No help at the Doctors!

Hi everyone,

I've just been back to my GP (but saw a different one) after finding out from my ENT consultant that I had high anti-bodies.

I went armed with lots of info from thyroid.uk website along with a list of all my symptoms. Unfortunately I feel like I have got nowhere. He insisted that my readings were normal and I don't have a thyroid problem and told me that was the problem with looking on the internet! I said that the ENT consultant had pointed out that I do have a thyroid problem as I had high antibodies - but no, he doesn't know what he's talking about as he's an ENT Dr :/

The list of symptoms wasn't looked at but he did ask about my symptoms. In the end i said well if I haven't got a thryoid problem - what is it. He ruled out fibromyalgia and depression (which was his first suggestion!). He has begrudgingly agreed to do a repeat blood test but is only testing for antibody levels. I managed to get some of my previous test results - not sure if it is all of them but this is all he could provide.

November:-

Serum TSH level 5.55 mu/l (0.3 - 5.00) "High"

Thyroid peroxidase antibod lev 141 ku/L (0-9) "High" - Positive TPO titre confirms an autoimmune thyroid disease

January:-

Serum free T4 level 10.5 pmol/L (7.0 - 20)

Serum TSH level 3.58 mu/L (0.30 - 5.)

I'm really confused to be honest. Do I have a problem or not? I know that I'm not imagining my symptoms so feeling really frustrated.

So sorry for the long and probably garbled post!

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24 Replies

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  • Yes you do have a thyroid problem, but it seems most doctors would die rather than admit it. I was desperately ill with a TSH of 4 & antibodies at 1800 so you must feel dreadful. I got nowhere with GPs or an endo so had to treat myself. Hopefully you will have a better outcome, but at least be reassured that you are not imagining it!

  • Thanks HarryE. I do feel pretty rubbish (mainly its the tiredness that gets me). I think for now I just need to wait for the repeated antibody results. I'm assuming that they won't now be normal - so not sure where I go if they're not. I've just looked at the cost of private Dr's and its very expensive (with the added cost of living on the Isle of Wight so travel costs to add in). Thanks for the reassurance that its not just me!! I think I need to do some reading up because I'm still all really confused by it. Thank you

  • Please could you tell me what the private costs were roughly as I feel I am going to have to go down this route too!

  • Sorry I know this post is three months old or so, but could you tell me what home treatment is available as you mention treating yourself. Thanks

  • Hi, I buy my own meds & get my own blood tests done. It's not the way it should be, but I literally had no choice

  • Hi HarryE

    I would love to find out how to do this and the source you use for the medication. Would you mind sending me a personal message with details.

    Thanks so much

  • Please read my replies to you on an earlier post. Your TSH will fluctuate as you have Hashimotos. Time to have your tests done privately for the B12 - Ferritin - folate - Iron - VitD as these will all be low with Hashimmotos. You can have tests done through Thyroid UK with a discount. You go to your nearest hospital for the blood tests and then they are posted - so no travel involved....

  • Marz thank you I didn't meant to disregard your replies - I think I'm just a bit all over the place at the moment and really confused and frustrated (doesn't take much to confuse me!). I've had a look into the private blood tests and at this time I just don't have the money to be able to afford to do them. When I get back from work I'm going to have another read through everything and hope it all becomes a bit more clear. I have the repeat test for the antibodies on Friday and I'm wondering whether to try yet another Dr to see if they would be willing to run the tests you've suggested. Thanks again for your response.

  • Sorry did not mean to hassle you - I just answer things as they appear. I just referred back to make sure I wasn't repeating myself. I am suspecting the fatigue will be as much to do with the LOW Iron/Ferritin/Folate/B12/D as it is your thyroid. Unless all those things are near the top of their ranges then the thyroid hormones don't work anyway - however much medicine you take.

    I didn't think for one minute you were disregarding my replies. Having been on this forum for over three years - I know how confusing it is for many people - and overwhelming too. I was once that person and now bang the drum daily for what needs to be done to start the journey to wellness for people :-) - it just becomes a little frustrating when people seem not to be taking notice. I do not think you are one of those.

    Good luck with the tests. Anti-bodies rarely vary that much. Mine are still over 800 after years of treatment. It's your health at stake - not the health of the surgery - so insist these tests are done as you cannot afford to have them done privately. I am a pensioner living in Crete - so do know how money has to be spread thinly - but I do prioritise my health whatever the cost. I do not have Private Insurance so I teach yoga to cover my bills and pills :-)

    Hope all goes well....

  • Thanks Marz and don't worry I didn't feel you were hassling me. As you say I think its quite overwhelming to start with and the reminder to read through your original post was helpful as I can see there were bits I missed! Once I've got the kids to school in the morning I'm going to set some time aside before work to have a proper read through.

