Come back in three years...(hypothyroidism)

I went to see my GP back in early February as I have a tightening in my throat, croaking voice (sometimes loose my voice), feel like I have a constant frog in my throat, feel fatigued, have a constant hissing in both ears, feel constantly cold, have occasional palpitations where I think my heart 'stumbles', I am extremely forgetful and find it hard to concentrate, I am sometimes short of breath, don't seem to be able to loose weight although on a diet, suffer from mood swings and depression, I also have been diagnosed with Vitiligo lately. (Complete loss of pigment on areas of my skin)

They have done a blood test in February where the test results came back with TSH of 5.5 which I was told was subclinical and they wouldn't treat it at this stage. They also noted reduced kidney function which they said had to be observed. I was asked to come back in three months to have another blood test done, which was now done on Monday.

Today I got a phone call from the surgery with regards to the test results telling me that the doctor said I should come back in ....three years !! I don't know what the results were this time, they didn't say...but three years ??

They did ask for a urine sample though which I should bring in....

I am at a loss to be honest.

Not sure where to go from here ?

15 Replies

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  • I think it is time for a change of GP who will take you seriously and listen. Then get them to recommend a good endocrinologist. With the symptoms you are experiencing I think a good endocrinologist who will work along side of a good GP is what is needed now for you. Your GP does not seem to care.

    And so that you know GP's are not that well up with the thyroid as Endo's are, so that is why I think you should get one to treat you.

    Best of luck x

  • I think you should dump your doctor. He knows little about the function of the thyroid gland. We have to educate ourselves, unfortunately, as there seems to be a big gap when they're training as medical students, particularly as thousands have a dysfunction of the thyroid gland and I think many of them must by now have other chronic conditions due to undertreatment/undiagnosed.

    Get a print-out from the surgery of your blood test results, with the ranges, and post on a new question for members to comment. If you've not also had a Vitamin B12, Vit D, iron, ferritin and folate ask for these as we are usually deficient and they can cause problems if deficient. If he's not tested for thyroid antibodies request this also. Unfortunately, we have to ignore what doesn't make sense to us and find a solution to becoming well or not getting worse.

    Did you have your blood test for the thyroid gland as early as possible? That's when the TSH is highest but I doubt that would matter to your GP.

  • Email louise.warvill@thyroiduk.org and ask for a list of recommended doctors/endos or give your area and Post a new question to ask if someone has a recommendation and to send you a Private Message.

  • I am from the Southwest of the UK (Plymouth/Devon) , 46 years old and female. Just in case that also helps.

    I will try and get the test results from the GP, last time they were reluctant to tell me or show me. I only got the 5.5 TSH from the dermatologist who I saw about my vitiligo. He looked it up on the computer for me and told me the TSH from the February blood test

  • Hamburger, the Data Protection Act entitles patients to their test results. Contact the practice manager and ask for your recent test results either as a printout, verbally with the lab ref ranges or by making an appointment to view your medical records and make your own notes. If he refuses make a subject access request in writing. ico.org.uk/for_the_public/t...

    Most GPs treat subclinical hypothyroidism when TSH is >5 or 6, especially in the presence of positive antibodies, but some insist on waiting until a patient is overtly hypothyroid with TSH >10 by which time symptoms and quality of life may be intolerable.

    thyroiduk.org.uk/tuk/diagno...

    thyroiduk.org.uk/tuk/about_...

    I agree with the other members, it would be a good idea to see other GPs at the practice to see whether you get a more empathetic reaction or change GP practice. You certainly must have at the very least annual thyroid tests, waiting 3 years means you may become very hypothyroid.

  • If you respond to a comment you have to press the Reply button otherwise we aren't notified and you may wonder why you haven't had a response - if one was needed.

  • If it helps to understand why this has happened, read this page (my bold) :

    cks.nice.org.uk/hypothyroid...

    " If treatment is not offered, it is still necessary to monitor thyroid function to detect progression to overt hypothyroidism.

    If the person has serum TPO-Abs, measure serum TSH and FT4 annually, or earlier if symptoms develop.

    Otherwise, measure serum TSH and FT4 approximately every 3 years, or earlier if symptoms develop."

    Then read the rest of the info on the subject by clicking on each of the items in the left hand column. At least you will know what you are up against. Clearly your doctor has ignored your symptoms.

    Another thing that is worth reading so that you are better prepared for facing the doctors is the RCP statement on treating hypothyroidism - another very sadistic document, but you really need to know about it :

    rcplondon.ac.uk/sites/defau...

