Hi peeps. Couple of weeks ago I was diagnosed with underactive thyroid. I had for months… actually since before last Xmas… had increasingly bad fatigue and naturally thought my MS was progressing… however I did remember (thank goodness!) that you should never assume something is MS!
So asked GP for complete blood screening… just as well as underactive thyroid was found. What’s annoying is that the GP was surprised that no doctor had told me of this before, as it’s been showing in past few blood tests! (admittedly a bunch of GPs were sacked from my surgery last year for negligence).
On doing my own research, I think it might be Hashimoto’s Disease, which is an autoimmune disease of the thyroid that causes it to become underactive… plus it’s often associated with other autoimmune conditions… ie MS!!!
On the ‘glass half full side’… I started taking Levothyroxin… and already feel much less fatigued even though I’m on very small dose (25 mcg … lowest dose and then I have to have blood tests once a month until the thyroid in stable).
Interested if anyone else has same diagnosis?
Also, little lesson in this story, never take it for granted that your MS is causing a new problem. Ask for full blood screening just to be sure that nothing else is going on. They can really tell a LOT from thorough blood screening.
Lovely to hear from you but sorry to hear of your thyroid problem.
I haven’t had the same problem as you but a few years back the pain seemed to increase in my hands and feet, and like you, just assumed it was down to my MS.
Long story short, my GP noticed they were swollen, full blood count and low and behold I have RA as well, another auto immune. Rheumy said that sometimes when you have one auto immune ie MS then more can just pop up.
Like you the moral of my story is don’t assume everything is down to MS.
Apart from that I hope things are ok for you, take care.
I’m another one with an underactive thyroid. Some people just have an underactive thyroid with no antibodies to show it’s autoimmune, yet other have the antibodies no idea what difference it makes as my mother has the condition as well. I’m autoimmune and she isn’t yet we are on exactly the same treatment.
My daughter has the Hashimoto form of under active thyroid. I dont know what dose she is on…Ill ask her when I see her…teatime…she moved in with us recently.
My 2 sisters and carer are also on the same drug. I think my carer takes 75mg.
I agree. We can’t imagine that everything is down to the MS.
I am the opposite side of the spectrum to you “Hyperthyroid” overactive thyroid and I am in the midst of investigations. It was only discovered 12 months ago when I curiously was at the dentists of all people! Far more helpful than my neurologist of the last decade has been. He immediately could see (in the chair) that I had a goitre that I had no idea about, and thought it should get checked out! I skipped home (metaphorically because I’ve been a wheelie user for 30 years) thinking I might actually be able to improve something here, not everything is down to the MS. Turns out, cutting a VERY long story short. I have a multi nodular goitre. Unfortunately it contained a ‘suspicious’ lump. So far this year (really needed that!) I’ve had 3 biopsies, and they’ve all come back ’ inconclusive’. I’m not overly concerned about the suspicious lump (I’m on a watch and wait 6 month check now). I am however much more interested in how my overactive thyroid is affecting me and would love to be able to blame something other than the MS for my Tinnitus, Palpitation Fatigue Massive hair loss etc etc. which have only come on in the last few years. I read somewhere thyroid problems are massively increased for people with MS so it is always worth considering your thyroid for unexplained unrecognisable (to you) problems.
Hope everything settles down well for you with the Levothyroxin.
Hi Pat I also have an under active thyroid which was diagnosed many years before Progressive MS. I take 75 mcg one day followed by 100 mcg the next. Sometimes it takes a little while to work out the correct dosage but hope you feel much better soon.
Thank you all for wonderful responses as usual! I have had a phone consultation with GP. He thinks I have mild hypothyroidism and is referring me to an endocrinologist to see if it’s autoimmune… called Hashimoto’s. In current climate I don’t expect an appointment any time soon.
I have for some time felt like there is something small in my throat. Pills get caught there… and believe me, if you have an amitriptyline caught in your throat you know it! Stings like mad! Might be a nodule or something so will need camera put into the throat (sounds like fun… ).
BUT I must say my energy levels are a LOT better… better than they have been for months and months. I suppose I was getting thyroid fatigue on top of MS fatigue! Even more fun!
Thank you again. Hoping everyone is managing ok in this new surreal world we live in.
Some of you on here know that I have taken Holy Vows … although still living in my flat as I’m basically too old and too ill to live in a convent (there are loads of old, ill nuns in convents… lol… they don’t need another!) But I am living a monastic lifestyle at home with my buddy Dickie the 3-legged cat and doing what I can through my church. I tell you this in case you would like me to pray for you or for someone you know. Please PM me if so, in meantime I pray for you all as ‘my MS family’ and if you like to pray, please pray for me too. Thank you.
My goodness Elaine you have really bin through the wars! I’m sure the ‘suspicious lump’ has not been easy to live with. I had breast cancer in 2016 and named my lump Walter! Nuts I know but somehow it lessons the fear if it’s got a silly name!
