Support thread for those with thyroid related disorders

[yeghoulsandlittledevils]

This is a support thread for anyone who would like to ask any general questions about thyroid function or life with thyroid conditions (especially if you don't want to start a new thread) and also for any Mumsnetters who have been diagnosed with thyroid disorders (hypothyroidism, hyperthyroidism, Hashimotos and related conditions) to chat and support one another. Please come and be part of the growing Mumsnet thyroid support network.

[yeghoulsandlittledevils]

( oops...My DD was born at 31* weeks, not 3 weeks! Thankfully she was not harmed by her premature arrival and is a healthy, normal teenager!)

[yeghoulsandlittledevils]

Yes, I have to take iron as well. Will I have to keep taking iron for the rest of my life, or is there some other cure? Does anyone know why we get low iron as well?

[yeghoulsandlittledevils]

Actually, batterylow mouth ulcers can be caused by low B vitamins, now I think of it. (Reminded by low vitamin B12 = pernicious anaemia.)

[awaynboilyurheid]

Ladies have to sign off for a while but great support thread will be back , thanks thanks thanks Yeghouls to allow me to speak to people who truly know what its like.

[Inkspellme]

Has anyone else had bladder issues associated with underactive thyroid?. Mine went quite low recently and I suffered from an overactive bladder. rotten to be getting up several times a night to pass a tablespoon of wee when I was exausted anyhow. I'm on 175mg of thyroxine daily having been diagnosed 8 years ago.
thanks

[Rufus44]

Thanks away I will make a note to get that checked at my next review

[ILikeBirds]

I always struggled to raise my ferritin levels, it's only now that I've stopped eating gluten that I've managed to increase mine from the teens. I was actually tested for coeliac disease a short while after starting thyroid medication as taking iron had had very little impact on my iron levels but at that stage the test was negative.

From what I understand about iron deficiency it can become a vicious circle, as low iron levels can cause periods to be heavier, so you lose more iron and so on.

[batterylow]

Reynauds is a circulatory thing, my hands and feet go blue in even slight cold. It's more annoying than anything else (painful) but can be a symptom of other things too so they test if there are other issues. Think it's lupus, rheumatoid arthritis and thyroid levels they are looking at.

Interesting about b12 ,I have been anaemic several times too although I wasn't last time they checked my iron. I don't actually feel particularly tired though, more unusually awake considering the lack of sleep over summer but that may have been more to do with stress/adrenaline.

[yeghoulsandlittledevils]

Thank you for joining away and being a founder member. I see this as one of those repeated threads that runs and runs, as it doesn't look as though thyroid issues are going to disappear any time soon!

Welcome Inkspell. I do wonder if weeing a lot (I don't usually have to get up often in the night, maybe once of twice a night now and again) and if being dehydrated is connected in some way. I will try to remember to ask my GP when I see her next!
Have you been tested for the various types of diabetes? That can be connected.

Am away for dinner, but don't feel you need me to keep the thread going.

[Inkspellme]

Thanks, I'm having a blood test on Tuesday so was going to talk to the doc. No history of diabetes in my family and its gotten much better since my levels have come but will check anyhow.

my friend who is a pharmacist says that thyroxine is the most common drug she dispenses -its always surprising how common it is.

[RockinD]

Thank you for starting this thread. After nine years of trying to figure out what is wrong with me, I have diagnosed myself as hypothyroid! Currently in my second attempt at treatment via the NHS, which is going quite well, but have also fixed vitamin B12 and folate, vitamin D and ferritin deficiencies with no help from the NHS and, although I have not had a formal diagnosis of hypothyroidism, the NHS finally accepts that I do not have Chronic Fatigue Syndrome.

The issues seem to be:

1. Actually getting a diagnosis.Some GPs treat a test result that comes back within the reference range as evidence that you don't have a problem, without looking where in the range it comes.
2. Getting proper treatment. Levothyroxine does not work for everyone, either because of allergies to the fillers used or because you cannot convert it to the active hormone.
3. Thyroid antibodies feed on gluten, so if you have Hashimoto's Disease, you need to be gluten free, whether or not you are coeliac.

I think we are going to be surprised how many people post on here.

[Drhamsterstortoise]

Hi there.Underactive thyroid here.Exhausted today and slept for three hours.On 100mg of levo.Dose was altered during pregnancy.Tsh was recently 0.02.Had been on 125mg.On my own with two dcs during the week.youngest is 5 months.Bfeeding 2 to 3 times s night.Exhausted by the time weekend comes.Going to the gym four times a week and taking iron and vit d.I really think dp and mil think I'm lazy!Its very frustrating isn't it.Not going back to work for another few months luckily but dreading it.

[GhouldenGreen]

RockinD, thyroid antibodies feed on gluten? Wow! I had no idea there was a link. Do you have any more info on that? Certainly means I will ask for my antibodies to be tested then if there is something I can do to help get better! And you are so right, yeghouls it does make a difference to know that the way you feel has a very real physical cause.

