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.

[delasi]

RockinD An endo saying over 10?!

Ok, so this is Wikipedia, but still:

Reference ranges for TSH may vary slightly, depending on the method of analysis, and do not necessarily equate to cut-offs for diagnosing thyroid dysfunction. In the UK, guidelines issued by the Association for Clinical Biochemistry suggest a reference range of 0.4-4.5 mIU/L. The National Academy of Clinical Biochemistry (NACB) stated that it expected the reference range for adults to be reduced to 0.4–2.5 µIU/mL, because research had shown that adults with an initially measured TSH level of over 2.0 µIU/mL had "an increased odds ratio of developing hypothyroidism over the [following] 20 years, especially if thyroid antibodies were elevated".

References:
NACB
UK Guidelines

PS Sorry RockinD - not directing this at you specifically! This is more to provide info to anyone who might be interested

[RockinD]

No offence taken!

One day I will tell the tale of my 14 endo visits for, in the end, no result!

[digerd]

It took quite a while even my op for the hyper to get back to normal and was still bloated for months afterwards despite Endo telling me I was fine. I was not given Thyroxine as some people have on MN.
I still wonder how they knew exactly how much to cut off to get it to behave normally. But it did eventually. Can't remember exactly . Not helped by my getting an allergy to the metal staples and having my scar slit open both ends with no anaesthetic . It was 1974 not the middle ages Staples are not used now-a-days .

[digerd]

after my op

[Hattie23]

delasi thankyou for your reply. I'm sorry to hear that you are suffering from pain. I am learning so much so quickly about this condition. I'm seeing a physio on the 30th in case they can help at all. I thought it could be work / stress related at first.

Its interesting to hear how different areas have different normal ranges. I'm very lucky in that my GP automatically printed off my results and went through them with me.

I guess it's going to be a long old process.

[RubySparks]

I sympathise drawofdrawers - I too struggle with work but have mostly managed to keep working, helped by being able to work from home some days and frankly doing less than I would have done before. The exhaustion can be terrible but I always feel the worst thing is my brain not working properly! I was coming on here to ask if anyone thinks their ability to think has been permanently affected by thyroid disease or alternatively if they have somehow recovered from 'brain fog'?

[amandaburfoot]

hi everyone, I had my own thread but seeing as though this is specifically for those with thyroid problems I thought it best to post here.
Thank you to all that gave me advice, I have been indoors a few days now and went to my gp today, he thinks I have hashimotos disease and am being referred as an urgent case to an endocrinologist.
I've had awful pain today and was close to calling an ambulance when the codiene started to take effect (had to take 3 though).
Fingers crossed it won't take long and I can walk my dog and play with my 6 yr old again, it really helps to talk to people going through the same thing.
I wish you all well.
Amanda x

[ballstoit]

Yeghouls, the radioactive iodine was done on NHS, and may consultant said I could have it done on NHS again if I became very overactive again. I don't think I will though, can't face the thought of missing my DC for a month again

I don't get on brilliantly with carbimazole, had swollen joints and itchiness, although this did settle a little.

The weight has been, and continues to be, a struggle. I've been doing Slimming World, and have a lovely consultant who is supportive without being patronising.

I've just been getting life insurance sorted and am a bit , that I've had a 100% loading (so basically doubled my premiums), for the heart valve issue that was caused by being overactive for so long...wonder if my gp will contribute towards the extra I'm paying

[yeghoulsandlittledevils]

Amanda Thanks for the update, glad they are taking your case seriously. Keep us updated.

[yeghoulsandlittledevils]

Thanks ballstoit that is all good to know, and could be helpful for someone experiencing hyperthyroid symptoms and wondering what the treatment options are. :)

[hellyfucker]

Another hypo here. I have antibodies so I assume that means it is Hashimotos? The gluten thing is interesting, I had issues with gluten long before my thryoid problem became apparent. Now I cannot tolerate any gluten at all. I think I am probably coeliac but can't be tested as I don't eat gluten. I wonder if gluten intolerance could cause the thyroid problem, the article linked to seemed to suggest so.

[hellyfucker]

Oh and I also had pre-eclampsia, as did my mother who is also hypothyroid.

[yeghoulsandlittledevils]

Hello Hellyfucker Welcome! Another name for hashimotos is autoimmune thyroiditis, so yes. (There are lots of other auto immune conditions such as coeliac disease and arthritis which some people with hashimotos have a predisposition/vulnerability to).

Thanks for the info about your family history of pre-eclampsia.

[RockinD]

Today I have been to a conference about thyroid disease. I have seen some very very sick people who are totally unable to get the treatment they need from the NHS, either in primary or secondary care. In one case, NHS protocols prevent a consultant from giving his patient the treatment he knows she needs. Many of these people have held responsible jobs, but are unlikely ever to work or contribute to our economy, again.

I have also seen some fit, healthy people, who are self-medicating. They are buying thyroid drugs and others, including in some cases steroids, off the internet and learning how to use them to keep themselves healthy.

Thyroid disease is very common - the number of posts on here in less than a week shows that - and the way thyroid conditions are diagnosed and treated in the UK is a national scandal.

How would MNHQ feel about supporting a campaign for better diagnosis and more flexible treatment?

Thank you.

