Very confused, I have many symptoms of Hypothyroid but GP would only do a TSH blood test, would not do 3&4 as said not necessary. Result was 3.08 and he said that that was normal and I'm ok and to go away, lose weight and stop worrying. I feel rubbish, is he right?
Advice please: Very confused, I have many... - Thyroid UK
Advice please
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Messyrooms
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Messy rooms,
Welcome to our forum and sorry to hear that you are not feeling well.
This is a very common problem caused by doctors believing the
lab ranges set in their doctor manual guidelines, which are wrong.
Unless the TSH level is higher than 10 your doctor won't recognise your plain hypothyroid symptoms as being caused by an unmedicated thyroid condition.
Hypothyroidism can be caused by a number of hormone imbalances and to get a true diagnosis it is imperative that you have tested TSH, T4 and T3.
Explain to your doctor how ill you feel and would like all these tests to be conducted in order to eliminate a pituatry or conversion problem.
Sometimes if they think you are knowledgable on your condition, they are more inclined to test as don't have an argument to back up their thoughts.
You should also ask to have your Vit B12, Vit D, folate and ferritin tested. Suggest to your doctor that these four nutrients are vital for thyroid health and have often been depleted by the time a thyroid condition is established.
If you have a thyroid issue it will only get worse if you are not medicated so if you have no joy with your doc, you can always be tested privately. Details are on the Thyroid UK website with discount but this would still be quite costly.
Any blood test results post on here together with ranges (numbers in brackets) so members can comment. Do not except a "normal" result from your doctor as his normal could be below what is recommended for people with thyroid issues.
This link below gives a good explanation of your problem.
I hope you have more luck with your doctor.
stopthethyroidmadness.com/t...
Messyrooms• in reply to
Thank you for your prompt reply, it has been very helpful 
shawsAdministrator
Sorry you are hitting a stone wall with your GP. If you request tests (you should) add iron to them as, if you are hypo, your iron needs to be good.
Your plight is very common due only to the stupid guideline which says to diagnose upon the TSH alone. Sometimes hypo members' TSH doesn't go very high at all.
We have to read and learn about the thyroid gland/treatments as some will suit and some may not. Some countries prescribe when TSH is about 3 but the UK is the highest in the world (so I believe) and don't care that people are suffering badly
and how much their life is affected. I think it should be mandatory that only doctors who have hypothyroidism/hyperthyroidism should be consulted by people whose doctors wont. Neither are doctors trained in clinical symptoms and therefore don't understand or cannot diagnose upon the 'look' of the patient like doctors did before the blood tests were introduced. Due to not knowing the symptoms plus, if undiagnosed/underdosed we can develop other more serious disease, i.e. heart etc.
Some good and informative links from Thyroiduk.org.uk:
thyroiduk.org.uk/tuk/ - on the left-hand side choose your topics.
thyroiduk.org.uk/tuk/diagno...
thyroiduk.org.uk/tuk/testin...
If you can afford it you can have a private blood test particularly Free T3.
There are labs who give a discount when Thyroiduk is mentioned or a code given.
thyroiduk.org.uk/tuk/testin...
thyroiduk.org.uk/tuk/about_...
thyroiduk.org.uk/tuk/about_...
Thank you, it's nice not to be treated like a hypochondriac
I'm sorry you are not being taken seriously. It is a very frustrating situation that a lot of people find themselves in.
There is a lot of good information above but I would add that it is best to get your thyroid tested first thing in the morning before food as this gives a better idea of your true TSH level. It is likely to be slightly higher in the morning.
Ask for a repeat test after a few months if you do not feel any better. They may or may not do it but they should always test at least T4. Here are the NICE guidelines that state this and the reason why.
cks.nice.org.uk/hypothyroid...
I hope you find a doctor to take you seriously soon but in the meantime we are here to support you.
Carolyn x
Thank you Carolyn, I appreciate your reply very much
Messyrooms, Don't make any attempt to lose weight with a TSH of 3.08 -- which is hypo, although your doctor doesn't know it. Restricting calories and over-exercising could just make your thyroid condition worse and make you put on even more weight. It has nothing to do with what you eat, but with your lowered metabolism caused by a failing thyroid and a TSH of 3.08!
Your doctor obviously knows nothing about thyroid, so is there another one you can see?
