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.

Couthy it's only raw brocolli that's goitrogenic...

This might help to understand it a bit. But the foods cannot make nearly enough difference and once you're on an optimum dose of levothyroxine it won't matter.

Thanks yegods, I'm only on 75mg just now having reduced from 100 and feel better, not as tired or anxious but have other weird muscle stuff, tingling/twitching and now this tight throat and headaches, hadn't thought of reducing further.

Well it could be something else of course, or like me with my iron deficiency, there could be something else (hopefully minor) at play as well.
Yes, I love that feeling of being hyper after hypo for so many years - all that energy and I got so much more done in a day - right up until I got a nasty pain in the chest! Very scary! (And I was a pain to live with, no one could get a word in edgeways and I never sat still. Anxiety took over from depression. Not good.)
Could you try taking just 50 once in a while and see if it eases?
I'm on 75mcg and need a 25mcg extra every few days, but am losing weight now so might not need that extra bit soon. (I was taking 100mcg, once or twice took 125mcg when I had the sore throat, so it didn't take much to be over - I really was over too, my test results then showed as getting hyper; TSH 0.02 etc.)

All nuts, I'm afraid. Supplement might be an idea, once bloods come back. And do many people eat raw broccoli?!

goodness poor kid :(

as said the main thing is to get your thyroxine levels bang on. this can take a while, plus you have to be persistent if your Dr isn't that up on thyroid stuff. I've noticed this changing in the 16 years I've been hypo (from age 21). for years I struggled on. my biggest pointer, aside brain fog, tends to be constipation (sorry tmi); if I'm not 'regular' I'm not usually on the right dose. and alternate day doses for me can make a big difference (eg 125/150).

another thing I've noticed over the years is that once I'm on the right level, trying to do some exercise which raises my heart rate (skipping, swimming - trying to push myself- cycling etc) along side some yoga really helps to push my over all health / flexibility up. I couldn't do it a lot till I was on a good level though.

it's extremely hard to ever envisage doing lots of exercise when you feel hypo crap. I can only push myself to try now as I know that eventually I feel so much better.

darjeeling thanks your post gave me a bit of hope. That sometime I might be able to excercise again, cannot at the moment only very gentle (like an oap ) or I'm wiped out all day and it is driving me nuts!
I am just up to 125 but still feeling v tired think I will need to do the 125/150 but later once I am used to 125,
I get really upset when I think I will never get back to being able to swim properly or go to my zumba again I love these things . I will keep hoping that once my meds are right I will have some energy again (it makes me a bit claustrophobic if I think I am stuck in this crap state for ever) so thanks

I'm just glad that there is an answer as to WTF is wrong with me, and that with the medicine I might get towards something approaching (a new?) normality.

This half-life is killing me insidiously. I can't do anything I used to. Can't look after the DC's, can barely manage the food shopping, even the (should be 10 mins) school run leaves me needing to sleep for 1 1/2hrs...

ladies it's fucking horrendous and people with no experience have simply no idea. I'm 37 and have just had my first child; exercise I did was pre child HOWEVER when possible I'm going to try my best to get back to some sort of level.

after some research on fitness etc I actually prioritised heart health (not weight loss, though I'm not over weight). ie trying to work on that muscle, simply doing things that raised my heart rate. this then slowly meant I was generally more able to swim etc, inc run which I've never done before.

I then started looking at muscle strength - just climbing stairs with weights etc but tbh swimming I feel does the same. I used a kickboard too. I can't do front crawl but just did breast stroke and doggy paddle (the most inefficient stroke but actually therefore is really hard and works your heart rate! I didn't care what people thought)

I used to poo poo yoga till I started. that seriously helped A Lot. took a while though, but if you accept its going to take time it's easier.

all I wanted was to feel capable. I've spent so long feeling incapable. I hate it.

I think it's a double edge sword though - if you've been hypo for a while and physically struggling then you're not necessarily going to feel as great when tsh is 'ok' as if you'd previously been fit iykwim? this is why it can take a while to feel fully better. but, if I were a Dr, this is why I'd aim for a tsh of around 1 or between the lowest range and 1.

my Dr actually said they now don't panic so much about having very low tsh if patient feels well. also, my friend had a thyroid test and her tsh was naturally 0.3. incidentally she was feeling crap and tired due to stress and not looking after her self.

these are just my experiences though.

Agreed with so much just said. Really took a hit from work this week, had a big event to attend but it's been nearly 2y since my last one. It's tiring for anyone, but this time it totally wiped me out. 2 days later and I'm still hurting Feet were crazy swollen for over a day, everything aches... if I can get GP on board, after next tests coming up soon, if it doesn't already show that I've worsened then I'm going to ask about an alternate day increase. I've gone hyper before do don't want that, but pre-DS I more or less normalised on a low dose of 50mcg, was losing weight, never exactly like pre-hypo but doing relatively well. Since having DS it's been all over the place; went to 75mcg in pg, stayed on it till pp blood tests showed I was hyper (which I had been expecting due to symptoms), within a month I crashed back to hypo and went back on 75mcg where I've been ever since. However symptoms have been worsening despite normal results, hence I do not accept this as normal. We'll see what happens.

