I saw a story on the news tonight that doctors have "legalized" chronic fatigue syndrome and recognized it as a disease called Systemic Exertion Intolerance Disease. But I wonder. They listed the symptoms: fatigue not relieved by rest, brain fog, feeling better when lying down. Sounds a lot like undiagnosed hypothyroidism to me.
Chronic fatigue syndrome???: I saw a story on the... - Thyroid UK
Chronic fatigue syndrome???
Written by
teenarocks
To view profiles and participate in discussions please or .
Read more about...
69 Replies
•
Many, but not all, people with ME/SEID are treated hypothyroid patients. My thyroid function results are extremely good but I still suffer with Fibro/ME.
please read the link i sent to teenarocks. You can totally have normal labs and be thyroid hormone resistant. This doctor "cured" all his fibromyalgia patients with Thyroid hormone etc..
It is Hypothyroidism, so is ME and Fibromyalgia..they do all the wrong tests and or don't know how to interpret them, and say someone is heathy when they are quite ill.. also people can have normal test results and be Hypothyroid, those with Hashimoto's can have normal labs and symptoms. read this..unbelievable!!!
Hiya
My son has had "Chronic Fatigue" (M.E) since he was 9, he's now 19. Believe me, if it was thyroid, he would be OK by now. (I had a TT 2 yrs ago due to Hashi's)
He's been tested for hypothyroid, as is everyone presenting with CFS symptoms.
Unfortunately, the description of CFS in no way covers the full range of problems, which also include:- extreme sensitivity to light & noise, crippling all over body pain, total body collapse & episodes of paralysis. Also, for my son, seizures. He lost all his friends and missed most of his secondary education. 
Best wishes Nicky
Exactly how I've been for nearly nineteen years. No one, except those who live with it, know how severe and debilitating it is and how the whole body is effected. It's so trivialised as... tired All the time... I am now having hypothyroid readings too. I'm under Dr myhill. Her website is v good. I'm so sorry about your son and all your family. God bless you all and I send you love and prayers
You have probably know this, but just in case: How is your son's B12? Neurosymptoms could be caused by that. See for instance candobetter.net/node/4463
Faith, I have been hypo for 20 years. I tried so many different combinations of meds etc... I have seen no significant change to my ME symptoms. Currently on NDT and T3.
• in reply tocarolpartyqueen
Same here carolpartyqueen. My original diagnosis was ME and thyroid meds have done nothing to resolve these symptoms.
Oh my, I'm only just starting on this hypo route and the more I read, the more confused I become. I've given up on my gp as in 2 years all he done is full blood count which never seems to include the ones recommended on here, and I feel so ill every day, he's offered me anti depressants, I've saved up and am now ready to try a private doctor who specialises in thyroid problems
At the moment, what you have quoted teenarocks, are recommendations re a change in the name and diagnosis of what is known at present as ME/CFS or CFS/ME, by the Insititute of Medicine in the U.S. It's not perfect, but is an improvement on the current diagnosis or name in my opinion.
I was diagnosed with hypothyroidism 20 years ago. In spite of treatment with T4, I developed symptoms of ME/CFS, and also in spite of optimising that treatment with many blood tests etc, done privately, taking supplements, changing diet, using T3 as well as T4, and then solely T3, I STILL have ME/CFS. Yes, adrenal issues are also part of it, but probably not the whole picture though optimising them does help.
So - not just undiagnosed hypothyroidism.
Perhaps a disease of modern life then (like total allergy syndrome was in the 70s - might really have been AIDS???) - after all we bombard our systems with mercury, fluoride, xenoestrogens, EMFs and who knows what else from a very early age. Not surprising that something gives.
I have ME and I don't think my symptoms are the same as people with thyroid probs like my husband who is low thyroid. There's a lot more to it, as people above had said.
fumanchu, do you know how many known symptoms there are for hypothyroidism? About 350 - and there are probably others that aren't listed. And you don't have to have them all to qualify. The thing is, if you have more that five (they say) it's more than likely hypo (but in reality, you can be hypo without having any symptoms at all). Besides, it is 100% impossible to say that a symptom definately isn't caused by hypo - unless you prove it's caused by something else, and you can only prove that by curing it - because every cell in the body needs thyroid hormones, and any one of them can go wrong if they don't get enough. You just can't prove something isn't due to hypo.
I think I just gave up hope really. The thought of having to go down there yet again and ask for more tests and get that sigh from the other side of the desk... you know? And they just keep repeating the same tests that keep coming back normal. I don't know what else I can do at all.
Post the results on here and let us advise you. And ignore that sigh! How dare they behave like that with sick people! If any doctor sighed at me, he'd get a right mouthful - as many of them have!
What tests do I ask for? I'll try it, with you lot behind me. Thanks x
Well, I'll give you the list they should do - only they don't always, I'm afraid.
TSH
FT4
FT3
TPO
Tg
iron, ferritin, vit D, vit B12, folate.
These are the basic tests for diagnosis. Ask, and see what happens. Getting just some of them is a start.
