thyroid misery

Delaney101

Hi Folks

Has anybody any advice on herbs/suppliments/vitamins to improve mood for Hashimotos. I take 50mcg of eltroxin and I feel good but my moods are up and down

I have heard of two things that can help people who suffer with Hashimotos

(1) I have heard that a daily dose of selenium is good and that eating two brazil nuts / day can give a person the daily amount of selenium needed. I tried this recently and I did feel good but will need to take for longer

(2) I have recently heard of something called "Ashwagandha" or "Indian Ginseng"..has anybody tried this?

I appreciate any advice that can help. thanks!!

waxmoth

Ashwaghanda has been shown to have a normalizing effect on thyroid hormone levels so it may be advisable to consult a medical herbalist in conjunction with your prescribing doctor. https://www.liebertpub.com/doi/abs/10.1089/acm.2017.0183

Mzo1978

Delaney101 wrote: »

Hi Folks

Has anybody any advice on herbs/suppliments/vitamins to improve mood for Hashimotos. I take 50mcg of eltroxin and I feel good but my moods are up and down

I have heard of two things that can help people who suffer with Hashimotos

(1) I have heard that a daily dose of selenium is good and that eating two brazil nuts / day can give a person the daily amount of selenium needed. I tried this recently and I did feel good but will need to take for longer

(2) I have recently heard of something called "Ashwagandha" or "Indian Ginseng"..has anybody tried this?

I appreciate any advice that can help. thanks!!

I take my ndt in the morning an hour before food, I take a super 8 probiotic mid morning I take an iron tablet (b complex) selenium, vit d spray, I also take thyroid energygot it on I herb, cleared by Dr Wilson to take it, it contains Ashwagandha and also Maca and a few other things

gercoral

hi, i haven't been able to go through each page of comments and replies, but was wondering,

what were the symptoms of underactive thyroid for you all? are there symptoms that people may not be aware of?

Wyldwood

That's a 'how long is a piece of string' question. Everyone is different. If you read through these pages you will see the full gamut of symptoms people have suffered, alternatively, google Mary Shomon she is a thyroid advocate and has a wealth of information on her web pages.

Brian201888

Any particular GP's have a good reputation for managing hashimoto thyroiditis in the Dublin area?

elaney

Hi,
I just wanted to ask a question. I got blood work done recently at my doctors as I was feeling so tired constanly. My nurse rang me last Friday to say my tsh levels were 4.9. That I don't need to worry as it was borderline and they will test me again in three months. I asked her was the tiredness I was experiencing down to my thyroid but she said no I need to get more sleep. I had to laugh as I could sleep ten hours a night and still feel tired. I also have problems with my periods which are heavy and every three weeks. I've lost all interest in any activity the last year. I just felt she was fobbing me off. I just want to know is tsh 4.9 high . That's all the info she gave me. Sorry if this has been asked before.

jelly&icecream

elaney wrote: »

Hi,
I just wanted to ask a question. I got blood work done recently at my doctors as I was feeling so tired constanly. My nurse rang me last Friday to say my tsh levels were 4.9. That I don't need to worry as it was borderline and they will test me again in three months. I asked her was the tiredness I was experiencing down to my thyroid but she said no I need to get more sleep. I had to laugh as I could sleep ten hours a night and still feel tired. I also have problems with my periods which are heavy and every three weeks. I've lost all interest in any activity the last year. I just felt she was fobbing me off. I just want to know is tsh 4.9 high . That's all the info she gave me. Sorry if this has been asked before.

The symptoms you're describing are the definition of hypothyroid tbh. TSH of 4.9 is not normal and most people are symptomatic to some degree at that point. You'll have to push not to be fobbed off or get your results printed out and move to a better doctor. Join the thyroid Ireland facebook page and ask about a good GP in your area that is likely to be sympathetic to your needs. Or ask to be referred to a good endo (quality can vary a lot with them as well for thyroid issues). You should get ferriten, Vit B12 and other things checked in your bloods also. Did they check FT4, TPO antibodies etc as well?

