If you are hypothyroid, do you have any of thes... - Thyroid UK
If you are hypothyroid, do you have any of these other conditions?
However, my very personal view is that there is no such thing as ME/CFS. It's an excuse for doctors not to have to do enough investigation to make a proper diagnosis.
Exactly the same happened to me I was diagnosed with Cfs/me I am hypothyroid
Interesting, if you read more about M.E. (The Action For M.E. site is a good start), it has actually been found to be an immune deficiency illness with a pathology that suggests a virus. You may find it useful to learn more at:
actionforme.org.uk/get-info...
I have numerous conditions, including M.E. and Hypothyroidism, I have seen the top M.E. expert in Europe and believe me, most medical professionals now believe in this debilitataing and chronic illness.
As someone who has been diagnosed with ME for more than 36 years I can assure everyone on here that ME does exist and is a neurological immune deficiency disease, which for me began with a virus.
I do agree that poor diagnosis can lead to people being labelled CFS when they are actually hypothyroid but that does not mean that ME/CFS does not exist.
I do not show blood markers for Rheumatoid arthritis, but I have this as well as hypothyroid, hypoadrenal, pernicious anaemia, ME, coeliac, crohns, osteoarthritis, low D3, postural hypotension fibromyalgia.
Anyone who has a long term autoimmune disease has a higher probability of developing other autoimmune conditions.
I agree with happychick and amaryr, I don't think it helps anyone if we start saying that ME/CFS doesn't exist. We need to exercise compassion and kindness to everyone suffering from these terrible illnesses. The problem is not the patients themselves, rather that so often patients are not treated properly by the medical profession who seem unable to distinguish between various diseases when making any diagnosis.
I was diagnosed with ME (by Dr Behan) in 1981, while in hospital with a provisional MS diagnosis. I was told it was due to the Epstein Barr Virus. I took part in a research project on single-fibre muscle performance which showed that ME patients in the sample had impairment of the muscles compared with non-ME individuals. I have never personally doubted the reality of ME as a condition, but encountered problems convincing my employers when I needed sick leave. I recollect that my then GP frequently tested me for hypothyroidism, but nothing turned up in the tests for years, until I changed GP and collapsed with obvious symptoms ( puffy face, pulse of 48, extreme fatigue, constantly sub-normal temperature, brain-fog). Perhaps the thyroid tests in the 1980s and '90s were insufficiently refined.
You mention other ailments you have developed which may be connected to your thyroid problem. I have osteoarthritis and now possibly RA ( not been tested for markers recently). For years I suffered from Polycystic Breast Disease, clocking up over 300 cysts, and I recently spotted a research paper linking this with hypothyroidism. They stopped after the menopause. I have never met anyone else with the disease. I also attribute my high cholesterol - 6.9 when first tested - to untreated thyroid problems.
It can't be easy for GPs to disentangle the complexities of disorders like ME and thyroid problems but there seems to be a greater interest in them these days, which gives us hope of better treatments.
Hi sorry and you are entitled to your view, but there is such a thing as CFS I suffer with it and believe me it is not funny. Some people say that CFS suffers are just lazy well perhaps some are but I cant see any fun in doing that. I have worked all my life from being 16 to 58. So believe me I am not lazy. Some days I literally drag myself round in an attempt to live a life. I pray to God it would go away along with my other complaints.
Please have a rethink. Perhaps some doctors may do as you suggest but my question is why would anyone want this disease.
Take care.
Bye for now Love Ax
I didn't mean to offend anyone - and I'm very pleased that so many people feel that CFS/ME is the correct diagnosis and is getting them appropriate help and treatment. I can only tell you that in 37 years ME has been used as an excuse to shout at me, ridicule me, and ignore me. Not once has it led to appropriate testing or treatment.
I realise now just how badly I have been treated if, for others, it has been a helpful diagnosis.
Hi what can I say. I dont really know not being a doctor but I understand that you can have a blood test which tells you if you have ME. I have fibro which causes CFS I am told this is the same as ME but I am not convinced because I think ME is more serious or is it the same. I have read your other message and I feel very sorry that you have suffered. I know it is hard when you have to prove you are ill and not putting it on and being lazy. I know what you mean. I hope this makes some sense. I want to really tell you how to make things better but I cant. Please take heart we all care.
