Just back from an awful experience at the doctors - Thyroid UK

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Just back from an awful experience at the doctors

Carpsy profile image
22 Replies

Hello.

A few days ago I made a topic listing my thyroid results and symptoms. Today I went to see a new GP as my two previous ones basically have told me that it's all in my head and i'm a hypochondriac.

I went in there with a list of my main symptoms wrote on a piece of paper -

facial flushing

chronic fatigue

need naps in the afternoon

wake feeling tired

heat intolerance (always sweating even in the winter)

constantly have a 35.xx base temperature

facial swelling (moon face? can't see my ears from the front on)

dry mouth

dry eyes

sensitive to light

dry skin

dry itchy scalp

chronic itching

alcohol intolerance (IBS, facial flushing, palpitations)

He took the list from me and quite literally started crossing some of the symptoms out because 'he wasn't worried about them'. He crossed out the 35.X temperature I have every morning and said it means nothing. He also crossed out the alcohol intolerance and the symptoms that accompany it because 'they're just normal'.

He then asked me 'what do you think is wrong with you?' i said that i wasn't sure and then explained to him that i had a private thyroid panel done and shown him the results. I said they are all in range but my T4 and FT4 are at the bottom end of the range and I have been researching it and apparently they should be at the upper end of the range. He dismissed me so quickly. Took one quick glance at my results and said 'nope they are fine, as long as they are within range they are fine.' I said 'are you sure? I've done a lot of reading lately and I think they should be a fair bit higher than they are' - At this point he seemed a bit annoyed with me for having the audacity to even question him and just dismissed me again - 'no, they are fine' he said.

Then I said is it possible to have some more bloods done such as vit d, b12, folate, iron and ferritin. He said no because all of my previous full blood counts came back fine so if I was deficient in any of it it would have shown up before (which doesn't make sense because it's a completely different test).

I then asked if it was possible to have the 24 hour cortisol test just to rule it out and because i'm severely intolerant to the heat and his answer was 'no it'll be a waste of time as it won't show anything'

At that point I just wanted to punch him in the face I was so angry. I said 'so what am I supposed to do? I've been living with this for 7 years now! I have a 3 year old son who I barely have the energy to play with anymore'

He looked at me and said 'well i'm sorry but i'm going to have to backup what the other doctors have told you, I think you have serious mood disturbances (!) - but I will test you for the folate, ferritin etc if it makes you feel better'

I just muttered 'thanks' and walked out.

Why are they so bad? it's a scary world that we live in where our health is in the hands of these incompetent fools. I think i'm just going to wait for my vitamin results and then just self medicate as I don't know what else to do. Is it worth wasting my time to find a decent GP on the nhs or should I go private? Do private doctors tend to listen to our problems and our symptoms more? I have seen almost every GP at that surgery now and it's like they are all familiar with me now and they all seem to think i'm crazy and it's all in my head. Always wanting to throw anti-depressants at me.

Does anyone know of any decent doctors in the Gloucestershire area? I feel so ill right now it's so hard to try and keep searching and to not give up when it feels like they are our enemy.

Here are my thyroid results just incase anyone has any information or advice on them -

TOTAL THYROXINE(T4) 84 nmol/L 59 - 154

THYROID STIMULATING HORMONE 1.37 mIU/L 0.27 - 4.2

FREE THYROXINE 14.5 pmol/l 12.0 - 22.0

FREE T3 5.5 pmol/L 3.1 - 6.8

IMMUNOLOGY

THYROID ANTIBODIES

Thyroglobulin Antibody <10.0 IU/mL 0-115(Negative)

Method used for Anti-Tg: Roche Modular

Thyroid Peroxidase Antibodies 5.0 IU/mL 0 - 34

Method used for Anti-TPO: Roche Modular

---------------------------------------------------------------------------

I have a sinking feeling that the vitamin/mineral tests are going to come back fine and then I'll just have no idea on what to do next. I suppose i'll have to order a private cortisol test. All of these symptoms came about 7 years ago after I took roaccutane fwiw.

