Thyroid levels showed up normal on blood tests but I think I've got Hypothyroidism

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After struggling with uncontrolable weight gain, hair loss, lack of libido, depression,pain in throat, extreme sensitivity to cold, puffy eyes and chin, muscle cramps to name the main symptoms , I underwent the routine blood test by the doctor.It came back that my thyroid function was normal and the doctor suggested that I was probably getting over glandular fever and this would explain my painful throat.He suggested patience and that I will be better soon.

I knew that 3 cousins on my mothers side have thyroid disorders but I've recently found out my paternal grandmother suffers with hypothyroidism as did 4 of her 7 childern (not including my father) and my cousin, who is displaying all my symptoms.

She was able to pay to go privately to an endocronologist who did more indepth blood work and indeed wnt on to diagnose her.

My question is'nt really about whether or not people think it is or isn't thyroid problems it's more ofr advice as to how to go about gettign referred on to an endocronologist via the NHS.

I'm not one for wasting the NHS's resourses just to settle curiosity, I genuinely feel given my family history, symptoms and the fact that I have another auto immune condition (endometriosis) that I should be referred.

Does any one have any similar experience or can advise me on my rights as a patient.

If I have to I will save up, but it will take me while so any help would be greatly appreciated.

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19 Replies

  • Posted

    Hi

    I can fully empathise with all of this.

    I would advise going back to your GP and informing him or her of the family history of thyroid disorders and include all of your signs and symptoms.

    other members of this forum will vouch that the thyroid levels can and do fluctuate hence regular blood testing.

    Jean

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  • Posted

    If there is no improvement within a reasonable time and your doctor is out of ideas then a referral to a specialist is in order.  Did he tell you what your TSH level was from your blood test?   You can find what the normal range is by googling TSH or checking Wikipedia.  Did you tell your doc about the family history?
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  • Posted

    Hello Gemerald:

    My name is Shelly and I am an RN.  I live in the USA.  Thyroid disease can run in familes. I have Hashimoto's a type of autoimmune thyroid disease since 1987.  It can happen between the ages of 20-40 or in later life.  It also can make your blood level look normal and then swing up or down.

    It sounds like you have many of the symptoms. Weight gain, being tired, muscle aches, and feeling cold.

    I would recommend a bit more blood work like T3 and T4 levels, mineral panel to include, potassium, sodium, calcium, magnesium, iron and ferritin levels.  Also a TPO antibody test and Epstein-Barr titer, (this is a virus and it can attack the thyroid, it used to be called mononucleosis).

    There are thyroid meds available to replace the hormone, and you may want to see and Endocrinologist.  I do not know doctor's in the UK but others do know good ones.

    Can you get a referral from your GP via NHS?   Of course private is better but it will cost you money.

    Please take care, let us know how you are doing. Shelly

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    • Posted

      When I was taken ill in December 2013 with this mysterious illness which inclded severe headaches, a throbbing pain in my right eye, dry eyes and concretions of the eye that were removed by a consultant ophthalmologist under the slit lamp my ey was alsobright red approx three years ago. At the time this red eye was attributed to concretions caused by dry eyes.

      It was not until August 2014 some 8 months when I paid to have my antibodies checked simply because they were on a special offer alongside the bloodwork that I wanted doing that it was found that the  EBV was positive. The ANAs were also positive being 1 in 80.

      I now believe that I was sufffering from a thyroid eye.

      Jean

      I think that this infection attacked my thyroid.

      My TSH was 0.17 on May 5 2015 ,in June it was 0.16, in July the tsh was 0.60. Two weeks ago the tsh was 0.047.

      I have 20 nodules on the thyroid and yet no treatment haas been started. One endo physician suggests RAi but I am dubious about this due to the side effects on the eye and the possibility of becoming hypothyroidism.

       

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    • Posted

      Hi Shelly

      As I stated in my previous e mail.

      In August 2014 my EBV was positive .

      The ANA's - anti nuclear antibodies were also positive being 1 in 80.

      Yet I started being ill with headaches, profuse sweating, throbbing pain right eye , anorexia, severe anxiety and depression, fearful of everything and everybody, peripheral neuropathy in December 2013.

      In April I had a ctpa scan to exclude a pe which showed a multinodular goitre as an incidental finding.

      On June 30 2015 an USSS showed 20 nodules on the thyroid.

      The TSH in May and June was 0.17, and 0.176 respectively. In August it was 0.047.

      Is it possible that the diagsnosis of Hashimotos has been ovrlooked at all?

      Jean

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    • Posted

      Shelly

      Do you or anyone else know if the TPOA 's are always raised in Hashimotos?

      Do you know if the TPOA of 16.5 is a positive finding or not. I am afraid that this is beyond me as I find it very frightening and this makes things uncllear. I suspect thta this is a form of defence mechanism coming into play.

      Jean

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    • Posted

      Hello Jean:

      I know what you went through. You match a lot of the Hashimoto's symptoms.  The TPO antibodies and the EBV being positive.  you also have so many of the symptoms of low and even a few of the Hyper side.  I just don't get why the NHS can't daignose you right. 

