Advice on what to ask doctor and how to ask it!?

LegacyUser · 16-09-2009 3:21pm #1

Hello all,
I have previously been diagnosed with CFS. After more than 5 years it is not improving but worsening. I am not entirely convinced that CFS is an accurate diagnosis, but instead was given this diagnosis in the absense of any other explanation being available. However after reading some stuff on this site and following links I am beginning to think I may have thyroid issues. I have had blood tests before, which always come back clear, but from some of the websites I have read this does not mean its def not thyroid.
I am due to go to the doc on Friday - this doc is my old family one, and is quite sympathetic to my condition, but TBH I have not yet met a doctor who has offered any real 'treatment' for me.

In my gut I have a feeling that there is more to my condition than CFS, and I am getting VERY weary of not having any treatment or positive options.

I was hoping if other posters could advise on how to approach my chat with the doc. I don't want to appear like a hypochondriac who "wants" to be diagnosed with a "serious" illness, but likewise I want him to understand just how fed up I am now.

I have a list of symptoms I suffer from, and many of these are also associated with thyroid issues.

I guess I am asking for advice on how to tell a doc they might not know what they are talking about! lol Can people point me to some definitive research which I could quote, name some tests I could request, etc? I am bringing my hubby with me in the hope that it will show that it is not just in my head, but that others can see the effects on me too.

I am sick of being sick, and whilst I don't want to be diagnosed with an illness in one sense, I feel that I might stand some chance of feeling better and having a better quality of life if they can at least provide a proper diagnosis - if they know whats wrong there is a better chance I can be treated for it. at the moment all I am told is 'to rest when my body tells me'! but the real world doesn't work like that cos I am tired and ache all the time.

You help and advice would be greatly appreciated - I don't want to appear to the doc like a hyprchondriac but I also want to be clear on just how debilitating things have gotten for me.

Thanks in advance!

Dizzyblonde · 17-09-2009 10:25am

Hi I don't have CFS but I do know what it's like to suffer from a long-term condition which is hard to diagnose and that nobody truly understands unless they've experienced it. It's important to bring a list of your symptoms allong, and any questions/points you want to raise.
Be very specific when describing symptoms and how they affect you, and ask outright for a referral to a specialist. Your doctor will most likely be only too happy to refer you, if only for peace of mind. It's not a good idea to self-diagnose by trawling the net.
I understand completely your point about a firm diagnosis because it really does help to know what you're dealing with.
Good luck

LegacyUser · 17-09-2009 11:10am

thanks for the reply.

I absolutely accept what you are saying about having a specific list of symptoms ready, be prepared, etc - problem is I've been through all this about 10 times now with various GP's. I have been referred for bloods and tests for my IBS. But there is no doctor to be referred to for CFS as it is one of those conditions you get labelled with purely because they cannot find an exact cause for your symptoms. There is no prescribed treatment as such - other than anit-d's cos the seem convinced that it is all due to your attidtude towards life! (Even the sympathetic ones secretly believe that you just need to 'lighten up' a bit! that is my experience anyway). I have taken the anti-d's in the vain hope of feeling better and afterwards then I could definitively say that my illness does not stem from depression but that I do feel depressed and down because of my symtoms.

I know there is a lot of similarities between many CFS symptoms and thyroid issues - once and for all I would like to put that suspicion to rest. A blood test will not confirm this definitively as they are not reliable. So my main question really is how do I push my doctor for futher tests and alternative treatments which are not considered necessary by the mainstream medical profession?

Anyone been through this? how did you get your doctor to agree to look for other possibilities of your illness?

Hypo thyroid runs in my family - my mother had it quite bad and it contributed to and exascerbated other health problems she had. My dad also has mild hypo due to old age. Given my symptoms and family history a few docs have said it might be my thyroid but then the TSH levels come back in "normal" range and that theory is dismissed.

I am at the stage now where I don't feel I am capable of working F/T, but my hubby was made redundant and we are only just getting by as it is. I have been told that it is VERY difficult to be accepted for disability benefit for CFS as it is such a vague diagnosis. Its not that I necessarily would "prefer" to have thyroid issues, but it would explain a lot and would also be more recogniseable as an illness and I might (only might) manage to get some treatment which might make me feel even a bit better than I do now.

