Hi everybody I’d just like to ask, if anyone else has been sent for a brain scan because of their symptoms. I was at an endo appointment yesterday and was sticking to my guns that I wanted a trial of t3, she of course was telling me all is well with my thyroid and when I told her my symptoms ( dry eyes, can’t taste or smell intermittently , hair loss, weight gain, brain fog, can’t find my words, emotional) she asked me why I thought any of those symptoms were to do with my thyroid and she’s sending me for a scan
I just want to say by the way my vitD was found to be deficient last November and I was put on a course of vitD 40,000 IU per week for 7 weeks and it has cured my afternoon exhaustion I feel so much better. I am keeping my level up by taking 3000 a day with 120 of k2
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Are you on strictly gluten free diet? Or tried it?
How much Levothyroxine are you currently taking?
It's vital to have vitamin D, folate, ferritin and B12 regularly retested
For full Thyroid evaluation you ALWAYS need TSH, FT4 and FT3 tested.
Can you add your most recent blood test results and ranges
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw). This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Is this how you do your tests?
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
Hi Slowdragon, I have not tried the gluten free I may as a last resort I know it helps a lot of people. I’m on 125 of levo and yes I follow the instructions on here when I have a blood test. Endo has requested everything for thyroid testing and lots of vitamins also. This time I didn’t fast or hold back my dose of levo as I didn’t think I was having a blood test having had one the week prior to my appointment, so I’ll have to see how that affects my results I will post them this time when I get them thank for the info 😊
I asked the endo if I could get the D102 test done on the nhs she said she could not arrange it as there has to be a good reason to request the test, there is no reason to have the test. I said if I got the test done myself would she accept the results she said yes and then asked me how could I possibly get that sort of test done myself 😱 I told her about blue horizon and medicheck she didn’t know about them. She also said there’s no need for a D102 check because if I did have the gene it would have shown up when I was a lot younger (I’m 60) and she said it’s very rare and she would know if I had it from my thyroid test results. I couldn’t answer or question that as I don’t know enough about it. I did ask her how my results would be different. How would she know she said she couldn’t tell me that as I wouldn’t understand and if I wanted to know I’d have to go to endocrine school for many years 🙄🙄🙄
Yes, many years ago, but I can't remember much about it. It was for a suspected pituitary tumour, which I didn't have (although I do have central hypo). These days it would be an MRI. You are advised to take music to listen to according to a friend who had one last year as it is very noisy. can be a bit claustrophobic, too, but they know that and are very nice to you.
I have Hashimotos & am on NDT after 16 years on thyroxine,2 on T3-only.I have had & still get those symptoms periodically & more(eg blurry vision intermittently,tinnitus intermittently)
I was sent for an MRI brain scan because when I get a sinus infection I get agonising pain in my head.Only one or two courses of penicillin touch it & they hate giving me Amoxicillin.I hate taking them,but after being up all night for 3 weeks because lying down causes the pressure build up and what I believe to be referred pain in my sphenoid sinus cavity of agonising severity,I give in & ask for them.
2 ENTs have said my symptoms are not due to a sinus infection.The GP made me have my eyes tested & go for an MRI scan last time.This only happens when I get a sinus infection from a virus.Sinus problems are symptomatic of hypothyroidism(they don't know that,either)
Consultant specialists often know much less than we do,living with this condition,but they do not believe in personal knowledge.They prefer to see us as deluded,neurotic,ignorant.
Have to agree, on your opinion of specialists and that they think of us as deluded, neurotic and ignorant. I’m so glad I’m too old to be considered menopausal or I’d add that too.
I’ve never found my GPs to be all that great with sinus infections, I don’t know why because they are common enough. I think in general doctors really underestimate what it’s like to be on the receiving end of a sinus infection never mind a cynical GP / consultant as well.
I think of this site when I go for endo appointments, people saying keep going etc. You have to be very focused and strong to fight your corner because as you say they think we’re ignorant thanks for taking the time to reply
Yes I had an MRI many years ago because I kept complaing about symptoms despite my in range blood tests. I’ve also had a heartscan because I often have blue/purple lips. In hindsight both seemed like a waste of time but actually it was/is good to know that really there’s nothing else wrong with my except that I’ve been inadequately treated all these years.
Hope it goes well for you, take a friend ask for a mirror ect as I went by myself as I thought it was no big deal but actually I had a panic attack and the staff got very annoyed at me 😩
That was rotten that they were annoyed with you. I feel like you in the respect of it being a waste of time, the endo said with those symptoms it could be something else, She’s right in the fact that she wants to eliminate everything before she finally gives in and gives me a trial of t3. I might not be good on t3 but I won’t know until I try it. I told her I might be dead before she finds if I need it or not 😂 thanks for replying
Yes, I’ve been treated like that for most of my experiences with medical staff! Started when I was 8 and broke my femur. 2mths in traction was no joke for a child and I’m afraid I have no a rather bitter taste in my mouth when someone says they’re a nurse/dr or otherwise 😬
Yes, last month, after suffering what seemed like an epileptic seizure. The scan turned out normal (as did the EEG). The doctors said they think NDT or rather T3 is the culprit and that I should go back on T4 only. They said something rather vague about "hyperthyroidism causing epilepsy"...my FT3 levels were elevated when I was tested, true, so it's likely I need less NDT. But I am not sure I agree with the doctors about needing to go off it completely and back on T4 only after spending ten years on that and feeling much better on NDT for years...I think I just need to fine-tune my dosage and possible go from taking it once daily to twice a day (morning and bedtime). Plus correct possibly low cortisol levels and various vitamin and mineral deficiencies.