Thanks.

Recommendations for doctors via Private Messages please, in line with posting guideline #24, thank you, Clutter.

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Carpsy profile image
Carpsy
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22 Replies
Neijam profile image
Neijam

I can tell u that u r not mad, the bloods show u are at thw bottom range and you would benefit from thyroid hormone ,if u have researched ,u will already know lots and lots of people have came up against the same probs.Firstly ,the bloods he done fir cortisol are no good as they just show if u r producing cortisol .You need to get a 24 hr saliva done to determine when u are low or high.You should also get a red cell magnesium test as the ordinary blood test only shows if u have enough in plasma .only 1% if ur mag is in the blood and its last to give up mag .Your body could be completely deficient of magnesium but your blood can show in range.You need to get the tests done private as nhs dont do them .Like so many others it like hitting ur head off a brick wall with docs.If i was u i would ask him if itss poss to start u in a low dose and check from there.

shaws profile image
shawsAdministrator

I don't like to tell you, but you may well be right about the drug - again you've come across ignorant/unknowledgeable doctors who prescribe products and patient may be left with severe consequences. Of course, drug companies don't like to publicise that there may be adverse reactions but how many, particularly teenagers, have acne and obviously want treatment but parents wouldn't want it to harm them in anyway.

This is an extract from a link:-

Accutane and Sotret contain parabens, which are chemical preservatives known to display estrogenic activity and mimic the body's hormones. These chemical-disruptors may interfere with the body´s endocrine system: the adrenal glands, the pituitary gland, the hypothalamus (in the brain), the thyroid, the ovaries and testes, the pancreas (which secretes insulin and regulates the level of glucose in the blood), the stomach, the kidneys, the skin and virtually every body system.

isotretinoinsideeffects.com/

Doctors are unaware that the TSH level they use has never been brought up to date with the result that so many are suffering with clinical symptoms - dismissed as 'all in the mind'. Doctors are very unknowledgeable about thyroid glands, which is the Master Gland of our bodies and they cannot add up 'two and two'.

You have obviously been researching your symptoms and have come up with the possibility of a thyroid gland dysfunction. I doubt any NHS doctor would treat you and I know that one of our private doctors would have treated people despite their TSH with a trial of thyroid hormone. Unfortunately, for many of us, he died of a heart attack due to appearing before the GMC over ten years.

Another doctor resigned his medical practice as he was being persecuted by the GMC for treating patients without relying on the TSH. He still has a practice in which he treats patients holistically but cannot prescribe but can advise.

If you email louise.warvill@thyroiduk.org who has a list of private doctors and one may be near but you should enquire with the practice if you would be treated with your blood tests results so you don't waste your money.

Clutter profile image
Clutter

Carpsy, email louise.warvill@thyroiduk.org.uk for recommended private GPs.

Your thyroid blood results look good and don't indicate hypothyroidism although some of your symptoms do. The vit/min results may give some clue to some of your symptoms so please post them with the lab ref ranges when they're available.

rosetrees profile image
rosetrees

Carspy - I'm going to send you a PM

Carpsy profile image
Carpsy

Thanks for the advice guys, will email louise in a bit. My full blood count came back normal but i will post it later anyway just to get an actual informed opinion. Well i say it was normal, everything except creatinine which was classed as high. It was 112 and the range was (X - 103). Is that indicative of anything? Never even seen it mentioned on here before.

in reply to Carpsy

medicinenet.com/creatinine_...

Could be your kidney function that is causing the problem perhaps?