Educate yourself on the condition and go back to your GP or a different more sympathetic one armed with that information. The very minimum they should do is start you on eltroxin.

Your TSH should be close to 1 and you should push for treatment that reduces it under 2.5 at the highest.

elaney

Thanks for getting back to me so quickly jelly &icecream.
I was given no more information just told tsh 4.9 not to worry we will do another test in 3 months. The thing that annoys me I've had these symptoms for the last eight months and they want me to wait another three. I wasn't expecting to be told about my thyroid so didn't know what to ask. Looking online I found alot of frustrated people with same tsh and not being treated. That's why I asked here if it's high. I will try to educate myself so I'll have more understanding for the next test. But not looking forward to next three months.

Mzo1978

elaney wrote: »

Thanks for getting back to me so quickly jelly &icecream.
I was given no more information just told tsh 4.9 not to worry we will do another test in 3 months. The thing that annoys me I've had these symptoms for the last eight months and they want me to wait another three. I wasn't expecting to be told about my thyroid so didn't know what to ask. Looking online I found alot of frustrated people with same tsh and not being treated. That's why I asked here if it's high. I will try to educate myself so I'll have more understanding for the next test. But not looking forward to next three months.

I was at 4.9 my gp fobbed me off for 10 years told me I was depressed gave me anti depressants gladly I threw them in the bin I was tired because I was a mother, my hair was falling out due to stress my skin was dry and flaky because of dairy... I educated myself on ranges etc I booked an appointment with Dr Wilson in the Leinster Clinic while waiting for that I changed gp he put me on eltroxin 3 months later I was still the same if not worse, Dr Wilson started me on NDT my tsh is now at 0.5, after being told I wasnt releasing an egg I would need help getting pregnant we fell pregnant naturally and I feel great the Endo in the hospital is a complete moron I see Dr Wilson solely bloods every 4 weeks he checks them and alters ndt accordingly. I haven't looked back x

Delaney101

Hi elaney

back in 2017 my TSH was 4.95,,elevated and I was experiencing some horrible symptons (leg pains; fatigue; brain fog)...my TPOab were 1,194.3

I was diagnosed with hashimotos thyroiditis and put on 50mcg of eltroxin..my TSH fell back down to 2.87 then in jan 2018 2.49..feeling much better

certainly, TSH of 4.9 is elevated and you should follow advice above, which is good

elaney

Thanks everyone. I just got the impression that it wasn't that bad and I certainly thought my symptoms were all in my head good to hear all your experiences. I can definitely relate to the dry skin it's like a snow storm at times. I also have the leg pain on and off. I won't be fobbed off the next time especially as if I don't have to live like this. I need to arm myself with all the information and be ready for my next test. You have all put my mind at rest.x

qo2cj1dsne8y4k

I would literally kill to have a tsh of 4, mine currently is 180. But I find drs can be a bit dismissive of thyroid problems. Two years ago I was sent to a+e with tsh of 347, the ED dr didn’t even wait for my bloods to come back from lab. He doubled my meds told me that I was alert, young, walking and talking that I was to go back to my gp in 6 weeks I was fine. The next morning I recieved a call from the nurse manager in a+e requesting I come back immediately, lab results were back and she couldn’t believe I was sent home.

Fact I’m making though, if you’re not well with a tsh of 4, then go back until they take you seriously. Unless you go through it you can’t understand how awful it is to feel like you do with a lazy thyroid.

RentDayBlues

Just on to vent, haven’t got bloods done in about 18 months, levels had been great for about 4-5 years and after the last test my tsh was sub 1 which I felt best on. Got bloods this week and my tsh has gone to 8.4

So I’m about to begin that fun cycle of small med increases followed by blood tests every few weeks. I had it managed so well, feel frustrated now

End vent

ace_irl

I'm just wondering if anyone can give me a bit of advice on getting blood tests done. I have to get them done for my thyroid but I have a horrible fear of need;es and blood tests. To the extent I'll get sick, shake too much for the doctor to safely do them or have a panic attack.

