Hi my name is Janet I live in the UK and this is my first post, I was diagnosed hypothyroid 12 years ago and feel I have been getting progressively worse, to the point three years ago, when I completely broke down, I can no longer do the office job I had as I simply can't remember the things I need to do, don't pass on messages etc, I get side tracked very easily, I took a year out of work, but need to do something to earn money so I started decorating, but I am struggling so much! My joints are getting really bad, some days I can't even hold a cup of tea without shooting pains down my wrist. My energy levels go up and down all the time. I'm currently taking 150 mg levothyroid, 150mg Sertraline and a vitamin D. I got referred to an Endo a year ago and feel I am getting nowhere fast. He tried me on a T3 & t4 combo I did see a little improvement but he said it wasn't enough to make it worthwhile continuing so back on t4 only.
I can't go on with this, I feel like I will never be the same person I was again, I don't recognise any part of me anymore I have gained 5 stone in weight, I hate myself so much and I need some rapid results cos I just can't do this anymore.
Can anyone offer any advice on what tests I should be asking for and what medications I should be pushing for, thanks in advance
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Did the endo set you up to fail? When you were on the combi dose, how much levothyroxine and how much liothyronine did he put you on?
Do you have copies of recent blood tests? Those will be your starting point. I'd lay money on you being underdosed, but also probably ferritin and B12 deficient too.
Thank you for your reply, it was 8 weeks ago that I came off the combo I think I was taking 100mg Levo nice a day & 20mg of Lio twice a day, I'm not 100% sure about Levo could have been 50 mg I really can't remember - I am sur about Lio as I still have some left.
My results were as follows:-
TSH<0.01
Free Thyroxine 14.8
Free T3 7.4
CRP 87.8
I used to take B12 but dr said I didn't need it and I have not heard of ferritin, what is that?
Yes it is correct, I was suffering very badly with all joints at the time (it was as if every fibre of my being was throbbing), my GP retested it I don't have the actual result but I was told that it had come down but more investigation would need to be done, GP contacted the Endo who said he would linvestigate further however my appointment seems a long way off. I still have pain but not at the same level.
Yes Janet I can imagine you were suffering very badly with a result like that. Appointments are few and far between with Endo's, while meanwhile we suffer. Thankfully you are not suffering at the same level and hopefully when you eventually see the Endo it will help further. But there are some knowledgeable people on here so keep on asking questions they may be able to help.
As SlowDragon said, get a copy of your results (perhaps the last year's worth) and post them here for comment. You are entitled, under more than one act of Parliament, to have a copy. Pop down to your surgery and ask for them. That'll let us see what's going on (and we can teach you how to interpret them too ).
If it was 50mcg levo and 40mcg of lio per day that might explain it - that would've only just been an improvement on your previous dose. (Do you take your thyroid hormones on the day of your tests? Don't from now on - it makes the readings artificially high.
Ferritin is the storage form of iron. We often find it's low in hypothyroid folk, along with B12 and Vit D. As already said, you may still find going gluten free helpful (though you may not - try it and see. You can always reintroduce it).
I have checked my records and found quite a comprehensive peace set of lab results which may be of use. They were done by the Endo and letter is dated 10/12/15 it states that current medications were
It was suggested that high T3 likely reflects post dose but has said that as TSH is suppressed my T3 dose should be reduced to 10mcg twice daily (I am not sure this happened)
Thanks again everyone for your help! I will need to pop to the surgery to get results from GP I now realise that I need to keep notes of medications dates and results, I have so much trouble remembering everything x
Oh dear, another undereducated endo. There seem to be loads of them. TSH tends to be suppressed on any amount of T3, be it 10mcg or 40mcg. You can't base dosage on TSH - it just doesn't work. It would have been interesting to know what FT3 would have been had you not taken T3 before the test. Never mind...
Your folate could do with supplementing and your B12 isn't optimal - could do with being much nearer 1000. Your ferritin is also rather low. Ferritin is needed for converting Levothyroxine to the active thyroid hormone T3, so it might be that if that went up to 70+ you'd find you could make much better use of the levothyroxine. It could be either the low ferritin or the low folate making you brain foggy (but equally undertreated hypothyroidism tends to do that!)). And as Marz says further down, there's a good chance your B12 is lower than it looks.
