Dr suspected thyroid endo doesn't pineal cyst found any ideas?

Hi any help with what might be going on with me would be massively appreciated - my memory is bad so I may miss bits sorry pls feel free to ask any questions if I've rambled also lol!

I'm 36 3 kids 1 stillbirth after 2nd pregnancy

BMI under weight can't gain and crave sugar have a good appetite

Folate 4.5 (now on folic acid)

Tsh 0.7 but t3 and t4 ok - elevated d dimer heart rate palpitations breathless and dizziness have prompted gp to send to ambulatory care twice in last year tests inconclusive but they can see by obs im not right I have a constant headache and I keep getting the sound like someone's muffling a microphone in my right ear it's really loud

Very low blood pressure only in last 3-4 years sits around 80/50 never used to can remember the top number always used to be in 100s and bottom nearer 80

I have pcos diagnosed when I was 21 with bloods and laparoscopic surgery

Insomnia tired all day can't sleep at night - wake up feeling sick have diagnosis of irritable bowel 5 yrs normal prior

Goosebumps and sweats temp is completely all over the place was 35 after total hysto couldn't raise it

Balance issues last 2 yrs fallen down the stairs 4 times recently first time resulting in placental abrupt

Strange shivers in arms and legs sometimes one limb at a time

Heart jumps around in chest normally when I'm tired or trying to get to sleep most nights 4am wake up soaked in sweat me and the bed have to vacate and hit the sofa but can't get back to sleep until about 6-7 as feel nauseous have a banging headache and often I'm sick then I'm up for the school run by 8

Memory has suddenly 3yrs ago become terrible I could stop and cry so many times daily as I play hide and seek with myself and forget convos mid flow it's really bad scares me I can be driving along and suddenly I don't know where I'm going and I was asked my daughters name two weeks after she was born and I didn't know it - my children are taking the piss daily as I forget everything and can't speak properly I have more recently found the wrong words coming out when I'm talking the word will be relevant but not correct - book/read etc... driving me mad

Pins and needles in feet and arms hands more so on waking or sitting for a while

Typing recently has started to look dyslexic (spell check is working overtime too) I had a high IQ. Would hate to know what it is now I feel thick

On estrogen daily after oopherectomy and hysto due to pain and cyst also suspect histology but came back all clear

I feel like my brain Miss fires - I will suddenly lose balance and fall or I keep knocking my elbows knees shoulders head on door frames etc feel clumsy

Tests for everything other than folate being low have come back clear

I also have a really bad ache in my lower back that wasn't rectified by histo I need to urinate frequently

I've been tested for everything I think - addisons next week - an MRI was ordered as I failed the gp memory test and the only thing found was 6mm pineal cyst

I have a diagnosis of anxiety for all of this so far waiting to see a neuro and endocrinologist met me last week and wants to test for addisons as I have some small dark patches on my hands I think as she kept staring at them and a scar I noticed since is brown

Could the cyst be causing any of this?

I'm at a loss and feel terrible my neck is also permanently stiff seeing physio next week as my shoulders are also really hurting and I keep getting bouts of siatica in right leg

Thanks in advance sorry it's so long

65 Replies
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Sorry also keep getting painful joints

So, have they done any tests for thyroid? If so, do you have the results? How about B12, did they test that?

Thyroid is ok the endocrinologist thinks but she's testing antibodies and suspects low cortisol I think - I also have developed cystic acne but only in my thyroid area and jaw line I've had lots of tests nothing conclusive my b12 is 300 and something

I have loads of blood forms for 9am Tuesday morning

But, if she only thinks, why doesn't she do the tests to be sure? I would not accept that as an answer : I don't think it's your thyroid. I would insist on having thyroid tests done. Why doesn't she think it's your thyroid? All the symptoms say 'thyroid'.

Low cortisol came back going for a synacthen test soon

The problem with a synacthen test is that it's all black or white. It either diagnoses Addison's, or else they say you're 'fine'. But, your cortisol can still be too low for good health, and they will just ignore it.

This is what worries me - thank you, I have constant lower back ache I always thought it was my ovaries (until they took them and I woke up from op in more pain!πŸ™ˆin my back) the rest was much better tho! I'm now leaning towards that being my adrenal glands trying to tell me something x

I don't know if adrenals can hurt...

