Not heard from endo

Hi, I have been under the care of an Endo since January last year because the GP suspected I had vitiligo when she examined me. At the initial consultation I was tested for Lupus and RA both of which were ruled out through antibody tests until I was told I had elevated Anti-TPO antibodies that my GP had looked for, but not that I have Hashimoto's (I found out on here instead). I saw the Endo again in May for a more urgent appointment because of the problems gaining weight even though I didn't change my diet and she then thought that I had adrenal insufficiency. The test for that was normal. She put in her letter she copied me into that she was happy that my Free T4 was in the top end of the range thanks to the T4 medication (at the time) but that I had a high TSH. She agreed to continue to follow-up with me as agreed and that I would be waiting on a letter from the endocrinology department. I called the endocrinology department back in August about when I could expect to receive a letter about my follow-up. For my last appointment in May I was sent a letter 3 months in advance about it. The receptionist told me the hospitals don't go by this procedure anymore but my urologist sent me a letter about my follow-up appointment for April and that was six months from the date of the letter!

My endo follow-up is meant to be due in this month sometime and I very much doubt I'll be seen by the end of the year especially since I've received no letter. I don't understand what is going on and I'm now worried they've discharged me because of how much better my results now look and that they now know about them or that I keep going back to my GP about the other problems that are cropping up if not for how tired I feel - and the low energy has been going on for about quite a few years, even before I was diagnosed. Am I wrong in thinking that the endo just doesn't seem bothered anymore? She works part-time and seems to be on holiday whenever I call her department to ask for a callback - so I can understand a slight delay but I feel as though I'm just going to be waiting around forever. I have so many other things to ask and I don't know if I feel up to trusting this consultant if her receptionist keeps saying she'll pass on my messages to her and I get no callback. :(

56 Replies

  • Hi,

    Phone the hospital and go through to your Endo's Secretary. The secretary can advise you if you are signed off the Endo's clinic or not. Hopefully not, but if you have been you will need your gp to refer you again.

    Seems to be common for Consultants to take peeps off their clinics soon as pos. (they work under nhs budgets and part of that includes keeping their patient numbers down in their clinics). It's all wrong but seems to be the norm

  • Thanks for reply. I've tried calling the endo's secretary and most of the time I don't get through first time. The last time I called the secretary she said she couldn't find me on the endo's clinic because they don't send out letters a few months in advance. But my suspicions were raised more when my urologist sent me a letter for a follow-up in April! Is it possible that the departments just have a different way of doing things? Is it asking too much to be referred again?

  • Hi Starla,

    I'm 99% certain the Secretaries will have you on their system if still in the clinic (I know nhs systems).

    Normally Consultants write to patients gp to advise of removal from clinic. May be an idea to check this with your gp and go from there. Can your gp help do you think? My gp has been tons more helpful than any consultant but they have restrictions on them sadly.

    I've had no end of probes with consultants, not a single letter with corrects info, unhelpful etc.. Maybe I've just been unlucky (apart from one excellent).


  • Hi, I don't know if I'm still on the system or not. I know that when I called the main hospital desk they asked for my NHS number which I gave to them and they had my details. But I think my details would just pop up on there anyway. So far as I know I've been to my GPs and I've had no mention of being removed from clinic. Is this something they would openly tell me?

  • Hi again,

    Yes you would pop up on the hospital system just through being registered with them.

    Would you feel comfortable about seeing your gp again about your concerns and at the same time ask him/her if the Endo has advised gp of being taken of clinic?

    You are perfectly entitled to this info, you have a right to know. Regardless, if you discuss all with your go it should then be noted on your records.

    Personally I would keep phoning the Endo's Secretary and just say 'I am phoning to ask if I am still on Dr ......'s clinic'. Believe me they have the info. Worth having the date of your last seeing Endo for them to look back on the appointment outcome. If that's fails check out with your gp.


  • I know that I need to get myself sorted because everyone who knows me is on my back about it and that I've been ill for so long that to them it's ridiculous. Not only that but I made my last GP angry because I was researching my illness online and she took that to mean I didn't trust her methods. The other GP I've been seeing has signed me off with fatigue but she's said it's a short-term solution and she wants me to make an effort to get on with my life. Can I write up a letter and take it to my GP to say that I want a referral to someone else? This particular endo hasn't got a very good reputation from what I've heard from other people with low thyroid.

