intolerance? Do thyroid patients perform worse on the 2nd day of a 2-day CPET?

ME/CFS exists, and it is distinct from thyroid disorders. What doesn't exist in any meaningful manner is the Oxford-defined CFS. That is not ME/CFS - it's everything anyone wants it to be, and as such is nothing in particular. But the use of that ridiculous criteria in the UK does not mean that ME/CFS does not exist. CCC and ICC defined ME/CFS describe a distinct disease which rather accurately and specifically describes our symptoms.

I'd be amazed if someone read the real criteria and came away still believing either that ME/CFS = thyroid dysfunction, or that ME/CFS doesn't exist as a distinct entity. Hence I can only assume that people on the thyroid forum making their claims are 1) badly misled by bad ME/CFS definitions, 2) completely ignorant of the proper ME/CFS definitions, and 3) not interested in becoming less ignorant about a disease before making sweeping and dismissive claims about it.

 

[poppythecat]

Thyroid issues and ME/CFS should be relatively difficult for a doctor to get mixed up, especially since the ME/CFS diagnosis should exclude primary thyroid issues. But in addition to that there's the matter of Post-Exertional Malaise - getting very sick 24 hours after exertion. Do thyroid patients get swollen lymph nodes after exertion? Do they usually get orthostatic intolerance? Do thyroid patients perform worse on the 2nd day of a 2-day CPET?

ME/CFS exists, and it is distinct from thyroid disorders. What doesn't exist in any meaningful manner is the Oxford-defined CFS. That is not ME/CFS - it's everything anyone wants it to be, and as such is nothing in particular. But the use of that ridiculous criteria in the UK does not mean that ME/CFS does not exist. CCC and ICC defined ME/CFS describe a distinct disease which rather accurately and specifically describes our symptoms.

I'd be amazed if someone read the real criteria and came away still believing either that ME/CFS = thyroid dysfunction, or that ME/CFS doesn't exist as a distinct entity. Hence I can only assume that people on the thyroid forum making their claims are 1) badly misled by bad ME/CFS definitions, 2) completely ignorant of the proper ME/CFS definitions, and 3) not interested in becoming less ignorant about a disease before making sweeping and dismissive claims about it.

Valentijn. For me, the post exertional malaise and orothostatic intolerance turned out to be hypoadrenalism. A cardiologist looked me straight in the eye last year and said, when I told him my blood pressure dropped when I stood up, "that's typical of an adrenal crisis". Take a look at this adrenal questionnaire
http://www.adrenalfatigue.org/take-the-adrenal-fatigue-quiz

I just had to nip back and edit this Valentijn. I followed a link to a video on youtube. Then followed another link and found this. Although it says its about thyroid, it isn't. It's about hypoadrenalism.

 

[Sidereal]

You see these kinds of M.E. bashing discussions all over internet forums dedicated to various diseases where people hang out who have been misdiagnosed with the wastebasket chronic fatigue syndrome diagnosis by lazy or incompetent doctors until signs & symptoms of their specific disease became blindingly obvious or life-threatening. I can understand the anger of these disgruntled patients who have been told that they have this stigmatising illness for which there is no treatment when in actuality their problems could have been alleviated or eliminated with hormone replacement or other appropriate therapies. That's awful and I am sorry for your ordeal but that does not mean that M.E. does not exist. Going around claiming that all M.E. patients have undiagnosed endocrine disease is stupid.

The root cause of this problem are not ignorant patients but rather fatigue-based case definitions of CFS which naturally lead to all kinds of illnesses being diagnosed as CFS in the early stages when symptoms may be vague and non-specific and include fatigue as a prominent complaint. This state of confusion also creates a perfect market niche for any two-bit halfwitted doctor to claim to be an expert in treating exhausted people and feed them hormones and supplement pills based on bogus alternative medicine nonsense theories from the 1950s about the functioning of the HPA axis.

