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.

There are a number of things relating to adrenal glands and pituitary gland etc that can go wrong and throw up a 'normal' TSH. I forget howw the symptoms vary one to another, but might ve worth looking them up on patient.net or nhs website, or somewhere with fuller detail.

Hi everyone. Does anyone have a lipoma? This is a new thing for me and I'm wondering if it's because of my thyroid!

Hi all, what does inflammed thyroid possibly mean? My older sister has just been told that, she has been referred for further tests, meanwhile am v worried, thanks

Inflamed thyroid = "thyroiditis", which is a group of disorders with various causes and disease courses. Some cases of thyroiditis follow a viral infection and can go away on their own without causing any further issues. Some types may progress on to hyper or hypothyroidism. Both hyper and hypo are treatable :)

If you are going to google information about these disorders please stick to reputable sites like the NHS website. There is a LOT of random advice out there, ranging from the unproven to the stupid and dangerous. A lot of this crap is presented as "fact" when there are absolutely no clinical trials or studies backing it up.

I have Graves' disease, but had an radioiodine ablation done in Feb 2013 so am now hypothyroid and reliant on levothyroxine. I am back to feeling as good as I did pre-diagnosis. Thyroid disease is different for everyone. I was on a support group on facebook but don't visit that any more because it's full of doom and gloom and people blaming everything that goes wrong in life on their thyroid!

One thing I will add is that I take selenium- there are a few studies out there that have shown it can be protective against the bulging eyes that can happen with Graves'. That's supposedly down to the antioxidant activity of the selenium mopping up the Graves' antibodies. They aren't great studies, but I'd rather take the selenium in the knowledge that the worst it can do is nothing, and the best that it can do is spare me the potentially disfiguring eye disease.

Tha

Thank u so much for your reply carpe noctem!! I did go on google and got worried so stopped! Seems you have a more than normal life with the disease. I hope it is not serious. She seems to be hypo when she describes her symptoms. Cold, sleepless, back and neck pain,... Did u have any if that ? Thanks again

Fell off my TIO, back later, hope you're all well

Well said Carpe.

Inevitably the internet forums (fora?) are full of people desperate for answers. I know because for years I was one, but the advice I received from some very knowledgeable people now means that I am pretty much well.

Most people don't need that level of support. Like you, they are fine. Most of the others can get well if they put the work in.

I agree with you, there are so many unhappy people out there blaming their thyroids for everything, but I think the late Dr Skinner who said that most of those problems are actually caused by under-medication caused by opver-reliance on blood tests and modern doctors' lack of ability to diagnose on signs and symptoms.

I am still that one looking for answers since Dr Skinners sad passing, its only doom and gloom on other web sites because a lot of us still don't have the correct balance for our condition and we don't feel well. I naively thought I would be one of those that just felt better once on levothyroxine but for me and it seems many others its not that simple, it takes time to find correct dosage and leaves us feeling ill in the meantime As Rockin said undermedication is the main problem and over reliance on blood results not how the patient feels.
Before TSH blood results were discovered Dr's medicated according to symptoms and symptoms are many and varied because the thyroid has such a big effect on whole body systems. Now you could not even see a dr they just want to go by blood results, and tell you how you should feel unlike Dr Skinner. Lolato Hope your sister gets some answers quickly.

Hello folks.

I last popped by in early November when my daughter was first diagnosed with congenital hypothyroidism. She's now three months old, on 37.5mcg of levothyroxine a day and doing just fine. We're off for bloods next week so will see if they think we should increase her dose, but she's developing perfectly. Such a relief!

Thanks for asking after us mumat39 - as you can imagine I have my hands full and can't keep up with the thread as often as us like.

Sorry to hear done if you are having a tough time. Hope you get your levels straight asap.

Anythingnoteverything thanks for popping back in and posting an update. Glad everything is going well. :)

Thanks awaynboily ...sister said they saw a nodule of 24mm diameter, inflammation. Due for a blood test tomorrow am...

Sorry to hear your sister has this, lolato, but it is good that she has been seen and with the right treatment they will be able to help her get better.
yes, thank you CarpeNoctem - brilliant answer!

Thanks, just really hope it is not serious

Another good website is Stop the Thryoid Madness. It has absolutely loads of information on all aspects of thyroid disease and management.