I'm totally worn out by it now, and this visit to my doc is feeling like a make or break. So I want to get it right and make sure I come across as a normal person and not some hyprochondriac nut who 'wants' to be sick! I don't have €60 a pop to throw away so I can't afford to keep looking and looking for docs who will listen - this year alone I am on doc no3! one of whom wouldn't even accept a CFS diagnosis as that is all 'tosh' - and wanted to give me more anti-d's! For each doc I have had the list, been very firm, tried not to seem too desperate to be sick! and still no joy, so I am wondering is it me? is it how I come across? This is why I'm going back to childhood GP as he knows me for a long time and in the past has been sympathetic to alternative options, so I am hoping he will keep an open mind.

Any pointers on how to approach this?

houndsoflove · 17-09-2009 10:51pm

Hi worn out and fed up. I know all too well how you feel.

I have being going to consultants for the last year trying to get a diagnoses and it was a nightmare. They thought it was all in my head and i was stressed out. Even my own gp said he had to look at the overall picture because my tests came back clear.

I didn't give up and just today i got diagnosed!

I would advise you see neurologist to rule out a neurological disorder.

Did you have an mri etc?

lynnsback · 21-09-2009 3:04am

In my opinion you have a few options. If you have some money you could go abroad for treatment. I am hypothyroid and had to fight for my diagnosis. However, few doctors seem to really undertand thyroid treatment so I am off to a guy in Belgium. Option two is NOT to ask for a thyroid test, but specifically ask for thyroid antibodies, free T4 and free T3. You should have no antibodies and frees should be at least mid range. Thankfully, doctors are beginning to SLOWLY move away from the TSH test as it is very often not a reflection of thyroid status. Plus, it is a pituitary hormone and not a thyroid hormone. At diagnosis my antibodies were high, my free T4 was low and my free T3 was very low.

Our TSH range in this country is quite high also. In other countries the range only goes up to 3. Here it goes up to 5. So, if you lived somewhere else and TSH was 3.5 you would get treatment. In Ireland you might not. Pretty crazy!

LegacyUser · 21-09-2009 3:54pm

all,
thanks for the replies.

Well, off I went armed with my list, and prepared to take the risk that I come across as a hypochondriac loonie! but as it turned out I was pleasantly surprised. The GP I was originally due to see had been called out in an emergency and his locum was there. As I went through the list with him, he nodded along and encouraged me, rather than butting in and looking bored like the others did! Straight away he said he is fairly sure that it is thyroid related. He felt my glands and said my adrenal glands are swollen. Without having to pester him or ask, he straight away I need glucose tests, cortisol tests and free T3 and reverse T3 tests. I was so relieved I could have cried!

He agrees that initially my symptoms appeared to be CFS as they were milder initially, but now, with the other issues and symptoms it is highly likely that it is thyroid. He even said, that even if the bloods come back clear that does not rule out Thyroid.

He is arranging for me to see and endocrine specialist and have my bloods done.

However, the only downside is that this will take months - 1 mth is the soonest I could get an appt for the bloods and 2-3 mths is how long it will take for an appt for the specialist.

Unfortunately I am not in a position to pay privately so I just have to stick it out til then. In the new year I am going to visit my husbands family abroad, so if I have a firm diagnosis by then I am planning on getting a letter from the specialist and when I go abroad I will be visiting a doc there - it will prob be much cheaper, and for meds alone I will save a lot I am sure.

In the meantime, I am exhausted and really really worn out. The pains in my feet and hands and the aches in my arms and legs are really debilitiating. I don't know realistically if I can keep going for 3 mths (or maybe even more! :eek:).

Does anyone have any suggestions or links to natural remedy websites where maybe I could find something natural to give me a bit of help?

Would taking dessicated thyroid do harm if I have not been officially diagnosed yet? Just wondering if it is one of those things that could be taken regardless without causing damage! I'm desperate to feel a bit better!

