I have thought carefully about this issue, and have decide to share my thoughts in case it helps someone else. Apologies if this seems a bit rambly, but to me it just goes to show how seemingly random events can sometimes end up being connected. And, because I was focussing on one symptom list, that of Hypothyroidism, I never looked at other conditions with overlapping symptoms.
I went to my GP yesterday because I have been flattened by (yet another) virus for over a fortnight and needed her to check my wheezing chest. I cough all the time and get loads of infections.
I asked what kind of Hypothyroidism I had been originally diagnosed with, did she know if it was autoimmune, or what? - she did not know and did not manage to find it in my notes.
I then asked about the raised inflammatory markers found when I had been sent to the specialist ME clinic ( and so many of us will have been down that road after complaining about unresolved fatigue). The Rheumatologist was considering Lupus but the GP refused a trial of meds because she said I didn't have it. That was 3 years ago.
Since then I have been having increasing difficulties with my eyes and am hardly ever away from the Ophthalmologist, I should have shares in eye drops. Lots of problems with my teeth breaking easily, so rising expenses at the dentist. My skin gets dry and rough and and I am prone to breakouts on my face. Parts of my neck felt tender. I have trouble swallowing anything dry and choke easily. I have crippling fatigue and no concentration. Do these sound like familiar Thyroid symptoms to you?
Last summer it was pointed out to me that I was putting away large amounts of fluid - I hadn't even noticed, I just knew I was continually thirsty, and got through about 8 pints of fluid a day, mostly water - so was tested for diabetes in Sept, negative. Then had Bronchitis again over the winter, and was treated for two e-coli infections earlier this year.
Quite by chance, someone at our local Thyroid support group mentioned Sjogren's Syndrome as being quite a common thing for folk with Hypothyroidism - I had never heard of it - but found out that some key features of this autoimmune disease are dry mouth, eyes, skin, extreme fatigue, tooth decay, digestive problems, frequent sinus and chest infections, brain fog, joint pain...it goes on but you get the picture.
I put all this to my GP and she at once went back to the ME letter - Sjogren's had also been referred to. Well,thanks for telling me! She agreed with my suggestion to go to the Sjogren's Support Group this Saturday coming and find out more, but we both think it is very likely that this could be a key part of my symptom picture. I thanked her for her willingness to work with me on this and everything else. She has no problem with me taking responsibility for my health. There is no cure, so I need to find out as much as possible about how to manage it.
This is where I am slowly getting to the point - previously I had only ever thought in terms of my Thyroid being to blame for all my ills and was very angry about all the labels dished out to me (Fibromyalgia, CFS, Bipolar), but it seems I was very wrong. So many of these symptoms are the same as Sjogren's, and I had kept my focus too narrow. The only thing I have in my defence is that although this is the UK's 2nd most common autoimmune (rheumatic) disease, it is just not diagnosed or generally known about. And guess what? More than 1 in 10 sufferers are women in middle age...
This has really given me pause for thought.
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Hiphypo
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Good post, thank you. I have an ME/CFS diagnosis - but no other diagnosis. My T3 has been in and out of range, and I've struggled with many 'hypothyroid type ' symptoms over the years, but I notice from reading around that T3 can also be lowered due to long term illness, depression, progesterone being low etc. Thanks to this site, I also asked for my iron to be checked and it came in really low, only just in range. I have had a course of iron and feel better for it. So, as far as pushing for a further diagnosis, I realise I need to keep an open mind, whilst at the same time pushing forward with tests etc. Thanks to this site and members posting here, I was able to ask my doc if thyroid antibodies had been checked, so now I am waiting to see the results - I know that so many of us have a battle on our hands getting the tests etc and the right diagnosis - I hope this means that you are better able to manage your condition and get the right help for the right issue - well done for persisting
"Lots of problems with my teeth breaking easily, so rising expenses at the dentist. My skin gets dry and rough and and I am prone to breakouts on my face. Parts of my neck felt tender. I have trouble swallowing anything dry and choke easily. I have crippling fatigue and no concentration. Do these sound like familiar Thyroid symptoms to you?"
I don't know if this question was real or ironical, but yes, they do sound like thyroid symptoms to me. I've had them all. I have hardly any teeth left. They've just crumbled away. At time my skin would do credit to a crocodile. I can choke on my own saliva. Yup, I would say those are all thyroid, yes.
