thyroid misery

embee

Yeah, the medication I got for the MS carries slightly increased risk of melanomas, thyroid issues (hyper/hypo and cancer) and cervical cancer. It was just an incidental finding from my brain and spine MRI, was visible on that. I can't feel any lump when I feel my neck, voice a little croaky but other than that I am not having any issues with it. Am having a thyroid function test on the 21st of August, Will just be added to my monthly bloods which are FBC, LFT and U&E. Presumably if the thyroid function test comes back askew they'll get the ultrasound done a bit quicker. They said they'd schedule me in for an ultrasound, got a letter from Beaumont today but it was just the date for my next MS MRI on July next year. Am just gonna assume it's benign, no point worrying myself yet!

hadenoughofit

Hi embee. As before I'm not medical, and can only report from personal experience and reading. This is all a bit rushed.

That said it seems nodules as you say statistically may not to be something to worry about unless somebody puts hard data on the table that suggests otherwise. It seems that many are benign.

Good luck with it all.

On your thyroid test. Nodules may not (at least initially) mess with thyroid function it seems.

Should it turn out that you are hypo some other possible causes of primary hypothyroidism (low thyroid output) seem to be (a) deficiencies in key vitamins and minerals eg copper, selenium, vits B and D etc, classically the result of a deficient diet (increasingly possible these days I suspect with farmed produce grown on over fertilised and tired soils), or reportedly the result of poor absorbtion in a gut struggling with inflammation, food allergies or auto immune bothers.

The thyroid support sites tend to have pages on this topic.

Or (b) destruction of significant part of the thyroid by auto immune attack (there's a few varieties, but eg Hashimotos disease) - which it seems may also result in nodules. Somehow it seems that the thyroid may often be targeted in error by the immune system if there are especially chronic immune disturbances elsewhere in the body

This sort of auto immune attack (and other factors) it seems can also result in an overactive thyroid. Hyperthyroidism, or excess thryoid hormone output.

Another (c) again reportedly is low output from the adrenals - because the thryoid seemingly needs cortisol and perhaps other adrenal hormones to function properly. The brain seemingly needs some adrenal hormone about to use thyroid hormone too, as do most other organs. Low adrenal output is sometimes called adrenal exhaustion (lots of books out there on this topic, as it's only fairly recently come to wide attention) because it may be a sort of end stage after perhaps long term stress.

Secondary hypothyroidism as reported from reading/personal experience above is a different matter. In that case we produce potentially enough thyroid hormone (the stock T4/TSH tests tend to come up nagative), but we are unable to use it properly for various rather blurry and seemingly not generally well understood reasons. Auto immune issues and toxins like metals get muttered about, but pretty vaguely. Which may explain why there don't seem to be reliable tests available for it.



It's not seemingly anything to do with your situation embee, and this is more strictly non medical reporting of hearsay - but it seems worthwhile to keep on writing and put up some information from personal experience regarding sleep apnoea, and its potential role in causing chronically high cortisol, and the problems that condition can in turn cause as mentioned above.

Quite a few with thyroid and fatigue troubles may tend towards sleep apnoea, it's a very common condition. Especially if we're heavily built, and getting on in years.

I've recently discovered from personal experience/been advised by a sleep specialist that sleep apnoea (especially if frequent) can result in our running very high levels of cortisol (stress hormone), especially at night. This reportedly as a result of our repeatedly stopping breathing, and having it restarted by a jolt of cortisol resulting from a bodily reflex which responds to low blood oxygen.

This as before in very broad brush and far from comprehensive terms seemingly messes with how thyroid and other hormones are used in the body, and may knock on into (in addition to basic loss of sleep caused by the apnoeas) various fatigue like conditions, concentration problems, cause a truncated form of digestion which outputs far more sugar than normal and can lead to irritated gut and eventually auto immune problems, mess with our sugar metabolism (tending towards glucose intolerance and eventually diabetes), raise and causes drug resistant unstable blood pressure (eventually cardiovascular issues) and lots more.

This is really only to put sleep apnoea on the table (it's a fairly complex topic in itself, even more so to try to understand the effects of running chronically high cortisol - but there's lots out there on it now if you do some googling) as a potentially signficant player in the complex of conditions so many are running now which include hypothyroidism, auto immune issues and chronic fatigue.

It's definitely worth considering as a cause of potential problems in these sorts of areas - and potentially more.

My own experience is that starting the standard CPAP treatment for sleep apnoea (which in many cases almost eliminates it) can have almost miraculous effects in terms of improved energy and well being. More to the point it seems likely that the consequent reduction in cortisol levels could help greatly in at least some thyroid and auto immune situations.

It's worth reading up a little to gain a basic idea of what it's about, because again in my experience (while sleep specialists are very aware of the possibilities for sleep apnoea to knock on into other health issues) other consultants and doctors given their often pretty narrow focus don't necessarily make this connection.