Does anyone have advice on how to manage this? Even the idea of it now makes me feel sick.

hadenoughofit

Hi. I'm a long term thyroid and auto-immune sufferer, my situation these days is pretty stable.

The problem in my experience is less the practicalities of having blood taken (there's not much to be said about it, it's a bite the bullet sort of deal - you either do or you don't), and more the medical context.

Most doctors run the stock TSH and T4 blood tests, and out of what is probably a fear of legal and professional exposure when prescribing replacement hormone tend to stick rigidly to the one size fits all guidelines on what average blood/target values are supposed to be.

There's a proportion of patients for whom this works fairly well, but lots (perhaps 30%+?) for whom for various reasons (thyroid unless it's classic primary hypothyroidism caused by dietary deficiencies and the like is often mixed up in lots of other issues like lifestyle, stress, gut trouble, nutrient absorbtion problems, food sensitivities, auto immune disturbances, auto immune attack on the thyroid, inherited tendencies and so on) it doesn't deliver a resolution of symptoms.

My personal experience in the 90s and early 2000s until a thyroidectomy in 2005 was that it made not a bit of difference what my symptoms were (i lost my career to long term chronic fatigue), or how I felt - this dogma was applied.

The possibility of auto-immune and/or secondary hypothyroidism (I was making the hormone, but not using it properly - so the stock blood values while not perfect were not far off) were denied until very shortly before the point when the post-op pathology report diagnosed a thyroid cancer, a hugely enlarged thryoid and advanced auto immune thyroid disease.

A big part of the problem is that mainstream medicine simply doesn't have effective diagnostic tools or treatment protocols to handle much more than basic primary hypothyroidism and hormone replacement, and even that takes little account of the reality that quite a few people often do much better at different blood values.

The result is that it's extremely difficult to get serious engagement in trouble shooting more complex situations, or those where the stock protocol isn't delivering. Most GP and endos seem to follow the dogma, and rationalise the issues away in the case of those patients for whom it doesn't work very well. (leave then feeling well)

The key issue for this reason is perhaps to if possible gain some sort of an overview of the realities of this environment (the conflict between the happy happy theory and the reality) by reading the topic carefully. I'm a little out of date, and it's important to realise that not everything you read is necessarily true either - but websites like Thyroid UK, Mary Shomon's pages, or Stop the Thyroid Madness are decent places to start.

Over time a fairly clear picture of the reality for many patients hoves into view through the murk...

The ideal is then to find a 'thyroid friendly' doctor, one who isn't overly blinded by the dogma/fearful of trying some options/the need to appear all knowing, and who will collaborate in an effort to find a solution. It helps enormously if you are well read up in advance, it's not territory to enter in wide eyed and blindly trusting mode.

There are a few about that are in this mould, that will within limits work with you.

You never know, you could well be one of the lucky ones for whom the stock protocol works well, and it's anyway where you have to start.

Don't be afraid though if it gets to that point to change docs if the treatment isn't working as it should/if your eventual guy turns out to be a one size fits all operator - personal experience suggests that it's a waste trying to change those that are not more open minded...

Seanachai

ace_irl wrote: »

I'm just wondering if anyone can give me a bit of advice on getting blood tests done. I have to get them done for my thyroid but I have a horrible fear of need;es and blood tests. To the extent I'll get sick, shake too much for the doctor to safely do them or have a panic attack.

Does anyone have advice on how to manage this? Even the idea of it now makes me feel sick.

As far as I know the tests on the site below are a finger-prick sample

https://www.letsgetchecked.com/ie/en/thyroid-test-plus/

Spook80

Just got diagnosed with hyperthyroidism. My t4 was 64.9 and t3 24.5, tsh 0.01.
Just been given tablets for it and also beta blockers as heart rate was very high.

