It’s never going to be good news when your MS nurse phones up out of the blue and says, ‘can you talk?’
To cut a long, uncertain story short, it seems I may, just may, have developed thyroid problems since taking Campath.
It’s treatable, I’m not too worried and as always, the MS nurse was calm and reassuring. I took the risk, I knew the chances – a 10-30% possibility with Campath, and I have no regrets having had the opportunity to take it. It has given me my life back.
What’s frustrating is that I was pretty much signed off by my neurologist until next February and was finally beginning to put the uncertainty of living with MS behind me. Now there’s another round of blood tests on top of the monthly Campath one and I’ll have an appointment with yet another consultant, an endocrinologist this time. And what’s really, really annoying, is that I seem to have come up with the dodgy odds again.
Apparently there’s a 1 in 750 chance of developing MS in the first place. Not too bad. If you have a parent with MS as I did, there’s around a 1 in 100 chance. That’ll be me then. And now with the thyroid odds, I’m beginning to wonder if I’m ever so slightly jinxed.
On the flip side, I’m grateful a potential problem has been picked up so early, and at least I’m already learning to live with some of the symptoms as they’re remarkably similar to MS – fatigue, hand tremors, heat intolerance. I’m wondering though, if you have both MS and thyroid problems, does that mean you get twice the amount of fatigue? And hand tremors? I’m only asking as I’m beyond shattered right now and I broke my second-last glass a couple of days ago. I have now reluctantly invested in plastic ones. Still drop the blasted things though, but at least they bounce.
Anyway, with the odds stacked in my favour, I’m toying with the idea of taking up scratch cards as a hobby. Or bingo?
Bummer. I’m sorry to hear it. I’m actually wondering how common it is to have thyroid problems with MS even without Campath. I know of others with MS, not on Campath, who’ve also developed thyroid issues. Autoimmune diseases have a tendency to be joined by other autoimmune kinds of problems. (Or is this a specific kind of thyroid disorder only associated with Campath?) Of course, it could very well be the Campath. Just thought I’d throw that out there for what it’s worth. My MS-like neuro problems also involve endocrine issues, both thyroid and adrenal, and it is indeed frustrating trying to figure out just which malady is causing what degree of weakness, shaking and near-comatose fatigue. So much fun! You have my sympathies.
That’s interesting – from the limited research I’ve done, it seems a lot of people with MS also have thyroid problems?
I knew there was a chance. The neuro and MS nurses made it very clear but also said it was treatable. But perhaps I could have developed it regardless, or at least the Campath might have been a trigger.
Hopefully this will explain why I just can’t seem to lose any weight no matter what I try 🙁
Hi sorry about your news, again as in other treatments the drugs used have a nasty sting. I went to our launch yesterday. The best speaker was Dr Steve Sturman a Neuro consultant at Birmingham’s QE, he is very enthusiastic, his talk on MS treatments and research were very interesting also on MND, has made reconsider on going to The meet the Neuroscientist’s at Imperial collage on Thursday 19th
Not having MS, but lived with for 28 years I still want to learn as much as I can, about research and different treatments, to enable me to help others, x
Knowledge is definitely power!
That meeting at Imperial College sounds good? Hope you get the chance to go – could pick up some useful info.
It’s like any treatment for illnesses, there’s always going to be side effects. Like the pregabalin I take. I wouldn’t be without it but I know it’s increased my appetite too. Meh.
Hi, sorry to hear your news. Just to say that, though not having had any DMDs, in amongst the various diagnostic blood tests, I was told I had an underactive thyroid. For me it’s just meant that I’ve to take tablets every day. They don’t seem to have reduced my fatigue really but as my GP said, they should be stopping it being any worse. Also, it does mean I get free prescriptions (for any medication) as it’s a lifelong condition (unlike MS, obviously!!)
There does seem to be some kind of link then?
The oddest thing with me is the inexplicable weight I’ve put on. I’ve been wracking my brains, so perhaps this is the reason? And the increase in exhaustion, plus my hand symptoms getting far worse than before. If it’s not one thing, it’s the other! I’m trying to be relaxed about it, more annoying that I seem to be a further drain on the NHS and there’ll be more appointments than I expected!
Now come on, really. You were just thinking your little cocktail of medication was missing something, didn’t you.
