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.

Hattie, sorry to hear that, sounds as though you must have been in a lot of pain. Is there treatment to help ulcerative colitis better/ manage symptoms?

Thanks yegods. Having iv steroids and antibiotics and iv fluids plus a medication specifically for colitis.
Pain now under control thank goodness. Hoping to get all meds oral and get home soon. Lots more research and reading to do now!

Hi, I have an interactive thyroid. Feeling rotten at the moment, had blood test last week to see if I need to change my dose of thyroxin.I bet my Dr will say all is ok, and its not I feel so very ill. I have been experiencing heart palpitations after eating, why is that? Also feel worse if I eat bread so should I stop gluten altogether? Thanks for starting this thread...:)

Do you mean underactive (rather than interactive)?
Your doctor will let you know what the test results say about your thyroid. If they are normal, see your doctor about how you feel, it might be something else. It sounds as though your dose needs to be lowered slightly, but your doctor will diagnose the problem.

Hattie Hope you have lots of support and some fantastic docs, there are new meds in the field now too (eg biologics) to help so that the old system of treating these things (steroids & surgery) doesn't always have to be the case (this is going based on my knowledgeof Crohns, obviously there are difference with UC so maybe it's not exactly the same). Crohns & Colitis UK has some useful info if you haven't already been on there and you could be eligible for DLA/PIP to help with other costs if you're not already in receipt.

Doing okay myself, more energy than before and tests are good, I had some awful symptoms for months and my GP is wondering if it might have been something viral as everything else is clear (did lots of tests!). The old niggly problems are still very present though, nails keep breaking, skin very dry and weight is doing its own thing regardless of what I do which is a bit annoying. I might have to try something stricter in order to lose a little. Also have continued muscular issues; had tenosynovitis in one wrist, largely treated but flares up sometimes, finally confirmed chest pain is costochondritis, and continue to get aches and pains all over no matter what.

Sorry to hear you have got so many unresolved problems, delasi. Hope there is a way to het to the bottom of it and the new year brings you new answers.

Thankyou delasi
I don't want to derail the thread from thyroid to UC but may i ask what DLA / PIP stand for please?

I hope you are getting your symptoms more under control now? My tsh went doo-lally again given the recent problems - when i was in hospital they changed my dose back to 50mg

Bloods again in 3 weeks

Hattie DLA is Disability Living Allowance, and PIP is Personal Independence Payment. In brief, there are 2 categories of DLA - care and mobility - that get broken down further (care has 3 rates - high, middle, low - mobility I can't remember but has either 2 or 3 along the same lines). UC can interfere with one's health to the extent that extra financial support may be needed; eg, using taxis more, having to reduce hours at work, etc. So one can be assessed for and potentially receive DLA; it isn't important as such if you are mobile or can still work, it's about the impact like not being able to work as much as before, or having days where you're not mobile.

PIP is the new system to replace DLA because the government want to get everyone off disability benefits. I don't know exactly how it's configured but I think it's similar, the government have said it should be more wide-ranging to encompass illnesses not previously given enough consideration esp. MH issues, I think if one were to apply new now it would be for PIP and not DLA as everyone on DLA is gradually having their benefit stopped and being pointed in the direction of PIP for a new application.

Assessment for this benefit is notoriously skewed. I don't remember the exact number, but something like 40% of rejected applicants appeal, and of that 40% something like 60-70% have their application approved on appeal. Because you're assessed by a person with a clipboard and some tick boxes, they don't necessarily look at your whole wellbeing, the opinions of consultants, your medical history yes, I have problems with the way the system is managed!. Nonetheless it is always worth going for these things if they can be helpful in any way, and to fight your corner if you get turned away.

Ahem, apologies for the incredibly long intro to disability benefits!

In thyroid news... Unfortunately symptoms aren't improving, going downhill a bit and feels like a 'flare up' - I seem to get this, times when I'm very well and then a period of everything going at once. It seems my entire body is aching now, from headaches to joint pain and muscle fatigue, and I just feel tired. Have been wondering about the link between fibromyalgia and hypothyroidism, wondering if my problems are related to this, the regular flare ups of joint pain etc as well as the ongoing pains that I have. I haven't supplemented with high strength D for a while as I was just sidetracked before stocking up on more, bought some today and hope it might help a little...?