Is there any sort of test for Sjogren's Syndrome? Don't forget, it is a syndrome, i.e. a buch of unexplained symptoms, just like Fibro and CFS. I don't profess to know anything about it (but I'll have a look) but seems to me those sympotms could be caused by low thyroid hormones. Why not? Low thyroid hormones can cause just about everything and anything.
I take your point, and this is why I have asked to find out about what type of Hypothyroidism I have.
As far as I know at present - I hope to have more info after Saturday - it can be an autoimmune disease which causes inflammation of the glands producing things such as saliva, tears and mucous.
Or it can come in later on with Lupus, RA and the like. Or it can just happen to you. some people seemingly only have fatigue, nothing else and get missed. I have already had corneal ulcers, and some people lose their sight. It can affect kidneys and there is an increased likelihood of developing Lymphoma and - i may be wrong - neuropathy?
I do agree that the Thyroid affects every bit of us, but I would be remiss if I didn't keep an open mind.
Just as long as you don't lose sight of your thyroid treatment whilst running after this new diagnosis. That's the thing that always worries me when people start talking about CFS, fibro, etc, things that have no treatment, just 'managment' of symptoms. Whatever else you might find you have, you do know that you have hypothyroidism and neglecting it could only make you worse.
Absolutely, I completely agree - I feel the Thyroid is such an over-riding thing for me, I would never ever take my eye off that ball, I just couldn't. I have begun to improve energy-wise since going over to T3 only, so I don't accept that I have CFS - or Fibro, either, and actually feel sure that they are Thyroid symptoms. I wonder if the corneal ulcers are also a direct result of being Hypo? No idea.
Thank you for your concern I appreciate your input
I made the mistake of querying adrenals when I first went to an Endo - and lived to regret it. He insisted on doing a blood test there and then 'to prove to me that it was nonsense'. Of course it came back showing nothing and I felt battered after that encounter and have no wish to expose myself to that again.
The ME clinic told me that all they could offer was a graded return to exercise and a 10 week course to learn to pace myself. Both backfired badly and set me right back for a year or more.
Well, of course, you were right to query adrenals and the endo was wrong to sniff at the idea. But they just don't know about these things. I suppose he did a blood test? So many things can go wrong with that, that it's really not reliable and proves nothing. But the chances of him knowing anything about it are so low.
As for the ME clinic, what a load of rubbish! Don't they think you're capable of pacing yourself on your own? Rediculous!
It's a long hard road, sprinkled with doctors that know nothing. I didn't get anywhere until I found Dr D in Paris. He took one look at me, as I slouched into his surgery, and said: Madame, your thyroid is dead and your adrenals are about to join it! Turned out they weren't quite as bad as that, but bad enough. I do hope you manage to find a doctor who can 'see' what is wrong.
Yes he did a blood test, which is how he could put me in my place.
And my GP told me that the ME clinic was rubbish - I had to jump through the hoops for other reasons, or I wouldn't have bothered going. I know what it looks like - my late Father suffered with it for the last 8 years of his life.
Very pleased for you that you were spotted so well - it was my GP who took one look at me and said, we need to do blood tests, you look Thyroidy. And I was - TSH of 84...
Now I am seeing Dr S in Glasgow, and my GP is working with him - at least for the time being. So I am fairly hopeful of a positive outcome.
Thanks again for taking the time to come back to me.
The idea that thyroid is always the cause is all too easy to fall into.
I keep pinching myself and trying to think what else needs to be considered - but, inevitably, the one thing we have in common is thyroid so anything else will tend to get ignored.
HipSjorgen's doesn't quite have the same ring to it, does it. <(")
Yes, but you have to agree that the thyroid is the cause nine times out of ten. Directly or indirectly. And it just seems to me more sensible to get the thyroid sorted out first and then seeing what's left.
Thanks Rod - maybe you will have a suggestion? Answers, on a postcard...!!!
Hiphypo, thanks for the blog. I deliberately try to keep things simple because 'I don't want to go there!!
But it is apparently true that if you have one autoimmune disorder you are likely to get more...dont even like typing that.
Every day for months have meant to measure how much liquid I drink and it is a lot. When have mentioned (by way of apology for comprehension delay in local shops)'dont mind me I feel a little wobbly' some older women have said 'you look dehydrated'. i do have those symptoms but not all those awful infections, poor you.