 

[Hip]

Yes, it is would woolly thinking to conclude that just because some people with undetected thyroid issues are misdiagnosed with ME/CFS, that this somehow means that ME/CFS does not exist at all. Sometimes cancer is misdiagnosed; that does not mean cancer does not exist.



However, there is actually a very important and new piece of information coming from the folks at the tpauk.com Thyroid Patient Advocacy Forum, which may impact the ME/CFS community. (@Countrygirl outlines this in her above post).

This is the fact that tpauk.com say they get hundreds of hypothyroid patients arriving at their forum that are treated with T4, but still have symptoms, and so were then (mis)diagnosed with ME/CFS, as well as their diagnosis of hypothyroidism. But when these patients started T4 + T3 therapy, they were restored to health. So these hypothyroid patients would seem to have a low T3 condition that can masquerade as ME/CFS.

This would appear to be a new category of potential ME/CFS misdiagnosis. And one that nobody in the medical profession seems to have considered before.

Normally a good doctor will check you for hypothyroidism, and rule this out before he arrives at an ME/CFS diagnosis. So if the doctor dutifully performs this thyroid check, you would not normally expect hypothyroidism to ever be confused with and misdiagnosed as ME/CFS.

But in the case of patients already diagnosed with hypothyroidism, and given the standard T4 hormone replacement treatment, any continued symptoms of fatigue, brain fog, etc they report will not now be seen as resulting from hypothyroidism, because the doctor assumes the T4 medication will fix all the hypothyroid symptoms. So if the patient is still complaining of lingering fatigue, brain fog, etc, the doctor then may make an additional diagnosis of ME/CFS.

So now the patient thinks they have both hypothyroidism and ME/CFS; but the lingering fatigue and brain fog the patient experiences may not in fact be fatigue, but may be due a low T3 condition. This is according to the experience of the folks at tpauk.com. Standard thyroid tests don't measure T3, so the doctor will have no inkling of this low T3 condition.

This low T3 condition may be due to problems converting T4 to T3, or issues with high reverse T3, which blocks the action of T3.


If I understand what they are saying at tpauk.com correctly, this potential to misdiagnose a low T3 condition as ME/CFS would only occur in hypothyroid patients.

Thus for any ME/CFS patient who also has hypothyroidism: the implication is that it's possible you don't in fact have ME/CFS, but instead have a low T3 condition alongside you hypothyroidism, which can be simply treated with T3 medication.

As to what percentage of hypothyroid patients are misdiagnosed with ME/CFS when they really have a low T3 condition, that we don't know.

 

[Gingergrrl]

@Hip What you are describing is a big problem in endocrinology that my Endo explained to me at my very first appt. Some docs don't test and monitor a patient's T3 levels. Luckily mine does and I was put on Armour Thyroid from day one. It seems in the UK (but in the US, too) that many patients are just tested for TSH (and the range of "normal" is much higher in the UK) so they are not receiving the right treatment or just receiving a T4 med like Synthroid which doesn't end up helping them.

It is a huge problem but as you said, it is a totally different issue than ME/CFS. People are misdiagnosed with all kinds of illnesses including cancer but as you said, this doesn't mean that cancer does not exist. ME/CFS is no different.

 

[Hip]

I enjoyed that video, @poppythecat.

Interesting thing is said at timecode 3:00 of the video:

"Cortisol is no longer patented, and has become very cheap. As a result, pharmaceutical companies have no incentive to spend the money to have cortisol approved as a low dose therapy. Nowadays, unless pharmaceutical companies are pushing the treatment, the disease falls through the cracks."

 

[Little Bluestem]

However, there is actually a very important and new piece of information coming from the folks at the tpauk.com Thyroid Patient Advocacy Forum, which may impact the ME/CFS community. (@Countrygirl outlines this in her above post).

This is the fact that tpauk.com say they get hundreds of hypothyroid patients arriving at their forum that are treated with T4, but still have symptoms, and so were then (mis)diagnosed with ME/CFS, as well as their diagnosis of hypothyroidism. But when these patients started T4 + T3 therapy, they were restored to health. So these hypothyroid patients would seem to have a low T3 condition that can masquerade as ME/CFS.

