Been to see an endo who I was referred to by my GP and a specialist I was recommended on here. Both independently say I have auto-immune thyroditis, CFS and a problem with my immune system.
On the one hand I am relieved that a diagnosis including thyroid issues has been stated, on the other the label of CFS fills me with trepidation. I had Glandular Fever as a teenager and have obvious signs of poor immunity. Should I be concerned about this or has anyone had a positive experience with solving some problems going down this route?
I must say my endo was actually very supportive and I liked him. He said I certainly had a thyroid problem and would be monitoring me. Positively he also said I should not stop taking my nutri supplements for the time being until a clearer picture was established. He wants me to see if I can reduce some symptoms with the help of an immunologist.
Can a multi-diagnosis be a positive thing? This is my question and concern. I am just afraid after all this time of being labelled. I am not depressed and when I research I see cognitive behaviour therapy as a possible management solution and I am filled with fear.
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soulchick1
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Beyond thyroid problems and the glandular fever, do you have other symptoms, as it is not uncommon for people to have a variety of autoimmune problems and for the thyroid to be in there somewhere, I have five things. Let me know and I will see if I can shed any light on it for you. As will others I am sure. MaryF
Hi Mary. Thank you for your response. I think what alerted them most apart from what I already stated is that I have had chickenpox 4 times and twice were in my 20s (post glandular fever). I have also been told chickenpox is in the same viral family as glandular fever so a possible link there. I have a lot of symptoms in general which I could go on about but most of all is the fatigue, sciatica (last year) and now many visits to physio for neck/back aches, dizziness/light-headedness, swollen tongue, weight gain, sometimes headaches, at times IBS like symptoms, frequent coughs/colds or hoarse voice and on and on.... The main thing is the tiredness though which leads to light headedness, sometimes it's like being drunk or on a boat when it's bad. Any common ground with me? Soul Chick
Well firstly autoimmune and gluten do not go together, I lost my IBS as soon as I stopped it. I have Hughes Syndrome, also Systemic Lupus, plus Sjogrens and also Psoriatic Arthropathy and a slow thyroid. Hughes Syndrome/APS, often have a history of glandular fever and also frequent migraines and at times miscarriages and often have relatives with similar, not saying it is that, but I am glad you have some medical detectives on the case, but Hughes Syndrome can at times be missed! Also Gluten intolerance can make you feel very very crappy. You may find out you have one thing or a mix of things, but they will probable do an ANA for Lupus I should think it may not show anything.. or it could have a speckled pattern result indicating mixed connective tissue disease, however it is typical with autoimmune for the thryoid to show up. MaryF
I have a feeling they are going to say I should cut down or cut out gluten because they asked about starchy food in my diet and I know what that means! I'm not 100% sure I know what all the different things you are talking about are like Hughes and Lupus. The thing about miscarriages does scare me because my periods can be very irregular and my Mum had 2 miscarriages (she has antibodies too) and my aunt is hypothyroid and she had miscarriages. I'm 29. Although right now I feel too tried to contemplate children I would like the possibility of a family in the future. SC
Hughes Syndrome, often families have a history of miscarriages and migraines and various other autoimmune diseases, or in some cases mini strokes or full strokes at an early age. If found and treated it prevents problems. A simple blood test which is cheap for the GP to do or the specialists plus a detailed family history will at times prove this to be the case: If you need more information please message me as I do administration on that patient forum and have access to the relevant links. MaryF
Thanks Mary. I appreciate the info. I have just done some preliminary research myself and to be honest I think I feel worse. It all sounds quite scary and I am so sorry to hear you are dealing with all these problems. I will ask when I get referred to the immunologist about these things. It is all so confusing as so much seems to cross over symptoms. I don't know how anyone diagnoses anything. It is so frustrating that it takes to visit specialists and private ends to get the ball rolling on this kind of thing....
If they are doing blood tests, make sure they factor it in. I have been much better since diagnosis than before! It does not mean you have that, but best to rule it out. MaryF
That is fine, if you need any more info just private message me, as myself or one of my colleagues can help give you info beyond the thryoid issues, which I am on this forum for! MaryF
I notice you mention the swollen tongue along with other general fatigue symptoms - have you had your B12 levels checked? - I ask as having had hypothyroidism for years I have recently had a B12 test and have been diagnosed with pernicous anemia - it is another autoimmune disease - they like to hunt in packs
the fatigue symptoms can be so many things - I hope thye sort it for you, but that and the swollen tongue make me think of B12 deficiency.
Thanks for your reply. I have had B12 at xmas. It came out at low 308 (200-910). I have seen on here that many people believe that is too low although within the 'normal' range. I think I'm at a stage where I'm sort of low or high within many ranges, which is why I think I'm not too well but still functioning i.e. working. I think anaemia would mean I would need to be lower in range - not sure? It's something I want to ask the immunologist about. Soul Chick
I am at 65 (range 197 to 898) so on the very low side but I do not have malformed red blood cells as I have always taken folate since the birth of my son 15 years ago.
for some people the lower end of the norm range is enought to impact their wellbeing. you can take B12 suppliments - there is a member here called hampster - they know everything there is to know about B12 and hoe other vitamin deficiencies affect your health - they might be able to help further.
This might sound like a silly question but what are you taking for your thyroid? Is it just supplements or a medication like Thyroxine or NDT? Whatever you are taking, is it enough? I ask because many of your symptoms sound just like hypothyroidism and I think we would agree on this site that it is often brushed aside in favour of something else, like CFS. Of course, I am not trying to play down what you have been told but would like to be sure for your sake, that the thyroid issue is being properly addressed.
