I'll be as brief as possible. Dx with endometriosis in 2004, been in constant chronic pain since 90s. Told in late 00s that I have ME. Over the last few years I've developed pretty much every symptom of hypothyroidism and various hormonal issues - I spent two years on a drug that put me in menopause and my hormones have felt screwed up ever since (completely lost the ability to be intimate for five years). Since I came off the pill a year ago, my cycles have varied between 3 weeks and 8 weeks at random. Every blood test I've had has been apparently "normal". Went to see a different GP in the practice - she said it was probably either hypothyroid or PCOS and sent me for hormone and TFT blood tests - had to wait ages as that cycle was 8 weeks.
Just went in for results and was told everything was normal. No problems at all. I broke down and told her my fatigue is so bad I haven't left the house in a fortnight, I'm gaining weight, constant tightening in my throat, insomnia, eczema, periods irregular, etc etc
She said "you're depressed". Rather than just accepting the pills and not taking them, I fought back. I told her I am NOT depressed. I suffered severe depression in my teens and I know how it feels. She said the problem with my cycle is stress, and she sees patients like me all the time, all the same symptoms and normal blood tests, and it's depression - then she said I don't have to accept this diagnosis if I don't want to. I said I'm sorry, I'm sure you hear this all the time but it's not depression. My mum is dying and yet my mood is not low, I'm not tearful, I'm generally positive just fed up with being ill all the time. She said that in that case it's just chronic fatigue and said she would refer me to the local chronic fatigue team.
I asked for a copy of my results and I expected to see my TSH within the guidelines but high - nope, it's quite low. My hormone levels are low but not outside the ranges. I don't know what to do.
Maybe it is just chronic fatigue and I'd latched on to the idea of it being my thyroid because at least that's treatable. I spent from 12-22 being treated like a faker until my endo dx, which has left me with nerve damage due to delayed dx.
now I've been trying from 27-32 looking for answers as to why I can't work or go out or even take a bath without being wiped out for hours. I'm not depressed but honestly I feel pretty low and desperate right now: I feel like it's time I have to just stop and give up. This is the third GP in my practice I've seen and she's the best of a bad bunch so I can't go to another - I'm on a lot of morphine and at least she isn't lecturing me on that. I know what they think - I'm not getting the answers i want so I'm just seeing another. As it is I've been discharged by all hospital depts and left to rot - in London I had amazing care but down here I'm just being fobbed off.
Here are my results for what it's worth - she ordered a TFT but only two results came back, not sure if that's normal.
Any advice would be appreciated. Would consider finding the money to see an endocrinologist privately and just ruling this out once and for all but money is tight and not sure what this would cost with tests.
Serum free T4 level 15 pmol/L (10-22)
TSH 1.7 mu/L (0.3 - 5.5)
And the others:
Sex hormone binding globulin 37 nmol/L (25 - 122)
Testosterone 0.4 nmol/L (0.2 - 1.7)
Free androgen index 1.1 (<4.0)
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It could be that the endometriosis has made you anaemic which can certainly give you some of the symptoms you describe. Im not sure what the symptoms are for ME dont they include fatigue and insomnia?
It is horrible to feel ill i can vouch for that and very frustrating if you have no real set answer but those thyroid results look pretty good i certainly would be happy with them.
It might be worth asking your gp to test for anaemia and vit b12 deficiency.
If your period are that irregular and it bothers you ask for a referral to gynae they may be able to sort you on that front and do more comprehensive tests im sure i had the whole shebang to test for pcos: fsh, lh testosterone god knows what else and they could do an ultrsound too to check for the tell tale signs of pcos which could explain the bad skin irregular periods and weight gain.
I get the impression from your post they have done a half arsed job and fobbed you off but dont stop harrasing them (in the most polite but sick off you as you're now part of the furniture kind of way) until you have some answers.
Go back to your doctor and INSIST that they measure your FT3 level. That is the only reliable test for hypothyroidism. Measuring your TSH only tells you how well (or not) your pituitary is working, since it is the pituitary that produces TSH.
