I have fibromyalgia but I am increasingly wondering about hypothyroidism. I am in my mid 50s. My worst symptom is fatigue which has slowly and steadily progressed. I feel the cold and I have gained a lot of weight in the last few years though there are other factors at play eg approaching menopause and also I'm on anti-depressants. (I used to be very skinny and if anything a bit hyper in my teens and twenties)
I asked for my thyroid levels to be tested again and once again they came back normal. I asked the nurse what the actual levels are and she told me 0.74. I know that here in the UK they can come back 'normal' and still be regarded as low by the standards of other countries eg in the US they can be viewed as low.
Looking online I am assuming that the Free T4 test (described below) is the one I had because these were the only numbers that fit:
'If your doctor ran a test called Free T4, or Free Thyroxine, normal range is approximately 0.7 to 2.0. If your result was less than 0.7, your doctor might consider that indicative of hypothyroidism'
They also tested for antibodies and it came back negative.
So if this is the case it seems that I'm at the very low end of normal. I would love to know others experiences eg what this means, what your levels are, whether you've been prescribed anything (even if in normal range), what you prescribed and whether it helped. And did you have to push for it.
Many thanks
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Kirby
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It is unusual to do a test for free T4 without also doing TSH. The more normal action is to measure TSH only, which is not regarded by any of us on this forum as very helpful. It would be useful if you could call and ask your practice for the reference range used by the lab and confirm exactly what was measured. If this figure is definitely free T4 then it would seem you are hypo and I am surprised they would send you away with no treatment. The normal route would be to prescribe Levothyroxine and you will soon start to improve. Beware of being left for months on a starter dose like 25 mcg, as you should be slowly increased to a higher dose. I hope you get the help you need. By the way fibromyalgia and depression can both be caused by being hypo, so those should improve too.
Thanks very much for your helpful information, Hennerton. It's much appreciated. I just asked for a thyroid test and one that measures thyroid antibodies. Would these be T4 and TSH? The antibodies one came back negative but she gave no figures. She didn't seem to have anything other than 'negative'. Can I get a figure as to what the actual figures was? Thanks
It is always the hardest thing to get help for hypothyroidism, I have struggled to get diagnosed for over 10 years! I was tested for antibodies all that time ago & they said it was positive & my thyroid was working overtime to keep up. But no medication was given because I was still in "range". I have only got medication in the last 3 years through going to see a private consultant (uk). It has helped enormously as I was really bad with infection after infection , allergies, fatigue, blackouts & swinging from hypo to hyper ( hashimotos ). Now I have fibromyalgia and can't tolerate gluten or I get awful bloating & stomach pain. I think that they are all interrelated. I too am female and menopausal.
I should just keep asking your doctor to refer you as the blood tests at the hospital seem to be far more in depth with free T4 , T3 TFT etc. don't give up ! Take care
Ah thanks El. Sorry to hear about all your struggles too and my sympathies re fibro and being menopausal! So if I asked for blood tests at hospital I would get a more in-depth/accurate indication? Do I ask my GP to refer me to an endocrinologist? Thanks lots for your help and advice.
Bloods from a GP are just sent to the hospital labs for testing, so will be exactly the same tests. And don't bet on the hospital consultants being any better at interpreting them, mine most certainly isn't! The only possible benefit is that the endos can usually get the labs to test t3&4, whereas they ignore the GP request for anything other than TSH. You really need to get a copy of your results so that you can see exactly what has been tested.
I think it may help you to go back to your GP practice and ask for a print out of the full test results including their reference ranges. You are entitled to these although you may have to pay a small fee for printing. Then post them on here and people can help interpret them. Your symptoms certainly sound like hypo. A lot of people see fibromyalgia as a symptom of hypothyroidism. If your surgery has only done a TSH test or T4, then could you ask to be retested? Or perhaps have a private finger prick test done through Blue Horizon who give TUK a discount?
Many thanks Lisabax - that's very helpful advice. I asked to have two tests done - the thyroid and thyroid antibodies but I'm not sure the names of them. Wish I'd known before I asked for them!
Raised LFTs? Do they come as standard too? The endos at my local hospital took me off T3, left me un-medicated for nine months and then discharged me (still un-medicated) because my LTFs were raised.