Grey goose, I wish I was as brave as you, I get That sigh from my doc, example, my memory is failing me, reply, get a dictaphone like mine, I'm constantly cold, wrap up warmly, I have a hernia, wear big pants, my feet are sore and tender, its policemans heel, get some of these shoes like mine, and the most common one.... We'll take some blood
Nanalinboy, it's not bravery, I can assure you! l just have an uncontrolable temper at times (thyroid?) and don't even think about what I'm doing. Twice I've unarmed Young men with knives, but it had nothing to do with bravery, I just didn't consider the implications. Another time, I walked straight past a man that was pointing a gun at me in the metro - well, he didn't say to stop! (Oh, I lead such an exciting life! lol) But if things had gone wrong, I would have had no defence because I didn't think things through. A lot of what appears to be bravery is just pure stupidity. lol So, when a doctor gets up my nose, I just explode and tell him what I think. But that's not every time a doctor gets up my nose, because sometimes I just don't feel well enough, or have the energy to react, so sometimes, they get away with it! Which makes me cross with myself afterwards.
When doctors say things like that to you, do you say something like, ok, I could get a dictaphone, but it's not normal (they love that word) to have such a bad memory at my age. Or to feel so cold in this weather. No, it's not policeman's heel, I'm a secretary (or whatever) and shoes like yours would look rediculous on me because I'm a woman!!! In case you hadn't noticed. And as for the hernia, why are they ignoring that??? There's an operation you could have to correct it, why aren't they sending you for one? That is negligence!
I'm afraid we have to stand up to doctors sometimes. If they always get away with being rude, then they're going to continue being rude and unconcerned about the health problems of their patients - which means they aren't doing their job. Everyone else has to do their job, so why not them? If you're a secretary and your boss asks you why you haven't typed that report, telling him that you just couldn't be a**ed si not going to cut it, is it. So, make them work for their money, put your foot down and firmly, but politely, insist! That is what you pay your taxes for, to get medical help when you need it. Oh, I do go on! lol But you get the picture. After all, what are they going to do to you? The worst they can do is shout. Shout back. I do. They have no right to treat you that way. They are in no way in a position of authority over you, they should be working with you. I'll shut up now. lol Lots of hugs.
Fumanchu - never accept the word 'normal '- what they mean is that is in within the range laid down. What is normal for one is NOT normal for another. How can it be ? It is the way they keep people ill - by adhering to the ranges and not listening to the patients and using their eyes and ears. Like they had to do before blood tests were the main part of medical diagnoses. Remember Western medicine is only 100 years old - and how long have we been on this earth ?
You could be very bold and say - Excuse me Doc - but what do you mean by normal ? Am afraid there won't be an answer 
Before the blood tests and levothyroxine were introduced and Big Pharma gave a push for the use of levo only, whereas since 1892 we would have been diagnosed by clinical symptoms only and been given NDT. Since the 60's when new diseases were named, one of the doctors was asked to see patients who had 'mysterious illnesses' - he was a virologist and the medical people thought these may be caused by a Virus. Unfortunately for us Dr Skinner died two years ago but this is how he became involved.
worldthyroidregister.com/Go...
I doubt if you asked any doctor to name clinical symptoms, he would be hard pushed to come up with two and they don't ask family/or medical history. So my supposition is that even if these people didn't have a thyroid gland dysfunction, that the thyroid hormones
helped relieve their symptoms.
When doctor Skinner was trained as a medical student, all of the students were taught the knowledge of clinical symptoms of hypothyroidism and diagnosed thus. Unfortunately most have now retired or died.
Here is a list of 300 hypothyroid symptoms that might interest you, fumanchu. And as greygoose says, there are probably more symptoms that could be added to it.