Not wanting to scare you but unless the GP has done a postgraduate course/training in nutrition s/he will say you don't need the B12 if you are within the lab range even if you are at the lower border of it.
In addition B12 is a water soluble vitamin even though some of it is stored in the liver. This means if you stop supplementing your serum level can drop dramatically. Your active level may still be fine as you will be using the stored B12 but you need to add to it. An active B12 test is more expensive than a serum one so it is not done as routine.
In regards to Ferritin - Ferritin is a protein that stores iron in the body. It then makes iron available to other organs as needed. However in the case of a high CRP (C reactive protein) it is likely your ferritin level is raised. (Even then it can still be sub-optimal.) This is because the body holds on to iron if you have inflammation, chronic infection or certain diseases. Your high CRP indicates you have likely have inflammation or an autoimmune disease.
Therefore in your case you should have a full blood count and iron panel as well as a ferritin test. This will help show whether you are iron deficient. However if you have had a full blood count in the last 6 months don't bother getting another one done and save your money.
The reason to get a copy of all your blood tests is often GPs do full blood counts instead of another specific blood test simply to save money. This is because unless they have extra training they aren't sure why they need to check ferritin or other levels, so don't do it. In some people's cases red cell, white cell or platelet information shows they gave iron or another deficiency.
In the case of the endo some know about nutrition others do not. It depends solely on that individual and their interests. Likewise some specialise in thyroid disorders but others do not.
So unfortunately you are going to have to learn about your disease yourself instead of relying on the NHS so you get and stay well. This sounds hard in the beginning but take it slowly, READ through the links people have given, ASK questions however stupid you think they are, and you will get there.
Thank you for your help, I have now posted my latest results, maybe you could take a look for me? Also I need to ask, how do I supplement to raise Ferritin?
I've just seen your haemoglobin result you have iron deficiency anaemia.
You need to make a GPs appointment and show them your blood test results and state you have iron deficiency anaemia.
As most GPs are stupid and only go on lab ranges they won't question the fact that the NHS lab range starts at 11.5 but your lab range starts at 12, which is what the WHO (World Health Organisation) guidelines state, so the GP will prescribe you iron tablets.
The GP should prescribe you one ferrous fumerate tablet to take 3 times per day. Take the tablet with water and vitamin C only. Also take the tablet 4 hours away from thryoid meds and 2 hours away from other food, drink and supplements. This is because iron interacts with a lot of things and can cause diarrhoea, constipation or you can end up suffering from both.
If you have bowel issues while taking the iron tablets and they are painful, then it's fine to skip doses however aim to take a minimum of one tablet per day. If even that is intolerable then start a new thread and you will be given alternative iron supplements you can take - however you will have to pay for them. DO NOT just go and buy random iron supplements as a lot are ineffective for people with iron deficiency anaemia.
After completing this course of iron tablets which should take you 6-8 weeks the GP will want to retest your haemoglobin ONLY and as long as it is above 11.5 you will not be considered anaemic. You actually want a haemoglobin level of 13 or above.
Some GPs are stupid and will not give you another prescription after the first one however you need another prescription to be properly treated. This time as your aim is to raise your ferritin level so you need to take one ferrous fumerate tablet twice a day with vitamin C and water. Again take it 4 hours away from thyroid meds and 2 hours away from other food, drink and supplements.
After you have finished this you need to have your ferritin level tested. You MAY have to do this test privately as even GPs who know about ferritin levels think a level of 30 is adequate. Your aim is to get your level mid-range e.g. around 100. Unfortunately ferritin rises slowly so if your level is still too low continue supplementation. If that is the case you have to buy the tablets off prescription. This is easy to do but start a new thread if you need to do this so you can get specific advise.
The link I have included you should read, then print out and give to your GP.