While you are there, ask for iron, folate, ferritin, Vit B12 and Vit D to be measured.
There is no such thing as ME and chronic fatigue is not a "syndrome" it is a real and debilitating symptom of an underlying condition that needs proper diagnosis and treatment.
I think you should start by changing doctors. Is there another one in the practice you can see?
Then, hop over to Genova UK and order the saliva cortisol test to see how your adrenals are doing. I have a feeling you might find they are struggling. thyroiduk.org.uk/tuk/testin...
Get all those tests done and come back with results and ranges, then we can start helping you.
Thanks very much to both of you for your help. I will do as you suggest and follow up those things. I think all my vitamin and iron levels were checked a few months previously and were "normal", I'll see if I can get a copy of those results (the last GP I saw did testing for all sorts of things and nothing came back from it so she too prescribed Prozac, which I didn't take).
I do take morphine and I know some of the symptoms could be caused by that, but not all - plus I've been on it for a long time.
ME has long been thought of as not a real condition - a bit like IBS - but actually it is (myalgic encephalothapy I think). However, I have never properly been tested for this and my fatigue is now far more debilitating than my pain. I think a lot of people dx with ME/CFS actually have something else because the actual inflammatory condition they're talking about is seemingly quite rare.
She has referred me to the chronic fatigue team at the hospital so perhaps they can help with some testing or maybe even refer me to an endo if I beg.
On top of all this, I came off all hormonal treatments a year ago because I was having such problems and now my endometriosis is worsening - I'm having dreadful inflammation pain after sex and other pains which means either my Endo is worsening or I have more adhesions. I've been discharged from gynae though, and I don't want any more surgeries (already had five) unless it's essential or hormones so they can't do anything anyway.
I'm just sick to death with it all. My mums cancer has come back and is incurable and that's enough to deal with right now. I think I might wait until things are a bit calmer and keep a diary of my symptoms before going back.
I would just like to say a diary is a good idea to get those thoughts down, and suggest just do what you can at the moment, give yourself time to rest and possibly time to heal, and time for mum x
Meanwhile, there are a few things you can try, when you're ready,
please sort out any low vitamin/minerals, especially irons vit B12 & folate, Vit D for mood & bones (please don't underestimate them, there's no such thing as a 'drug' deficiency and 'normal' can be the lowest number in range, please get your actual results) progesterone cream may help? (I haven't tried it just hearsay, good reports that it keeps that oestrogen from causing havoc), perhaps worth trying anyway.
Thanks Jane, really appreciate the help. I've just been looking into private blood tests and may just get all my thyroid and vit levels done myself. I'm sick of being made to feel like a faker or an annoyance, maybe it's time I get more proactive.
Have already started my diary - may also start using the ovulation kits I have to see if and when I'm actually ovulating. The info I've seen tonight suggests that hormone levels need to be checked throughout the cycle to see if they're "normal" but whether that's the case or not, I don't know.
Without getting all TMI, when I was on the menopause-inducing treatment for two years, I completely lost my libido and it didn't come back when I stopped it. It took another four years to return. In that time I was having all sorts of hormonal symptoms, even when I took long breaks from the pill. Since I stopped the pill for good last year, it has come back and I've started piling on weight, my cycle is all over the place, my skin has gone crazy, I've developed a really rare type of eczema, I have strange brown patches on my forehead again, my hair is thinning, my moods are up and down... Something is not right with my hormones, it's pretty damn obvious. Even if it was the morphine affecting my hormones, surely the blood tests would show that?
Sorry, I don't mean to ramble, just feeling so frustrated. I really appreciate you all responding. I am a member of the endo group and post occasionally but it's not so much of an issue for me these days, I'm pretty used to it now.
we see allsorts here, PCOS & thyroid seem to crop up regularly - I'm not saying we know the answers here but at least we know it's not just about thyroid (but that pesky gland does tend to suffer) there's so much in the mix it's a puzzle, and getting better depends on how long you were poorly.