Hope to hear from you again.
Take care
Bye for now Love Axx
I can't see anyway to edit my previous comment.
Can someone tell me how they were diagnosed with ME or CFS please. I don't know what tests I should ask for. I was recently referred to our local ME specialist. He asked me almost no questions, did no examination and ordered no tests. He then wrote to my GP saying I had ME. His colleague later asked me to put in a written complaint as his letter was unsigned and, she said, all his letters were the same.
Annabell, hippychick et al,I agree with you 100%. I feel rather guilty when I mention ME/CFS on the forum, as so many people seem to think it doesn't exist and that thyroid sufferers are being 'fobbed off' with this diagnosis. I don't think it's anything to be ashamed of - I thought, hoped, all that would stop when it was finally recognised as an illness by the WHO, and was rather surprised at the degree of disbelief in its existence on this forum of all places. Although of course, if you are undiagnosed HypoT but being told you have ME/CS I suppose you would feel this way.
I can date mine from a 'flu-like virus' I had in 1972 - the difference in my health was like night and day, so I can be sure of this. I didn't know what it was at the time and was labelled Anorexic, which was not right. It wasn't until 2005 that a GP said he thought that I didn't have Anorexia but ME/CFS, which I had worked out for myself years before, but naturally nobody listened.
Believe me, if you have been labelled incorrectly and patronised and laughed at and generally treated like a moron as 'Anorexic' for 30 years, the 'ME/CFS' is a preferable label, if it has to be one. I was not diagnosed as HypoT until 2000 - I did not have any symptoms other than fatigue, which I had from the ME/CFS anyway. I suppose there is a chance that the orginal virus might have affected my thyroid, but I would have expected other syptoms to arise in 8 years if it had. I certainly have plenty now.
When I relapse, as during the past year and a half (usually due to prior extended periods of over stretching myself physically or emotionally), I don't really know if it's the CFS or the thyroid. I suspect a relapse of the ME/CFS as I have experienced this before, and very unpleasant and long drawn out it is too. One of the symptoms for me is that my system seems to reject everything as if it were poison, including many foods and now it seems T4 in any form. This is the first relapse I have had since being diagnosed HypoT and it is worse than ME/CFS on it's own, which is bad enough. Each seems to make the other worse and more difficult to treat.
As I see there are other people here who DO believe in the existence of ME/CFS, I am only too pleased ad relieved to be able to 'come out' as an ME/CFS sufferer as well as HypoT!
I have been told I have signs of Arthritis but nothing more than that.
Agree with rosetrees! Same applies to IBS.
Athough diagnosed with CFS, I refuse to acknowledge this diagnosis and agree with Rosetrees. I also believe that B12, D3 and other deficiencies can cause chronic fatigue symptoms. Thanks to those who have posted the B12 videos, they were very enlightening and informative.
I have Addison's disease, which often goes with hypothyroidism, and doc has just said I am likely to get pernicious anaemia (mum had it). Also IBS. Also have a rare blood disorder - missing factor 5,
I have one too Jean, Hagermans syndrome, not sure which factor it is though. Maybe there should be a link to add these other immune problems onto the list. X
I have polyglandular syndrome type 2 (Addison's + Hashimoto's), which puts me at risk for pernicious anaemia, and other delightful stuff. Also parahaemophilia, and my pituitary gland is also shot. Hagerman's syndrome sounds worse, though...poor you. I suppose there is no link because Addison's, Shmidt syndrome (the type 2) and Hagermans are rare.
I seemto have a lot of the symptoms of addisons yet it then sways towards cushings, very confused, also hae underactive thyroid but not sure which came first.
I have vasculitis (MPA). No way to add my vote but have often wondered if there may be a link.
I have depression and manic tendancies but none of the other things although i also have IBS and Carpal tunnel in both hands.
Endo said CFS but I refuse to accept it as my levels weren't optimal for me. Investigated for RA and fibromyalgia but given all clear. I believe most of these conditions are somehow related to the thyroid and it's suboptimal treatment from gps and endos.
K x
I have IBS , carpal tunnel in both hands and poly cystic ovaries, which I was told after paying a lot of money to privately see a thyroid specialist that were conditions often found in patients with thyroid problems!