Carpsy profile image
Carpsy in reply to

wow i didn't even think creatinine was that important as i've never heard of it. has anyone else on here had issues with it? (if they read this of course). i have literally all of them symptoms on that list -

feeling dehydrated,

fatigue,

swelling (edema),

shortness of breath,

confusion, or

many other nonspecific symptoms (for example, nausea, vomiting, neuropathy, and dry skin).

not sure if my puffy round face is classed as edema. also really annoying how the GP claimed my FBC came back 'perfect'. i guess he's just an idiot. as soon as he said 'your thyroid levels are in range therefore they are fine' i could just tell i needed to see a different GP.

thanks for the link twitchy.

in reply to Carpsy

That's okay. Just to give a different perspective I really like my GPs but recognise they are tied to the NHS/ Nice guidelines - which have some pretty huge limitations. I do agree it's bad if they just dismiss you but they are at least trained to identify kidney disease and how to read blood tests for serious conditions including Thyroid disease. Some are pretty useless or get it very wrong so if you really feel this may be the case then you should write to the practice manager or if you can face it - challenge them face to face. I did this once with a GP and it turned out that the reason for his nastiness was that his wife had just walked out on him for another man! Even the nice woman GP tried to tell me recently that I was being a health obsessive when I told her I had heart palpatations. I looked her in the eyes and asked her if she was saying I was a hypochondriac?! She back tracked like mad and it turned out that I did have a type of arhythmia which means my heart sometimes skips or gives me extra beats.

My advice would be to do your own research as much as you can, get mineral and vitamin tests done yourself that they won't do such as B12 and Vitamin D, focus hard on foods that make you feel better or worse and on getting a bit of exercise everyday to keep muscles strong if you don't already. If you can find a GP you trust a bit more then you can perhaps start afresh and just explain the most severe symptoms and how they are impacting on your life.

Hormonal changes can also cause the symptoms you describe - I know that every symptom on your list plus several others (severe eczema and alopecia) ruled my life when the kids were little but now, post menopause, these symptoms rarely affect me although I have gone on to develop another serious autoimmune disease (RA).

faith63 profile image
faith63 in reply to Carpsy

Creatnine will be high with Hypothyroidism and low with Hyperthyroidism.

I'm afraid to say that in my experience GPs are thoroughly incompetent and don't give a stuff about their patients.

If it were me, I would write a letter of complaint to the Practice Manager stating that the GP had a poor attitude and has done nothing to help you regain your health. If nothing else, this complaint would get brought up at his revalidation and he would have questions to answer.

Your best bet is to avoid the NHS, read up as much as you can, take matters into your own hands and consult with a private doctor.

GPs are getting away with providing a shoddy service as they're unanswerable to nobody. In my experience the GMC were not interested in my complaint against 3 GPs despite my taxes going towards paying GPs wages. It's shameful.

You have to believe that you'll get better. You can but without the NHS.

Carpsy profile image
Carpsy in reply to

yeah i still feel so angry. it's just outrageous how they are allowed to get away with it. claiming i am fine because my blood tests say so and that i have mood disturbances (what the hell does that even mean?). think he was just trying to say i'm an absolute head case in the nicest possible way.

i am determined this time though. i've suffered for seven years already and i'm only twenty five. it's just getting progressively worse and when it becomes hard work to play with your three year old son i think it's time to find an answer.

There's clearly something not right. All very well for the GP to say it's not your thyroid - it would be great if he could suggest what it might be instead. This whole "it's all in your head" thing drives me loopy.

I have another possibility for you to consider. You took the roaccutane for acne, right? So why was your acne so bad? Have you ever considered gluten intolerance?

I've been reading up quite a bit on it the last few days as I've recently realised bread often makes me ill, sometimes violently. The symptoms of gluten intolerance and coeliac disease have a lot in common with thyroid problems.

Carpsy profile image
Carpsy in reply to

yeah that's the worst thing about it all really. he said my thyroid was fine and then just insisted i had mood disturbances without exploring other avenues. i personally think he knew what he was going to say to me before i even stepped foot into his room. after a couple of other GPs at his surgery calling me a hypochondriac it was always unlikely that he would go against them.

yeah i took roaccutane in 2007 for my acne, biggest mistake of my life. i've no idea why my acne was so bad but it was pretty severe. gluten intolerance has never crossed my mind to be honest. i did consider food allergies a few years ago but i remember thinking that i always feel ill even if i go several days without a certain food anyway so i didn't pursue it.

god i hope it isn't an intolerance. there are so many diseases linked to thyroid problems it's already driving me crazy.

in reply to

In the 21st century you would have thought that these sexist attitudes would have disappeared. Would a GP say that to a man? Of course he wouldn't.