I think I'm going to have to go back to my GP some time soon, he's very good and always listens to my concerns and acts on them, so I think he'd be open to my muscle joint queries and he has already been treating me for the wrist and chest issues so he's already aware. I'm only in my 20s but I feel like a creaky old lady sometimes!

Did i say yet what I have discovered my flare ups of muscle ache/ fatigue/ unwell feeling/ depression is due to? It's anaemia. The GP broke down the causes of anaemia and although I get enough from my diet and do not have pernicious anaemia (low vitamin B12) the hashimotos probably accounts for iron being used up by my immune system. Then, if I add any exercise as well (just swimming a few lengths or walking a couple of miles) this will use up even more. So that is why it is worse when I am more active.

So he has prescribed me a huge bottle of the liquid iron I take and now I take a couple of spoons extra before a walk, and after as well if I feel I need it. It is working!:) I'm also eating lots of prunes and dried figs, drinking extra water and coffee, and it has gelped enormously. This holiday I've been able to manage 5-6 mile walks again, with just a bit of muscle fatigue which has gone by the morning.

yegods Thanks for sharing that, I'll put that to the GP. When they do my bloods they usually check iron too but I know I've also always been a bit on the low side, might be worth trying it out. Thinking back to when I was pg, they put me on a high dose of iron and I don't remember having these kinds of pains (had back ache from pg but not the same joint and muscle issues). Never made the link or comparison before.

I think, because I thought there was something else going on, previous GP I saw reduced my prescribed iron. It really had a nasty effect. But when I had lots of exercise it just wiped me out. Joints very painful, malaise, depressed, etc. I feel I need exercise, it's an important part of getting healthy and keeping mentally stable. I've started to do a circular walk of 2-3 miles every day to build up some strength and lose a bit of weight/flab and just 'be' a part of my local community. I couldn't do this before, but with the extra iron I'm finding it is possible.

Hello. I've been on MN a while now and have only just found you all.

I was diagnosed with Hashimoto's about 3 months after the birth of dc1, 6.5 years ago. I had to go for a scan as I had a goitre and they found 1nodule in my thyroid so was under the care of a brilliant doctor at the local hospital. However brilliant he was, he never once told me that I should stop eating gluten.

I have had issues with digestion since before having my dc, but was tested and found to be negative for Celiac disease.

I have had a feeling that I shouldn't eat the stuff but am a sweet food carb junkie and have failed everytime I have tried to do this.

So, are there any idiots guides to how to go gluten free? Seriously, imagine the simplest person you've ever met or seen or heard of and multiply their simple-ness by ooooh a million, and that's me.

I was signed off by the consultant after 3 years when they discovered another nodule which he said meant I had a multi nodule thyroid gland, which I think is better than having just a single one.

Th consultant figured that all my aches and pains, even when blood tests were within range, was due to a very serious Vit D deficiency. My gp gave me a booster for this and the next day I felt amazing. I was told that was probably just psychosomatic, but really I felt human again. The consultant told me that I should take 2000iu or Vit D everyday for the rest of my life.

My GP said that I didn't need to. I shouldn't have listened to him. At the moment I need to start supplementing with VIt D again, as I feel like tin man and all rusty whenever I get up even if I've only been sitting for a few minutes. My knew creak, my feet hurt and I even wake up aching and tired.

Recently I have been feeling really depressed, and only seem to find comfort in junk food. I have been to the gp for a few blood tests and each time I am told that my thyroid levels are normal. Finally I dug out the letters rom the consultant and he suggested that I ought to be on a TSH level as close to zero as possible. I went armed with this info, and the gp then looked at the history of my TSH levels and said ,oh yes, they have been creeping up' They were at 3.?? a few weeks ago.

I also have a goitre on the other side now, and that seems to be pushing on my voice box, and was making me a bit hoarse.

I am so so angry at the gp as he has been treating my blood results and not my symptoms.