Hi, I guess that is your tsh level, which is low, mine was 6.6 . I also have cmt, which is a muscle disease, I too thought it was that causing me probs, aching muscles like crazy, so much so I take painkillers. Weight gain , fatigue, falling hair, brittle nails, I put it down to menopause, then found I had a lump, sore throat , anyway long story short, I had surgery part thyroid removed, have second op on Saturday, I have cancer, but contained and slow growing plus chronic thyroiditus. I not on meds but I take, vit d3 , aloe, magnesium, black seed oil, and coconut, I feel much better and lost 3lbs this week, coconut oil is amazing. Fruit, seeds, low dairy, low gluten, lots veg...it's tough but feeling better is worth it......xx
Very sorry to hear about your cancer and best wishes for Saturday. It sounds as if you've really been through it. I take Vit D3 from health shop as can't tolerate the ones that are prescribed because they make me constipated. I try and get the sunlight when I can!
You need to expose 40% of your body at midday in full sun for at least 20 minutes to benefit from the UVB rays. VitD then synthesized in the skin with the help of cholesterol ! If you are constipated - it is another Hypo symptom - maybe try magnesium and good levels of VitC to help things along.....
It depends on the time of year re sunlight and also the availability of the sun. I expose it for a lot more in the summer, like most, but wouldn't expose it at midday during summer, whereas I would in spring and autumn. In summer I expose after 3 pm as a rule and often for longer and I use low factor sun cream. Magnesium makes me constipated too so had to ditch that.
Hi Kirkby, Fibro is a symptom not a disease and more often than not it's a symptom of Hypothyroidism. I agree with the others I think they've just done a TSH test. I would suggest getting more tests done, maybe privately if your purse allows.
I am on a fibro site and have been diagnosed with fibro and it is most definitely a condition as ME and MS are. But there are overlaps with other conditions and I think hypothyroidism could be one. I asked for two tests 1) a thyroid test and 2) thyroid antibodies. One came back as 0.7 and when I asked about the other she just said 'negative'. I felt I was being fobbed off and no opportunity to discuss in detail. I wasn't even sure if she had the details there tbh.
You must request a printout of your results with lab ref ranges, otherwise it's all guesswork. If the surgery wants to charge more than a few pence for printing your results you can ask for an appointment to see your records on line and make your own notes.
Hi Kirkby, sorry I explained badly, yes it's definitely a condition but not classed as a 'disease' e.g. Hypo. It's appeared because of 'x,y,z' and a decent doctor would bother finding out why. Yes I think you're being fobbed off. It sure makes my blood boil!
No worries, Sazzy. It's just that many people with fibro have got fed up with it not being taken seriously and all this stuff from Unum in the States and now being used over here where they don't 'count' illnesses like fibro/ME etc unless they are in their words 'diseases'. Many in the States especially and increasingly over here have been denied what's owed to them because of the way insurance companies deny the existence of fibro and ME.
But yes I do feel I'm being fobbed off and it sounds as if hypothyroidism is denied even more than fibromyalgia
Thanks RFU - I asked for two tests. 1) to test my thyroid and 2) to test for thyroid antibodies after reading an in-depth article. When I phoned up for results yesterday they said 0.7 and when I asked for the other she just said negative. My Vit D levels were done as I asked for them. They were done twice before and I had Vit D deficiency. It's still low (43) but not as low as the last two times. I put that down to having had a bit of sun lately! I can't tolerate the Vit D3 vitamins as they made me constipated so I get these from health shop instead though sun is the best source.
I'm in your age range and have been Hypothyroid since the age of 27. My condition started during my postpartum year. I agree, I'm currently going through the worst case of fatigue I've ever had my numbers are 0.5 I didn't have to push for the Diagnosis since being post parturition with excessive periods, it was very obvious. I'm on Synthroid at this time and wondering if something else might be better although my number has never changed over the years. At my next Doctor visit, I'm going to ask about my adrenal gland because something has caused my down turn in energy. I'm used to having poor energy but, where I'm at is beyond "poor energy" my hair is coming out and I'm spending too much time resting during the day.
Thanks for your helpful response, Vickie, and very sorry to hear about your fatigue. Yes, I get bad fatigue too and it seems to be getting worse but no help for it.
Why don't you post in Fibromyalgia and ME groups and see what kind of response you get from them? It is bad enough that the DWP are denying our conditions but I don't expect someone on these boards to dismiss our very real conditions as 'nonsense diagnosis'.
The health insurance companies eg UNUM in the States (and increasingly over here) have robbed people of their benefits just because they didn't want to believe that Fibro and ME were real conditions so they didn't have to pay up.
