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.

Thanks yegods. I'll hang tight and see how things go, might go back to Dr after Christmas if period still is AWOL.
Cls how did consultant go?

Thanks for replying barbies. Actually, it was wrong of me to say you are 'low' without checking the 'normal' range for each test. A high T4 indicates hyperthyroidism (more thyroid hormone in the blood) a high TSH indicates low thyroid function.

When the thyroid, for whatever reason doesn't produce enough thyroid hormone, the pituitary detects this reduction in thyroid hormone, and it moves into action. The pituitary then makes more TSH, to help trigger the thyroid to produce more thyroid hormone. This is the pituitary's effort to return the system to "normal" and normalize thyroid function. TSH is a measure of how well your pituitary thinks your thyroid is doing.

That is why a high TSH is seen as an indication of low thyroid function and why it isn't necessarily always the best test to use.

Thanks for asking Barbie - been a loooong day :( basically he's diagnosed me with Functional Dyspepsia possibly caused by wheat/dairy intolerances, so have to think about at least reducing these and taking omeprazole for it. B12 wise I definitely cannot have the injections at the moment as I am allergic to cobalt in them, so need to see an immunologist now for desensitisation!!!
Bloods for tsh Monday though, and the journey continues!

So glad to have found this thread!

I have Graves' disease I went hyper following a miscarriage last year and I now I know the symptoms I would say I was hyper following a m/c 10 years ago.

I have to say my treatment was excellent I saw nurse at my gps and explained my symptoms and she said she had become concerned as I was behaving more anxious/on edge when she saw me. Got diagnosed in February and saw the endo within 6 weeks.

I'm currently TSH 2.45 and free T4 11.3 so I'm back to normal but I already had af and have found this is worse then before I went hyper and I'm really suffering with diaherra and loose bowels- can you get ibs/coaeliacs with hyperthroydism

Hi wanna - you can get diarrhoea etc if hyper as it's one of the symptoms, you can also be more likely to develop pernicious anaemia which is a Vit B12 deficiency caused by a lack of intrinsic factor. This means you can't absorb b12 through your diet and will the patient will need injections, if this was the case (and I'm not saying it is!) you would then be more susceptible to developing Coeliac disease.
I'm currently going through the motions (excuse the pun!) with it all myself atm.
Defo get levels checked x

I'm really depressed now. For various reasons, basically the ineptitude of three GPs and ten (yes ten!) different doctors at the hospital, it has taken nine years that I know of for me to get my under-active thyroid treated, and I've probably had it for a lot longer than I've known.

I started treatment in June and initially all was going well. I then hit the wall and went back to be tested again. My TSH, which we know has always been unreliable, is now suppressed, but my FT4 is only 14.1 (9 - 26) and I still have loads of symptoms.

I am on 100mcg levo and the GP won't give me any more. I can't go back to the hospital because after 4 years of f@nnying about they told me I wasn't hypo after all, so the only diagnosis I have is CFS.

Between June and September I had real optimism about my health for the first time in a very long time. Now I feel as if I will never get completely well.

Moan over

Hi Rockin. Sorry to hear that. Have you tried changing your diet at all? Some people seem to find cutting down on things like brocolli, cauliflower, sweetcorn, sweet potato etc can make a bit of a difference.

Sorry to hear you are having such a rough time Rockin. Really hope it improves for you soon.

SnowieBear Thankyou for your reply back on the 30th. Great link and i have been reading a lot. I still have the neck pain but am leaning towards it being due to (work) stress.

Good news today though - went for first blood results since starting levo
TSH down to 12.82 from 78.76 (range 0.3 - 5)
Although the "thyroid peroxidase antibody level" is >10000 IU/ml (with normal range of 0.00 - 5.61 IU/ml)

So levo dose upped to 75 from 50. More blood in a month.

Just thought - i took my levo an hour or so before having bloods taken. Would that skew the results at all?

Hattie, taking your levothyroxine an hour before shouldn't make any difference. If, say, you'd been taking a double dose for a couple of weeks, yes that would! Or even a double dose a day or two before, but not your prescribed dose.

Your anti autoimmune count is very high - off the scale by the looks of it. No wonder you've been feeling so tired! Hope you get to an optimum dosage soon.

The official line on this from Professor Weetman, former chairman of the BTA, is that you should have your blood drawn as early in the morning as possible and that you should not take your thyroxine until after the test.

If you take your thyroxine at night, you should not take it the night before the blood draw or the night before that. This causes no harm as thyroxine has a long half life.

