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.

mumat39 thanks for your thoughtful post, that's reassured me as I didn't even know about nhs choices. This is so helpful and am actually very hopeful about my appointment now!

Lovepancakes thanks for your useful post.

mumat29 you have to excuse us being slow off the bat, especially this time of year! I really wind down over school holidays, especially the cold ones.

I've also replaced my sitting-with-laptop on MN sessions with a 2 mile walk 3-4 times a week, as I am hoping that will help ward off fatigue and give me a bit more energy. (I've noticed it does seem to help to take my iron before a walk, but a GP would probably say it's impossible.)

I think there is so much around that 'they' say about things like tea and coffee, it is something you just have to try out and see what works for yourself. Personally I find coffee really helps.

I've had a similar experience with soya, and am also careful with it. I have in the last year started to use goats milk (and cheese) and that is rather good. I like it in coffee now.

Talking about 'other medical conditions' my parents have alzheimer's and so I am conscious of what is good and bad for that and try to maintain a lifestyle that will help combat it.

Delasi, you sound like you're very in tune with your body.

I seem to definitely lack that sort of awareness. That coupled with a complete lack of will power and no 'off' switch to tell me when to stop eating and I sometimes feel doomed.

We already have lots of wheat free foods in the house as my Dd has many allergies to lots of everyday foods although she seems ok with gluten. The trouble is the food is so so expensive. A small loaf of bread that I have to order costs £3.09 so to feed both DC and myself makes it very expensive. I have tried, and failed at making WF/GF bread.

I had a counselling session yesterday and I came to the realisation that I am 'stuck', like I am in trying to walk through really treacly muddy gloop and if takes all my energy to make a small step, but the gloop always wins out and I end up back where I started.

I have read loads of things and know I should stop eating gluten but despite know what it will do to me, I still carry on. I think it is a form of self harming, but I wish I could get over it and just stop.

It's almost like an addiction. I remember posting on one of the weightloss forums and being asked did I actually really want to lose weight, and I do, but am just utterly crap at it. I have actually given up trying to lose weight an now feel I should focus just on my health and try and get that right. I am 3.5 stone overweight, and have averaged a gain of about 10lbs a year and am at my heaviest weight ever. I am heavier now than I was when I was 2weeks overdue in my first pregnancy.

I'm waffling now. Sorry.

Xxx

Yegods, no worries about not replying. I am just so so grateful to have found this thread, so thank you for starting it.

I need to do what you've done and stop MN'ing all the time. You are doing really well to walk 2 miles a day. I had spd in both pregnancies and can't walk too far anymore. It used to be something I loved to do and I'd sort of accepted it as a done deal. But I feel inspired that you've managed to work though the issues you were having. I also find it makes me really tired too.

If also have a problem with being a night owl, but on Chris Kressers website, it talks about this affecting Hashimoto's people in that they can't sleep at night but can't wake up in the morning. I wonder sometimes if I have adrenal fatigue/issues. Do you know much about that?

You asked earlier about my iron levels. I was put onto fearsaday iron tablets about a month ago. I was 1 point higher than the lower level of the Normal range, but also had a low blood count so the gp decided to supplement. I've read since that fearsaday can affect levothyroxine, so it's all very confusing. The iron tablets also cause stomach upsets but I think I maybe getting used to them now as that side of it seems to be slowly improving.

I asked the GP if they would test me for my T3 levels as i read somewhere that with synthetic thyroxine supplements, not everyone can convert T4 into T3. He said the labs won't test for this unless there is a real problem with the TSH levels not improving after taking levothyroxine. I also read that it is possible to take natural thyroxine, which I believe comes from pigs. I haven't even asked the ho about that, as I'm sure he'd just poopoo it.

I'm sorry to hear that your parents are affected by Alzheimer's but I hope that you are all coping ok with that. I don't know too much about the condition, but it know it is a cruel illness.

It's sunny here today, so far, so I hope it is where you are and that you enjoy your walk today.

Xxx

mumat It's only something that has come slowly with time due to having various health problems (beyond the thyroid issues and spanning back to when I was about 10yo!). However it does get easier to spot differences and problems in your body, just taking a mental note of when difficulties happen (eg bad tummy, headaches, muscle aches) and when they don't. I'm still at a loss to explain some things, but it's much easier now than when I was first diagnosed.