There are diseases associated with running extremely high cortisol levels, but part of the difficulty is that our cortisol output is hugely variable in response to stress - so most endocronolgists seemingly don't take much notice of blood cortisol levels unless they are pretty stratospheric...

embee

Have had sleep studies done, but I definitely don't have sleep apnoea. My crushing fatigue has been down to the MS and also chronic anaemia. Haemoglobin dropped down to 7.0 g/dl which is around the transfusion line. I had instead iron infusions and a procedure to lighten menorrhagia. Sleep studies were done when I had an enormous relapse in 2015. Was sleeping a lot as my body was shutting down and when I was awake I was unbelievably tired. No apnoea noted, but do have physiological bradycardia when I'm asleep, heart rate drops to approximately 30bpm. Breathing slows way down to perhaps 10 breaths a minute. Had an ECG done but once I was awake, heart rate returned to around 50bpm and respirations increased. My fatigue is there all the time and has only appeared in my life since the MS diagnosis four years ago. I don't think thats the answer to this riddle. I do wonder though if my idiotic immune system has decided to attack the thyroid instead as its forgotten to attack the brain, optic nerves and spinal cord thanks to the medication I had.

cltt97

Folks, just a quick question - beside Thybon what other T3 only medications available in Ireland are you aware of, and how much do they cost?

Thybon only comes as 20mcg tablet and I was looking for a smaller dose one. Liothyronine can be ordered from the US, but at a cost 5 times of Thybon!!!

hadenoughofit

The apnoea was just a thought embee, thinking of other potential readers too.

I'll keep on writing in the hope that somebody may find it useful. Pardon the length again.

I don't really know, but on the face of it a low pulse rate while sleeping would also seem to suggest that the sort of high night time cortisol levels that can be caused by apnoeas are unlikely.

It's not much used now by the medics, perhaps because it's not 100% definitive (there are some other conditions that can cause the same effect), it requires a bit of patient cop on and maybe because it's not so easy to charge for - but one of the best indicators of potential hypothyroidism is to measure what is called basal body temperature.

Unlike the blood test it will pick up secondary hypothyroidism too since it's essentially predicated on the fact that if your metabolism is consequently slow your resting body temperature drops by a few degrees. It was one of the earliest clear indicators in my own case that I was severely hypothyroid - the problem was that I had secondary hypothyroidism (see above) so the stock blood tests the medics insisted on repeatedly running kept on coming up negative.

That I was a walking talking example showing all the classic symptoms of hypothyroidism who after a few years was also pointing out correctly what was wrong (as the eventual pathology report after the thyroidectomy proved) counted for nothing. For 15 bloody years...

The BBT test requires using a thermometer to take your temperature upon waking in the morning before you move much or get up. A quick google of the thyroid support sites should bring up a how to. If not it's definitely described along with the classic hypothyroid symptoms in the book 'Hypothyroidism: The Unsuspected Illness' by Broda O. Barnes. His information came from research done post WW2 as a US military medic, and was the first to bring attention to the fact that hypothyroidism despite then waffle about it being a third world disease is actually very common. It's still a hugely important book because it sets the basics out so well.

Thinking about your MS emebee.

One of the classic routes by which auto immune disturbances reportedly get kicked off is through diet.

One telling of the classic story (which mainstream medicine may or may not for whatever reason fully buy into - but which personal experience suggests is pretty accurate) is that the chronically high levels of blood cortisol caused by stress (which can be down to stuff like overworking, insecurity, worry, being under pressure (often from the self) to deliver impossible results, running around like a mad thing being busy busy all the time, or by unpleasant work or home circumstances) and if present sleep apnoea (or indeed other stressors) causes us to run a truncated form of digestion which in nature is meant only for very short term use in fight or flight situations.

In this situation we don't absorb minerals and other nutrients properly (predisposing us to hypothyroidism and other consequences if this continues long term), and we somehow alter the digestive process to output lots of sugars to the blood for immediately availability of energy. Other stuff happens too like alterations to the distribution of blood.

When this situation is chronic (more or less continuous/long term) our gut suffers. Inflammation can reportedly set in, and after time the gut wall becomes somewhat porous and leaks foodstuffs etc into the blood which the immune system sees as a threat. The immune system after a time becomes chronically over stimulated, and likely to attack anything. Other organs like the liver which has to clean up also struggle - especially if hypothyroidism is present at the same time. (hypothyroidism given the central metabolic regulatory role of thryoid hormone affects all bodily functions and organs)

Routinely elevated blood sugar levels (especially if the diet is also sugar heavy) may predispose to glucose intolerance and even diabetes.

We can at this stage it says often become sensitised to certain foods, and develop food allergies. This in modern times of high gluten, high pesticide/agri chemical residue, high sugar, high additive diets (if we eat factory produced foods, especially lots of bread and carbohydrates) means that wheat, breads, and additive containing foods can become a problem. Milk, sugar, and almost anything else can also pop up on the list. The mainstream medical testing for food sensitivities I was sold was a waste of time years ago when I was in this space, but maybe it's improved.

Classic symptoms at this point on top of possibly fatigue, aches, general malaise can be stuff like an irregular gut (alternating constipation and diarrohea, mucus etc), and a bloaty and often queasy feeling. Also odd cravings, feeling hungry and full when not expected etc.