According to the internet they can! Lol

ok :)

You were right I have 3 somethings on my thyroid one of which is a concern don't know anymore yet xx

I have low cortisol have to have synacthen test next

And yet my gp says the 6mm pineal cyst is incidental not important - but for me it's too close to my pituitary (and from what I can see part of the same system!) my memory is shocking! Getting really bad now I'm avoiding everybody

Found 3 masses? One is large and I will hear from cons in next 7 days now x

On my thyroid sorry x

Welcome to our forum and am sorry, at the age of 36, you are suffering very disabling symptoms. I'd have a guess that you are hypothyroid due to your clinical sympitoms alone and I am not medically qualified. Your symptoms are widespread and especially 'brain fog' and I'll give you a list of symptoms and tick them off and give to your GP.

The most serious mistake of the guidelines in the UK, is that the medical profession have been told only to diagnose hypothyroidism if the TSH reaches 10. In the USA it is 3+.

First PCOS - I don't have the link but the following is the excerpt and show this to your doctor also:-

Multiple Ovarian Cysts as

a Major Symptom of Hypothyroidism

The case I describe below is of importance to women with polycystic ovaries. If they have evidence, such as a high TSH, that conventional clinicians accept as evidence of hypothyroidism, they may fair well. But the TSH is not a valid gauge of a woman's

tissue thyroid status. Because of this, she may fair best by adopting self-directed care. At any rate, for women with ovarian cysts, this case is one of extreme importance.

In 2008, doctors at the gynecology department in Gunma, Japan reported the case of a 21-year-old women with primary hypothyroidism. Her doctor referred her to the gynecology department because she had abdominal pain and her abdomen was distended up to the level of her navel.

At the gynecology clinic she underwent an abdominal ultrasound and CT scan. These imaging procedures showed multiple cysts on both her right and her left ovary.

The woman's cholesterol level and liver function were increased. She also had a high level of the muscle enzyme (creatine phosphokinase) that's often high in hypothyroidism.

Blood testing also showed that the woman had primary hypothyroidism from autoimmune thyroiditis.

It is noteworthy that the young woman's ovarian cysts completely disappeared soon after she began thyroid hormone therapy. Other researchers have reported girls with primary hypothyroidism whose main health problems were ovarian cysts or precocious puberty. But this appears to be the first case in which a young adult female had ovarian cysts that resulted from autoimmune-induced hypothyroidism.

The researchers cautioned clinicians: "To avoid inadvertent surgery to remove an ovarian tumor, it is essential that a patient with multiple ovarian cysts and hypothyroidism be properly managed, as the simple replacement of a thyroid hormone could resolve the ovarian cysts."[1]


1. Kubota, K., Itho, M., Kishi, H., et al.: Primary hypothyroidism presenting as

multiple ovarian cysts in an adult woman: a case report. Gynecol. Endocrinol.,

24(10):586-589, 2008.


The following are clinical symptoms and tick off the ones you have and discuss with GP.


Ask GP for a Full Thyroid Function Test to determine hypothyroidism or hashimotos. Hashimotos means you have thyroid antibodies attacking the gland and the person becomes hypothyroid. The treatment is the same for both.

You can tell GP you have asked for information from the NHS Choices for advice about dysfunctions of the thyroid gland, Thyroiduk.org.uk.

You need the blood test to be at the very earliest possible, fasting (you can drink water) and if you were taking thyroid hormones you'd allow a gap of 24 hours between the last dose and the test and take it afterwards.

TSH, T4, T3, Free T4, Free T3 and thyroid antibodies. Vitamin B12, Vitamin D, iron, ferritin and folate.

Get a print-out from the surgery and post on a new question for responses.

I note you are seeing a neurologist. I hope both are sympathetic and that the Endocrinologist especially takes all of the tests above.

Your GP may have done TSH and T4 alone and that doesn't give us/you a bigger picture. FT4 and FT3 and antibodies plus vitamins which are usually depleted can cause problems.

Always get a print-out of your blood tests and 'normal' isn't good enough for those who have hypo, it is a TSH of below 1 and a FT4 and FT3 towards the top of the range. You will see from link below why both the Frees are required.