This would appear to be a new category of potential ME/CFS misdiagnosis. And one that nobody in the medical profession seems to have considered before.

We have discussed low T3 here in the past.

At least if you have ME, you do not have to have classic hypothyroidism to have T3 problems. When I was first diagnosed with T3 disorder, my TSH, T4, and T3 were all in the normal ranges. However, my T4 was high normal while my T3 was low normal. This suggests that too much of the T4 is being converted to Reverse T3. Subsequent testing showed that I did have high RT3.

I feel a little better on supplemental T3, but it certainly hasn't cured my ME.

My doctor says that she is not comfortable with everything on the Stop the Thyroid Madness site, but she did say the the RT3 page was good although it does not explain it all. You might also want to check out:
http://www.thyroid-rt3.com
http://www.drrind.com/

 

[poppythecat]

I enjoyed that video, @poppythecat.

Interesting thing is said at timecode 3:00 of the video:

I have this idea that a lot of people diagnosed with ME/CFS probably have adrenal or pituitary problems. There's a doctor in Hartlepool, Dr Chandy who was diagnosing and treating hypoadrenalism. He has recently been stopped by the GMC. Here he is on youtube. At 6.13 he says "we GPs are not allowed to diagnose and treat". I wonder how many people on here have done the saliva cortisol test? I think you can order it in most countries?

 

[barbc56]

@poppythecat

I would hope that a doctor treats patients using science based theories.

Barb

 

[MeSci]

@poppythecat

I would hope that a doctor treats patients using science based theories.

Barb

I wish...

 

[justy]

Just my two cents worth on thyroid v M.E. I spent some time at the thyroid fourm and found lots of people claiming M.E is just fabricated and not a real illness, I believed this might be the case for me as my symptoms are very common in hypothyroidism.

I looked around for Dr recommendations and went to a private Dr in the UK who believed that all M.E was misdiagnosed thyroid disorder and unsurprisingly diagnosed me with hypothyroidism. I was given Armour thyroid after a trial of levo had not worked out with a previous private M.E doctor.

At first I felt a bit better - especially improved libido and mood and some more energy. I was told to up the dose, so I did and after just a few days developed severe dizziness, then severe fatigue, then all the old M.E symptoms became amplified. I stopped the Armour, although this doctor believed I needed to continue or indeed increase my dose further. It took approx. three months for the extreme dizziness to abate and my health slid backwards considerably and has never recovered to the level I was at before I saw the Dr.

I then did a saliva cortisol test which showed low DHEA and Cortisol that swung up and down over 24 hours, but not in the way it should (normal am, dropped into my boots midday, normal afternoon, dropped off the scale again pm).

Another M.E doctor looked at the saliva result and said I shouldn't take thyroid hormones as my adrenals are fatigued and they caused me to crash. I was told to take DHEA - this made me very agitated, weepy, irritable and depressed at only 2 mg a day, so despite being severely deficient I cannot take it. I was also told to take HC cream to boost adrenals, but I already take steroids for lung issues and have problems with them (throws hormones out of whack, excessive sweating, more infections, bruising all over legs, they caused a severe crash in my M.E in 2009)

Treating M.E with hormones is a blunt instrument and doesn't suit us all. There where many zealots on these other forums claiming to be cured, and they must have had thyroid issues, I am so glad they are better, but it doesn't work for everyone - I met many through PM's who had NOT been helped by this approach and suffered a worsening of health as I did)

Now I have been tested for bacterial infections anf have at least two chronic intracellular infections and I find that steroids are contraindicated for this condition - no wonder I get so much worse everytime I need the steroids for lung infections etc.

I met many patients over the moon with this particular Dr, and he was lovely, as was the M.E doctor, but being lovely doesn't mean you have all the answers and to deny the existence of M.E is not only worng but dangerous for those of us who have tried and failed the endocrine route.