I did have carpal tunnel but it has now gone. This is a link
I have/had Crohns - another auto-immune illness to go with the Hashimotos. Lots of surgery over the years removing affected bits and pieces......everything working well now.
To get a good overall picture it would be useful to have a choice of ticking a box for "none of these".
You can only have 8 choices. 
I am amazed that so many of us are suffering with fibromyalgia
I personally think it is due to being undertreated, or reliance on the TSH for diagnosis.
I asked my endo where the line is between fibromyalgia nad hypothyroidism - he said there is a huge overlap between fibro, hypothyriodism and vitamin D deficiency. >y fibro symptoms have improved hugely since t3/t4 treatment.
Me too; I've just printed the result out to show my doctor.
which is often misdiagnosed when they should said addisons disease.
I need a box for none of these. Not that I don't have other associated probs.
You can only have 8 choices.
I don't have another condition at the moment and I also think there should have been a box you can tick for none of the above - simply to see if there are a significant number of us who are only suffering with the one condition (might be interesting to see if it's only those of us who are newly diagnosed) but who might eventually develop others over time.
I feel to get a true picture, you should have a none of these or it will look as if everyone has other issues. Therefore - I couldn't take part in this vote... I now feel neglected 
You can only have 8 choices.
My son has M.E./C.F.S. however, he is NOT hypothyroid. I think that anyone who says there is no such thing as M.E./C.F.S. is doing a great dis-service to all the many people out there that do suffer from this terrible condition on a daily basis!! I am hypothyroid, have fibromyalgia, I.B.S. and depression.
I've had ME for 37 years. I think it's a myth. To this day, despite worldwide research and an acceptance that ME is real, no-one anywhere has been able to say what it is. Saying it exists and setting up ME services and clinics is what, in my view, does a dis-service to sufferers. We are ignored, ridiculed, dismissed and pushed around. We aren't treated, we aren't supported. ME has now become what I call "the lazy doctor's diagnosis of default". When I was first ill no-one had heard of it. I was told there was nothing wrong with me. Now people are told they have ME. They are still not offered appropriate treatment or support - because ME is used as an excuse by doctors to not have to do any further research or treatment.
Who knows what would happen if all people diagnosed with ME are treated systematically for thyroid/adrenal/hormonal/pituitary symptoms. Treated on symptoms not test results.
In 37 years I have had endless blood tests. All testing for the same standard set of things, all producing the same standard set of results. Not once has anyone, anywhere, ever taken enough interest to do any other tests. I know what a terrible condition it is. It's ruined my entire life. But I also know that saying someone has ME/CFS is simply an excuse to ignore them. It does nothing to treat them or provide a proper diagnosis.
Sorry - that turned into an unintentional rant.
I hear ya Rosetrees, how sad when you say that it has ruined your entire life so sad!
It's as obvious as it would be to a blind man on a galloping horse for goodness sake!!!!! ever since starting the TSH blood test people started having symptoms but their thyroid must be fine because the blood test says so.
Prior to the TSH blood test if you went along to your GP with symptoms - oh it must be your thyroid here are some tablets.
Doctors like Dr Chris Steele say that they give the patient with normal blood test results a trial of levothyroxine - it cannot possibly do any harm so why don't doctors do this? No they stay side by side in the field with the other sheep and say no, it must be ME/CFS/Fibromyalgia.
I also feel for the people who have serious ME, I know of someone who's life is ruined. She is hypo too but has terrible ME, she is in bed most of the time for months sometimes. It must be hard for them when they hear us saying that it is a made up illness, it is just that so many are misdiagnosed with it.
When doctors knew clinical symptoms, maybe your son would have been treated as having a thyroid gland disfunction.
This is how a virologist came to be helping people so diagnosed.
worldthyroidregister.com/Go...
Yes there are people out there with debilitating ME. However, there are many people mis-diagnosed with ME/CFS/Fibromyalgia. Are you absolutely 100% certain that you son is not hypothyroid? and I don't mean his blood test results, many people can be hypothyroid with normal blood test results. Has he had his thyroid antibodies tested?
