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.

Hello everyone i hope you don't mind me stopping by. First of all good luck to all those newly diagnosed and undergoing treatment.

I was diagnosed with autoimmune throiditis after my ds was born. I was exclusively breastfeeding and he was doing really well until four months in and his weifht tapered off health visitors told me he was prob ready for solids so started him on that and formula. We then discovered he had various allergies and it was only when my dad noticed my goitre i went to the doc. Feel really gutted that i could've carried on bf without the need for solids. It was a very stressful time.

I have to admit i have been very ignorant about my condition. My dh is a gp and reassured me all it was i needed replacement therapy and there was nothing more to it. I then asked him as well as my gp that why i am entitled to free prescriptions am i prone other conditions? Nobody could give me an answer. Since then i've lost half the hair on my head. The last time i went to gp my results were normal. My dh says im stressed etc and up until lastnight i've trusted the 'professionals'. We have been thinking about ttc and from what my dh been telling me i just get monitored alot more when i'm pregnant. My advice from dr. Google tells me that my risks to baby are really high if its not adequately controlled. I am meant to inform doc of ttc so i can be referred to endo, and then as soon as i get BFP i am meant to have an immediate increase in dose meet the increase in throxine demand from baby. I initially planned on simple telling my gp that i'm pregnant and then 'wait' for a referral and bloods but according to the official guidelines i'm meant to do all this pronto as it's crucial for the baby in the first 12 weeks as it wont makes its own thyroxine and it's risk to all sorts of cognitive problems. Never mind the need to monitoring post birth for successful breastfeeding and for someone who is the most pro breastfeeding person i know it os quite depressing that i didn't know all this before and i was going to happily get pregnant and delay increasing my dose and put baby at risk. I shared this info with dh and at first he patronised me like a typical gp saying i ahould be careful about where i get ny info from but when i showed him the official guidelines he held his hands up and says he didn't know.

It has taught me now after three years to use my own initiative and not trust health professionals even my own dh lol. I have bought a few books and have stumbled on these wknderful threads fulls of amazing people here on mumsnet who make these threads to help us all.

I have decided that i really need to know more about screening, what these numbers mean as up til now i hust relied on dh to deal with it. I have decided i need to take control of my condition not just for myself but for any children i may have in the future. Right now i just want to thank everyone and esp yegods for setting up this thread and understanding what we all go through.

Catty x

P.s. sorry for the rant and the bad typos

Catty rant away! I have been trying very hard not to rant about GPs, as we all have to rely on the to a greater or lesser extent. But yes, my DH is very brainy and I've relied on him for far too long to be the brain in our marriage as well as asvise me on things he knows nothing about, so b I can identify with what you're saying! Let's put it down to the brain fog.

Catty, as far as I'm aware the free prescriptions thing applies to anyone who has to be on medication of any kind for life.
Well done for taking control, and all you've found out about thyroid and pregnancy.

Thanks for the support guys! Don't feel so lonely now xx

I think i am gonna book another appointment as I have been on levo for 3 months now 25mg and I do feel better in myself and my last test showed my levels as normal so doc said stay on that and come back in 6 months.
My issue is that we are trying to concieve ( since january but told gp its been 18months as I am 38 ;)) ) doc said it needs to be 2 years ,my bf is gonna get checked after xmas .i have had a scan and 21 day blood test- which is how i found out bout thyroid, otherwise all fine!
He hasnt referred me to anyone but I think I want to be.
Has anyones period changed since starting levo ?
This is my second month of having a very light period only lasting one or 2 days at most .
I am a bit concerned now!

Went to doc today about the pins and needles feeling in feet and legs... Apparently I'm depressed, really fed up of that being the first answer I get! On the other hand could it be right? Does anyone else have treatment for depression as well as thyroid? I know there is a link but had thought if thyroid treated correctly then I wouldn't be depressed?

I am depressed. Having counselling.

I am thinking I might have another auto immune problem beginning as I have other symptoms. Not exactly a cheery thought in itself!

Have you any symptoms of Reynaud 's desease Ruby?

I don't think so, no blue fingers! That's my thinking that this may be another auto immune disease or having hashis that thyroid is in a phase of producing again so levothyroxine dose may be too high or too low... Felt better on 75 rather than 100 but maybe gone too low now?