I am having counselling for my depression and I think I may be eating rubbish as a way of self harming. So if anyone can help me figure out what I should eat and when etc that excludes gluten I would be very very grateful.

I have just ordered some Epsom salts and will be bathing once a day in that to try and increase my magnesium levels. I'm also on iron tablets as am very anaemic.

I think all of my ailments are all related to each other, so if there are any other things that you can recommend that might help in addition to giving up gluten, I would be very grateful.

Sorry for the rant but it's good to let it all out and if you got this far, thanks for reading.

Oh dear, I sound like such a whinge bag! Sorry. I'm still a bit angry at the gp.

Any, how is your little one doing? Hope all is okay.

Good luck to anyone who is going through the slow process to get your dosages right. If you are new to this and don't feel 'right', then please keep talking to your gp's and ask for a referral to a specialist if yo get no joy, as it's not always as simp,up as popping a levothyroxine pill and everything will be well for everyone.

OP, thankyou for starting this thread. I'm just working my way through it and have picked up lots of info that I hadn't realised. I always take my thyroxine at night and was told it didn't matter, but I know now to not take it the night before my next blood test.

Xxx

Hello, Mumat39, thanks for joining us!

If I were you, before cutting out gluten altogether, I'd try cutting down, and changing over to wholemeal breads and flour, wholegrain pastas and rice, couscous and unrefined sugar etc. I find it really helps a lot to eat less bread, pastry and white pasta.

If you do want to cut out gluten, it's bread, cereals, wheat flour products and pasta mainly. There are substitutes you can buy from the 'free from' sections at supermarkets and hwalth food shops, but I find it easier to just cut down on my overall consumption.

How are your iron levels?

I think I might try vit D supplements, at least during winter, as my joints are pretty achy (but I probably won't need a really high dose as it hasn't come up as low in any tests so far). Got to be worth a try to stop the aches and ppais. I too feel rusty!

Mumat39, I also tried gluten free was v strict for two weeks and stomach problems completely settled, as yegods says I you can use gluten free bread rolls etc from tesco ,and read labels , over Christmas was alot bit more relaxed but things have been ok.

Also taking iron , have always had anaemia so now just decided to take iron on alternate days .

Dr Skinner, a wonderful Dr (sadly recently passed away,)when I saw him said to start taking Vit B12, so i have got a spray from holland and Barrett.I think he told most of his Hashis pts to take this.

I am now on Levo thyroxine 100 and 125 alternate nights slightly more energy but cant decide if that was because I was off work over Christmas was starting to feel/look better but back 2 days and exhausted tonight .
Agree about sugar have a very sweet tooth but agree all my ailments probably related so going to try to cut down, will not be easy (lots of lovely christmas chocolate still to eat)

Another tip I was given was to go on Celiacs sites to get advice on going gluten free as although test for that condition can come back negative, gluten sensitivity is strongly linked to Hashi's . There is so much with this condition we are all learning, thanks to yegods we have this site xx

Mumat39 If it has been a few years since your test for coeliac perhaps you should ask to do it again. It is important not to give up gluten if you are being tested again as it needs to be in your system for the antibodies to show up.

I'm a bit overwhelmed by this thread as so much knowledge in it but nearly in tears as think this could finally explain the strange tiredness that makes every day so hard as I have to pretend to be ok for our young DC.

I have my first specific GP appointment on Fri and please can I ask where to start as should I just ask for thyroid tests and explain why? As well as B12/ vitamin d? I have been in repeatedly for unusual tiredness and mentioned my gluten intolerance starting 6 years ago (soon after dc1s birth) and lethargy, constipation but they never suggested thyroid. I have the driest skin so am hopeful I at least can do something if I know the cause of all this but it sounds like following GP's advice can be a minefield...

Thanks if anyone has time to reply especially as it must be boring to explain the basics again

Wow! Thanks for all the replies! And apologies once again for my grumpy rant before. I thought I had killed the thread so I reported my post to MNHQ as I felt awful.

I want to cry now and give you all a big hug!

Thank you for talking to me.