Im getting referred to St.Vincents but does anyone know what to expect or what’s next in terms of an outcome? Is it just another blood test to tell me again how it is and more tablets?

hadenoughofit

This is quite long Spook, it's complex territory with potentially lots of grey areas. I'm not remotely medical, so it's just hearsay from personal experience and what gets written on thyroid forums. My issues were to do with auto immune issues and consequent secondary (producing the hormone, but not using it properly) hypothyroidism.

It'd probably make sense to get stuck in and start reading the books and on thyroid support sites - bearing in mind that not everything that people write is accurate. A picture emerges from the experience people report over time though...

The progression with hyperthyroidism seems often to be broadly along the lines of treat it with drugs to a certain point (not sure if this is indefinitely feasible), then if required intervention to reduce the output of the thyroid.

Interventions may be surgical (remove a part of it), or use of radioactive iodine. (kill off a proportion of it) There may even be other options by now.

I'm personally wary of radioactive iodine, and refused it after my own thyroidectomy 13 years ago for a thyroid cancer. (it's used/was used to kill off residual cancer cells, but reading seemed to suggest that it brought some risks of it's own)

There's likely other possible causes of hyperthyroidism, but one that comes up fairly frequently is auto immune attack on the thyroid. One form of this is known as Hashimoto's disease.

Mainstream medicine doesn't much go there, but alternative practitioners tend to suggest that it this these days seems often to have its origins in the sort of metabolic conditions that may eventually go on to cause chronic fatigue.

Combinations of genetic tendency, stress, lifestyle, mind state (routinely running high levels of stress hormone, mostly cortisol) and diet (many reportedly develop sensitivities to foods like wheat flour, pesticide residues confectionery and other stuff) reportedly and in my own experience lead to chronic irritation of the gut, and eventually (some dispute this) to the damaged gut wall leaking foodstuffs in the blood. Which causes a chronic over response of the immune system, which may then attack parts of the body. For some reason the thyroid seems often to get it...

Auto immune attack seems to depending on the occasion cause both over and under active thyroid, no idea why.

The issue that seems often to arise is that whatever the intervention is it by definition has to kill off more thyroid than is optimum, so people seem to end up either low on hormone and struggling with fatigue until it adjusts, or going on thyroid replacement. (taking hormone to bridge the gap)

Some seem to do fine on simple T4 only replacement in this situation, others struggle badly to find a regime that works well - experiencing fatigue and other hypothyroid symptoms.

The presence and behaviour of the remaining part of the thyroid (or of more widely based auto immune disturbance?) may be a disturbing factor - it reputedly by acting as a centre of auto immune disturbance or by being somewhat unpredictable in its output can make it tough to get to a replacement regime that leaves them feeling well. Some seem to report a huge breakthrough in this regard when the remainder of their thyroid is finally removed.

The trouble in this space is sometimes that endocrinologists tend to replace thyroid to whatever level the stock blood tests suggest is required, but to then discount reports from some patients that they are still feeling unwell. A few will work to try to get to the bottom of this.

The other big question to consider is what is causing the hyperthyroidism. If it's auto immune disturbances there are reports out there (there's at least one book 'How I Cured my Hashimotos Disease' or similar) of some managing to reverse the condition through careful dietary and lifestyle changes, especially if it's not too advanced.

It's probably worth getting up to speed on this topic, as IF there is an underlying cause of auto immune disturbance it may bring risks of other potentially serious problems down the road. So it might well be worth getting on top the situation. Doing so did wonders for my health and well-being...

Medical testing in my experience was not always a reliable indicator of auto immune issues - I was tested in lots of ways over the years for thyroid and broader issues and told I was fine. Yet the post thyroidectomy pathology report diagnosed advanced auto immune thyroid disease.

Thyroid is one of those fields where it seems to pay for many patients to get up to speed on management of their own condition...

Spook80

Thanks so much for the great post it’s very helpful.
I’m only at the beginning of this so a lot of research to do and probably will know a lot more after the hospital visit in a few weeks/months.

hadenoughofit

Hi Spook. Good luck with it. Give it socks...