We all know that being given the diagnosis of ME/CFS/Fibromyalgia means that you have the label stuck on your notes and that is it. No free prescriptions, no further investigations etc etc ..... don't give up, if your son has classic hypo symptoms push for further testing.
I AM hypothyroid, my son is NOT.
I can't make this any clearer. He has been FULLY tested.
I feel like I am being accused of something here, just because people are being mis-diagnosed does not mean that ALL people with M.E/C.F.S. have been mis-diagnosed.
I am all for people standing up for them selves and fighting "the system" just to get the right diagnosis and treatment, believe me I had to fight very hard to get my son fully tested, it took nearly 2 years, I self diagnosed myself and asked for the right blood tests. like I said earlier, I am lucky to have a Dr who is open to patients, listens to their symptoms and doesn't just treat the blood test results.
I haven't "given up" and I resent the implication made by suggesting I may have!!
I can't answer for others but I don't think anyone is accusing you, more ranting about lazy dr's.
I have a friend who, like you and others, has been properly diagnosed with me/cfs. It's an awful debilitating condition and you have my sympathies.
I have met many people on different forums with similar conditions to mine and they report that their gp/consultant doesn't listen to new symptoms or worries. Simply dismissing them, for example, "oh that's just your arthritis" Probably if a big toe fell off, they'd get the same response!
It is very frustrating not to be listened to.
The written word is a cold medium and mis-understandings occur.
We all have one thing in common on here. Thyroid problems affecting our heath which affects us in many ways - physically; mentally; emotionally and socially.
therefore when people come on here and read another's personal opinion about their own condition, it feels like they, and the suffering they endure, are being attacked or dismissed, and not being supported, understood, or respected - the aims of forums like this.
but we also do need this forum to feel free to rant about how we feel, how we are treated, and need to feel listened to, whilst respecting others feelings.
I hope that rosetree and others who feel mis-diagnosed find r's who will listen and find the right treatment. I found it frightening when I ad all these symptoms and no answers.
I also was pleased to read recently that any main city hospitals are moving towards a " person centred multi-clinic approach" where all clinics share info & treatment for a patient. this would end having the same tests for every clinic plus one or two specialised ones, now they can ask for ones outside their remit and refer patents onto another clinic without long delays.
gentle hugs to all (( 
))
sandra.
Also Hughes Syndrome (Antiphospholipid Syndrome), and Psoriatic Arthropathy
A very typical trio of disease: Hughes Syndrome, Sjogrens, and thyroid issues Mary F
Also a vote for none of these.
Don't think the responses will be that useful without that, even though I appreciate there was a limit on the number of categories that there could be.
The comments will be used also.
I agree with happychick. The problem is that the symptoms of ME/CFS are so varied and may be related to a number of other disorders/diseases. However, if a good, trusted and painstaking GP and/or specialists have eliminated these, then a diagnosis of ME/CFS can be relied upon. I suffered from ME twenty years ago. I was certainly not Hypothyroid then. My ME gradually got better. Two years ago I became very ill while undergoing treatment for ovarian tumours - some of the symptoms were put down to side-effects of the treatment, but some persisted long after treatment stopped. A full blood work-up showed severe hypothyroidism. I can only say that while many of the symptoms were similar during ME, the treatment I was receiving, and now, with hypothyroidism, I can distinguish which is which. But please, don't deny ME - it's a horrible and debilitating condition, and leaves sufferers feeling extremely ill while having to cope with a very unfair 'malingerer' name. Be kind and exercise empathy.
Like boing, I need a box for 'None of the above'...
The comments will be used also.
My son has had just about every test going, blood tests, cameras where the sun doesn't shine! x-rays, scans, our Dr has been fantastic for the past 4 years, she has left no stone unturned and supported us through it all. I would not call her lazy!! I agree that some Dr's do put a label on patients, it makes it easy for them, they can say you will learn to live with it, pace yourself etc, etc BUT I do believe this is a real condition, neglected by medicine as it is not as glamorous or headline hitting as some illnesses eg cancer. The drug companies are interested in profit first, which is probably why we are given synthetic thyroid instead of pig thyroid as it is more profitable! Until the scientific community investigate this , and many other illnesses, there are going to be many, many people suffering, please do not deny these people en-masse just because you have had a negative experience.