  • Mmmm...I have had a similar situation. I am lucky that my gp goes with my suggestions based on my research (helped that my suspicions turned out to be correct twice).

    My Endo has proven to be 'pants'. Sometimes it's cos they just don't know things, but won't admit it. Some surely must be good!?!

    You have a right to request another consultants second opinion (that's how they see it) but generally they are on the same team and loyal to each other unless something is staring them in the face. Found that out myself, nightmare.

    Do U have a gp who you feel happiest with? If so maybe only ever see that one. Clearly you need something medically checking, be open with your gp, get him/her to listen & help.


  • I think the GP I see on Tuesday is someone I would feel happiest with but I don't know how to go about talking to her about the things I'm worried about. When I go to appointments I forget the things I want to say and whatever comes out of my mouth is round the wrong way. :(

  • Write it down, I do (brain fog & rubbish memory with details ).

    Be yourself, be honest & say you find explaining things hard. A good gp will listen.

    Let me know how goes x

  • Yes, I will. :) I just hope they don't mind reading more than a page of stuff. :)

  • Starla, you have been given some good advice. Perhaps it would help for you to read about others experiences. If you haven't already done so, have a look on the web site. It has helped me understand what is happening to my body.

    It is very difficult to discuss things with a GP or any Dr who is not happy when you question their knowledge, I've tried it and won't do it again. With the help of this forum and the site I am treating myself. But you need to do lots of reading on these sites to gain knowledge and confidence.

    Regarding wether you are still on the endocrinologists list at the hospital, as you have already tried talking to the secretary, I would advise you to contact Patient Advice + Liason Service (PALS) at the hospital. It is their job to sort out patient questions or problems and they are usually very helpful. Look on the hospital web site and you will find their contact details.

    Keep talking to people on these sites because it is too difficult to try to deal with this alone.

    I hope this helps.

  • Hi, I already contacted the PALS service at the hospital and they have told me to contact the endocrine department - which I did. So I left them a message for them to get back to me and I get no callback and then I gave up.

    Because I've been relying on the GPs and consultants as they are the ones with the knowledge I'm losing my confidence in them and I feel I'll be left with no one.

  • Starla, sorry that so many women in the UK are put off with minimal treatment for this serious condition. Many have been forced to learn all about their condition even as the condition makes it difficult to learn anything.

    Here are a few short videos that are easy to understand.

  • Thanks for the clips. I did some personal research on serotonin but I gave up because I felt my theory on it was just too far-fetched and I didn't want to sound like a scientist. ;)

    Because I had trouble sleeping at night and that since taking the T4 at night I became insomniac and had really vivid dreams/nightmares. I didn't want to get up in the middle of the night and stay up until the morning every single day so I looked for potential natural cures to help me sleep. I found that almonds were high in melatonin and so I slipped that into some hot chocolate and drank it before bed. Within something like 5-10 minutes my eyelids felt heavy and I slept with no problems. I researched into it the next day and found that almonds are high in melatonin. Since I figured that my cortisol is higher at night and lower in the mornings and that melatonin acts oppositely to cortisol. In a way I felt that the melatonin in the almond milk canceled out the high cortisol levels thus inducing a sleepy feeling after drinking it. I did read that serotonin does fit into this somewhere and then after that I gave up when it didn't make sense anymore. I don't drink hot chocolate with almond milk every night because for some reason the sleepy feeling doesn't always happen. 2 nights a week usually does it. That probably sounds really weird but whenever I ask any doctors (since I have mentioned the difficulties sleeping since taking the T4 at night - I thought the T4 was to blame) they just shrug.

    Prolactin was tested by my Endo and was normal. But it's at the low end and so could have been missed, could I be right? It was 251 (0-700).

  • Starla, I'm glad you got a little something out of the clips. You have to get the big picture about hormones in particular. T4 produces very little activity since it is a storage hormone and goes through the liver to be processed. Chocolate contains caffeine so I don't think it helps when going to sleep.

    The doctor mentions that having low serotonin levels isn't "'fixed" by taking serotonin which is found mostly in the gut and antidepressants try to push it to the brain which also doesn't work that well.