Give GP a copy of the following and the Endo:-


Our heart struggles when we've not sufficient hormones. Mine did a lot but I am well now that I am on the thyroid hormones that suit my body and at an optimum dose.

The problem doctors have is that they've been instructed only the TSH and T4 is satisfactory, it is definitely not.

I paid for a blue horizon with antibodies last September and it came back ok - subclininal hyper and it's still that now she's ruled it out pretty much - it's cortisol and sex hormones she is focusing on at the minute I think

Have you had cortisol tests and sex hormone tests?

Tuesday I think got a ton of forms met endo this week

That's happening right now and I just dropped my urine sample down (24hr one) I was sick late eve was awake from 2-5 as usual now feel knackered but wired same every day but stress and activity trips away etc seem to make me worse I end up shaking and vomiting by afternoon eve so strange - all started 2008 sudden weight loss more stress than I've ever had to deal with and for a prolonged time And I know I've never recovered from it

I have pcos - they took everything in Jan thinking it was that removed both ovaries and a large cyst

The palpitations or heart jumping in chest with head pain is the scariest symptom for me that and my mental decline memory and word recall - that and feeling cold all the time but I must get hot cos I wake 2/4 am everyday soaked in sweat after 1-2 hours sleep

Estrogen isn't helping same as pre hysto

All been blamed on anxiety and ibs reflux and tension headaches (all started together) insomnia is driving me mad

If my cortisol is low on the urine test how urgent is that? Will I hear before my next endoc in 3 months time? Thanks

It depends how low. Addisons (and really low cortisol) can kill you.

whatever is going on with me I've set up hey Siri with my medical Id as I'm at home with a 1 yr old all day and sometimes I think I'm going to go down I'm genuinely scared some nights I won't wake up and I can see how that may sound like major anxiety but it does all feel physical and I do have dodgy results when they test me whilst I'm like it - my blood pressure has sat ridiculously low for several years now dropped suddenly along with my weight all my pregnancies have been iugr 5lb babies that I don't carry to term - placental avruption at 29 weeks still birth Jan 2014 accompanied with major shivers

Hi I read that estrogen can increase cortisol levels - I have come back with low cortisol and I'm on estrogen patches 75mcg as no ovaries etc... the test guidelines online say estrogen must b stopped for 6 weeks prior, I can't do this as my night sweats are still bad but without estrogen they're terrible - consultant has told me to stay on it - could that make me look ok when I'm not? Thanks sorry for all the questions x

Hi I got a call from the consultant my cortisol 9am is low and I have to go for a synacthen test next waiting for an appointment to come thru from the hospital thanks x

Thanks I was sent by gp to ambulatory care in September how I feel daily basically tipped over into a bit of a crisis - breathless nearly blacking out on standing up and dizzy off balance with tachycardia sweating and headache - they decided it might not b anxiety that day and then told me they'd do a quick blood test and send me home - next thing I have a ct scan to rule out chest clot - 3 weeks ago I had an MRI and they found pineal cyst 6mm incidental - I am having text book addisons symptoms I've been reading all night - just dropped my 24hr urine at pathology and will wait for a result on that- and have 9 am cortisol adstrone and about 8 other things - I'm freezing cold and was wide awake at 2am I was nauseaus at 9pm threw up at half 10 and can't believe how many of these symptoms I have (all of them) funny cos I've been thinking this might kill me for a while whatever it is πŸ˜‚ I've been wondering all month where this sun tan has come from too everyone telling me how brown I look - endocrinologist grabbed my hands first appointment meeting her and stared at them in great detail for ages - I've been doing that too now - I've got a scar on my hand that's turned brown same on my face

if they send you for an insulin stress test, take someone with you as it really knocks you out and you won't be able to get home on your own. But you sound bad enough that they won't need to do one.

Thank you As crazy as this sounds I'm hoping it is because I feel so so ill and it's gone on for so long and I'm getting weaker and weaker :(

Does the synacthen test make u ill? I feel so weak all the time I'm worried I might pass out or something should I get someone to baby sit my 1 yr old? Etc... thanks xx

I was fine with the synacthen test - but couldn't stop crying - didn't feel sad or anything, just started to gush and couldn't stop. So you might want to take tissues. After that I actually felt better than usual. But the insulin stress test was dreadful - collapsed in the street afterwards and just lay there for ages until I could crawl my way to a taxi. I expect everyone thought I was drunk.

