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Underactive thyroid
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Message 1.Â
Posted by Betsi clwc clwc (U11288289) on Friday, 30th March 2012
Brought over from the Bull.
Poppy the change it makes to your life is amazing. I have been recently bumped to 175mg. I wouldn't worry about the long term effects. -
Message 2
Posted by DragonFluff (U6879248) on Friday, 30th March 2012
There aren't many long term effects, from what I've read.
The long term effects of not taking thyroxine, however, are not good.
I begin to droop after about 12 hours if I've forgotten to take mine, and a whole day without would knock me back for a week.
Betsi, I think you mean mcg, microgrammes! If you took 175 milligrams, you'd run round and round for two days, then explode. I think!
Poppy, please don't worry about this, just take the tablets, feel the effects and enjoy your life again. I remember when I was first diagnosed and prescribed thyroxine (oh, that's a story and a half too) and the difference was huge.
Fluff -
Message 3
Posted by Betsi clwc clwc (U11288289) on Friday, 30th March 2012
Snork Fluff!!
As I pressed post I realised my mistake. An exploding Betsi would not be a pretty sight. -
Message 4
Posted by poppy (U2220656) on Friday, 30th March 2012
Thanks for bringing the thread over. I knew I would feel cheered up by coming to Mustardland. I'm on an initial dose of 75 thingies. Diagnosis was accidental - my doctor thinks I might have irritable bowel syndrome but wanted to do various blood tests. I had assumed tiredness was due to a 5 hour daily commute and a horrible boss. I have been putting on weight, getting anxious about silly things and having some hair loss.
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Message 5
Posted by DragonFluff (U6879248) on Friday, 30th March 2012
Dry skin and flaky fingernails too, Poppy? Join the club!
A 5 hour commute and a horrible boss is tiring enough without a dodgy thyroid.
I am sure the tablets will make the difference. As said above, it might take a bit of adjustment to get the right dose - tell your Doc if you have any odd side effects - but once you're there, it'll be great.
I hope you're reassured by the fact that Betsi and I are both hypothyroid too and we're absolutely normal. (Shurrup, Betsi, I'm trying to make Poppy feel better.)
Fluff x -
Message 6
Posted by Betsi clwc clwc (U11288289) on Friday, 30th March 2012
Didn't realise the hair loss was a symptom. That would explain why my hair has become very thin. I always presumed it was the hair dye.
I was diagnosed about 15 years ago and it does make a difference. I have also noticed the difference when they upped my dosage ater Christmas.I hope they keep it at this as I feel so much better. -
Message 7
Posted by Auntie Molly (U14110968) on Friday, 30th March 2012
Another member of the hypothyroid club. On 75 mcgs. My skin and hair haven't suffered, it's putting on weight and not being able to get it off that I've noticed, as well as memory and concentration problems.
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Message 8
Posted by Jane (U1484860) on Friday, 30th March 2012
Hi
Another underactive thyroid here.
If you've just been diagnosed be warned that it can take some time to get balanced - 18 months for me!.
I'm currently on 125mg but off to the Drs next week as the last blood test was boarderline but I can feel they symtoms kicking in and need it upped.
the worst thing for me was the tiredness. Total utter unbelievable exhaustion. I forgot things, I didn't eat well especially in the evenings, I woke and lay in bed feeling exhausted
I'm not sure what side effects you are concerned about but trust me when it finally 'goes right' you will be a new person
Jane -
Message 9
Posted by Morganish (U9108847) on Friday, 30th March 2012
Interesting thread. I have wondered for some time whether I might have an underactive thyroid as well as being menopausal. My blood test showed that I was at the lower end of normal and my GP said that was what he went by and has blocked my request to have a more thorough investigation because he says it's just the menopause. Interested that dry skin and nails and memory and concentration impairment are a part of it because they are my main symptoms.
I also have a couple of friends who have overactive thryoids and in their cases it also took a long time for the medics to acknowledge the fact. One friend was so emaciated by the time the condition was acknowledged (her bloods were coming in as just on the top limit of 'normal') that she was investigated for cancer before they decided it was thyroid problems. -
Message 10
Posted by Bractondefeated (U3173859) on Friday, 30th March 2012
Oh thyroids! I had a total thyroidectomy a couple of years back so I need to take thryoxine and i still havent been on he same does for more than 3 months at a time! Currenty 100 one day 125 the next. I also had associated (dont ask how) sleep problems! So I have a cpap machine.