And you're right tinarocks,undiagnosed hypothyroidism has been discovered in up to 400% approximately of CFS/ME sufferers.I know because I am one of them.I met all the criteria for CFS in 2012,after a year of becoming increasingly ill I sought out one of the few CFS//Me specialists' in Ireland,he is also a . and very highly qualified and,more importantly,knowledgeable.Within 15 minutes of questions about my health and a brief examination he surmised an RT3 problem,and probably a related adrenal function problem.Because Ireland doesn't routinely do such advanced blood analysis I had to pay €550 to have my blood samples sent to France for testing.The results came back as he had anticipated,an elevated RT3,but more importantly the ratio of FT3 to RT3 which should be over 20 was 2 in my case.Yet my basic thyroid tests were all within range,albeit at the very bottom of 'normal'.What amazed me was that your TSH could be 0.1 within range so you're considered as healthy as the person who is in the top quarter of the range..it's simply not possible for those 2 people to feel equally healthy.That's like me telling a parent that their child who scored 4/10 in a. school assessment should get the same attention,and no more,as the child who scored 9/10...the difference between the two is huge.But try telling your doc.that...most of the time they won't even give you your lab results,or the hospital may just have sent forward the label...normal.My adrenal function test,DHEA,measuured 6...the range being 3.4 to 33.For my age,almost 50,he said that it was less than half of what it should be.My 11a.m cortisol was 230...the range being 170 approx to 540 ..•It should be at it's highest first thing in the morning and slowly decline naturally over the day.My morning cortisol was closer to what it should be about 19.00.So yes,in my case thyroid gland problem with adrenal glands problem were very much is precipitating fator in my CFS/ME.But helping those conditions doesn't cure the ME,,but it does help.I am now on T3 only 20mcg daily and 25mg DHEA,they have made quite a difference but ,as my consultant said from the beginning,if these are part of your problem I can help improve your quality of life,but I cannot cure you,we simply do not yet have enough knowledge to be able to find a cure.I am one of the "lucky" 40% where thyroid gland and adrenal function were contributing factors,the remaining 60% are not as fortunate,what works for some won't work for others,some can have it 5 years,others 10 and yet others a lifetime.Some are house bound,some are bedridden,some are in wheelchairs,some function on a "semi-normal" basis,struggling constantly with fatigue,aches,viruses etc.Having just finished a very high 2 weeks course of steroids for a perforated eardrum and general severe inflammation I can say that it was like having a holiday from pain and CFS...I had energy,I could vacuum more than one room without needing a break,I RAN up the stairs one day without thinking,and I didn't collapse at the top!As well as it being wonderful to be pain free,bar the perforated eardrum,I realised also how very debilitated I am on a day to day basis with ME.Research is ongoing,doctors in Ireland are llight years behind in their knowledge and testing and openness to think outside of the various lab.numbers,quote my consultant "The doctor must LISTEN to the patient,you will learn much from them".I wish we had more of his type around.
Which doctors are they light years behind, they are all ignorant and generally uncooperative when it comes to m.e lol. Also there is no such thing as 400% of a group.
Doesn't taking the steroid make you think perhaps you actually need hydrocortisone for your adrenals as well as dhea?
Hi Sulamaye,my mistake about 400%,it was meant to be 40%.This statistic is from my neuroendocrinologist who specializes in ME and has a very broad minded approach to tests,believing that they are not the be all in terms of diagnosis,he considers symptoms and whether one responds to meds a more accurate sign...would that there were more like him.Yes I have wondered about being on steroids more,but I was put on prednisone which is pretty strong and can have many side effects,one of which is to suppress your body's natural production of cortisol which is what we are aiming to restore.Problem is my cortisol and DHEA being low indicate severe adrenal exhaustion,took years to get me this bad he reckons,could take years to get me right.Meantime it leaves my immune system a mess and I pick up every virus and infection going,depleting my system even farther and stressing my adrenal glands ever more as they ffight inflammation and infection.It is such a vicious cycle,I am now on maintenance antibiotics to try to keep sinus infections at bay,have had this for 35years and tried everything going to no avail.I,d love to find out if any other sufferers take low dose steroids on a longer term basis and how effective they are.I,m off steroids two days and stuffy ears,sore eyes and aches are back already.My GP is actually really nice and a good listener,she has been very open to suggestions.Can anyone else throw any light on the subject?Thanks in advance
Hi
Can I suggest posting a new post to ask these questions as comments can get missed.
L
x
This is the way that I see it....
Prior to thyroid blood tests being introduced which I believe was in 1973, when you went to the GP with symptoms of tiredness, aching, etc you know what they all are. Then gp's would prescribe thyroid medication and keep increasing the medication until symptoms disappeared. NDT or levothytixine being the medication.
So how many people had ME/CFS/fibromyalgia before this time? ??????
So then the thyroid blood tests were introduced so people would go along to their doctor with hypo symptoms and some would be treated as the blood tests showed that they were hypo but then what were they to do with the people who had normal blood tests???
So instead of coming up with the fact that the blood tests were inaccurate what did they do?
We had thousands of people with these awful symptoms but they believed that they were not hypothyroid because the blood tests said their thyroid was fine!
So in the 80's many of these people were nicknamed with yuppy flu.
Most of us had faith in doctors in the 70's and 80's but now since the Internet we can all speak to each other and can question what we are told.
The latest is fibromyalgia that people leave their GP surgeries with written down on a piece of paper. What they are being told by their GP is the name of their aching body which are SYMPTOMS and not the diagnosis.
So if you have thyroid disease or other autoimmune diseases in your family and you have hypo symptoms and yet blood tests are so called normal then surely you are not going to come away with the CFS or fibromyalgia diagnosis???
The late Dr Skinner found many people were hypo that were misdiagnosed and now we don't have doctors who look at your skin with a magnifying glass and discuss every symptom, even the one where you think you have seen something rushing past you when there is nothing or nobody there.
It's not your GP's fault as this is what they are taught. I am well because I keep well clear of seeing my GP. Why? Because I have a suppressed tsh and feel well but they get so out of shape and would prefer it if my tsh was in the range and then I would spend most of my life in bed!
Aha but then the GP's would say ah it's not your thyroid, you must have ...... You guessed it ME/CFS/fibromyalgia.
Climbing off soap box now to get ready to go out with friends and be back home about 3 and then do some house work, Cook and have the energy to do whatever this evening, usually hitting the sack around 12.30am.