 

[poppythecat]

@poppythecat

I would hope that a doctor treats patients using science based theories.

Barb

Sorry Barb. Maybe I'm being dense. Are you saying the saliva cortisol test isn't scientific? It's give a result with numbers and ranges.

 

[somatoform]

@poppythecat

I would hope that a doctor treats patients using science based theories.

Barb

Who funds the research into science based theories Barb? "Science" is now heavily influenced.

 

[Valentijn]

Valentijn. For me, the post exertional malaise and orothostatic intolerance turned out to be hypoadrenalism.

Could you describe the PEM you experienced? Because I have never heard of it being a part of thyroid dysfunction without ME also being present - not from patient accounts, news articles, or published research. I'd also appreciate it if you could point to any of those sources affirming the presence of PEM in thyroid disorders.

 

[bertiedog]

Yes, it is would woolly thinking to conclude that just because some people with undetected thyroid issues are misdiagnosed with ME/CFS, that this somehow means that ME/CFS does not exist at all. Sometimes cancer is misdiagnosed; that does not mean cancer does not exist.



However, there is actually a very important and new piece of information coming from the folks at the tpauk.com Thyroid Patient Advocacy Forum, which may impact the ME/CFS community. (@Countrygirl outlines this in her above post).

This is the fact that tpauk.com say they get hundreds of hypothyroid patients arriving at their forum that are treated with T4, but still have symptoms, and so were then (mis)diagnosed with ME/CFS, as well as their diagnosis of hypothyroidism. But when these patients started T4 + T3 therapy, they were restored to health. So these hypothyroid patients would seem to have a low T3 condition that can masquerade as ME/CFS.

This would appear to be a new category of potential ME/CFS misdiagnosis. And one that nobody in the medical profession seems to have considered before.

Normally a good doctor will check you for hypothyroidism, and rule this out before he arrives at an ME/CFS diagnosis. So if the doctor dutifully performs this thyroid check, you would not normally expect hypothyroidism to ever be confused with and misdiagnosed as ME/CFS.

But in the case of patients already diagnosed with hypothyroidism, and given the standard T4 hormone replacement treatment, any continued symptoms of fatigue, brain fog, etc they report will not now be seen as resulting from hypothyroidism, because the doctor assumes the T4 medication will fix all the hypothyroid symptoms. So if the patient is still complaining of lingering fatigue, brain fog, etc, the doctor then may make an additional diagnosis of ME/CFS.

So now the patient thinks they have both hypothyroidism and ME/CFS; but the lingering fatigue and brain fog the patient experiences may not in fact be fatigue, but may be due a low T3 condition. This is according to the experience of the folks at tpauk.com. Standard thyroid tests don't measure T3, so the doctor will have no inkling of this low T3 condition.

This low T3 condition may be due to problems converting T4 to T3, or issues with high reverse T3, which blocks the action of T3.


If I understand what they are saying at tpauk.com correctly, this potential to misdiagnose a low T3 condition as ME/CFS would only occur in hypothyroid patients.

Thus for any ME/CFS patient who also has hypothyroidism: the implication is that it's possible you don't in fact have ME/CFS, but instead have a low T3 condition alongside you hypothyroidism, which can be simply treated with T3 medication.

As to what percentage of hypothyroid patients are misdiagnosed with ME/CFS when they really have a low T3 condition, that we don't know.

I think I come across this fairly frequently in the Fibromyalgia group I run here in the UK. So many of the members look very hypothyroid to me with huge weight issues as well as the symptoms of severe pain and fatigue plus sleep issues. Some of them might be on T4 only meds, many have been told their thyroid is fine which I just don't believe when I talk to them and if I should run a Genova Diagnostic full thyroid panel it rarely comes back normal.

What I have found to be helpful for at least some of them is the addition of Nutri Thyroid glandulars, most need about 3 daily in split doses. This seems to work quite well for those of them who are on thyroxine but I don't know how effective it would be for those who aren't on any thyroid meds because none of them have tried it yet. The big problem is that most of them are too disabled to work and struggle to live on benefits so no way can they afford the glandulars to try. One elderly gentleman has got his old energy back on 3 daily and looks so much better I even wondered whether the glandulars are working like a medication rather than a supplement.