The problem (again repeating one telling of the story) if this continues seems to be that it can knock on into the immune system attacking whatever part of the body (literally, the severity of the consequences and of any resulting 'disease' depends quite a bit on what gets attacked), although the thyroid for some reason commonly gets targeted. It can seemingly go on to develop into conditions like MS or any of the other auto immune driven diseases.

Once this gets going there's more permanent damage that can get done, and it's tough to restore balance.

As an aside - it's becoming increasingly clear on deeper investigation that most of the chronic disease conditions that eventually kill us originate with auto immune disturbances. We'll eventually perhaps gets the message that intensively farmed and processed foods, and filling our environment with chemical residues isn't a good isea...

You're probably well up to speed on this embee, but my own experience (my guts were in bits in the 90s, I came close to developing lupus in that some of the diagnostic tests for it were positive but not all - but luckily i didn't get any of the biggies) was that taking control of my diet was key.

Wheat (especially volume produced breads, beers and similar) and an unidentified likely additive found in many processed foods turned out to be critical in my case. Perhaps because of the gluten, but very possibly also because of other doped proteins and pesticide residues. Sugar and milk were bad news too. I basically eliminated anything suspect (identified by carefully testing foods and seeing how the body reacted to them/how I felt afterwards) from my diet, and tend to eat mostly some meat, lots of veg, and moderate amounts of rice and potatoes as I need some carbohydrate.

I avoid processed foods like the plague.

This with lots of meditation, mindwork and lifestyle changes to calm things down produced a pretty amazing improvement. For some years prior to my thyroid finally crashing due to prolonged autoimmune attack it actually staved off the worst of the symptoms. (the other big breakthrough for me was eventually finding an endocrinolgist prepared to prescribe T3 thyroid hormone after the thyroidecomy - my system struggled to use the usual T4)

It's probably not news for you, and it's not necessarily central in your situation either. There's stories about however of people heading off down this sort of admittedly fairly difficult road and managing to reverse all sorts of auto immune based conditions - including Hasimoto's disease.

My personal experience at this stage suggests that it's likely that gut issues of this broad sort possibly are implicated in lots of these conditions, and that getting control of what we eat is an important step towards recovering if not total health of at least calming things down...

hadenoughofit

Thybon is the only T3 I've found in recent times citt - since it was de-listed by the HSE or whoever.

What's available seems to be down to the vagaries of the importers.

The price is insane in Ireland, a pack that's costing me close to €40 here from a discount pharmacy costs about €5 in Milan.

Don't ask me why T3 was de-listed - it was done just as it was coming into its own as the answer for those with problems converting T4.

On the other hand I know exactly why. It was about cost. They stopped allowing GPs to ask for the T3 blood tests at the same time - which means that if you want a prescription you have to go to an endocrinologist.

cltt97

Many thanks for that hadenoughofit - I did read that the NHS in the UK did the same, they released a some of weird statement that it was not needed... I'll stick with the Thybon so, quartering and halving....
I've given up long ago on GPs and blood tests, I'll go straight to private lab and they sent the FT3 test to the UK. My condition has been managed by endocrinologists for the last 10 years.

hadenoughofit

I'm managed by an endocrinologiest too citt - for background screening given the previous thyroid cancer and also for prescriptions.

I was lucky to fall in with a very decent gent. He's pretty open to more progressive/reality based thinking, and knows me well by now so he'll trust a bit - as long as it doesn't go right into the middle of territory that would cause serious exposure with the powers that be.

He tests my T3 using the hopsital lab (think its a bit of a moving target though given the short half life), but he's definitely more interested in my TSH.

He gets nervous if it gets down to the very low numbers I feel best on, but if I let it up to what the system calls normal I start developing hypo symptoms. My dose is pretty low at that anyway for my bodyweight.

Think there's something a bit compromised about my system in this regard, I was born very premature and it's seemingly not uncommon for this to result in issues with some of the subtle enzyme based thyroid metabolic control systems etc.

OutOfMyMind18

Hi All,
Just came across this thread and thought I would post.
I really am convinced I have an underactive thyroid. All the tests come back as "normal" and they look within the normal range. But all my symptoms point to it. I literally have them all. My GP is great and listened and even said it does sound like it. But the problem is, it fluctuates. I have two months of feeling like absolute hell then two months of being fine.
Initially, I thought it was anxiety and depression but coupled with dry hair (which is also falling out) and skin (and this coming from someone who usually has enough oil on my skin and hair to fill bottles), lack of appetite, feeling the cold, high cholesterol (for someone under 35 my cholesterol is 6.9) feeling down, always tired (I wake up tired), constant constipation (TMI, I know), forgetfulness/brain fog, constant sore throats, and last but not least woman problems. I have never ever had that issue. I use to able to time it down to the minute and now it's just mad. A sore throat and feeling down annoys the life out of me and just makes me feel down even more.
I don't know what else to do. GP doesn't see a problem so no referral.
I'm not sure where to go from here! Any pointers at all would be great even recommend a doctor who will just go a step further. Don't get me wrong my GP is great but something has to give.

