I was diagnosed with Sjogrens syndrome many years ago.
I take Plaquenil 200mg. I have been taking it for a good 10 years.
4 years ago I was diagnosed with hypothyroidism.
I take Levothyroxine 125mg.
It took two years for my blood tests to normalise.
However I have not felt any better since I was diagnosed.
I have severe fibromyalgia to the point I am struggling with the pain.
My head and neck hurts constantly.
I have constant episodes as I call them, of feeling extremely cold which change within minutes to extreme feeling hot and flushed which make me feel panicky.
I have dizzy spells, which gives me the feeling of having vertigo. The room spinning it makes me feel sick.
I am now getting very bad lower back pain, which continues in to my hips when sitting I struggle to get up it is very painful.
I have other very strange symptoms that occur randomly, itching all over and very dry skin.
I am now getting circulation problems and the feeling of not getting enough oxygen to my brain as my head feels foggy and I have memory lapses.
My body feels like it is failing.
I would be so thankful just to be pain free and be able to take on the simplest of tasks without struggling.
I have tried no end of alternative remedies and purchased a sad lamp, water filters even cutting out toothpaste with fluoride.
My GP checks my blood but always comes back saying it is normal as in my Thyroxine medication is the correct level that 125mg.
I haven't ever seen an Endocrinologist doctor as my GP has always said there is no need to however I am now at the point where I am going to insist on seeing one privately.
I cannot go on suffering the way I do.
I do believe the Thyroxine is not helping me.
Many a time I have wished I would die.
I get very depressed from being in constant pain and becoming frustrated that I do not have the energy or strength to tackle the easiest of tasks.
Just cleaning my teeth or having a shower exhausts me.
I used to be a healthy active independant person until in 1992 I started to get ulcers on my eyes I was told to use viscose tears eye drops then it was down hill from there.
A private rheumatologist diagnosed me in 2002 with having Sjogrens syndrome, connective tissue disorder and abnormal blood vessels.
It took 10 years after many tests to get that diagnosis as several GP's said it was chronic fatigue syndrome, in those days doctors more or less were saying it was all the mind.
Then in 2009 I was diagnosed with hypothyroidism.
However since being on the meds Levothyroxine 125mg I have gone down hill in constant pain and very random unusual symptoms.
One symptom that really baffles me is how randomly just before I go off to sleep it feels like my bed is shaking.
My body feels just like it is packing up.
The GP's I have see use statements like "it is all I can do to keep you alive" or just put it down to my clinical conditions.
Since seeing all the information concerning Thyroid change and Thyroid international and Thyroid UK.
I realize there is something very wrong the way doctors just rely on their textbooks and do not follow up on their training.
People should be treated as individual people and rely on their symptoms not from a medical textbooks.
I notice that Levothyroxine has lactoluse and glucose in them it is possible that I could be intolerant to the ingredients.
I cannot go on much longer the way I feel.
Every day is such a struggle.
Just to be pain free and be able to handle the simplest of tasks would be wonderful to be able to get through life and enjoy each day.
I filled in my medical history on the Thyroid UK Health unlocked site and too see all my symptoms written down and listed are numerous.
I fear the problem with clinical autoimmune diseases the symptoms can mimic so many other illnesses nevertheless people know their own bodies and doctors should listen.
It doesn't bare thinking about.
How many people many years ago were placed in mental homes for being labelled mentally ill or having dementia when they may have only had hypothyroidism.
If I had the choice I would sooner take a natural remedy rather than a synthetic substance that has chemicals in it or go to seek help from an alternative therapist than any doctor that will not listen to the patient or because their medical training is guided by a medical text book.
I was diagnosed with hypothyroidism in June 2008.
Two months before then I began losing my hair and gained weight around my stomach and back. (I had been constantly going to the doctors prior to that as I was getting reoccurring urine infections. I was tested for menapause and found to be in perimenapause.) My speech became slurred. I could not concentrate or focus on anything my head felt heavy, my hearing was dull and my vision cloudy. I felt like my body was breaking down. I would have really bad sweats with a strong odour that I could only identify as an onion smell. I had recurring urine infections, severe head and facial pain which still comes and goes but since I have cut out tea and coffee and sugar my head pains are not as often. My pain threshold went out the window.
I had many private consultant investigations and scans done. The neurologist suggested amitriptaline which I refused to take. As my doctor had prescribed antidepressants prior to that which I reject taking as my blood pressure is always very low after trying them I could not function at all. The neurologist recommended I try a mouth guard. I could not get on with it my face hurt more with it.