I find it so distressing to see this problem regularly when new members join. I am also aware there is a group of members who also have bad adrenal issues which aren't addressed either. It often feels like quite a hopeless situation. On the other hand the NHS doctors they see are perfectly happy to put them on high doses of a variety of toxic drugs which make many of the members feel like zombies. But that is considered to be no problem by these so called expert doctors.

What a dreadful situation this is largely caused by negligence and ignorance of endocrine issues.

Pam

 

[poppythecat]

Could you describe the PEM you experienced? Because I have never heard of it being a part of thyroid dysfunction without ME also being present - not from patient accounts, news articles, or published research. I'd also appreciate it if you could point to any of those sources affirming the presence of PEM in thyroid disorders.

Hi Valentijn. For me thyroid wasn't the answer, it was the clue. I looked at my old notes recently. When I first got ill my thyroid function was almost hyper, not the hypo I now am. I know now I've been hypoadrenal since at least the age of 10, which was when I first starting weird reactions to chemicals.

It was my mother who first noticed post exersional malaise (we had no idea that's what it was called) and noticed I was always ill a day (or sometimes 2 days) after I did something. The best way I can describe it for you is this. I used to sing in a choir. That was when I used to realise how different I was from other people. I could manage the afternoon rehearsal on concert day and do the concert. Usually I went out for a drink with friends.

The next day I would be in bed, with an uncontrollable burning feeling in my chest, pain down my arms, legs feeling like two large lumps of lead, barely able to keep my eyes open. No-one knew because I wasn't allowed to tell my symptoms to a doctor and I knew not to arrange anything the day after a concert. I would even take the day off on the Monday usually, so that I had two days to recover.

I haven't sung for several years now. But I guess most recently it happens if I've walked too far, for example. Often it starts with suddenly finding I'm shaking all over and I have to run to the loo. It can happen a few hours later or the next day. Then I get a pain in my ribs, my legs turn to lead or jelly and I have to sit or lie down.

I see a lot of people on this thread (which we've hijacked, cos it's about Mary Kidson really) have seized on thyroid. It isn't that, for me. It's adrenal. Thyroid came later, probably around menopause I think. It's possible it all comes from the pituitary. I'm in touch by email with a wee group of pituitary sufferers. All dismissed initially as having ME. Even a minor head injury can cause pituitary damage. The pituitary, along with the hypothalamus, kind of runs the show, so you can have a complex mixture of adrenal/sex-hormone/thyroid issues and a whole host of other things. They can go together, which measn treating can be complicated.

It's taken me 2 years to get to where I am now, and one thing I've learned is that what works for one doesn't work for another. For example, a lot of people swear by magnesium. I'd guess there are people on here who use it and find it beneficial. I can't take it - it sends me spiralling downwards so fast it's scary, with all the old low cortisol symptoms. I tried to twice to be certain there wasn't something else going on.

If you embark on the adrenal/pituitary/endocrine journey you have to remember that it's just that. it's complicated, it's up and down and you have to be prepared to change, try and analyse for yourself what works and what doesn't. I've lost touch with her now, but a fellow member of an old ME group started doing this stuff at teh same time as me. She was hyper-sensitive to all supplements and started with literally one quarter of one tablet of nutri adrenal and nutri thyroid. That was all she could tolerate. It took her months and months to build up slowly til she was no longer bed bound.

Just realised I didn't include the adrenal links. Here's the adrenal quiz I show people http://www.adrenalfatigue.org/take-the-adrenal-fatigue-quiz and here's a list of adrenal symptoms http://www.drlam.com/blog/75-signs-symptoms-and-alerts-of-adrenal-fatigue-syndrome-2/1970/

 

[poppythecat]

Now I have been tested for bacterial infections anf have at least two chronic intracellular infections and I find that steroids are contraindicated for this condition - no wonder I get so much worse everytime I need the steroids for lung infections etc.
.