But we have to start somewhere.. as sadly GP's tend to think it's in your head.. grr! I should say I know nothing about sex hormones.. but that darn 'pill' has a lot to answer for!
Dry skin - classic Thyroid symptom & brown patches - check out vitiligo?
Hairloss - check ferritin & biotin.
Skin problems can be diet/gut issues - just a thought to consider - not trying to add to your worries!
(if you have antibodiy tests TPO that would confirm autoimmune stuff going on - which often leads back to gut issues).
Ramble away - sometimes there is a clue which reminds folk of their problems and how they solved them - one size doesn't fit all mind.
May I ask a daft question? are you double jointed as this can indicate a collagen problem (this is from my other site, feel free to ignore if I'm being too nosy/daft just wondering) Jane again x
I've just got back in and re-read your original email plus some of the replies. It does sound as if you have M.E. Unfortunately as far as I know there is no test for M.E. (or there wasn't when I first collapsed), so I am not sure how much confirmation you will get from the Chronic Fatigue Team at your hospital. Which part of the country are you in, because you mention leaving London, and being "down here". I live in the West Country but used to live in Surrey, so I might be able to pass on some names of people who could help. If you are in Dorset, I know a practitioner in (I think) Bridport.
I am pretty well now, although I am still sorting out my food problems and still have to pace myself, but I was bedridden with M.E. for 2 years and very ill, and then struggling for a number of years afterwards, but the only solution for me was to go down the alternative therapy route because back in the late 1980s I was very lucky to happen to have a GP who immediately was able to diagnose me because I was a so-called "classic case", but there was no treatment available and he didn't know what to do with me. However, many people in that era could get no diagnosis at all or were misdiagnosed.
I have since gone on to have 2 lots of breast cancer with 5 years of Tamoxifen which messed up my hormones (if they hadn't been already messed up), and I developed an under-active thyroid. I don't honestly think it was part of the M.E. at the start. I know Candida and food intolerances played a big part in bringing me down and Dr Myhill's website looks at all of this. I have since done the GAPS diet and I reckon my gut is now in the best condition it's ever been. I can recommend the GAPS book "Gut and Psychology Syndrome" by Dr Natasha Campbell McBride as it explains a lot about how many of us are not even born with the right gut flora, and then we lose the few we have by killing them off with antibiotics. I now realise that if the gut's not healthy, then the rest of the body is struggling and will be showing all sorts of symptoms.
Unfortunately many of the symptoms of several different illnesses overlap which causes confusion.
Well, I really feel for you, Cupcake, because I've been there and it's a really horrible situation to be in. But hold on to the fact that you CAN get a lot better, because I did. It may cost you some money to pay for alternative therapies and I struggled financially, but as I felt too ill to go out and do anything and MUCH too ill to have a holiday, I reckoned it was better to spend money on my health so I scrimped and scraped on other things. Alternative therapists are usually very compassionate people who will offer concessionary rates if you're too ill to work. One even treated me for nothing for 3 months when I was desperate, and I agreed that she could use my medical history for a case study.
So hang on in there. There IS help, but I doubt you'll get it via the NHS, who are good with a heart attack or a broken leg, but not with something more ambiguous.
Thanks for your advice. No, sadly there's no test for ME (well, there are things that can show up in blood and MRIs but it's mostly symptom based), but I guess I'd hope they would rule out other causes before making a firm diagnosis. It seems they've tested neither my thyroid or hormones fully and correctly and instantly want to jump to the conclusion that it's depression when I feel mentally fine.
I'm so sorry about the breast cancer, I think tamoxifen may be like the zoladex I was on for two years and it helped me but I paid a huge price for it. My mum is currently having treatment for ovarian cancer and I know how tough it is.
I've tried a lot of alternative therapies with no success so far - I'm open minded but tend to want some proof of things, my mum has been ripped off by so many charlatans that I'm now pretty cynical.
I will do some research and find the money somehow for some private testing and take it from there.