    Thyroid hormone is found in every cell and your brain and heart need good amounts of T3 which is the result of T4 being processed correctly. This is the aim of your treatment but as you can imagine, if your T4 isn't working for you, the rest is not going to either. I think that is where you are at. Your T4 being at top of the range is meaningless if all it is doing is producing Reverse T3 instead of Free T3.

    There are things you can do yourself (trying to educate these GP's is futile) and that's why I urge you to read and learn yourself. Your diet, some supplements and light exercise can go a long way.

    Best wishes!

  • Thanks for your help. Is it a good idea to write things down and what things would be best in being written down? I started two symptom diaries - the reason I have more than one is because I forget to write an entry for the day after and then I miss out a few days' entries. Eventually I'm left with huge gaps between entries. I want to commit to doing a health diary now but don't know where to start.

  • I'm not sure of the importance of symptoms unless you are still looking for a diagnosis. I used to think if you keep stressing your symptoms to convince your GP about what you have, it might help. After years of hearing few results in doing that, I think the best way to go and to spare your health, is to just use the GP to monitor your treatment and if they refuse to offer you what you need, to get your own hormone after determining which works best. Let the NHS do your blood tests.

    You are probably not at that stage yet and if you still have hope that you can get your GP or Endo to prescribe what you need then I'll go back to what I said at the beginning. Stress your symptoms over and over, your swollen lids and sunken eyes. But as you mention, neurological symptoms are hard to prove to anyone. They have to take your word and we know how that works. Weight gain they fluff eat too much but a hypothyroid uses 17 less calories per hour (because of lowered metabolism) while just sitting than normal people do. After 24 hours, you can see why you are guaranteed to gain weight.

    You know T3 raises your metabolism and fights that issue. It is sold over the counter as a weightloss pill in other countries and many just order that. It is also very cheap in other countries but not in the UK. This is what you are up against.

  • Ok, so the only times I need to see my GP are when I need my blood tests done for the thyroid and if I need to mention more outward symptoms. I keep assuming that because I feel tired most of the time it would be outwardly apparent but this doesn't appear to be the case. I guess with the neurological symptoms it would be best to keep these to myself because then I'll probably be prescribed anti-depressants and pain medications as that's happened to me in the past. Can I ask them to be signed off when I feel rough or are they likely to refuse that?

  • Not knowing how your Endo is going to react, it's hard to say. For one thing, you probably have gut issues since the other things you mentioned are also autoimmune. That's why I said that diet....maybe gluten free ....may help. I think you very likely have adrenal insufficiency and your cortisol is always playing catch up, but if you only had a blood test because they won't do a saliva test, it is hard to know for sure. The saliva test looks at cortisol levels throughout the day and tells you for certain that you are too low in the morning and too high at night. Cortisol can block T3. Lots of people here do their own testing through Blue Horizon but some GP's will not even except the results.

    My theory is that many women start having problems long before real symptoms show up, and it has to do with glucose and insulin. So sugar and starches cause trouble.

    This is why GPs don't want to go any further than just ordering T4, if they even do that. And later, when female hormones start to act up, things get very complicated.

    What do you think your chances are for making progress with your Endo?

  • I very much doubt I'll make much more progress with my Endo. I remember receiving a call from her one day and because she wrote in the letter she copied me into regarding that I had no signs of Reynaud's (which I do get when it's wintry and my fingers and toes go numb and white) I was immediately annoyed that she could have missed this. When I told her I do get Reynaud's she got huffy with me and sounded as though she wanted to end the phone call right there and then.

  • Starla, do you notice how society as a whole just seem to be slouching. I don't entirely blame doctors since they are also stuck with following guidelines or jeopardizing their jobs. They seem to turn off the humanity part. Look what happened to Dr. Skinner. I hate to sound so pessimistic but some of these posters have lost their entire future because of the failure of the NHS. They've had to give up their studies and/or their jobs so I urge people BEFORE they become so ill they can't even help themselves. The trouble with thyroid is they become full body breakdown since every organ needs it. Whatever your particular vulnerability, your symptoms show up. The impact of this is a downward spiral. Many people are going to T3 or cytomel or cynomel but I see there is a shortage when it is prescribed. It would be ideal to have a doctor prescribe a natural desiccated thyroid hormone like in the old days and offer some adrenal support and checking cofactors from time to time.

