My TSH is 5.21. I have low(ish) vitamin d that my doctor gave me meds for that made me worse. I keep gaining weight, another 5kg in two weeks despite dieting. I have a low temperature - always. Constantly have headaches. My hair is falling out, eyelashes and eyebrows too. I have had several fainting episodes. And my doctor said it's all in my head - that i just have a slow metabolism. I don't think he understand that the thyroid really is the metabolism. I have various other symptoms - huge huge list.
Instead of listening to my symptoms and how I'm feeling, he's ignoring my and going off on the "i'm the doctor, i know better" and saying I'll be fine. I feel like death most days, and it's really effecting my studies - I'm a uni student, i can't afford to fail. He's not taking me seriously about my thyroid worries, but is testing me for... wait for it... epilepsy.
I HAVE ZERO EPILEPSY SYMPTOMS
What do I do?
Written by
mittens95
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Mittens95, your TSH is over range and you are hypothyroid which is why your metabolism is slow. Thyroid protocols advise that thyroid levels should be retested 3 months after the first abnormal result to rule out a virus or other non-thyroidal illness elevating TSH. If TSH is still over range on the next test and your GP won't diagnose and treat hypothyroidism, see another doctor at your practice, and if necessary change practice.
How low was your vitD? D3 supplements can be bought without prescription and you may find softgel capsules, spray or drops more tolerable than the tablets you were prescribed.
I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.
I think I'll probably be going to a different practice, since the practice in question has frequently misdiagnosed me on several occasions. I was apparently on the very lowest end of healthy - but they gave me D3 20,000 iu pills one for every day that gave me even more severe migraines than usual. I told my doctor this, but he didn't suggest anything to remedy it.
I don't understand why he's testing me for epilepsy - I've only fainted, not had seizures, so the tests for it seem pointless
Mittens95, 20,000iu daily suggests your vitD must have been low. You could buy lower doses and see whether it is more tolerable, but if not, you'll have to get as much sun exposure as possible Apr-Sept and do it naturally.
Epilepsy can present with fainting and short periods, seconds sometimes, of unconsciousness.
I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.
The results he showed me when I went in said I was only at the lower end of the healthy range though?
And in previous years I've been severely burnt in the sun, whilst using factor 50, and the same doctor had to prescribe me various medications and creams to heal the burns again. So in regards to vitamin D - there's an awful lot of conflicting arguments from my doctor.
The symptoms he gave of epilepsy and seizures, don't match the fainting episodes I have. He described completely blacking out, or losing concentration and awareness of my surroundings. But what I've experienced is my muscles giving up and collapsing out of weakness.
I'm very confused as to why my doctor didn't take my list of approx. 25 symptoms seriously, and said "it's completely normal for young girls"
Some doctors prescribe the "quick" route to raising Vitamin D by using 50,000 IU of D2 rather than D3 (which you can buy in the store). It is NOT the greatest way of upping you Vit D, many healthcare people are against it, using only D3. If I were you I would leave that doctor, never call them again and go somewhere else. Wherever you get your medication filled, ask the pharmacist if they know of a doctor in the area that prescribes Armour. Usually if they prescribe Armour then you know right there, they "think outside the box".
I was first put on thyroid meds when I totally lost it with my GP. He put me on thyroxine to shut me up. I don't recommend it as a course of action, obviously, but it worked for me. Along the lines of "what possible harm can it do to try the treatment and see if it works?"
I asked him when i went in again to review what had come of the blood tests if I could trial thyroid medication since i had so many symptoms. He insisted I've got no such symptoms and that it would be a waste of time and money to put me on the meds. Real nice fella huh? I think I'll go find a better doctor!
There are other testing companies apart from the ones mentioned in the link above. Ask for reviews from people on the forum before launching into testing from other companies though. And do plenty of comparisons of different packages available and the prices charged. Comparing testing companies isn't always easy, and I find it to be a pain.
There is a possibility that your Free T4 and/or Free T3 are very low, since your TSH is over the range. You may have thyroid antibodies, which make people feel much worse. Your minerals and vitamins may be low - it is a common problem for people with low thyroid hormone levels. In an ideal world your doctor would do thorough testing. But this isn't an ideal world sadly.
Before spending a single penny on private testing though, I would see a new GP at your surgery, and change GP surgery altogether if you get no joy. You clearly won't get much help or sympathy from your current GP. If you decide to move GPs try to find out from other people you know in the area which GPs are likely to be a bit kinder.
Another thought - if you have a helpful pharmacist they might be able to suggest a doctor who seems to understand thyroid problems. Tell the pharmacist your TSH and symptoms - they often know more than the docs.
I'll probably take a look and see if my uni has a gp, and go from there. If not, there's a friendly pharmacist round the corner from where I live who might be helpful
Ask the pharmacist if he knows of a doc that Rx's Armour. If so, go to that doc, because if that doc prescribes Armour, then you know you've found a doc that thinks outside the box, unlike all these other so-called doctors that just don't get it.
Do what many here have had to do before you - manage your own health. So many here have a similar story to tell. I was also kept on a high tsh and told there was nothing wrong. Every year i felt iller. Eventually i git smart and ordered ndt online. I now manage my own health, determine my own dose, etc. I now have a tsh in the minus figures and feel better than I ever did when the NHS was mismanaging my health.