Haha!! Honestly, I seem to rattle every morning, lol. Plus I take fish oils and evening primrose oil and vitamins. Meh.
Ah! When I clicked post, part of my message disappeared. Hope they get you sorted very quickly. Take care x. It even cut the young in cheek smiley. I will add another for good measure
Ta! Got next blood test in a couple of weeks, so hopefully find out more then…
thats too bad :/ treatable, but still a pain in the arse having to deal with more tests
i’ve been tested for thyroid problems since i was about 12 since I have ALL of the symptoms, but nada. keep being told there isnt a problem. been doing reading, and sometimes people are so borderline, it can be hard to diagnose. some people just get put on the meds since they dont tend to have an adverse effect even if you dont have problems
hmmm im actually going to do some reading about the possible link between the 2 mentioned….
Let me know what you come up with?
Until recently, I didn’t know there was a link, but I guess as they’re both autoimmune diseases, it stands to reason.
Very annoying having more tests. Just glad it got picked up! Will see what next test throws up…
You’re not the only long shot expert. Us MSers should do the lottery. One of the 100,000 of us would win every week!
Being sickeningly optimistic here, but should you have an over active thyroid, you’ll get free prescriptions for life.
Yup, it’s definitely a lottery out there!
In Wales we get free prescriptions. Possibly that’s why the dispensing rate is shooting through the roof??
Sorry for this news x
I had a borderline under active thyroid for many years. They never put me on treatment at the time but after I had my son (about 9 months) my thyroid showed signs of struggling even more and I was put on a low dose to support it.
The Avonex I take for the MS can be detrimental to the thyroid especially if its gone already but so far my blood tests come back normal range. If they don’t, the meds will just be upped (levothyroxine).
Just wanted to reassure you, it will be fine. On a positive note, once I started the thyroid meds, my weight went back to the way it was in my twenties! Yay!
Sorry, should have said when he was 9 months old, he is now coming up 8!! Xx
MS brain! I get that in bucketloads…
Great news about your meds! I wish I could lose my, ahem, excess weight, lol.
I don’t think I’ve ever had my thyroid tested before, only since the Campath. It would explain an awful lot though 🙂
Hi after Vicki had the peg inserted July last year, being a vegetarian she decided to have more vitamins for vegetarins I found organic vegan D2(from plants)from the web and veggie B12 from holland and barett, the link below is the B12. Both were a pump spray apricot and cherry flavour, with the spray under the tongue its absorbed into the blood stream quicker.
I always find a coffee or 2 and a slice of mascaponie cheese cake helps me, hope you are feeling better, x
That’s really interesting David. I used to be a vegetarian, was one for years until the fateful Bacon Sarnie Day. Meh.
Marscapone cheesecake sounds divine – a recipe would be most welcome?
I go to café Nero about 10 miles away in Lichfield, its a double shot coffee 1 slice to eat and 2 to go don’t like to be greedy, I do bake but not cheese cake.
One of the new treatments is stem cell therapy, they take a sliver of your own skin and grow the cells for transplant, how good is that,x
I’ve heard about that – apparently Jack Osbourne had it but won’t admit to it (or something). I might be wrong. Could be a fantastic?
I go to Coffee #1, a chain we have here in Cardiff. Very good coffee but cakes are a bit on the pricey side!
That is such bad luck. So sorry to hear that but glad that you are continuing to take the positives from your treatment. I hope you get sorted soon xx
It’s definitely bad luck, but hopefully it can be controlled with tablets. I guess it’s just something I didn’t really need on top of everything else. But it may explain why my cheek bones have disappeared??
Over the last 4 years Vicki had botox 4 times to relieve the spasams in her legs and arms.The injections were in the ham strings and muscles in both legs groin and arms, first time result was really good 2 and 3not as good and last october was better. By far the treatment she looked forward to was reflexoligy on both hands and feet every 2weeks, after 2 months she felt tingling in her legs, and when her bladder emptied( she was catheterised) he cat used to lick her hands
Because of the oil used , x
My friend has had botox treatment and has reported back good things about it!
Oh, ugh. Sorry, SIF. That is crummy. I hope it’s not TWICE the fatigue, etc. Please keep us posted. And I’ll go halvsies on a lottery ticket with you!!
Am seriously thinking of setting up an MS syndicate, lol. We seem to come up with all the odds!