My Story

So I had a serious anaphylaxis 18 years ago after taking echinacea, devils claw and another herbal med prescribed by the herbalist I was seeing to address high stress job and impact on me. I slept upright for a year as lying down my chest filled up with fluid.body covered head to knee in large very itchy swellings. nothing helped. large steroid dose for 12 months continuously. Liver compromised.

From that I lost the sight in my left eye one morning, 6 months later waking up in serious eye pain and loss of vision in left eye and was diagnosed with Uveitis at hospital same day.17.5 years later and in January 2015 I was diagnosed with Hypothyroid. Prior to Jan 15 I had been seeing hospital very regularly for uveitis treatment: i have had double cataracts removed, have regular implants of ozurdex in both eyes and in June 2014 i entered a drugs trial for my left eye- worldwide study of Illuvien , intended to last 2-3 years rather than the 3 months the ozurdex lasts (supposed to last 6-9 months).

4 years ago I started on a regime of chemotherapy and steroids every day for 4 years -immunotherapy to try to turn off immune system then turn back on and hope that Immune system corrects itself where eyes were concerned. It didn't work so onto the drugs trial as the next step. That hasn't worked either and since June 2014 I have had 4 ozurdex implants in the trial eye as well as the non trial eye (latest last Friday)

The chemo and steroid were dreadful- my body does not tolerate steroids well- i get roid rage, cant sleep and want to eat everything or smash its face in!

I developed skin lesions 15 years ago on left leg which never healed until last year with a radical treatment. I have multiple allergies. I have developed really bad gut problems and asthma. Gut investigated thoroughly by a fabulous Prof Brown at the Winfield hospital (private but NHS referred) he said I had crohns like symptoms and he found numerous polyps when he did an colonoscopy (lovely procedure). Asthma worsening and have needed emergency nebulising 4 times in 2 years.

I have piled on 4 stone in 4 years.

2 years ago I started to feel very tired and began having severe leg swellings to the point that I could not walk far at all and even sitting down caused serious pain in my knees so had to stretch legs right out when sitting. I have always liked the cold rather than heat but now I sweat buckets all year round and just cannot tolerate heat at all. I feel very faint very often and have had constant tinnitus in left ear for those 2 years. At work I have 3 fans concentrated on me at all times at my desk- when I go to other peoples space- I really suffer and pour sweat-embarrassing.

I know that most medics I have seen have written off my swollen legs and feet as being due to the fact that I am just PLAIN FAT!! Hot weather does make it worse.

I pee constantly. I Have chronic diarrhoea way too often and fall asleep at the drop of a hat now. Its embarrassing.

My face and eye are swollen all the time and my hands swell up too. My skin is bone dry no matter what I use and my memory has gone. I actually started to think that I might have alzeimers last year- as did my family I later found out.

I went to a different GP at my practice and regaled him with a list a hypochondriac would be hard pressed to conjure up and by then my knees were so swollen I could not get up and down from chairs and could not get on the floor to play with my grandson any more. I was on 2 sticks by this time but only at home as I could not bear to use them in public.

Night terrors/nightmares like you wouldn't believe and now what I think are panic attacks...such an overwhelming sense of impending doom. Scaring me to death as I cannot rationalise this at all.

Memory loss/panic/anxiety/making mistakes at work and all the while feeling dead tired every day no matter how much sleep I had ( although in truth sleeping has not come easy for several years). GP put me on Zopiclone sleeping pills- which NICE suddenly gave a warning about last August (side effects in line with some of the things I was having) so I weaned myself of those. But Zopiclone did not explain everything so in desperation I saw this other GP who looked at my knees and my hands and said I reckon you have thyroid problem . Put me on 50 mg Levothyroxine there and then, took bloods and I went back 2 weeks later for results. He said I was Hypothyroid. I said since taking Levo my knees were reducing and my head was clearing slightly - remarkable !

I have no idea what results said but will ask that I have some printouts in future. Although have not had levels checked since January and it looks like more regular checks are needed from what people post here.

I recently had a chest x ray as I failed an asthma check and was told that my heart is now enlarged- it was fine in 2011 with last x ray.

Had knees x rayed too - both show arthritis (i am 54 and either peri menopausal or menopausal, GP not sure which).