I cope from day to day. Two days out of a week I generally have what I call a good day however that is when I will set about doing menial tasks that then set me back to being in pain. I have what I call episodes of severe pain in my muscles I often feel very cold shivery as fast as that occurs I can then fell very hot and panicky my face and my chest and neck area goes bright red. I do have bouts of depression with mixtures of feeling frustrated and aggitated. I have tried many self help things very light yoga, walking on flat level ground, swimming, of all I find relaxing in the sun shine sunlight but not direct energises me the most.
I do take multi vitamins and vitamin D vitabiotic brand. I take slavesterol capsules. I have stopped using flouride toothpaste and I have fitted filteration mechanism to my shower I drink filtered water. But I really don't think anything helps me at all. I take thyroxine 125mg.
Once I was diagnosed with hypothyroidism it took 3 years before the blood tests stabilised however I believe I go from being hypo to hyper.
During that time I did encounter the loss of mother that was very upsetting and did effect me badly and also for the past 6 years still not yet resolved I have had to cope with a new badly defective house which is a litigation court case. So I have had alot of stress to deal with. I was also evacuated from Libya where my husband works.
Prior to being diagnosed with hypothyroidism I have been taking Plaquenil because of having Sjogrens syndrome, connective tissue disorder with abnormal blood vessels and fybromyalgia it was quite a set back for me health wise as it took along time to be dianosed with my other clinical illnesses. I cannot say I have ever felt well for the past 20 years.
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Kezzerb
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So that we can get some idea of where you are,do you by any chance have your blood test results? I doubt they are going to be that helpful, but it might show something.
If you have not got them, maybe that would be the first step?
Also, have you been checked for the simple things - vitamin B12, folates, iron/ferritin.
I certainly hope that we can help you to improve things.
Thank you Rod I have never been shown any of my blood results. I have either been told over the phone raise the level of medication or remain on the level I am taking.
I am waiting for a private appointment to see a endocrinologist in Leomington spa Dr B recommended by Jackie on here. I will be ringing my doctor tomorrow to double check if the GP has made contact with the endocrinologist yet.
Thank you for for reading my blog and your concern.
I'm so sorry for all your suffering and glad you found this site. I too see the same lady in Leamington - she is wonderful and if anybody can start you on the road to recovery, she will. She will listen to you and get your GP to do the right tests (my GP refused everything I asked for and she told him in the nicest possible way to do them all and more besides). She is very knowledgable on everything to do with the thyroid, including all the different medications that might help you, and is much more open minded than most GPs.
It might take a long time to find out what is right for you, but you have taken the first steps by talking on the forum and contacting Dr B. You will also get lots of valuable help and support from the lovely people on here - so good luck on your journey and let us know how you get on.
So glad you have found this site Kerry. There are some people who like you have spent years seeing specialists and eventually found the right person or the key to the problem and got back their lives. Some have also had to try more than one on the recommended list of specialists you have been sent too but the journey has helped to piece the pieces of the jigsaw together - so don't give up.
Looking at your posts you are on the steps towards achieving this and many people on here will help you as Rod says. Couldn't agree more with getting the levels of B12nd folates etc checked too as they can contribute to many of the symptoms. Are you going to see Dr B? I don't have personal experience but have heard good reports.
Wishing you all the best and let us know how you are getting on.
Take care and keep up the hope - it can be sorted xxx
Thank you so much for your concern and kind words.
I am waiting for appointment to see Dr. BI will be double checking with GP tomorrow to see if he has got on with referring me.
He didn't sound very happy when I spoke with hm on the phone a bit frosty. I guess a few GP's will be twitching now with all the awareness being raised.
I will keep everyone informed of things are going and I hope and pray Dr. B can help me and I can get my life back but at most get rid of the pain and dizziness.
I am in full support of you all on this site and hope we can all bring about change.
Thank you Rod I have never been shown any of my blood results. I have either been told over the phone raise the level of medication or remain on the level I am taking.
I am waiting for a private appointment to see a endocrinologist in Leomington spa Dr B recommended by Jackie on here. I will be ringing my doctor tomorrow to double check if the GP has made contact with the endocrinologist yet.
Thank you for for reading my blog and your concern.
It tells you about getting access to your medical records (of which blood tests are a part).
I really hope the doctor helps.
If when replying you click on "Reply to this", the person gets an email to inform them. Otherwise it is a matter of the person looking back and seeing. This is NOT a complaint - simply so that you know and understand.
I'm new to this but I'm not sure if I did it correctly when replying to Rod.
Thank you for the information thinking about it I could ask my solicitor for them I had to pay for them to be released because of my ongoing court case.
