this is my story it might help someone,this was my symptoms

severe migraine,back pain then pain in in all my muscles,after going back and forward to my GP for about 6 months he could see me changing and referred me to a neurologist who had treated me before,by this time all my muscles had gone ridged with no flexibility they were solid,my body was all swollen,I couldnt even hold cutlery,my voice went hoarse and i couldn't speak properly as my tongue swelled up and stopped me being able to pronounce word,it affected my vision it went blurred and I had pins and needles in hands feet arms and legs,I could hardly walk because my muscles were so hard ,and my face changed so much I didn't look like me after loads of tests,brain scans etc,my neurologist was baffled he couldn't figure out what was wrong,he got another doctor who deals with muscles to have a look at me,and he said it could be thyroid,they checked my results and it was so low they couldn't get a reading and my pituitary was working about 200 times faster than it should have been,the next step would have been a coma,they found out I had something rare called hoffmans syndrome and thats why I was so ill but after a week of starting levothyroxine there was a huge improvement,all the swelling,pins and needles,hard muscles were gone,I started to walk better talk better,now a year later I feel so much better,still get some migraine headache and still have sore muscles from time to time especially if I am doing something strenuous and muscles get sore when its the time of the month although I am going through the menopause at the moment,but overall I feel good now

24 Replies

  • Great news dylandolly.

    I am constantly learning what I believe to be new disorders but in fact so many were, as with Hoffmans syndrome, recognised in the late 1880's.

    It it so good to read that you finally got a diagnosis and treatment. Thanks for this and I am remembering a woman I met years ago whose muscles had gone hard and stiff and walking was more of a shuffle for her. Her Docs had no idea why. She was given diagnosis of fibromyalgia.

  • I was the same I just shuffled along,and I was diagnosed with fibromyalgia too,I still have sore muscles especially my thumbs,but I have been told carpel tunnel is common if you have thyroid trouble,but in general if feel like a different person now

  • What medication do you take dylandolly? I have problems with joints etc awaiting results from MRI scan. On levo only.

  • After about a couple of months on levo, I completely stiffened up - couldn't bend, shuffled around. A change in make made all the difference.

    It may be that you are still not on an optimum dose to make you feel better or have the addition of some T3. If you post your latest thyroid gland blood tests, complete with ranges on a new question, someone will comment upon them. Also, make sure you have had a Vit B12, Vit D, iron, ferritin and folate. If not request them as the first two are usually deficient and can cause problems.

  • Thanks for that Shaws,I will ask about them,I have never been given vitamins or Iron by my Doctor as I was saying to someone else I take fish oil co-q 10 and butterbur and feel that they help me,but with regards to my blood tests I have never been told the readings so have no clue about T3 and all the other things you talk about,when I get blood done now they just say the readings fine

  • Hi marmaris,I only take 100mg of levo now,I have tried everything I think lol,anti inflammatory,painkillers,epilepsy meds, and anti depressants and to be honest none of them helped enough to justify taking them,so I now stopped everything and came dowm from 150mg 0f levo to 100mg,I now take herbal stuff which I thinks helped,I take krill oil which is like fish oil but much more potent,also co-q 10 and butterbur for headaches which was recommended by a neuorologist and I feel for me it's better than all the other meds I've tried.also the longer I have been taking levo the better I feel It seemed to take a while to really get into my system and work at it's best,I am also at long last starting to lose some of the weight I put on which was about 3 stone,I have lost about a stone and a half now

  • Thanks for that dyandolly I will check out all of those components. Many thanks. Diane

  • Thank you for sharing your story. It is so good to read that your condition was thoroughly investigated and you are on the way to restored health.

    Don't push yourself at the time of the month as thyroid activity is challenged at that time as is demonstrated by the difficulty showing itself then.

    Would you consider sharing your valuable story for the wider benefit of others on the main Thyroid UK site?

    The link is:

  • yes I would be happy to share my story,If it helps anyone that would be great,my neurologist said in 25 years he hadn't seen a case like this,he had me in at the hospital to present my case to all other doctors he worked with and they had to guess what my condition was after hearing my symptoms,my Doctor said with a thyroid condition it impacts on your whole body there isn't a cell that it doesn't affect,I found the brain fog hard to put up with,I could barely think straight,but there's light at the end of the tunnel,I feel fine now

  • Sharing your story would be of great help to others, it is so valuable to others whose doctors might be baffled by similar awful symptoms, so thank you for your generous response to the suggestion.