I am HLA B27 positive tissue type as was my father who died of Wegeners Granulamatosis aged 55.

I suffer from migraines and have been losing teeth like theres no tomorrow. I get chest pains- so bad at times I think I am having a heart attack.

I try to be proactive in my own care as much as possible but feeling that the Hypo issue is in need of more from me.

I arm myself with knowledge around uveitis and associated conditions - all auto immune it seems.

TBH i need to continue working as long as possible or will lose everything including my home. I am having a serious issue with my employer- from worst period of ill health last summer and almost lost my job because of this. I was so stressed out over such a long period of time that I believe that trigger the Thyroid issue but will probably need to try to prove that as far as work issue goes.

In all honesty I feel like they should chuck me away and start again. My body is totally rubbish.

Just a silly thought I keep having- my left side seems more affected than my right side. Sounds daft but I am certain that left half of everything is worse.

so after all that misery - any thoughts on what I should be asking about/asking for with GP? or someone else?

writing it down for the first time- it looks hopeless and just too far fetched I suppose. But its all true and its my story so far.

well done to anyone who ploughed through this - its a big ask I know.

I just want to know what is happening to me, why and what I/they can do to help me out a bit for some quality of life. I try to stay positive even if I feel less than and sometimes the smile is fake to stop people asking about it or assuming that its just me being pathetic again. Peoples compassion doesn't last.

I should also mention that my flesh is painful to touch- especially my legs from the knee down. Even the light touch of my little grandson is unbearable....what's that about? It came along with the other stuff about 2 years ago so I assume connected with Hypo but may be wrong. anyone else get that?

I have also developed problems swallowing/choking- thats a bit scary. And a constant loose cough.



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11 Replies

  • No chucking in the skip! {big hugs}. What a truly rotten time you've had. I wish I could say we don't often have stories as dramatic as yours here, but actually, it's all too common.

    The trouble with autoimmune disorders is that they hunt in packs. If you get one, you often get another... then another...

    Are you still on 50mcg of Levo? That's a starter dose at best - it almost certainly needs increasing.

  • yes still on 50. I have just been so rotten lately and having problems with work about time off for medical appts so a bit scared to go to too many but will catch up with GP soon as and ask for a check

  • hi jazz. Apologies for very late response. Been having a really bad time since I posted the tome above. I went back to go to ask for a levels check. They said I didn't need any change in levo. Alongside that and after years of rotten sleep etc my gp referred me to sleep specialist. After a sleep study I now have obstructive sleep apnoea

    and started cpap 5 weeks ago- massive challenge to adjust to this. The sleep trial showed that I was having 63 events of apnoea and hypopnea every hour!!! And my says dropped to 70%! This might explain a lot alongside the hypo and auto immune stuff......just had cpap review and had pressure doubled because of serious levels shown in data retrieved from first 3 weeks of cpap. Nurse says 50% of people cant manage cpap and give up. I hope I am in the other 50%! Had to get signed off work to deal with cpap and get it sorted otherwise I wont have a job for sure as you cant drive with try OSA. I have been telling my gp I couldn't sleep for about 5"years. Wish they had listened before now really.

    my body really is just totally rubbish. Struggling to find a PMA. Its all so damned debilitating and dramatic. What I wouldn't go for some banality. Trying to get medical early retirement from work now so that I can focus on getting as healthy as I can be but cant afford to just give up work and have no income at all. That'll be my home fine and at 55 it's not too tempting to just walk away with no finances to pay my way.


  • Aw, Molly, what a rough time you've had {big hug} x At least with the sleep apnoea diagnosis you now have a clue to why you were feeling so poorly - although sleep apnoea can again be a symptom of undermedicated hypothyroidism (I know - I sound like a broken record). Persevere with the CPAP though if you can. My boss (who's actually a good friend) recommends listening to radio comedy while you're trying to drop off to sleep - he has a CPAP mask. Something like "Just a minute" - anything like that. Audiobooks are great too - just something to take your mind off trying to get to sleep.

    I bet if you posted a new post asking for suggestions about how to cope you'd find there are other people here who've found a way to cope with it. I always find that no matter what you ask about here there's always someone who knows something about it!