But I must say, just having a doc to listen and agree and do something has emotionally been a great boost! It was such a relief!

thanks again for all your replies

Dizzyblonde · 21-09-2009 5:28pm

I'm glad your appointment went well. Once you get an appointment for the specialist you could phone and tell them you'll take a cancellation if one comes up - that can shorten the waiting time considerably.
I don't know about natural remedies but I'd imagine that taking anything that would affect your thyroid wouldn't be a good idea before you have the tests because they could cause an inaccurate result.

lynnsback · 05-12-2009 12:02am

wornout_&_fedup wrote: »

all,
thanks for the replies.

Well, off I went armed with my list, and prepared to take the risk that I come across as a hypochondriac loonie! but as it turned out I was pleasantly surprised. The GP I was originally due to see had been called out in an emergency and his locum was there. As I went through the list with him, he nodded along and encouraged me, rather than butting in and looking bored like the others did! Straight away he said he is fairly sure that it is thyroid related. He felt my glands and said my adrenal glands are swollen. Without having to pester him or ask, he straight away I need glucose tests, cortisol tests and free T3 and reverse T3 tests. I was so relieved I could have cried!

He agrees that initially my symptoms appeared to be CFS as they were milder initially, but now, with the other issues and symptoms it is highly likely that it is thyroid. He even said, that even if the bloods come back clear that does not rule out Thyroid.

Could you pm me the name of this doctor? I am trying to research doctors who understand the intricacies of the thyroid. The fact that he is aware bloods are not the whole story AND that he wants to test reverse T3 indicates that he might possibly get it.

I go to a great doc in Belgium as I was so sick of nobody here getting it.

_Whimsical_ · 05-12-2009 12:26am

wornout_&_fedup wrote: »

all,

Does anyone have any suggestions or links to natural remedy websites where maybe I could find something natural to give me a bit of help?

Would taking dessicated thyroid do harm if I have not been officially diagnosed yet? Just wondering if it is one of those things that could be taken regardless without causing damage! I'm desperate to feel a bit better

I know it's hard to hang on but please PLEASE do not take anything that might affect your thyroid results before you have your tests with the endocrinologist. If you do find something that helps your thyroid function the test results you have in a few months will be skewed and you'll have a much harder time finding the correct medical treatment.

Also most endocrinologists tend to be very by the book. If standard test results (TSH T4 etc) come back anywhere between borderline and normal they are usually dismissive and won't dig deeper into whats causing your illness. Taking anything that might improve things at this stage would be not work in your favour in the long run.

I know it's very hard but please hold off on it.

cyning · 05-12-2009 10:40pm

I'm hypothyroid and yes it is very debilitating, but don't take anything without having it vetted by doctor. It is NOT worth it. You could end up making yourself worse.

I'm surprised at having to wait a month to get bloods done: maybe ask your GP could he get them done sooner? I have normal T4's and crazy TSH. Also it is heriditery so the should be taking that more seriously. Also maybe ask about ferritin levels because that can interfere with thyroid function. If you find your GP isn't helpful, get a second opinion. I'm a big believer in asking, asking and asking some more... if seen my first improvement in 18 months after being a little bit annoying inquisitive in EVERY doc appointment.

kangaroo · 11-12-2009 3:38pm

wornout_&_fedup wrote: »

I am at the stage now where I don't feel I am capable of working F/T, but my hubby was made redundant and we are only just getting by as it is. I have been told that it is VERY difficult to be accepted for disability benefit for CFS as it is such a vague diagnosis. Its not that I necessarily would "prefer" to have thyroid issues, but it would explain a lot and would also be more recogniseable as an illness and I might (only might) manage to get some treatment which might make me feel even a bit better than I do now.

It's certainly not "easy" to get disability benefit for CFS - but lots of people do get it - it has improved on the situation of, say, 15 years ago. Getting insurance payments for CFS in Ireland are a bit harder than the state payments. Also invalidity benefit would be harder to get than disability benefit.