How much bread do you have in a day? Or other wheat based things? Tbh I had to shift my way of eating quite a bit over the years but in doing so I have found out what works for me and I'm happy with it. Sometimes a little willpower/restriction is needed but it becomes second nature with time. As upthread, oats are more my staple for breakfast than wheat-based cereal, once I started doing that regularly it became quite easy to continue. I eat a 'proper' meal for lunch, typically rice with veg, maybe some leftover meat, poultry or cheap prawns - if I have a sandwich, I feel hungry and rubbish too because it bloats me. I try to snack on fruit but my 'treat' is plain biscuits - sounds boring, but I like dipping them in tea or coffee and I don't binge on them like I do with chocolate/choc biscuits. I became accustomed to dark chocolate - I like it, but can't stuff myself with it like with milk choc, as it's too rich for that, so I have a natural limit. I almost never buy chocolate as I know I'll demolish it, so when I do it has to be very good quality darker chocolate, and not a huge bar. I have dark chocolate spread for TOM (sorry if tmi!) as I get mega cravings, but again the richness means I don't have that much, I usually spread it on rice cakes as I like the crunch Dinner has to be sensible for the time - I often eat late at night due to commitments, in which case it has to be a small portion, and no wheat as I wake up very uncomfortable (case in point: made pasta the other day for dinner, woke up very bloated, gassy, tummy ache ). Rice is a fantastic gluten-free food and large bags can be bought cheaply and last ages - we get about 10kg for around £10 which lasts us for about 3 months. I eat bread a few times a week, probably about 3 or 4 mornings a week I have 2 slices, sometimes I have less. I don't eat it at other times.

I don't have a lot of willpower, which is why I effectively have to ban certain foods from the house. If I 'treat' myself too much, eg start buying chocolate, chips etc, then I just sort of lose it and eat way too much and lots of junk. Sometimes it's more psychological, if as a one off I wanted to have cake, and a slice costs £1.50 but a small cake costs £2, my instinct is to buy the whole cake but then I'll eat the whole cake! So I have to go against instinct and just buy the slice. The same for those bags of big cookies, I only want 1 or 2, but they come as a 5. So I buy them and just have to give away or throw out the other 3 asap.

If you haven't already, you can find lists online of naturally gluten free foods, these are much better than buying specialist free from products which can be silly prices. Soba noodles are wheat free (check packaging, some companies mix it with regular wheat), you can get them quite cheaply, they're tasty, easy to cook. All root veg is a great source of gluten free carbs.

If your thyroid isn't being managed properly then that will also have an effect on weight gain and loss and even when 'normal' the basal rate metabolism is likely to be much slower than an average person's (see Mary Shomon on how to work out how many calories a hypothyroid person needs compared with an average healthy person).

The other thing to suggest - something I'm doing at the moment, I'm 2 stone heavier than I want to be baby weight has barely budged and thyroid has been up and down since I gave birth (1y ago) - is to try and improve how you feel, by making yourself do little things to boost your self esteem/confidence. Eg, I bought some new clothes in the sale that fit me as I am now, that are nice clothes not just baggy ones, I make sure every day I do a little skin treatment (wash face, use toner, some moisturiser, eye cream), treat my hair a bit better instead of just tied up, at least some basic make up like a bit of foundation or eye liner... all of these things help me to feel a bit better about myself, which in turn helps me to have more determination to not binge or eat bad food, which in turn makes me feel better physically, and so the cycle goes on. Hope you can find something that works for you

Lovepancakes, good luck at your appt. I hope your GP able to help you.

Xxx

Im rhe same with the bad foods I love, can't have them in the house. I have rice cakes, crisp breads and oat cakes, and fish ir liver pate or avovado or cream cheese to spread on them.

For me, the exercise is a matter of self medication. I need to get out of the house, walk around my local area, get some exercise and fresh air or I get depressed and feel the fatigue and aches and pains all the more. It's taken a long time and a lot of self denial to get this far, but there seems to be a hope for a pain free, enjoyable life. The walks are a form of reward as well.

Oh, I make breakfast bars too...dried apricots, dates, dried figs and chopped brazil and hazelnuts put into melted dark chocolate, with a little coconut oil, cinnamon, sometimes some chili powder. Line a baking tray with cling film, pour it in and wrap the film over to flatten tge block. Harden in the fridge and then cut into bars.

yegods Thank you for sharing about your walking, especially as a replacement for MNing and to help the body get going and as a reward too. About 5 months ago I bought an at home exercise thing that was just the kind of thing that I had been looking for for ages. It was just after GP had advised me to get back into exercise beyond walking (I also started off by pushing myself to walk more, and still am increasing it bit by bit). I used to be very active and fit, but that's a few years ago now, and GP (in a nice way ) said, "You're in your 20s! Walking is great for my older people, you can do some proper fitness!". However I never got round to it Got overwhelmed by going back to work, stressed, tired, then ill and so on. So! This evening I decided to follow your lead and push myself to be active and hopefully make myself feel better for it. I did an hour of exercise this evening and I feel really good There were times that I know I looked awkward, like when children try to dance, but it doesn't matter

I then showered, did a bit of pampering (ie shave legs, deep condition hair, use body oil, not just a quick wash and go!), and then decided I should finally file my nails instead of just cutting them off (another thing I no longer take care of). All in all today wasn't initially good - slept for hours in the middle of the day, felt awful - but has ended on a high note.

yegods PS your breakfast bars sounds delicious, mine are really plain! Going to have to implement some of your ideas!