[awaynboilyurheid]

Great idea Rockin a national campaign is what is required . Sick thyroid patients shouldn't all have to reinvent the wheel, everyone with low thyroid is left trying to understand their own blood results and going on the internet, investigating treatments to seek better health so they can function, work and have some life back the NHS has abandoned all pretense of caring/treating.

Hospital endocrinologists refuse to see patients who are blatantly showing describing /symptoms that they are the supposed experts in. I was told results normal no appointment would be given GP sent me the letter back from the hospital with the refusal to see me on it. had to go private to discover my thyroid was under attack from my own anti bodies found in a simple blood test, this took a 10 minute consultation including blood tests This test was never done by any GP that I asked for help from, despite taking lists of symptoms.

I really believe the NHS should just come out and say we are no longer treating patients with low thyroid anymore in fact we don't need to ever see you just send us the blood results and we will treat those we decide on and then with only one kind of medicine. At least then they would be telling the truth

[hellymelly]

I also was only tested for antibodies after years and years of trips to the GP saying that I thought my thyroid wasn't functioning well. (As I have a hypo mother I knew the signs). It took a big dip when my TSH went up to 22 before I was put on thyroxine. I had tried taking Amour through a private doc a year or so before, but it sent me very quickly hyper, so I didn't stick with it.

[awaynboilyurheid]

oh no helly was hoping these NDT treatments like Armour would be good I am currently waiting for another appt for private Doc and thought he might put me on that too. Mum and aunt both hypo my mum was convinced I had hypo thyroid even when Drs kept saying it was fine threatened to come with me to tell them !in the end she was right (sadly)

[hellymelly]

Amour works really well for lots of people I think. With me, I assume that I was only slightly underactive at the time, and the amour might have given me a bit of a rush of T3. I also have the sort of sensitive system that over-reacts to things generally. I wonder about changing from levo to Amour now that I am much more underactive, but don't have the energy to start changing things yet, can't face the stress of it.

[delasi]

Wow Rockin, encouraged to hear that at least there are conferences on thyroid disease, and that people like you are present to hopefully talk to others about the patient experience (or even present on the matter, don't want to assume exactly your level of involvement!).

It would be great to see major improvements in this area. As you say, it's a medically common problem, but it's not seen in the same way as some other chronic autoimmune problems. Since becoming diagnosed 2 years ago I have known of 7 other people with hypothyroidism and 2 others with hyperthyroidism - being someone who doesn't do major social circles, that's rather a high number. And those are the only the ones who have told me, there may well be others. When I got diagnosed and was still struggling a lot (as in, more than at current), these people asked me what was going on and they then responded with, "Yes, I have that too" and went on to tell me how terrible it is, the lack of good treatment they get. One struggled a lot with fertility issues as a result of poor management, another had been diagnosed over 25 years ago and still had a daily struggle with tiredness and 'brain fog' that was frustrating her to no end. Every single one of these people, myself too, are people with jobs, families, studies, all sorts of important commitments, but struggling to manage them because of this supposedly 'simple' illness.

I knew of a med student who said (oddly, it must have been an odd type of discussion) that if they had to choose one illness to live with, it would by hypothyroidism, because you can just take a pill each day and be back to normal If that's what they're being taught then no wonder the level of care is patchy at best and shockingly bad - sometimes dangerously so - at worst.

[digerd]

ballstoit
I too went undiagnosed for Hyper for 2 years at least. My heart valve disease was also missed despite having abnormal ECGs since 2003. Eventually diagnosed privately in 2007. I shall need a replacement aortic heart valve in the non too distant future.
I did not think to sue them as the heart valve damage was disovered 20 years later but was already more serious than a 'mild' stage.

[awaynboilyurheid]

delasi when I got my diagnosis everyone said once your on thyroxine you'll be back to your normal busy self and I thought that too now I realise its just not like that and its beginning to dawn slowly on my family too , wish I could meet that med students lecturers now would introduce them to my aunt and mum both hypo went on to develop another auto immune disease, rheumatoid arthritis .

[SnowieBear]

Hi there, another hypo here, diagnosed in my late 20s, I'm now 41 and currently on 100mgs a day.

For those of you in severe pain, it's worth having a check for fibromyalgia... I developed this after DS's birth nearly 8 years ago and have only now been diagnosed formally. They seem to go together -the depression (on 20mg citalopram to keep me going), fatigue, pain, cold sensitivity, etc. If anyone would like to discuss whether their symptoms check for it, I'm happy to assist.

[RockinD]

snowie, one school of thought says that your fibro and your depression will go if you are properly treated, in fact one of the doctors at yesterday's conference said that to someone in the Q & A session.

Do you know what your numbers look like?

[hellymelly]

I am in pain a lot, back, chest, abdomen. Could it be fibromalgia then? I have been back and forth to the GP. Abdomenal pain could be due to a fibroid that has just been discovered, but the chest/back pain are a mystery.

[hellymelly]

Another query- my 82 year old mother is in a care home, she recently moved to one near me and they spotted that the previous home had been giving her 200mg levo instead of the 125 she should be on. A chest x-ray this week showed heart enlargement, GP thinks from long term high BP, but could the high dose have contributed? She also has bad osteoporosis, is that connected with hypothyroidism, and if so, what measures can we hypos take to prevent it, if any? Anyone know?