The single best bit of advice from my own experience is to treat it as a walking between raindrops sort of exercise. It can be so important to take responsibility for ourselves. To get stuck in, read the topic up very carefully so that when the time (you need to be ahead of the posse) comes we're in a position to collaborate with a hopefully thyroid friendly and open minded doc if you can find one. Also to be in a position to form a view as to whether or not what is proposed makes sense...

Mainstream medicine has a big part to play, but I doubt I'd still be around if I hadn't taken this sort of approach.

My first post above sets out some perspectives on just one small part of this territory from personal experience.

Mainstream medicine doesn't do thyroid well, not unless you suffer from simple classic primary hypothyroidism where as a result of dietary deficiencies or whatever the thyroid is not making enough hormone - and you're lucky enough that the stock T4/TSH blood value based replacement protocol works well for you.

It's a hugely complex field, with lots of grey areas and subtle interactions with very poorly understood multiple body systems (immune, other hormones, subtle gut function, the hypothalamic pituitary axis, mind state, diet, lifestyle etc etc) - but there are only a very limited number of stock tests and treatments available.

The result from personal experience (and this is speculative) is that it's as much an art as a science. It seems also from experience that many docs de-facto ignore the problem if they can't treat it.

There's a lot that can be done by trialling differing replacement regimes, supplements and other dietary and lifestyle choices in quite a few cases, and the alternative side of the house while sometimes overplaying it's hand or being flat wrong has lots which personal experience suggests can be a lifesaver. Your average doc isn't necessarily open to this however, and can't or won't put the time into troubleshooting.

The health service meanwhile is focused on cost reduction and isn't keen to run ever more lab tests - it for example did it's bit to spanner the situation for some of us by de-listing T3 (the secondary hormone that some with conversion/secondary hypothyroidism need), and by refusing lab testing for T3 blood values to GPs... Prices as a result went crazy, and a consultant has to be seen for prescriptions etc...

These practical aspects then collide with medico/legal/cultural realities.

So they also tend to be resistant to cautiously prescribing stuff on a trial basis/without a diagnostic test or formal diagnosis (despite it being one of the best ways to troubleshoot some of these issues) since it creates legal and professional risks in respect of what the 'scientific' paradigm that dominates our culture regards as good practice. i.e. that you need an evidence based diagnosis to justify a treatment first, and this often gravitates to whether or not there is a definitive test - the results of which for possibly similar reasons tend to trump symptoms and patient feedback every time....

LirW

Hi,

I'm booked in for. Thyroid blood test next week and I'm absolutely bricking it.
I know something isn't right with me, I had my child 18 months ago and had to stop breastfeeding very early, but instead of going down in weight I went up, I still continued eating the same as always and I used to be very active but I experienced a huge dip in my activity tolerance. I feel like a slob, constantly tired, no tolerance to exercise whatsoever, it gives me the sweats constantly but when I'm resting I'm always cold and wrapped in a dressing gown and blankets.
I went from a size S to a size L, my beautiful hair is falling out and thinning and my skin is in absolute sh1te.

Now I do have another hormonal issue already, I have a polycystic ovary, so I'm not having the actual syndrome but my hormones are very messed up there, I started medication and it improved my quality of life hugely, it delays my periods completely and I don't get my excruciating migraines anymore.
I've read that PCO and thyroid issues often get hand in hand. And while I got better there, I feel really crap for a few months now, I have no energy or drive and I feel totally knackered after a day of housework and kids minding and I can't get myself to do anything for myself.

