New hi! - and need some help with results

New hi! - and need some help with results

Hi I've joined in the past posted once or twice but have been having an ongoing mystery illness driving me crazy for about 7 years now before then I was a uk 16 and I'm now a uk 6 (initially dropped to 8-10 now can't gain and struggle to maintain weight) I have ibs since then sudden onset I was told at 21 I had pcos couldn't conceive at that time I had high testosterone and fsh and lsh were off - I'm having shortness of breath spells palpitations feeling cold shivery and rigours night sweats overheating in my sleep memory and cognitive problems and pins and needles etc hands and feet im also having problems with my back and neck. I had a hysto and oopherectomy in Jan and a 3cm cyst was taken too - largest cyst I've had removed was 7cm in 2008

Still birth 4 years ago queried thyroid at the time (medical staff not me)

Now as still having symptoms it's all been attributed for 4 years to anxiety my memory and balance is getting steadily worse and I've got a permanent headache this prompts my gp to send for MRI

I went for endocrinologist appointment whilst waiting for result of that (first one after begging for a referral with private thyroid result i got done online at tsh 0.7 t3 and t4 ok

The endoc has taken a load of bloods my tsh is now 0.3 cortisol 9am 267

Endocrinologist told me at this appointment I have a pineal cyst on Mri 6mm

Phoned gp they read out that MRI all clear - phoned neuro they confirmed cyst

Dr begrudging refered me to neuro I go in October!

My gp still thinks I'm making all this up can anyone see anything in my vloods that may help? I have had synacthen now that was ok

Thanks in advance for any advice

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68 Replies

  • I have more blood results but can't seem to add another photo

  • Sorry forgot I'm 36 have 3 children (that I wasn't meant to be able to have with pcos)

  • B12

  • 334 x folate was 4.5 now on folate from dr xx

  • 334 not nearly high enough. I'm sure someone will put me right, folic acid isn't good for people who have low b12. If I were you I'd join the PERNICIOUS ANEMIA UK sister site.

  • Thank you - I queried my serum of 334 but apparently it's fine

  • 334 may be in range but B12 below 500 can cause neurological problems. Recommended level is very top of range, even 900-1000.

  • Thank you my memory if frightening me I have a 1 yr old xx

  • I would do as Miglet suggests and pop over to the PA forum. Without the range it's not possible to see how low your folate level is, but if GP is prescribing I imagine you are folate deficient. You definitely need some B12 supplementation, see what the PA forum suggests, it may be sublingual methylcobalamin lozenges.

  • Thank you - they gave me a script saying it was low x not b12 tho they're blaming anxiety every time I get a new symptom and I know it's not x

  • Oh, they love to blame anxiety, depression, etc. It's easier than working out what's really wrong. Don't let them saddle you with a diagnosis of depression because absolutely everything will then be down to that!!

  • That's already happened :( that's why I'm posting here feel like I'm banging my head against a brick wall x

  • Never ever no how low you feel , don't go crying to the GP, that's all the need, I'm surprised they haven't done post natal depression.

  • I had a still birth so that was when they ramped up from depression anxiety (messy divorce and house sale diagnosis of hereditary blindness for my son) always thought it was when u had nothing to worry about it was called a disorder! Pretty bloody normal to worry in some circumstances)) to generalised anxiety disorder

    So yeah no one takes me seriously anymore xx

  • Yes, my grand daughter died at 6 mth, cot death. Then I turn out years later with long qt syndrome. It's normal to cry, and to be distraught. Some doctors want to treat nature with a tablet. Time and understanding is what is needed.

  • I'm sorry for your loss and exactly x

  • They'll try to give anti depressants, just say no.

  • I've said no then proved it wasn't them (to myself with 6 months off) went back with same symptoms she blames me stopping the meds! 🙈 got 3 kids taking the bloody things to keep her quiet so it doesn't then look like I'm not taking the help "I need" seriously tho I have low cortisol low tsh low blood pressure and low body temp 35.5 this is not in my head - well the 6mm lump they found and are ignoring is but other than that no!! X

  • anti depressants will simply make npmatters worse

    there is some evidence they block the uptake in the thyroid i think some people are more severely affected than others but since most anti depressants are made from Flouride adding toxins to the body is crazy be very very sure you are not using aluminium or non stick or foil cookware

    your symptoms and low temp still scream hypothyroid even with the weight loss

  • Sorry for the rants xxx

  • It's not, it's ok for uk ignorant doctors but not us. You need to be optimum, not ok

  • I had 7 years on Cytalapram, I wasn't depressed, a phsychiatrist said so and they still Insisted that was what I needed

  • Yep - I'm just taking the bloody things so they can't then say well if u take these u will feel better - I'm taking them to prove it is physical not mental if that makes sense they make absolutely no difference stopped them for pregnancy too

  • I wouldn't they're he'll to get off. Look it up on Google.