Rosetrees, I know you probably don't know any better but I - and I'm sure the other 250,000 sufferers in the UK alone - very much resent your comment that there is no such thing as "M.E." It has been recognised by the World Health Organisation because M.E. is global, and surely you are not saying you know better? I have been ill with M.E. for 26 years so probably have more experience of it than you. Please be careful what you say about things like this when you haven't got your facts straight.
I agree that ME is a real disease and people are very ill with it. It is just that before the thyroid gland blood tests came in people were diagnosed with clinical symptoms alone and given natural dessicated thyroid hormones. The doctors knew all the clinical symptoms and weren't dictated by blood tests.
Around ten years after the blood tests were introduced, Dr Skinner, Virologist, was asked to look at some of these patients as the Consultants couldn't figure out what was wrong and thought it might be a virus but many (not all) of these patients Dr Skinner diagnosed as hypothyroid using clinical symptoms alone and gave them a trial of thyroid medication and they improved.
It was around ten years after the 'mysterious symptoms' that names were given, ME, CFS and Fibro.
If you ask to borrow 'Tears Behind Closed Doors' from the Thyroiduk.org library you will see that Diana Holmes was diagnosed and treated for numerous illnesses (none of them ME) ending up in a wheelchair before finally seeing a doctor who 'when she immediately entered his surgery' said you are hypothyroid and she wrote a book about her years before seeing a particular doctor who specialised in hypothyroidism.
Dr Skinner wrote several letters to the BMJ stating that many peple whose thyroid chemistry didn't fit the bill were doomed to illhealth as clinical symptoms were ignored.
Best wishes.
PS. Unfortunately for us, Dr Skinner died last year and fought for years to try to educate but it appears the 'Endocrinology' is a closed shop.
Thanks for your reply. It's heartbreaking how many people are going through this. My health problems have slowly chipped away at me until now there's very little of me left. What I wouldn't give for a single appointment with my old GP back in London - she saved my life once, when I crawled up the stairs to her surgery in agony. She knew me, knew that normally I tolerated high levels of pain well and that this wasn't right so she admitted me straight to hospital and called me an ambulance. I'd spent a week with gallstones blocking my bile ducts and had developed pancreatitis and a severe infection of the gallbladder. I wish I could find a doctor who understands that I'm not a complainer, I'm just desperate to have some quality of life back.
All the doctors who were trained in clinical symptoms have long retired or died. I know of only one left. The fact is that the blood tests weren't brought in to diagnose us, only as a tool but it has reversed right round to the blood test alone or not even thinking of the possiblity. I wasn't diagnosed until TSH was 100.
It took me several years to get a thyroid diagnosis as my TSH was middle of the range and Free T4 was borderline at 10 (the range was at that time 10-26) and I was frequently told that I was hypothyroid from my symptoms until the blood results came back. Anyway, I read "Tears Behind Closed Doors", also "Solved: The Riddle of Illness" by Langer & Scheer, "Why am I so Tired" by Martin Budd, and I am now reading "Stop the Thyroid Madness" by Janie A Bowthorpe and "The Iodine Crisis" by Lynne Farrow. All very helpful books.
At one point I had an appointment with Dr Skinner in Birmingham but was too ill to travel so had to cancel it.
That's a shame but I don't think the doctor's really understand how very, very unwell we can be. Instead of looking at their patients and diagnosing them by their clinical symptoms, at least give them a trial or, if already on medication, raise it till patient feels better. They have lost their way and many untreated/untreated are losing their lives due to illhealth. If you were able to see another sympathetic doctor, louise.warvill@thyroiduk.org has a list and one may be near you. I think there are a couple of NHS too. Dr Skinner, persecuted by the Endocrinologists and GMC no wonder he had a stroke.
Have you ever had laparoscopic treatment on your endometriosis to have it removed? It needs to be removed by being cut away, not burned away by laser, but hardly any surgeons do that in the UK (or at least they didn't when I was seeking treatment). Endometriosis is a bit like an iceberg - what shows on the surface is only a fraction of what is there. Burning away the top doesn't actually get rid of it.