Anyway, I hope this either rules out or confirms something and since there are so many here with their own stories:
What should I ask the doctor? What do I need to tell her and should I bring anything? I'm really scared to be fobbed off but I know something isn't right with me.

jellybear

LirW, sorry you hear you're having such a hard time. It's so easy to just pass of the symptoms as everyday tiredness- I remember thinking 'I'm just busy in work/ we've just moved house etc' but you know your body so fair play to you for knowing something's wrong.
In relation to bring fobbed off I wouldn't worry too much as your blood results will show your T4 and TSH levels so they will show if there is something wrong with your thyroid.
It can be a manageable condition, although I know some people can have a very difficult time with medications and getting the correct dosage etc however just be aware that this can take time to figure out and once you have the correct dosage things can improve very quickly for you.
Try not to every too much about the appointment. Think positively- it's the first step you're taking to getting back to your usual self
Best of luck!

LirW

jellybear wrote: »

LirW, sorry you hear you're having such a hard time. It's so easy to just pass of the symptoms as everyday tiredness- I remember thinking 'I'm just busy in work/ we've just moved house etc' but you know your body so fair play to you for knowing something's wrong.
In relation to bring fobbed off I wouldn't worry too much as your blood results will show your T4 and TSH levels so they will show if there is something wrong with your thyroid.
It can be a manageable condition, although I know some people can have a very difficult time with medications and getting the correct dosage etc however just be aware that this can take time to figure out and once you have the correct dosage things can improve very quickly for you.
Try not to every too much about the appointment. Think positively- it's the first step you're taking to getting back to your usual self
Best of luck!

Thank you so much! I'm currently staying at home with my daughter and I just can't get over this fatigue, I've never felt quite like it and that with my weight piled on and not shifting just doesn't sit right.
I'm probably also still quite wary because it took me years to be told that my internal lady parts aren't normal or doing normal things.
At least I'm engaging the doctor now - she's specialist in women's health and was a former gyn so I've heard.

jellybear

That's great though that you feel comfortable with your doctor, it makes such a difference

If it is your thyroid that's causing the tiredness it really can just floor you. I'm currently on the couch as I'm having a bad day today with tiredness. The weight is also really difficult to accept I put on a bit of weight before I was diagnosed and it is so tough as I also have arthritis so any extra weight causes me joint pain and it's tough to exercise when you're both tired and sore but sure things could be worse
I hope your visit gives you the answers you need

hadenoughofit

Hi LirW. As JB, thyroid can leave you knackered all the time in a way which sleeps makes no difference to.

Don’t worry about the thyroid testing, it’s pretty straightforward.

I'm no medic, and this is absolutely not to suggest that the following may be in play in your situation. It’s just to communicate a bigger picture regarding what are only possibilities. To very roughly set out some possibilities regarding how issues can link together based on my own experience.

They may be entirely irrelevant to you.

Take it step by step. Go really steadily, read all you can on the subject, and hopefully find a co-operatively minded doctor of more progressive views on thyroid and related to work with if you can.

With luck it’ll prove to be a much simpler situation than some of the angles mentioned here.

The basic seems to be that pretty much all of the major hormone systems (and many others) interact - sex hormones, thyroid, the various adrenal ones like cortisol that trigger metabolic changes when in response to stress, illness, fear and so on.

They when properly regulated engage in a dance through the monthly cycle - as one rises in levels the other(s) reduce to compensate etc.

Problems with one are for this reason often linked with problems in others too. I don't know anything about PCO (not having been equipped that way) but it seems the condition can often be linked with hypothyroidism. (low thyroid hormone)

There's a lot of information on the bigger picture on the stop the thyroid madness site which from personal experience is pretty outspoken about the problems that may arise from how mainstream medicine sometimes handles thyroid, but seems sound enough anytime I've checked/from my own experience. (I can't post the full link, but they have a page on thyroid and PCO connections) It’s well worth poking around the rest of the site too.

There's a couple of other sites by the likes of Mary Shomon and Thyroid UK which fill in lots of what doctors normally don't talk about too.

One to watch out for from personal experience (i lost my thyroid after many years of struggling with chronic fatigue to a thyroid cancer caused by long undiagnosed despite testing autoimmune thyroid disease) is that the tests to detect this (auto immune thyroid disease is possibly linked with PCO too they say) may not always be reliable.