I'm going to try and make an appointment tomorrow to see a different doctor and I'll push for another blood test. I did ask initially for a Free T3 and 4 test with antibodies (as I had done a little bit of reading) but my GP said there was no need and in his opinion I was fine.
Considering I specifically said I was concerned about hypothyroidism I was surprised at his comment mainly because he did not ask me any questions at all about my general health or well being, he merely took my blood pressure (110/65) and my pulse (50 bpm).
He merely see's that I'm overweight and bangs on relentlessly about the risks of diabetes. I am not diabetic and my fasting glucose was 4 mmols!
I could cry with relief that people on here are so supportive, so thank you
You're more than welcome! We, here, know what it's like and the difficulties we can face when trying to get well. Doctors, in general, are totally ignorant about thyroid, and have no knowledge of symptoms. I think we could all write a book about that!
Lots of luck in getting your labs done. I'll keep my fingers crossed for you.
Your pulse of 50 is also quite telling. That is rather slow - and again indicative of hypothyroidism. It's certainly indicative of a slow metabolism (which is effectively the same thing as hypothyroidism) - it really isn't any wonder that you're struggling to lose weight.
GG..when i went hypo, i felt terribly ill, but was able to force myself to exercise, 7 hours per week and i did keep gaining at a very rapid weight. I wish i had the energy that i did then.
I Don't believe in forcing oneself to do anything. Follow your body, it knows best.
You are so right! My doctor, of course, was saying i needed a dietitian and to exercise more, so i did. Funny how i was thin and fit, for 47 years before this happened. I gained 11 lbs. in 1 week and she said it was my diet?!!!!!! I get so mad when i think about it!!
Did you see where we gave nearly the same advise? So funny. I didn't read the other responses before i wrote in.
Can't really add to to the other posts but wanted to say welcome and that we shall help all we can. You have already taken an important step by joining us so you are no longer alone and we do understand what you are going through. Also on the Thyroid UK site is a list of symptoms, it's very long but don't worry we all get different combinations but it might be an idea to take a copy, date it and tick any symptoms you have. There may be ones you haven't connected as being thyroid related. This is also something you can show you GP as evidence. It might convince your doctor to let you have a trial dose at some point. Read up all you can, knowledge can be power, and ask if there is anything you don't understand. Many doctors don't understand or even know the signs and symptoms, they are too reliant on the lab values and TSH doesn't help in some situations.
Thank you, that is good advice and I will act on it
Thank you
In hindsight - well I would change GP or go to another in your practice and tell the 'different' GP how ill you feel. We all know now in Someret that GPs do not have the 'expertise' to script T3 so how can they have the expertise to diagnose it's lack???
Before l was diagnosed my pulse was low and dropping in the night to 29! I often fainted in the night if I got up but my DR said it was nothing to worry about. This went on for around 10 years with various docs both here and france until eventual diagnosis. This has never happened to me since taking thyroxine so very obviously a serious symptom , not to mention that after each fainting attack it took 2 days to feel like I could function again.
I'm overwhelmed with the messages of support from you all and have to admit that it has given me the courage to seek the opinion of a different GP at the practice and tell them straight. If they won't listen, I will find the money to be tested privately and if the results prove positive for hypothyroidism then my GP's had better brace themselves (and I will tell them this).
For years now I have been in pain, exhausted, struggled to lose weight and felt more and more low as the years went by and this was all put down to my being overweight. No-one believed me when I told them how hard I tried to lose weight with very little reward for my efforts and the gym nigh on kills me, but I keep persevering because I have been blaming myself too.
Maybe now, I've found the answer and can get well and move forward.
Thank you so much
Well said! Knowing that you aren't alone is a great confidence booster! Good luck!
I can totally empathise with you. I am still battling for a diagnosis (my TSH was also over 3 to start with and higher at each subsequent test) and am fed up. It particularly annoys me that when I started to gain weight a few years ago, and told my practitioner that my diet/exercise had not changed, they completely ignored me (clearly I must have been lying) and just told me I needed to eat less and exercise more. If they had listened to me then, things wouldn't have got as bad as they have. Don't give up. You have a right to be well, and at least here you will find support from people who understand exactly what you are going through.