Oh no that sounds awful for you did u go alone? I'm going to make sure I've got someone with me I think just incase thank you xx

Yes. No one warned me that it could have an effect. The test itself was fine, but at the end they give you a digestive biscuit and some flat lucozade to get your blood sugar back up I suppose. I felt OK for about 5 mins after that, so I left and it hit me just as I got onto the street outside the hospital (full symptoms: dizzy, blinding headache, nausea, loss of balance, back ache) - so wait at least 15 mins before you leave - just in case.

I've been feeling bad all day...I have a cold I caught off the kids and have a really bad upset tummy for last 48 hours I've got this constant pain in my lower back (always there but quite bad today) headache and I've been having palpitations this avo-hands keep shaking in last hour or so when I'm holding my phone etc... I will probably feel better in the morning I normally do if I'm not too sick threw up a couple of hours ago. Just want them to get this test out of the way thanks for listening xx

Rest. Don't eat sweet stuff, drink plenty of water and meditate if you can. I had to sort mine out myself as I was a couple of points into the normal range, and thats what I found helped. You can treat the headache (I found combination aspirin, paracetamol and caffeine best) but it can make your stomach worse, Throwing up usually makes you feel better. The back ache is usually the adrenals. Breathing to music for 15 mins a day (trying to get down to 6 breathes a minute) helps the palpitations, but it takes months to get to 6.

The sweet stuff! I swear that's keeping me going! πŸ™ˆ infact when I get the shaking it's 3 cups of sugary hot tea that sorts me out enough to stop tensing up and sweating/shaking xx thanks for this it's been lonely xx

I've been trying to meditate again I used to not be able to go a day without - I've just felt so ill last few years and let everything slide takes all my energy to get 3 kids to and from school etc xx

Because I was dizzy sweating and nauseaus I had tachycardia and chest pain and the top of my head hurt to touch - does sometimes but this was all at once I nearly fell (again) down the stairs

catandco Just want to lend some sympathy for your awful symptoms, and also anger on your behalf that the anxiety card has already been played by doctors who ought to be treating this complex of problems with much more urgency. Do you have any support at home from a partner, a family member or a friend?

You've received good advice from other members here. As I read your description of your problems, it seems to me that you have a 'global' problem affecting the hypothalamic-pituitary-adrenal axis. You will really need to push for correct diagnosis and treatment of your problems, but at least one doctor has recognised the significance of the skin 'tan'. Good luck with it all and do let us know of any developments.

Thank you

I've just had a shower and I'm making milk (total hysto inc ovaries) on estrogen only patches


More likely high prolactin from pituitary problem than effect of estrogen patches.

They r checking acth or something will that show on the test if pituitary?

ACTH is synacthen test. It doesn't tell you absolutely if the problem is with the adrenals or the pituitary. If it is abnormal but not definitive, the next step is usually CT or MRI, ECG and Insulin stress test (if no heart problems).

When they did an ecg last sept when dr sent me in I only had a ....think it said abnormal sinus arythmia? Don't think they thought that mattered so must common - the brain mri I had last month due to memory/cognitive word recall will they do one on my back? It's really uncomfortable and I keep throwing my right hip out

The other thing they said they saw back then was inflammation markers but they put that down to me needing the hysto (which made my back pain worse!) πŸ˜‚πŸ™„x

My heart rate was so low on the ECG that the print out said something like sinus bradycardia - this patient is almost dead! (or that's what the nurse translated it to!

I used to get low back and groin pain which meant I couldn't move my right leg forward, so I'd suddently have to stop walking and wait until it eased off. It just went gradually as I got better. Worth looking up suitable gentle stretches on the internet.

Thank you I will - bloody hell sounds like you've had an awful time - it's such a drain trying to get them to listen and it shouldn't have to be this hard to get help how do you medicate yourself? Do they not give you any help whatsoever? Xx

It's been 20 years now and I got no help at all, but I'm pretty much OK now. Diet, supplements, DHEA and adrenal glandulars - but I didn't have a prolactin problem, just low cortisol and low TSH production (so low T4 and T3).