    I don't think from what I have been reading that the anti-bodies are going to be a great deal of use. I'm pondering whether it would be worth me calling the GP and asking if they are able to amend the tests on Friday to include the B12 etc, rather than having to shout for those again! I have a feeling judging by my experience so far that I won't get anywhere so may just wait for the antibody tests.

    I'm more than happy to pay towards my health if I need to (although it would be nice to get sorted without having to!) but the dreaded car MOT is due next week and there isn't the spare cash unless we don't feed the kids ;) I think I need to get a bit more outspoken at the Dr. Thanks once again for your help it is much appreciated :)

  • :-)

  • I need help with the drum. Just newly diagnosed TSH at 4.91, antibodies at 538. Doc wants me to take synthroid. 25 at my insistence. What will make the antibodies go down and for my body to stop killing my thyroid (hashimoto's)? I also started getting off gluten, all grains, dairy andd shooting for sugar soon but it is super hard. I'm so ffrustrtaed as I have extreme fatigue and have a full time job. Any advice you have, I'd be grateful to hear.

  • Think it would be best if you posted this on a NEW post and then lots of people will reply.... :-)

    Have you had your Ferritin - Folate - Iron - B12 - VitD tested ? These need to be OPTIMAL for you to be energised and feel well :-)

  • I will happily do this. I currently live in France. Could you tell me what the procedure is and where you are based?

  • Not sure to whom you are asking this question ?

  • It would appear you have an Autoimmune Thyroid Disease called Hashimoto's.

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

    thyroiduk.org.uk/tuk/thyroi...

    The waxing and waning of your TSH is due to your antibodies attacking your thyroid gland.

    So, you can tell your GP he is wrong about the internet as the site you have used is recommended by NHS choices.

    Email louise.warvill@thyroiduk.org and ask for a copy of the Pulse Online article by Dr Toft, who was President of the British Thyroid Association. In it, you will see that if the person has antibodies they should be given levothyroxine to help 'nip things in the bud'. Take the copy to the doctor and discuss with him the prescription for levothyroxine. A

    When on levothyroxine, which will be gradually increased, always get the earliest appointment for your blood test as they rely too much on the TSH instead of our clinical symptoms. Always get a print-out with the ranges for your own records and so that you can post if you have queries. If not already done get a Vitamin B12, Vit D, iron, ferritin and folate too we are usually deficient.

    Don't take levothyroxine on the morning of the blood test (which should be taken each day with 1 glass of water as it can skew results. Don't eat for around an hour as some food interferes with the uptake .

    Regards

  • Thank you Shaws thats also really helpful. I will email for that article as it may help back me up at the Drs. As I've just said to Marz I can't afford to do the private tests at the moment but when I get the results for the repeat of the antibodies I will hopefully get them to do those tests also!

    I appreciate your time and patience!

  • You need to have your blood test done as early as possible in the morning because TSH varies during the day, and is highest first thing in the morning. You might find TSH is done as well as the antibodies.

  • Unfortunately it is just the antibodies they are doing - I've seen the request sheet. My appointment is at 10.40 - is that likely to be an issue for the antibodies only?

  • Hi again. I've been back to the Dr's today for a repeat antibody test. Unfortunately they couldn't get any blood out of me (despite 3 different staff trying). The positive side to the wasted journey was that I knew the nurse that I had the appointment with. She was able to recommend a Dr in the practice who she thinks will be sympathetic and listen, and also went into the system and got me an advance appointment for a couple of weeks time. She also printed off the rest of my blood results that my GP hadn't given me.

    It has been suggested on here that I have my ferritin/folated Vit D tested. Whilst they haven't all been done the folate was tested and was 7.9 ug/L (no range on the print out unfortunately, saw the screen but I can't recall it but remember thinking whilst it wasn't at the bottom of the range it wasn't up to the middle either). My current B12 was 271 ng/l (again no range but I saw it on the screen and I think it was 180-900).

    Do they sound like they are too low or OK? Many thanks once again.

  • Yes your B12 is rock bottom - how are you feeling ?

  • I think "Pants" would be a good description of how I'm feeling! Slight progress. Managed to see yet another GP who was actually really lovely and sympathetic and didn't make me feel I was wasting her time.

    She is going to test for Vit B12 and folate, Full blood count, ferritin, Free T3, FT4, TSH and Vitamin D but is waiting until mid April as doesn't want to repeat too soon. In the meantime I'm still feeling really low.

    Have been for other blood tests today (not sure what they were to be honest) as ended up having to see out of hours GP yesterday as have come out in a petechial rash. May be completely unrelated but have heard this can be linked to autoimmune diseases? Feeling particularly tired and bad joint pains today!

  • Are you treating your LOW B12 ? Have you read anything about B12 deficiency - can post some links for you....

  • I am in exactly the same position of you. My results are similar and I have practically all of the symptoms. My GP also says that I my levels are normal and won't help me.

    What is your next step?

    I am going to try and see a specialist and privately as being fobbed off eventually wears you down and I think this is the NHS tactic to make you give up.

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