I'm not sure what the situation is with regard to thyroid problems - my guess is that it wouldn't necessarily be easy.

Some doctors believe that there is a higher incidence of thyroid problems in ME/CFS.

I had unusual thyroid results at one stage (high T4 and high TSH - normally one is high and one is low) but when the GP followed my suggetions to request a T3 test, it was turned down by the lab - they just did a FT4 and TSH test.

I think the T4 test was possibly because some of the T4 was bound as my FT4 levels were more normal.

I found a lab in the UK who could do a lot of fancy tests e.g. reverse thyroid, FT3, thyroid antibodies, etc and paid for that. It was relatively cheap as tests go so I got tested a few times when on treatment to see what my levels were.

I persuaded a consultant (now retired) to let me try T3 and T4. I was hopeful it might help particularly as my TSH is slightly high (around 5) and I have a low body temperature and low basal temperature. After around 18 months of trying different dosages, I decided to stop as it wasn't making much difference.

lynnsback · 11-12-2009 4:24pm

kangaroo wrote: »

I persuaded a consultant (now retired) to let me try T3 and T4. I was hopeful it might help particularly as my TSH is slightly high (around 5) and I have a low body temperature and low basal temperature. After around 18 months of trying different dosages, I decided to stop as it wasn't making much difference.

Slightly high TSH of 5? Wow, that is high, not just slightly high. In the US and other countries the TSH range only goes up to 3.0. Such a pity we are so far behind here.

I wonder did you raise high enough? What dosage did you get to? What was your reverse T3? Did you ever get adrenal tests or treatment?

Who drew your blood for the private lab tests?

Funnily enough, the older consultants tend to be the best for the thyroid. They remember when patients were treated by symptoms and actually got well. Nowadays, its all about numbers, no matter how craapy the thyroid patient feels.

kangaroo · 11-12-2009 7:04pm

lynnsback wrote: »

Slightly high TSH of 5? Wow, that is high, not just slightly high. In the US and other countries the TSH range only goes up to 3.0. Such a pity we are so far behind here. .

Yes, I know that the endocrinologists group in the US set it at 3.04. I got quite well read at the time e.g. Mary Shomon stuff, both UK thyroid groups (the British Thyroid Foundation was quite conservative), lots of other books, etc.

It could well be useful for some people with a TSH above that level. But I subsequently read that some doctors don't treat till it gets to 10 which was outside at whatever level. The TSH will often go very high in hypothyroidism.

lynnsback wrote: »

[I wonder did you raise high enough? What dosage did you get to?

I was at 15mcg or so of T3 and around 75mg of T4 for a lot of the time (6+ months). I was temporarily a bit higher but found my heart wasn't really able to cope. I didn't have access to have it compounded but I used to chop up the little 20mcg T3 tablets. They did not chop up evenly so I'd put each one in a sandwich bag with the quantity and balanced it out by taking it three times across the day because of the short half-life of T3.

lynnsback wrote: »

What was your reverse T3?

Normal, which I was surprised about.

lynnsback wrote: »

Did you ever get adrenal tests or treatment?

Yes. I had a cortisol blood test, 24-hour cortisol and did a few of the adrenal stress index tests for cortisol and DHEA (saliva test, taken four times a day).

I took hydrocortisone before taking the thyroid and for some of the time (many months) when I was on it.

lynnsback wrote: »

Who drew your blood for the private lab tests?

A phlebotomist family friend. Who have you or others used?

lynnsback wrote: »

Funnily enough, the older consultants tend to be the best for the thyroid. They remember when patients were treated by symptoms and actually got well. Nowadays, its all about numbers, no matter how craapy the thyroid patient feels.

The consultant I went to was old.