Make sure you request thyroid antibodies..there are 2 kinds. Some people might have normal labs, but are quite ill if they have Hashimotos and should be treated anyway. Be aware, that the standard treatment is Levothyroxine and it often doesn't work well and the doctors don't know how to administer the meds correctly. They will still look at TSH to determine a dose and leave people ill. I think most people on this forum have been through this. I would suggest the stopthethyroidmaddness website as a good place to start, but i would not believe their insistence that you need Desiccated Thyroid to feel well..it made me worse. The website dose a good job of explaining it from a beginners point of view.
sometimes I get so mad when I hear this, 23 years ago I was told the same, it went untreated for 10 years and then badly treated for another 10 years, eventually I managed to get a doctor to look and feel my very enlarged thyroid gland, 6 weeks later it was removed with cancer in a nodule, I wish I had known back then what I know now, I would have asked the first doctor if he would mind me sueing when the untreated thyroid gland turned cancerous. When are the medical profession going to wake up and treat people properly. They will treat the symptoms with dangerous anti-depressant drugs based on how we feel with no blood tests, but will not treat thyroid symptoms unless they perform a perfectly useless blood test. Rant over - so hope you get some help soon, (( hugs ))
I can well understand your frustration as I went to see one dr at my practice and he basically told me to exercise more! I made another appointment and got in to see a different doctor who is now going to test me on everything she can and is much more sympathetic to thyroid issues - it's a step in the right direction, be persistent, keep reading and don't be fobbed off!
I have an appointment for this Friday with a different doctor (I've met her once for my daughter and she was lovely) so fingers crossed
I don't know as much about the Thyroid tests as most people on this site, but just the fact that you are feeling unwell is a sign that all is not right and you must keep telling the Doctor how you feel and, if necessaary, go to another Doctor in your practice. I had been feeling awful for months and although sympathetic, my doctor didn't know what was wrong. It was only after further blood tests that it was found I was taking a too high a dose of Thyroxene which made me lose over a stone in weight. I am now getting back to my normal self, but only just. I'm afraid that you will have to pester and tell them exactly how you feel.
halerm
NO! he is definitely wrong. You need TSH, fT4, fT3 at minimum.
How do I know? I've lived undiagnosed with an low thyroid most my life and eventually diagnosed with thyroid cancer at 29 years old. I have spent the last 7 years researching and understanding the topic and learnt what to do and what not to do. The reason why I went undiagnosed all those years (despite my many symptoms), is because my many Drs and Endocrinologist (thyroid specialist) simply don't run all the necessary tests to properly diagnose me. They then use an inferior cheaply manufactured synthetic medication to treat me which cause more symptoms especially the more years you stay on it.
If you are feeling terrible and have symptoms, then you need to push for this testing. You need to read up on this topic then hunt for a good Dr that will listen and run these tests.
The best type of Dr to go to is a holistic or integrative functional type Dr. They may cost more, so If you can afford the money I strongly recommend you bypass your regular doctors and any specialists (Endocrinologists) and head straight to a holistic/integrative Dr who will run all the correct tests and treat you effectively. If you don't then you will continue to suffer, not get proper testing and wast your years fighting this battle. Believe me I've been there.
If you don't know which Dr to go to I suggest Google search holistic or functional or integrative Drs in your area. You can alternatively join the facebook support groups for thyroid patients and ask there. Usually they have a recommended list on file for everyone.
FACEBOOK SUPPORT GROUPS
facebook.com/search/str/FTP...
LEARN MORE ABOUT YOUR SYMPTOMS AND THYROID
stopthethyroidmadness.com/r...
Some good videos to see are below:
Why the TSH test is not enough:
youtube.com/watch?v=lJ_8Fsq...
What tests you should have done & what is the best type of medication: youtube.com/watch?v=lxdxEIx...
What to look for in a good thyroid Dr:
youtube.com/watch?v=Sn-NosI...
You also want a Dr who won't just use the generic standard synthetic medications (Levo-Thyroxine or Synthroid) but will also consider & know how to use the alternative bio-identical hormone medicine called "Natural Desiccated Thyroid Extract"(NDT), which is just as if not more effective for most people.
youtube.com/watch?v=zMNrjSS...
What does your thyroid do and what hypothyroidism is:
youtube.com/watch?v=iNrUpBw...
You will get there and feel normal again.
Wishing you all the best. xxx Melanie
P.S I am in no way affiliated with any of the above and just passing on my experience and knowledge hoping to help other who are battling to get proper diagnosis and treatment.
