TSH 4.80 (0.2 - 4.2)
FT4 14.7 (12 - 22)
FT3 3.5 (3.1 - 6.8)
THYROID PEROXIDASE ANTIBODY 278 (<34)
THYROGLOBULIN ANTIBODY 563 (<115)
Diagnosed hypothyroid in 2011, not sure what symptoms are classed as normal for hypothyroid or not but they are mostly hard stool, depression, joint pain, dry skin, feeling sick, dizziness, tinnitus, sweating, weight loss. Thankyou
Hello Lucy & welcome
- for members to help you please state what dose (of levothyroxine?) you are taking - it isn't enough as your TSH is high & FT4 & FT3 low in range. You should take it first or last thing with water only away from food/cuppas/supplements.
Thyroid hormone functions better with optimal levels of vital minerals iron/ferritin folate/B12 and vitamin D, ask for these to be tested too for starters. Members report going gluten free helps reduce antibodies, your symptoms indicate you are hypothyroid, weight loss is less common 'tho, and may indicate gut problems.
Best go back to the GP & ask for an increase & vitamin testing. J 
Thankyou I was taken off Levothyroxine to reset my thyroid
Can you give us more info? You were diagnosed and levo prescribed with regular blood tests to get the dose right? What were the reasons given for removing the prescription? How long are you going to be without medication? Was this management by GP or an endo?
Thankyou I was diagnosed with a TSH of 67 (0.2 - 4.2) FT4 10.2 (12 - 22) and had dose reviews every 6-8 weeks since 2013 but only twice in 2011.
The reason for stopping the Levo was due to *TSH 0.02 (0.2 - 4.2) FT4 21.3 (12 - 22) and I am going without medication until tomorrow when I have new bloods done.
The stopping of Levo was done by GP and not my endo
Good grief! Once diagnosed and receiving medication you should not stop taking levo. Your GP has little idea. We can’t prompt a failing thyroid to start producing hormones again like this.The last test results look to me as if TSH was suppressed because you are taking hormones. TSH is part of a feedback loop, as in when sufficient hormone is detected in this case from your medication, there is no need to raise TSH to stimulate the thyroid. And FT4 is high but in range. It would have been useful to have FT3 test for that time as that might have been more helpful.
It looks as if you need a new doctor. Please see a doctor as a matter of urgency. Spareribs and Admin is it necessary to slowly build up again after a total break from levo? How long have you been without levo? You need a thyroid literate doctor I’m afraid not one that risks your health by withdrawing your prescription.
You should see another doctor or call the endo as a matter of urgency to get your prescription reinstated. But don’t go back to that GP. Please consider talking to TUK about your experience as they are interested in such poor care and put together a complaint.
I am very angry on your behalf.
Thankyou I am looking to change endos as well because he says my symptoms are not related to thyroid disease and said my thyroid results looked good but there is no FT3 result?
Hmm! Good thyroid literate endos can be hard to find. And GPs obviously. Your results looked good as you were medicated! It might be worth ringing med secretary though to get meds reinstated. They can’t diagnose you with a condition that requires meds for life and then withdraw them on a whim.
Complain to Practice manager and state that you need an urgent prescription, consider GMC complaint about the doctor, to endo re GP care, to Health Watch highlighting poor knowledge and dangerous practice, to PALS as endo should be supervising GP prescription and they might be helpful in reinstating, to senior partners at GP practice, and to your MP. You would be amazed how quickly your situation can change once you are putting the facts in writing.
So get your thoughts together and speak up for yourself. I am a fellow patient but have had to complain about shockingly bad care. Feels daunting at first but you need to make them see you and understand the implications for your health of such bizarre decisions. Perhaps go early for your blood test and insist that you see practice manager etc before you have bloods. They find it more difficult to ignore you in person.
Your ft3 result is listed above. 3.5.
reset? ? Your doctor has no idea what is going on,
I was told in December 2017 my levels of ferritin etc are normal/fine but I have always had problems with anaemia
Well there you go. Probably not fine if anemic.
I am really worried about what my blood test tomorrow will show. I feel even worse than before - headaches, feeling slow, zombie-like, taking a while to get motivated. 
I am not surprised. This management will make you ill. See response above and get ready to complain to everyone.
Ok thankyou I will make a complaint to the practice
Nothing to worry about. Only something to look forward to! Your bloods will further prove your needs for meds.