I also have tinnitus and have had it for years. My neuro said he thinks it is MS related as it does seem to go up when I’m feeling very fatigued… but maybe it’s just because I’m ‘home alone’ and therefore notice it more. Palpitations are a known symptom of hyperthyroidism… and I had an episode of palpitations couple of weeks ago. Side effect of the Levothyroxin. I hope I don’t have them again. They are unsettling to say the least.
Thanks for your response and really hope that you get some answers soon.
Pat, How lovely to see you back on here. Yes, I have an underactive thyroid. Take medication for it. I believe in England the threshold for detecting thyroid problems is low. Much lower than in Europe. So many people in England have an undetected problem. I had to really fight to make my doctors run proper tests. Thyroid problems are much more common in women than in men. Pleased to hear about taking your vows. May I wish you all the best on this road you have chosen to travel. Love to Dickie too. Please pop in now and then on here to let us know how you are? Anne xx
Thank you for lovely reply Anne. Yes I do intend to pop in more often. It seems I’ve had the problem for years! The first blood test results that I should have been told about were in 2012! No point complaining as all the partners in the surgery were sacked last year for negligence! The GP who phoned me seems very good and he immediately agreed to refer me to endocrinologist (although I’m not holding my breath for appointment!).
Hello Pat , it’s so lovely to have you back on here , you were one of the original people on here when I joined . I’m so glad you are still popping on the site. I’ve not been as active as I used to be . I’ve felt a bit overwhelmed by everything happening with the covid . Molly’s been really stressed shes 19 now and her mental health has really dipped since the covid . It’s such a shame for her but Autism and mental health seem to go hand in hand. I’m glad you’ve found out what was causing the fatigue and you are feeling better . How is your brother …I always think about him . You are so kind hearted taking him under your wing . I hope he is well . I’m like you my faith is very strong. Every day i am praying for strength and wisdom to cope . I’m a Jehovahs Witness , I probably told you already. It helps having a faith doesnt it . I’m not able to do my volunteering on the Jw.org cart because of the virus but I’ve found other ways to help . At the moment I’m writing letters…loads of them to old friends and people I know and also to older ones at Kingdom hall. We cant meet up anymore it’s too risky we haven’t opened our place of worship but we have regular zoom meetings . I miss the hugs and seeing them all in person but I’m able to stay close to many through WhatsApp. I’d love to hear from you again . Michelle and Frazer xx
Hi Michelle, I’m so pleased your faith supports you too. What would we do without it! Peter is doing very well thank you. He did ok during lockdown. We phoned twice a day and then went into a support bubble as soon as well could. Then I taught him to FaceTime and he’s very keen on that now! Yes Autism and mental health go hand in hand. Really with Peter I think if anything it’s a bit easier because he’s learning disabled as well… but a lot of people seem to have developed mental health problems in lockdown. And now it’s a case of ‘here we go again’.
Sending you loads of love and to Frazer too… from Dickie… and prayers for you Michelle and for Molly.
We do go back some years Bouds!!! Calm and at peace some of the time… but struggle a lot of the time too! Tiredness and now this thyroid drug means that I’m hungry ALL of the time! Says a side effect is weight loss… apparently NOT for ME!!! lol …
I’m another with underactive thyroid. Mine arrived via a different (not terribly unusual) route. I had an overactive thyroid in my early 20s - it was an autoimmune variety called Graves Disease. The options for an overactive / Graves thyroid disease are radioactive iodine or surgery to remove most of the thyroid. The drug therapies are quite difficult to balance which is why the doctors like to cure rather than treat it.
I had the surgical option (they don’t like giving young women radioactive iodine because it can make them infertile and it didn’t matter that I had no plans to have children!). They typically take a bit more than they think is needed because they want to make sure they have enough and it’s easier to treat an underactive thyroid than overactive.
So about 5 years after the operation at the age of 22, my thyroid became underactive, and I’ve taken Levothyroxine ever since. It has bounced around a bit so I’ve taken as much as 150mcg or as little as 75mcg. Right now, and for the last few years, it’s been 100mcg.
The weight issue - I’ve not seen or heard of people losing weight with underactive thyroid, they tend to with overactive. But just like with MS, our bodies are all different, so even though most people lose weight with overactive, I put weight on!
Hopefully your thyroid will behave itself, after a year or so it should settle down and be happy with the dose of thyroxine you end up with.
I have it. Been on Levothyroxine for about three years. Can’t notice any difference except perhaps gaining a little more movement in my hitherto useless left hand. But that could be due to the Gabapentin as well. After a bit my doctor raised the dose so I take 50mg one day and 75mg the next and so on. I have 3 monthly blood tests for kidney function so that’s a way of monitoring it. You could find your doctor does the same after you’ve been on it for a while. Hope it works out.