You can get better, you have to find the right thyroid medication and dose
Sue
Sue I think it as as shortsighted to think every case of m.e responds to the right thyroid med as it is to think no cases of m.e are thyroid related. It just isn't always that simple as illustrated above by my boys 12. I am on T3 only, LDN and Hydrocortisone, but for no explicable reason every few days my Blood pressure goes sky high and I have to drop the hc or the t3 to get it down. Iwish it was as simple for me as you state. No one could try harder than me to find the right solution.
I didn't say every case of ME. I have an online friend who has spent the last few years trapped to her bed or sofa. Yes she is hypo and on LDN.
I sympathise, it took me five years to find the right way for me.
Have you tried naturethroid?
Does my head in too...thanks for this.
I was diagnosed with FMS/cfs 15 months before my thyroid labs went slightly out. I begged another GP to take them again and she put me in for t3 and t4 also. My TSH was only mildly elevated 4.8 but my t3 was abnormally low and t4 low in range. By that time I was having overt hypothyroid symptoms on top of the FMS. I knew about John Lowe's work with metabolic rehab soon as I was diagnosed FMS and always wondered if that was really the problem. Symptoms of FMS CFS AND ME range from mild to devastating My friend's daughter has ME and gained mobility again after a year-long intense rehab programme that involved retraining the brain for sleep and gradually stepped up exercise tolerance, and she was hugely D deficient. Interestingly her mum has had her thyroid removed because of autoimmune disease, and her brother has Crohn's disease. A huge FMS group I am in took a poll for thyroid disease a whopping over 50% declared thyroid hormone problems, and many others wondered if they had an undiscovered problem. I know Lowe's work looked at tissue resistance which may or may not be accompanied with autoimmune. I would like to see more research on the links between immune disorders and metabolic disease. Anyway, important news. At least another part of this spectrum is officially recognized. Another thing I don't get is that all my FMS symptoms come up in searches against hypothyroidism and Hashimoto's. Research talks about the triggers for Hashi's ...those same ones come up in fatigue disorders.
Yes it's their default setting as its a damn sight cheaper than the hypo alternative.......much like "it's your age" or "you're pre menopausal". My a**e
For completeness, I have been diagnosed with PoTS- postural (orthostatic) tachycardia syndrome which would also match the description above and for me includes episodes of fainting. It is totally debilitating affecting every aspect of my life. The hospital say it is due to de conditioning of the vascular system post surgery - the veins are too slack to pump blood to brain on standing/ exercising. They are also investigating mast cells (antibodies) which can also affect the vascular and autonomic nervous system. I had thyroidectomy a few years ago - taking combination of thyroxine and T3.
Hi sandywandy1, I was also diagnosed with POTS,a pretty sharp locum GP mentioned it when treating me after collapsing,said it is linked to ME/CFS as well.When I did go to my Endo he suspected it was linked to thyroid problem,RT3 with me.Since going on 20mcg T3 only tablets per day the POTS has improved significantly ,might be worth investigation.I had never heard of POTS before that and I 've been fainting all my life.Endo reckons I,ve been hypo for many years,but bloods tell so little.At this point I know more than my GP does about it,and she's actually a good GP in relative terms.She was amazed at the increase in my low BP and slow heart rate after only a couple of months on T3.They really don't explore many options with you,unless you push hard.Very difficult to deal with.lol
Thanks for the information. I have no thyroid after thyroidectomy. I am already on a mixture of T4 (100)and T3 (30mcg per day). When the PoTS symptoms came on post neck surgery, I was convinced it was thyroid and insisted the GP referred me back to endo who swears blind it is not my thyroid or adrenals. I have increased my T3 dose a little, but no change to POTS systems. I did try T3 only, but endo would not support me continuing.(I haven't tested RT3) I felt a bit better in myself, but started losing hair again and that was before the POTS symptoms. It is all very frustrating - it is like I have lost control of my body. If I get to the bottom of it, I will share with the group. You name it, GP tested for it (apart from RT3!) - standing up certainly exhausts me and makes me feel dreadful and the tests show my heart rate goes through the roof every time I stand, but returns to normal when I sit down or I lay down. Passed out during tilt table test and heart rate went higher the longer I stood up. Test show blood pressure hits my boots every now and then, but no rhyme or reason to it apart from standing makes me ill - is it deconditioning (I certainly experience exercise intolerance), mast cells, thyroid,reverse T3, adrenal malfunction (high cortisol on standing), stress?????? (I am certainly that) - very confused- there does seem to be a fair bit of overlap between all of these conditions. May be once something goes wrong, it all goes wrong - I wish I could turn back time and have my thyroid back. I need a new body and a new brain- If I had any brain left I would try and qualify as an endocrinologist and a neurologist! -too tired to think anymore let alone stand up. I hope my post helps rather than hinders - good luck all x
Dear Myboys12, I have been pondering what you said yesterday about reverse T3 and T3 treatment. I wonder what your lab results were pre and post treatment. I hope this isn't hogging your post teenarocks. I just wonder what FT3 and RT3 looks like in in someone with chronic fatigue through hypo. (Knowing the ranges of t3 for other diagnosis of fatigue would also b helpful) My FT3 has sat at 5.1 or 5.2 in a range up to 7.8, when it was below 5 I felt hypo, but felt ok ish over 5 until my op. So FT3 mid range, but POTS and chronic fatigue. My pulse is in the 70s when I sit, but anything from 120 to 170 (occasionally higher) when I stand. Blood pressure normal with sudden drops. Still confused, but it would certainly be useful to know more. Many thanks Sandy x
Hi Sandy,my results before treatment were as follows
T3 Total..1.2...Range-1.3to 3.1
FT3 3.7..Range--3.6to 6.4
Reverse T3 14.60...Range..9 to 35.
