Thank you to everyone who replied to "My thyroid story"

Thanks everyone for your welcome replies. I do really need to get another appointment as I've just discovered that sleep apnea is linked to hypothroidism as well! I have been snoring badly for months & my husband has to nudge me as I sometimes stop breathing in my sleep. I did see a E.N.T. specialist recently & had a camera threaded up my nose & down my throat & some pictures showed abnormal soft tissue swelling at the back of my throat. The specialist did want to do a biopsy but I refused as I can't face a general anesthetic just now.......feel ill enough without more stress! The specialist had told me rudely to loose weight to rectify my snoring & acid reflux so I lost faith in her as I'm a size 14 & cannot lose weight even by starving myself & forcing myself to walk for miles each day!

Does anyone know if Dr Skinner is still available for appointments? Or does anyone know of a good endo in the South? All the doctors/specialists I see are barking up the wrong tree & talk down to me.........I'm not stupid, just ill like a lot of you. We all know what our problem is but mention thyroid issues to doctors & it's all cloak & daggers!

Thanks again everyone x

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  • If you email louise.warvill@thyroiduk.org and ask for a copy of the NHS Endos/private doctors.

    No wonder many lose faith in doctors when all they comment about your weight and a size 14 at that. I don't think they know much at all about thyroid and nil about clinical symptoms.

  • Oh my favourite story.... I also suffer from snoring and apnea type of symptoms ... I went to ENT specialist and all were clear but he arranged me to have sleep study which is in middle of next month. I asked him if my enlarged thgyroid is the culprit and he said NO ! In the mean time I had my thyroid moved last Monday due to several nodules largest being 3 cm plus 7 others. I already had my right thyroid removed many years ago due to the same problem ..so now I am thyroidless. And guess what ..I don't snore anymore. My husband said that for 1st time in 4 years I breath normally and haven't had one single snore. I will go to this sleep study in 2 weeks time , in fact can't wait for the results as it records your snoring , the loudness of it , oxygene intake and restlessness . You don't realise how important a good sleep is and how disturping this gasping for air and being woken up by your own breathing is and of course your poor partner/husband can't be feeling very good either ..mine is so guilty because he hates to tap my shoulder every night to get me to change sides for better position . Keep us posted and I will too :o)

  • Another here that's despite a thyroidectomy had problems for years with sleep apnoea and breathing issues - i was certainly waking up regularly in the night fighting for breath.

    Judging by what's now written on sleep apnoea issues like these may longer term play quite a significant part in tiredness and the development of chronic health problems.

    That's not to say that an enlarged thyroid isn't also depending on the shape/location of lumps etc a significant factor in restricting breathing too - but my breathing, gut function, muscle/tissue tone, strength and general physical stamina all noticeably improved following tuning of my replacement in recent times by increasing the proprtion of T3.

    This was despite my not having been markedly hypothyroid in terms of the usual gross symptoms (certainly not so that your average doctor would notice) - just knowing that my energy and wellbeing were still lacking, and that all wasn't right.

    Luckily a new endo is proving more progressive and responsive - and was prepared to trial the increased proportion of T3.

    T3 isn't necessarily some sort of magic cure (as in take more and you are sure to improve/all symptoms are sure to disappear) - but like quite a few issues my breathing has only seemed to really start to improve as the replacement has became quite highly optimised.

    That's despite the stock blood tests being 'normal' for years.

    Even with this improvement I still for example need a couple of hours more sleep a night compared to my wife, and doubt i've stopped snoring completely - but it's helped a lot.

    Here's one for the pot. My guess is that even quite mildly sub optimal (in terms of the classic hypothyroid symptoms/detectability by the blood tests) replacement/availability of thyroid hormone has significant effects on tissue and muscle tone, and that any disimprovement in these can lead to significant breathing and gut function issues.

    An increased tendency to chronic inflammation ( = restricted breathing) and mild infections in the sinuses and air passages may be factors in this too. Extra weight and age can't help either.

    I guess what I'm saying is that (a) even for those of us that are nominally not doing too badly there may be still be significant health and well being improvements to be had through the fine tuning of our replacement beyond what's normally seen as necessary, and (b) that sleep apnoea (it's said to result from loss of tissue tone) may largely be another manifestation of sub clinical hypothyroidism that gets fingered by medicine as a separate condition.

    The problem in responding to this is that right now (given the state of testing/the approximate understanding of thryoid and metabolic health) is that it can really only be done in response to symptoms, and likely with the assistance of a doc prepared to be guided by symptoms and patient input ...

    ian

  • I recognise a lot in what you say , Ian.

    I had a sleep study done a few months ago and apart from one instance of low oxygen was pronounced clear. This study was as a result of low hormones, which when supplememented, did worsen sleep disturbance.

    Further, is the issue of low bone density which is creeping in on the spine now.

    I'm trialling Levo now and not sure it's the solution by itself, either..

