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.

Hi all
Well I have had another blood test - TSH now at 4.16 (0.30 - 5.00) and T4 14.1 (8.80 - 18.8). Levo increased from 50 to 75mg and repeat bloods in 6 weeks.

Can I ask a couple of questions though please? I am prescribed Adcal-D3 (calcium carbonate and Vit D3) for a different condition and think I read somewhere that levo and calcium shouldn't be taken together. Does anyone know the reason for that? (if indeed I read that correctly).

Also I have been reading a lot about different types of hypothyroidism but getting myself a bit confused. I had a peroxidase antibody level of >1000.00 (0.00 - 5.61) - am I right in thinking that indicates Hashimoto's thyroiditis??

Thanks

Thanks girls, yes TSH, FSH is stuck in my head as been having ivf, I lost funding due to my FSH going sky high (premature ovarian failure) heard it can be linked to hypo

Will get the range and let you know, I'm clued up on ivf but clueless on thyroid issues

Lauren x

Hi Hattie

You are right that calcium and thyroxine should not be taken together.

www.ncbi.nlm.nih.gov/pmc/articles/PMC2293315/

Have you had your vitamin D tested? If you're hypo, you might be very low in vitamin D, too low to be fixed by the 400iu in Adcal.

Oh, and if you are positive for antibodies and you are (in spades) you have auto-immune thyroiditis aka Hashimoto's Disease. I don't suppose anyone has mentioned this to you, but you should really be looking seriously at a gluten free diet, because those antibodies (and you have lots of them) feed on gluten. Take away the gluten and you starve the antibodies.

Hi all, haven't been on much of late but reading through the advice again. Going to see GP tomorrow and request a blood test, last time I saw him he said we should do one soon so hopefully it shouldn't be an issue. However I'm going to ask about antibodies, I didn't know anything about it until coming on here and I'm wondering about it now - largely from the gluten perspective.

Last year I was doing a diet recommended by my GP, he didn't prescribe a deliberately gluten free diet but it happened to be very low in gluten and some days I was gluten free, I felt great, and I am wondering in hindsight if that was part of the reason why. I was tested for Coeliacs last November but it came back negative so I just sort of pushed it out of my mind. However, as mentioned in earlier posts, my body really isn't 'right'. And it just seems to be getting worse. The tiredness isn't even the main issue now, it's the muscle and joint pains that are taking over and making everything, including sleep, difficult. I'm young, so I feel like this isn't just a part of life. I have a healthy diet, I try to keep active day to day by walking a lot, and I do at least 1hr of exercise each week (it doesn't sound like a lot, but I'm sure many of you know how it is to build up to activity, strength etc). From my fingers up to my shoulders are the worst affected areas, but I get aches and pains elsewhere, inc. headaches, back pain and leg ache.

Do any of you have advice or experience in terms of how gluten free you've gone? What I mean is, I have some experience of going gluten free (I lived approx. 1 year gluten and dairy free, a few years back, due to a separate health problem that is now resolved). But I remember the extent to which I read packaging, buying specific stock cubes, gravies, checking spices... my diet as it stands isn't overtly dependent on typical gluten sources, such as bread or pasta, I eat pasta maybe once a week and bread maybe 2 or 3 times a week (2 slices). I feel I could easily cut out or replace these. But I'm thinking about the other things that might have gluten in - stock is important, for cooking, and oats are important to me, I understand that oats are usually find but sometimes there is cross contamination? Is that something to be concerned about if going gluten free for thyroid (ie not for Coeliacs) or from experience do you think that I might be alright with oats? Or alternatively, how do you find non-contaminated oats?

Spices. I also need spices! I figure they're just, um, spices right?!

Last but not least, cornflour. For thickening things. This should be ok, I think...

*usually fine

delasi I usually get gluten free oats as ordinary oats does upset me , for what its worth you probably know as much as me since you did it for a year, I was really strict for two weeks to see if it worked , it did! (duh) no more "IBS" so now I have gluten free pasta bread but if I'm out I am not so strict as it can be difficult at times I think I can tolerate a little, but not the afternoon tea I had this week end (!) Unfortunately it does nothing for the exhaustion but I hope I absorb more vitamins now things have settled.

Hm, yes, will have to trial this again and properly. I think I will be not too strict when out also - in reality we don't eat that much food out, but I might have a bit of cake once a month, so I'd like to see if I can 'get away' with that. If not, I can live without cake, I'm not that big a fan! We get takeaway sometimes so I'll opt for things I can have relatively free (eg kebab and salad) rather than the likes of pizza. We're fortunate enough to have a fair few options available to us, like pho, so it shouldn't be as boring/difficult as it was a few years back where I was limited to health food shops and one cafe! Although that was partly because of the dairy too, now that did make quite a difference to the experience.

Off to compile my research in advance of an appointment tomorrow.