I'm sure that thyroid treatment can help some with CFS-type symptoms. But I have also come across many who it didn't help. As well as some who do have thyroid problems but also other CFS problems not caused by thyroid problems e.g. abnormal immune tests, positive for viruses, etc.

lynnsback · 11-12-2009 9:41pm

Hi Kangeroo

To be honest your thyroid dose sounds quite low to me. Most people I know who actually get well (as in all symptoms gone, not like most thyroid patients I know on T4 only meds, who still have dry hair, constipation, fatigue etc.) are on 3-5 grains of desiccated thyroid. This is between 180 and 300mg. I am not sure how much this is equivalent to what you were on, as I refused to take the synthetics. Amount needed depends on the person of course. Did you ever try desiccated thyroid? Palpitations with raises (unless of course you are raising to a crazy high level) often indicate adrenals problems or low B12, low ferritin or low iron.

There are some people who just do not do well on synthetics. Lots actually.

How much HC were you on?

Regarding reverse T3, free T3 needs to be taken at the same time and the ratio compared. What was your ratio?

I go abroad for treatment to Belgium so I get my tests done there.

kangaroo · 11-12-2009 10:32pm

Thanks for sharing your knowledge, Lynnsback.

But I should say that I always had more symptoms than were listed in lists for hypothyroidism, including long lists I saw. I can't remember know which extra symptoms - I have a lot of symptoms with severe ME/CFS but swollen glands might be one I have sometimes. Generally, what I have feels more like a chronic infection as well as starting with an infection. It is not constant fatigue. I haven't had constipation.

I was on 5-15mg of HC. Initially when I started it, I got a fungal infection on my face (which wasn't pretty!) which I presume was caused by the HC. I read that 20mg was around the cut-off point for adrenal suppression.

I have never had any mention that my iron levels are low. I'm a meat-eating male (i.e. don't lose blood through menstruation). I know when I was mildly affected (pre-diagnosis) I was able to give blood one time while a (female) friend I went in with was turned away. I think my levels have been tested a few times.

I was on B12 injections for years continuously (weekly - given by my sister) before, during and after the thyroid medication experiment. My B12 levels were never low (they actually came up high at least once I recall when I was on it) but there was a theory from CFS doctors that you shouldn't go by it.

It was clearly mentioned in a lot of the literature I read that one of the ways one could tell whether one was getting too much was when symptoms of hyperthyroidism (as opposed to hypothyroidism) started to occur. I "tested myself" a few times.

There are theories that the body in people with ME/CFS is better suited to a lower metabolic rate e.g. because of mitochondrial dysfunction or other demands on the body and that is the reason for the low body temperature found in many patients along with the slightly high TSH levels that are sometimes found. Doctors tend to be a lot freer in the US about trying things but thyroid hormones only tend to help a fraction of those with a diagnosis of ME/CFS.

lynnsback · 11-12-2009 11:15pm

Not giving medical advice here, but 5-15 may just be enough to suppress the adrenals but not high enough to make up the deficit. I don't know anyone that has succeeded with HC that low. Most people take 25-35 HC. I know one woman that succeeded on 15, but she is the lowest I know.

Like you, I got symptoms of hyperthyroidism (not pleasant) when on a very low dose of thyroid meds (15mg), but it turned out my adrenals were weak and when I gave them 20-30 HC they were able to tolerate thyroid. There are also many that are unable to tolerate synthetic thyroid, but are able to tolerate desiccated thyroid.

It would be nice if you could get optimised on thyroid before discounting that possibility. From what you say, it seems docs were of no help to you in optimising your thyroid

I just can’t believe they were calling a TSH of 5 borderline!

kangaroo · 12-12-2009 12:28am

I forgot to say that I also took T3 up to tolerance and T4 up to tolerance. I mainly took the HC as a precaution - I can't remember all the results - I know the DHEA was high (but then I queried this and found that they were using the same levels for men and women!!) and my cortisol might have been a bit unusual e.g. first one wasn't always the highest but I didn't have clear hypocortisolism from the urine or blood tests. I didn't want to have the ACTH stimulation test as I thought it would use up my adrenal reserve and I only have limited energy.

Graces7 · 12-12-2009 2:30pm

Hi

I am a veteran of M.E; some 40 yrs now, but almot 30 yrs of that misdiagnosed with being mentally ill.

At one time I went down all the avenues and had to fight for what came back negative results; although they noted so many physical symptoms also that they could not account for.

