No diagnosis but an Endo referral

Hi all. Had my second appointment with my GP today. Last lot of tests were

TSH 9.4 (0.5-4.5)

FT4 13.36 (12-22)

A few liver and creatin results a bit out of range.

New results I don't know exactly, she would not let me have them saying until all tests were done it's best to not use them because we don't yet have the full picture. Our surgery does not support online blood results yet.

What she did say was that my B12 was 167 and bottom of my range was 168 so it was just a tiny bit low and that my antibodies were very high. I asked with TSH of 9.4 and very high antibodies was it not Hashimotos? She looked surprised and asked where I heard about that term, I said Thyroid UK, been reading up since she said told me she was testing for autoimmune Thyroid disease.

Basically she is not happy making the diagnosis or starting treatment because Thyroid and liver tests were all 'just out of range' so she gave me tablets for high blood pressure (which is high), told me to come back in 2 weeks for another blood test for Kidney function and a BP re test. She is referring me to an Endo and said that there is something wrong with me for sure but she wants to be very sure of what and is working on eliminating things one by one. She doesn't kniw how long the Endo appointment will take and they will contact me. All the waiting around isn't helping that high BP sigh!

23 Replies

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  • Geez I think that this doctor is not a keeper. They interpret slightly over range on liver tests as no further action often so she seems to be applying this to a very out of range TSH. See someone else in the practice or move surgery. I think that you know exactly what is wrong and what course of action should be followed. A competent GP should have been able to diagnose you on those results.

  • Hi cwill, It's a small village surgery and there are 4 doctors but usually only one is there at a time because they all work for several small village surgeries in the area that are part of the same practice and they rotate between them. You just get to see whoever is on on the day you ring, you don't really have your own regular GP. I can try to find out next time I need to go if she is in and maybe find an excuse if she is and re book to try to get someone else.

  • Your not 'a bit low' for B12, you are dangerously low, and she should be testing you for Pernicious Anemia. B12 should be at least over 500, yours is under-range. She certainly isn't a 'keeper'! She knows nothing. Please see someone about that B12 as soon as possible.

  • Hi Greygoose. They did test for anemia but she didn't mention that result at all so I'm hoping that means it was in range. I really hope I get a good Endo. What could I do for now to help my B12 please? (Vegetarian options)

  • I think you should get hold of that result before you attempt to do anything yourself. You should be having B12 injections.

  • Pernicious anaemia and iron deficieny anaemia (which is what they mean when they just say "anaemia" are not the same thing. It's worth popping across to the HU Pernicious anaemia society group for advice.

  • These were what they tested for last time healthunlocked.com/thyroidu...

  • Hi again

    Didn't realise about the B12 when I wrote pm. Yes this needs urgent attention. You could ask for the MMA test or URGENT referal to Haematology or post about this on Pernicious Anemia forum for their advice. GP didn't say anything about B12 injections then ?? You do still need your Folate testing though. Did she do Ferritin and Vitamin D?

    Pop back to GPs sometime and ask receptionist for print out of all your blood tests results. Mine charged 50p. If refused ask to speak to the Practice Manager. You could also ask for referal to Gastroenterologist re the liver but maybe things will improve once you get on your Levothyroxine and Pernicious Anemia treatment.

    X🐥

  • I am in with the nurse in 2 weeks for those new tests and she's very nice and printed my bloods for me last time. I'll ask her again and foregt to mention that the doctor wasn't keen on me having them. I'm just not very assertive and it's kind of stressing me out to argue it with the doc to be honest.

  • I agree. Best to wait till you see someone you know to be agreeable/ approachable. No point if you have to argue. Stress won't be good for blood pressure or general well being. As you are Vegetarian and not vegan you could get enough Vitamin B12 in your diet from eggs, milk and yogurt I have read.

    I saw a good article on B12 on the vegan society website. Worth a read.

  • Thank's Mary. My favourite food is Cheddar cheese, I swear I am actually addicted to it, and I have skimmed milk every morning in coffee or cereal. I could certainly add more eggs to my diet though. I was also thinking that adding a pro biotic yoghurt drink a day wouldn't hurt either.

  • Pro biotic drink really don't have much "pro" in them. You would be better buying pro's from a health store or on line.

    Jo xx

  • It sound like your doctor is not moving fast enough and it's causing more worry. You need to get this sorted more quickly. Your thyroid is not 'just a little out of range' it's quite out of range and so is B12, much too low. Most people with thyroid conditions find they need to be top of range with B12 to feel well. You are entitled to all your blood test results. You don't need to argue, it's your right. Your surgery receptionist should be able to give you a print out of your blood results and other results. They ought to give you a password to log onto your blood results online. It is a national initiative so I don't think your surgery can refuse to participate. In any case, if there is another doctor you could see, I would go and see someone else and show them your results. You could be waiting a long time to see an Endocrinologist. Why can't the doctor ring up the Endo and get advice for treating you in the meantime? She says she is eliminating things one by one, well ask her what she has eliminated so far. Ask her why she doesn't want you to see your results. Ask her what she still needs to eliminate and what other tests need to be done and why you can't be treated now.

  • Hi Nanaedake. Thanks for the suggestions. I do have system online and can get appointments, repeat prescriptions etc.. with it but my parctice does not yet have the ability to offer test results online. The recptionist rang whoever manages it for me today to see why I get an error message with 'this service is not available' and that was what she was told, just that our practice doesn't have the ability yet. It's not that they are blocking me.

    Maybe the doc just doesn't want me googling things and worrying myself more, I don't know. I don't know why she isn't ringing the Endo. 10 minutes just isn't enough time to cover all my questions really when I am not prepared. I need to write these suggetsions down and be ready for whoever I get next time.