Have some blood tests coming back in dribs and drabs....what with redoes..insufficient blood for the particular test and some being sent to another Labs it is taking a month! What has come back look OK except for overdosing on B12!
Now that is a ramble...your blog is well thought out...wishing you well, wyn
That's interesting about the immune disorders - didn't know that.
Being dehydrated is horrid - I feel really unwell if I don't drink enough, very unpleasant.
I only measured what I drank because family got concerned. I did it simply by measuring how much it took to fill a big water jug and then seeing how much I got through in a day.
Also, took the mugs and glass I used most often, filled them and then poured that into a measuring jug. Then it was simple to just log how much I was going through in a day. I also wake up thirsty in the night, which is a pain because 3 hours later I need the loo...can't win, can we!
Hope you get to grips with your tests, best wishes,
It is interesting about immune disorders, I have felt for years that I wasnt feeling right and came to the convlusion that I had some sort of autoimmune problem. Somehow or another Sjorgens and Lupus just didnt quite fit with my symptoms then lo and behold turns out to be Graves so I suppose I was on the right track all along. I was tested years ago for an underactive thyroid and i remember the doctor saying that I wasnt under that I was actually borderline over! Dont I wish I had followed that one up. The trouble I found was that my symptoms always seemed to be so varied that I always felt like a real hypochondriac. Like we all know thyroid problems affect so much of the body. I find it very sad that so many people are having such a hard time getting anywhere.
'Interesting' is not a comforting word, somehow, in this context, but I do see what you mean. I can empathise with being worried at what was in my record and always afraid I would be written off as a time-waster
. And yes, it is jolly hard work and sometimes I just can't take it all in no matter how many times I read it over, and other times I just lose all memory of it. Greasy pole stuff, but giving up is not an option, is it. This is such a great site and I don't know what I would have done without it
Thank you so much, that is really helpful - and explains the crushing fatigue a bit better.
I am so ignorant - can you tell me what Behets is?
As Rod said it can become a default position to just blame the Thyroid, but also agree with Greygoose that I need to keep it firmly in my sights - I have trailed down so many paths but I do feel I am starting to get nearer a proper explanation at last. Fingers crossed.
Reading your post has given me hope and courage ,thank you, it could have been written by me! all the symptoms etc the same.
I am due to see my GP next week, and really need the courage it's always a very stressful event for me, as invariably i am told "you fat, loose weight," memory problems down to stress, throat and tongue problems "there is nothing wrong with you" .
I am going armed with information that I have found. I have got it down to hypothyroid (take 100msgs for 20yrs) , Sjorens syndrome, and pernicious anaemai with vit B12 deficiency.......as I also have peripheral neuropathy....and a list of blood tests that I would like done......with also antibodies etc.....so next week I hope to be able to post the results of a successful visit to my GP. thanks again for very good post.
Glad to give some encouragement, hope it goes well and you find the courage you need. It is your health, after all, and no one else will have quite the same interest as you do. so yes, information, information, information. Looking forward to reading of a positive outcome, good luck
Mary 52 when diagnosed, 33 years ago, I had antibodies so I am Hashi/autoimmune. Last year I had 2 blood tests with thyroid antibodies and I have none! As you have been on medication for many years this COULD be the case for you too.......
Right, somewhat relieved that I do not fit that profile - but a friend who has Lupus, on top of long-term RA, gets very nasty ulcers in her nose and throat - horrible. Having just spent 10 days with a virus that felt as though I was breathing in shards of glass, I have increased respect for her suffering.
Agree about getting the proper diagnosis, sad that we have to do so much - at least we can do the research and learn it, but sorry for those who are too ill to do it for themselves and slowly decline. thank God for the wonderful people on this site.
What a wonderful blog I absolutely agree that many of us are blaming our thyroid condition for symptoms that actually are down to other conditions.
I have blamed my life long constipation on thyroid and actually it is due to likely coeliac (anti endomysial anti bodies are positive although every other test, 15 in total, are normal in the gluten sensitivity blood panel)
I blamed my fatigue and immense lack of concentration on thyroid it was low B12. A very good consultant in London referred to it as auto immune B12 deficiency and she was the only person who actually acknowledged auto immune illness as a condition of it's own and indicated that it would 'challenge' the body!
