I've found out my thyroid level is 100 , Doctor had dismissed it , is this right ??

[Tiredmum71]

I've been feeling ill for a while now , struggle to get out of bed , or even do the everyday things .. I'm in a lot of pain in my body .. dry skin and hair .. slight weight gain around my belly and top of my legs .. muscle waste on my arms .. erratic blood pressure .. pulse never under 98 .. I could go on .. anyway doctors sent me for various blood test . Then tell me bloods are fine , and send me on my way as if I'm making it all up and wasting there time .. I found out the other day that my thyroid has come back abnormal level 100 yet doctor wrote on it no further action taken !
Is this right ? Should I of not been told about this ? is this bad ? Should I be worried ?

[Barb135]

Now, I see why your doctor isn't willing to treat you, if TSH is at 3.69... They're using an outdated reference range, but that's typical in U.K - even in the U.S. for that matter - and your TSH is well within the range.  We know from experience that NHS guidelines require doctors to go by TSH results.  You may have to see several different doctors before you find one that will listen.  Many of our U.K members have had to pay privately in order to get adequate testing/treatment.  Hopefully, the doctor you see at the end of the month will be the one that listens.

Can you find any other tests that have been done, such as Free T4 or Free T3?  If so, please post them, with their reference ranges.

Also, can you find a vitamin B-12 test?  

If you haven't been tested for Free T4, Free T3, vitamin B-12 or vitamin D, ask the doctor to test you.  

[Tiredmum71]

I haven't  been tested for any of them .. I will ask next week and let you know .. thank you for your support

[Tiredmum71]

I have seen a doctor who cares ... she was fuming that the other doc has dismissed my abnormal blood test result and requested I come back in 5 years ... !!!
She said just because the other results have come back normal that does not mean that this one is fine ... it is abnormal and it needs investigating further ... she is going to send me to a thyroid specialist and report the other doctor for not doing his job properly !
Before I see that incompetent doctor a lady doctor has wrote on my notes that she suspects I have fibromyalgia.. yet he dismissed that too !!

Thank you all for your advice and support .. all of you !
Please don't anyone ever give up !  You know your own body , in the end you will always find someone who will listen

[Tiredmum71]

Ok TSH level , I've found it , it's 3.69mu/l ( 0.45-5.5)

[Barb135]

You posted a Thyroid Peroxidase Antibody result of 100... gimel mentioned a high TSH, but I don't even see a TSH result anywhere; do you have one?

[gimel]

I am very surprised that the doctor did nothing in response to the high TPO ab test result, which indicates Hashimoto's Thyroiditis.  Even in the UK, doctors usually respond to high TSH results by at least testing for Free T4.  Then, unfortunately, if the Free T4 result is in the range, they tend to do nothing further, even though the range is much too broad to be functional for everyone.  We are very aware of the difficulty in getting adequately tested, diagnosed and treated for hypothyroidism, in the UK.  One of our members told us several years ago how she was finally able to get treated.  Following is how she described it.  

"What I have learned from my experience is that you have to go to the Dr's office and TELL THEM WHAT YOU WANT and to go backed up with knowledge.  You have to tell them that you have done your reading and looked into your condition and care about the long-term treatment of your health and thyroid.  If you fight for what you want, you will eventually find someone that is happy to go along with your wishes.  But we all have to take charge of our own health, right?"

So that is why it is important to learn enough about the correct way to test, diagnose and treat hypothyroidism.  For that I refer you back to the link I gave you above.  In the paper you will learn that you need to be tested for both Free T4 and Free T3 every time you are tested.  Also you need to test for Vitamin D, B12 and ferritin and then supplement as needed to optimize.  D should be at least 50, B12 in the upper end of its range, and ferritin should be at least 70.

If you are unable to get through to your doctor then you will have to find another doctor that will treat clinically, as I described, or else go private if that is possible.  

[Tiredmum71]

Thank you so much for your support .. a lovely doctor who has been on maternity leave Is returning the end of this month .. I will see her when she is back and ask her to test me for them .... I've seen a neurologist he told me I'm suffering with migraines and is arranging a Brain scan .. I have probably had about 4 migraines in my lifetime and I'm 45 .. another one that didn't listen to what I was saying !
I felt like given up on doctors at that point .. but your right the levels clearly indicate something is not right .. the neurologist had said he will write to the doctors and request they monitor the thyroid levels as he wasn't happy with that result .. so someone paid attention to it .. but the symptoms he put in the bracket of migraine even tho I said the symptoms end up giving me a head ache .. not that I'm getting headaches and there bringing on the symptoms . If you see what I'm saying !

[Barb135]

A neurologist can help you with this... You need to know which antibodies are over 100.  It's probably Thyroid Peroxidase Antibodies and if so, that indicates Hashmoto's.  That also indicates that your actual thyroid hormone levels might too low, as Hashimoto's destroys thyroid tissue so it can't produce adequate thyroid hormones.  

The pains you're having could be related to vitamin B-12 deficiency, but could also be related to hypothyroidism, which is where the neurologist comes in.  He will find out what's causing your pain... if your doctor hasn't already sent him copies of the the blood work that's been done, ask him to go ahead and order it.  Do make sure you tell him everything, including the fact that your antibody count is high and let him get to the bottom of it.