Thanks for the reply. At the moment it's just supplements because I was not offered a referral when I was younger, however now I have had this referral I feel I have been given another opportunity to get properly sorted. I am so relieved that the initial thyroditis diagnosis is now properly on record.
As you say I am also concerned about the thyroid issue and it's a confusing situation. The endo said because the supplements were 'masking' my true thyroid results he wanted to see if I could get some of the other symptoms reduced if possible to try to wean me off the supplements and at that point perhaps see if I needed thyroxine or other treatment. He wasn't ruling this out. He said he was concerned about over medicating me.
I am confused as it is very hard to deduce what is due to what. I am quite keen to see the immunologist as I think he will test for other nasty auto-immune diseases and other issues such as allergies which could be making things worse. Although I am concerned about getting fobbed off. I have been very up and down over the last 8 years. Is this hashimotos or auto-immune response such as CFS? Does it matter what the label is? These are the questions in my head.... I also am extremely concerned as I have seen cognitive behavioural therapy and other therapies where patients learn to 'accept' their symptoms as part of CFS treatment.
Maybe I need to just go to the specialist with an open mind see what test results are and then weigh up the options. All these thoughts and learning all these things is also making me feel unwell!!!
Nothing wrong with a long reply. (Some people never actually bother, which is very annoying).
I hate to sound sceptical but wonder if you could ask for the results of your thyroid tests and post them here. You need to ask for reference ranges of each, as labs vary. All your symptoms listed sound exactly like low thyroid. What do others think? It might be interesting for you to read a book by the late wonderful Dr Skinner, called "Diagnosis and Management of Hypothyroidism". You will recognise most of your symptoms there and believe it or not, it is a very amusing book. He was a true fighter for the truth surrounding thyroid issues.
One thing the endo said was that it was unusual to have this big a fluctuation in TSH and said it maybe because of the nutri supplements I'm taking, saying that they won't have a standardised amount of the nutrients in them.
Thank you for the advice on the book. I will look into it. At the moment I am thinking it is worthwhile taking the tests for other auto-immune diseases/syndromes. Having read up on some the things MaryF told me I've realised how serious this could be and I recognise a lot of symptoms in me and family history may be a factor. Because of my age (29) I'm thinking I need to check whether there's a question mark over fertility. (This scares me so much but I actually had a conversation with my Mum today about the possibility of freezing eggs). What do you think?
If you have Auto-immune Thyroiditis as stated by the two specialists - then the sooner you start treatment for the thyroid the better. I spent my life battling illness until I was diagnosed with Hashimotos in 2005 at 59. My GP here in Crete started me on a low dose to support the thyroid whilst under attack from anti-bodies.
Good site - Izabella Wentz has written a book - Hashimotos - The Root Cause - and has a website where you can sign up for a Newsletter and learn more. Another good book is - Hope for Hashimotos - by Dr Alexander Haskell - also a website. You learn so much from others. My anti-bodies are still high but my health is so much better.
I was diagnosed with Crohns over 40 years ago and preceding that had Ileo-caecal TB - was also diagnosed with Fibromyalgia which also goes by the name of CFS. Most auto-immune conditions start with the gut - think I am an example of that So healing the gut is SO important and going gluten free is a start....
Once on good treatment CBT will be the furthest from your mind - so please do not worry. Low thyroid hormones can be blamed for so much....
Thank you for your reply Marz, I appreciate the advice. Are you saying you were given thyroxine when you had antibodies only? The problem I have is that this time round my TSH was confusingly low, I've never known it this low. Endo said with taking nutria thyroid it's hard to know where my levels lie and he doesn't want to over-medicate and I'm aware there's nasty side effects to this.
Gluten free is certainly something a few people have suggested and something I have been thinking about. I do get stomach issues especially if I get stressed or go through an especially unwell phase. However my Mum said to me until I get the next round of tests (which is soon) I should maybe stick to the same diet as normal as I think they will be testing for allergies as well as other auto-immune problems. What do you think? Do you have to be completely gluten free or if you cut down and just have occasional treats is this ok? I want to get better but when there's not much fun going on in your life it feels like a really bitter pill to remove one of the remaining pleasures - does that make sense? Soul Chick
PS thanks for those websites. I briefly looked at the Isabella Wentz one and it's very interesting. It does sound a lot like me. What a confusing process.... I have come up against so much more info than I was expecting in the past couple of weeks since I joined that my head's all over the place. Thank goodness for the Easter holiday!
You are right - it is so confusing - but you sound a bright girl and will soon pick it up. I am still learning - hence I stay with this forum even though I feel much better. It is an on going process and new research keeps cropping up and learning from others is a good way too.
The above testing is private and new from America. The Gluten Sensitivity Tests are far MORE thorough than in the UK. You do not need to be a full blown coeliac - just being sensitive is enough to make you poorly. You could check with them as to what you should and should not eat. Again Allergy Testing is only a guide.
Also take a look at vitamindcouncil.org which is also so helpful. VitD is very involved in auto-immunity and is anti-inflammatory. Each cell has a nucleus and each one has a VitD receptor which is involved in DNA too.....Dr Michael Holick has written a book - The Vitamin D Solution - there is also a website. Research is taking place here in Crete at the University - about VitD and Hashimotos, Posted by Helvella about two weeks ago.... I have a sneaking suspicion your D maybe low...
Yes I was prescribed T4 with the Anti-bodies and in range TFT's - Thyroid Function Tests. Remember I live in Crete so things are slightly different.
Yes thank you. Very interesting. Vit D is one I am being tested for in this round of tests so I will find out. My GP actually said I might be deficient and then didn't test for it!! But anyway now it's getting done so that's good. I'm trying to tread the line between arming myself with info for the next appointments and scaring myself stupid with all the possibilities and 'what ifs' at the moment!
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