Any excuse to demonise medication with T3 in!They always try to blame T3!
When I first added T3 to my thyroxine I took only 5mcgs 3 times a day for 3 days then ended up with a double heart rate which wouldn't stop.After 5 hours the duty GP told me to go to A&E.It stopped after 9 hours.I DID NOT MENTION THE T3(I knew they'd cancel my NHS Rx)Kept in overnight & later given all the outpatient heart tests,when I got the all-clear I went back on thyroxine with T3,but dropped the thyroxine to zero as soon as I could.Later,i was able to take 55mcgs of T3 in one dose.I have since done better on T3-only then NDT than I did on 16 years of thyroxine.Thyroxine gives me ectopic beats(pauses)& episodes of tachycardia.I think my initial reaction to T3 was as a result of my body being starved of T3.The brain needs T3...
This makes me wonder: how many of us have had to lie to doctors because we take a non-conventional drug such as NDT and/or T3...?!
I know I have.
In the past, I have told doctors (as a preventive measure as I knew my TSH would be suppressed) that I was on prescription drug Novothyral. Most doctors don't like T3 any more than they like a suppressed TSH, but at least it would be difficult for them to find anything negative to say about the manufacturer (Merck). I have never mentioned NDT to any doctor except the ones who put me on it.
After switching to Thai NDT (for cost reasons, and after all prescription brands available where I live were problematic due to confirmed or alledged reformulations) I have not told a single doctor about taking it; the few who know I'm on NDT think I am on Erfa.
And I don't think I'm the only patient who has felt forced to lie to doctors. I have done this to protect myself, to avoid unnecessary questions, to avoid having to defend myself for wanting to feel good, and to avoid being referred to yet another endocrinologist to "find the right brand and dose of T4 for me".
Which makes me wonder why we, as thyroid patients not happy on T4 only treatment and a TSH "anywhere in range", should have to feel we cannot tell our doctors the truth...??? After all, who can imagine a cancer patient or someone suffering from high blood pressure or gout not telling his or her doctor the truth about which drugs and supplements s/he is taking...?!
My GP in Cumbria knew I had been prescribed T3 then had it withdrawn.She knew I was buying my own T3 without a prescription.She let me get on with it,even though the lab would flag up my suppressed tsh.She didn't know I had dropped the thyroxine.
Moving to Sussex,I made a BIG mistake telling my new GP I was using NDT.He refused to have anything to do with my treatment unless I went back to thyroxine.I had this response from the endo in Cumbria who was cancelling my T3 Rx,but I was still shocked by the attitude & manner of this GP.
Needless to say I am still on NDT & hoping to avoid that GP,who is head of practice,when the practice amalgamates with another,larger clinic.
Yes I lie all the time! I have my own symptoms of underactive but they’re only looking for the top 5. Yes I have the big one - lethargy but I have fabulous hair, only a a size 12, no brittle nails, minimal dry skin. So I tie my hair up, wear bagging full clothes, no make up ect just so I ‘look’ the part! It’s so ridiculous that they base their judgments on TSH and how you look for an invisible condition! They can’t see the brain fog or the fact that my joints hurt or smell me because I’ve washed so veraciously! (That’s one of my own unique symptoms BO! Gone now that I’m on T3 thank goodness!)
I saw the same endo last October, it was my first time seeing an endo, and she told me I could do with loosing some weight. It wasn’t until afterwards that I though hold on a minute isn’t that one of the conditions of hypothyroidism. I was better prepared this time to fight my corner, actually I feel quite good at the moment but I know I can feel better, so I’m not giving up 😊
I’ve read hundreds of posts on here and Facebook of people complaining about brain fog, so surely the endo has heard of it being a symptom. To be honest when she asked me why I think any of those symptoms were to do with my thyroid, I should have said that’s the reason I was sent to see her, because those symptoms got me diagnosed with hypothyroidism and I still have them. You always find the right answer after the event though 🙄🙄🙄
Which is why I bring in prints from thyriod Uk and have things written down so that they can’t confuse me or fob me off and It shows them that my brain fog is real because I can’t rely on my brain to remember everything! So for instance when I have an appointment I have a little notepad and after introductions I say I have some queries and questions that I’d like to go through with you. Mostly I did this way back when, in the beginning of learning about Hashimotos when I naively thought that my GP would be astonished at how knowledgable I’d become about my condition and together we’d get to the root of the problem of why I wasn’t healthy on T4! 😂😂😂 Oh how I laugh at my naivety now! The GP mostly just told me how irrelevant everything was. Hence why they don’t like me because I’m very Tenacious! Lol ( my friend called me that and I like it sooo much better than stubborn or argumentative 😉)
I nearly used that very word for my behaviour at my appointment on Thursday I even felt a little sorry for the endo she looked quite deflated and resigned to the fact that she had a battle on her hands
I had a brain scan ,sent by private consultant ,as I have balance problems .The good news was that I have a brain! No other problems were found with the brain .Think lack of B12 was the problem.
I’m not ready to try gluten free yet I’m trying to improve with vitamins I’m following Isabella Wentz advice and finding it helpful I’m adding different vitamins each month so I know if any don’t agree with me I like it because she tells you how much of each one to take
I’m not a chocolate and ice cream kind of person I’m a pasta, bread, cheese and crackers and pies type of person 😬 hence my reason for not trying it yet
Oh Lordy yes!! I used to love all that stuff before I was diagnosed. I thought my weight gain was just from 4 kids so I just cut out most carbs and felt so much better. Inadvertently helped myself in the process, I didn’t do it for my thyriod I did it because my arse was following 4 steps behind me 😂
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