Please do not make the mistake i did and think you can educate the nhs: they don't care and nothing you tell them, no info you give them, etc will change that. You need to take control yourself asap.
I will never get back the years of my life i lost thanks to NHS negligence and neither will you - no time to waste.
In my case, apart from mismanaging my thyroid health, i also had undiagnosed PA and coeliac, severely depleted iron and vit D. I had all the typical symptoms but was ignored and treated like a hypochondriac.
None of us here can afford private care, but the fact is, ndt is quite economical to buy online - it's that or have no life. I saw a private gp, which i could ill afford, but in 15 min i got more out of him than i had in 15 years on the nhs, ie coeliac and PA diagnosis + adrenal issues. You cannot put a price on that.
Unfortunately you never get justice, but what you can do is write reviews about your gp online to warn others. Do not do it on the nhs website as gps block negative reviews - do it on google, just use a pseudonym. Trust me, it is very satisfying
GP sounds very unhelpful. We got fobbed off until I wrote to GP with a list of 14 symptoms of hypothyroidism and adrenal fatigue and requested thorough testing (including thyroid hormones, vitamins and minerals and cortisol). We're at the beginning of this journey but I think it's important to have a paper trail of records (remember that it's the GP and not you who writes up the consultation notes).
I strongly recommend putting every single one of your symptoms in writing and demand a thorough investigation of the cause of your ill health. Good luck.
hi! every visit to the gp, i write up a list of my symptoms on paper, and keep a copy of it at home for reference. I even take my temperature regularly for further notes, and a basic food diary. So my doctor can't say I have nothing wrong with me - I have a list dated from a month before my first appointment! i just think the NHS is very uninterested and unconcerned about thyroid worries in general
This only works mittens95 if your GP doesn't screw up your notes and throws them back at you across his desk! That is what happened to me with a former GP. Refuse to see him now - needless to say
I would suggest moving Dr surgery or 'named dr' and/or getting a blood test to see if this helps understand what is going on.
Many Dr treat the patients not the symptoms so you should not have to put up with one that doesn't seem to care or notice that you are having such a rough time
Try to get a class on relaxation (yoga, hypnatherapy, massage?) as well to support whilst all of this is getting sorted out - it seems to take ages.
Good luck and focus on good eating of nutrients too
I gave up with the tests & bull**** endocrinologists this year, & ordered NDT online. I told my GP what I was doing, & he admitted he didn't know much about endocrinology.
My results were always "normal", but I've recently read that TSH is useless in diagnosing secondary/central hypothyroid issues, & I have a pituitary adenoma. Constant headaches are an issue with this, so perhaps a prolactin test might flag that up as a cause of your symptoms. Odd that all the endocrinologists I saw didn't know any of that!
One grain of NDT seems to be right for me. After 37 years of being cold, my morning body temperature has gone up from 35.1 to 35.6 degrees, & occasionally 36 in the afternoon. I've lost a few kgs, stopped gaining excessive weight, & can usually stay awake past 4pm. I now eat 1200 calories a day without worrying about the consequences, & don't put on 3kgs if I overdo it for three days. My fingernails have started to grow almost normally, & I stopped getting sunburn in under 30 minutes. As yet, it's done nothing for my hair.
I think it'll cost me about £110-120 a year as I buy two grain pills, & halve them. It was a bit trial & error, starting with a quarter, then half a grain of NDT, till I found one grain was right. I had a bad skin/insomnia reaction from taking one & a half, & also very bad when I changed NDT brand to one I thought would be better.
I make sure I get enough vitamins & minerals by eating clean food, & making sure I've enough B12 from eating kefir & selenium from brazil nuts. I take Vitamin D with calcium & magnesium, & an iron supplement.
This article is really informative, though I found just taking iodine & selenium wasn't enough for me. my.chriskresser.com/wp-cont...
Yes, incompetence in allopathic medicine is a huge problem. You may end up having to treat yourself. There are sources for NDT or T3+T4 at reasonable price on the web, you could take that route initially. Longrange though, chances are good that your hypothyroidism is caused by Hashimoto's autoimmunity (the most common cause), and you really should have comprehensive testing that includes TPO and TG antibodies. And then be seen by someone with an environmental medicine perspective, who can give you ideas about how to change your diet and chemical exposure, to reduce antibodies.
I was just like you but I stopped taking the Levothyroxine because I am sure with me that's what is making me feel worse, I've been taking it for the past ten years and the last two years I have felt really ill If you read some of other people's comments in the forum some are convinced it is down to medication, obviously it doesn't suit everybody.
Long story short my Doctor was very condescending and said I needed a holiday, it's winter, dark mornings and nights, until I said I've stopped taking my thyroxine and I don't intend to take it ever again, your supposed to make me feel better not worse, I've done my research and I want to change my medication. I am now going to have full bloods on the 18th December not just T3 and T4 his attitude changed when he knew I meant business. I'm sorry to have to say this and I suppose there are some Doctors out there that are not blinkered and willing to listen to their patients, unfortunately, it's a very hard job finding them.
Re visit your Doctor print some comments off this site highlight what you want back up for and go fir the jugular. Good luck
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Pituitary failure 
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