I don't know when I will feel mentally strong enough to speak up for myself and I feel like I don't deserve help because of what had happened
? I don’t understand. You were diagnosed with a disease. You’re sick. Why would you possibly not “deserve” to receive adequate healthcare?? Doesn’t every person on earth “deserve” adequate health care? I don’t understand. 🧐
Because I feel so low
Lucy, if you are feeling low, don't you think you need to receive proper medical care? Otherwise, how do expect to get better?
Yes and I am seeing gp tomorrow to get this sorted
That's wonderful news! If this doctor does not put you on thyroid medication for your Hashimoto's, please go find a new doctor immediately. You need to be on thyroid medication to get your thyroid hormones to the correct levels. TSH is always suppressed like yours was, when people are on thyroid medication. TSH is not a thyroid hormone. T3 and T4 are and are measured by FT3 and FT4 tests.
With your current levels, you will need to be started on the starting dose of T4/levo, which is 50 mcg. Six weeks later, it is critical that you go back and get all your levels tested again. It is likely that your medication will need to be increased at that point due to your levels still being too low and due to you still having many symptoms. Lab tests are done every 6 weeks and meds are adjusted until your levels are corrected and until you have little to no symptoms.
Getting to the proper level of medication resulting in good FT3 and FT4 levels, should only take 3-4 months. Along the way, you should start to feel better even as early as a few weeks, but with the right medication, you will continue to feel better as weeks go by.
If 5-6 months have passed and you still don't feel really great, you are still not on the right medication for you. It should never be that 6 months or years go by and people still feel awful and have lots of symptoms. Unfortunately, this does happen if people are not on top of their bloods and their medications.
Good luck at the doctor tomorrow. Make sure he give you meds. Then you'll be on your way to feeling well again soon!
Please dig deep and speak up. As said by ShootingStars you deserve to be well, to be treated with professional competence. When you are disregarded and ignored, treated incompetently and dangerously you must speak up. Do you have someone that can go with you? I find a silent seriously looking OH works well. Also you are entitled to record any sessions you have, you simply let whomever know that you are recording as a matter of courtesy. That often serves to make them more mindful of what they say and do.
We are here to help. 🙂
Brilliant move! Maybe all people with incompetent doctors should start recording them, so then the doctors will be more inclined to treat them better!
Also: always get copies of all your test results and other diagnostic resports. This is your personal information. It is your patient right to get your copies. Besides, you need to know your results and understand them yourself.
Thankyou. I have no one who will come with me
Hi Lucy, Why do you need someone need to go with you?? May I ask your age? Are you a minor? If that's the case, then your parents should be going with you.
I am 33 but I am not very assertive
Oh. Well, you are an advocate for yourself and your health, just like everyone else. Someone else is not responsible for your health or being assertive about your health, you are. 
If you're interested in getting better and feeling better, all you can do is take care of yourself by being assertive, being your own advocate, and getting the medical care that you need as soon as you start to feel unwell. That's how it goes for everyone. Otherwise, you still be left suffering and sick.
I am very interested in getting myself better.
Great! That's half the battle! Only you can lead yourself there.
This is what I do for each and every doctors appointment. Grab a piece of paper and pen. Start to organize your goals for your appointment by creating a rough draft.
1) What do you need to accomplish? What are you goals? list them
2) What are your questions? list them
3) What tests do you want? list them
4) What meds do you want? list them
5) What other diagnostics do you need? You have Hashimoto's. There's a good chance that your thyroid is enlarged. Do you have any neck swelling, lump in your throat, feeling of something pressing on your windpipe? If your thyroid is enlarged, even just a little, you need a thyroid ultrasound to look at your thyroid. It is common to have nodules. They need to be measured and determined which type they are. Thyroid also need to be measured. The reason you need an ultrasound is to rule out thyroid cancer. It's not super common, but the only way to know if you don't have it if your thyroid is enlarged is to have an ultrasound. Sometimes additional diagnostics are needed. Both are routine and have happened to most of use with thyroid disease.
7) After you create the rough draft, re-write it so it's nice and organized. Make sure you take this list with you to your appointment and make sure you use your list. Make sure you take notes about every key thing the doctor says.
Thankyou GP won't scan thyroid any more, thyroid is enlarged on previous scans
Thyroid must be monitored regularly. They can and do change. When was your last scan?