Perhaps some people are a bit "doom and gloom" about thyroid disease, but I think until you have suffered the poor management which can go hand in hand with the illness, it is hard to know how difficult and all-consuming it can be.

The trouble with using T4-only (Thyroxine) to treat anybody who presents as hypothyroid is that that treatment regimen really only helps people who both don't produce enough T4 on their own, and that this is recognised by their pituitary (demonstrated by elevated TSH).

If you also have pituitary problems, or don't convert T4 effectively into T3 (which is the hormone which all of your cells need and use) then taking T4 only may not help.

So, I'm truly delighted for people who are well managed on thyroxine only, but that doesn't apply to all thyroid patients, and them discussing it and trying to come up with solutions together doesn't make them all doom and gloom.

Well said Aurora ! think I am one of those ones! not converting T4 into T3 as mine is the auto immune thyroiditis or Hashis I think its called I dont know why some people always think we all have the same reaction to the drugs .
My mum has arthritis and her sister has it too but ones is much worse than the other and not responding to the same drugs as well, she is quite ill with it , why would my mum then say well I was ok once I got those drugs you should be too, it just doesn't work like that .

However in thyroid disease some people who were fortunate (and believe me I desperately wish it was me, I was so hopeful it would be) think others should automatically respond like them I don't understand it , support sites are for support.

I would suggest everyone who is trying to find out about what is wrong with themselves should do as much research and read around as much as possible, if that is what you want to do. However it isn't necessarily a good idea to do this when worried about a non-dependent relative. It isn't the same, and it is hard to sift through all the information if you are not experiencing the symptoms yourself.

Hi. I've been diagnosed with an underactive thyroid the end of last year and have been taking 50mg levothyroxine since start of January.

My doctor (though normally very good) has been quite funny about blood test levels etc and advice generally. She has said I have to return in April to get blood levels tested again.

I still feel very tired though have been quite busy lately. Have switched to non-fluoride toothpaste. I take my meds first thing in morning I HAVE to have tea so have that afterwards then don't eat for about an hour - breakfast.

What else can I do? Support groups etc. My maternal grandfather had this I think (overactive?) but he had his thyroid removed.

I was relieved when I was diagnosed as for many years I was exhausted a lot with no explanation but I didn't think to get tested besides anaemia (normal) and had awful mood swings.

hi v quick post

definitely join the British thyroid foundation charity helloboys very good advice and access to research etc.

And get onto the Thyroid UK group on www.healthunlocked.com for the information you won't get from the BTA, who are peddling the official line, which is actually why so many people with hypothyroidism are still ill even though they are on treatment.

If you are under 60 and have no symptoms of ischaemic heart disease, 50mcg is not even a starting dose and at this stage of the game you should be re-tested every six weeks. If your GP isn't offering this, present yourself for testing, complete with a list of continuing symptoms.

Your doc also needs to be testing your vitamin B12 and folate, your vitamin D and your ferritin. All of these need to be at optimal levels for your thyroxine to work properly. Oh and if you need to have tea in the morning (I do too), take your thyroxine before you go to bed.

Hi girls

Wondering if you could help me with a quick question, my T4 has come back at 9.1? What should it be ideally? And would that level need treating? My FSH was normal

Thanks

Lauren x

Lauren, to answer your question, you need the range that your local test lab uses (they can differ place to place). You can ask for a print out at your surgery, and they usually charge a bit for photocopying.

RockinD

Yes, you need to have the reference range so you can see where your result falls within it. It’s always a good idea to ask your GP for a print out of your results, with those all important reference ranges so that you can keep an eye on what is happening and perhaps tie in how you feel with the figures. If you’re really @n@l, like me, you can then keep a spreadsheet which you can show to the doc so he can see everything at one go rather than flicking through screens.

Having said that, even allowing for differing ranges, that FT4 is going to be a lot lower than optimal. If it is actually below range, come back and tell us. Normal TSH (I presume that’s what you meant rather than TSH) plus bottom of the range or below range FT4 is an indicator that you need further investigation.

PS thanks for the flowers

Thank you for your answers RockinD.
I just started the thread, and have had a lot of b thanks for that, but without all the helpful posts (both questions and anserws, but particularly answers from people who keep coming back) there wouldn't be any questions here.

So for your replies (and awayboil, delasi and many others whose names I'm forgetting.)