I'm sorry the system has been so crap, I've been ill since 2007 can pretty much remember the month it all started as was the first holiday I took my boys on alone and I couldn't get warm in 35 degree heat - I was also on the loo constantly - that never stopped and I was diagnosed with anxiety disorder and ibs after they ruled out crohns (I went from a 16 - 8 in 6 months I think it was I have tsh 0.7 but my t3 and t4 are top end of normal so it's not that according to endoc - I'm terrified the test will say I'm fine, I want them to find it and help me as I'm exhausted with it all xx sounds like you have been battling for twice as long glad you found ways to treat yourself i am thinking along the same lines but waiting for tests to be complete so I don't skew any results x

I love your user name I'm in margate but my mum was born very close to that statue! Lol x

Hi thanks for your reply I haven't stopped this week as we have moved and the kids have all been ill - if my cortisol is low on the bloods does this def mean they found what's been wrong all this time? Does the synacthen just tell them a bit more or could they turn round and say I'm fine again? I have had strange blood results both thyroid glucose temp and blood pressure elevated heart rate and constant headaches in the end they just end up sending me home with anxiety but my levels are never right so I'm really hoping to get a diagnosis now so I can start to heal myself if I can xx

Thanks everyone been running around all morning but will read up properly on all the advice tonight thanks again xx

You might find this link of some interest:


Thank you - according to my gp the cyst is an incidental finding and won't b causing any symptoms! Lol - I'm imagining it again haha - I found out about it after waiting 4 weeks to hear and ringing and gp sec said all clear then endocrinologist mentioned it casually in passing on our first meeting - i have about 10 blood forms for the morning but the milk is a new thing I noticed tonight πŸ™ˆ

Seems quite possible that you have some sort of pituitary problem (small tumour) which is over-producing prolactin. The sort of increase in prolactin quite often found when peiople have raised TSH (the two often change together) doesn't usually get high enough for milk production.

Hello there catandco , you sound like you must feel sooo terrible, I have been in your position so know how it feels :-(

Yes, Addisons definately needs to be ruled out considering the darkening of your scars and some of the other issues and vomiting etc.

Possibly ataxia in some form which affects your cerebellum and causes coordination, balance, speech issues and even increased urination of which B12 deficiency can cause and your B12 level is too low so maybe look more into this and try and get your levels up or test for pernicious anemia etc to rule out.

I had ataxia when left untreated for hypothyroidism most my child/teenhood and had balance/co-ordination issues, massive memory loss and literally lost all my vocab and stuttered alongside tinnitus. Mine however improved when thyroid medicated although only once on T3 only but my tsh had been sky high in comparison to yours but maybe worth a blood test to check your T3 levels are in order. Many issues remained until I went Gluten Free and I had a autoimmune sleep disorder called idiopathic hypersomnia and the ataxia seemed to be returning until I went GF also.

I would also like to add that I think you definately need to rule out coeliac disease and gluten ataxia too if no luck with the rest of it. If you have had the blood test screen only for coeliac, this is officially known to have a high rate of false negative results so coeliac can easily be missed and remain undiagnosed and only an endoscopy can rule it out. However, please note that those diagnosed with gluten ataxia can also not have the damage in the stomach that shows up on endoscopy. I test negative for coeliac although they have diagnosed me with Non-coeliac gluten sensitivity because of the test results when on gluten trials so a gluten free diet could be tried to rule out.

Symptoms typical for coeliac are nausea, weight loss, nutritional deficiency, stomach issues, and so on and so on many of which you have listed and can obviously cause B12 issues but gluten ataxia also has issues similar to that of a B12 deficiency. Apparently, gluten is considered the most likely cause of idiopathic ataxia (40%) and is also one of the few treatable ones and you can read this if you would like to learn more:


Also, it may be worth looking at other causes of ataxia if none of the above resolves your issues such as Multiple sclerosis.

