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.

I have conceived six times, all of them while on thyroxine. All it does is replace the hormone that your body should be making itself.

Hi Ruby. Thanks for reading my rather woe is me post.

I was tested a couple of years ago for coeliac and it came back negative.

I am back to the Drs again this week. I am dreading it. He was so rude and dismissive and said he would have to have a meeting about me and all of my inconclusive symptoms. He made me feel like a pain in the bum and I am actually worried sick about going back, more so because of his attitude than what they may say.

I just want an answer to all my symptoms tbh. Reading this thread seems to certainly fill a few gaps for me even though I am only borderline hyper.

Thanks ThreeLannistersOneTargaryen I'm currently at the tail end of a 2WW. I did a test on day 24 which was negative but it's day 33 now. No symptoms but wondering if I should test again. I started taking the thyroxine midcycle but if I'm not pregnant this time will wait until levels are sorted.

I too suffer from underactive thyroid and it is so hard. I started the juice plus shakes and I honestly feel so much better I actually have energy and iv finally lost weight 17 pound in 5 weeks. Iv tried every diet before . My hair no longer falling out n iv got nails lol xx

Well I am pregnant !

I'm increasing my dose by 30% which everywhere seams to recommend as soon as you know.
I'll go get a blood test today and get into GP as soon as I can.
I'm obviously excited but nervous as have read loads of scary thing about under active thyroid and pregnancy/birth

Congratulations hazchem!
Hopefully they'll keep a close eye on your levels.

wanted to add my congrats too hazchem my neice is underactive too and has 5 month old baby girl both did fine they increased her thyroxine too during pregnancy and had no problems to do with underactive thyroid , so not all scary stories.

Thanks:) It's lovely. I've already started to chatting to it. Although not out loud yet :)

On other notes has anyone developed eczema while on thyroxine ? What about pimples?

Hi I Had thyroid ultrasound scan this morning, and don't feel any further on towards working out what is wrong with me. it all started going wrong 4 years ago 3 months after I gave up I smoking, weight gain of 3 stone in about 6 weeks. got particularly awful last year, hair coming out, awful nails, dry skin on top of the general aches and pains and tiredness. Oh and brain fog. Etc etc. Mild Carpal Tunnel and Tennis Elbow have been diagnosed by GP, both of which can be linked to hypothyroid. heavy menstrual bleeding also investigated, put down to polyp which disappeared on its own as not present at the hysteroscopy. My mother says I have a puffy face, and I struggle to get my wedding ring on most of the time. started getting digestive issues last summer coeliac testing got me nowhere, but decided to go gluten free anyway in October, and hey presto I felt tonnes better and the aches and pains went and lost a stone in 2 months without giving up anything (crisps and chocolate) other than gluten. I haven't lost any weight this year, and actually seem to be going back into decline recently. I have put three pounds on this week. pretty active lifestyle.

scan this morning revealed a single nodule on LHS side, sonogropher was very laid back about it, and seeing that 95% of them are benign I can see why. Nothing that might be indicative of Hashimotos which is what I rather hoped would be spotted. the last thyroid tests I have were free t4 10.2 and TSH 1.04 so both in range albeit at the lower ends.

any suggestions on what to do next? I am wondering if it could be secondary hypothyroidism, I am convinced I am not imagining all of this. I thought visit GP, get new thyroid function test done, plus the thyroid antibodies (he claimed they weren't necessary at a previous visit) and possibly tests on cholesterol and pituitary function. maybe referral on to an endocrinologist? Advice on what to say or ask for from those who have been there and done it is very welcome.

Huge tie up between hypothyroidism and stopping smoking. List of symptoms as long as your arm. Better for going gluten free. 'Normal' TSH and low FT4.

Get on the Thyroid UK website and do your research. Then ask GP for full thyroid screen: TSH, FT4, FT3, TPO and TgAB, together with vitamin D, vitamin B12, folate and ferritin.

I'd put my money on Hashimoto's Disease (qv)

Have posted before I have Graves' disease and was suffering from hyperthyrodism after I had my dd.

I am still having diaherra/loose stool even though my Ts levels have been fine for a while and I know TMI but it smells really sweet and my wee has gone green. Have been to gp and waiting for a refer all to endogas (can't remember the rest of the word) department.

I have been tested for coeliacs and it came back negative.

Has anyone else had this/know what it could be?

That's interesting about the stopping smoking / hypo tie in RockinD. Since I stopped smoking I have been diagnosed with hypothyroid and ulcerative colitis.
I stopped to be more healthy but it's gone the other way!

Hazchem congratulations! Brilliant news!

Had a pretty good appointment with my GP. My levels have halved. I'm sitting only just about 2. So seeing I've only been taking thyroxine for a matter of weeks this is excellent. My BMI is still a concern particularly as it will affect where I can labour. However GP is happy to support me in maintaining/minimal gain during pregnancy. So if I can keep my BMI as it is I will be able to birth where I like.

hattie23 I found out the smoking can mask symptoms. Mine was related to periodontal disease. Basically the smoking was making my gums look healthy when they were quite sick. I don't know about it masking for other things but it is possible.