LirW

Good morning, I went to the GP today and gave blood for a full blood screening plus thyroid.
Now it's the waiting game and to be honest I feel miserable. GP said she's going to call me if levels are out of the ordinary but it could take up to two weeks to get results back.
I'm just incredibly nervous.

I feel like sh1t in general, I'm knackered, now I lost my appetite in the last two weeks and it's all stressing me out so much.

hadenoughofit

Hi OOM.

First as usual i'm not a doctor, and am just repeating what my experience has been - plus what seems to make sense from a lot of reading.

This skim-repeats and adds a bit to what I've posted more extensively on before, it may be worth your ploughing through the last couple pages.

The stock thyroid test as probably before typically checks blood for one or possibly two variants of T4 and also TSH levels. T4 is one of the thyroid hormones output by the thyroid. TSH is the hormone that signals to the body to increase or decrease thyroid hormone availability. It increases in levels when we're low on thyroid hormone (are hypothyroid), and reduces when we have too much. (are hyperthyroid)

The first basic is that while it's a bloody good indication it's hard to be 100% certain from symptoms exactly what's going on. Hyperthyroidsim (too much hormone - although the test would likely have picked that up since it's caused by excessive hormone output) can cause quite similar symptoms to hypothyroidism.

Other hormonal imbalances can cause problems too, and these can interact. Somebody put up this very basic table of symptoms for some of the various hormonal conditions on the Thyroid UK support forum: https://healthunlocked.com/thyroiduk/posts/138702239/hormone-imbalance-symptom-charts?uid=679736af-a324-42b3-bdbc-41ff01a2effe&utm_campaign=thyroiduk&utm_medium=email&utm_source=notification&utm_term=weekly+digest

I've described my own experience above - that years of stock thyroid testing came up as normal because I was suffering from secondary hypothyroidism, and that I could not despite even providing literature to back up the suggestion of what the problem was get medicine to take seriously my symptoms.

The issue as before with secondary hypo is that it's not possible to use the very likely adequate supply of hormone your thyroid is producing because of problems in the subsequent steps where the hormone is converted to the active T3 form and used in the cells.

The problems with treating secondary hypothyroidism are that (a) the stock thyroid blood test doesn't detect it, and (b) mainstream medicine doesn't seem to have tests available to reliably detect secondary hypothyroidism.

I'd as before strongly recommend getting stuck in and reading up some of the good thyroid support sites on the web. They can have a slightly strident tone, but are important sources of information. Be careful of posts on forums by individuals, reading over a long period sees consistencies emerge, but they for obvious reasons can't be taken as gospel.

IF the problem is secondary hypothyroidism it can as in my case (when we're not converting T4 to the required T3 very well) sometimes be overcome by prescribing the T3 variant of thyroid hormone, although the medical system isn't it seems keen to go this route for cost and complexity reasons. Doctors are reluctant to do it, but a trial of a low dose of T3 is one way of determining if it's likely to help.

While there can be other causes of reduced temperature, secondary hypothyroidism can be inferred using the basal body temperature test. If our resting temperature (taken immediately upon waking) is down by at least the minimum required amount (the test should come up if googled, but there's a book named in my post above which describes the procedure) it's a fairly strong indicator of hypothyroidism - whether primary (the thyroid for dietary deficiency or other reasons is not producing enough hormone) or secondary.

Most secondary hypothyroidism seems ultimately to be associated with lifestyle and ecological issues.

Stress and overdoing it (causes high cortisol - see the post(s) above) messes with gut function, and may eventually as a result of inflammation lead to poor vitamin and mineral uptake. The resulting irritation of the gut lining may lead to sensitisation to various foodstuffs (wheat, gluten, pesticide residues and additive loaded processed foods seem for farily obvious reasons to be high on the list, but almost anything can cause bother) - leading to auto immune disturbances. The immune system can attack the thyroid itself (Hashimotos disease is one form of auto immune thyroid desease), and seems also somehow to be able to interfere with use of the hormone. (to trigger secondary hypothyroidism?)

More serious immune diseases can follow if the undelying situation is not addressed.

Again IF, but if the problem is secondary hypothyroidism with immune involvements (which seems to be increasingly common these days) it's important to try to nip it in the bud before it progresses to the point where damage to the thyroid and other organs becomes an issue.

One of the problems from my own experience is that the available tests for auto immune disturbances may not to be reliable. My suspicion is that they only come up positive in the case of advanced disease. There's not much interest from mainstream medicine in engaging in more holistic situations either, but the good news is that most of the means of responding to these conditions are largely in our own hands.

They require considerable committment, work and self responsibility to carry through...

Against that the involvement of a prefereably sympathetic and co-operative doctor, immunologist or endocrinologist is essential - for testing, and for trained input.

Measures that helped me greatly were getting stuck in to read up the topic so that I became at least an active partner in my medical affairs, lifestyle changes (no more overwork, lots of rest, get out of stressful situations), meditation to calm the mind, a squeaky clean elimination diet to find out what was causing problems and to calm the immune system, and lots of vitamin and mineral supplementation.