I also have galactorrhea (milk production) but have had forever and none of my other health issues seem to impact it in any way. You can check your prolactin levels with a blood test to rule out prolactinoma or pituity issue etc but it generally isn't a problem if these come back okay. You may want to get a breast screen also to check for any unusual lumps/bumps and rule out infection in the duts but other than that they are only concerned if the substance produced changes colour :-)

I do hope you get to the bottom of it soon :-)

Thank you so much for your reply and I'm sorry to hear you have suffered with all of this too - I definitely need to sort out my diet food has become my enemy I mainly live on chicken grapes and sugar I never used to like sugary tea I now live on it, I've had bloods taken Tuesday cealiac is one of them I remember seeing they are testing for not sure how long results will take took 5 weeks to hear about the brain cyst they found so I've stopped going with the no news is good news line now - my sister had bc before she was 40 (different dad) she has the braca1 gene my mum doesn't so I'm assumed ok there my dr doesn't think my b12 is low but from what I'm reading it's lower than it should be

I am much better now thanks, it just helps to know others know how you feel :-)

If your diet is that restrictive, you are likely low in all your minerals and vitamins which can make you feel really ill, even the little ones and not just the main ones we've suggested. Have a google of the symptoms of calcium deficiency/iodine deficiency/potassium deficiency/ magnesium and so on and you'll see many of the symptoms you mentioned in your original message.

Your body needs energy from food to function and if you don't give it enough, it will keep you going by other means like adrenaline which then raises your sugar levels and makes you feel less hungry and crave more sugar and you can end up going round in one big loop putting massive pressure on your adrenals and pancreas in the mean time which will simply stop functioning properly after a while. All your other parts like thyroid need lots of different vitamins to function properly as well. My mum got into this kind of loop for years and now things have started packing in.

Do you have issues with food or just because you haven't got an appetite because your tummy isn't good etc? I was never hungry until I gave up gluten so I understand this can happen if certain foods unknowingly make you worse and cause problems. But it really does need to be resolved and you must figure out which foods via things like elimination diets. Or if a tummy issue, figure out what tummy issue. Maybe if you can't eat a more balanced diet for now, maybe at least get a good multi-vit that provides 100%rda of all the minerals and vits and eat a little more of what you are eating (chicken etc). Sorry if sound like I'm nagging :-)

Please bear in mind that you would normally have had to be eating gluten in the amount of two slices of bread everyday for six weeks for tests to be able to show positive diagnosis - if you have had no gluten in your system for quite a while, the test will be negative. Have you felt any better not eating it?


Hi thank you I appreciate you taking the time to explain all of that - I started with what they later diagnosed with ibs and anxiety in 2007 I lost a ton of weight I was prone to constipation then woke up one day with everything going thru me like bad upset tummy - (within about an hour or so of eating anything at all) if I eat late and go to bed I wake up either running for the loo or with a mouthful of reflux and I vomit food that's completely undigested - wake up feeling sick in the mornings since my last pregnancy morning sickness never left me I do eat but in small amounts I have zero appetite and have to make myself eat now from all the tummy pains I prefer milky tea and sugar as it doesn't seem to give me tummy ache too bad I know when I eat bread I'm worse I get reflux and upset tummy at same time instead of one or other thanks x

I just phoned the hospital for my blood results the secretary is away I was put thru to another hospital - their medical sec has just opened my results made a weird ooooh (not in a good way). Then went upbeat told me I'd had lots of tests hadn't I and that some were still pending that she was emailing them to the consultant who ordered them now and she will call you personally what is my mobile number - I said did they look ok she said she didn't understand any of it - this is the NHS is it normal to have them work this fast/for the consultant to call to say bloods are clear or have they found something? X I know I just have to wait for a call now but I just got extremely nervous all of a sudden xx

I always get any consultants blood test results the next day from my GP practice as they always have access.

Well it seems you have to work on the stomach and see what's going on there as something bothering you. It might be something else but it's best to start with the basics and rule out food intolerances first. You will need to remove foods for long enough to see if it improves as tummies take a while to heal. For example, if I eat gluten, just a tiny crumb, my tummy is bad for days and end up ill for a week so even if you're just eating it for one day a week, this is enough to make your stomach bad all the time.

Many autoimmunne issues such as coeliacs/thyroid get triggered during pregnancy so that wouldn't be unusual.

yes, I know what it's like, I used to go half the day just on milky tea. Try and not get nervous, just remember, even bad blood tests are good as then you can know what's up and you can fix it :-)

Hi thanks for the reply - I need a synacthen test as my cortisol is low on 9am and urine I think too

To update I had an ultrasound on Wednesday I have 3 masses on my thyroid one of which is large and I will hear from the consultant within 7 days what does this mean? Could it mean anything? I've got constant lower back ache thanks

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