I totally agree with you happychick. I am astounded that people, some of whom are suffering themselves in different ways, are so judgemental when it comes to ME/CFS. There is also now a wide acceptance in the medical field that these disorders exist, though it can take a long time to get a diagnosis as so much else has to be eliminated along the way. I hope your son recovers well. Lots of people do - I am one of them. I wish you well.
None of the above fortunately but I do have another one for your list Louise - endometriosis, I have been told it's autoimmune like my hashimotos and now know that it developed at the same time as the hashimotos and was not the IBS originally diagnosed!
Sorry have not read the full blog - but wanted to comment on the poll in general. Think there should have been an option to tick no/nothing, for those who, to their knowledge,have any other condition. You wont know how many people have a 'simple' hypothyroid diagnosis, without complicating secondary conditions. If ten people reply that they have various other diagnosis, the situation would have a different hue if you knew another 100 had no secondary conditions. I hope I have made myself clear!
Oops - just noticed at least 1 other person has made this point!
As replied above - there were only 8 options, the comments will also be used.
I have never been diagnosed with any of the above but was investigated for rheumatoid arthritis and lupus due to having just about all the symptoms of both. Blood tests negative although that doesn't mean I don't have one or both, apparently. No diagnosis though and symptoms have improved greatly since treating vit D, B12 deficiencies and switching to NDT.
Also told the reason I was so tired was probably chronic fatigue syndrome but that it's "not a real illness". Contradictory or what?
It's a shame there isn't room for more options on the poll. Mental illness would be a good one. It seems quite a few people with thyroid disease have been diagnosed with a mental illness of some sort or other. Perhaps that could be a poll in itself one day
Carolyn x
I do not have any other diagnosed condition. Merely some symptoms which sometimes come back a bit.
I was first diagnosed with chronic fatigue but it turned out to be under active thyroid and if it wasn't for Dr Skinner I would still be suffering today. I have now been diagnosed with Morton neuroma which is inflammation in the feet. Also border line diabetic.
I would add my name to the poll but I'm waiting to see a rheumatologist for my aching arms, shoulders, wrists and hands. I am dreading a diagnosis of fibromyalgia, which, from what I've read here, is as good as saying "We don't know what's wrong with you so stop bothering us....." I'm almost hoping something like arthritis comes up in a blood test. Then at least I'll know.
None of the above (as far as I know) but probably have IBS and eczema
I've not been diagnosed with anything (except a thyroid nodule) so haven't voted.
- but GP 'suggested' CFS/ME after my Partial Thyroid op which I suggested was a co-incidence - yes I was still tired etc. then she said, well have this leaflet and see if your symptoms fit- it's not a bad diagnosis to have! I was not impressed!)
Since then I have found out that CFS can, sometimes, just be low thyroid function (despite bloods 'within normal range') and the condition was only 'named' after the advent of the TSH blood test, another co-incidence in my thinking.
I should say I in no way detract from those suffering CFS/ME symptoms, they can be are totally debilitating (I have a friend diag with CFS & 'normal' bloods - however she did have low iron & Vit D and now gets good days more often - but no treatment for CFS, just pacing & 'live with it'). sorry for the length of reply on a poll. Jane
none
I have PCOS and I take vitamin B and was low/under range but not officially Pernicious Anaemia.
Fortunately I do not have to deal with any of these conditions. PR
I have official diagnoses of fibromyalgia, bipolar, depression with anxiety and hypertension as well as hypothyroidism. I feel that I qualify for a diagnosis of ME but apparently you can't have that with a severe mental health disorder or have any type of thyroid disease (according to international criteria). Is this right? I don't understand why. Hypothyroidism could be explained by ME and my bipolar could be explained by the psych drugs I've been bombarded with due to depression from not recovering from the terrible flu I had in 1995 which started my troubles.
I am sorry you have so many problems. It is not unusual for people to be deemed to have a mental health issue with thyroid gland problems, due to the fact the our brain has the most T3 receptors, of which we have billions in our body and cannot live without T3. Synthetic T4 is supposed to convert to T3 but some people cannot convert properly. Also people are diagnosed by the TSH blood test, which isn't always the case.