    Sorry, this isn't a comforting post, but "know thine enemy" is very important when you have to fight!

  • Sorry but your doctor is a blithering idiot and should be reported to GMC for negligence

    TSH of 5.5 is extremely hypothyroid as are all your symptoms

    If they wait 3 yrs to treat you it will be way too late

    Either find another caring gp or obtain NDT online and self treat

  • As you have Vitiligo - which is auto-immune - then it is possible you have Hashimotos - the auto-immune version of thyroid illness. It is the most common of thyroid conditions - in spite of GP's not always requesting the Anti-TPO to be tested. auto-immune conditions often come together. I hve Crohns to keep my Hashimotos company - or is it the other way around ? :-)

    I have Hashimotos - and when diagnosed the FT4 - FT3 - TSH were all in range. Diagnosis was based on the very high anti-bodies.

    Do you have any gut issues ?

    Lots of good advice above which I am sure will prove helpful....

  • I also thought of an auto-immune root cause as I also believe the two conditions are connected in my case.

    Having read one of the posted articles above which explained the three year gap in testing and this one here

    british-thyroid-associa...

    noting specifically this:

    • Subjects with subclinical hypothyroidism who are thyroid peroxidase antibody

    positive should have an annual thyroid function test. Subjects with subclinical

    hypothyroidism who are thyroid peroxidase antibody negative should have

    repeat thyroid function testing approximately every 3 years.

    Maybe I am antibody negative then ? I think I need the test results to get a better picture on what is going on.

    To answer another query from one of the post, yes I have had digestive problems for years. Bloating, cramps, wind, indigestion etc I was hospitalized a few years ago due to severe stomach pains. I needed investigative surgery, they did scans plus a gastroscopy and found something like a strange ulcer in my stomach lining which had almost perforated the stomach. The specialist said it didn't look like a normal ulcer but he couldn't think of anything else it could be as he had never seen anything like it, so it went down as a gastric ulcer anyway. Any biopsies came back as normal though and follow up gastroscopy also showed the area as healed , returned to normal. So in short yes, I do have gut problems too .....

  • Digestive problems are linked to Low Thyroid - and of course Low B12. Do have all the tests that have been suggested above....

    The lining of the gut has masses of T3 receptors - the gut has the biggest need for T3 after the brain :-)

  • I don't want to worry you unnecessarily so, but if the doctor is ignorant we cannot be:-

    ncbi.nlm.nih.gov/pmc/articl...

  • I also thought of an auto-immune root cause as I also believe the two conditions are connected in my case.

    Having read one of the posted articles above which explained the three year gap in testing and this one here

    british-thyroid-association...

    noting specifically this:

    • Subjects with subclinical hypothyroidism who are thyroid peroxidase antibody

    positive should have an annual thyroid function test. Subjects with subclinical

    hypothyroidism who are thyroid peroxidase antibody negative should have

    repeat thyroid function testing approximately every 3 years.

    Maybe I am antibody negative then ? I think I need the test results to get a better picture on what is going on.

    To answer another query from one of the post, yes I have had digestive problems for years. Bloating, cramps, wind, indigestion etc I was hospitalized a few years ago due to severe stomach pains. I needed investigative surgery, they did scans plus a gastroscopy and found something like a strange ulcer in my stomach lining which had almost perforated the stomach. The specialist said it didn't look like a normal ulcer but he couldn't think of anything else it could be as he had never seen anything like it, so it went down as a gastric ulcer anyway. Any biopsies came back as normal though and follow up gastroscopy also showed the area as healed , returned to normal. So in short yes, I do have gut problems too .....

  • I have now also developed wide spread blood spots (petechiae) on my skin all over my body.

    They took more blood to check platelet count, liver and kidney function. I expected low platelet count as I expected it to be connected to my vitiligo and be another auto-immune problem....

    Phoned surgery today for results and told all results came back satisfactory.

    So can't understand why my blood tests always come back OK ...??

  • My grandmother died thanks to a GP who did not treat her hypothyroidism. She went into a myxedema coma and never returned. If I were you I'd get some natural thyroid preparation (start off slowly, don't just take a whacking big dose) and treat yourself. Tell the doctor you decided to start a trial of NDT yourself and get him or her to monitor your TSH until you can get it way down.

    Not sure why people are afraid to tell their doctors that they are self-treating. Remember if you go into the hospital they will be relying on your GP's records for you and you might end up getting sicker by being unable to have your thyroid treated.

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