  • I can actually remember at 22 (I'm 36 now) my bloods when I was pregnant the nurses all commented on how good my iron level was all my levels were top end of normal and my dad gives blood for prem babies as he has more platelets than most or something - I've always had optimum results back then now they're just scraping good enough or they're low and I can feel myself getting weaker month by month

  • It's not, you need optimum not " just good enough"

  • Ask for B12, folate and ferritin blood tests.

  • Thank you b12 is/was 334 they said it's fine x folate was low now on prescribed folic acid x

  • without free t3 its hard to know but t4 is low along with TSH if t3 is also low i would be thinking CENTRAL or TERTIARY hypothyroid

  • I've got a private result from 6 months ago but tsh is 0.3 in latest rounds in those it was 0.7 xx

  • And thank you x

  • are you using aluminium or non stick coated cookware or foil is your water supply treared with alum or aluminium or flouride both can cause horrendous symptoms and weight loss

  • Your T4 is a little low, so might be worth a look at T3 levels for a more indepth look. have you also had Vit D tested and iron (ferritin).

    I would imagine your likely issue is your stomach and with "IBS" and massive weight loss, and nutritional issues, I would highly suspect coeliacs. However, I saw you tested negative for coeliacs antibodies but this blood test is unreliable and can only be ruled out with biopsy/endoscopy. People with IgA deficiency can also produce a false negative test for coeliacs which can be checked with Total serum IgA: However, this would not rule out NCGS which I have been diagnosed with and nor would it rule out gluten ataxia which would cause balance issues etc and I would suggest you go gluten free for at least 3-6 months and must be 100% gluten free and see if things improve with your stomach if you cannot find a solution soon. Everything is worth a try even if just to rule out but gluten is most likely culprit.

    If you have no luck with this, then you can try an elimination diet to rule out intolerance to other food such as dairy and if still no where, maybe try and get a referral to gastroenterologist for further investigation - I do not believe that something like IBS actually exists - I believe this is only the word they use when you have stomach issues and they can't figure out what it is so keep searching :-)

    I must admit, I am not up on my cortisol knowledge so maybe someone else will comment :-)

  • This is a list of typical symptoms of coeliacs:

    Possible symptoms may include:

    severe or occasional diarrhoea, excessive wind and/or constipation

    persistent or unexplained gastrointestinal symptoms, such as nausea and vomiting

    recurrent stomach pain, cramping or bloating

    any combination of iron, vitamin B12 or folic acid deficiency



    sudden or unexpected weight loss (but not in all cases)

    mouth ulcers

    hair loss (alopecia)

    skin rash (dermatitis herpetiformis)

    tooth enamel problems


    liver abnormalities

    repeated miscarriages

    neurological (nerve) problems such as ataxia (loss of coordination, poor balance) and peripheral neuropathy (numbness and tingling in the hands and feet)

  • Yep x also same symptoms for low cortisol I've had so many tests all come back off but not quite enough to b a specific thing but then this is the first time they've taken me seriously and they've found low cortisol low folate low tsh and a cyst in my brain - still think I'm just anxious! Well yes I'm starting to get that way do I need to think about private drs? And how much are they?

  • I agree 100% all symptoms started at once suddenly bowel really bad and I know it's not ibs it's whatever's going on they ruled loads out 8 yrs ago never had a camera etc just blood tests

  • Okay, well ceoliacs can only be ruled out by biopsy, even a camera wont see the damage but if they wont give you a biopsy with an endoscopy, then at least on the food side, you can determine this yourself with trying the GF diet as the most likely considering your symptoms and elimination diets for anything else like dairy and so on so you don't need a doctor to rule out any food issues as you simply remove and see if bowel improves. There are other stomach issue too such as chron's and colitis so they should have really stuck cameras down each end (sorry to be blunt) and investigated this ages ago anyway considering it all started with stomach issues. Try and make an issue of this next time you see them and get referral to gastroenterologist.

    With low cortisol, then make sure they look into addisons disease properly :-)

  • They ruled out addisons with synacthen last week they said x I will look into diet and yes will push as my dad has a genetic thing called Barrets esophagus or something - and his dad died from stomach cancer :/

  • Okay good, then go with the stomach. Interesting both of those issues are more likely in those with coeliacs and are complications of untreated coeliacs

  • Ok thank you that's interesting x

  • I drink bottled water for that reason and I don't cook with aluminium I've just moved tho from being next to a massive wind farm x

  • Did they test Free T3? You said there was another sheet of results? To post those, you'll need to start a new post.

