Anyone out there who is hypothyroid and who also has Multiple Sclerosis?

I was told I have Multiple Sclerosis this week after MRI's of my spine and head and a lumbar puncture. Bit of a shock as it is my 60th birthday next week and I gather MS normally starts in much younger people. I am very worried that any medication or treatments that I end up on for the MS might interfere with the current successful response to the thyroxin I am on for being hypothyroid. I don't want anything to jeopardise this feeling of being correctly medicated as I ended up going off the rails last Autumn when they fiddled with the dosage and it has taken months to get back to 'normal'.

Is there anyone out there who is hypothyroid and has MS and if so how have you dealt with having both conditions at the same time. Have there been any problems? Is there anything I should be watching out for? I'd love to know. No doubt there must be an MS forum I should join and I could ask on that but the MS diagnosis and all its implications is only just beginning to sink in and I have not yet started exploring what's available in terms of MS patient support on the web.

The Neurology Dept at the hospital are referring me to one of the MS specialists at the hospital and it is one of the things that I will bring up with them: the implications of having MS and being hypothyroid and any likelihood of MS medication changing the equilibrium achieved by my current hypothyroid medication. But I thought it would be worth asking on this site first as I have learnt it pays to hear from actual patients about their experiences and not just blindly accept everything the medics tell you.

17 Replies

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  • I don't think I know anything to help - but I didn't want to see your post go unanswered any longer. It must be pretty tough to get that sort of news.

    Wishing you the best - and do post back.

    Rod

  • How thoughtful of you. Thank you for your kind reply. In a funny sort of way it is a relief to actually have a diagnosis at last. I was totally ignored for such a long time until I kicked up a fuss at the end of last year when I felt there had to be something seriously wrong. Of course I am now going to have the constant dilemma of trying to work out if it is MS or thyroid related if/whenever I feel rubbish!

  • Hi I think that you have to keep your b12 and d3 at optimal levels. I can't remember where I read it, but it might be worth googling.

    Jo xx

  • Sorry to hear that news. I was doing a bit of research about th Paleo diet initially, and then ended up researching diets for MS. I do not have MS that I know of by the way. But I read that the Paleo diet was not helpful or healthy for people with MS and a much better diet plan, that can keep MS symptoms at bay, is a book by Roy Laver Swank

    Here is the link

    bookdepository.co.uk/book/9...

    All the best

    Flutegal

  • Thank you! There are so many things to think about and certainly diet is something I will be investigating so many thanks for the info about the book,

  • Hi, Sorry to hear about your diagnosis but I have read a few things about MS because I know two people with it and a relative had it which worried me.

    On an holistic health site I read that Dr Terry Wahl's overcame some very debilitating symptoms of MS by eating functional foods and this is the website: terrywahls.com/ which has a lot of information on it which may help you. I've also read about a place in the south of England where MS sufferers are treated with a gluten-free diet and some definitely had symptoms relieved, I can't find it at the moment but will keep looking because I think it had good info too.

    Also do consider one cause as being venous constriction in the neck, here's one person's story:

    telegraph.co.uk/health/8359...

    That's still controversial, possibly because it takes MS out of the sphere of Neurology and the control of neurologists who traditionally treat it in most countries, but it has apparently helped a lot of people and was 'discovered' by a surgeon whose wife had MS.

    I think it's Dr S who wrote in his book that anyone with MS should be treated for hypothyroidism because the hormones help the MS symptoms, I think he said it was the first thing to look at, so if you can't get any info about treating both together you might try phoning his clinic for advice.

    Vitamin D deficiency is thought to exacerbate MS, so it's a good idea to top up your levels, and actually the only person I know with MS who took matters into her own hands and moved to the sun did feel much better there.

    My husband is a volunteer driver for the local MS Society and they seem to have a good range of activities if you like joining things like that. However, I've found from the people I know with MS that there seems to be a reluctance in the UK, or probably within the NHS, to consider some of the wider factors involved in it, so you will probably need to do your own research into the various treatments which others have found helpful to them. The story of the man who had the venous surgery is an example, he had to fight at the start for it to be taken seriously even though he was paying for the treatment.

    Good luck!

  • Hi Greygoose, sorry to hear your sad diagnosis.

    I have MS, as well as Hypothyroidism along with Coeliac disease, Asthma etc. Please feel free to PM me for a chat if it will help you.

    kindest wishes xx

  • To boo16 - It is interesting how I only seem to want to do a little bit of MS research each day rather than immersing myself in it which my husband feared I would be doing! I suppose I just want things to be as they were. After all, I am no different in myself than I was the day before the diagnosis. So it is small steps towards enlightenment but I will definitely get in touch next week.

    (In my case, of course, it is literally small steps as my balance and walking are often not good!)

  • Sorry to hear you are having such a difficult time. I'm not saying you have been misdiagnosed but there is much evidence of many that have and it was actually b12 deficiency. You just have to google 'MS deficiency B12' to find out how often this can happen. There is a very good book called 'Could it be b12' which explored this. In any case MS sufferers often report low b12 and that treatment can help their symptoms.