This is a link to thyroiduk.org and you will see that other diagnoses are related to the thyroid gland. Depression is a symptom and bipolar and hypothyroidism can go hand-in-hand.
thyroiduk.org.uk/tuk/index....
If you can get a copy of your latest thyroid blood tests, complete with the ranges and post on a new question for others to comment and try to help you know more than your doctor. We have to read and learn as much as we can in order to improve.
worldthyroidregister.com/Go...
thyroiduk.healthunlocked.co...
Regards
Only seem to have FM when my thyroid levels are low, which they have been sinc antib iotics over 5 years ago. Before this was quite well although with not as much energy as I used to have before sub-total thyroidectomy.
ME Fybro mentioned told likely but no definitive diagnosis.
Arthritis yes (from X rays)
in form of wear and tear but not any of the arthritic diseases.
Addisons disease checked for about twenty years ago. Negative.
Myasthenia Graves disease tested for by eye specialist. Negative
I am now hypo due to TT and am now being terated for depression I wonder how many of us suffer from depression I noticed you removed it from your Poll I also have to take calcium and D3 have B12 injections every 3 months
there was a poll already which included depression
thyroiduk.healthunlocked.co...
I suggested this one with other autoimmune conditions (mostly!) in mind, unfortunately the limit of 8 options is just not enough for all 'other conditions'! J
ta got it and done it x
My "CFS" as labelled by my Endo due to "normal" bloods is responding nicely to 225 mcg of Levothyroxine diagnosed by private Doc. Iam afraid CFS was a convenient cop out by her to avoid treating me appropriately.Iam proof that In range bloods DO NOT mean "NORMAL".
I don't know about ME but I can tell you that Fibro, in the private sector does not exist. I have Fibro in NHS world, I do not in the private world. I paid for my full bloods as the NHS would not, so I went to Genova and am going for further tests. Unfortunately I have to label myself when speaking to my GP yes I know i have Fibro, but that aside will you test for this that or the other otherwise anything you suffer from just goes down as Fibro !
I agree, privately other causes can be investigated, just for example BUPA have this to say about the condition.... (unfortunately like many others, I'm not in BUPA!)
Can someone please tell me what Sorjens syndrome is?
The British Sjögren's Syndrome Association (BSSA) has an information sheet which starts like this:
Sjögren’s Syndrome is the UK’s second most common autoimmune rheumatic disease, yet the condition remains under recognised and frequently under treated. It does not command a high profile within the medical profession, and the general public is largely unaware of the problems faced by sufferers. In reality, Sjögren’s Syndrome is a debilitating, distressing and miserable condition.
It affects approximately 3-4% of adults in the UK¹, with a mean age of 50 years.
90% of patients are women.
In Sjögren’s Syndrome the secretary glands that produce saliva, tears, vaginal, and other secretions develop a form of inflammation, similar to that seen in the joints in patients with rheumatoid arthritis. As a result of this, these glands stop working leading to dry eyes, dry mouth, dry skin and also dryness of the gastrointestinal tract. These features, as well as being very uncomfortable and unpleasant, means those sufferers may have difficulty swallowing dry foods and also dryness of the large bowel can cause symptoms similar to irritable bowel syndrome (IBS).
The clinical presentation of Sjögren’s Syndrome is variable, but typical symptoms include;
o.. Dry itchy, irritated eyes
o.. Dry mouth and difficulty swallowing
o.. Joint pain and muscle aches
o.. Low mood, irritability and impaired concentration
o.. Disabling fatigue
Sjögren’s Syndrome is an autoimmune disease, a condition where the body’s immune system starts attacking parts of the body instead of fighting infection, this is mainly the white cells, which travel in the blood stream.
In the case of Sjögren’s Syndrome, they attack the glands, which produce tears, saliva, skin, bowel and other secretions.
bssa.uk.net/pdfs/informatio...
Rod
i wish GP AND health people would do more for us how can they say this illness is life threating but no one is doing any think to help us sad to think we are not worth the help
tateygreentea
Hypothyroid with the condition of Fibromyalgia currently 51%, Hypo with ME/CFS 29%
(are these mostly the same sufferers I wonder, as surely not as much as 80%).