If the stock T4 and TSH test used by most doctors says you are hypothyroid (low levels of thyroid hormone circulating in your blood which typically is the result of the thyroid itself for whatever reason not making enough) it's potentially good news in one sense, in that it at least makes clear that you have a definite issue which can probably be treated by supplementing your diet or by prescribing thyroid hormone.

If on the other hand the test comes up negative (that you are within range on the thyroid hormone levels circulating in your blood) hard personal and seemingly not uncommon experience (the sites will have lots to say on this) says that it isn't necessarily the whole story.

It's possible to produce plenty of hormone and have it in circulation in the blood (which is essentially how the body holds a stock of it), but to not be able to use it due to problems with the subsequent processes involved in its conversion to the active form used in the cells.

This condition is sometimes called secondary hypothyroidism, with luck it won't be yours - but it's worth looking up on some of the thyroid support sites. It's not unheard of for it to be linked with/and or messed up by (especially thyroid I think) autoimmune issues. It's hard to get it diagnosed, basically because there don't seem to be reliable tests available.

My experience was that it took a trial (something most doctors are reluctant to undertake) with a different form of the thyroid hormone named T3 which the body can directly use to prove that this was my issue.

Personal experience and reading also suggest that auto immune troubles can be associated with food sensitivities - stuff like factory breads, milk, sugars, additives used in processed foods and pesticide residues etc can play a part. If this is the case then experimenting to find the foods causing the bother and getting them out of your diet could be helpful.

A final thought is that stress is not good - it results in the release of lots of extra cortisol (an adrenal hormone) which plays havoc with thyroid regulation and for various reasons greatly increases the possibility of issues like high blood pressure, the above food sensitivities, various issues to do with the gut becoming irritated etc.

In the worst case the adrenals if heavily stressed may almost shut down, leaving the body short of cortisol which apparently is also needed for the various thyroid functions to work properly.

Again worth reading about.

LirW

hadenoughofit,
Thank you so much for all this input!
It is really good to get advice from people dealing with it about the reality of it.

I'll wait for the outcome of the test, I hope I won't be waiting for too long and I'll report back with the outcome!

embee

Hi folks, I've just got a quick question!

I have MS, diagnosed in 2014. In July I had the brain and whole spine MRI with contrast, the usual scan I have for the MS. Neurologist reviewed MRI, the MS is stable at long last but there was a nodule on my thyroid which needs investigating. Am on a medication for the MS which requires me to have monthly blood and urine tests. Every three months they test they thyroid too. It's been normal every time do I'm just wondering, is a nodule a result of over or under active thyroid? Googled it, big mistake, loads of talk about thyroid cancer! Can nodules on the thyroid be benign? She's referred me for an ultrasound scan but MS Nurse says it could be months before I get that!

hadenoughofit

Good luck with the test LirW...

Two thoughts.

(a) There's classical symptoms of low thryoid (or peculiarly enough they also can point to an over actrive thyroid) which while not definitive and dependent on severity do tend to be very suggestive of issues. eg stuff like spotty skin (esp back), brain fog - poor short term memory/problems taking in information when reading or when doing mental arithmetic, cold extremities, achey joints, blurry eyesight/problems focusing, dead beat achey muscles when eg climbing a stairs/holding your arms over your head to wash your hair in the shower, lady problems, black under the eyes/slow liver, gut irregularity etc.

Most of the thyroid support sites will have a page listing and describing these. If you find you're ticking almost all of the boxes (almost anybody can probably tick a few) it tends to be a strong indication of a thyroid problem.

It's a pity, but most medics don't take much notice of symptoms, they prefer lab tests for a variety of reasons. Even though that was how the condition was diagnosed in years gone by. Lab tests are the ideal, but only if they truly correlate with patient realities.

(b) Most hopefully won't, but don't let anybody away with just saying that the result is 'normal' or whatever. Make sure you get a printed copy of the blood values - that way you can dig around afterwards and reach your own view on what the story might be.

