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.

Can I join in?
I was diagnosed hypothyroid about four years ago through being treated for something else. I was 54, but may have had it for a very long time. I have always had a swollen looking neck. My father also had it.
I had results of my latest blood test today and have been told to reduce my tablets from 150 mcg to 100. I thought I might have been taking too high a dose. Kept getting hot flushes, and a high heart rate.

Just finished watching GBBO love the show but torture for someone trying to give up gluten that loves her cake!! need to find new recipes (says she that can turn scone packet mix into something resembling hard biscuits ) anyone know any ?

Can I join please?

Was diagnosed over active 3 years ago, following emergency cardiac admission for AF.

Had seen my own gp several times in the months before due to weight loss, continual exhaustion, peeling skin on the palms of my hands and constant illness (sickness and diarrhoea, mastitis x 3, tonsillitis, chest infection etc).

Carbimazoled for a year, then had radioactive iodine last Jan. Under active by May '12, started on 100mg thyroxine, gradually reduced dose til August when stopped altogether. Due blood test next week, which I'm fairly sure will show I'm overactive again...have eaten ridiculous amount this week and lost 2lb

So, I spent nearly a month away from my dcs following radioactive iodine (dc3 was under 2) last year and am now back to where I started. Thyroidectomy is other option, but I'm a lone parent and work as an adult learning tutor, so the thought of damage to my vocal cords is a huge worry.

My weight has yo-yoed between 10 and 15 stone in the last 3 years, so I have every clothes size from 10-20 in my wardrobe. I've been losing really well with Slimming World and am 12 and a half at the moment, so at least that's going well.

Hello - can I join in too?
I have just been diagnosed underactive and have started levo 50mg.
Can I ask what sort of TSH levels others had when first diagnosed please? Mine is 79 and i was wondering how that compares to others.

I have to admit to feeling so very tired amongst other things.

I've been thinking about my post about work being a struggle... I really don't want to take time off because of my thyroid but things are becoming a real struggle. I only have myself - and occasionally DH! - too look after but after work I get home from work having finished late because I started late, slump on the sofa then go to bed. Cooking is hard work. Exercise, no chance!

Anyone have experience of this and work when feeling so awful. Wondering what I can ask to work from home. I've done that rarely and find it less knackering, don't know why. If I asked to cut my hours I'd likely be told no and can't afford the drop in pay. Advice greatly appreciated

Welcome Helzapoppin Yes, are all likely to need to have our dosage adjusted now and then. Go and have a blood test booked, then there will take a bit of time before you feel right again until you settle on the right dose. Hope it doesn't take too long (let us know how you get on).

ballstoit Welcome It is good to have people posting here who have been on carbimazole for hhyperthyoidism so people reading this with hyper symptoms can see there is something their doctor can do to help. I know someone with small children who had radioactive iodine treatment recently. Like you, she had to stay away from her family most of the time, which was hard. Can I ask, did you have your treatment on NHS?

Well done on losing the weight! I am determined to be slim again and stay slim (but sometimes when hypothyoid, determination is not enough!)

Welcome Hattie We all have to start on a low dose and adjust to that before having it stepped up, as a step up of 100mcg or more could be dangerous, if I have understood correctly. You'll need to keep going back. Also, before settling on the right prescription, you will need a blood test to check your thyroid function is within range. Usually the dose arrives at something lower the smaller you are and the lower yor TSH.

We can compare results, but we will need to know lab ranges or the numbers are meaningless. The same blood sample can be sent around the country and come back with a different number, depending on the callibration of the testing equipment in each laboratory (but it should have the same result of coming from someone who is hyper/within range/hypo, despite what is said about 'normal ranges'.)

When I went to get tested, I was feeling terrible, crying lots over the silliest things, couldnt stop putting on weight, feeling extremely cold, etc. and when tested (before treatment) i was 5.8 range: ('mild hypothyroidism, shouldnt need much thyroxine.') I am also 5'1" and weigh about 9st 7.

I was impatient to get more thyroxine and feel well again, so when prescribed 50mcgs again, after 8 weeks, I asked for some extra 25s so I could raise the dose a bit at a time before the next appointment. I gradually raised it to 100, was feeling great, tried 125 and that was far too much. (I had a horrible pain in my chest). This was not wise! I realise now that I could have given myself a heart attack. I was trying to cut down on the number of appointments I would need and see a doctor less and nearly ended up needing emergency care. I hope my cautionary tale helps others understand the risks involved. But also, help give an idea of safety margins. The next blood test I was taking 100mcgs per day and I was hyperthyroid. 0.02, range: So am now taking 50mcgs and awaiting tests. I don't feel like 50 is enough, but want to see what the next blood test result says. (Doctor only wants to prescribe 50mcgs now).

draws of drawers Are you on any thyroxine? When was your last blood test? Perhaps your dose could be adjusted to make you feel better, then you wouldnt need to give up work? Or, if the doctor can't, will they write you a note until they find out what is wrong?

Can I join to? I was diagnosed in 2001 after birth of DS2, on 200mg of Levo now, dose has gradually increased over the years, I have no symptoms now ( I think). I hope things are better these days with GP's, when I first went to my GP with complaints of excessive tiredness, inability to lose baby weight, I was point blank refused any blood test, told it was completely normal to feel so knackered, took me 3 visits and me being very insistent. Finally and reluctantly GP decided to humour me. of course when resultant came back that I was massively underactive, she did not even look shamefaced. As I say I hope GP listen to patients now.