I'm sorry about your family's misdiagnosis but that does NOT mean that ME and Fibromyalgia don't exist. I am sick of disability deniers. I could point you to a vast body of research but would not dare to presume that you know nothing and would kindly ask you don't make the same assumptions about me. I am a regular poster on Fibro boards and your post was offensive as the DWP's denial of their existence.
Hi Kirby, I really don't want to get involved in a heated debate but I do know that we are all genuinely trying our best to help each other on here I don't think reallyfedup is denying your disability at all - they are of course very real and debilitating symptoms which you are experiencing and I'm really sorry that it has happened to you. I do not know much but I think the headings "Hypothyroid", "ME" and "Fibro" can be quite confusing as there seem to be so many different causes for the same set of symptoms which many doctors are unwilling to investigate the root cause of. No matter what heading we are put under by our doc I think many of us are all in the same boat. Have you checked out Dr Myhill's website? There might be something useful there to you. Take care xx
Thanks DiamondFire - I totally accept what you say - what I found unacceptable was the statement 'Fibromyalgia and ME are simply nonsense diagnosis' and then trying to diagnose whether or not I have hypothyroidism! I hope you see why this was upsetting and dismissive not just to me but the fellow sufferers of Fibro I come into contact with every day.
Yes I can see how it may have come across as offensive. I think what was meant by that phrase was that it doesn't make sense for doctors to make a diagnosis of exclusion when they haven't excluded every other cause properly - Dr S was all in favour of a trial of thyroid hormone irrespective of blood results to see if a patient's ME symptoms improved, concluding that the patient was in fact hypothyroid. And even if every other known cause has been excluded, the body is so complicated that there are many other things which could be going wrong but nobody knows about/has discovered yet. So the end result is that lots of patients are all put under the same ME heading when many of them actually have different things going wrong inside their bodies. This is just my interpretation anyway. The story you posted in the guardian is really very very tragic indeed and these patients desperately need help xx
I just wanted to add that I think patients with a diagnosis of ME and fibro should without a doubt be considered as having a disability. It sounds like the insurance companies have lost their heads! Disgraceful.
Yes, this has happened in the US - lots of information online about UNUM and in this country they advised the DWP and are related to Atos. UNUM were banned from several States in the US and successfully sued by many people particualrly those suffering with ME and Fibro because of their 'disability denial' attitude. There is an awful lot of misinformation about ME and a lot of it has been suppressed. It is true that what many people call ME isn't actually ME. ME is very serious and people don't recover from it. The term Chronic Fatigue Syndrome is often used interchangeably but again this was termed (I think) but the US insurance companies in order to downgrade it. X
Yes I do dislike the term Chronic Fatigue Syndrome. Just as much as I dislike the term "subclinical" hypothyroidism x
in reply to
Ooh and something I thought of just now was whether you have had your T3 levels checked? If all your tests have been done by your GP probably not as it is very expensive but if you can afford to have a full thyroid profile done privately through the ThyroidUK website that might be really helpful actually. Some people can have a low TSH like yours but also a low T3 level so get missed on the standard thyroid screen of TSH, and T4 too if you're lucky. They also won't check for rT3 either which you may have a problem with so you could get that done too. If rT3 is too high it causes problems. So I think it's reasonable to still investigate the hypothyroid route with a TSH of 0.7 - if it were me I wouldn't completely rule it out yet based on your current results
I really don't know what they checked now! I'm confused because it seems as if my low TSH level is more consistent with hyperthyroidism than hypo. But as you say if none of the others have been checked then it would be meaningless. When you say going privately through Thyroid UK how much would that cost? I am on benefits so don't have much money. Thanks
Try this link. I have used Genova before now and they have been good. You can just post your blood back by Royal Mail special delivery which only costs £6 which is cheaper than the courier service.
As I think others have already suggested, if you can get your results printed out from your GP's surgery with ranges and post them on here then people should be able to help you a bit more technically it is your legal right so if the receptionist gets arsey then you must stand your ground
God alone knows! The NHS is a law until itself! Your GP surgery might, but some refuse. The phleb service is on the main TUK site under testing, I think cost depends on where you are. For the fingerprick ones you get little stabbers like diabetics use so its very quick and not painful. Then you squeeze some blood into a little pot. Quite easy
I think as so often happens you have had the very basic of thyroid tests done. I am fortunate to live in Crete and when I was diagnosed in 2005 the full panel was done - TSH FT4 FT3 Anti-Tpo Anti-Tg...