While I had most weight to lose I didn't really have clothes to fit for winter walking/running and I didnt want to buy new. I used a wii fit and well ran around the house, and with stretches and the other activities I did get reasonably fit. It took up a lot of time though, and it's solitary.

My current batch of breakfast bars have dates, pumpkin seeds, brazil nuts and some ends of packets of things. I think I'll try adding crumbled rice cakes next time to make them lighter (and cheaper) as they are pretty solid.

yegods Solitary is good. I have never been particularly fond of group exercise or training with a partner. Well despite my high note last night, woke up in the middle of the night with awful stomach pain Still feeling really off, so even more glad that I pushed myself last night before that!

Thanks for the ideas, I have some seed mixes to use up and plenty of rice cakes, once my last few bars run out I'll start experimenting

Hi all. Sorry for not coming back sooner - delasi thankyou so much for that information regarding benefits. I am in the lucky position of (so far) not being in a position to need to claim so my knowledge is zero. I really appreciate your help in explaining that for me :)

I'm on the phone so can't really see posts so will come back and post properly tomorrow but welcome to those who have joined this great thread recently.

I'm tentatively going to post.

I have had epilepsy for 10 years. I'm 32.

I had my DS3 in Jan 2011. By the August that year, I was getting tireder and tireder. Put it down to new baby plus 3 older DC 's with additional needs.

By April 2012, I started getting arthritic pains all over my body. Finally got blood tests done for RA in September 2012, but they came back negative. Got given Naproxen and told to take OTC cocodamol when pain bad.

GP did a blood test in November 2012, mostly for cholesterol I was told, 'and a couple of other things'. Got told my cholesterol was 6.2 (!) despite the fact that I eat very healthily, and at that point was very active, despite my joint pains. The 'something else' wasn't mentioned by the practice nurse that was advising me on ways to lower my cholesterol. (She has since been struck off by some nursing council for unprofessional ism and not dealing with test results properly?)

That Winter, I was extremely susceptible to the cold - under a duvet with two sets of fleecy pj's on, heat pads all over me etc. just figured it was a cold winter.

Gradually over 2013, noticed more and more 'oddities'.

In the April, I had cancerous cells on my cervix (not precancerous, the actual horrid sort...). Had LLETZ, have now got the all clear.

As the year progressed, I was able to do less and less, to the point where I didn't do anything social as I had no energy, gave up many of my hobbies, even the school run was a challenge.

Found the heat of the summer difficult, yet never got sweaty. Which was, erm, odd. Figured my new deodorant must be REALLY good!

By September, I was permanently run down, sleeping more, in constant pain (to the point where even standing up HURT). Kept going, plodding, all I did bar the school run and LESS than the barest minimum of housework was take the DC's to their medical appts and go food shopping.

Insanely I started a College course 2 evenings a week, but I would be so drained that I'd spend almost the whole of the next day in bed.

Then my periods started coming every 2 weeks - so I would have one week on, one week off. So I mentioned it to GP, had another smear due to previous LLETZ. Smear totally clear.

Gradually I stopped being able to manage housework.

Noticed my tongue looked weird in the mirror in about October. Shrugged it off.

By November I was so ill my Ex started staying on the sofa most nights to do the night feed for DS3 (almost 3 but the night feed a medical necessity), helping with cooking, helping with housework. Ex starts moaning that while I've always lost quite a bit of hair, it's getting fucking ridiculous because he was having to CUT my hair off the beater bar of the Dyson after doing every room. If you've ever looked at the bristles on a Dyson, the hair would be wound round right to the top of them!

By mid December I was basically bed bound except for school runs, and in constant pain day and night. Often (like now ) too much pain to sleep. Despite being VERY tired.

Still having fortnightly periods.

Gets to earlier this week. Absolutely bed bound, having to sleep fir 2 hours after every (what should be a 10 min each way walk but taking me faaaar longer), can hardly type on a touch screen (Siri good for when you can't type if you don't mind an astonishing lack of punctuation and an inability to understand my Estuary accent).

I come on A-Bloody-gain. So I google causes of frequent periods. The first thing that popped up was hypothyroidism. Looked at the list of symptoms and thought 'bloody hell'.

Read that TSH should be tested. Rang a bell that back in Nov 2012 when I had my cholesterol tested, they possibly tested something called TSH. So I rang my GP and requested the results of that. Apparently my TSH was at 4.5 in November 2012, and the Nurse was meant to discuss that with me. The same nurse that is no longer able to practice as a nurse for varied reasons. And she didn't.