Nevertheless I will look at the link thank you.
I just wanted to say I admire you and all who set this site up you do wonderful work thank you.
Hi kezzerb - I have edited you blog to change your doc's name to Dr B as we aren't allowed to mention the names of doctors on here. We don't want the good ones to get into trouble.
I have met several people at our Bristol support group who have been diagnosed with "fibromyalgia", who have regained their health on T3 or NDT.
It would be very helpful to see your past results.
Dear Clare bear. Can you tell me about support group in Bristol. Who this Dr B is and whether there are any good doctors in Bristol area who can help with ? Hypo
Just to add that dizziness and vertigo were some of my worst symptoms and they didn't improve on thyroxine. I am now on NDT and those horrible symptoms have gone Hopefully yours will too xx
No I didn't get blurred vision but I did get dark vision where everything takes on a dark yellowish tinge. I still get It if i am under-medicated (still raising dose to optimal level). Xx
Hi Kerry. I'm sorry you are having such a hard time with this
I did get slightly blurred vision (and also vertigo). I didn't really notice the blurred vision much but always felt the my glasses prescription wasn't quite right. Once I got on the right medication I felt like I was seeing everything in High Definition for the first time instead of fuzzy-o-vision.
There is hope. I am feeling much better due to different thyroid meds and getting my vitamins and minerals up, especially vitamins D and B12.
Kezzarb I got blurred bleary vision and a lovely shimmering blob which sometimes appears at the lower part of my right eye. I thought I had sjogrens, but just used to suffer from a very dry mouth and had great difficulty swallowing, ampng other lovely symptoms, acute anxiety amongst them. Besides getting your test results, which your doctor has to give you under the DAta Protection Act, and posting them on here. I suggest you read Dr Barry Durrant Peatfield's book Your Thyroid and How to Keep it Healthy. Although it may be difficult when your brain is foggy and you are feeling like death, you need to educate yourself about this disease. There is a 24 hour urine test that shows clearly what the hormones are doing in your body. There are a substantial amount of people who do not do well on T4 only and recover taking T3, the active hormone, or natural desiccated thyroid (NDT). You will find the average GP, however well meaning knows very little about how to treat the disease, and most endocrinologists are not much better. The proof is that if you were being correctly treated you would have recovered your health.
After suffering for years with terrible monthly probs as well as my hair falling out being cold all the time sleeping for england. And seeing 5 different dr's i finally got refered to an endocrinologist. Who was worse than. uesless. I actually found out that most endo's are actually knowledgeable about diabetes. Which is an outrage, how can they possibly make life changing decisions about our health when they havent even studied about thyroid problems.
After 18mnths on T4 i still felt dreadful, i had swollen joints slurred speach and hearing probs. I was actually diagnosed with OAD obscure auditry disfunction. And now fibromyalgia, i asked the endo if i cld try T3 and after about 3 days felt like a differnt person.
My body then started to reject the T3 T4, i waited over a year but finally the endo let me try Armour Thyroid 2grain T3 T4 combo.
Feel so much better now, just living with the daily pain frm the fibro. At times i have to also take up to 150mg of Tramadol.
I also take 1,500 mg of an amino acid tab called D L P A its for chronic long time pain. It gives me energy and lifts your mood.
I try to look on the bright side if poss and steer clear of toxic people in my life.
Levothyroxine (don't think there is a Lovothyroxine, is there?) is T4. T4 is the storage hormone and is converted in the body into T3, which is the active version. But if you are unable to convert, it is possible to take synthetic T3.
Sorry Levothyroxine spelt wrong my vision and concentration isnt that good infact too much computer doesn't help thank you anyway. I do think the Levothyroxine is not helping me I also think that the ingredients could be effecting me I noticed they have lactaloze and glucose in them.
No T4 is levothyroxine -which is what you are taking. It is a storage hormone, that has to be converted into T3, which is the active hormone that is needed by every cell in your body to work properly. Some people are unable to process the T4 and convert it into the active T3. These people generally do better on T3 or NDT (natural desiccated pig thyroid which contains T4 and T3). The endo you are seeing I think prescribes both of these alternatives to thyroxine xx
Thank you I have the gist of that now. I am worried because I have been going down hill for over a year now. If my body is not converting as you say can it cause serrious damage going so long undetected. Can it be repaired.
The human body has amazing capabilities to repair itself with the right treatment. I was a complete mess and thought I could never get better after so long without a diagnosis and the poor treatment. It all resolved - so the answer is - yes it can and does happen.