I think it is important to have the full panel done and have the tests done early in the morning when the TSH is at its highest. FT3 is the only ACTIVE thyroid hormone in the body and required by 13 trillion cells - so that's a lot of T3. So if hormones are low then things begin to go wrong. Have a look at Low T3 syndrome. T3 is so rarely tested on the NHS due to expense. I think if a poll was done on Fibro-Action about FT3 and who had had it tested and their results I think things would be different. In my opinion - at least rule it out with PROPER testing and not just the TSH or the TSH and FT4. At least give people a chance to find help of the correct nature.
Thyroid hormones are not drugs - and when I read the lists of drugs taken by people on FA then I am not surprised they are in pain and possibly suffering from toxicity. I too was diagnosed with Fibro over 14 years ago. However in 2005 I had my thyroid tested and was found to have Hashimotos. My improvement in health has been a revelation. My cousin lost her career as a Physio in the 60's to ME and she became one of the founder members of the ME Society. When I was diagnosed in 2005 she too was tested - and found to have Hashimotos - so sad.
Referring to involving moderators on this forum and Rods reply I would like to say that sometimes there is a heavy hand on some forums and one has to ask the question why. I once posted on FA about Magnesium and the help it can give painful muscles - it was deleted as the website was selling products. I questioned such helpful advice and was banned for three weeks - so left. Could not understand why people can talk of their list of medications that is probably killing them but I wasn't allowed to mention magnesium.
Take a look at my Profile - and all I take is T3 and supplements.
I hear what you're saying. But I'm also very wary about 'evangelism'. That is that 'this is the answer for me and therefore is the answer for everyone else'. Even people with the same condition have a huge variation. And even the same person over a lifetime can react differently. It is very easy to dismiss what others are taking and using and you do make a generalization as if all people with fibro and ME are all taking lots of drugs. I don't actually take many drugs (relatively) myself but I know they help when I'm in pain and don't think it's necessary helpful to take a judgmental attitude. I am one of those rare people who knows how to use 'sometimes' and/or 'occasionally'. That's why my GP prescribes me tranx. The addiction is not in the drug per se.
I'm aware that thyroid issues are not (for some unknown reason) getting the recognition and I'd be interested in why that is historically or politically. But there's also a helluva lot of misinformation that's bandied around re Fibro and ME. ME and CFS are not the same thing although they're used interchangeably. Again, there are political and scientific reasons why this is case.
Re the selling products issue on the Fibro site - that is just one of the rules about selling products and was nothing to do with the beneficial effects of magnesium. It's because people come on there with products, books, latest therapies to sell. It's fair enough to have a rule that applies to all.
Thyroid UK ALWAYS states clearly that everyone is different and just because something worked for one person this never means that it will do the same for someone else..
Yes I went along to my local hospital's phlebotomy dept with the package which Genova sent me which contains a 'phlebotomy kit' - tubes, swabs etc. I paid them £15 and the nurse happily took my blood for me. I think I went for the more expensive Thyroid profile which includes rT3 and was something like £130.
Not cheap then!! I guess you have to be sure there's something wrong. And what do the GPs make of it if you come back and say actually I've got this level and that level. Couldn't they just turn round and say the tests aren't bona fide or some such thing and therefore not prescribe you anything?
Very good question! I think it depends on whether you have a good GP or a bad GP and what your results actually are. I don't know what other people's experiences are of taking private results to their GP but I can say that my current endocrinologist looked at them and filed them away in my folder. She did not dismiss them although we didn't really discuss them in detail. Perhaps you could post another question on this and find out. I would imagine that they would seriously consider TSH, fT4 and fT3 results and antibodies but I think you would be on dodgy ground with rT3 (this may be a road you would have to tread alone or perhaps with Dr P - I don't know, I haven't looked into it, although I do know that TUK don't recommend self treating). You might be able to get them to refer you to an endocrinologist though, if only for a retest.
I have also read somewhere (can't remember where!) that blood levels take time to reflect the clinical picture, so even if your results come back "in range" (does not necessarily mean "normal") it would be useful to have them for future reference as you can compare any future tests you have done.
Also, what time in the day did you have your blood taken for this most recent TSH test? V important... x
The trick is to have your blood taken as early in the morning as possible as that is when TSH is at its highest. As soon as the lab opens. It's possible that your TSH may have been over 2 at say 8am which Dr P suggests is indicative of hypothyroidism.