Do lots of research, email consultant surgeons to find out who specialises and how they work, find out if they do blunt dissection removal of endometriosis. Look into the writings of David Redwine M.D. on the web. He has now retired but a few years ago he was considered to be the best surgeon operating on endometriosis sufferers in the US. You want to find someone who works in the same way as him (in the UK, assuming you live here).
This society would be a good place to start looking for a surgeon :
Then of course you have to persuade your GP to refer you. Get your family involved so that you have moral support, and take them with you to appointments when necessary.
Sadly yes, I've had five laparoscopies, most were excision surgery under an excellent specialist in oxford. Sadly for me, I have mild to moderate endo but severe pain - not uncommon, but it means that as soon as a tiny bit returns, the pain returns. I've never had more than 4-12 weeks relief even from excision surgery. I stupidly agreed to a lap at my local hospital a couple of years ago, as it had been five years since my last lap, and it didn't help at all - it obviously wasn't thorough and I have no faith at all that they even removed everything they could see, let alone anything else.
I've resigned myself to the fact that my pelvic pain and endo symptoms aren't going anywhere - I now just take my morphine and get on with it, I don't have big flare ups any more except during periods (the only benefit to my now irregular cycle is fewer really bad days each year!).
I've been on painkillers solidly for ten years, and hormonal treatments solidly for twenty years (until last year when I quit). I've been in daily pain for about fifteen years, I've had seven operations in ten years and have had numerous tests and drugs. I spent two years of my twenties in menopause with no HRT. My body is, I suppose understandably, completely buggered. I'm a 32 year old woman who feels 80. I don't work, I don't go out, I don't live at all - thank god for my husband who keeps me sane and supports me emotionally and financially without complaint. I really want a family but can't see how that's feasible.
I can't get a single doctor to even care enough to want to help me get to the bottom of things and help me to feel a bit better, no matter how much I plead and reject the notion that I'm just depressed, they don't want to know. I think back to the amazing care I had when I lived in London and I wish I'd pushed harder with the symptoms that were starting to show themselves, but I put it all down to the stress of my crazy job and trying to do it when I was too sick.
Sorry, I really don't mean to go on. Funnily enough, for the first time in a long time I feel very depressed tonight - still not going to take the Prozac though (maybe I should for a few months to prove to them that it makes no difference?) because that is not the problem, whatever they say.
Have you had your anti-bodies for the thyroid tested ? Often the results of the T4 and T3 can be in range but there could be anti-bodies over range. It happened to me.
I am really sorry to read about all your problems and can very much relate to many of the things you say but have to dash out shortly and don't have time to answer you properly. However, I would say that 1) M.E. can't be diagnosed until you have had the symptoms for 6 months or more. It IS as real illness despite what other less-informed people might say. I have had it for 26 years.
2) It sounds as if your GP was clutching at straws and you really do need to see someone in whom you can have confidence. It has taken me a long time to find a "sensible GP".
3) Check out the website for Dr Myhill in Knightley, Wales. She is very experienced in thyroid problems, gut problems, hypoglycaemia, M.E., allergies and environmental medicine and has kindly put an enormous amount of info on her website. I have found her site very helpful and after a lot of deliberation I decided to have one of her tests done, the results of which I took to my GP. He wasn't too pleased that I had paid for private tests but as I was getting nowhere with the NHS, it was well worth it. He couldn't ignore the test results, and consequently I got some treatment.
Thanks, will look at that. I have had ME symptoms for about 6 or 7 years now, was under a great chronic fatigue team when I lived in London but things suck here.
You don't even have enough test results on your thyroid to show much, but i suspect your ft3 is low, which would account for your symptoms. I would not waste anymore time, and contact the administrators here or search here for private testing. Continuing with doctors will just leave you ill longer.