    What wonderful, clever, open-minded doctors you have been blessed to encounter and what a wonderful neurologist eager to open the minds of other doctors, with your co-operation. You must already have helped so many others and have certainly brought new realisation to many medical minds. Your story is so significant many people would be so glad to read it. It might cast a needed light on the condition of some who are just told scornfully "It is all in your mind" or "You are only ill because you want to be." and so they crumple, untreated, at the bottom of a brick wall of indifference.

    Honestly, your story has me walking on air, so I can imagine what you are feeling!!

  • I have sent my story to the web site you suggested,I must say my neurologist was fantastic,he said he spent his whole weekend thinking of me before he saw me on the monday,he said he could always usually come up with an answer to a problem but I was baffling and I was so glad when he went to ask the muscle doctor for advice they had me into the hospital a few days later to test my muscles,the put needles in with electrodes on and listen to the noise your muscles make,It actually sounds like they are screaming but some didn't and thats when I found I had Hoffmans syndrome,I have never felt such relief,as before this my GP said we couldn't rule out the possibility I was seriously ill and I certainly felt really ill, so I am really glad it has helped you,it is so scary when you feel ill and dont know whats wrong

  • You had some distinct clinical symptoms of a thyroid gland problem, i.e. swelling hoarse voice, swollen tongue, difficulty pronouncing words, vision,pain. I assume no-one did a thyroid gland blood test until the neurologist saw you? Most Doctor's nowadays do not know clinical symptoms.

    It is a pity life has to get so hard and nearly impossible because of non-diagnosis.

    I am glad you are now on the road to recovery. Always get a copy of your blood test results complete with the ranges and post if you have any queries.

  • yes shaws your right,I had been unwell for a few years going back and forth to doctors and had lots of test but no one had did a thyroid test,then hospital didn't flag up such unusual readings for thyroid and pituitary test,was told it was human error it had not been spotted before

  • Yes, 'human error'. I paid privately and one Specialist told me I had a 'post cricoid web' which would need to be removed. None found!!! Another told me I had 'reflux' - didn't. The A&E cardiac dept discharged me with 'probably viral with high cholesterol. Suggestion by first aider - got TSH which was 100 and began levo.

    Medical doctors, etc. obviously have 'thyroid gland' info buried somewhere in their training.

  • yes I also had every heart test known to man when they were trying to find out what was wrong with me,I also had a cholesterol reading of 12,but thats under control now thankfully

  • My neurologist found mine too after pretty much the same symptoms as you. GP's ?????? my mind boggles.

  • The "human error" my GPs made was to REFUSE to read my A4 page of symptoms, and to tell me I was just a "vain, silly woman" when I asked about facial swelling making me look just like a toad. So I suffered for seven years more until burning seized-up muscles meant being unable to walk upstairs/slight hills; had difficulty speaking caused by stiff muscles around mouth; was choking at night, etc., etc. And still such ignorant GPs are everywhere. Mine did at least apologise to me.

  • That's awful,I was very fortunate that my neurologist knew me,I hadn't saw him for a few years,but he saw the change in me straight away,my face was so bloated and expressionless,and I had all the same symptoms as you,with muscles,voice etc and also terrible daily migraine headaches,but there is light at the end of the tunnel,I feel so much improved,I was at my GP today and got blood test to check my vit b12,after being told on her that its good to get it checked out,I hope your health is much improved now as mine is,

  • Thanks, yes, I feel pretty good re thyroid treatment, I'm sure you will continue on your upward path. Going to post your B12 results when you get them? You'll know by now never to trust any GP saying "normal", you're fine!

  • yes I will post results when I get them,but I am going on holiday for 6 weeks,so it wont be until I return,I also asked about vit d and he said 40% of the population in Scotland are low in vit d and that they dont provide it even if you are low so I got it myself and started taking that and folic acid,as I have read how important vit d is to your body

  • Hello, dylandolly, noticed that you said about taking butterbur, so I was browsing the MHRA site, as one does of an evening, and came across this warning about butterbur, thought you should know. here is the link:

  • Thanks so much for the link,I am very careful about which butterbur I use as I have heard about how toxic it can be on your liver,I am going to stop taking it after I finish this last bottle and see what my headaches are like now without it xx

  • Great to read your story dylandolly, thanks very much for sharing. I wasn't as ill as you, but some of your symptoms strike z chord with me - particularly the pins and needles and migraines. I also had a problem with a weakness in my neck muscles and could barfly hold my head up right.

    I haven't heard of hoffmans syndrome do will google this to find out more. Xxx

  • I can relate with the headaches and pain in your neck muscles Clarebear,it was so debilitating,I must have tried every kind of pillow known to man haha,but I found butterbur to be helpful ,it was my neurologist who recommended it to me,but watch what kind you use,see link above that nostoneunturned kindly sent me xx

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