IF the problem is secondary hypothyroidism then low vit D but also others are pretty common. Vit D is central to regulation of the immune system, and there's strong suggestions about that while far too much can cause problems that the RDA is perhaps much too low.

The above may be irrelevant in that your situation could be different, but it's not these days an uncommon scenario. Either way get reading - if you're not feeling well it's time to act.

Hope it helps, and good luck...

embee

Had thyroid function test yesterday. GP called me today to say my thyroid is overactive. Said I needed the ultrasound on the thyroid nodule asap and has referred me for an urgent appointment with an endocrinologist. They're gonna start me on meds immediately, am a bit worried. He said that they may biopsy the nodule and I could potentially need a thyroidectomy... Seems a bit drastic? Surely meds will do the trick?

New Home

It depends on the type of nodule, and on how overactive the thyroid is. AFAIK, the meds are only replacing the hormones you're NOT producing, but you're already producing too many, so the meds would be counterproductive. For hyperthyroidism, if they decide to operate, they may remove only part of the thyroid, which would bring your hormone levels down without the need to have them replaced completely by tablets.

Hope all goes well.

hadenoughofit

Hi embee. I happened to be at the computer as the site's message that there was new post on the thread came through.

That's a bit of a bummer, but I guess it'd perhaps be worse if you were unwell and nothing could be found.

The usual cautions regarding my not being a doctor and that I'm reporting reading and hearsay apply.

It's as before regarded as sometimes being difficult to distinguish between hyperthyroidism and hypothroidism on the basis of how we feel, but the blood test I guess will have definitively shown that your thyroid is overactive. (it's one situation where the stock thyroid blood tests deliver a clear result)

So regardless of the status of the nodule they will presumably want to treat the hyperthyroidism anyway. A little digging on some of the thyroid support sites will fill in some details of why this might be the case.

Hyperthyroidism isn't really my space, but so far as I know what happens given a finding of hyperthyroidism depends on the level of overactivity. My recollection is that it's up to a point treated with a drug which partly blocks the action of the hormone. If it's severe enough (or perhaps goes on for long enough - i don't know what the criteria are) they as before may seek to reduce the output of the thyroid - using radioactive iodine, or by surgically removing a bit of it.

The nodule in essence is probably a somewhat separate matter. It was identified (i think?) in your previous scan, which unless it was very minimal probably means they need to investigate/screen it just in case. A biopsy is normally the definitive test which determines whether the nodule is benign - statistically/generally much more likely than not.

I don't know the criteria that lead to a decision to run with a biopsy, but either way as before it probably doesn't necessarily mean there's a problem with the nodule, only that they decided that they definitely needed to check it out.

The ultrasound scan could be to take a closer look at the nodule, but if i remember mine correctly ultrasound is also used to locate exactly where the nodule is so that the neeedle biopsy takes cells from it/the right part of it.

Once you are in this territory (nodule + overactivity likely caused by auto immune attack on the thyroid) then a thyroidectomy or a partial thyroidectomy becomes at least a statistical possibility. Suppose a bit hangs on what the doc was trying to communicate when he mentioned it...

Either way the GP will i imagine as you say want to haul in an endocrinolgist/specialist, but that again doesn't necessarily mean a whole heap other than that he wants somebody more expert to take a look at the situation.

It's a bit of a sobering thought, but a thyroidectomy (if it came to that) isn't the end of the world. Many (including myself) with auto immune thyroid disease report only starting to feel right after one. One rationale for this (don't know if it's true) is that if the thyroid has been badly beaten up by the immune system it starts to of itself function as a centre for auto immune disturbance and all that implies.

So that it ends up (the argument goes) that removal of the thyroid (which tends not to be done until it's the last resort, i've seen some argue that it'd be better if it was done sooner - there are no doubt again specific criteria used to decide when this point has been reached) clears the way presuming no other major issues in play for improved stability of the immune system.

Good luck with the next steps . Don't forget the importance of cleaning up diet, lifestyle and supplementation to calm the immune system, it's likely well worth reading up the topic and if it makes sense to you committing to making the necessary changes...

embee

Thanks, that's a very helpful post.

On the nodule, it was an incidental finding from the brain and whole spine MRI with contrast which I have regularly for the MS. The nodule wasn't there on the previous MRI six months prior, no idea of it's size but can't imagine it's particularly minimal if they want to investigate it. Can't feel any lumps but then not fully sure what I'm
supposed to be feeling for. My resting heart rate is ordinarily between 55 and 70bpm, goes very low to 30-35bpm when I'm asleep. Checked pulse regularly today and it is persistently between 90 and 110. At times feel it pounding away in my chest, not usual for me at all. Slight fluttery feeling too, also am very twitchy and restless. Feeling narky and anxious more than usual. Very, very hard to get to sleep and stay asleep, bladder feels like it is constantly full, weeing very frequently but only small amounts each time. I was reading about the thyroid on Google and subsequently read about a "thyroid storm" which sounds horrendous and freaked the crap out of me! Waiting to hear when ultrasound will be, was meant to be next Monday but it's my daughters first day of secondary school so my thyroid woes will have to be pushed to one side for that day at least. Child comes before everything!