    Another factor is cortisol status , prior to treating UAT as warned by Dr D-P not to neglect this factor. Did you ever have your Cortisol checked?

    All these hormonal links are critical -and what is being neglected by so called Endo's who are just Diabetic specialists- in the main.

    No wonder we all struggle. I hope the tide will turn, soon.

  • I'm not sure on the cortisol T.

    I was worked up a couple of times over the years for the major (and pretty gross) adrenal conditions and pronounced clear. I was quite ill in 2005 with high blood pressure - which may well have been low thyroid related. They belatedly found a thyroid cancer and a hugely enlarged thyroid caused by auto immune disease so a TT followed.

    Quite recently (and at a similar time to upping the proportion of T3 taken) I started course of Nutri Adrenal Extra - and did notice some nice additional buzz/bounce in the first week or so.

    I've never been saliva tested or similar. i.e. been tested for the subtleties of adrenal function. It's very possible there are some issues, in that there's always been a tendency to low blood sugar/hypoglycaemic issues on exercise - which it seems may suggest adrenal issues (?) and seem to have disappeared with the NAE and the higher proportion of T3.

    There's also some possibility that i have a spleenunculus (re-growth of spleen tissue) on an adrenal gland - the spleen was originally removed after an accident in my teens. They found something when i was in hospital and (after a couple of months of deliberating as to whether or not i had a kidney tumour) put it down to that, but were not very specific.

    It's probably not good practice, but trying the NAE seemed a more direct route than going through the circus of getting tested - it's not so easy to get done over here.

    ian

  • It amazes me you've been through all that and not had an adrenal function test!

    Even if you had one & not been told - you should have been.You have quite a story!

    There are 3 tests available for this that I know of- Blood, with a challenge to adrenal the night before or sometimes less, a 24 hour urine test [not sure- but I think that can include a challenge too & a saliva test [inc.DHEA] which is listed on tests on this site from Dr Myhill.[search if needed- well known] (UK)

    My local private screening facility [BMI] have quoted me £76 for 24hr test- but that may not include consultant fees etc, if needed.

    I've already had some tests done, so am 'on board' with them.

    My feeling is, generally, it's not good policy to supplement with any hormone longer term without tests -and that inclodes [the pro-hormone] Vit D!

  • Don't get me started Tegz. :)

    It only came out by accident a month later that they had decided that I didn't after all have a kidney cancer. That was after they lost me for two weeks when they changed the junior doctor rota - i wasn't in the main endocrinologicial ward.

    I kicked up, and the new consultant (who surfaced a week later) couldn't figure why they were keeping me in. So he sent me home to come back in a month or so for the partial thyroidectomy. (i subsequently had a completion thyroidectomy based on the results of the first)

    I've asked endos several times about the saliva test for adrenal function, but the stock refrain has been that it's not reliable and is hard to interpret. (i.e. it requires some grey cells)

    I do agree that testing is advisable, but sometimes the logistics and the cost become too much. I certainly won't be continuing the NAE beyond the pack/course, and will be watching carefully to see what if any effect is noticeable when i phase them out.

    Between that and the 15 years of being told my thryoid was 'normal' while my health and career collapsed in front of my GP (and a couple more docs - the GP to this day and despite the cancer and the pathology finding gross enlargement and advanced auto immune disease still won't admit i had a longstanding thyroid issues) I don't have much faith in medicine or the system.

    Added to that is the reality that stuff like follow up blood testing (for the marker for the thyroid cancer), suppression of TSH and control of (never mind trouble shooting of the cause of) a tendency to high blood pressure have all been allowed by the system to fall between the cracks.

    I've ended up in a place of radical scepticism. These days i do what i can to keep myself feeling well, and do enage with the system from time to time as needed for prescriptions and stuff - but in truth would rather take my chances as a result of staying at arms length from it than end up entangled in it again.

    There's a gazillion reasons why I could/should have gone to law or otherwise tackled the system as a result of the above, but it'd just turn into a lifetime cause and there's other stuff i'd rather put my time into.

    It's the sort of scenario that dumps the average impartial observer who hasn't been there into terminal congnitive dissonance. They inevitably conclude you are a nut job because what you have to say couldn't possible be true. They can't cope with the possibility that it actually might be.....

    It's not by accident that i'm a firm supporter of patients never relinquishing responsibility for themselves - and doing as much study and private testing as can reasonably managed in parallel ..

    ian

  • Maybe the saliva test is less certain than the Syncathen test, that I know the NHS do, as another GP in my surgery mentioned it.

    After a TT you presumably have a steadier time on meds now?

    I agree with you about staying alert, btw.

    I think Docs find hormones difficult as they mix 'n match in the blood and have many x-connections thereby. The NHS seems unable to allow the GPs any leeway on local treatments, which in the case of thyroid are always likely to be less than straightforward, though not as mismanaged as your case seems to have been.

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