This method taps into the circadian rhythm of TSH and also avoids getting a false ‘high’ result, which can result in dosage being inappropriately reduced.

Thankyou both. Both ways makes sense (unhelpfully). My reasoning for taking it was because i am on a low dose and this is a gradual process and i didn't think one dose could lower the TSH too much.
But then what the Professor says is really interesting too.
I tend to get bloods done early morning and take the levo in the morning. Maybe next time i will take it afterwards and see if there is a difference.

Yes when my GP printed out my results he pointed out the anti autoimmune count. He offered to recommend i work reduced hours for a bit but there is no-one to cover for me at work and it is horrendously busy at the moment. I know if i did reduced hours i would be even more stressed trying to pack more work in to a shorter day.
I really wish my managers understood (or cared more like) that even though i look ok, i feel really dreadful.

Ah well, thanks again Yegods and Rockin. It helps to write about it and get support here.

Hey all! Sorry im a bit month late im two years post surgery for TT due to graves disease. Anyone else suffer with graves eye disease??

Hi surprise just bumping to see if those with graves return/more join. How are you getting on?

I have family members with graves and one whose eyes were affected by it, but that was many moons ago. I think it got corrected with a short course of meds and she doesn't have to take anything for that now (though she still needs glasses).

The thyroids gone but the eye disease is still here :( to be fair im kindda used to it now!

RIP Dr Gordon Skinner.

Dr Skinner, who had helped so many thyroid patients regain their health, died on Tuesday 26 November 2013 following a stroke.

There are posts on all the major thyroid forums with more details.

hi everyone I hope you are all as well as can be.
I have seen my endo and had my levo increased to 125mg. Tsh is 15.4 so still high.
she does not think my fatigue and general all over hurting is just hypothyroidism
shr thinks I have carpal tunnel, raynauds and probably another auto immune disease but my stupid gp won't refer me to a rheumatologist or orthopaedic doctor as he said that they can treat me via the surgery.
I now have trochanteric bursitis and mechanical back pain lumbar region starting physio next week.
I'm 33 and am constantly exhausted and have no quality of life, what should I do can I insist on a referral? seeing gp tomorrow so I want to go in armed! amanda x

Be aware that carpal tunnel syndrome is a symptom of under-treated hypothyroidism. If you look at the Thyroid UK website you’ll find a list of signs and symptoms. It might be worth printing it off and ticking the relevant boxes. With a TSH at that level, you can expect to be heavily symptomatic and maybe your endo should be looking at whether you are actually converting the levo you are taking. IN the meantime though, you probably don’t need another referral, you just need your endo and your GP between them to treat you properly.

thanks Rockin.
got back to a letter from endo and I have a severe vitamin d deficiency how much more!
got physio on 3rd for trochanteric bursitis.
so it's probably best to just stick with endo and gp just wish my gp was nicer he originally told me it was all in my head

Rockin just found out about this yesterday and was devastated I only saw him 2 weeks ago for the first time and he was such a lovely man he was someone who just totally understood the illness and he was convinced he could help with my medication and was appalled that I was ignored by hospital specialists. I could not sleep last night because of the awful news, he tried to help those whom the NHS had let down and suffered the wrath of the GMC, he was one of a kind and the world is a much sadder place for his passing.

Does anyone with hypothyroidism (hashi's) get pins and needles in feet and legs/burning feet and deep leg calf pain? Or is this something else?

Im not sure if it is the same thing, but I get numb feet and hands on waking sometimes. As I move them around I get pins and needles and the first few steps can be painful. Walking around for a bit doing Christmas shopping was horribly painful on the balls of my feet, but that's probably something different. (But having thicker skin build up in patches on the soles of the feet might be connected).

Thanks yegods. Shopping I find really difficult, get very tired and aching legs after a short time and end up going home. Feet get sore too, I use memory foam insoles in lots of my boots to help.

Another issue that has come back for me is a stiff and painful shoulder. Worse in the mornings such that I can't brush my hair or clean my teeth with that hand. It's been like this for over a fortnight now. Each day I do stretches and move my arm and use a wall ans my weight to gently releave the tension until I've got almost full movwment at the end of the day. Then in tge mirning it is just as bad again.

I have peripheral neuropathy from having had chemo. It's a numbness in the toes, but is also painful. I now mostly wear flat shoes. I'm also hypothyroid, but had never thought of that as a contributing factor.