  • Mineral and vitamin cofactors - I've only been tested for folate, Vitamin B12, Vitamin D and ferritin. Can a GP order the other blood tests themselves? I've looked at Blue Horizon and they charge a lot for an entire panel and they're spread over two or three panels I believe. I'd like to assume a GP can test for every single vitamin and mineral themselves.

    The GP has said many months ago I don't have gluten sensitivity because I get constipation when eating wheat although lately I've been getting wind.

    Hypoglycaemia - I get that when I miss meals but my glucose is always normal when checked. So I don't know how that works.

    Would an NHS GP know anything about malabsorption? Since I'm seeing the GP tomorrow about the other symptoms I have that have cropped up I'd be happy to mention malabsorption as a probable issue if they know anything about it.

  • I think healthcare has become enormously expensive and needs to have some sort of regulation. Conventional medicine will only go so far. I have followed alternative doctors for plenty of years. They are the ones who care about dysbiosis and nutrition that conventionals don't have time for. Do you notice how they leave the room as soon as time is up? You really get better responses from the internet.

    I'm not in the medical field but I've learned from reading articles by doctors who look at research (when there is some) so I'm no expert. Your body regulates nutrition very, very closely.

    Take iodine for example. This is such an important mineral when it comes to thyroid and breast since they both use different forms. We used to get it from soil and vegetables but it's fairly depleted. They iodize salt and it used to be in bread but in some countries they began using bromides (probably cheaper) but not good for thyroid. Fluoride has also replaced iodine receptors. Once you have thyroid disease, it is not recommended to try iodine supplements though. Too late.

    This is the stuff that alternative doctors look into and report. I truly believe that is why we have more incidence of cancer, breast disease and thyroid disease. Our bodies are wonderful and will put every effort in producing what it needs to keep the status quo. It cannot produce vitamin C or essential fatty acids so you need to eat foods that contain them.

    You can ask about leaky gut now that it is becoming more prominent. Antibiotics have played a huge part in causing it killing off good flora in the gut. Sugar also has fed candida so overgrowths are also part of it.

    All that conventional medicine offers are pills. It is far better to learn how to do it and improve your lifestyle.

    Diet really does matter

  • I've speculated a lot about what would have caused me to have this illness. Anti depressants, having a diet with gluten in it, multiple food sensitivities I wasn't aware of etc. One thing I did consider: I haven't really eaten anything with iodine in it but I remember getting a radio contrast injection with iodine in it. Also had an op where I was intubated and I then thought that the intubation might have damaged the thyroid. Family history of autoimmune. There are just so many factors.

    Maybe when I go to this appointment tomorrow I could say that I suspect leaky gut and would like it looked into. I don't know what they'll recommend, being mainstream doctors. Possibly medication I guess.

  • Starla, I'm sorry to hear the sad tone in your post. I'm sorry that it does come to a certain realization that there are so many factors that have gone by the wayside that used to keep us well. There are so many toxins all around us and the body can handle quite a bit of that but it takes work and in the meantime you are trying to have a life and keep a job or whatever activities you have. I'm sure I am older than you and I am pretty active but I'm sure I couldn't work an 8 hour day anymore and the kids are grown so I don't have to.

    Stress is probably the biggest factor working against us. When life was simpler and you could at least get a good night's sleep, it was easier. But now everyone wants to rely on a pill and certainly there are good medications out there but there are many negative implications with drugs.

    I'm also sorry if you feel overwhelmed by all this. I'm happy to help you become aware but take it one step at a time. If you truly have Hashimoto, you will need the hormone and it may right some of the wrongs going on. Your body will always fight to get well with the right tools no matter what age you are.

    Don't give up. Try reasoning with your doctor to help you. Their job is not easy either. Good luck tomorrow. Let us know how you make out. Many are in the same exact boat.

  • I'm 30 years old. I have no job because I felt too unwell to stay in it. I thought to have Hashimotos I would need to have elevated antibodies, which I have been told I have. If there are other ways to test for Hashimotos I'd be happy to look at them. I feel as though I have no life at the moment because most of the time I'm tired and drained of energy and spend all

    day at home.