There's a few reasons why this can be useful:

1. The ranges the system recognises as 'normal' for thyroid and related hormone levels are wide, although thank goodness not as wide as they used to be.

The perception is often that anything within the ranges is OK, but personal experience and the reports of many on thyroid support forums suggests that this is often not the case. eg I need to run a very low TSH and high levels of replacement (synthetic) thyroid hormone to feel well.

It's hard to know for sure (few were tested when they were healthy, so there's typically not much by way of a real world basline about to judge by), but there's suggestions that individuals vary quite a bit on the blood values at which they feel well. Also that the range that works properly is potentially quite a lot tighter than the test vales suggest.

The latter may be a consequence of other factors, but there's often benefit to be had (if the medic will play ball) with trying some differing levels.

It seems likely too that these values are set by economic as well as medical/well being criteria. A public health system may (?) well seek to avoid having to treat those not overtly ill, or to spend time and money in fine tuning replacement levels.

Be cautious in this regard of a TSH reading near the upper end of the range. TSH is thyroid stimulating hormone, the more there is, the more your system is asking for the thyroid to increase its output.

Bear in mind also that with secondary hypothyroidism you can have plenty of thyroid hormone in circulation and still be hypothyroid at the cellular level.

2. Some medics are very cautious of thyroid hormone, the odd one may tend to try to keep replacement thyroid hormone levels (not TSH, it will tend to the upper end of the range in that case) in the lower end of the ranges which isn't always conducive to feeling well. (there were it seems some majors medical mishaps in other countries as a result of massive overuse of it many years ago, it may have left scars)

3. Testing for just total T4 and TSH is often done (there's several other measures that used to be done) these days to cut costs for the system, but it may not show up the whole picture. It requires a consultant now to order some of the tests. (eg total and free T3)

A progressive consultant endocrinologist (maybe < age 50, or a switched on older guy?) that is aware of real world patient experience can be worth a lot if the problems persist, but the stock tests are coming up negative....

None of the above is intended to be down on medicine, it's saved my life several times. It's just that most docs find themselves tightly squeezed between the bureaucracy and patient expectations....

hadenoughofit

Hi Embee. Again bear in mind that I'm not a doctor, I'm only reporting hearsay. Again - don't rely on this. It's definitely one for your specialists to sort out.

Thyroid cancer is a bit of a complicated area as you found out. I spent a lot of time looking at it, as i had a fairly dangerous one - but having had my thyroid removed 13 yrs ago I seem to have so far dodged the bullet.

Lots have undetected thyroid nodules, and most are benign so far as I know. They are often picked up during a precautionary ultrasound scan. The usual test if a suspicous one is found is (was some years ago anyway) a needle biopsy - so they can check the cells under a microscope.

Most nodules I think (?) are typically the result of auto immune attack on thyroid cells. The cells end up all messed up, and there's a typically fairly slow progression. Which in come cases can turn malignant - if the wrong sort of cell damage occurs.

The result eventually can be over or under activity (hypo or hyperthyroidism) depending on what's going on - but the vast majority I suspect don't seem to experience symptoms.

There's major judgement calls involved in reviewing suspect cells from a thyroid nodule, and debate about what criteria to apply and how in making a call - the pathologist will look for certain classic indicators.

So far as I know the criteria have actually been relaxed quite a bit in recent years - on the basis that many nodules were being called as malignant when they likely were not. The result was presumably that many thyroids were being removed for questionable reasons and people put on replacement hormone and receiving radioactive iodine treatment.

When you consider the furore that arises over false negative results for cancer tests you can see why this might be the case. One unoffical finger in the air estimate some years ago thought that perhaps 30% of those thyroid 'cancers' diagnosed as malignant actually were not.

Presuming malignancy (which isn't hugely likely) there's several varieties of thyroid cancer. There's one that's very dangerous, and another somewhat less so. The vast majority it seems to have been concluded (?) are of the mildest type which isn't aggressive.