    And query the 50mcg of levo - it's a starter dose. It can't possibly be enough. Again, if you ask for advice about how to get that changed, people will definitely respond. Keep fighting, blossom. I know this is so very very tough but everyone here will do their very best to help. xx

  • Welcome to the forum, Mollymoo53.

    You've suffered, are suffering, a lot but you're not ready for the skip yet. You ought to have had a follow up thyroid test 6-8 weeks after starting Levothyroxine to check levels. 50mcg is a starter dose and probably not optimal. Ask your GP receptionist or practice manager for a printout of your thyroid results with the lab ref ranges (figures in brackets after results) and post them in a new question for advice. If you've had ferritin, vitamin D, B12 and folate tested post those results too.

    Do you have visible swelling in your throat or neck? Swallowing/choking can be due to a thyroid goitre (swelling) or nodules. Goitres develop when thyroid levels are low, often in response to TSH flogging the thyroid to produce more hormone. Your GP should palpate your throat and neck to detect swelling and order an ultrasound scan to measure the size and condition of your throid gland if swelling is detected.

    The swelling and discomfort in your legs may be due to non-pitting oedema caused by hypothyroidism. The swelling should reduce when you are optimally medicated.

    I had carpal tunnel in my left arm and hand for years prior to a thyroid diagnosis (large nodule on left lobe) and have intermittent pain/discomfort in my left eye, temple and cheekbone so I don't think your comment about the left side of your body is daft.

    Have you had thyroid antibodies tested? Autoimmune thyroid disease (Hashimoto's) causes 95% of hypothyroidism. Stress can trigger thyroid dysfunction but it's probably impossible to prove it was work related given the stressors of your other conditions and peri/menopause.

  • Hi Clutter

    I am so glad I found this site - people are so knowledgeable and giving.

    I will take a list to GP of things to ask to be checked.

    I do have a swelling in left side of throat (just left of midline I would say and it hurts when I touch it) and shooting pains in neck sporadically. I choke on the smallest of things too - not a very classy sound when eating in public and spewing the offending item out.

    left side thing - i honestly thought I was totally crackers but you know when you feel in tune with your body in some weird way - I have felt left side was dominated by most of the rubbish going on, eyes, legs, throat, stomach, all left side. Right side affected too but not so much.


  • Hi Molly,

    Just wanted to welcome you to this forum. I think the others have given you excellent advice. And am sending you a big big hug -you've been having & are having such a rough time.

    Before I was optimally treated for my hypothyroidism, I too struggled with work & my employer also got fed up with me & I realised they wanted rid. I could barely walk, was in so much pain, legs arms face swelled up, eyes were puffy, tongue scalloped, ringing in ears, food sensitivities & gut problems, blood pressure shot up, felt dizzy & faint, memory was shocking, struggled to process & follow conversations, constantly tired, thinning hair, very dry skin, blurred vision & the list went on...

    Like you I had been put on 50 mcg of Levothyroxine & left for a year with no follow up. Crazy!! It should have been reviewed every 6 weeks and upped until symptoms disappeared and my thyroid hormone levels were in the top quarter of range. Instead my TSH had actually gone up and my thyroid hormones had fallen further!!

    Doctors are supposed to be taught that when a person presents with myriad of symptoms the very first thing they should look at is thyroid!! This is because it's like the clutch in the car it drives everything else -if it doesn't work nothing else does. Sadly in reality this rarely happens. Sadly also many people who are treated are under medicated too.

    To get this sorted you will have to be proactive once afraid but it will be worth it. xxx

  • So glad you have found this forum. It sounds as if you have been neglected for a long time in respect of the thyroid. You may find in the future that many of your conditions will ease/disappear once you are OPTIMALLY treated and taking all the right supplements to support the thyroid and your general wellbeing.

    As you know you are entitled to have copies of all your test results - they may make interesting reading. Perhaps low thyroid has shown up earlier - but not low enough for treatment. Sadly Docs ignore all the clinical symptoms as they rely too heavily on the TSH test. You also need the FT4 and the FT3 tested to see the bigger picture - and other have suggested - the thyroid anti-bodies too. The longer the thyroid is mid-diagnosed or undertreated - the more damage is done to the body. It is so sad and reading your post makes me realise how awful it all is when people do not receive the treatment they so deserve.

    Stick with this forum and keep asking questions - everyone will want to help - and follow your progress.