When I finally got the mental illness diagnosis officially corrected, I moved to Ireland and have had very little contact with drs since.

My choice; I am now on old age pension and seek peace. Over the years since the correct diagnosis I have become skilled at living with the illness and enjoy a very full life now.

In bed just now with a nasty cold bug.. which takes all the stuffing out of anyone..

Good luck with your quest and good health.

kangaroo wrote: »

Thanks for sharing your knowledge, Lynnsback.

But I should say that I always had more symptoms than were listed in lists for hypothyroidism, including long lists I saw. I can't remember know which extra symptoms - I have a lot of symptoms with severe ME/CFS but swollen glands might be one I have sometimes. Generally, what I have feels more like a chronic infection as well as starting with an infection. It is not constant fatigue. I haven't had constipation.

I was on 5-15mg of HC. Initially when I started it, I got a fungal infection on my face (which wasn't pretty!) which I presume was caused by the HC. I read that 20mg was around the cut-off point for adrenal suppression.

I have never had any mention that my iron levels are low. I'm a meat-eating male (i.e. don't lose blood through menstruation). I know when I was mildly affected (pre-diagnosis) I was able to give blood one time while a (female) friend I went in with was turned away. I think my levels have been tested a few times.

I was on B12 injections for years continuously (weekly - given by my sister) before, during and after the thyroid medication experiment. My B12 levels were never low (they actually came up high at least once I recall when I was on it) but there was a theory from CFS doctors that you shouldn't go by it.

It was clearly mentioned in a lot of the literature I read that one of the ways one could tell whether one was getting too much was when symptoms of hyperthyroidism (as opposed to hypothyroidism) started to occur. I "tested myself" a few times.

There are theories that the body in people with ME/CFS is better suited to a lower metabolic rate e.g. because of mitochondrial dysfunction or other demands on the body and that is the reason for the low body temperature found in many patients along with the slightly high TSH levels that are sometimes found. Doctors tend to be a lot freer in the US about trying things but thyroid hormones only tend to help a fraction of those with a diagnosis of ME/CFS.

kangaroo · 12-12-2009 3:11pm

Thanks Graces7.

Very sorry to hear of your long battle with the illness and the very long time it took to get diagnosed and how you were treated as mentally ill during that period.

I'm ill 20 years myself and it took me five years to get diagnosed. Those five years were tough in many ways. However unfortunately by the time I was diagnosed I was severely and chronically affected (probaby from following advice to exercise) and unlike you, can not live a full life although do have some contentment.

The XMRV research findings in October were probably the biggest news to hit the area in over a decade - hard evidence of an infectious retrovirus. Very exciting time now in the ME/CFS world.

Graces7 · 12-12-2009 4:00pm

When I say a "full life"??

Not by any usual standards!

Most of my day every day is in bed. That is fine by me as I have many occupations that will benefit others; which is my joy and delight. Craft work that sells to feed abandoned babies and the homeless.. and books written and more to come.

What I learned was to adapt. not fight.

Deeply thankful for all I can still do. And for all I have. And to be able to give most of all.

kangaroo wrote: »

Thanks Graces7.

Very sorry to hear of your long battle with the illness and the very long time it took to get diagnosed and how you were treated as mentally ill during that period.

I'm ill 20 years myself and it took me five years to get diagnosed. Those five years were tough in many ways. However unfortunately by the time I was diagnosed I was severely and chronically affected (probaby from following advice to exercise) and unlike you, can not live a full life although do have some contentment.

The XMRV research findings in October were probably the biggest news to hit the area in over a decade - hard evidence of an infectious retrovirus. Very exciting time now in the ME/CFS world.