Regarding Gluten, I have been tested about 3 times in the last 2 years and each time it's come back as negative. I annoy myself as I know I shouldn't eat it yet I do and I can't seem to help myself. For example, I read The Thyroid Alternative where I found out about Hashimoto's and the link to gluten. Then I found you lovely peeps last night and thought right, today's the day that I WILL change. I got to about 2 o'clock before I caved and scoffed my face on biscuits. I was thinking well, if I eat them then they won't be there anymore. Even as I ate them I was thinking hmmm they're not that great but it was a bit like a twig lets moment where I couldn't decide whether they did taste odd, so I carried on, to make sure they did . If I was Miranda in Miranda, I would look to the camera and mouth ' WHY!!!'

Lovepancakes, hi there. Sorry you're feeling like this.

Here's a link to the NHS page which lists out some of the symptoms so it might be worth checking which of these apply and then going along with that information.

On the diagnosis tab of the page I've linked to, the is a list of the standard test that they should run and also explains a bit about why.

Other things that you could ask to be tested for are:
Iron levels
Full blood count

Vit D is really important especially if you're like me and tend to cover up always, not matter how hot it gets. A lot of people do get sun exposure but contract the effects on Vit D creation by covering up with suncream.

I am not medically trained but I think we all need to take a Vit D supplement in this country except on sunny days where you might make enough if you expose more skin. I read somewhere that you can make enough Vit D if you sunbathe in the nude for 30 minutes at midday, on a sunny day. Not many of us would do that but it goes to show that most days most people don't make enough.

Magnesium is another important mineral, but not sure if they can test for this.

Under NHS choices your doctor has to do as you ask, so you may have to demand these tests, so going in armed with any info is good. My mum had to insist on having her thyroid checked after years of feeling tired, putting on weight, etc. her gp did listen and did the test. My mum also has hypothyroidism, so gps don't alway pick it up straight away.

Also, it may be that you have something else, like chronic fatigue or ME but it makes sense to have your thyroid checked.

Good luck. Sorry for my long ramble, but it's rotten feeling like this and not hating any answers.

Xxx

Not having

Hi all, sorry for no specific response (read posts on phone and can't remember to whom I'm directing my various points!) but here's some stuff!

Vits & tests: D, B12, folic acid, iron. Many hypothyroid patients are deficient in one, several or all of these. If not done automatically, ask for these to be screened alongside thyroid function (especially if you're still symptomatic).

Taking meds: it is best to take meds around the same time each day, every day. It's up to you when you do this, but bear in mind - they shouldn't be taken with iron or caffeine as this affects absorption, and they are best taken on an empty stomach with just water. (personally, I take them first thing with my vitamins and have breakfast about an hour later. When I was on iron previously, I took my iron & vits at night and the levo in the morning). Some people say vit D also affects absorption but I haven't found any further info on this.

Personal experience: I started throwing everything at my thyroid in desperation - folic 400u, iron 210mg ferrous fumarate, D 25mg and B12 high strength. I was still struggling but all screens came back clear, so I asked my GP for advice. He is very helpful and lists, and suggested the following:
Emphasis on carbs like oats & sweet potato (slow burning, low GI)
Mainly white meat & fish
Plenty fruit and veg
Oat-based snacks and fruit if peckish between meals
Plenty water
Limit caffeine
The idea was to follow this for at least 4 days a week and not to worry so much the other 3; the average would be 5/2 or if really wanted then 6:1.

On doing this, I lost weight and my energy levels improved. He also told me to forget the vits for now as I needed to sort out my diet first - I wasn't unhealthy before, but I wasn't making the most of my meals and would 'crash' on sweet things when tiredness hit; I think someone upthread mentioned about eating things and not even liking them, or eating rubbish because they feel tired and low, I understand completely!