Well, my mind is now overrun with working out if I should buy new stock cubes... I think I may have gone too far

I've decided to go gluten free with what I have - when I did my GP diet last year, it wasn't strictly gluten free so I'll take that as my starting point. So if I have non-gluten free stock in the house, I'll continue with that until it runs out (it's not like we even use it that often anyway!). I'm going to finish with my current regular oats that I have before buying specifically gluten-free ones. The biggest changes will be cutting out regular bread, pasta and 'oven food', ie when we're lazy we might throw in a frozen pizza or breaded chicken, so I'm going to make sure we have a few GF alternatives instead. We'll see how that goes, I think I will feel better, but if necessary then as I run out of the few non-GF bits I'll replace it with GF and see if there's a further improvement.

After having casually mentioned current pains to DH and DF, both have given me this face and it would seem that my thinking I had a minor gland issue may not be correct - as I have incorrectly identified something else as glands So I'll raise that with the GP tomorrow too.

Does anyone else get this?

Always had a bit of a weak bladder but now discovered (don't think I am pregnant but thought I was) that I seem to pee a lot and sometimes not in time for me to reach toilet!

Looked online and saw this can be side effect of thyroid meds.

should I ring GP? I really do not want this side effect.

Hello If it's getting worse then definitely see your GP. I don't know in what way the thyroid meds affect in order to cause this, but there are very good pelvic floor exercises that can help a lot. Not just the ones you read online, you can see a specialist on referral and they can help a lot.

Saw the GP yesterday, can breathe a huge sigh of relief as he's proved himself again to be a great doctor. DH thinks he's a wasted talent at our surgery! I'm just glad he's there! He's seen me a few times now for musculoskeletal problems, so of course first one seemed an accident, second perhaps a coincidence, third... well, that's getting suspicious. I explained how I've been feeling and he immediately said, "Well, you're hypothyroidism is an autoimmune problem, so you're at a much greater predisposition to other autoimmune issues..." and started to list areas I could be affected in. I wanted to cheer He's ordered a full screen of, well, I'm not sure, everything basically. Any syndrome or illness he could screen has been ticked (he mentioned RA, Sjogren's, and a bunch of others, as well as deficiencies) and I have an appointment with the nurse early next week. He said we'll review the results to see if anything flags up, and then go from there to review medication, possible physiotherapy etc. Not a moment too soon, as the pain in my arms especially has been worsening and today it's radiating from finger tips to my shoulders So it's bittersweet at the moment. I'm glad I'm being reviewed in this way, but obviously I would prefer I didn't need it in the first place!

Hello I mean, I have experience of it as does DM, but it pre-dates my meds and DM isn't on meds. Mine has worsened (but it's barely noticeable, I think at least in part due to exercises), but I can't categorically pin that down to meds as I have a 14mo and it worsened in pg so... too many possibilities

delasi I'll do what you say thanks

What's v interesting for me is when you said they'd screen you for other stuff eg RA. As my mum has RA and has had it past 15 years. Managed well mind you.

My grandad (her father) had hypothyroidism so genetically must be from him too - ta grandad.

Some days the weeing I can cope with.

Hi RockinD thankyou very much for that article link and advice - I am now taking the Adcal in the evening.

I've not had my vit D levels tested actually. The reason I was prescribed it was when I was diagnosed recently with ulcerative colitis I was on high dose IV steroids (currently on oral reducing dose) and the Adcal was prescribed for bone protection. It would definately be interesting to know what my levels are though - I'll ask my GP next time I see him.

You are right that nobody has mentioned a gluten free diet to me. Would the antibodies not be reducing along with my TSH? I can't get my brain around the anti-bodies side of things no matter how much reading I do.

I can see I have a lot more reading to do, staring with gluten free diet information!
Thanks Rockin :)

delasi - glad to hear you also have a suportive GP. Let us know what results you get and in the meantime I hope you can get your pain under control.

Hattie I'm with you there, still trying to grasp the antibody side of things. Despite being diagnosed 3yr ago it was only in the last few months on this thread that I learned that my hypothyroidism was an autoimmune problem and that antibodies are even involved - I figured it was just some sort of malfunction in the thyroid and that was it.

Pain has been up and down. It's there at all times, sometimes worse and sometimes better. Been very tired with it too though and can't extend my arm or raise it, and picking stuff up isn't easy. I have a 14mo so it gets a bit tricky at times! Painkillers don't seem to be making any difference. But today my fingers are much better which is good, as I can type better and get some emails done. Fortunately DP is a SAHP so I have help on-hand. Unfortunately I don't get any type of sick pay (long story) so hoping to fix this soon! Should get test results by the end of this week, I think.

Can't remember if I've said before but Holland & Barrett do good vits & supplements, usually on offer in their sales. Also Healthspan are good and the prices are very good.

