GP has rang due to my levels being out! Want to ask for more tests but not sure what?

Hi guys and thanks in advance for any advice given.

Might as well start at the beginning lol 1

In Jan 2007, I was diagnosed with post-natal depression (dd2 was 6 months). Fortunately my GP asked for a full blood test to be done and it showed I had a severe underactive thyroid, I believe my TSH was over 80 and immediately put on Levothyroxine, unbeknown to me at the time I was also 2 months prg with ds1. Anyway I fely absolutely amazing within days of taking meds, kept having blood tests and eventually ended up by 2013 with a dose of 300mg.

I had another dd3 in july 2010 and have felt right since. I'm ill every other month or so,I mean real illnesses such as meningococcal septicemia meningitis, appendicitis, hospitalised with kidney infections, swine flu where i was hospitalised, pelvic infections (hospital stay again x 2) I've lost 6 teeth, wear dentures and have numerous abscesses in my mouth at least 6/8 x a year - you name it, I've had it. I've got arthritis in my spine and degenerative discs in my spine also

I'm only 33yrs next week!

I've never seen a specialist as my GP's don't think it necessary (???)

I had a blood test yday due to my meds being took down to 250mg in January, and the GP has rang at 10am today and wants me in for an appt today at 3.30pm and all I could get from the receptionist was that one test of TFT came back at 53, am I right in assuming thats my T4? As you can all imagine I've or should I say we have had enough of living like this, fortunately dh and my family are super but we feel this can't continue.

Anyway what should I be asking the GP? What tests should i ask for? and am I right to want to see an endocrinologist?

Sorry for waffling x

12 Replies

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  • Forgot to add that my periods are horrendous and my heart rate is always over 110 but they always put that down to me being hyper rather than hypo and was one of the reasons my med was dropped to 250mg ! I also sweat alot (sorry tmi) but tends to be mostly my face and I weigh 13st11 having lost 11lb in 6 weeks (how with my thyroid underactive I don't know) x

  • I always had severe palpitations when on levothyroxine and trips in ambulance.

    Palps stopped when I stopped levo and I'm fine now I am on T3 alone.

    Sometimes doctors don't know what they are doing and adjusting doses only on the TSH can result in even more problems.

    web.archive.org/web/2010103...

    When you click on the Pregnancy link above read from the third question down (Dr Lowe) you will see other topics at the top of the page - female problems you may want to look at.

    (I seem to have lost some portion of my comment so have amended the above).

    You should have been referred to an Endocrinologist long ago but if you email louise.warvill@thyroiduk.org she has a list of NHS Endos/private doctors and it would be worth to travel to see one.

  • I cannot believe you have suffered so many things - it must be so hard with a young family. May I suggest you have your Thyroid Anti-bodies tested in case you have Hashimotos - the auto-immune version of thyroid illness. They are Anti-TPO and Anti-Tg. It could explain the swing between hyper and hypo. Also Hashimotos is the most common form of thyroid illness throughout the world.

    You also need to ask to have your Iron - Ferritin - Folate - B12 - VitD - tested too as they need to be OPTIMAL and not just in range. I think we need to see all your thyroid bood test results with their ranges - ask for all the ones since you were diagnosed. It is your right to have them for your own records. Have a feeling the reading you were given may be the TSH. You must ask to have the FT4 and FT3 done if they have not been done already.

    Will look out for your post after you have been to the Doc....hope all goes well and do not be fobbed off by your GP who sounds as if he has not cared for you optimally over the years....you deserve the best....

  • Thank you Ladies, so am I right in thinking that I nned to ask for ferritin, floate, B12 & VitD and a thyroid antibodies test? as well as looking at going onto T3 instead of levothyroxine?

  • Yes LornaP, iron, folate, ferritin, Vit B12, Vit D.