Would like to update. Nodule will be rescanned in 3 months, GP actually agreed to thyroid Antibody blood test after saying it wasn't necessary last time. However, he refused a further ferritin test ("these things cost money you know"). Reason for asking, was 12 last July, rose to 16 in October, following supplementation was 32 in February. then after that gave me blood test form for diabetes (I am not diabetic) and some other things I can't remember. TSH now 1.64 and T4 11, all others "satisfactory" I will pick up printed results after Easter. thyroid antibody test not back yet. Oh and he told me I have been reading too much rubbish about Thyroid on the internet. In the end I stood up and wished him good afternoon before walking out. time for a new GP I think.

Just a quick message to snuffle, not wanting to scare you but it looks like they are looking to rule out Sheehans Syndrome If you google it you'll see it's its rare and complicated but it does happen. I have had it for 7 years. It's a pituitary problem caused by childbirth PPH. Did you have a big bleed? Make sure you see the endocrinologist asap.
Good luck.

Hi l4k - quick wave to another pituitary patient! I didn't have the PPH, but my pit apparently haemorrhaged after giving birth to dc3. Are you ok now? Have to say, treatment and understanding in the medical profession seems to be a bit patchy but 4 years on I am finally normal (and normal weight) again.

hello catslave, I'm fairly ok thanks. I don't think I will ever be "my old self" but this new normal is alright.
I still struggle with low immune system ( have had 6 infections,ear throat sinus, repeat, since christmas) and have had to do hard core low carb to keep my weight down. I'm just trying paleo actually, to try and be healthier and i know my carbs are higher and I've put on weight but I'm sick of being ill all the time.
Out of interest, what is your diagnosis then? I take it you're hypopituitary so do you replace cortisone, thyroid, growth hormone etc?
The care I've recieved has been hit and miss, from fantastic to bloody ignorant!
It's nice to meet someone else with a dodgy pituitary

Hi everyone, ive recently been to the doctors with a few symptoms, he thinks it might be due to an underactive thyroid, ive had a blood test and should get the results on Tuesday or Wednesday.

Until he mentioned it I had no idea what the thyroid does but reading through the symptoms of an underactive thyroid I tick a lot of the boxes.

Hi all! I've posted on here before. I am 58, have had treatment (chemo) for cancer, am hypothyroid, but on medication. Over Easter I've had a number of people staying, up till yesterday, and I now feel completely wiped out, with not much energy, and just want to rest.
Is this unreasonable?

I'm pregnant with DC.2 but developed hypothyroidism after having DS. Interestingly I had a PPH with him and also struggled to feed. I've also got a prolactinoma.

I've had one mc since but am now 25 weeks pregnant. They've upped my thyroxine levels and keeping an eye on me.

helza that doesn't sound at all unreasonable. You've run around after everybody else and now it's time for some 'me' time. be kind to yourself for a week or so - bed by 10.00, stay there until 9.00, that sort of thing, and you should get back on track fairly quickly.

I find that generally I am well, but I still have to be wary of crashing.

Thanks for your support, RockinD. I've been thinking about things this evening. I can't mention the tiredness to those around me, because they'd all have equally valid reasons for feeling tired, but it doesn't lessen the fatigue that sweeps over me at times. I just have to discreetly get more rest, and as you say, wait to get back on track.

Hi l4k - sorry, forgot to set up an alert for replies! How much hydrocortisone are you taking? My immune system gets low if I don't take enough - was one of the major signs I actually had something wrong before I was diagnosed.

They have no idea what caused my pituitary to fail. Apparently it swells when you are pg to make all the extra hormones for the baby, then shrinks back down after the birth. I had massive headaches for 3 days after dc3 was born, which was probably it bleeding and dying.

I'm replacing with hydrocortisone, pork thyroid (levothyroxine did very little for me), growth hormone, oestrogen, progesterone, DHEA, and testosterone. I'm fairly sure that's the lot!

I get the hc and growth hormone from the NHS but I've found a good private doctor who makes me up a bioidentical preparation of the last 4 (the so called 'sex' hormones), and I have persuaded my GP to give me a private prescription so I can buy my thyroid hormones from a UK online pharmacy. Sounds more complicated than it actually is - but I now feel about 100%, I think.

I know what you mean about care -it has been a real struggle to get to feeling normal again. I tend to nod and smile when I am forced to go to the consultant - then do exactly as I please afterwards, in terms of medication. And don't ever get me started on my endocrine nurse...

Hello again catslave, I am with you on the endocrine nurse, I actually had a proper fall out with mine a few years ago and have only just about forgiven her. Talk about condescending and preachy!!
I actually persuaded my endo to prescribe T3 only (liothyronine) to me which took me ages but I feel much better on that than i did on levothorxine .
I take 20mgs of HC daily, 60mcg T3, 0.15 GH, 0.25 oestrogen patch, 50mg DHEA. Think that's it !! My endo who I got on well ( and used to see privately aas well as on nhs) with has recently emigrated and I'm a bit unsure of the new one.I travel a long way to the clinic in Hull to see him, where do you see your doctors?sounds like you have it all covered.
Did it take long to get help and a diagnosis? for me it was 18 (long ,hard) months.