  • I think everyone has SOME antibodies. There are ways of telling current attacks FROM previous attacks I think. But It is so likely, I wasn't even told about antibodies twenty years ago but was pronounced as having hashimoto's.

    The videos come from functional medicine and they would seek to find exactly which antibodies you have. It may change how he would treat rather than change the diagnosis. He has a lot of videos on youtube, 22 of them all about low thyroid.

  • Since you recommended these clips I've looked them up on YouTube and they're now appearing in my recommended list. So I'll look at the other ones when i'm back on there. I was tested for anti TPO and anti TG. Anti TPO was high and out of range and Anti TG was at the high end of the range.

  • I think it's pretty certain that you have autoimmune thyroid as in Hashimoto's. That is the man's name who discovered it.

  • I think the best thing would be to insist on a trial of hormone. If at all possible, Armour, but even thyroxine for now. You can always make changes later.

  • I've been taking thyroxine at a 50mcg dose but it gives me insomnia at night.

  • I forgot in your first post that you were taking thyroxine already. When you begin taking T4, you should start low (25 or 50) and every few weeks move up until you find what is helping you, which should be your optimal dose. Maybe you have been on that small dose for too long.

    When I was on Synthroid, I took half in the morning and half at night. I did the same when I switched to Armour.

    What happens when you take it in the morning?

  • if I take it in the morning I get more cold intolerance when going out and also quite jumpy in the evenings.

  • I don't know how long you've been taking T4 but I know the first few weeks, so many pains I had before, especially up and down my back, became worse.

    You know the cells must go through a dramatic change as T3 is now available. Maybe it's like coming back to life. Some feel that it might take a year for all the processes to take place. A lot goes on with hormones.

    But if you really can't handle thyroxine, plead a case for Armour.

  • Starla, Dr. mercola had this nice article about nutritional deficiency symptoms you may enjoy.

  • This information is really helpful. Thank you. I get the first 4 symptoms more often than the last one. The cracks at the corners of my mouth aren't sore but I always thought it was acne that always appeared there.

    I get hair loss on my scalp and body and I get random red rashes on my arms, legs and front. Never been tested for B7.

    Red/white acne bumps - always on arms and legs. I thought they were blocked follicles.

    Tingling/prickling in hands or feet - this happened to me last night. It felt as though the bottoms of my feet were on fire.

    Muscle cramps - in calves and feet. Happens more when I'm sitting which make me think it's a posture issue. But it happens when my legs are straight and I'm sitting up.

  • I take B12 sublingual spray and also a B complex. Magnesium (glycinate is what I take or a chelated one) is a common deficiency. For one thing your adrenal gland eats it up when stressed.

    Taking steps toward recovery might give you more hope. At least I hope so:)

  • I bought B12 lozenges, 1000mcg. They are the methycobalmin. Sorry, I have been taking the T4 since April of last year but I've been on the 50mcg dose since the end of September. I haven't got a B complex but I bought a multivit that contains some of the B vitamins.

  • Starla, once you start on T4, you should aim for an optimal dose and keep it there. Your test levels should stablize with TSH suppressed at around 1. Your pituitary will not be trying to force your thyroid to produce T4 since it will sense you have enough in your system.

    T4 always turns into free T3 and/or reverse T3. The adrenal gland I think determines how much free T3 your body can handle and that's why adrenal function is important but most of the process happens in the liver, etc.

    The free t3 reading is very important to be high in the range since that is what raises metabolism. That's why T3 receptors need to be open. (I don't know all the technical terms so it's a crude explanation.)

    I'm not sure anyone knows exactly how this happens.

    The high T4 reading merely tells you that you have plenty of hormone to begin but as you see by your own antibodies, there is plenty of interference there.

    It's unfortunate that they don't want to do some of these tests....just T4 and TSH....especially when you still have symptoms.

    Do you think you can get the tests with ranges included?

  • Yes, I think so. For the GP I have to ask for a printout and usually that's given to me with no questions asked. The private one that's being done as well, that lab has my email address to send the results to. The private one is to fall back on in case

    the GP lab doesn't include the thyroid hormones in their results.