  • Angie

    Please can everyone note that EVERY GP PRACTICE in the country has the ability to share test results and some part of your online record. There is an additional application form and your account is then enabled for you to see this extra information. Every GP practice had to offer this facility by MARCH 2016. IT is part of their GP contract. Please do not accept this.

  • Thank you DJR1 but I don't know what else to do. The doc said she didn't want to print the results because there are a lot and because she doesn't think it's a good idea to see them without all of the information and there are still some tests to be done. She wouldn't last time I asked either. The receptionist phoned round for me to see why I can't access my results on 'system online' and she was told that they are not set up for it yet. If there is another form the staff don't know about it. There is another records app I have seen called 'evergreen' but the ID and passphrase I was given do not work on that app.

    I don't want to start being demanding and getting a rep for being difficult because it's a fair old drive to the next nearest Dr. surgery and I might be going there for a long time. My best bet is the friendly nurse or that I will get a different doc next time I go.

  • Your doctor is breaking the law by not giving you your results. It doesn't matter what excuse she is giving. They are yours by right.

    Jo xx

  • Just looked up my local hospital endo dept. It's actually just a part of the diabetes and endocrinology department. They make a lot of fuss on their website about the diabetes care and how they have Consultants along with two specialist diabetes nurses, three specialist podiatrists and a dietician to provide the diabetes service for outpatient clinics. They have a small section at the bottom of the page for the fact that they also have an endo clinic that covers thyroid, metabolic, adrenal, petuitary and sexual dysfunction disorders. It's in the maternity and neonatal building.

    Is this usual? It feels like they tagged Thyroid dissorders on as an afterthought.

  • Unfortunately yes, thyroid care is low, low on the list for the NHS and not on the Government priority agenda. Diabetes is a priority because one of the national government priorities is obesity. Most hospital endocrinologists are specialists in diabetes not thyroid care but you might get lucky. You should be able to google the doctors and find out a little more about their specialties.

    You need to be prescribed Levothyroxine for your thyroid and any doctor can do that so you don't need an endo for that, I don't understand why your doctor is holding out so you need to find out what the hesitation is. If you have high antibodies then you've got Hashimotos and your doctor should be able to diagnose that too and you need to know so that you can manage your condition better. If your kidneys and liver are not functioning effectively at the moment it could be due to your being hypothyroid so you need to ask the GP to get advice from an endocrinologist post haste so they can treat your low thyroid immediately. They can search the British Thyroid Association website to find the list of thyroid specialists to contact for advice. Or you could look one up yourself and find out who is in your area and then use the choose and book system to see an endocrinologist of your choice but in the meantime your GP needs to start treatment for hypothyroidism.

    If you've got pernicious anaemia you need to see a haematologist as the endo won't be able to do the needed tests. I would get all your test results and take them to another doctor in your practice. Book a double appointment because you have two issues to discuss, your thyroid condition and your low B12 and vitamin levels. Or book two appointments on consecutive days, whatever your surgery allows. Write down all the things you need to ask and work through the list with the doctor.

    SeasideSusie on this site has good advice about vitamin levels so please read her replies to other people's posts on vitamin levels and treatment. You can find out more about B deficiency from the Pernicious Anaemia UK website or contact them for advice about how your doctor should be investigating and treating according to current guidelines then take the up to date information to your doctor and ask what he/she intends to do.

  • I'm not even sure what she refered me to the Endo for to be honest now that I have had time to think, I'm assuming it's thyroid because she did say last visit that one thing she could assure me of was that I am definitely not diabetic.

    It's possible it could be obesity management I suppose I'm pretty big after years of yoyo dieting and being unable to maintain any weight loss. I always end up bigger than when I started a diet but I think she did say it was that she wanted another opinion when I asked her could it be Hashi's with TSH and antibodies being high and with being tested for liver function. I said I had read that Hashi can effect the liver.

    At no point was any e-referal option or online booking mentioned but since the practice doesn't even have test results available online yet they probably don't have that set up either. We only just recently got rid of plastic cards with numbers on for your appointment turn and got an led message board to call you in. 😏

    She just doesn't seem to want to start meds until I go text book over TSH 10 and under 12 FT4. Or until she finds something else to explain my symptoms. Maybe because I have high BP and hot flushes and not the more usual low BP and cold intolerance, maybe it's my lack of a goitre throwing her off. I will try to get a better answer from her as to why she doesn't want to at least trial me on Levo.

  • Yes, good plan to get more information. Find out what she's referring you for and find out why she won't start you on thyroid meds. Get some definite answers and more information. Waiting until you are over 10.0 to treat with Levothyroxine is right out of date and is not the current advice. See the British Thyroid Association website for up to date information about treating hypothyroidism. This is the website the Endo's and Thyroid Surgeons recommend so your GP should recognise it.

    I don't know anything about high blood pressure so maybe someone else on this site will comment.

    At the moment you are second guessing your GP's reasons but you need firm answers and clear explanations. You can't make any decisions about treatment until you have all the information and are clear about the treatment options. You could ask her to explain her hesitation to treat and explain your treatment options so that you can make some decisions about your care.

  • You are entitled to a second opinion too so you could ask your GP to refer you for a second opinion. Thyroid UK have a list of endocrinologists that you could ask to see. Contact Thyroid UK to get advice and the list of endos.

  • Sorry for what u are going thru. To me this is an emergency...butto say u have to wait another 2 weeks is not a good idea. Iwould suggest ypu check for private medical outfit and get this situation resovled immediately.

    Sorry but like ur docter said get good rest .

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