I have 3 others but only had the option of 1 so I chose ME
If you mean you have others that are in that list, you are not restricted to choosing just one. You can tick as many as are relevant to you.
Really? oh dear when I tried each time the other 'previous' tick disappeared, must have been my browser then
Odd! What browser did you use? Would you be able to try a differet one (don't worry if you can't, just that some people have more than one installed on their device).
RA - this may not have been a multiple option poll. x Was done in a hurry - never again! x
Whilst I have not actually tried to submit with all boxes ticked, I can certainly tick them all.
'Radio buttons' (i.e. the round ones), usually mean one choice only.Square Tick boxes usually mean multiple selection is enabled.
I have mentioned this recently on another post but, when i was on 250mcg of levo and still very symptomatic while my blood levels looked fine tsh supressed and ft4 near the top i was told that its not my thyroid now and that i have CFS and ME and then i was told there isnt anything i can do about the way i feel. I didnt agree, i thought i wasnt converting t4 into t3 so i went private and i am on t3 only treatment and feel nearlly well!!! I was so close to being diagnosed with CFS and ME and thast so wrong. If i wasnt as strong minded as i am then i would be here today still very ill. I do know people with ME that dont have a thyroid issue and it is very dibilitating for them so im not saying these other conditions dont exist but, i do agree that if your still symptomatic when your levels look ok and particularly if your on Levothyroxine or similar then unfortunatly its a lot easier to be diagnosed with these other conditions.
What i would like to know though, if you are hypothyroid and you have fibro, CFS or ME or all three etc then how do you know what symptom belongs to which disorder? as they all overlap dont they? how do you know your thyroid is fine but the symptoms your suffering with are due to the other conditions?
I hope i wont offend anyone in asking these questions,.
My mother had many diagnosis (except hypo) which she is taking nearly a chemist full of medcation for but the specialists dont think she has a thyroid problem (which ive told her i think she has) as her tsh is 3.? and her ft4 is 15...all within normal range, but she's getting worse as time goes on. 6 yeras ago she was fine now she has a diagnosis of CFS, ME, Fibromialgia, Polymialgia, high blood pressure, high chloresterol, depression, carpel tunel syndrome, rumatoid arthritis, siatica...i think thats it??!!
p.s. im not saying that i dont believe my mother doesnt have all those diagnosis and that the thyroid is to blaim possibly, but i do feel the reason she is getting worse is due to an undiagnosed and untreated thyroid disorder, i keep telling her to test her antibodies...i bet they would hit the roof!!!!
Hi
This will probably get missed in here - I would advise copying & pasting as a new Q.
xx
I forgot to say, I dont have any other diagnosis but im almost certain i have Pernicious Anaemia which im looking into
Alopecia Areata needs adding, we come across individuals that have Alopecia and hypothryoidim. Like me, I'm euthyroid and alopecia totatlis.......
Autoimmune diseases are clearly linked. The researchers know it and in most other countries the endocrinologists seem to proactively check if you're still symptomatic. The reason is many of the symptoms of hypothyroidism overlap with linked autoimmune disease. Fro me it was pernicious anemia. And 30% diabetes mellitus II sufferers have thyroid problems too. My background is in antibodies so I think it's criminal that once again doctors look at things in silos and assume the body behaves that way. I call it poor training of people who can rote learn but not think - that's a generalisation of course - there are doctors out there (many of them) who look more broadly when one system goes out of balance.
My underactive Thyroid was discovered when I had Urticaria that I couldn't shake - literally giant nettle rash that never went away. Initially thyroxine also sorted out the urticaria but it gradually returned - now I take enough anti-histamines to fell a horse every day and I have also been diagnosed with Fibromyalgia so add in lots of painkillers too. My thyroxine dose is currently 175 micrograms and I have never been able to persuade my doctor to try natural thyroid or even T3. This isn't really a question but I would be interested to find out if anyone else has my particular variety of pain.
I also have sarcoidosis and Ménière's disease as well as Hashimotos and coeliac disease. The Hashimotos became active after my first dose of sarcoidosis 21 years ago.
This is a link which I have just read.
Don't you think all these autoimmune illnesses are different views of the same thing?
I would like to see a specialist about my Thyroid , but my Dr never lets me.
4444sweetbell