ME like illness has many causes. Sounds like for you it might be chronic infection. In my old ME group that I belonged to there was a member who had to have an operation to remove, deeply seated infected tissue. His ME went.

 

[Hip]

@poppythecat

Were there any particular medical or other events that occurred just before your own ME/CFS-like health condition began?

Events might include:
• Flu-like illnesses, gastrointestinal illnesses, bad sore throats
• Toxic exposures, particularly to significant amounts of mold in water-damaged buildings, or to significant amounts of pesticides
• Physical trauma, especially to the head, such as a car accident
• Major surgery

These are the typical triggers of normal ME/CFS.

Then things like IBS, interstitial cystitis, endometriosis, and several others may be exacerbating factors to ME/CFS (because they are common comorbid condition in ME/CFS. Do you have any of these?

What diagnoses have your received from the medical profession, by the way. And how long have you had your illness?

And why do rule out the possibility that you have ME/CFS? I would just like to understand why you think your symptoms could not be due to ME/CFS.

Studies have shown that ME/CFS patients have low cortisol: this study found a cortisol was significantly lower in ME/CFS patients across the whole day, as did this study and this study. So if you have low cortisol, this is in keeping with having ME/CFS.

And you do seem to have PEM. Now PEM seems to be one of those symptoms that is unique to ME/CFS, as far as I am aware. So PEM is a good indicator of ME/CFS.

Your response to magnesium seems atypical for ME/CFS though. ME/CFS patients tend to find magnesium quite helpful.

 

[barbc56]

Sorry Barb. Maybe I'm being dense. Are you saying the saliva cortisol test isn't scientific? It's give a result with numbers and ranges.

This was discussed recently on this thread. I think.

You might want to do a search.

Barb

 

[poppythecat]

@poppythecat

Were there any particular medical or other events that occurred just before your own ME/CFS-like health condition began?

Events might include:
• Flu-like illnesses, gastrointestinal illnesses, bad sore throats
• Toxic exposures, particularly to significant amounts of mold in water-damaged buildings, or to significant amounts of pesticides
• Physical trauma, especially to the head, such as a car accident
• Major surgery

These are the typical triggers of normal ME/CFS.

Then things like IBS, interstitial cystitis, endometriosis, and several others may be exacerbating factors to ME/CFS (because they are common comorbid condition in ME/CFS. Do you have any of these?

What diagnoses have your received from the medical profession, by the way. And how long have you had your illness?

And why do rule out the possibility that you have ME/CFS? I would just like to understand why you think your symptoms could not be due to ME/CFS.

Studies have shown that ME/CFS patients have low cortisol: this study found a cortisol was significantly lower in ME/CFS patients across the whole day, as did this study and this study. So if you have low cortisol, this is in keeping with having ME/CFS.

And you do seem to have PEM. Now PEM seems to be one of those symptoms that is unique to ME/CFS, as far as I am aware. So PEM is a good indicator of ME/CFS.

Your response to magnesium seems atypical for ME/CFS though. ME/CFS patients tend to find magnesium quite helpful.

In retrospect I think I had a few symptoms from a small child. My mother always said she dreaded the winter when I was small cos I was always ill. I remember being made ill by the smell of bleach when I was about 10, and having this weird thing where I'd go to school in the morning and feel ill for about half an hour. I had neck problems at about 12 or 13 (can't remember which) and an odd episode where I "came over funny" when I was out walking when I was about 14.

Then when I was 20 I had flu, that was what started off my long term illness. What the doctors seized on was my racing heart. Also I remember someone making me stand up, lie down repeatedly and measuring my blood pressure. In those days you didn't question doctors and they rarely told you what they were looking for. I know how, cos I was told to measure my blood pressure sitting and standing, that when I crash my bp drops measurably when I stand. I think I said above somewhere that a year ago I saw a cardiologist for a follow up appointment. I told him I'd been diagnosed with adrenal problems. Oddly he didn't even ask what problems, but I told him about my bp dropping when I stood and he looked me straight in the eye and said "that's typical of an adrenal crisis". I don;t have Addisons disease, so I guess I don't get true adrenal crises in the real sense.