I now have to see the GP on Wednesday next week and pick up new blood forms. Then go for the blood test on Thursday morning.

Also, on closer inspection, the bottom of my neck is swollen, and I've also realised that I last plucked my eyebrows about 3 months ago...and they don't look like fighting caterpillars yet. Which is unusual. And they don't go all the way to the 'end' IYSWIM.

I've read that a TSH of 4.5 is considered the top of the 'normal' range...but that was taken in November 2012 and I've gotten a lot sicker since then. My ex says that I am "a shadow of who I used to be".

I am going to hazard a guess and say that I'm pretty sure I have hypothyroidism.

(Btw my Mum was dxd with Sjörgens about 8 years ago, which I have read is connected)

I had the burning sensation for about 6 weeks last winter. I e had peripheral neuropathy since then - but assumed that was a side effect of the GABAPENTIN I take for my epilepsy.

That bursitis thing - I looked it up. I've had that for the last 3 weeks, or something very painfully similar. Impossible to lie on my right side due to the hip/ top of leg burny ouchy pain, can't lie on the other side as I've torn my left rotator cuff muscle during a seizure.

When I say I get cold, btw, I actually just 'shut down' if I'm too cold - like, almost in a coma shut down. I am non responsive even when people shake me, apparently, until I warm up. Been like this for a full year now. The DC's throw blankets over me and put the heating on, and snuggle me to warm me up! I feel like shit on a stick death warmed up when I come round, and I gave a BANGING headache that nothing cures.

Couthy, please ask for a call back from your doctor about this and get your bloods taken urgently. It is the way you shut down to the point of being nearly in a coma which is alarming. You have probably read by now that extreme hypothyroidism can lead to coma, and it sounds as if you need to begin treatment as soon as possible - as soon as they can get those bloods turned around. Is it possible for you to get yourself to the blood testing clinic at your nearest hospital? That is what I do now, much quicker to have the doctor print off the request form for the relevant tests, I pick it up and take it in the next morning to the walk in clinic. The nurses there are taking bloods all day and so they are better at finding my poor veins too.

Also, that much blood loss due to so many periods is likely to cause anaemia, have some iron to take soon after they take your blood. Sit in the hospital cafe, have a warm drink and take a multivitamin, and an iron tablet.

Check that your doctor asks for tests for iron, vitamin D and full TSH, T3, T4 etc. too and books you in to investigate for thyroid cancer, or whatever is causing the enlargement in your throat.

I've been taking spat one when having these multiple periods because I thought the exhaustion might be to do with anaemia.

No way to get the bloods done sooner. Much history with my rubbish GP. He won't give me the firms until my appointment on Wednesday and I can't get them done till Thursday morning due to needing Childcare for my DS3 - both my GP surgery and the Hospital where the bloods will have to be done are 2 buses away, right over the other side of town, and I have to pick DS3 up from preschool at 11.45 on a Wednesday. I'll only just make it from the GP's appointment.

My GP is awful, but none closer that I can currently physically get to have spaces - the only one with space has no public transport and would literally kill me to walk to right now. Easier to get the buses as I can sit down.

Spat one = spatone

OK, I'll stop telling you what you already know! I'm cross on your behalf though, they have let you down and it is not good enough.

Just wondering if you're anywhere near me, if you are I'm happy to help with transport.

If your tests show you have anemia, you should get iron prescribed and you can request liquid iron which is easier to swallow than the tablets.

Just wondering what they usually test for , and whether I should push for thyroid antibodies tests, what I should actually ask fir them to test.

I know TSH and FT4, and attempt to get FT3 tested - but what else? I'd like to have a list I can insist on!!

If you want thyroid antibody testing, yes you'd have to push for it, and the doctors usually like to get an indication of hypothyroidism with the TSH test first, and then you'd need to push for it (I needed to know the reason I was hypothyroid, and also why I was anaemic).

Others here might know better than me, or have better knowledge of the processes involved. (Please do correct me if I'm wrong!)

For this 'first' raft of tests, you'll probably get things relating to tiredness: iron, vitamin D, magnesium, TSH, glucose/diabetes (you fast for 24 hours before for that) full blood count (checks liver) and so on. If TSH is abnormal, that's the time to ask for further investigation into what is causing it. Perhaps you should get a referral to a specialist (could you get to appointments?) Mention the enlargement of your throat and previous cancer, and ask what it could be causing it - ask for the thyroid antibodies test then, yes.

Couthy Wow, I really hope that you get proper treatment asap, and go for it on the insistence, everything you can do to get what you need. I would also suggest referral to a specialist - everywhere is different and rubbish GPs can be a massive hindrance to getting passed on to a consultant, but again whatever it takes to get you to an endocrinologist. You sound hypo, and being so you sound like you're at quite a critical state, so I don't think a GP should be managing this alone. Lots of for you.