    Have you had your B12 levels checked? The B12 serum test can indicate low levels but still can miss a deficiency especially as the low 'normal' range is far too low and there us much ignorance in the medical profession - the more knowledgable recognise the more accurate test called Active B12.

    The Pernicious Aneamia Society is another good resource.

  • Hi and sorry to hear about your troubles. I thought I had read somewhere that the higher levels of MS in Scotland, have been linked to lower levels of Vit D, so this may be worth testing?

    Mary

  • Thank you to everyone for your replies. It is heartening to know that people will take the trouble to write and very interesting reading the comments.

    Sadly, I am sure that I have MS - the MRI scans and lumbar puncture results made it conclusive and even with my untrained eye, I could see the tell tale lesions in my brain when the neurologist showed me the MRI of my head.

    I had my B12 and Vitamin D tested as part of the investigations. I am aiming to get them to the optimum level. They aren't there yet but are not bad. I have been taking VItamin D supplements since last summer and felt the benefit almost immediately. I have had it tested (along with umpteen other bloods) 2 or 3 times since. It is increasing but rather slowly so I think I might double the dose.

  • Hi! This conversation is 3-4 years old but I found it interesting that I too was diagnosed later in life than usual. I'm now 63 and was diagnosed at 59 yrs old mainly because my biggest symptom was extreme fatigue. I also have had hypothyroidism for many years and Never miss my Synthroid dose because I can tell it if I do. There does seem to be a link between MS and hypothyroidism but I really hadn't thought about it until very recently. I'm rambling but was intrigued when I saw your post and wondered how you are doing now. My MS doctor put me on B12 injections not long ago - the take away is that on my lab work I was in the lower part of normal range which my family dr wouldn't have treated but my MS dr said that was still too low. The shots do help my fatigue. Also take Vitamin D due to previously low levels.

    I'm on Tysabri as my MS treatment and doing ok on it- no increase in lesions on MRI since started on it.

    Hope you are doing well!

  • youtube.com/watch?feature=p...

    Low B12 can also cause brain lesions. Hope you are still on B12 injections. I have them weekly as I too am a sufferer of B12 deficiency damage. The video is from 2013 - and Prof Smith starts to talk 4 minutes in - well worth a watch when you have the time.

    Are you taking an optimal dose of thyroid treatment ?

    Hope you are doing well.

  • I didn't know that Low B12 could cause brain lesions- but mines never been extremely low that I know of. But very interesting. Yes, I keep up with getting my labs for my Thyroid treatment tho it is actually time now to get it checked.

    How long have you been on weekly B12 shots? I hope that they are helping. I was glad when my MS doctor told me that yes, I would benefit from B12 even tho my lab work is in (low) "normal" range. He says that it is under treated in his opinion because of the " normal range " issue.

  • Any B12 test result under 500 can result in neurological symptoms - and yes the range is far too big. In Japan the range STARTS at 500 and goes up to 1300. Their Alzheimer/Dementia rate there is lower than in other countries - including the UK.

    If you have weekly B12 injections it is suggested on the PA forum that you also take Folic Acid or Methylfolate - both work together in the body. I take Thorne Research B complex to keep all the B's in balance.

    Did you manage to watch the video I posted for you ?

    When you have your Thyroid checked - what do they test ? The following are needed - TSH - FT4 - FT3 - the last being the most important as it is the ACTIVE thyroid hormone and the Levo/T4 you are taking needs to convert into T3. Without the correct Test result you will not know if your Levo is working. T4/Levo is a storage hormone. What dose are you on ?

    The brain has more receptors for T3 than any other part of your body - so when it is low there is simply not enough to go around. Sadly the Free T3 is rarely tested - but you can have home testing kits sent to your home through Blue Horizon to cover all the required tests.

    Thyroid 11 on Blue Horizon covers all the thyroid tests plus the much needed Ferritin - VitD - Folate - Ferritin. The B12 is also included but not worth testing in your case as the results will be skewed.

    I have been having B12 injections for over 3 years now and I find it helps with pain from the nerve damage I have.

    thyroiduk.org.uk/tuk/testin...

    The above link takes you to the main website of Thyroid UK and the site of Private Home Testing :-)

  • While doing your research you will come across LDN - low dose naltrexone. This link shows Dr Chris Steele talking about it;

    Another source for research is;

    ldnresearchtrust.org/

    Some consultants will prescribe it for MS on an NHS script, otherwise it is available with a private script form Dickson's pharmacy in Glasgow. It is not a cure but can stop any deterioration of the condition. I use it for hashimoto's disease - Maddie

  • Sorry to hear about your diagnoses. You should look into Medical Marijuana. There are loads of studies done that show the effects in helping neurological disorders. It can mostly help with the pain associated with MS. There isn't enough research done specifically for the effects of medical marijuana on MS, but it will surely help with the pain associated with it. Plus, it has so many other great benefits health-wise.

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