Perhaps you could try taking your basal temperatures in the morning to see if they are low and whether they indicate adrenal fatigue.
Lol, I would never get there for 8 am. That is the middle of the night! I did take basal temperatures for a while as this was suggested in a fibro book which mentioned hypothyroidism. The basal temps were low but when I mentioned them to my GP she said something along the lines that they weren't used much these days, indicating that they weren't that reliable? I can't remember to be exact but it was along those lines
I think lots of doctors have different opinions and approaches, and the trick is to find the doctor that works in the way which your body needs. No I don't think any GP would consider basal temperatures and probably very few endocrinologists so that doesn't surprise me. But that doesn't mean that they are right in their view. Dr Peatfield uses basal temperatures all the time as part of his treatment protocol. All I can say is that the thyroid world is messed up, and doctors who you may put your trust in may let you down due to being misinformed. This is what I have picked up from reading posts on here and my own personal experience. You know your body best.x
It could be that your pituitary isn't making as much TSH as it really needs which is why it is low. In that case there may be something wrong with your pituitary gland or your pituitary is suffering the effects of hypothyroidism and is unable to make as much TSH as it needs to. I know, it is confusing isn't it
That's interesting because I have a friend who has had all sorts of pituitary problems that related to the thyroid. She had a benign growth on her pituitary gland and kept having to have it shrunk combined with tablets so that she the gland didn't produce too much or too little, something about getting the balance right between the two. I know it was very complicated!
I phoned the surgery this morning and no, it is TSH level that is 0.74 and the other one is an antibodies one (she gave me the name but it is upstairs, lol). She did say she would send me a print out. So no, I've not had T3 or T4 done.
Sorry to jump in but I was wondering if you would mind explaining a bit more about saucepans etc please? I'd be really interested as I've not heard that before. My saucepans are really old so maybe I should chuck them out?!
With respect, it seems you have fallen for the same propaganda and misinformation about ME and Fibro as UNUM et al have perpetuated. I have many many articles. here is just one of many:
I accept that hypothyroidism an Lyme's Disease aren't recognised or properly investigated in this country but neither are Fibromyalgia and ME and frankly your attitude is damaging.
And please don't attempt to diagnose me via an online board. You are not qualified to diagnose whether I have or haven't got hypothyroidism nor to dismiss fibromyalgia as not being the cause of my symptoms, only a few of which I have mentioned in the OP.
I wish somebody from admin would come and moderate because I am finding this completely out of order.
Admins here try to moderate with a very light touch. Most of the time some sort of mutual acceptance is achieved - though sometimes not.
If you wish to put in an abuse report, simply click on the word Report next to any post/question/response you consider out of order, and explain briefly why.
It looks to me as if the Free T4 range you found was in the units used in the USA (ng/dL). Our units (pmol/L) typically end up with ranges such as 10 to 22.
However, I agree that it was much more likely to have been a TSH test.
In my view, someone who has symptoms that could be due to hypothyroidism simply must have Free T4 done (and, ideally, FT3 as well).
Thanks Rod. So is 0.74 in the normal range for TSH? I got the feeling from the figures that below 0.7 was hyperthyroid rather than hypothyroid or am I getting confused with something else (bearing in mind that I need to know the local lab references range as advised by others).
Typical ranges might be 0.35 to 3.5 or 0.4 to 4.9. So, I suggest, 0.74 is slightly lower but nothing very significant.
Trouble is, that is based on the idea that your body is working properly. As soon as you suggest that the hypothalamus or pituitary are not operating properly, you could have such a result but actually be hypothyroid. That is why it is so important that, for example, Free T4 is tested. Then it can be seen whether TSH and FT4 reflect each other.
The typical approach,which results from the combination of what GPs do and what labs then decide to do, runs something like this:
TSH in range - that's it.
TSH high or low, then FT4
Extreme cases or when a specialist endocrinologist requests, maybe also do an FT3.
Occasionally a GP will request TSH and the lab will themselves decide also to do FT4. But more often a GO might request an FT4 and it simply does not get done. Even more so an FT3 test.
After much thinking, the only answer I can come up with is cost.
Sure, many medics seem to think that TSH is such a wonderful test nothing else is needed. If it is so wonderful, what harm would there be in other tests confirming the TSH result with FT4and FT3? So it always seems to be cost.