I have my Dr appointment tomorrow morning and have to be honest, I'm feeling scared.
I'm not scared of hypothyroidism I'm actually scared of NOT having it! Does that sound awful, to be wishing this condition on myself?
I hate feeling like I do and so want there to be answer and a solution, but I have been fobbed off so many times, I'm starting to believe the Dr's.
My stress levels are off the scale tonight......
No, that doesn't sound awful, I understand perfectly. You need to be able to put a name to your problems. And, when you have a diagnosis, you can start Learning how to treat it.
Good luck with your appointment. I'll keep my fingers crossed for you. (Let us know how you get on! x)
OK, so I saw the GP, she was very sympathetic and caring but basically told me that because of the guidelines put in place by NHS UK, GP practices were obliged to stay within them and her hands were pretty much tied.
She agreed that my TSH (which actually turned out to be 3.91 not 3.08 as I was told by a receptionist) was borderline and could indicate sub clinical hypothyroidism, but (and there's always a but) because NHS UK submitted parameters up to a TSH of 5.5 being considered normal range, she could order more bloods but the lab would be at liberty to decline processing them based on a previously "normal range" result!
I was furious (not with her I might add). since when did lab technicians get given the right to override a GP's clinical judgement?
She has also referred me to the local hospital's endocrinologist stating that she has ordered full blood works (repeat TSH with Free T3 & 4, T3 & 4, anti-bodies, B12, folate and full auto immune screen).
She has however further advised me that the hospital team are at liberty to refuse the referral if they deem my current results to be within normal parameters too, despite
my symptoms.
She also says she can't start me on any treatments as she is not allowed too based on my last result.
So all I can do now is have my bloods taken on Monday morning, and then sit back and wait.
If my investigations are refused I have no option left but to go private.
Not sure how to feel right now.
You GP sounds lovely despite the constraints she's under, you have a referral and more thorough blood tests (don't see Vit D 'tho - if not, you can test it yourself here for £28 - a NHS lab)... cityassays.org.uk/vitamins....
Find out if you've had a previous TSH test too and see if it's rising, nearly 4 is high in range. Don't forget to get bloods tested first thing & no food (or smoking either if you're a smoker - I'm not assuming you are, it's just in case as it can lower TSH). If your vits/minerals are low you can help some symptoms by sorting them, or if autoimmune many find that going gluten free helps too. Good luck J 
Thank you,
I don't smoke (gave up 6 years ago thank goodness) and think that fasting before the test makes good sense.
I will post up my results (if that's ok) so I can hopefully learn to understand them
Time for an update, spoke to my GP this morning, as we feared the labs would not do my blood work as they said my TSH of 3.9 was within normal range.
My GP recommends waiting to see if the endocrinologist will see me (she did a referral at the same time she requested my blood work), if they do then she feels that they may be able to request the necessary tests as the time frame for a repeat test will have elapsed.
Of course, the endocrinologist could still refuse to see me for the same reasons the lab refused to process my new bloods.
I can't afford a private test, I feel really unwell, totally deflated and quite frankly beaten.
How naive of the NHS to ignore sub-clinical hypothyroidism, surely it makes sense to treat someone before their thyroid packs up altogether and/or they develop symptoms that ARE a drain on the NHS resources.
I think it is downright crazy to leave people feeling so unwell etc. I am also trying to get diagnosed at the moment and have hit a brick wall.
I have had the blood tests done, my TSH is 3.4 and freeT4 of 15 with low but not deficient levels of B12, Vit D, folate and ferritin and iron. T3 was not tested. Thyroid antibodies of < 20
I am taking some herbal supplements as I also believe that my adrenal system is battered as I have been going through a very stressful situation since last year which is when I started feeling unwell and I am now taking a Vit D supplement and will be taking a B complex supplement with a boost of B12 when it arrives and will see how I am and if there are any improvements in about 6 weeks time.
I talked to someone today who used to work very high up in the NHS and he said, we have every right for a second opinion and to ask to be referred to a specialist.
I have lots of niggly symptoms (over 40 odd on the thyroid checklist) but the one that terrifies me is my weight - I have put on 2 stone since this time last year and the majority of that weight 1.5 stone has piled on since Christmas and I have changed my diet for the better!!!
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