Still feel tired but I AM overweight which cant help!
Bracton -
Message 11
Posted by poppy (U2220656) on Friday, 30th March 2012
I also have sleep apnoea and a CPAP machine - the tiredness associated with that went when I started treatment but in the last year or so began to feel very tired all the time, very anxious, put on weight and just felt very slow.
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Message 12
Posted by dondy (U3463640) on Friday, 30th March 2012
Hello Poppy
Sorry to hear you have this condition, but the good news is you have been diagnosed and are getting treatment.
I was diagnosed 6 years ago, when seeing my GP for something esle (digestion problems). He looked at my neck, and decided he should do thyroid blood tests. Looking back I did have a pretty pronounced goitre (swollen neck). This is associated with autoimmune thyroid disease (Hashimoto's) - mine was probably triggered by a nasty virus, but you have to have the dodgy gene or whatever it is lying dormant.
Am currently on 100mcg, and my bloods are good, though I still have days when I feel knocked out and have dry eyes and mouth (which can come with underactive thyroid). But it is manageable and actually its not a disaster if you miss a tablet, as thyroxine has quite a long decay, so stays in your body for several days.
I do remember suddenly having much more energy when first being put on thyroxine, and losing half a stone really quickly with no effort on my part (sadly this has now gone back on, but my chocolate habit may be part of the reason !)
On the plus side, if you don't qualify for free prescriptions already, you will now. Ask the GP surgery for the relevant form. Having hypothyroidism means you don't have to pay for any prescribed medications, whatever they are for (a quirk of the original NHS system).
Good luck with getting your thyroxine levels right.
dondy -
Message 13
Posted by The equally pointless susierratic (U1485524) on Saturday, 31st March 2012
I was diagnosed hypothyroid just after giving birth to my 16 year old. So I've been on thyroxine for about 15 years or so. Currently on 150mcg per day. When I was first diagnosed all those years ago it took several months of blood tests and adjustment of the dose until they said I was on the right dose. (Determined by their blood tests).
Unfortunately, I have never experienced the significant improvement in how I feel that others have described. I have been back to the endocrine consultant on countless occasions but the blood tests always say that my thyroxine levels are as they should be. He did increase my dose because I wasn't feeling good but I still feel constantly tired, can't lose weight and all the other symptoms. Now the menopause has kicked in and I am also on HRT but still don't feel much better. -
Message 14
Posted by dondy (U3463640) on Saturday, 31st March 2012
Unfortunately, I have never experienced the significant improvement in how I feel that others have described. I have been back to the endocrine consultant on countless occasions but the blood tests always say that my thyroxine levels are as they should be. He did increase my dose because I wasn't feeling good but I still feel constantly tired, can't lose weight and all the other symptoms. Now the menopause has kicked in and I am also on HRT but still don't feel much better Â
Susie
Sorry to hear it has been difficult for you. I have problems too sometimes and have spoken to the endocrinologist again. Unfortunately, the test checks if you are in the "normal" range for most people and some people's normal is not in that "normal" range. However, NHS guidance is to go with the blood results and you have to push really hard to get more help if your bloods are "normal".
My GP has a theory that in future the blood tests will be more refined than they are now, but that's not much help at present !
I gather they can do a test for T3 levels of thyroxine, as well as TSH, T4, antibodies etc, but it is expensive so the NHS won't do it. Apparently some people can't convert T4 to T3 very well, and unfortunately that's what the body needs to do to work properly.
Also, people with underactive thyroid are more prone to other autoimmune diseases, so if you have another undiagnosed one of those, that can make you feel awful, but you assume it's thyroid symptoms.
Plus being a woman of menopausal age, as lots of hypothyroid people are, gives some GPs an easy opt out by saying that any problems are menopause related.
We have to keep plugging away. There are some wacky theories out there on the web, but also useful information on self-help things to try as well.
I have found this website useful:
e.g. have just discovered the brand I am currently on (this month, that is - it seems to change month to month despite BMA advice but that's another story !) has had its licence suspended because some people have found their TSH shooting all over the place.