There is so much one could say to you, but we don't want to overwhelm you with info at this stage, do we. lol As Rod says, first step is to get your blood tests results. It's very important to know exactly what they are as 'normal' is a programme on a washing machine, it has nothing to do with a person's hormonal status!
Hang on in there, you're not alone, and there are lots of people here that can help.
Thank you grey for your kind words hopefully I will get to see Dr B soon. Tomorrow would be soon enough. I need to get off of here now heads not good computer makes things worse.
Nite nite all sorry I need to get off now computer says not good for me. I enjoyed chatting to you all thank you for your kind words and concern so happy to meet you all.
Bless you, and I thought I had problems. This website will help you all it can, they give great advice, it sounds as if there is something underline going on, so very important to ask your GP for a full Blood tests, just to elimate things. I wish you the very best and hope you get the help you need - don,t give up, this is your life, bang on every door possible to get your health sorted.. take care. Kath x
Thank you for your kind words and words of encouragement. I will be seeing private endocrinologist soon. It is encouraging to read how people are recovering however it is not good how many people have to struggle and come up against brick walls. Thank goodness for this site they do a wonderful job.
Today I telephoned the doctors surgery and inquired if the GP had done the referral yet to see Dr B. thank fully it was sent off yesterday. Hopefully I should hear back soon. I also requested that the surgery email me my blood test results from December. Hope you are all having a good day.
On another note I have switched to Lacto free milk and lacto free butter. Switching to gluten free foods but it won't be easy as there isn't much out there. I suppose baking yourself is best. I will give it a go.
Well I have read through all of the above and agree with others.
What did strike me is that a lot of the symptoms you have reminded me of mine in the last 5 years which had a lot to do with me going through the menopause early probably triggered by the removal of my thyroid 2 yrs earlier.
I also have had Mineres Disease for years now which upsets the balance of the inner ear and makes me feel very dizzy and sick and I cant bear to have my eyes open but go and lay down in the dark or under the duvet.
I have not gone gluten free I do make my own bread and avoid processed foods making things from scratch is better for me.
I hope that finding this site is the beginning of the way back for you as it has been for so many of us. When you get your results check that the surgery has put the reference range for each test on as the results need to be assessed in the context of where they are in the range. My surgery never does, apparently they don't know them!
Hi, I have suffered so many of your symptoms and more. I had a thyroidectomy 2 years ago now and have been very unwell since. I was prescribed Levothyroxine and within a few days of taking it the muscles in my legs were so weak I could scarcely walk. I got progressively worse with many symptoms and eventually became virtually bedbound. Like you I was exhausted by cleaning my teeth and somedays could not lift my arms or swallow. It felt as though I was on an extreme fairground ride with a migraine and bad dose of flu. I had several hospital admissions and was told all my blood tests were in range so there was nothing wrong with me and I needed to take anti-depressants but a mental health assessment showed I was not depressed. A friend found this site and with advice from people here I saw one of the Drs they recommended. He said that my blood levels were too low and that as I had got worse on a higher dose it was likely that I did not convert the T4 in Levo so had side effects and extreme hypo symptoms. I have been on an increasing dose of NDT over the last year and at last the symptoms are beginning to subside. I still have a long way to go but this last week have been able to walk around the block every day - not far for somebody who had a walking holiday in the American Canyons a few months before surgery and worked full time but a big step having been virtually housebound. Sorry this reply is so long but just wanted to say that even with extreme symptoms you can improve. I read the book by Diana Holmes (I think thats her name) and thought my goodness this is me! People on this site have been very helpful and their advice has helped me to stand my ground. I think Drs are a bit defensive when you first start asking for results etc but mine just accept it now and that I have an opinion. Its hard but hang on in there. Good luck.
I am so very sorry, that you are suffering like this. I can empathise with a lot of what you say in your first part of your message. this site is very usefull. dont give up
Hi, I feel so incensed when I see people like you, me and thousands of people struggling with these conditions the trouble is doctors dish out pills for all the seperate elements and do not get to the real underlying problem hence such a waste of nhs time and money. I to suffered exact probs as you but had been on levo for 20years for the last 6 years feeling like I could not function al all (CFS, Fybromyagia, sleeplessness, chronic gut probs (gone gluten free) etc I absolutely insisted I saw an endo (never had) and after telling them how dizzy and nauseus I felt on standing up, they did a very quick test which then resulted into further tests and investigations (acth short and long) after lots of discussion it turns out that mt Levo had not been converting into my cells due to piturity and adrenal deficiency, they also discovered an abnormal low growth hormone, firstly all of this could have started years ago after a traumatic birth where I had massive heamorraging, a condition called Sheehans Syndrome which has resulted in empty sella (discovered on recent MRI) and damage to cells which enable conversion of thyroid meds, so this has not been showing on TSH levels and doctor says all with thyroid ok, well this proves it has no use for SOME people who have underlying issues, so now steroid dependant and next step is thyroid and endo will have to go by symptons rather than TSH then next growth hormone (have to meet NICE guidelines to be treated as very expensive), So moral of story is do not let GPs beat you down as they do not have the experience to understand more complex underlying probs please insist on seeing an Endo and insist that he do other testing on you. Good Luck and please get back to us. Take Care
I am 58 and have been in the menopause for 4 years.I too have some symptoms like yours, such as the panicky feeling, hot sweats, weight gain in stomach area, urine infections, hot then cold, aching joints to a degree and face and neck going red. These symptoms unfortunately are menopause symptoms. Combined with your other problems makes it even worse.