Nodules can appear. What do your previous radiology reports say?
Your GP sounds like needs a career change, retire, or be let go from his position.
Ultrasound scan done 2015
Report said thyroid gland enlarged and is coarsened. Also hypoechoic
I see that you were diagnosed hypothyroid 7 years ago, in 2011. You have Hashimoto's autoimmune thyroid disease, based on your elevated thyroid antibodies. You must be on thyroid medication. That is how this is treated.
you need to take someone with you - not someone like my hubby he's useless with authority!
take your best or loudest friend, prep them beforehand and just ask them to take notes unless the doctor is intimidating first.
Hi Lucy,
Just put one foot in front of the other, so to speak, and keep at it... sounds like you have a poor medical support team there, who don't appear to be up to scratch. Get an appointment with PALS asap, and try and collate any records, dates, etc., you have to take with you- PALS may not understand the medical side of things, but they are helpful about who to contact next within the bewildering array of systems within the NHS. ( my sister sought, and received, great support through her local PALS team, and got things sorted out ).
You are not alone, but it won't happen if you don't make a start..... thoroughly endorse the comments above- wishing you strength of purpose,
Michelle
You can talk to PALS by phone and if you have brain fog or issues they are able to transcribe the complaint for you by phone. Often simply letting everyone know that you are complaining is enough for them to sort out the issues. But do keep good records as now you may not want to pursue a formal complaint process it but in a months time you may think differently.
Thankyou I went through PALS before about this and I didn't get very far
Thankyou no I continued to feel unwell
So do I reintroduce 150mcg Levo?
No. You can't just start at 150 mcg. You have to slowly move up. The starting dose is always 50 mcg. Make sure it's not 25 mcg. This is too low and is not the starting dose. You need the correct starting dose. As Hidden says above, then after the first 6 week blood tests, you will increase in 25 mcg increments. It's possible you won't need the exact same amount, 150 mcg, again. Maybe more, maybe less. When you get up to having optimal levels, sometimes the increase is only 12.5 mcg.
12.5 mcg was my last dose increases. 25 mcg would have been way too much for me and I'd have been over medicated. It all depends upon you, your body, your blood levels, and your symptoms.
Right! Then you fire the one who just tried to do it, because they obviously don't understand thyroid disease, your lab work, or your symptoms, and they are not worthy of being your doctor.
People MUST be their own advocates in their health, well being, knowledge and understanding of all things related to their health.
It's very simple and it beggars belief that your doctors don't understand it.
You have autoimmune thyroiditis aka Hashimoto's as confirmed by your raised antibodies. This is where antibodies attack the thyroid and gradually destroy it. The antibodies cause fluctuations in test results and symptoms. When antibodies attack there is a hormone dump which can cause hyper-type symptoms. This is temporary and eventually things go back to normal. It can help to adjust dose of thyroid meds at this time and readjust when things settle down.
However, these results don't even suggest that this has happened:
*TSH 0.02 (0.2 - 4.2)
FT4 21.3 (12 - 22)
and were no reason to stop your Levo. You're not even over medicated with those results. Your GP has seen your suppressed TSH and panicked. Your FT4 is in range and if it had been tested I have no doubt your FT3 would be in range (FT3 being the most important test as it measures the active hormone that every cell in our body needs) but they rarely test it.
TSH is not a thyroid hormone, it is a signal from the pituitary to tell the thyroid to produce hormone. As you are taking Levo the pituitary detects this so doesn't need to send the signal so TSH is low.
You need to address the Hashi's by adopting a strict gluten free diet and supplementing with selenium l-selenomethionine 200mcg to help reduce the antibodies. Keep TSH suppressed also helps reduce the antibodies.
chriskresser.com/the-gluten...
hypothyroidmom.com/hashimot...
stopthethyroidmadness.com/h...
stopthethyroidmadness.com/h...
Hashi's can cause gut and absorption problems and very often low nutrient levels are the result. You need to check
Vit D
B12
Folate
Ferritin
And address any deficiencies or low levels, along with any gut problems.
Post any results you have and suggestions can be made where problems exist.
Thankyou I have been told vitamin and mineral levels normal/fine
As you've probably read on numerous posts here, normal/fine is often not optimal.
Where you "normal/fine" and at the bottom of the range?
Or where you "normal/fine" and at the tome of the range?