I have been exceptionally lucky to be diagnosed quickly, I can see that. Sorry to see so many frustrated people on here who have been waiting a long time to be taken seriously.

[yeghoulsandlittledevils]

RockinD You're welcome! I didn't know about your 3rd point. I do find it helps to cut down on/reduce gluten and carbs but at some point I'd like to get tested for coeliac disease as well and the test doesn't work if you've already cut gluten out of your diet.

Drhamstertortoise welcome
Like you, I was exhausted, anxious and found my TSH plummeted on 100/125 mcgs levothyroxine, so stepped it back down. When I first started taking it, it did make such a difference for a few hours a day, so I thought if I took more that it would mean I could feel better more & more of the time. It doesn't seem to work like that though, does it!? Yes, frustrating is the word. I am sure you will find you will feel better on a lower dose. When did you start taking levo, is it since pregnancy, or have you needed a higher dose while pregnant?

[Rufus44]

Just googled that gluten thing, very interesting. Might bring that up at my review as well, I have heard its not a good idea to go gluten free unless you have been diagnosed wih a problem, don't know how true that is

[Jacksterbear]

Hello, please may I join you? I have hypothyroidism and have been on thyroxine for nearly 20 years; am currently on 150 mcg. Still feel exhausted all the time!

yeghouls I'm interested in what you said about premature birth as my dcs were born at 35 and 36 weeks and I've never been given a reason - can you explain more?

[Jitterbugjules]

Hello, great thread! I have been feeling unwell since I had my DS 5 years ago, I have a enlarged thyroid and antibodies of around 700 but as TSH is always around
2.8, GP and Endo say there is nothing they can do until my thyroid gives up and I go into recognised hypo levels, which could take years. Currently trying a gluten free diet to see if it helps, fingers crossed!

[Drhamsterstortoise]

Hi yeghouls.It was diagnosed after the birth of my first dd four and a half years ago.I thought it was just the exhaustion of motherhood!It got to the point where I felt dizzy at the supermarket and struggled to lift baby out of the cot.Doctor noticed a huge goitre on my neck.Anyway was put on 125mg when pregnant with second dd.Suffered from hyperemisis but pregnancy was fine.Very low iron too.My dad and granny have it too.Was prescribed anti depressants when I returned to work after first dd.Didnt feel down at all though just frustration and tiredness.Doctor reckoned I was tired because I had depression.I feel like I can do anything after I get a good nights sleep though!

[RubySparks]

Hi another hypothyroid one here, diagnosed with hashimoto's, think it does make a difference as hashis can go between overactive and u detective which might explain why getting right dose can be difficult. I'm on 75 now, 50 was too low so I struggled for ages until finally a doc increased it, however they went up to 100 which was too much too soon so like goldilocks for now, 75 seems just right for me!

However before thyroid diagnosis, I found out I have coeliac disease so I do avoid all forms of gluten.

I also had an earliest menopause, starting around 42/43 which seems to be connected to the other diagnoses. So on HRT for that.

I have been tired in varying degrees for about 3 years.... Ups and downs along the way, worst was massive energy crash at beginning of 2012 and having several weeks off work, thought I would never feel normal again. It was a long hard road back to some kind of normal. I still work but only because I am main earner and can work from home some of the time.

Glad to have found this thread!

[yeghoulsandlittledevils]

Welcome Jacksterbear
I have just had a look for links to the studies and articles I was reading about this, but they are eluding me this evening (it's got past the point when my brain works much!) will have another look another time! There have been studies (mainly in America) which show a connection between women who have had pre-eclampsia/eclampsia in pregnancy and hypothyroidism developing in later life. Other studuies/ statistics show it can also be connected to difficulty conceiving, miscarriages and other complications in pregnancy.

[yeghoulsandlittledevils]

Jitterbugjules welcome!

I am surprised they have left you with an enlarged thyroid! I just don't know what to say to that. Stay with us and keep us up to date with how you get on (that goes for everyone else, too!)

[yeghoulsandlittledevils]

Drham It sounds as though you have had a tough time. Glad you joined us. I don't know anything about goitres, was yours removed?

[yeghoulsandlittledevils]

Hello RubySparks and welcome!

I think you are probably right about hashimotos being difficult to treat until it pretty much destroys the thyroid. The difficulty is hyperthyroidism being so dangerous (life threatening) while hypothyroidism, although often debilitating tends not to be regarded as a threat to life. (Although there must be exceptions, such as cancers and rare conditions affecting other organs).

[Drhamsterstortoise]

Yeghouls its good to talk to others in the same boat .A goitre-think its an enlarged gland on the front of the neck?Went for an ultrasound and it was fine.Its interesting to read about the gluten connection.Just trying to do all I can to feel more energised!