I really do wonder if that's the real reason why thyroid sufferers are left to, well, suffer. If it was mainly males that were affected, would the treatment be any different? I believe it would be.

Carpsy profile image
Carpsy in reply to

sorry cinnamon but i'm a man. well i'm a male but i don't feel like a man right now. feel so helpless and weak. i have to work part time because i don't even think i could get a full time job right now to provide for my son because i know i'd probably end up quitting. i feel so useless.

in reply to Carpsy

Carpsy - I am so sorry for my mistake, I presumed wrongly.

It must be a big struggle for you with such a young child. Would you be able to see a private doctor such as Dr P?

GPs frequently stick together so you may be better off changing surgery. We don't expect to have battles when we consult with GPs but many are ignorant of thyroid matters and definitely don't like informed patients.

I wish you well and hope that whatever route you go down brings good results.

TSH110 profile image
TSH110 in reply to Carpsy

I am so shocked they are treating you like that - they have clearly colluded. They should be investigating your symptoms and seeking the cause and a solution. It is medical negligence. and bullying. I hope you find a decent doctor fast. We tend to think it is because we are female we are being patronised but it is an eye opener to discover that their arrogance knows no bounds.

faith63 profile image
faith63 in reply to Carpsy

At least your doctor isn't Sexist. He treated you just as badly as he treats his female patients! Really, i do understand how you feel.. I have Hashi's and have been ill for years and my meds never work.

sue11 profile image
sue11 in reply to faith63

I have hashimoto,how do you feel with,a bad day,only won't to understand if l feel on a bad day to companies,hope you don't my nd trying to this

Thank you

Sue11

TSH110 profile image
TSH110 in reply to

I quite agree cinnamon_girl the attitudes are medieval like we are a bunch of crazy old witches or something - not burned at the stake but left to suffer so many unnecessary symptoms with woefully inadequate treatment and support for this awful condition.... but I am shocked to discover that men are getting the same patronising arrogant treatment. They seem to see patients as some sort of lesser life form giving them hassle. While they grab their £100000pa pay cheque we provide for them. Pity we do not have the power to sack the incompetent ones. They would soon change their tune.

JoyceA profile image
JoyceA

Your GP sounds like one of mine. I almost thought it might be the same person as I had that exact same scenario with my GP months ago. I haven't been back to the surgery for a while now so who knows if he's moved to your surgery :-)!!

I had a similar situation with numerous symptoms and all my results being within the normal range. I was so ill I stopped working for a few months and then had to go back part time as I couldn't not work. In desperation I went to see a private doctor. He diagnosed me with adrenal insufficiency and hypothyroidism. I started on a treatment course with his guidance and although I'm not yet fully back to normal, I feel a lot better and have been able to return to work full time. I'm still working to get to the right dosage of medication for me and with the doctor's help and the knowledge I'm gaining here and from books, I'm more confident than ever.

I know how frustrating it is to have people insisting your results are "normal" hence you're well when you feel otherwise. We're all different and you know your body best. There are some really nice and knowledgeable people on here and the knowledge I've gained from them is amazing. I also had to read some book to help me try and understand what was going on. I found "stop the thyroid madness" by Janie Bowthorpe and Dr Peatfield's "your thyroid and how to keep it healthy" very helpful to me.

I hope you get the help you deserve soon.

i used roaccutane too about 20yrs ago... i too am sick of being told i am depressed or hypochondriac... i am ill and my meds dont work, its like platting fog, gettin a result out of a doctor for being hypo... i think i will point him to this site... he might learn something!

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