Ratio FT3/RT3--2.4
According to my Endo the ratio is the biggest indication of problem....Ratio should be somewhere between 20 and 30.He was stunned I was even standing.My TSH was 0.63...Range 0.35 to 4.94.Free T4 10.6....range 9.0 to 19.1.My T4 total was 67.0....range 66 to 181.So technically within range,barely,except on total T3.So according to doctors not hypo. Despite having all the symptoms for years.He said because all levels so low it indicates secondary hypothyroidism...related back to
.Cortisol at 11a.m was 230.
9a.m range is 171-536.Meant to be at it's highest early in day,gradually decreasing as day goes on and midnight below 140.My cortisol wasn't measured throughout day...one blood test.DHEA was 6.2....range 3.4 to 34.7.He said low morning cortisol along with low DHEA indication of quite bad adrenal exhaustion,which likely contributed to hypothyroidism.Have lived on cortisol all my life,LITERALLY,very traumatized in first 18 years of life,spent next 30 dealing with that.Now my head is good but my body is paying a hefty price.Haven't been retested,would have to spend another €500 to have bloods sent to France.On T3 almost a year,have only had bad POTS episodes about half dozen times since,instead of every other day,could not walk upstairs without taking a break and being breathless at the top...15 steps!On DHEA since September,not sure how long I'm supposed to be on it.Have been reading that low dose cortisol helps ME without suppressing adrenal glands function.After the joy of two pain free week on high dose,wondering if my GP might be agreeable to giving it a go,evidently 5 to 10 mg daily,max.Going to talk to her about it.Endo said my adrenal glands in bad way,,they cannot take much more stress on them.Hope these results help you in some way
Very helpful and lots of food for thought. I did 24 hour urine cortisol on a day I rested - normal. Had v high early morning cortisol blood test (over double the range)I did the adrenal saliva test- my results were 'rare' adrenal fatigue at the same time as severe long term stressors. My early morning cortisol was normal then high, high, high and DHEA low. Pre PoTs I was thinking of taking adrenal supplements. Now they want me to take fludrocortisone to increase blood volume. So difficult to know the best way forward, but think it is worth getting my RT3 tested. Thanks again. Sandy
Ive been diagnosed with hypoT since 2008 and am treated with T4 only to little avail as I still suffer with fatigue, constipation brain fog breathlessness frequent urination and intermittent swelling of feet and fingers. In recent years I have had to deal with personal traumas and all these symptoms have increased to the point where I am considering seeking a dx of CFS. The reason for this is that CFS is taken more seriously than hypoT. I have reached the final point with my treatment for hypoT as weather I continue to have symptoms or not my bloods are in range and thats it as far as the NHS is concerned. I do not feel brave enough to self medicate or even change to NDT, I am scared I will make my symptoms even worse. The main thing holding me up at the moment is that where I live I actually have to travel to another town to gain the dx of CFS. I have briefly mentioned it to my GP but was dismissed. It doesn't make sense to me that it is so hard to get a CFS dx but once you have there are more treatments available than there is for HypoT. I too am confused by the controversy surrounding HypoT and don't have the energy to pursue the complicated options that are available if you take your health into your own hands. I am already taking extra T4 despite being in range and always have a print out done when I get bloods done. I recently had a very bad swelling in one foot and the doc was looking at the possibility that I had gout rather than putting it down to hypoT. I get sick of it all and feel like a pin cushion having tests for this and that all the time. Its like a complete waste of time even going to the doc about it.
helbell• in reply to
HypoT,
I would encourage you to put out a separate post for your symptoms and concerns. I'd bet you are under medicated. There are some very knowledgeable people here that will zoom in to support you. You can't go on like that. No wonder you are thinking you have CFS. Bear in mind our bodies have to make do with the thyroid hormone we put into it as apposed to our own thyroid. creating the hormones when we need them. That said, I still reckon you are under medicated anyway. So...under trying times we will fall and need to rest if poss. Fatigue, constipation brain fog breathlessness frequent urination are classic hypo.
The reason it may not be as simple as saying ME/CFS is hypothyroidism is probably because in the vast number of cases the thyroid issues are auto-immune in origin, ie Hashimotos. So that means they are a symptom, not a disease entity. And are part of a far wider picture. There may well be other auto-immune issues going on, as the process can affect other systems/organs. Until you get to thebottom of what is causing the underlying inflammation that fuels that process (diet, environment etc), taking thyroid meds will never be the pure and smple answer.
