Side effects that you might not know about ! - Thyroid UK

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Side effects that you might not know about !

maureenlesley profile image
13 Replies

I had part of my Thyroid removed, due to a tumour, in 1977 and was never prescribed anything until 10 years ago. I have suffered from almost every symptom described. It wasn't until I had to have a Hysterectomy, and needed to take HRT that any blood tests were taken, and so it was found that I needed to take Thyroxin.

I also suffer from Vitiligo, which I have had for many years, since the early 80’s, (it’s a skin condition which causes depigmentation of the skin) l have lost most of my skin pigmentation over the years and have to wear factor 50+ in the sun) I did do some research 10 years ago (when I was first prescribed Thyroxin) and I found it was a common side effect with those suffering Thyroid problems !! I’m not sure that my Doctor was aware of any link, and never did any tests for Thyroid dysfunction when I presented myself with the skin problems.

It's only after someone suggested I check sites for those with Thyroid problems that I realise that I'm not going mad or senile. I'm allowed to have mood swings. My memory loss is not my brains fault. My slurred speech - I can now tell people that – No ! I have not been drinking ! My falling asleep on the settee isn’t a problem for me, if I've had a busy day. That being so cold at night that your partner doesn't want to play footsie in bed is normal (for me at least !)

I take Levothyroxine of 100 mcg a day and have told friends and family that I have 'Thyroid moments,' depending on where I get the tablets from. Little did I know until tonight how true that was ! I never knew the prescriptions for it could differ with each manufacturer !

Thanks to this site I have found that taking Iron tablets or multi vitamin tablets containing Iron could actually stop your Thyroxin from working if taken together !! I have taken multi vitamins since the late 70’s Partly due to being a vegetarian, and partly due to my Doctor telling me that I should be taking Iron supplements ! I might as well have not been taking the Thyroxin !

I’ve now stopped taken multi vitamins completely for the moment. It’s been a week – and I actually feel a whole lot better ! More energy, memory much better – just feel better ! I know it will be a couple more weeks before the Thyroxin finally kicks in though.

Perhaps my body has been in limbo since 1977 waiting for the real me to arrive !

Scarey !!!

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maureenlesley
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13 Replies
Bunny profile image
Bunny

It's dreadFul the number of similar stories I have read on this and other sites..women blundering on, ill, stressed literally dying for the lack of accurate information and what should be quite simple treatment. I am glad you have found some answers to your own problems and improved your health..well done. Long may it continue!!!!

terriw profile image
terriw

Have you had your b12 levels checked - vitiligo can occur with this also, have you had your folate and ferritin levels checked - look up symptoms of low ferritin/folate

you may already know this but if taking iron best to take vit c to help absorb it

terri

carolscott63 profile image
carolscott63

Hello, re your vitiligo. I've had it since I was about 10 as well. I have also in the last year been getting 50+ on prescription, but only recently through reading in some literature about autoimmune diseases found out that vitiligo was one. Nobody has mentioned it nor worried about me getting any other. I actually had some test in 2006 the result was not correct but on a subsequent blood test, they said it was fine. Still I am on 75mcg at the moment. Another blood test tomorrow. I have Levothyroxine. Still weepy, no energy, but feeling a bit better. Hoping it will be soon. Good Luck to you

carolscott63 profile image
carolscott63

Hi Terriw. No I haven't checked anything to be honest. Have had this since I was ten and nobody has really said anything. Do be honest I havent a clue what folate and ferritin are. Also can you explain the Thyroid numbers T3 etc. Nobody has told me what my count is. I dont know what it should be. Thanks Carol

maureenlesley profile image
maureenlesley

I hope you start feeling better soon ! I'm feeling better every day now I'm not taking the multivitamins at the same time as the Thyroxin.

maureenlesley profile image
maureenlesley

I'm curious about all the different terms used as well. I've tried to understand what people have said, but I know that they know a lot more about the Thyroid and it's side effects. T3 doesn't mean any thing ! I know what H2O is ! All my Doctor ever says to me when I get my test results is that it seems to be ok - but then again they did tell me to take Iron supplements. But they are General Practitioners after all - not specialists, so I shouldn't really complain. I was identified as needing help and was given it !

If anyone can point me in the right direction as to what I should be looking for on my blood test results - in plain English - I would be very grateful !!

Dancerfromparis profile image
Dancerfromparis

Hi Maureen I believe that everyone that has a thyroid problem should insist on seeing an endocrinologist it's your right to demand it and that along with diabetes etc is their forte. Now im not saying they know everything or will work wonders but they do know a lot more about your thyroid then a GP that dosnt have a clue. I hope that helps a little. hugs x

hblower profile image
hblower

I am due to have radiodine treatment for multi nodules to destroy the thyroid and have been told my gp will manage the thyroxine, does any one know the side affects of the treatment hblower

in reply to hblower

Hi There, I had radioactive treatment in the 1970's and didn't ask questions which I should have done. I still had to have my thyroid removed and am have been on thyroxine for over 35 years. I would

not have radioactive treatment if I were you. My Daughter also has throid problems and I have told her not to have radioactive treatment or the op. Doctors will not tell you all the side effects. It has taken me all these years to find things out - most of my problems being related to thyroid - please please think carefully and ask lots of questions

Well the theory is that the radioactive iodine will only affect your thyroid and the radioactive bit won't go anywhere else in the body!! (Breast tissue is particularly sensitive to RAI...... ) I wouldn't be risking it.... read Dr Peatfields book, your thyroid and how to keep it healthy before deciding whether to agree to this irriversible step which is not 100% guaranted to work and your health afterwards is not guaranteed either. Nel

hblower profile image
hblower

Thank you Nelly

unfortunetly my thyroid is nearly made up of goitres, and due to previous surgery removing a begnign tumour 25 years ago it would be difficult because of scarred tissue. The goitres have grown in the past 2 year twice the size, but I was not followed up.

Helen

hblower profile image
hblower

I would like to add that I am petrified of this procudure, but also frightened beacause of experiencing chocking on anything which happens now with my throat feeling there is a band round it causing pressure underneath my chin. A catch 22 situation.

Helen

hblower profile image
hblower

I have refused radioactive iodine, and I was lied to when I asked if it goes into the saliva glands, I was told no, if it did it would be so small it would not affect them, on my consent form side affects were slight neck discomfort and possibly giong hypo, I found out that the first port of call is the parotid glands and mine are dysfunctioning, in a letter it stated that I was being put on the highest dose for a benign disease. I have since spoke to 3 health professions who agreed I was right to refuse it, especially after it was diagnosed that most of my swallowing problems are due to lack of saliva. If you google radioactive iodine look through the sites and you will see the side affects, thre Royal Marsden did a study and found a number of patients with cancer suffered saliva dysfunction after this procedure, but then theirs was possibly a life or death option,. I can tell you is a living misery, to have severe saliva problems, also it does not always work and has to be repeated.

Best wishes Helen

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