    Regarding T3 I think the answer is possibly, may be not! Until you have the T3 and T4 results in conjunction with that of your TSH you won't have a clearer picture. As shaws says, she does better now on mono T3 than T4, but others do well on combo T3&4, while others find that mono T4 suits them. Having t3 and T4 results show if the thyroxine you are taking in the form of inactive pro hormone T4, is being adequately converted to the active hormone T3. If it isn't, adding in T3 may improve things without necessarily needing to move to mono T3. Additionally of course, there is the option to change over to the natural porcine or bovine form of thyroxine known as NDT, rather than the synthetic T4 levothyroxine.

  • Thank you so much, my appt is at 3.30pm and is with one of the best GP's there.

    I've written everything you have all said down n I'm going with the mind set of 'sort' me out or I'll go private LOL (Although I wont be rude.)

    Just to confuse me even more I just rang the surgery to ask them the results of the blood tests ( I believe I've had ferritin, full blood count, thyroid function test, B12 & Kidney function) I was thinking forewarned, forearmed et, well the receptionist was soooo rude and refused to give me my results because she's only a receptionist and can't possibly read numbers from a screen !!!!!! and told me that my kidney function is the one that's out of normal range, this morning a different receptionist (who I trust more) said it was my TFT ???? Frustrated doesn't come close ! Oh well only an hr to go :0

  • Good luck. You absolutely have the legal right to see your records/ have copies of test results. I recently had the receptionist happily tell be my results were normal (ie a diagnosis) but said she wasn't medically qualified to give me the actual result and lab range..... Through gritted teeth I said "just read them to me please ....." ;-)

  • LornaP, You've had a really rough time. I would have thought that frequent serious infections would be concerning enough to warrant investigation of your immune system by a specialist. If your GP doesn't agree you may need to consider seeing another GP at your surgery or changing GP practice.

    If your TSH is 53 you are undermedicated. If your FT4 is 53 you are overmedicated.

    Ask for the vitamin and thyroid peroxidase antibody tests already recommended.

  • Thank you so much, my appt is at 3.30pm and is with one of the best GP's there.

    I've written everything you have all said down n I'm going with the mind set of 'sort' me out or I'll go private LOL (Although I wont be rude.)

    Just to confuse me even more I just rang the surgery to ask them the results of the blood tests ( I believe I've had ferritin, full blood count, thyroid function test, B12 & Kidney function) I was thinking forewarned, forearmed et, well the receptionist was soooo rude and refused to give me my results because she's only a receptionist and can't possibly read numbers from a screen !!!!!! and told me that my kidney function is the one that's out of normal range, this morning a different receptionist (who I trust more) said it was my TFT ???? Frustrated doesn't come close ! Oh well only an hr to go :0

  • Lorna, It drives me mad that I can't see my results prior to an appt after GP has reviewed them. It's so much easier discussing issues with the results in front of you.

  • Morning ! Well my GP was fab, as agreed to all tests i need but it turns out my thyroid this year has completely turned around, I've now got a severe overactive thyroid with my FT4 being 53 ?!?!

    In some ways I'm so relieved that there's an answer to why I feel so bad, but unfortunately the weights not falling off me (??) I feel thats so unfair LOL !

    Although I have lost 11lb since the middle of May but I have been making an effort to up my exercise and eat less, but until that point I was piling the weight on!

    The thing that really confuses me is the fact that I've been on 300mg levothyroxine for at least 3 years and have always been in the lower end of tests, in January this year my regular test showed that I was in the higher bracket of normal so decreased my meds to 250mg - yet my thyroid has gone into overdrive !

    Has this has ever happened to anyone else at all, or does anyway know any reasons why this could have happened? My GP is stumped too !

    Thanks in Advance x

  • Forgot to add, that my VitB12 is just in the right range 207, my iron is 16 and everything else was exactly where they should be, my GP was really fab ! Is it worth me taking VitB12 at all ?Or will that have an effect on my thyroid and my next test in 6 weeks x

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