hadenoughofit

Those symptoms (the raised pulse especially) sound pretty characteristic of what I've read about hyperthyroidism all right embee.
There are nodules that they don't biopsy, so there's enough there to have caught somebody's interest - but a quick skim just now threw up a figure suggesting that only about 10% are not benign.
A nodule can itself be the cause of hyperthyroidism too, so there's quite a few reasons why they may want to know a bit more about it. If nothing else the cultural climate these days is such that the system will want to play 100% safe - they won't want you surfacing with something they missed after the fact. Which should shift the probabilities in a favourable direction too.
It's always a bit scary reading about what the worst case possibilities might be, but there's so many (many not so big a deal) that it's definitely better without hard information not to get too hung up on any.
One not so nice aspect of thyroid is that it also often messes with our mind state - and can make thinks look darker than they necessarily are. It doesn't change much, but I found that just knowing that was the case and hence working to maintain a balanced outlook helped.
Have fun on Monday!!
Good I'd say to find things to focus on in the interval as you are doing, just don't do too much and get any more tired than you have to as may well tend to lower the mood.
Maybe stay as nice and light as you can manage, and look after yourself too...

Rosie1983

Hi all. I’m on Erfa Thyroid and it has become unavailable again. This happens every once in a while. My pharmacy has been waiting to hear back about when it will be in stock again. I’ve been taking Armour for about a week but I have had a few palpitations today and yesterday so I am eager to get back on to a Erfa asap! Does anyone know where in Dublin or Wicklow I can get Erfa? Hopefully there’s a pharmacy that has some in stock to tide me over... Thanks!

embee

Going to Beaumont in the morning for ultrasound scan and urgent appointment with a consultant endocrinologist. Thought it'd take months for an appointment, so I'm glad to be seen so quickly in the public system. my heart is flying all day and at times feels like its gonna burst out of my chest, so intense is the pounding. I've felt a few flutters in my chest too, hope whatever meds they put me on will work! They've said they may need to perform a biopsy, hopefully not though.

New Home

Hopefully they'll see the nodule properly without having to do the biopsy, but even if they did do it, at least you could get an almost certain answer as to what kind of nodule it was and if it was benign or not. It could very well be an innocuous cyst, too!

You don't have to answer, but I was wondering if you are pregnant or if you've had a pregnancy recently - hyperthyroidism (and nodules) can often (but not always) appear during a pregnancy. The nodule won't disappear on its own, but the hyperthyroidism often (not always) resolves itself afterwards.

embee

New Home wrote: »

Hopefully they'll see the nodule properly without having to do the biopsy, but even if they did do it, at least you could get an almost certain answer as to what kind of nodule it was and if it was benign or not. It could very well be an innocuous cyst, too!

You don't have to answer, but I was wondering if you are pregnant or if you've had a pregnancy recently - hyperthyroidism (and nodules) can often (but not always) appear during a pregnancy. The nodule won't disappear on its own, but the hyperthyroidism often (not always) resolves itself afterwards.

Hey,

Last time I was pregnant was June 2005 into February 2006! Never had issues with the thyroid at all throughout. My daughter is 12 and a half now and started secondary school on Monday. Deffo not pregnant now - had the shop shut with a mirena last year due to extremely heavy periods. The neurologist thought the nodule was a bit "suspicious" it hadn't been visible in any older MRIs. I've had eighteen brain and whole spine MRIs in the past four years, this is the first one that has shown a thyroid nodule. She did say it was likely to be nothing serious but I'm anxious now. Hope it all goes okay tomorrow, can't sleep thinking about it.

New Home

Ok, then it's not pregnancy-related.

Break a leg today, hope all goes well.

LirW

I got my blood results back: it is not thyroid but another issue. My body contains virtually no Iron, my levels are one of the worst they've ever seen even though I'd have a reasonable level of Iron in my diet. I had issues with it in the past but not as bad. Makes sense though with my other health issues. There'll be a therapy and a tight monitoring for it because it is likely that my body doesn't absorb it properly and this is making me feel so bad.

embee

Saw the endocrinologist, he wants me to have a scan next week using radioactive material or something? What's that all about? Said I have a very large module on the right and two smaller ones on the left. He said that medication would treat symptoms but that I might need a partial thyroidectomy... This talk of radioactive material is freaking me right out.

New Home

It's a contrast, it's to differentiate among the various types of tissue. Contrasts are used for lots of CT scans, MRIs, etc. (some can be done without, but it's like driving in thick fog). Also, after a thyroidectomy, people are usually treated with radioactive iodine (IIRC) to kill off any potential cancerous cells, because the iodine gets absorbed by the thyroid more so than by other tissues, so it's more precise in what it treats. Sorry, it probably sounds confusing.

hadenoughofit

Hi guys. As usual I'm not a doc, just reporting peronal experience and hearsay.