  • I have posted 2 other pics somewhere xx

  • Thanks, found them! No, they didn't test FT3. Which means it could very well be that you're undermedicated. How much levothyroxine are you taking? Or are you not on thyroid replacement hormone?

  • Actually - just guessed that you probably aren't on any thyroid meds...

    Have you ever come across this in your hunting around? Thought it might be interesting...

  • Thank you! See I've read that and I do have symptoms don't know how I go about proving that to my gp tho seeing as they only found it because I presented with those symptoms but then gave me all clear!

  • Not taking anything just have dodgy blood results consistently xx

  • Hello lostmylogin- sorry to hear your symptons at this time. I agree w/everyone & especially Saggyuk & if I may, one step further... Start making or buying BONE BROTH it helps heal your gut which helps everything in one way or another. Most of us have leaky gut. You can use a crock pot & let it cook all night ( or day) on low. All it is , is basically iovercooked chicken soup. If you start w meat on the bones, at about 5hrs . You should remove the meat to use in a dish for some meal ( otherwise its too dry/disintegrated) . REALLY WORTH IT!! HUGS🌈

  • Thank you x

  • You're welcome! I had another thought & thank goodness I got an email today which explains all I want to say but cant easily -

    I personally 5 yrs ago did a jump on my intervention w/diflucan 2x 4 days apart as I was a chronic white carb eater which feeds yeast. Take a look & hope it helps :)

  • And recurrent thrush infection was one reason for my hysto I've looked at this before may well be on to something

  • I want you better ( you mentioned small childen )

    so hope its a start - we all deserve a nice life!! 😊

  • Thank you yeah 3 kids from 2-13 oldest is blind need to be around a long time yet :) xx

  • And you will! 🌈 I started my journey (aside from feeling terrible 5 months after my mom had passed- my father had already passed in 1998 & were wonderful parents ) I had hopes being 45 to still have a child, didnt happen but BF still with me and bottom line -I have improved. I still have high thryoid antiboies but have no doubt , cleaning my diet more & consistentlywill turn the ship around. You will too!!!!!!

    Its late now for you my dear, get rest ( Im in the US) thank you for fast reply - Tomorrow is a new day!!😊☀🌺

  • ❤️ thank you u take care x

  • 😊❤

  • Just wanted to say hello & hope life is treating you nicer today - I meant to mention the other day ( but wanted you to just rest as it was late) I can understand your strives as my only sibling, a brother , he survived an anuerysm rupture in 2014 & 2 brain surgeries. He has 4 children , the second oldest is a boy & he has Angelmans' Syndrome so I applaud all you do. Take care 😊

  • l dont know much compared to regulars on here. You may have Low Cortisol - as l do. Think it shd be 400 or over but check. l am having battle with gp and useless Endo who now says l have ME after a lifetime of female hormonal problems and ghastly facial hair and no energy. Look on Pituitary Foundation or speak to their Helpline. They are amazingly helpful. Its a problem area that shows far less than actual Thyroid. Many on here say Synacthen test useless - as after that they said l was ok despite the low Cortisol. Also we need to see Endo at a Centre of Endo Excellence as l was sent 2nd rate place

  • Thanks they said it was really low then once I had synacthen said that was normal I'm waiting for a letter now from endocrinology I've only met her once and before she ran bloods she wasn't really convinced I needed to b there x

  • Same here. lf you look up Low cortisil you can see it is caused by Pituitary etc. They were so good and lovely guy said: doctors have very fragile egos and you need to go softly softly and say you need their professinal help ....... Said l will have to practice for a week first. There is only one company that supplies the hydrocortisone replacement needed he said.

  • PS You are entitled to Second Opinion and make sure you go to a major Endo Centre in big recognised hospital

  • Ok I'm thinking this might b the answer I've just moved from one side of county to the other back to where I had a brilliant dr trouble is all lists are closed so I'm currently between actual gps and I need my hrt script doing soon too

  • Thank you

  • That's tricky, do hope you get back with the good one. Wd be a good start

  • l fail to understand how - if we have a 'low cortisol' blood test - that it can be ok after this stupid synacthen test, which made me rough for 5 days after. No matter what they did then with pumping in ?ACTH the fact still remains the blood test was far lower than should be, and has not been put right. Normally you dont even get that blood test. First time in decades for me

  • I know right! But from what I'm reading it points to pituitary issue not adrenal x I've got a cyst on my pineal gland next to my pituitary and apparently it's not relevant! 🙄

  • Could well be; make certain you get to a good experienced Endo

  • low TSH and low freet4 indicates CENTRAL HYPOTHYROID this is different from more common Primary hypothyroid where TSH rises

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