Hi

Not sure if I've posted before. Diagnosed last year have been on 50mg Levothyroxine for 1 month.

I've noted that I seem to be very fuzzy and also prone to more headaches and am eating like a pig (more so than usual). Also urinating more.

I am using fluoride free toothpaste and taking tablets first thing and eating 30 mins to half an hour after taking tablets.

Is this usual? do my symptoms go away?

Also is it worth joining Thyroid UK or not?

HelloBoys have you had your levels rechecked yet? It might be the doseage isn't quite right yet. Sorry, I'm new to all this too.

Has anyone had any luck convincing their GP to alter their meds? I've been on 25micrograms levoxy since October and I still feel dizzy/fuzzy and knackered. My periods have come back but as I'm TTC I want to make sure my dose is right. My last blood test came back as TSH 4.03 which I've read needs to be more like 0.5-2 to aid conception. They said my test results are "normal".

Barbies 25mcg is a very low dose - I was started on 50mcg when diagnosed. Now on 75mcg which is still quite low compared to many but being tested today due to presenting symptoms. Where I live, 0.3-3.0 is the normal range, which is what I've read online as being optimal too. When I was pg I saw an endo and an obstetrician who said that I had best be under 2.0 (fortunately I already was and stayed that way when pg). I'm not a medical professional, but personally I would be wanting a different doctor or for the current doc to accept under 2.0 as the target. A friend of mine had really poor thyroid support when ttc which made everything harder, but as soon as she got a different doctor who was attentive to that she got pg quite quickly, had a very healthy pg and straightforward birth and now has a beautiful baby girl!

Barbies - no, the doctor told me to wait to April to get levels tested!

I actually feel the same if not worse (tired, fuzzy etc) and considering Armour or something else.

I wanted to Levothyroxine to make me feel better not worse.

and to anyone who takes it too late in the day like me at weekends (10 and 11am compared to 7.30 weekdays) do not do that! I swear that is what woke me in early hours of Monday morning!

I am tentatively TTC (newish relationship so not best start) and had thought I was pregnant but now seems not (despite 1 positive result).

Hoping to get more information from you all.

I had DD2 6 months ago. I have been feeling dizzy and unbalanced for about 6-8 weeks and two lots of bloods to test my thyroid have come back to tell me (and I can't remember the exact words) that my thyroid levels are fine but there is an issue with the thing that regulates these levels.

I have received a letter from the Endocrine department inviting me for an appointment.

I'm interested in hearing if anyone can help ne with what they will want to discuss, and also, did/does anyone suffer from extreme dizziness?

Oh here's another thing. Before I was diagnosed I could quite easily eat without snacking - so had breakfast, lunch and dinner.

I did used to have bars like Nature Valley, Baby Bels etc at snack times but this was partly (a bit off?) because I have or did have PMT!

Now (maybe habit again) I seem to be eating more (like packet of Rich Tea but spread over a week or 2 at work) yet I feel sick first thing. I can't not really have tea with milk just after my thyroid meds but will try taking them at night (would this then wake me up?) or drinking green tea first thing (bleurgh).

I am good about not eating breakfast for 30 mins to 1 hour after the tabs tho. Feel like a wrung out dish rag very tired can't tell people at work.

delasi thanks very much for that. I had read the same so will tackle a different dr on Friday about it. My GP friend also said she has never started anyone on a dose as low as mine.

HelloBoys are you sure you aren't pregnant? The sickness and eating stuff ....

Snuffle yes I feel very dizzy too. You need to get onto your endocrinologist to sort that out with a little one about.

delasi - I think I will test again. I had thought I'd had chemical pregnancy etc but I now have a cold too.

The thing is I don't feel like vomiting sickness just queasy at odd times. Diarrohea last night which wasn't pleasant... and I am knackered beyond belief. all those things could be down to a cold or virus.

Mine was weird because I felt pregnant (have been before but MC, termination etc) but my boobs are HUGE and not hurting but not comfy. did test it came out positive then I went to GP and she did a test and I'd done another one and it came out negative.

I had also been using withdrawal method he did come inside me but had a period or what I thought was one....

Like I said before I'd be happy if pregnant and would get down GP asap but not TTC!

Called up for test results yesterday, seems like there's nothing remarkable so that's good on one hand, but means more investigation has to be done. Seeing GP next week to discuss treatment, further investigations/possible referrals, etc. Bit of an improvement which is good, but that's an improvement on the last fortnight, not how I was prior! My hands and arms are unreliable, sometimes they're okay, sometimes I can't move one much or my fingers get very stiff, so it's just... kind of manageable at the moment. Real test is this week as I go back to work

hmmm that's a bit frustrating delasi. How is your GP? I saw a different one last week and have persuaded them to up my dose (still small at 50mg). i feel much better already.