LegacyUser · 12-12-2009 4:37pm

Dizzyblonde wrote: »

I'm glad your appointment went well. Once you get an appointment for the specialist you could phone and tell them you'll take a cancellation if one comes up - that can shorten the waiting time considerably.
I don't know about natural remedies but I'd imagine that taking anything that would affect your thyroid wouldn't be a good idea before you have the tests because they could cause an inaccurate result.

all, whilst the appt with the doc went well, when I eventually got a blood test, it came back 'normal'. I was having a bit better time then, the week before I was on hands and knees!
As a result of these 'normal' tests, my doc is now having difficulty getting a specialist to see me. My symptoms are pretty much text book thyroid, but without the corresponding bloods the specialist doesn't want to know.
My only other option is for my GP to give me a letter for the casualty dept, and the next time I feel really down I go to the hospital.
Unfortunately, I am really busy in work, and I am not long in my job so taking time off like that is not an option really. I have also been off sick for 2 weeks with a severe bout of this flu, with strepp throat, ear and chest infections!
there is only one wage in the house at the moment, so me pissing off my new employers is not an option. I also don't want to alert them to a possible serious illness when I am only in the job less than a year. So I am struggling to keep going monday to friday and then I spend the weekend comatose desperately trying to muster enough energy to get through another week. some weeks are better than others, and I am relatively normal.

I have finally found a GP who understands my situation, and now I am having trouble finding a specialist who will acknowledge my sysmptoms. Going private is not financially possible right now.

Feeling very disheartened right now......

lynnsback · 12-12-2009 7:25pm

Hiya kangaroo

I was on a thyroid forum today and someone was recommending a great doctor in LA for another user. I clicked on his website and found a found a lot of info on CFS. It goes into detail on things like mitochondria dysfunction and stuff you were taking about. Just click on the green dots at the end of each heading to read about each area:

http://www.holtorfmed.com/topics/cfidsfibromyalgia#j

I have read some of this guy's stuff before and he is excellent.

kangaroo · 12-12-2009 11:02pm

lynnsback wrote: »

Hiya kangaroo

I was on a thyroid forum today and someone was recommending a great doctor in LA for another user. I clicked on his website and found a found a lot of info on CFS. It goes into detail on things like mitochondria dysfunction and stuff you were taking about. Just click on the green dots at the end of each heading to read about each area:

http://www.holtorfmed.com/topics/cfidsfibromyalgia#j

I have read some of this guy's stuff before and he is excellent.

Thanks Lynnsback.

A lot of ideas on the illness have come out of the US. There seems to be more of a "can-do" attitude over there amongst some doctors rather than many doctors in the British Isles where they're more interested in Evidence Based Medicine, etc.

Although then at the same time, one comes across plenty of people on forums which give the impression that people don't always do as well with US doctors as one might expect from their literature.

kangaroo · 12-12-2009 11:14pm

Graces7 wrote: »

When I say a "full life"??

Not by any usual standards!

Most of my day every day is in bed. That is fine by me as I have many occupations that will benefit others; which is my joy and delight. Craft work that sells to feed abandoned babies and the homeless.. and books written and more to come.

What I learned was to adapt. not fight.

Deeply thankful for all I can still do. And for all I have. And to be able to give most of all.

I am pleased you have contentment. Sorry to hear you are so ill - ME affects the productivity of most people with M.E. so they can do much less of what they want to or have to do. In some cases, after they do the things they "have to do", there's not much energy left for much else.

I am fortunate in that I have lived with my parents for the last fifteen years so that has greatly reduced the amount of my energy I have to use on basic living. But that situation is unlikely to last indefinitely given my parents are aging.

Also I'd like a life outside the house - got ill at age 16. Severe since age 22.

Graces7 · 14-12-2009 9:25am

Ah you are younger than I am..... Not younger than when it all started.

I have learned to enjoy what I can do and I do get out maybe once a week to sell my work at a market. I come back exhausted and am in bed the day after, etc but it is worth it.

With a huge capacity for a deep enjoyment of small things.

I am alone; and live now high up. With so many chemical allergies, this has helped a great deal

I rarely see myself as ill now either; what is, is .

And the craft work means I can still eb highly productive while in bed so that is fine too..
quote=kangaroo;63469801]I am pleased you have contentment. Sorry to hear you are so ill - ME affects the productivity of most people with M.E. so they can do much less of what they want to or have to do. In some cases, after they do the things they "have to do", there's not much energy left for much else.