It is utterly scandalous that most ME/CFS patients are never tested for their T3 or their thyroid antibodies. That alone tells you something. That would be a huge step forward in helping the newly 'diagnosed' (only they're not, an exclusion list can never equate to a 'diagnosis'). It won't necessarily catch all cases, as there can be other thyroid issues that might be going on, but it would be a start. And lowering the NHS TSH range to match other modern health care systems in other countries. I've had a TSH of 3.9 ish for a long time, then 4.9, and it is infuriating knowing that that would be treated in places like Sweden, Belgium, Germany etc, but here it means my thyroid "is fine"...
I agree completely ! On other sites people state their thyroid is fine. When questioned further you eventually learn that they only had the TSH tested Also it is well known that any blood test results are only as good as the person interpreting them !!
When someone with Fibro/ME/CFS can show a full set of thyroid test results including the antibodies/vitamins/minerals and all are OPTIMAL - only then would someone have to consider something else.
Am always horrified when I read how many pain relieving drugs some people are on - surely that makes for toxicity in the body and creating more pain....
Exactly! CFS - Chronic Fatigue Syndrome. Sydrome = a bunch of symptoms. Symptoms are caused by something. How many doctors bother to look, prefering to take the easy way out by labling someone as CFS/ME or Fibro. They are not diseases, they are syndromes.
So, they could be hypo symptoms - god knows there are enough of them - or one of the other imbalances caused by hypo, such as adrenal fatigue, with all the hormone deficiencies that that creates. And, don't forget the nutritional deficiencies caused by being hypo, which create a long list of symptoms of their own - how many doctors test vitamins and minerals?
As far as I can see, they are all looking in the wrong direction. They prefer to spend vast amounts of money on blood tests that aren't very helpful, rather than test the FT3 - because it's too expensive! Does that make economic sense? No. None of it does. Oh, if I were Minister for Health...
Then I wouldn't have had to write you a nasty letter gg. It didn't do any good though. Wish they'd stop spoiling the ship for a happorth of tar and just be honest and do the FT3!
lol No, you wouldn't have had to, because I would have sorted it all! lol It's all totally illogical but... you know why.
I have ME and like myboys12 recently had to have a 10 day course of steroids for allergies/sensitivities. Towards the end of the course and for several weeks after I also felt physically better, less pain, more energy, normal sleep cycle. Unfortunately it did not last long! I am due to see private endocrinologist at weekend.Upon asking my GP started me on levothyroxine 25mg when TSH 5.87 Nov, TSH reduced to 4.69 Jan (have TPO AB) but he has refused to increase. I am left wondering what was the point in even starting treatment.
I have just seen your reply and you have received appalling treatment. Please consider seeing a different doctor if you can. You clearly have hypothyroidism.
Thyroid treatment may not get rid of all your symptoms. If the steroids made you feel better, there is a very good chance your adrenals are also compromised. I personally believe this is another possible cause of ME and fibromyalgia symptoms in some people. Unfortunately the tests for adrenals only result in a diagnosis for the extremes; Addisons and Cushing's disease.
This would possibly be better discussed on a separate post if you feel up to it (apologies if you have already done so) but I didn't want you to think you were alone by not responding.
There are some good doctors out there. I saw mine today and he's brilliant. He's really lovely.
I wish you all the best and hope you get some proper treatment soon.
Carolyn x
Hi Londinium!
I hadn't heard about vit D deficiency causing such severe symptoms- it's certainly worth looking into! Has the diagnosis/treatment made a big difference to you?
So sorry to hear about your poor mum 
Nicky xxxx
NickyBee....
thefatemperor.com/blog/2014...
exeter.ac.uk/news/featuredn...
vitamindcouncil.org and click onto health Conditions at the top of the page
The first link is 90 minutes long and worth every minute !
The second is about Low D and Alzheimers - recent research !
Thanks Londinium & Marz. Although I'm not convinced vit D deficiency is the root cause of Tim's M.E. ( which was of sudden & severe onset after 'flu) I certainly can see how- because he never sees proper sunlight- his vit D may be seriously low.....xxx
Just watching the video I posted enables you to modify your focus on illness - I thought it was great to watch. Others commented too when I posted it earlier - that the time flew. Not expensive to buy VitD capsules...
I was not suggesting D is the root cause for any condition - but it is very involved in many. I should know I have two ! Had Ileo-caecal TB and Crohns - not forgetting the Hashimotos !
I kinda lost faith in the NHS the first time I was diagnosed with CFS, offered a scrip for anti-depressants and given a nice explanatory leaflet that said there was no diagnostic test, no treatment or cure and an infinite variety of symptoms! At the time, my vitamin D was 10 and my ferritin was 16!
Just lazy doctoring if you ask me!
I was dancing until midnight on Saturday, walked 5 miles on Sunday, and spent an hour tidying up the garden, went out on Monday night and will be out again tomorrow and Friday. In between I have been working full time!
