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.

[Jacksterbear]

Thanks for the childbirth info, yeghouls.

[Fairydogmother]

Hi there I have had Hashimoto's since the age of 10 and I'm now 34. Currently 38 weeks pregnant!

I've been quite stable for a number of years until January this year when I went a bit hyper on 200mg. Think that was due to weight loss and coming off the pill tho. Dose reduced to 175 and then 150 and I've been perfect ever since. Have had a text book pregnancy and booked for induction due to PGP next Wednesday.

For those newly diagnosed bear in mind that taking an oral contraceptive and also coming into winter will affect your need for thyroxine. Generally I find I need a little extra over winter. Make sure you get under the care of a good endo and stick to them like glue! Most gps really don't have the knowledge. Also I find I know when my bloods aren't right so act upon your gut instinct too.

I've just accepted that brain fog and tiredness are part of me now (can't remember a time before I was diagnosed!) so I just work round it

[SuddenlySqueamish]

Thank you for setting this thread up.

I have had hypothyroidism my whole life - diagnosed as a very young baby when my grandparents noticed I slept too much. Think my mum thought I was a dream baby as I was her 1st and so quiet but my grandparents had 5 and as I spent a lot of time at theirs, they quickly saw there was a problem.

I feel pretty in tune with it now as I've had it so long - I know when it's a bit out of sync. But like others are saying, dealing with drs can be a problem.

I'm currently on 150mcg which makes me really anxious. Can't go back to 125mcg just yet as it makes me too sluggish and foggy. It's a balancing act to find the right amount.

[Fairydogmother]

Suddenly

I had about a year of alternating doses - 200mg one day and 175 or 150 another day. Kept me really well so might be worth asking about that.

[yeghoulsandlittledevils]

Pobble No, I hadn't heard of prolactinoma, I just looked it up. I see what you mean!
It is possible for problems with the pituitary gland to cause hypothyroidism, yes, so could be the cause of your hypothyroidism.

[RockinD]

The gluten/thyroid connection:

chriskresser.com/the-gluten-thyroid-connection

[yeghoulsandlittledevils]

Welcome Fairydogmother Thanks for the information I am certainly feeling a lot colder again, and noticing the weather getting colder now. I need to wait until next blood test and let the doctor decide what she wants to prescribe, and then ask about weight loss, nutrition and other symptoms.

Welcome Suddenly How good that your grandparents spotted that you were sleeping too much when you were a baby! As Fairydogmother said, you could get doses of 125mcg and separate doses of 25mcg so that you can take 150 every other day, or every 3rd day as you feel the need.

[awaynboilyurheid]

Had eaten a lot of gluten foods yesterday thinking I would be fine but was unwell so back to looking at gluten free again so thanks RockinD
for the great link will need to be stricter with myself as its not worth it .

[awaynboilyurheid]

therein was also tested for coeliac but came back negative but this can happen as damage might not be not bad enough at the moment apparently but you can still be gluten intolerant , strong links being made to gluten and thyroid disorders so for me makes sense to try gluten free thought I could maybe just reduce it but doesnt seem to be the way .

[PoshPenny]

I may not have thyroid problem, but I think I do. my TSH and T4 levels within range so as far as dr concerned I Don't have a problem, despite the symptoms which are/were a lengthy list. got tested for coeliac, but that came back negative. Ferritin at bottom of range, B12 and folate in range but below optimum. red blood cells good, white blood cells count bumping along at bottom of range, the white ones are the indicators of something auto immune going on. doctors say I don't have a problem because I'm in range even though I know I'm well under par. I decided to try gluten free because I had so many of the coeliac symptoms and felt so crap I didn't have much to lose, and I definitely feel better. IBS tons better, lost a few lbs without trying, more energy, skin no longer dry and itchy. I guess I am gluten intolerant. there is some oriental saying about all disease starts in the gut, this kind of thing does make me wonder...

trouble is, peri menopause, IBS, hypothyroid, iron deficiency all have similar symptoms...

hoping I am onwards and upwards now, but not holding my breath. bitterly disappointed by the lack of support and frankly ignorance shown by my doctors though.