  • Oh, this is awful for you; complete Catch 22! How on earth are you expected to 'get on with your life' when no-one will diagnose what's wrong with you or treat you?! How do these people get away with it? Ah - by not answering their phones and ignoring messages.

    Write to the blighters. Use the Endo's personal work email and request a read receipt, or if you only have a generic/departmental email address write an old-fashioned letter to this numpty and send it recorded delivery. Copy it to your GP. Ask what is going on (again). And request (again) clarification. Mention the number of times you have phoned and asked these questions. Mention how unprofessional you find this behaviour. Mention your MP (or, indeed, just copy the letter to MP), mention the Patient Opinion Website that you're going to post this experience of yours on as a case study, and if there's an Ombudsman for this bunch of incompetents copy them in as well.

    It's the hubris of these people that gets me. Grinding my teeth on your behalf, here :-(

  • Thanks, the Endo has no personal work email hence why I've been emailing the secretary who then forwards my messages on to the Endo herself. I might try the approach of writing a letter, sending it recorded delivery and copy it to my GP. I didn't think about writing to my MP and I didn't know about the Patient Opinion Website either. I'll see if there's an Ombudsmen too.

  • Here's the Patient Opinion website url:

    You go, girl!

  • Thanks! :)

  • Or, of course, you could go to the main Thyroid UK Website which has a lot of very useful information.

    On the matter of whether you have been discharged or not, I would have though that you would be notified if you have been discharged back to the care of your GP. That is common courtesy, but I know from personal experience that frequently this just does not happen. I would go to your GP and ask if the situation could be clarified.

    The suggestion of writing down a list of hings which are worrying you would be good. It might be good to say that 'other people have noticed' - doctors do like to say we are hypochondriacs, but if others are noticing, it can carry more weight.

    Marie xx

  • Thank you for your help. Not many people around me notice my symptoms when I'm feeling at my worst. Apart from my other half yesterday. I took my Vitamin B12 and Vitamin D supplements and he told I looked brighter and healthier. Today I feel completely the opposite. Every time he hugged me or kissed me I was behaving like a rottweiler. I feel as though this illness is invisible and that the only one who can see what's going on is me. Doctors mostly write on their records (when I see them) that I "look well". I look in the mirror every day and see dark circles and puffy eyelids. I don't understand how someone with puffy eyelids and dark circles can still "look well". :(

  • It sounds like you have tried all ways to get the information you need. I would write to the hospitals Chief Exec and explain your situation. His/her name will be on the website. You need to know one way or the other if you are still an out patient there. But while waiting to do this and get a reply read as much as you can to gain knowledge.

  • Thanks. :) I've managed to locate the hospital's Chief Exec and will write to her. Would the letter be written as a complaint?

  • I think you have cause for complaint. For some reason you have been given the run around!

  • Yes, it does seem like it. I can start writing the letter tomorrow now that I have the address.

  • Good luck Starla.

    If writing a complaint still see your gp. Complaints systems take sometime.

    Try & keep your problem list for gp/consultants as short as pos (I know that can be difficult). Facts/symptoms listed rather than in sentences. Take 2 copies, one for each of you, make discussing easier. Insist Dr puts his/her list on your records & keep yours also so can be referred back to. You can both check off what's been tested etc as time goes on.


  • Hi, yes. I'll still see my GP and see what she says. I know I need to keep my problem list short and sweet but since my problem list is two pages long would it best to perhaps mention 5 symptoms per each appointment? I know there's a time limit on appointments. I think it's something like 7 minutes I have at a single appointment.

  • Yes, that's a good plan re doc. Pick the 5 symptoms that are affecting your life worst to start with. It's a good idea to take someone with you if you can. It's amazing how much better GPs listen when there is a witness present.

  • I don't have anyone around as a witness unfortunately.

  • Have you a family member or friend to come with you?

    Agree, definitely pic out (highlight on list) 5 symptoms worst effected by.

    Keep calm & remember your just seeking medical help, you want to get better. If gp not proactive re explain that you really feel things needs to be checked out.


  • I don't have any friends that live nearby. Because my family members don't understand they have been telling me to "get over it" and I've been going to hospital appointments alone because of this.

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