As for exercise, it will get there. I started just walking more and more, and I'm getting better, now doing Zumba at home once a week for an hour and it makes me feel good. With time I hope to do it more often, then eventually bring some resistance training back into my life (which used to be my main thing some years back now! Will have to be much better however to bear weight on arms, wrists etc - currently have painful left wrist for over a week now, painful right shoulder for 5 days, plus existing chest wall and right wrist issues). It will happen

The getting back to fit thing - that won't happen for me - I've not been 'fit' since my epilepsy diagnosis at 22, as any exercise which raised my heart rate also gave me seizures, and I haven't been able to swim since my diagnosis.

Tbh, I'd settle for being as 'fit' as I was when my arthritis started 2 years ago. I'm not asking for a fucking miracle, but to be able to sit up, to be able to do the school run without needing to sleep, to be able to go to the park and puddle jump with my 2yo...

When do you get your test results, Couthy?

GP said 2-3 weeks, phlebotomist said 2-3 days. I'm taking that to mean that although the results will be accessible on the computer in 2-3 DAYS, my GP won't bother looking for them for at least 2 weeks. The only one that's going yo take longer is the thyroid antibodies test as apparently my hospital does those in batches, so that one could be a few weeks.

Also caught the DC's tummy bug and it's affecting me far worse than them.

Yeah, phone the surgery to get the results on Monday! It doesn't matter if you don't have the antibody test back, that just tells you if the hypothyroidism is caused by hashimotos. Since every GP tells us that the antibody test isn't 'therapeutic' and doesn't affect how they treat the patient, don't let it hold anything up. as it is very likely to be hypothyroidism, you're going to need a few appointments and blood TSH blood tests before you get to the right dose, so there'll be plenty of opportunity to pick up the anti-auto immune antibody test down the road. :)

Sorry to hear you have a tummy bug, hope you're feeling better soon.

Just phoned for the results - apparently my thyroid function us normal.

TSH 0.84, range 0.4 - 4.0

So WTF is going on then? I have a bucket full of symptoms of hypothyroidism, and then my results come in as normal.

What else can make your tongue go scalloped, make you put on weight despite eating habits not changing, make the outer bit of your eyebrows go, make you extremely sensitive to the cold, have extreme exhaustion, joint pains and muscle aches, and have periods every 2 weeks.

The bastard of it is that right now, as of a few days ago, I actually feel a bit more energetic, and have suddenly developed AWFUL insomnia that is keeping me awake until 4.30am.

WTF is fucking wrong with me??!!

I have a pelvic exam at the GP tomorrow to try to find reasons for the periods every 2-3 weeks. All my other blood tests came back 'normal' too.

The only one that isn't back yet is the thyroid antibodies.

Is it possible for your body to naturally switch between HYPOthyroid and HYPERthyroid?!?!

I can't carry on like this, being dismissed by the medics, as if my pain isn't real, as if my exhaustion isn't real. I don't WANT to be like this, I just want an answer and some medication to help!!

The only one that isn't back yet is the thyroid antibodies.

Is it possible for your body to naturally switch between HYPOthyroid and HYPERthyroid?!?!

Yes, hashimotos does exactly that! (So a positive on the thyroid antibodies). I don't know what is going on either. That is so frustrating to not know and for all the tests to come back negative like that.

Why don't doctors want to treat a whole patient and get to the bottom of what is wrong with a person? Why is it now a patient's job to manage a doctor, when did that start happening? It's mad.

Right. So I should still wait on the results of the thyroid antibodies test? Because I'm at my wits end. From being totally exhausted, now I've got crippling insomnia. I've more energy than I've had for 2-3 months, too. Yet I've still got crippling joint pains - especially my hips. I'm not totally sure what's going on, but I know I'm that the insomnia is partly the joint pain keeping me awake. I've been so bloody hungry the last few days, too. Hungrier than I've been for 2-3 months...

when does the thyroid antibodies test result come back, do you know? Another week?

Even if it comes back positive, it could be that the GP will not treat you with levothyroxine. Maybe the blood test was taken when you were going from hypo to hyper, and it skewed the result (I don't know if that can happen though - even if it can, they still wouldn't want to give you levothyroxine and risk you getting too much and it giving you a heart attack. Living with the pain and the rest of the symptoms is still better than them prescribing something that kills you in their black & white books!)

The phlebotomist said the results could take 2-3 weeks for that one as they do them in batches?

Couthy - so sorry that you are not getting a diagnosis. I have only recently been diagnosed and am still learning myself and so can't offer any possible answers but i do hope you get a breakthrough soon

Couthy You really do need to get the result of that antibody test back. It’s certainly beginning to look as if you might have auto-immune thyroid disease. In fact you really need a full panel, but it looks as if the lab has not done FT4/FT3 because your TSH is beautifully within range. I hate it when that happens , because that TSH result on its own means nothing other than that your pituitary thinks your thyroid’s doing OK.

Symptoms of hypothyroidism are notoriously non-specific and could be down to all sorts of things. However, the signs are specific and you seem to have a good list of them. Slow ankle reflexes aka ‘Woltman’s Sign’ and high cholesterol are also diagnostics for hypothyroidism that were used before doctors started to rely on the blood test. Have you had your cholesterol checked?

Why don’t you start taking your temperature, in your mouth, every morning BEFORE you get out of bed? The normal range will be between 36.5 and 37oC. Keep a record of where you fall. There is only a very small list of things that make your temperature consistently lower than normal and one of them is hypothyroidism.

I will start taking my morning temp as soon as I get a new thermometer. Nope, no T3/T4 tests. Will ring for results of thyroid antibody test in about a week.

Cholesterol was checked in Nov 2012, and was 6.2!

Not been checked since.