[drawsofdrawers]

Nice to see this thread. I am struggling at the moment and yet I struggle to go to sleep.

Work is a drain. I've had enough by 1pm. Sadly I can't afford to work less.

I'll come back and read the thread properly

[digerd]

yeg
Yes they did reduce the carbimazole until they said Thyroid was acting normally. But did say I was only in remission and odds were it would return in about 18 months-2 years.
It did. Went on the Carbimazole again and 6 months later had the sub-total Thyroidectomy.
Was given no Thyroxine until only 22 years later when a blood test showed I was slightly underactive and put on 50mcs which I still take. TSH is now 4.8, but as elderly and have a heart problem with a high pulse rate GP and I prefer not to increase the levo.

[digerd]

I had a test in Germany that I'd not had in UK - DR showed great surprise/shock. Called a TRH blood test which tests the functioning of the Pituary with the Thyroid. Mine was abnormal.
Blood is taken, then an injection of TRH is given. 30 minutes later blood taken again.

[yeghoulsandlittledevils]

PoshPenny Welcome. [Flowers] I could have written that 20 years ago! It might not be 'therapeutic' but if I were you (and I had the knowledge then that I do now) I would be asking for a hashimotos auto immune tests. They won't give you any thyroxine until your TSH tests above range but surely it helps to know one way or the other?

[RubySparks]

Agree that winter seems to mean increased need for thyroxine, I always feel worse in winter! Though that could be related to low vitamin d too.

[yeghoulsandlittledevils]

PoshPenny

[yeghoulsandlittledevils]

drawsofdrawers Welcome.

Ive just heard on the radio that there could be a causal link between sleeplessness and alzheimers (rather than sleeplessness being a symptom).
Now the morning musings start (don't mind me, I get these delusions of brilliance while waking up.) Just imagining if there were a good reason, of national importance, to test people for hashimotos and find new ways to treat it.

[Fairydogmother]

I've been on a vitamin since getting pregnant and I have to say I feel better for it! One without iodine of course!

I successfully lost 3 stone last year in 5 months by calorie counting and taking up running so those struggling with weight it can be done! Then the weight loss pushed me hyper due to my much lower body mass but that was easily corrected! If you're on the right dose you really should be feeling much better and be able to work through tiredness with short rest periods x

[awaynboilyurheid]

Poshpenny "ALL diseases begin in the gut" Hippocrates. It makes a lot of sense as the gut has to do with so much more than I realised Im reading root cause of hashimotos thyroiditis by Izabella Wentz , quote the intestine is responsible for helping the immune system recognise foreign invaders from self antigens , thus facilitating the control of pathogens and preventing auto immune reactions. When gut lining is compromised bacteria that would not otherwise cross the intestinal barrier enter the circulation and cause inflammation. She believes this leaky gut is caused by gluten and cheaper faster ways of making bread etc
all the conditions you mention IBS hypothyroid iron deficiency and meno are all linked in this perfect storm that leads to our health problems but you will have to push to get a referral, crazy isnt it? as for the ignorance by GP's and endocrinologists in ignoring loads of research that shows you can have "normal " ranges of tests and still be ill well it really is unbelievable but also very frustrating .Someone told me when diagnosed you will have to become your own expert, and this with brain fog too.

[PoshPenny]

Thank you, You are making me feel "helped and supported". Hippocrates was not oriental, oops!

[awaynboilyurheid]

Ha! maybe on his mothers side ? x

[yeghoulsandlittledevils]

Away

[SuddenlySqueamish]

Thanks for the suggestions about alternating. I'm due a new prescription so I might speak to my Dr about this first if I can get an appointment before I run out

[yeghoulsandlittledevils]

I've managed to get prescriptions tweaked with a call back from a doctor instead of an appointment, you could see if they would do that, squeamish.