My GP told me the thyroid had no connection with the menopause!! Work that one out when it is all hormone related.
I have learnt to deal with these problems as time has gone on but it doesn't make it any easier when the pain is there most of the time.
Like you I have maybe one good day a week if lucky, the rest you know what it's like.
Hope you get some joy from your visit to Dr B and you start to improve.
Just a word or two to confirm the menopause issue. Am way past it now, but SOME of my symptons were far worse during the menopause, plus my body was confused by being on HRT for a number of years. I took HRT to combat pre menstrual syndrome and it worked for me, ( I had patches followed by inserts under the skin, sorry can't remember correct term ) but menopause kicking in extended the process of menopausal symptoms.
The particular symptoms that increased in severity were early morning extreme weakness, unable to function beyond making and drinking tea, coupled with hot flushes, but all over body, not just upper torso.
As I say way beyond it all now, but still struggling with other symptoms of Hypothyroidism and
sub Adrenals.
Do take heart from all the support. You will get through, but I would caution against the expectation that you will ever be NORMAL. You have conditions that prevent that, but you can learn to manage, and live a relatively 'normal' life.
Thank you all for your words of concern and comfort. Not feeling too good today woke up this morning with a very painful face up under my cheek bone the mussel feels very hard and sore I guess I was grinding my teeth badly in my sleep again. On top of that usual painful symptoms. I would love to be able to reply to all of your messages however going on the computer for long periods does not help me. My hands are very painful. Please don't think I am ignoring your messages I read every one of them I sympathise with you all and support you and this site whole heartedly. Keep up the good work. Reference the comments to do with HRT I did go on it for a few months but had to come off it as I was getting considerable pns and needles in through out my body and palpatations. I will be seeing Dr B soon. Thanks to all of your help and advice I am now having a better understanding. I am still waiting to receive my blood results I requested two days ago via email from the doctor surgery but not yet received them. I will give them until Tuesady if I haven't received them by them I will be pressing them on the subject again. Query do any of you when blowing your nose get blood streaks on a regular basis? Just curious. Have a good weekend all and keep warm.
sorry you feel so low and unwell, I am sure you've already read up on everything but can I just ask how much vitamin D you are taking and when in the day you take it and when in the day you take your levo.. Harvard profs seem to think that D3 needs to be at around 5000 i.u per day and it clearly has to be taken 4 hours away from Levo.. you're probably already doing this.. but just in case. it might make a difference....
I also get the itchy stuff and my cold patches are an hour after eating and only really relieved by going to bed and getting a bit of sleep. I don't have an answer for that yet but all the rest of my symptoms seem to be controlled by
Levo.. 5000 IU of D3.... Magnesium B (wassen)... Selenium Ace (wassen)
Thank you for your kind words and concern. I appreciate your advice and I sympathise with your suffering.
I am taking vitamin D but I noticed it is D3 1000 IU I do not know what that means. I also take Well Woman 50+ both vitabiotics they also have vitamin D in them. I also sit infront of a SAD lamp for an hour a day. Not that any of it makes any difference to feeling rubbish.
Waiting on an appointment with endocrinologist, I have been advised she is very good. I am on the write path hopefully to getting the help I need. I pray they everyone that suffers will be taken seriously and not have to keep fighting to be heard. It is digraceful that people are suffering and even being insulted by GP's and being stigmatised as being mentally ill.
I have great admiration for the ladies that went to the scottish parliament I support them wholeheartedly. I've signed the petitions. I am sure our voices will be heard there is definitely a wind of change in the air where health concerns are being raised. Whether it is be it through food or neglect in hospitals.
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to do them all and more besides). She is very knowledgable on everything to do with the thyroid, including all the different medications that might help you, and is much more open minded than most GPs. 
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