I had very tender shoulders and a bad neck, through private health care had an MRI, this showed 3 bulging discs in my neck. I then apportioned all the problems to the bulging disks. it was only when the B12 was resolved with a 6 week trial of injections that the neck and shoulder pain disappeared.
Last year my T3 only just wasn't hitting the spot, there had been a gradual decline 12 to 18 months after I started T3 only in September 2009. I nearly caused a thyroid storm by increasing to 60mcg daily, only 10 mcg more than I am formally prescribed. I could have died if I had continued!!!!!!!! It would seem that the underlying cause was chronic food intolerances! I now manage well on 40 mcg daily and I have NO thyroid function at all, proven by a technetium scan last November.
The more I read the more convinced I am that our health is relative to the state of our GUT. This is all health conditions, not just thyroid. However I do believe it is imperative to have a healthy gut with auto immune illness of any kind, 80% of the immune system resides in the gut. So many processes occur in the gut, hormone synthesis, B vitamin production, the gut is dependant on Vit D for a healthy mucosal lining. An unhealthy gut can release toxins into the blood through the gut wall, causing toxicity within the entire body......could this be the exacerbation of our poor adrenals??????? An unhealthy gut will cause liver congestion, this then affects the gall bladder and so it goes on.......
It is a HUGE dot to dot and sadly most main stream medics either do not want to join the dots or are not capable. I feel they fall badly short of their duty of care when they do not investigate other avenues when our thyroid levels are 'NORMAL', especially when they are an optimal normal. We as patients are struggling so much that we sit like a stunned rabbit when they announce the NORMAL!
It has taken me 12/13 years of being under par to reach this conclusion and even knowing this I am choosing to stay away from the frustration that is created by the constant battle to get what we deserve, we do need to know every thing possible about our condition and know exactly how to present it and counter their 'stone walling'. Even with the knowledge I have gained I get nowhere when I take my 17 year old daughter who is treading the exact same path as I trod..... I am now using my own knowledge, wisdom and creativity to work with her and hopefully find her good health........
I hope this has given more food for thought......perhaps I should put it up as a blog??? I have been very quiet on the site for some months....maybe it is time......
What a brilliant reply - thank you so much. You have been down a long road and had to be tenacious, like many of us I guess, who are left to struggle with inadequately informed health care people. You must have been very pleased to get through it all and survive - a Thyroid Storm is so dangerous. I am just raising mine to 80 from 60, and am finding I need to be careful as the shakes started up; so it's was back down to 60 for a while, then trying agin, this time by splitting the dose. Fingers crossed.
I can see just how the jigsaw pieces can be put into place - but sometimes only if it is in the right sequence. It seems the order of events can matter quite a bit. And I can really identify with the journey such as yours, when as one bit falls into place, there is a "Ha ha!" moment. Followed sometime later by, "Oh wait a minute, things still aren't right - now what do I do?" and having to pick yourself up and start the hard graft of trying to research anew.
I am so impressed by the consultant who saw you in London, we need lots more like that who actully practise medicine properly - maybe you could pm the details to an admin to add to the recommended list? And I do agree that our Gut is very important, vital even, in all of this - after all, it counts as our second brain too! It makes so much sense - something else I will have to strat educating myself about when I've got my strength back. A step at a time, we'll get there.
Hi Jenni, only just seen your reply as you didn't use the 'reply to this' button! So no email alert.....
I truly believe that the health of the Gut is the hinging pin for everything....I do wonder if my gut issues had been picked up as a child or even teenager if I may have avoided the thyroid illness......who knows.
However, I have said for many years that the hashimotos/hypothyroid, for me, is not the primary condition it was the only thing that presented for the medics to diagnose.
I am so much better for the changes in diet...just the fine tuning to go, which does seem to be quite tricky LOL!
Hiphypo, thanks so much for this I have all of these symptoms and more and actually thought I was going nuts, I get the feeling my doc thinks I'm a hypocondriact when ever I see her about a new ailment I have been putting it together for a while now but all I get from her is no its just your age(55) I nearly fell of my seat when she told me that I was so disgusted I felt that I was wasting my time even going to see her, now I am def going to ask for a referral to a specialist. thanks again
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