I am fortunate in that I have lived with my parents for the last fifteen years so that has greatly reduced the amount of my energy I have to use on basic living. But that situation is unlikely to last indefinitely given my parents are aging.

Also I'd like a life outside the house - got ill at age 16. Severe since age 22.[/quote]

Dizzyblonde · 14-12-2009 12:05pm

Graces7 wrote: »

a huge capacity for a deep enjoyment of small things

This positive attitude is so important. I don't have ME but am physically limited to a degree by almost constant feelings of disequilibrium/dizziness over many years. I have a lot less energy and stamina because of this too.

What's kept me sane (-ish, lol) is always hoping for recovery but at the same time taking great pleasure in the small everyday things.

'Blossom where you're planted' is a great motto.

Graces7 · 14-12-2009 1:27pm

Ph indeed yes; just written a weblog entry using that quotation.

And an older one.. to cut your coat according to your cloth. We with M.E
and other debilitating illnesses like yours tend to have very little cloth, but we can create great beauty.

Fighting a bad fluey cold now...bad luck as they tend to linger at this time of year. Ah well....

It can be hard in today's world where achievement means so much. But I enjoy life in the slow lane, or even in a layby.

Blessings and peace

Dizzyblonde wrote: »

This positive attitude is so important. I don't have ME but am physically limited to a degree by almost constant feelings of disequilibrium/dizziness over many years. I have a lot less energy and stamina because of this too.

What's kept me sane (-ish, lol) is always hoping for recovery but at the same time taking great pleasure in the small everyday things.

'Blossom where you're planted' is a great motto.

cltt97 · 15-12-2009 11:10am

Hi All, I'm another hypo sufferer battling with the meds... Was diagnosed in 2007 with severe hypo (TSH>100!) and was put on Eltroxin. That worked ok for a while but I always felt I should feel better, but no such luck, the endo was dismissive and patronising and the GP really didn't know what to do and hence didn't want to know. So I soldered on, but then had the odd hyper symptom and eventually collapsed one day, thought I must have taken an overdose or something and didn't think too much off it. Then this year the troubles really started. I started hyperventilating, I got shock waves in my head, I was so dizzy and ill I could hardly stand, I felt my head wanted to fall off my body, my pulse was fast all the time and all of that made me feel nauseous. So I stopped taking Eltroxin for a few days and then lowered the dose and voila, I started to get better. Went to my GP, had blood tests and an MRI of the brain - test came back indicating hypo (no surprises there since had stopped meds) but nothing else wrong. He referred me to an Endo but i could tell he thought I was suffering from stress or something...So then thankfully I went to see the other GP in the surgery and he doesn't write me off as suffering from stress and anxiety. He seems to accept that I've developed a hypersensitivity to Eltroxin and he appears to be willing to look into other options. Yesterday I went to a new Endo in the Charlemont and I was pleasantly surprised, because now I've been sent for a cortisol blood test, free T3 and free T4 and test for coeliac disease. He is happy for me not to take Eltroxin until we have the results and he was suggesting I try a T3 replacement therapy with very little T4 if the tests come back indicating no adrenal stress.
Only thing I was wondering now is, I've read that the blood cortisol test isn't that great, and that saliva is much better - does anyone know where I could get this done?

kangaroo · 15-12-2009 6:24pm

cltt97 wrote: »

Only thing I was wondering now is, I've read that the blood cortisol test isn't that great, and that saliva is much better - does anyone know where I could get this done?

I got mine from NPTech in the UK but they appear to have been taken over by lab21.

Their pricelist is at:
http://www.lab21.com/healthcare/order.php

(I have no commercial interest in this company)

kangaroo · 13-01-2010 4:30am

Dr Holtorf's site was mentioned by someone earlier in this thread.

Some people might be interested in the recent (San Jose, California) newspaper article, Ups and downs of thyroid disease, by Jessica Yadegaran at: http://www.mercurynews.com/bay-area-living/ci_14150353?nclick_check=1 in which he is quoted amongst others.

Advice on what to ask doctor and how to ask it!?

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