      It is a tricky disease and you really need a good GP to work with, or  an understanding Endo.  It could be overlooked for sure.

      Keep trying to get a good doctor.  XO Shelly

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    • Posted

      Hello Jean:

      The antibodies test is for autoimmune and in this case for Hashimoto's Disease.  If it is greater than 9, which yours was it can be a factor that you have an autoimmune condition. 

      You seem to have so many of the blood values and symptoms and I think  you need to find a much better doctor.  Since I am in the USA, I do not know of any in UK.  Can you ask the other ladies on the forum who they use?

      Shelly

       

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    • Posted

      Thanks Shelly

      When I read your response to gemerald it made me think that the EBV and anas done by a private blood testing Company that I selected online  were overlooked by the NHS| et al as was the bloodworks done on May 5 2015 at an eye hospital. The ophthalmologist in the emergency eye clinic ordered the TPOA's, TSH.The TPOA was 16.5. TSH was 0.17.

      Perhaps it is because they wer overlooked that I am having difficulty getting a 'correct' diagnosis. After all as we all know reputation of drs always come before patient welfare.

      I also have a posterior vitreous detachment and had to have reinal photography and USSS of my eyes.

      I had red eye with concretions which are deposits of chalk in the eyes from blocked glands in the eyes.

      I was prescribed artificia tears bt it was the same old, same old due to being hyoersensitive to just about everything on this  earth I was unable to tolerate the artificial tears eye drops or sprays that you just spray onto the closed eyelids.

      My vision was very blurred and I had to have new glasses every three months. Thankfully my vision is not as blurred and the pain has cleared up. I hope I have not spoken too soon!!

      Looking back on the anno horriblis I think that the dry eyes were caused by a thyroid disorder and I actually had a thyroid eye.

      It does not sound very much to say that I have dry eyes but in reality it is a most horrible, nasty condition that prevents one from even reading, watching TV etc, etc. I had to wear sunglasses in the house. I now have specs wih transition lenses that cost £350.

      Jean

      Jean

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    • Posted

      Thank you for this Shelly.

      Can anyone possibly help to find a good reliable endo who can pull all the details together .

      If so I would geatly appreciate this . Please would you send the details by PM .

      Many thanks

      Jean

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    • Posted

      Hello Jean:

      I was going to say I bet you have to wear dark glasses all the time. I saw in your response that.

      Another condition that can cause a huge problem with dry eyes is Sjogren's and it is also autoimmune. A swedish doctor named Sjogren discovered it. 

      It is related to the Arthritis family of diseases  and can cause nasty aches in the body, Severe dry eye problems, skin problems.

      Sjogren's can be treated.  The man thing is it causes severe dry eyes.

      They have a blood test for this.  So if you can - you may also want to rule out if you have it. Because you have high TPO's, it should be looked at.

      Jean, I feel for you.  I know how much you are dealing with, and I hope someone in the UK near you can help.  You need a really good doctor to help sort all of this out and lessen your fears and worries. I wish I knew a good doctor over there.

      XO Shelly

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    • Posted

      Dear Jean:

      Look into Sjogren's syndrome in addition to thyroid trouble.  I do feel you have markers for Hashi's.  You need a really good doctor who can examine you and put all the pieces together.  Try and keep a good record of your problems and when they started and keep your blood work lab tests handy also. 

      EBV is known to cause thyroid damage.  So you tested positive for that.  If only you could get a good Endo who can help you, and I hope you can find one near your home.

      XO  Shelly

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    • Posted

      Thanks Shelly

      I am hoping that someone on the  Forum will suggest a good endocrinologist because I am getting to the end of my tether.

      Each dr repeats what the previous one said. They have all mainteined that the TPOAs are normal at 16.5. I just don't uderstand where these people are coming from.

      Jean

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  • Posted

    Please post here blood work samples....to know what are ur blood test levels suck as tsh and t3 t4....so we can determine your second opinions here..... hypothyroidism is tricky to diagnose so yea post blood work. ..
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    • Posted

      Either doesn't matter ..... in my opinion if your tsh is in the low end like tsh- .8uiu/ml you are low if your t4 is high above 1.95ng/ml you are high.....I am strugglING right now with low hypothyroidism ....that my blood work...t4 free is 1.12 ng/ml...
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    • Posted

      Also as the body changes get your estrogen, testosterone , igf-1, prolactin, and iron Levels to see if they are causing any issues... to rule out any other issues like the pituitary and hypothamalus they are all both connected with your horomones even insulin...I know it sound crazy but theses are the glands that control your body....
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    • Posted

      And these glands control your thyroid, ur pancreas and ur ovaries and testicles...
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    • Posted

      Hi Jeff

      My tsh was 0.17, T4 16.5 TPOAs less than 33 on May 4 2015.

      In June the tsh was 0.16.

      In Aug it was 0.50

      On 29 August 2014 the anti nuclear antibodies were positive being 1 in 80.

      The EBV was also positive.

      On Arptil 27 2015 a ctpa scan ssdone to exclude a pulmonary embolism showed a multinodular goitre as an incidental finding.

      I had to go privately for an USSs of the thyroid. Tis showed 20 nodules on the thyroid. Nil done.

      Jean

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