What were your levels and ranges?
Do I post on here or new thread? I am conscious about the results being missed on this one
Sure! It's all related to what you are going through.
Thankyou other surgeries have tested FT3 and it is always bottom of range
Yes, yours is much too low.
Well, that sucks. If one turns out to be an idiot, can't you request a new one (new idiot?)?
If you are going to have to go by yourself spend some time tonight going over what you want to say to the doctor and use the comments on here to work out what you want to ask and what you think is the problem plus what you want done to fix it. Jot down your symptoms, how they have changed since he decided to stop your thyroxine to ‘reset’ your thyroid! or print it out. I’d be tempted to ask him when he will know when your thyroid has been successfully ‘reset’?
If you can print it out, print a copy for your doctor to look at while you are reading it out to him.
I’d ask him how he feels his actions so far are going to help your ailing thyroid.
Just jot it down as bullet points rather than an essay otherwise you will lose your doctor and stick to the main things you want sorted.
Is there no one at all who you could ask to go along with you? A neighbour? Someone from work or you know from the school gate? Doesn’t need to be a best friend. You just want another body in the room with you as a witness.
I know it’s mean but, when I hear “your results are fine “ I feel like saying what for me, or you or your receptionist or the receptionist’s dog?!?!? You want them optimal for you - when they are optimal for you then you ought to feel well.
Good luck tomorrow, when you go in to speak to your doctor just think of us all behind you cheering you on.
No one at all can come with me. I see a female doctor tomorrow and tonight I will be preparing for my appointment tomorrow thankyou
You don't need someone to go with you, you just have to show up at the appointment, right? What's someone else going to do? Speak to your doctor for you? They certainly shouldn't.
That's true
Exactly. See above. /\
This applies to all doctors appointments, regardless if someone tagged along to the appointment. It's only the patient's responsibility to make use of their doctors appointment, not someone else's.
I can’t agree with that.
I’ve never taken anyone with me to a doctor’s appointment or even gone along with anyone - but over the years I’ve been using this site I have seen how some doctors and endos can intimidate some of their patients and I know many patients like to have someone there to support them - not to speak for them - the only person who can do that is the patient themselves.
I just imagine it isn’t quite so easy for a doctor to browbeat a patient if there is someone else in the room observing the proceedings or even taking notes - again that could help if there is a lot to remember.
I think if Lucy goes well prepared and the female GP she sees is half decent then she ought to be ok but she’s not had the best of experience so far has she.
I told the same GP everything over the phone and she told me she really needs me to come in so she can help me
Yes, that is standard. They cannot diagnose you over the phone, given your history, symptoms and blood work. So far she sounds like she's right on track for giving you good medical care.
I think we've all been there where we've encountered poorly communicating, closed minded and not so caring doctors. It's how we deal with these people that matters. Regardless if a doctor has less than endearing qualities, a patient has to use their appointment to their best advantage. That's unfortunate that some patients allow themselves to be intimidated by doctors. Patient's have to learn to be their own advocates and stand up for themselves and their health. It's their right as a person and as a patient.
Mayo Clinic has a nice page discussing benefits of being assertive, and phrases to use to be more assertive. Assertiveness is a core communication skill. It reduces stress, improves coping skills, earns the respect from others, increases self confidence and self esteem, sets and obtains goals, leaves you with a feeling of accomplishment, etc. mayoclinic.org/healthy-life...
Most of the doctors/specialists I see are male and I feel intimidated by them. I want tomorrow to go right. And my current endo dictates with me in the room which makes me uncomfortable
I always got my pad out with pen and went through my issues one by one, then wrote down the answer at my own pace with further questioning of them for clarification. This slowed the apt down to my pace, not theirs, but as a WC user they could be inclined to take the brakes off and try to move me.
When I go for apts in a buggy that I drive myself and with an observer, recording the session, they are quite different. So use your notes and simply stay seated until you get the answers you need. When they reinstate your drugs you do need an apology and reassurance that they will not mistreat you or anyone else again. That is aside from any other action you decide to take.
It is very dissapointing that PALS didn’t deal with your complaint well. As you can see by the number of responses and our outrage on your behalf we are all behind you. We will be thinking of you and waiting to hear the outcome.
Thankyou, no I have not had good experience with PALS. They started off understanding with my first complaint and then I was disappointed with the outcomes of it.
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