At current I will admit that I haven't been following it strictly largely due to a separate health issue and I just got all miserable and lazy with my food. I'm now currently in the middle - I largely follow it, although I have white rice regularly (it's the main staple in our house), but personally white rice works well for me and I feel well on it. Too many white potatoes and bread and I get sluggish. Also been having lots of pulses and sweet potatoes, plenty veg, lots of oats etc. Wholegrain bread works better for me than white, but I like white sometimes so I still buy it sometimes. Feeling better energy-wise since I started being sensible again, but as mentioned upthread my joints and whatnot are playing up (!). I have just reintroduced high strength D in the hopes of improving this, taking high strength C as I started taking it for a cold and I felt better whilst having it, also taking folic acid. If pains continue I will go to the GP for tests, although I think he has already scheduled me in for a thyroid function so I'll probably have the full screen then and, if necessary, supplement with high strength B12 and/or iron.

Sorry that this is so very long! But hope some of it helps.

To the pp who said about all of the overwhelming info - totally understand! I got my Dx about 3 years ago and in hindsight the symptoms had slowly been building for a while. It was only about 6mo ago that I started to feel like I had some understanding of things, and there's still more to learn But I guess that's why we have this group!

*helpful and listens

To clarify, diet needed sorting because he said that the liver is processing everything and until you have a slightly cleaner diet, sometimes the vitamins just get processed through without really having any affect as they're not absorbed properly (which may explain why my previous vits had no effect, but that recent vit C is now a good addition).

mumat39 lol at the Miranda quote!

That's really helpful Delasi. Thanks.

I've been reading about Hashimoto's on the link above to suite 101.com and am finding lots of info that I didn't even know about.

It's very confusing as I have read lots before but some things are still a surprise to me. For example, I have believed in Vit D ever since I was diagnosed as having very low levels and after supplementing with D3 did seem to help. But, on that site, it mentions that sometimes it's better on Hashimoto's to avoid Vit D. That has really surprised me. I feel like one of my core beliefs are being questioned.

So, with all the information 'out there' how do you pick out the actual facts from the theories?

Also, I didn't know tea was bad, both black and green! I stopped drinking coffee about a year ago, thinking tea was better, and have about 5 cups a day. I am so confused.

Also, all the veg I thought to be 'good' for me like spinach, brocolli etc, turn out yo be goitrogens, so should I not be eating them?

Delasi, your doctor sounds great!

mumat I think it isn't so good because it has goitrogenic properties, but I didn't realise the same applied to black tea (read about green tea, luckily, when I thought switching would be better). I don't drink it regularly anymore but not for thyroid reasons, I just really like coffee and now have a coffee machine! Also the veg is largely still good for you As long as it's cooked! Cooking inactivates the goitrogenic properties of those foods. So the only time you really have to think about it is if you have, eg, raw cabbage in a salad, or fresh strawberries (yes, really ). Also 'raw' almonds (as opposed to roasted, almond milk, almond butter, cooked in a meal).

So as frustrating as it can be, sometimes we just have to try and level the field as much as possible and then embark on trial and error. Once I improved my diet and tried to remove any interfering factors (eg goitrogen free where possible, no supplements), I started testing things. Eg, if I cook with a little soy sauce I don't see any major difference in how I feel. However if I have soy milk or a soy dessert, my energy just drains. So I figured that I can handle just a small amount of soy - I wanted to know as I saw people avoiding capsules with the tiniest bit of soya lecithin out of concern it might affect them, and I didn't want to do that!

The other thing to bear in mind is that, usually, we can handle these as one offs - though the only way to know is to embark on trial and error as above. If someone offers me a dessert with fresh strawberries then I gladly eat it (!), but I don't buy strawberries and I wouldn't eat them regularly. Typically the amount I'll get with some cake or Eton mess isn't actually that much. However if someone offered me a soy dessert (not that it's ever happened!) then I would just politely decline as I know I react negatively to soy.

I hadn't heard that about vit. D. I've read why it's good (and also, why it's complicated to get the right level you need) - Chris Kresser is another good source of info (link to a vit D post), alongside Mary Shomon (link to general page). However I also get very little sun and not much D in my diet naturally, so I've long been recommended to supplement. I will report back if I see an improvement in my symptoms over the next few weeks as I stopped supplementing around May/June last year. If I don't then I'll be seeing my GP and considering if I should have higher D and/or iron and/or B12.