Hi yeg, thanks for the reply . I had a blood test a month ago and my dose was upped by 25mg but I feel worse than ever. They are testing me for other things too and I have another blood test in a months time. I'm going to speak to my manager later and hope she is sympathetic. I know I'm not working well at the moment and it's affecting my work so I'm worried about that. Taking time off though would be bad - I'd like a new job in the next few years and new employers always ask about sickness record. If that wasn't the case I would beg the doctor to sign me off!

Orchidlady Welcome! That doctor sounds terrible. I've moved around and had some appalling treatment by some doctors, and changed surgery to another local one last year as the doctor I had seen was so rude and unhelpful. (Although apparently that doctor left the practice soon afterwards.) So sadly, I think there are still some bad apples out there. We should be better at making official complaints but it isn't easy with thyroid related symptoms to put a complaint together (or find the time).

draws I see what you mean. Working from home (if you can) does sound as if it would be a good solution, at least on a trial basis, to see if you are able to work better that way. That might buy you time while the testing is getting done and you find out what else is going on. Going for all the appointments can be disruptive of itself, so cutting out journeys to and from work could mean you can still put in a full day at home around tests and appointments.

Hopefully someone else will have some advice!

My understanding is that hypothyroidism is a long term health condition and comes under the provisions of the Equality Act, which superseded the Disability Discrimination Act. This means that you can ask your employers to take your health into account and make reasonable adjustments.

www.equalityhumanrights.com/advice-and-guidance/guidance-for-workers/the-employers-duty-to-make-reasonable-adjustments-to-remove-barriers-for-disabled-people/

Thanks yegh In all other ways she was actually a good GP, I think possibly ( and not making excuses) but so many woman struggle to loose baby weight and would love to think it was UA that was the problem LOL. Maybe lots of people demanding tests for this reason, I dunno. I was an older mother and he was a big baby, wonder if there was any connections sometimes. My levels have been stable for years, 200 mg seems higher level than most though. Sadly also developed diabetes and blood sugar levels really high, I do nothing in halves

Can I just say that having a TSH of

Ooops sorry - can't figure out how to edit.

That first sentence should read:

Can I just say that having a TSH of

Hi
This is my first post, but I'm finding out stuff about the thyroid I never knew, and I was diagnosed as hyperactive 16 years ago! I was put on carbimazole which made me underactive within 6 weeks, so dosage was reduced to a very low dose. I remained fairly steady until approximately a year ago, when my dosage was increased. I think that this probably ties in with being peri-menopausal, but find it difficult to get to a knowledgeable GP. I shall be watching this thread with interest. Thanks.

Hi stokeymum and welcome. There do seem to be fewer people who have hyperthyroidism than hypo but as more and more join hopefully there will be more who have similar experiences.

Out of curiosity, what is it like on carbimazole, does if bring you back to feeling good all day, or do you still get parts of the day when you feel low or hyper?

RockinD Good catch! Thank you.

Hi yeg, mostly it's been fine, although I'm very aware of times when I feel a bit "off kilter". I have my bloods done every 6 months, but my levels have always been a bit odd. It started/ I noticed it after my 3rd child was born and we'd moved house, so, with 3 young chidren and a house to renovate, I decided against the radioactive iodine approach or surgery. What is slightly annoying is I have to pay for my prescriptions, but if I was underactive, I wouldn't have to...

Thankyou yeghoul- that's helpful and food for thought.
I went to my GP for something unrelated (although i am beginning to wonder about that) so when i went back for blood results this diagnosis was a bit of a shock.

I had fT4 & TSH measured
fT4 @ 9.0pmol/L

Ranges: 8.80 - 18.80pmol/L
TSH @ 78.76mu/L
Ranges: 0.30 - 5.00mu/L

Has anyone experienced neck / back pain with underactive? I've had that for 6 weeks now and am wondering if they are connected at all?

Hattie I'm underactive and get, well, everything-pain. Neck, back, sides, arms, legs... I just seem to hurt all over I know when I'm on the low side because by the evening I feel so sore and tense in my muscles, getting up and sitting down feels like I did a marathon session earlier.

Anyway, sorry, but yes! I certainly get such pain as a result of my hypothyroidism.

Btw the range for TSH should be 0.3-3.00, but a number of docs like to say, "Oh well, up to 5.00 is fine". It isn't

hoping I haven't misread your post!

PS It used to be 5.00, years ago, and was redefined ages back, but yet so much docs are behind on that.

With me taking Carbimazole, I was overdosed and I went from being a skelelised nervous wreck, bug eyed maniac to a ballooned up bloated, speech slurring cretin in just the first few weeks.
I was taking 12 tablets a day - 3x4 daily. Was 40 years ago and do not know what the dosage was. Saw GP and he told me to see my endo at the hopital, who reduced them. It was quite a while before I was back to my normal me.
I wish now I had insisted on the op instead of experimenting on tablets first. Had the op 4 years later after it came back and was told I was dangerously ill. Had to go back on the Carbimazole for 6 months. Then was 3 weeks in hospital being given iodine in milk to drink to quieten the Thyroid down even more before they would do the op.
Eventually had the op 40 years ago next May. In 1974.

Ranges vary from area to area. Where I live, the lab range for TSH is currently 0.35-6, but I had an endo tell me that he wouldn’t treat until TSH was over 10. Mine at that stage was 4,2, with Ft4 and Ft3 bumping along the bottom of their ranges and he told me there was no endocrine reason for my symptoms. Pah!