LirW. There are likely other factors and conditions that influence uptake of iron (think there's even inherited tendencies), and others that regardless of uptake may lead to low iron - but the sort of gut irritation that follows from lifestyle issues like food sensitivities, stress or other conditions causing high cortisol (stress hormone) and compromising digestion seems also to be frequently fingered as a cause of problems in taking up minerals and other key nutrients in the gut.

emebee. I can't help directly/am not sure what your endo may be about, but my personal experience back in 2005 was that mildly and only very short term radioactive (the radioactivity decays rapidly) iodine (?) may on occasion be used in a number of ways by endcrinologists in connection with thyroid matters.

Thyroid tissue needs a supply of iodine to work/takes iodine up from the blood, so if it's functioning it concentrates the radioactive iodine in itself. Which concentration will show up in a scan which detects the resulting low concentration of radioactivity.

If the iodine is not taken up as normal then this result presumably (I'm not sure - perhaps somebody else knows more, especially as it applies to hyerthyroidism ?) may suggest that the thyroid cells concerned are not working normally.

Radioactive iodine (surgical removal of part of the thyroid is another way this is achieved) is also pretty regularly used to kill off a proportion of the hormone producing cells in the thyroid to reduce its output in the case of hyperthyroidism. Most having had this procedure report needing to take replacement hormone to bring their levels back up to normal.

Depending on whose opinion you read there may be pros and cons as to which approach is used with hyperthyroidism, so it might if you are that way inclined make sense to so some reading and ask some more specific questions of your endocrinolgist.

Another use on occasion is for a full body scan.

When I was very ill and in hospital with sky high blood pressure (before the thyroidectomy), and there was the possibility that it was caused by a nasty like eg an adrenal or other thyroid tissue based tumour which could have spread from the large lump in my thyroid (my sky high cortisol suggested this possibility, although it subsequently turned out to be down to other issues) I had what at the time was called a scintigraphic full body (actually MIBG) radioactive iodine scan to test for this.

The logic being that since any such tumours which had spread would be thryoid based they would also concentrate up the radioactive iodine and be capable of detection.

Fortunately it turned out negative. I had only an encapsulated tumour in my largely demolished (by auto immune attack) thyroid, and it hadn't spread.

I wasn't very keen about the MIBG scan at the time since it involved radioactivity. There was an alternative form of scan just coming available at the time which might have reduced the dose, but it wasn't covered by my insurance. This may not be the case now, fancy scans have a tendency to become cheaper and more routinely used over time.

One other and more aggressive use I know of (there may be more) is after a full thyoidectomy for a thyroid cancer. Radioactive iodine is (was?) routinely used to nuke any remaining and potentially cancer containing shreds of thyroid tissue left in the area of the thyroid, or selsewhere in the body. If this situation arises it's if you are so inclined perhaps worth reading up on the pros and cons too, in that here were signs some years ago that the thinking on this topic (especially regarding risk vs benefit) was changing.

Sorry I can't help more, but I guess the bottom line from my experience is that mildly and short term radioactive iodine is used fairly routinely in differing sorts of thyroid related testing and treatments.

I was assured at the time that while it's regarded as bringing with it some very low level of risk, that it's thought of by those that claim to know as being minimal. These views evolve however, so it's (again) if you are so inclined and presuming the time is available never any harm to make sure to find out exactly what treatment is being proposed, and to then read up on the topic. Then to seek clear answers to any concerns arising from the proposing doctors..

Seanachai

Hi guys, I have add and I find it hard to read through long threads/posts, am I right in thinking that the basic gist is that T3 medication is what's needed for effective treatment, but that the HSE make it difficult to prescribe? Also that we need to go private to get any hope of decent care?

hadenoughofit

Hi S. The usual cautions apply - not a doctor, just reporting personal experience and hearsay, not giving any advice whatsoever, read and make your own mind up etc.

Metabolic syndromes (as the more complicated varieties of fatigue related conditions get called these days) are unfortunately often complicated territory which depending on the situation may involve an awful lot of variables - hence the length of most posts. I can't speak for others, but the aim from here is to try to very crudely map out some of the variables and considerations that proved to matter in my own case/paint big pictures/illustrate how the dots may join up rather than to post specific solutions.

To help move people towards a place from which they may be able to help themselves.

It's not really possible to set it out in words of one syallable unless your situation is a simple one like the stock 'take the pills and get on with it' primary hypothyroidism medicine tends to prefer to treat - or it's after the fact and the dust has settled a bit.

It's I guess life challenging us to take responsibility for ourselves...

T3 is often of crucial benefit it seems (it has been for me anyway) for those of us suffering from secondary hypothyroidism, but even for that it's not necessarily a fix on its own.

Those with primary hypothyroidism (where the gland for reasons like mineral deficiencies etc) is not producing hormone may do fine on T4 alone, or may also benefit from T3 depending on how they respond to T4/what's going on.

It's down to surmise what the motivation of the HSE regarding T3 is, but it seems likely that cost and administrative complication are in the mix.

Bearing in mind that the whole field of secondary hypothyroidism is not well understood by mainstream medicine, requires case by case trouble shooting, is minimally supported by reliable lab tests, is far more time and skill intensive than simple hypothyroidism, and requires far more trial and error and seriously committed patient co-operation on treatments and lifestyle changes than most like to admit.