    B12 Deficiency is a very serious condition and can present similarly to being Hypo - so take a look at the link below then you will know more than your Doc. Just another piece of advice - never accept normal about a result - in range it may be - but WHERE in the range is so important. When you have more tests done as suggested by others - return and post the results with ranges in a new post for people to comment.

    Wishing you well sooooon :-)

  • Hi MollyMoo53, sorry to hear about your problems. I've had a fair few issues myself over the last 5 years and have a bursting file full of letters from all the GP, endocrinologists, heamotologists, diabetes specialists, gynaecologists, dermatologists, dentists and the 'it's all in your head brigade of psychiatrists and cognitive behavioural therapists, chronic fatigue specialists etc. I had to go off radar here for a while because I got so very disillusioned with it all sadly...

    But anyway, I know everybody can relate really. So after much disillusionment, I came across some vital information which tied everything together for me and I'm literally talking about head to toes issues...

    This person is DR. MORSE.

    He's a U.S. based natural medicine doctor with over 40 years experience in the field. He runs a practice and takes appointments but has also generously poured all his knowledge out over the last 40 years into over 300 one/two hour (FREE) youtube videos. Yes 300. I have learnt so much about my health problems from his case studies. This man is a blessing. Please look him up and hopefully it will resonate with you.

    Ok so having said all that, based on his teaching, this is what occurs to me from what you have written...sorry but it's looooong!

    It sounds your lymphatic system was and is clearly problematic. When the lymph system cannot drain properly through the 600+ lymph nodes in your body it backs up causing systemic acidic congestion in the body which can manifest anywhere (head to toe) This is why we are told to eat lots of plant based foods, to bring alkalinity into the body.

    Systemic lymphatic congestion points to a problem with your Kidney filtration and tiredness is most certainly your adrenals which sit on top of the kidneys anyway. It's also not in your mind about the left and right side of your body feel and look different as each kidney controls each side of your body and function independently (this is why a person can donate one kidney and still survive)

    One kidney is clearly functioning slightly better then the other. Again the swollen legs and feet sound like lymphedema - thats ymph fluid that isn't filtering and being drained by the nodes that becomes stuck in the body causing it to swell with fluid.

    Excessive sweat sounds like your body trying to release the acidic toxins through the skin (aka 'the third kidney') as the kidneys are not doing their job.

    And if the acidic lymph is backed up throughout your body then it will also be in your head causing inflammation and all associated brain processing symptoms and eye pressure problems (loss of sight related to lymph presure pushing on the optic nerve and causing vision impairment)

    Chemo is a very acidic and burning chemical so adding that into an already fiery mix that was going on in your body (acid mix into acidic fluids) has caused everything to explode with all the major symptoms over the last 15 years.

    This systemic problem will also compromise all your endocrine glands, adrenal, thyroid, parathyroid, pituitary causing more symptoms.

    When you took the herbs all those years ago, ironically, those original 'problems' sound like they were actually symptoms caused by the herbs starting to move the lymph in your body which couldn't drain away so appeared on your skin as itchy swellings and was causing all the fluid in your chest. The herbs sounded like they were actually doing a job much like stirring a jar full of silt and water. When the jar is shaken up, all hell can seem to break lose until everything settles. Or cleaning a cluttered house. Once you bring everything out from its hiding place it usually looks like a bomb has gone off and much worse until everything has been tidied up, which is a process.

    Anyway, sorry for the long post but I thought DR MORSE might be able to shed some light onto your problems...I've had enough of allopathic doctors and will take my health into my own hands as it can't be any worse then what I've experienced in theirs.

    Good luck honey ;)

  • Oh dear and that all started from a herbalist treatment.

    So sorry to hear all your terrible symptoms. Hope you get an answer soon and be on top of it all. You will find great support and good advice from the caring people on this forum which helps a lot.


  • Hi Molly, my heart goes out to you what an awful time you're having. The tender skin indicates B12 deficiency to me, as that was my first symptom, also tinnitis, diarrhoea, asthma, multiple allergies etc... Get your B12 checked, as others have suggested, also VitD. Many times I've felt that if I'd been a dog, I'd have been put to sleep before now.

    Don't give up, keep fighting for the help you need. MariLiz

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