I was diagnosed in 2004 with M.E. or C.F.S. went onto my medical records and my TSH levels were way out so spoke to doc and now can no longer access these details they say on a different system and not available to view? The doctor also told me that is not relevant with my condition it was a seperate thing????? I believe they are just no willing to help people with the Hypothyroidism I have been informed is my extra problem a couple of years ago and specialist was not the person who tried to help it was my own GP, I was just above the guidelines for being in range (not a realistic margin in my opinion). I no longer trust any medical professional as I feel they are all just doing what the government instruct them to do, don't do any more than you need to, make them pay or suffer if they cannot access money to do so. I see so many people on here struggling every day with nobody to turn to? I would like to see how they would cope with this disabling condition every day, I am sure they would get themselves treated privately and probably at the tax payers expense.
Shaz, I sympathize with you. I don't understand what we've ever done to deserve this treatment. How does it hurt them to treat us properly? Didn't they take an oath to do no harm? And with our speaking out I truly believe they would gladly lock us all up in an insane asylum and throw away the key. They think we are the ones who are ignorant when they are the ones with the problem.
I so agree teen rocks - not just undiagnosed hypo but also B12 deficiency: a silent epidemic - both autoimmune and interlinked.
I am on a mission to tell our family's story in the hope that it will make others aware of how CFE/ME (and dementia) can be misdiagnosed and lead to serious consequences. It's difficult to know where to start, so this is the short version!
My sister had been diagnosed with ME/CFS for 30 years and, after a serious crisis, her GP ruled out Altzeimer's and settled on a diagnosis of ME and dementia. No case history had been taken even though we'd pointed out that there had been a huge decline following dental injections, (nitrous oxide in anaesthetic and dental injections seriously inactivates B12, if you are already deficient, as do many other medications, including antacids, PPIs, etc.) I began to research PA and B12 deficiency extensively but was unable to convince the surgery to consider B12 deficiency even though she by then showed many of the neurological symptoms, which are irreversible if not treated urgently.
After months of frustration, discussions and delay, the surgery finally agreed to trial B12 injections. Huge improvements followed, which enabled my sister to physically have a life she had not had for years. Memory is still poor and may not ever be fully reversed owing to the GP's lack of urgency, but we are still hoping that it will come back with time and sufficient vitamin B12, which she still struggles to obtain from the surgery!
I forgot to mention that we both have Hashimoto's.
Thanks for your comments, Polaris. I, too, have Hashimoto's and was undermedicated for 22 years. During that time I thought I was mentally ill and demented. In the last year I've been educated by this forum, a female Chinese acupuncturist and a chiropractor and have learned that all of my symptoms were coming from my undertreated hypothyroid. I've since switched to NDT from T4 only and increased the dose to a point of relief of symptoms (against doctor's advice I might add). Fatigue, brain fog, depression, memory loss have all abated. Unfortunately I have become an angry, cynical woman and no longer trust anyone. I'm fed up with being mistreated, lied to and ignored. I hope I can overcome these feelings and once again feel the joy of living instead of being annoyed with almost everything.
I'm so sorry teenarocks.....it's so sad at how many lives, marriages, and careers have been devasted by these under diagnosed and under treated
diseases. I can't imagine how you must feel.
I was until now willing to give GPs the benefit of the doubt but, since GP told my sister that her numbness and tingling were nothing to do with B12 def. I am like a Rottweiler let loose and will keep on finding ways of spreading information. There is, I believe, something sinister about GPs unwillingness to accept the latest research and guidelines, and their arrogance is causing untold misery, social chaos and even unnecessary death. The UK B12 deficiency expert, Dr Chandy, was banned last year from giving B12 injections just before it was announced GPs were to be given £55 for each new dementia patient diagnosed!
I know how you feel about the anger....I have to talk to myself, try to transfer it into action and think of new ways to spread as much information as possible to warn others.
Similar story in my house with B12 problem.Our younger son was diagnosed with an anxiety problem when he was 16,GP put him on Lexapro antidepressant with our permission,as my beloved brother died by suicide 12 years ago at the age of 22.Our son improved.Then GP did routine bloods about a year later,saw something odd,repeated bloods,mostly because she grew up with me and looks out for us.Turns out our son has pernicious anaemia,ie cannot absorb B12 at all,inherited from his paternal grandmother,when I researched it I discovered that lack of B12 causes problems with mood and anxiety.He was started on B12 injections for 8 weeks,then 1every 3 months for life.Big improvement in son,off to college,getting injection every 3 months in college medical centre.But I felt he still wasn't great for a 19 year old.Requested college nurse to redo B12 levels,and give him the result.She said that he was fine,in range,at 330.Up from 180.Cut off point for pernicious anaemia is 200.Optimum is closer to 900.I wasn't impressed with 330 for someone on injections.Rang my GP and asked what she would expect his levels to be,answer..up near 1000!!She was amazed he was still so low,another course.Then I asked her to give them to him every month as his absorption of B12 is very poor obviously.She agreed,but mostly as a personal favour,most doctors would refuse.My son is like a new man,he'll be 21 in two weeks time,has energy,looks good and down to lowest dose of Lexapro.Long story but just pointing out that if we don't educate ourselves on our conditions and challenge results we'll be left to slip through the cracks.My son was lucky to be diagnosed so young before any neurological damage could be done,and he has now been educated by me on the possibilities of him being more likely to get another autoimmune condition because he has one already.The last couple of years have been massive eye openers for me on the inadequacies of our doctors,it's actually quite frightening.Only bonus of having ME is that during the time when I can do nothing physical I read about how I can be my own best doctor.