[Tiredmum71]

I will,  thank you .. I think I may go to the surgery and get a copy of it myself to take with me ,just incase it's not on my notes at the hospital .. this doctor
( GP) is so rude .. and there are signs in the surgery about anti tolerance to abuse of the staff ! What about the patience !
I will never go back to him again that's twice his been rude to me ... all because the dentist asked me to go to the gp and ask to be tested for sjrogens syndrome . As soon as I showed the doctor the piece of paper ,he said don't be stupid ! I said excuse me , stupid , the dentist asked me to come here and ask for this test .. maybe he thought I was trying to tell him his job !
I wasn't , but I now believe that someone needs to !

[Barb135]

Yes, if you can get copies of the labs, that would best.  If you do that, you can also post the result and reference ranges here, for us and we can help you, as well... Many doctors will tell you you're okay per the labs, when, really, you aren't.

Don't worry about that doctor; some are just like that and nothing you do/say will change them.  Just move forward and find one that will treat you with respect.

[Tiredmum71]

Thyroid peroxidase antibody level advu
100iu/ml ( 0.0-61.0) above high reference level limit
This is what the abnormality on my blood test is . again still means nothing to me ... so this means I do not have hypothyroidism?? Is this correct?

[Barb135]

If you're in the U.S., your doctor is obligated to provide you with a copy of your labs, upon request.  If you're not in the U.S (it sounds like you might in U.K?), insist on a copy, many doctors will provide a copy anyway.  

If TSH is all that was tested, insist that Free T4 and Free T3 be tested, as those are the actual thyroid hormones, whereas TSH is only a messenger hormone.

Don't be afraid of the doctor... they do make mistakes and this one needs to own up, though he probably won't "tell" you he was wrong.  The important thing is that you get on medication as soon as possible.

[Tiredmum71]

Thank you for your comments guys ... I am in the U.K. .. this gp is very arrogant .. I saw him today and asked him about the results , he said ... " it's anti bodies that are 100 I would expect them to be high in someone Middle Aged !"  Wasn't at all interested in my symptoms.. I'm seeing a neurologist in 3 days hopefully he will be able to shed some light on what is going on as I get a lot of shooting pains up my legs lately and numbness in my hands and sometimes feet

[des900]

Sadly the neurologist will not be able to help much regarding it unless its related to nerve damage or other nervous system issues.

I suggest you to order the blood test you itself with some private lab which doesn't require any prescription and see whats going on in your body. Suitable test for thyroid related include these.

Free T3, Free T4 and TSH (basic thyroid panel)

25 hyrdoxy Vitamin D3, Serum Vitamin B12, Ferritin (general well being)

Serum Calcium, Serum Phosphorus, PTH (concerning bone related issues)

[Tiredmum71]

Ok thank you I may have to do that .. I spoke to the chemist .. the lady said the doc is wrong and I should be on medication.. I told her I was seeing a neurologist,  she said tell him everything he should be able to help you .. that's why I was hopeful about this appointment.. I will see what happens on Thursday
Thank you very much for your advice

[des900]

Seems like low T3 issue. If you are on levothyroxine then try dessicated one and see if its helping. Anyway its best you check the Free T3.

[Tiredmum71]

I'm not on any meds

[gimel]

In order for you to be prepared for your appointment tomorrow, I suggest that you read at least the first two pages of the following link, and more if you want to review the discussion and supporting evidence for what is suggested on page 2.  Just keep in mind that a good thyroid doctor  will treat a hypothyroid patient clinically by testing and adjusting Free T4 and Free T3 as needed to relieve symptoms, without being influenced by resultant TSH levels.  

http://www.thyroiduk.org.uk/tuk/TUK_PDFs/diagnosis_and_treatment_of_hypothyroidism_issue_1.pdf

[Tiredmum71]

Thank you for your reply ... I've done nothing but read and read since last Thursday when I found this out ... if he doesn't admit today that his made a mistake And either treat me or do more tests what ever Is needed. I will go and see the duty manager
Since I have had these symptoms it's also brought on anxiety with any little bit of stress .. I'd never suffered with this before in my life .... I'm going to find it really hard today to face this doctor today .. but I will force myself , can't go on like this .. I was such a positive person and it's changed me so much . It's quite scary

[Barb135]

What thyroid level is 100?  We need to know what test(s) were done before we can really help you very much.  

The standard test that most doctors do to test thyroid function is TSH and if that result was 100 and your doctor dismissed it as "okay" - you need a different doctor immediately...

Your symptoms are suggestive of hypothyroidism, except the rapid heart rate, which suggests hyperthyroidism...

Please post all thyroid related blood tests, their results and reference ranges, so we can see exactly what's going on.

[Tiredmum71]

Thank you for your reply .. I have no idea what the other results are .. I went to see the nurse , she said to me I'm glad they finally found out what is wrong with you .. I had no idea what she was talking about until she showed me my notes on her computer that said thyroid abnormal.. and she told me the level was 100 .. I was so shocked after being told on the phone 3 weeks before that all my blood tests come back normal . And they said no further action taken as this one did also .... I left there with no idea what this meant until I spoke to the pharmacist, she told me it was bad and I should be on medication .. the earliest appointment I could get is for tomorrow for the same doctor that wrote on it " no further action taken .. so I wanted some advise as wheather or not I'm being fobbed off by this doctor .. I do get swelling in my throat .. and occasionally it hurts ... my mind has been all over the place .. I'm so forgetful.. and I can't function with these symptoms. That the doctor just dismisses .. if he will give me the rest of the results I will tell you