Mind, some medics might find difficulty interpreting some of the conflicts that sometimes appear between the three tests. So intellectually cowardice? Running away from that they don't understand and cannot explain?
And, at present, it certainly looks like TSH is cheap, FT4 getting a bit more expensive, and FT3 is quite expensive. If they were one-off test it might be easier to argue, but when they are repeated it starts to look like a lot of money.
I suppose that makes sense. I haven't a clue how blood tests are costed but it seems that when they take a sample and they do a whole batch of tests, surely it's more cost-effective to do all the necessary ones at the same time? But in the scheme of things, are blood tests so expensive? As I say, I have no idea but I would have thought compared with other things they wouldn't be. But I take your point about the need for repeating them. At one point I was told that Vit D test was expensive and missed out on one time but insisted on it this time.
About the only blood tests I know costs of are vitamin D (one NHS lab offers it to the public at £25 a test when other labs charge £60 or more to each other), and Full Blood Count (apparently around £20 because it is so commonly requested and highly automated).
Looking at Blue Horizon I was somewhat surprised that the test itself costs around £20 for FT4 or FT3 and around £70 for TSH. (Each a single test - "panels"of tests available at effectively lower cost per test.)
Must say, am surprised at that. I had always thought TSH was cheaper by some margin. Mind, costs within the NHS might be very different.
When I started feeling really unwell, my TSH was 6, fT4 16, fT3 5 or 6, then a couple of months later TSH was 2 ("normal"), no other tests done. So I was considered "normal" as everything was in range and "normal". I now know that despite these so called "normal" levels I respond well to Armour Thyroid. Having dug out some really old blood tests from before I became unwell I now believe my T4 levels are naturally at the lower end of the reference range and my system was clogging up with unusable T4 and making me unwell - even though a T4 value of 16 is perfectly normal for some people. It was not normal for me.
And yes I was banging my head against a brick wall with my first GP for ages (she hated me in the end, so I hated her), so I saw a private endocrinologist who didn't help, then after a year of feeling utterly dreadful I saw Dr S as I was fed up but was pretty sure I had a thyroid problem and GP agreed just to shut me up. So to answer your original question, yes, thyroid patients really do have to push to be heard. The key is getting really clued up on it so you know when you are being fed rubbish. Other people might suggest other books (maybe Dr P's?) but I think Dr S's could be a good place to start in terms of symptoms and what he has to say about blood results.
Something you could also do is ask for copies of all the blood tests you've ever had done to look to see how any thyroid results have changed over time. You may have had it tested years ago but were unaware that it was done at the time.
I have had it tested over the years, certainly. I think the nurse that I spoke to today is only going to send me the last lot though
Additionally I would recommend reading Dr S's book if you haven't come across it already. There's some very useful info in there that might help.xx
P.S I have just realised that if you are new on here you may not even have heard of Dr S and his work. He has saved many many people on this forum and thousands from all over the world. Unfortunately he has now passed away but I would seriously recommend researching him.
Thanks that's really interesting. Will have to rethink using tin foil! Although I think cling film is supposed to be just as bad for you :-s can't win! x
I'm sorry but many people don't believe in 'homeopathy'. I'm not going to take your stance and dismiss it as a load of bunkum though many do. I suggest you also read up about some incisive and thorough research about ME - what it really is. I've got some very thorough research on my computer but I'm not going to spoonfeed you. First you have to do what scientists do - have no preconceptions, do empirical research, read, gather information - you certainly don't dismiss when there's a body of evidence.
Yes I am tempted to go out to the middle of the countryside and live in a field as nature intended!
I've seen homeopaths and have used homeopathic medicines. Did they help? No. But just because I haven't been helped by them doesn't mean they don't help others. Similarly, just because you and your doctor don't know what ME is, doesn't mean that others don't. I agree many GPs don't know what it is but that is their ignorance. Incidentally it is not 'my' ME research. I am not a qualified researcher at least not in that field.
But if you really want to learn more about ME instead of perpetuating myths and misinformation, here's a link for starters:
As a final note, I do think it's a unwise setting yourself up as an expert on here when you clearly are not. Yes, you can speak from personal experience but leave the diagnoses to the experts. 'A little knowledge is a danger' as they say
Actually I have a good GP. And to give her the benefit of the doubt I've not asked her for the full range of blood tests because I didn't know at that stage what they were
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