I'm on 75 and seem to need an extra 25 every few days. I should also be taking my iron and keep forgetting!

lisa if you're trying to conceive, you need to have a look at this and wave it at your GP if he's not following these guidelines.

cks.nice.org.uk/hypothyroidism#!scenariorecommendation:8

Just been on another thread and wanted to make sure our wee support thread started by yeg doesn't disapear. Was thinking I was doing quite well energy wise had just upped to 100 levo for a few weeks but have overdone it and now exhausted and feeling sorry for myself, when I say overdone it just did normal stuff bit christmas shopping, went on night out but forgot I have only so much energy so have crashed today so , insert sweary word here, fed up with this condition .

Hey Away I also crashed at weekend after cleaning/tidying and cinema trip over Friday/Saturday. Really painful legs as well as the pins and needles, GP now referring to neurology as maybe something else causing this.

Ruby its a horrible condition , but sometimes it helps to know I'm not goingmad alone , hope you get appt soon xx

You're not alone, away. Ive decided I've got to try to get to the bottom of what is wrong with me. Even if there is no treatment, at least my family will, know what is going on. I seem so unreliable, emotional and lazy to them, I've got to find out what is causing all tths.

I have been trying to workout what is wrong for 2-3 years, very frustrating to find one condition, then another, get the teatment and still have symptoms that are hard to live with/work with.

I found this site recently

chriskresser.com/the-most-important-thing-you-may-not-know-about-hypothyroidism

and intend to follow up on some of these things after the next investigation, GP said likely to get appointment through by mid January so hoping not long to wait. Pins and needles are constant in legs and other places at the moment. Will keep updating in the hope of finding something of help to others!

Hope you are recovered a little away, I have done 3 days in the office this week and feel just knackered... Hope you get your answers yegods and when you do, tell us!

Hello there - can I join in? Diagnosed by a very perceptive GP 10 years ago with hypothyroidism. Mostly felt ok since but last couple of years unable to shift weight, tired, cold, stiff, forgetful, weak muscles, poor stamina although fit. Results of blood tests put me in the "normal" range, though.

Finally got a sympathetic GP to give me some extra thyroxine this week, though I worry he has prescribed too much. I was on 125mcg and he upped it to 150mcg with another blood test to be done in 8 weeks. Do you all think I should go up to 150mcg daily? Am tempted just to do every other day at first and see how I feel....

Thanks ruby got a bit energy back after 4 days doing very little cannot believe this is me now when I was Mrs 100 miles an hour ,
When I saw Dr Skinner two weeks before he tragically passed away he said he thought with a bit of tweaking he could get me better but wanted to see me in January sadly this will not happen and I can't get in touch with his office yet, to see if he made any notes to my GP really upset when I heard the news so sad for him his family but also, selfish I know, for myself, as he was going to help me and was so knowledgable I really felt like I was back at square one,

willpenn when Dr Skinner advised me to up thyroxine medication he said try 100 one night and 75 the next and it has been better that way he said I should be on least 125 mgs , even though previous endo said 75 was right dose, Dr S said you will never feel better on 75 and he was spot on I was not well on 75,

yegods do you think you might not be converting thyroxine properly? I am no expert jsut read stuff on TPA but some people seem not to get on well on only thyroxine alone and need T3 to convert it , some one told me when I first got it you have to become your own expert and I realised its true the NHS has let us down , never give up I'm not x

dr skinner died

how awful. he was a hero to many of us

Think I am going to stick with every other day and see how it goes. It is really sad about Dr Skinner - I read about him on the internet, incredulous that he was so persecuted by the GMC.

Yes, sorry merci but its been on all the thyroid websites and a picture of him on thyroid Uk one too, , couldnt stop crying the night I found out, so glad on first and it was to be my last appt after I had came out of room and he was taking another pt in I went back over to him , and shook his hand to say thanks for all you do for all of us , he just smiled, so glad I had the chance to meet him, a one of a kind person who stood up to the GMC on behalf of his patients , irreplaceable.

That is such a shame about Dr Skinner and for you, hope you find someone else who can help. Interesting about T3, wondering if that is my problem.

Checking back in as fell of my TIO and thought you'd all disappeared

Still here!

Think we've narrowed down the possibilities of my problems to being not enough iron, and that I need to take extra on some days (before periods, if having lots of exercise over time, low iron in diet for more than a few days.) The iron I take isn't as strong as I thought and I should be taking more of it.

Well on top of the hypothyroid, i have now been diagnosed with ulcerative colitis. Lets hope i don't get the hatrick for auto-immune disorders!!