Have you tried turning off the wifi and your mobile phone? At least at nights. Electromagnetic pulsed radiation does awful things to rats. Cable is infinitely safer and more secure.
justproveit.net for the research. We're starting to hear about this in the press, in spite of the advertising big telecom buys.
Hi All,
What really bugs me is that sufferers have to try and find out and work out so much themselves. Uk nhs pays medical professionals massive salaries to do this. They so often don't help and worse still won't listen or act on sufferers own knowledge.
Whilst self investigating (when feeling able) we are dealing with being poorly too. Just not right.
Eek..sorry m just a little rant xx
I have M.E./CFS and from the UK. I have absolutely nothing whatsoever wrong with my thyroid.
Carol
I have both chronic fatigue syndrome & hypothyroidism.
Hi ,I was diagnosis in 2006 with CFS/me/fibro after suffering with what the doc said was parathyroid illness,,my parathyroid glands went hyper I lost about 2 stone in six wks and was seriously I'll but my doc would not admit me into hospital eventhough my mother insisted I was not getting the care I needed at home..it took about 12/13 wks for me to get the strength to get out of bed,,,,I was urinating in to a bucket as I could not get out of bed
Rimmer''hi on the subject of me/CFS/fibro I was diagnosed with this after I was diagnosed with parathyroid illness.my parathyroid glands went hyper I was I'll for 12/13 wks and lost 2 stone..my doc would not admit me into hospital even though my mum insisted I was not being treated well at home.after about 12 wks I managed to get out of bed,they had been taking blood from me and it kept coming bk as hyper,eventually I got a normal result,,and that was that doc left me,,I could not return to my normal day to day duties I had a young son and my poor mother who herself was I'll had to look after him,,as my husband and I were separated,,I tried in vain to get bk to normality,,but I was so exhausted I just wanted to sleep,I shook,and sweated all the time,,I went bk to the docs but nothing was being done to help me,,,,I had to change docs and was eventually diagnosed with me/CFS/fibro,,I have fought since 2006 with this illness then two years ago my symptoms worsened,,I was diagnosed with an overactive thyroid that's happened twice now but docs wait for six wks then re-test the blood until they get what they call normal levels,,what's normal!!! I am having serious problems with server sweating/shaking/ tremors/total fatique and feel very unwell I have no life,,and now because my thyroid levels are normal',,my doc has said I'm menopausal,, I think its a combo of both,,I have never been given any medication for overactive thyroid illness even though I went overactive three times!!! I am now fighting with the doc to take another look at my thyroid,,,,,ho also the endocrinology doc I saw said I had thiyrositis,, I was attacking my thyroid,,thanks if you read this rather long reply but I do think docs need to listern to the paicents
Rimmer, I'm so sorry you are going through this. It is so unnecessary. I still don't understand the lack of good treatment for thyroid disease. It is not rocket science. It has to start with their training. The schools need to better equip our doctors to treat thyroid issues. They really don't have a clue what to do. Unfortunately the best things you can do is educate yourself. Get as much testing done as you can even if you have to go private. Find out your hormone levels and all your nutritional deficiencies as well. You may even have to resort to treating yourself. If that's what it takes to get well, that's what we have to do. It's a travesty. I pray you will find a way with or without their help to improve your situation. It has taken me two years but I am finally functioning on an acceptable level and have a better understanding of my needs. May God guide you and bless you.
Its myalgic encephamyolitis they now recognize., not legalized! Drs and other health professionals have to take it seriously. The name wasn't changed. Especially not to something like that.
Not what you're looking for?
You may also like...
Chronic Fatigue Syndrome
Hi everyone,
Has anyone with thyroid issues been diagnosed with Chronic Fatigue Syndrome? My...
Chronic fatigue syndrome
Hi there
Is anyone aware of a connection between hypo thyroidism and Chronic Fatigue syndrome
I've...
chronic fatigue syndrome
has anyone else been fobbed off with having chronic fatigue syndrome, and if so what have you done...
Chronic fatigue
Hi my sister has had chronic fatigue or post viral fatigue for 12 weeks now and is not getting any...
Hashis diagnosis / Chronic Fatigue Syndrome / Vit D
Hi everyone,
Went to the Doctors today for my first set of blood results following diagnosis of an...
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: the biology of a neglected disease
Chronic fatigue
Adrenal Fatigue Syndrome
Do you think Chronic Fatigue Syndrome exists?