It begs questions doctors don't have ready made answers to, which can knock on into difficult situations if patient expectation are not informed and realistic. Which is perhaps why many docs run the stock T4/TSH tests for primary hypothyroidism, but avoid engagement/attempting to treat secondary hypothyroidism.

T3 is quite a bit more volatile and fast acting than T4 too, so it's possible for the unwary to overdose/do harm to themselves with it. Blood testing may be of less use than with T4 because it metabolises/is used quickly/has such a short half life.

Going private could help, in that a public doc might be more tightly constrained in what he can do - but ultimately the game is to find the right doc. A skillful endo or similar who is familiar with recent more progressive and holistic thinking in the area, and who will within reason if trust gets established work with you is often a good plan.

The situation has improved a lot in recent years, but there's still those about that prefer to stick to the dogma and to avoid inconvenient realities standing in front of them. Cut up panicky, stroppy or difficult and it's for entirely understandable reasons pretty much a given that a doc will take cover behind stock protocols.

The problem in the end for doctors is that they are subject to best practice guidelines which in the interests of preventing the unwary walking patients into trouble block more creative appraoches which when required and skillfully applied can help - especially with secondaryhypothyroidism...

Amazingfun

I have been self treating for years and its still going great

Wyldwood

embee wrote: »

Saw the endocrinologist, he wants me to have a scan next week using radioactive material or something? What's that all about? Said I have a very large module on the right and two smaller ones on the left. He said that medication would treat symptoms but that I might need a partial thyroidectomy... This talk of radioactive material is freaking me right out.

I've had a radioactive iodine scan and it's no bother. I had the iodine in a drink form but I think there's also a tablet version. The drink's not the most pleasant but it's just a once off. They do a scan a bit later (can't remember how long as it's been quite a few years) and the iodine will have been absorbed by the thyroid making it easier to see the tissue. I also had a course of iodine in milk after a thyroidectomy, it was a disgusting drink.

There are no special precautions after the iodine uptake scan so don't be worried.

hadenoughofit

Hi AF. I can honestly say too that surgeries apart (which thyroid wise were in themselves the result of the system's failure to treat conditions when they were in their early stages) every major health breakthrough/reversal of fatigue and related problems I've had over the years has also been self driven. The result of intuition and careful reading of books and support sites suggesting a possibility which has turned out to be correct.

I'm convinced that we get help if we truly take responsibility for ourselves...

Doctors so far as thyroid is concerned are by now are mostly a means of access to background testing and screening, and prescriptions for hormone.

The bit that's a little frustrating is that my auto immune thyroid disease could probably have been stopped back in the early 90s and my thyroid saved if i got the right break then.

I spent many years telling (in writing no less) a succession of doctors and consultants that I was suffering from auto immune disease and secondary hypothyroidism - the possibility wasn't as widely understood back in the mid 90s, but it was clear by a few years in based on the symptoms that that was likely what the problem was.

Trouble is that they kept on running the standard T4/T3/TSH test for primary hypothyroidism which by definition was coming up negative (the blood value ranges regarded as normal back then were scarily wide and regarded my normal T4 and occasionally low T3 as normal - my thyroid was working fairly well, but due to downstream problems I couldn't properly convert and use the hormone it was producing) and telling me that I wasn't hypothyroid. Simultaneously pooing the material I was feeding them. All this despite my being a walking talking full house demonstration of pretty much all of the normal hypo symptoms.

Then suddenly when after of the order of 12 years of wrosening fatigue, struggle and loss of career I became extremely ill in 2005, lost my thryoid and the pathology report proved I had a thyroid cancer and advanced auto immune thyroid disease it was a 'so what' matter of routine acceptance that I had been suffering from these conditions. Even then I had despite obviously doing very badly on T4 replacement alone to push like crazy (get reports from thyroid friendly doctors in the UK etc) to eventually be trialled on T3.

Which in my case proved transformative, it was the start of a long road back which has entailed many further hurdles, breakthroughs and gradual improvements. (most recently the discovery that chonically high cortisol caused by severe sleep apnoea was an ongoing cause of gut and wider metabolic and immune disturbances)

It's scary the degree to which people only see what they want to see. The money and cost driven legalistic, deeply hierarchical and highly bureaucratic/don't make waves culture surrounding the whole deal causes enormous distortion of the patient relationship, and is at its worst when dealing with less than black and white conditions of this sort.

The reality is nothing like the caring sharing safety net the healthy taxpayer and funder of the system likes to imagine awaits them in the event of..

I'm not remotely anti-medicine, in that the professional is as much caught up in and poorly served by this system as the patient - and I most certainly would not be here without mainstream medical interventions.

The perhaps unpalatable reality is that much of this culture (beyond the contribution made by the behaviours within the system) is the result of our unrealistic expectations, our avoidance of inconvenient realities until we're personally in trouble (too late), and our (as ever) our typically tactit refusal to take responsibility for ourselves - which leaves control in the hands of these often deeply hierarchical and self interested bureaucracies.

It's so important to realise that thyroid is a walking between the raindrops deal - that there are times when progress requires rather more than blind trust in the system...