After continuing to read more about your situation..morphene slows metabolism. Which is not good. You need to find the underlying issues and get off that crap ASAP. Endometriosis is tied to autoimmune conditions..i have Hashimotos and had Endometriosis, Adenomyosis, Fibroids, before my Hashimotos showed up. I'll bet you have it too. Also, you need to have saliva feamle hormone tests..it could be as easy as taking some progesterone cream, before you end up with a hysterectomy and your ovaries removed, because you develop cysts and are in so much pain and desperate. YOU WILL NOT FIND A REGULAR DOCTOR TO DO THE RIGHT TESTS, YOU WILL NEED TO DO THEM ON YOUR OWN OR FIND AN ALTERNATIVE/INTEGRATIVE DOCTOR TO HELP YOU. i PUT IT IN CAPS TO MAKE A POINT..DON'T WASTE MORE TIME. I'm sorry about your mom, she needs you and you will need to be better than you are now to help her.
You sound like you are a classic case os Estrogen Dominance. You need to get Estrogen, progesterone, SHBG, FSH, LH and Androsterodine, and Testosterone tested on day 3 and day 21 of you cycle, depending on the length of you cycle.
If you cycle is so irregular then get it tested on day 3 if you can. I think a lot of your symptoms sound like Excess Estrogen, low Progesterone...maybe you are not ovulating at all, probably hit and miss due to low progesterone.
You have low Androgens, Testosterone is predominantly a male hormone but us lady's need it too! It helps with skin and bone condition and of course sex drive and ability to orgasm.
You need to get your BMI into a normal range and cut out all sugar and starchy carb's...also try to limit meat and certainly processed meat in your diet to eliminate as much as you can Phytoestrogens. Weight loss, low body fat, lots of good clean eating, plenty of Cruciferous veg at every meal will help a lot.
Get off the crap you are on from the Dr's, clean up your diet to the extreme and exercise daily....all this will give your body the best possible chance to rebalance it's own hormones.
You first need to get all those tests done, then start small and be prepared to work hard to regain your health. At the end of the day you are wasting your time and energy with Dr's and you will do so much by living the cleanest, healthiest lifestyle you can.
here are some interesting things on Endo:
Change your diet to minimize xenoestrogen exposure. As much as you can, eliminate nonorganic dairy products, beef, and chicken – because organic foods contain no added growth hormones. Increase nutrient-rich foods, especially cruciferous (broccoli cauliflower, Brussels sprouts, kale, cabbage, and bok choy) vegetables, soy, cold-water fish (small fish when possible) and fiber, all of which support hormonal balance and help clear extra estrogen from the body.
Follow a whole foods diet, carefully watching your carbohydrate intake, to support healthy insulin metabolism and also support overall hormonal balance. This includes limiting alcohol intake. Remember to eat protein at each meal and at each snack to keep the hormones more stable.
Maintain healthy levels of body fat to limit endogenous estrogen production. Body fat is a secondary production site for estrogen, so being overweight often means excess estrogen.
Supplement with vitamins and minerals (especially calcium and magnesium) to make up for what is lacking in your daily food intake – pharmaceutical grade is the best.
Supplement with phytotherapy to gently return hormone levels to normal.
Supplement with omega–3 essential fatty acids as a natural anti-inflammatory.
Minimize exposure to xenoestrogens in your environment. Don’t microwave food in plastic wrap or containers, use ceramic bowls in the microwave and try to minimize the use of plastics for food storage. Store the food in glass containers.
If you have endometriosis, consider adding acupuncture with pelvic massage to the above. Castor oil packs will help reduce pain and inflammation. We also recommend you check out the innovative therapeutic approach developed at Clear Passage Therapy.
Thanks I will look into this. I've tried several things in the past, such as accupuncture, but without any benefit sadly. I will definitely look into getting those tests done - thank you. I know my hormones are messed up, they have been for years, and I don't believe that having a single blood test during a period can have given them a full picture of the situation. I'll be taking matters into my own hands as soon as I can afford to do so!
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Spoke to my gp re-private results. I could cry :(
Carbimazole issues
Feel like giving up!
Giving ndt a go when undiagnosed
Feel like giving up!