I remember when I was first ill that I'd walk up stairs rather than use a life, cos lifts always made me light headed and funny.

I was always told there was nothing wrong with me (your a perfectly healthy young woman, there's nothign whatsover the matter with you). We hadn't heard of ME then and there was no internet, so there was nowhere to look stuff at adn we had no option but to listen to doctors - who were invariably rude, bullying or disinterested.

I started telling people I "had" ME about 15 years ago when I moved to a new are and had to have some way of explaining to people why I was the way I was. Then about 3 years ago I was sent by my GP to see an ME specialist. He was funny really. We had a pleasant chat. He didn't want to know the history of my illness, didn't examine me and didn't order any tests. But he wrote to my GP to say I had ME. I doubt if he ever diagnosed anyone with anything else.

Then a cousin of mine said "of course no-one has ever tried to find otu what's wrong with you, have they". I'd always thought if someone would listen to my symptoms and work with me we could work out what must be causing them. Cos something had to be. As you all know, we don't make all this stuff up cos we're sad people with nothing else to do. But I was never allowed to tell a doctor my symptoms - everything I said was dismissed. A common story, I'm sure. It's the old "that's none specific", "lots of conditions can cause that" etc, syndrome. Sure you've been there too.

I joined some ME support groups about 7 years when I collapsed totally and my doctor wouldn't even come and see me. That was a revelation cos for the first time there were other people out there like me. I'd never met anyone with my symptoms, and suddenly here they were.

But I could't shake the nagging feeling that I still didn't know what was causing the symtpoms. My GP smirked at me and expected me to believe I had this mystery disease that he wasn't interested in treating and which apparently had been diagnosed by magic, not tests. Then I went downhill slowly and steadily over 6 months, 2 yeasr ago. Til I couldn't stand, I was shaking all over, I was very depressed, I was too weak to breathe properly and i lost my voice. Youd think a doctor might help but the one I saw wasn't interested. He did do a blood test and reluctantly told me my thyroid was underactive. I knew he'd just given me the clue I was looking for. I did a lot of research and started to see the adrenal/pituitary connection with all its symptoms.

The doctor put me on thyroxine which simply made me well enough to sit on teh sofa rather then be in bed. Istill felt totally awful. But I ordered teh saliva test through Dr Myhill's website. That showed I was very low. With some help from a therapist and lots of forums and facebook groups I started on adrenal support. If it's any help I now take 17.5mg hydrocortisone, 4 x Nutri Adrenal extra, 1 x AdrenoMax and 3 g Vit C. For thyroid I take 2 X nutri thyroid, 50mcg thyroxine and 3 x ThyroComplex. the thyrocomplex has been like a magic trick for me. But I don't think it works so well for other people. I also take Vit D, which the doctor told me I was low in.

I'm improving slowly and steadily. I kind of liken it to waking up one cell at a time. I don't know how well I can get cos I've been ill for a long time, but I'm damn well gonna try. part of the problem is that it's all so complicated and it seems almost everyone is different. I think I said I'm ona private email list of people with pituitary problems.

All the endo system is linked and I know for a fact taht what works for one doesn't for another. For example, lots of people swear by Natural Dessicated Thyroid, whereas others can't take it. If you want to start down the road, it is a road - a rocky, bumpy one, with twist, turns and dead ends. You can't expect any doctor to do it for you or get it right first time, you have to engage, and analyse. It's hard, but the alternative wasn't one I was prepared to give in to.

Does any of that help?

I just realised I typed an essay and we've hijacked the thread. If you want to know anymore, send me a PM to my inbox. Same for anyone else. It's not fair to continue on this thread about the mother and daughter.