Unfortunately, self-management seems to come into it, as with a lot of other chronic conditions. Doctors seems to struggle if you don't fit in the nice little text book box (and I speak as one who lives with a medic !!!)
dondy -
Message 15
Posted by poppy (U2220656) on Saturday, 14th April 2012
Well, I've been on thyroxine (75) for a couple of weeks now - haven't noticed much difference although OH thinks I have more energy and am less anxious. I am getting headaches though and wondered whether they might be a side effect?
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Message 16
Posted by DragonFluff (U6879248) on Saturday, 14th April 2012
Hi, Poppy
I've just had a look at the patient info leaflet in my thyroxine packs, it does indeed say that headaches can be a side effect - but one that should be discussed with your Doctor as it might be an indicator that the dose needs adjusting.
Fluff -
Message 17
Posted by poppy (U2220656) on Saturday, 14th April 2012
Thanks, Fluff - I'll talk to my doctor.
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Message 18
Posted by Betsi clwc clwc (U11288289) on Monday, 30th April 2012
This is not a bump but asking for advice from fellow sufferers.
This weekend I've really struggled with tiredness but today has been the worse.
I felt as if I was drugged and totally out of touch with the world around me. Everyone is floating in front of me as if in a dream. At around 4 this afternoon ping I was back to normal again.
Has anyone else had these symptoms? This is not my first time, but today it was worse than it ever has been.
Thanks folks and keep popping the thyroxine! -
Message 19
Posted by dondy (U3463640) on Wednesday, 2nd May 2012
Betsi
I'm sorry to see no-one has answered your question yet.
I do get similar feelings on occasion, maybe not quite as extreme, more like feeling as if I am under water or that my head is full of water, if that makes any sense.
I hope you are feeling a bit better now.
I find if I don't get enough sleep my symptoms are often much worse, also I think hormone levels are a factor, though that's probably my age and not necessarily related to having an underactive thyroid !
dondy -
Message 20
Posted by welshteddy (U3680635) on Thursday, 3rd May 2012
Betsi, I used to get a feeling that I can only describe as if I was watching a film. ie. everything was going on around me but I was separate. I had this feeling as long as I could remember. However, I hadn't actually realised until you mentioned it, that I haven't had this feeling for a long time.
As Dondy said it may be nothing to do with your underactive thyroid. In the last 10-12 years since I began taking thyroxine, I have also become post menopausal, stopped having migraines, and no longer have 3 toddlers to look after. So it could be any or all of the above which has got rid of the spaced out feeling. -
Message 21
Posted by poppy (U2220656) on Friday, 4th May 2012
Just back from doctor after first post-levothyroxine blood test. 6 weeks ago my TSH was 13.1 and T4 was 11, now TSH is 1.72. Doctor says that it is good and shows my dosage is correct. Am beginning to feel better although she has nagged me about my cholesterol which is quite high.
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Message 22
Posted by dondy (U3463640) on Friday, 4th May 2012
Hi Poppy
That sounds like good news and I'm glad you are feelng a bit better.
I founhd my cholesterol was high-ish, but as I'd never had it tested before developing hypothyroidism, I don't know if was always that way, or was linked to the hypothyroidism (as it can be).
Taking one of those little drinks a day, plus using their spread instead of butter/margarine has helped me. (I use the ones that start with B-e-n, but others are available !)
It was also lower last year, when the only new thing I was doing was longer daily walks with the dog. This has slipped a bit with the bad weather (dog is a fair weather walker !) but I'm hoping to get back on track if it ever stops raining !
dondy -
Message 23
Posted by poppy (U2220656) on Tuesday, 8th May 2012
I will try the drinks and eat lots of oats. In fact apparently my cholesterol is very high and not quite high. Now that I've been on thyroid pills for a while I will try and get another cholesterol test and see if it makes a difference. When tested at time of thyroid diagnosis it was 6.8.
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Message 24
Posted by Betsi clwc clwc (U11288289) on Tuesday, 8th May 2012
Poppy I was very surprised to hear you have had such a breakdown of your results.
I usually get told OK by the receptionist. Last time it was only I was in the doctors for another reason I noted my result was in red on his monitor. On questionning he then upped my level of Thyroxine again. -
Message 25
Posted by poppy (U2220656) on Tuesday, 8th May 2012
Betsi, I had to ask for the breakdown of my results for both my thyroid test and the cholersterol test. The first doctor just said I needed thyroxine - when I had a second test I asked for the figures. I also pointed out that my cholesterol had been tested at the same time and nobody had said anything about that. Second doctor wrote down the results for me.
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