Have you got recent test results for thyroid tests - T4, TSH and FT3
Has you GP checked vitamin d, b12, folate and ferratin. These all need to at good (not just average) levels for thyroid hormones (our own or replacement ones) to work in our cells.
Or have you got recent results for these?
Also have you had thyroid antibodies checked? There are two sorts TPO Ab and TG Ab. (Thyroid peroxidase and thyroglobulin) Both need checking, if either, or both are high this means autoimmune thyroid - called Hashimoto's, the most common cause in UK of being hypo. NHS rarely checks TPO and almost never checks TG. NHS believes it is impossible to have negative TPO and raised TG. It's rare, but not impossible, there are a few members on here that have this.
Make sure you get the actual figures from tests (including ranges - figures in brackets). You are entitled to copies of your own results. Some surgeries make nominal charge for printing out.
When you get results suggest you make a new post on here and members can offer advice on any vitamin supplements needed
If you can not get GP to do these tests, then like many of us, you can get them done privately
Blue Horizon - Thyroid plus eleven tests all these.
Vitamin and minerals levels are very important, but standard NHS thinking, doesn't at the moment seem to recognise this. You will see, time and time again on here lots of information and advice about importance of good levels of B12, folate, ferritin and vitamin D, leaky gut and gluten connection to autoimmune Hashimoto's too.
Thank you four your reply, My results were as follows:-
TSH<0.01
Free Thyroxine 14.8
Free T3 7.4
CRP 87.8
As mentioned above my GP said I didn't need B12, I have been Folate deficient in the past but nothing has been mentioned in last 12 months and I've not heard of Ferritin I do have vit D on prescription but I don't have any results for this. I went to a nutritionalist trying to get my weight down and I was tested at that time for gluten intolerance but was advised gluten was not causing me any problems.
I do appreciate all the help I can get on this, i need to get better - I don't recognise myself anymore either physically or mentally.
It might be worth trying gluten free anyway... made a huge difference to me. I felt worse for a week after giving it up and then it was like a lightbulb switching on... i felt awake for the first time in years! I actually feel best totally grain free but gluten/wheat was the first to go and was well worth it.
Thank you for your reply, I had no idea that the tests were so unreliable! I will give it a try, do you have any good recipes / meal plans you could share with me? It sounds so hard as my diet relies heavily on bread!
Personally, I do better with no grains at all so I eat meat and veg mostly! Two of my children are on a gluten free diet and I make bread for them using an (easy) recipe... dovesfarm.co.uk/recipes/glu... (this is for bread rolls but I put it in a loaf tin and only do one rise - it's very easy once you've done it a couple of times). Also I buy 'Genius' bread from Sainsburys or Tesco - quite expensive but it makes great toast. We also get gluten free pasta. If you try it, be prepared you may feel worse for a week or so (it's like withdrawal symptoms!)... but stick with it and you will hopefully get through and feel the benefit.
This huge list of results, sadly does not include anything we need to know - folate, ferritin, B12 and vitamin D. Plus TPO Ab and TG Ab, Ft3, Ft4, TSH, TT4 and CRP
If you can afford it, recommend you get the Blue horizon thyroid plus eleven test. Finger prick test you do at home, they email you results couple days later.
Remember, do the test early in the morning (before 9am) no food or drink before-hand. Most importantly DON'T take your thyroid medication in the 24hours before hand. (12hours for T3 or NDT)
Post results on here, and you will get lots of advice
When you get a load of blood tests and don't understand them look them up on labtestsonline.org.uk/ Regardless keep them in a file or whereever as the NHS does have a habit of losing notes.
Plasma C reactive protein is the same as CRP or C reactive protein.
Just looking at your two tests there are a couple of things I don't like apart from the iron levels.
1. HbA1 is a measure of glucose in your blood. Personally with all the reading I've done in the past few months I think your level is too high - you want a level as near 4 as possible. Unfortunately quite a few hypothyroid patients end up with diabetes for a variety of reasons. I think you should go gluten free as @lindajrst says as this will change your gut bacteria but cut down on the amount of refined carbs e.g. gluten free bread, gluten pasta you eat as refined carbs raise glucose levels. In short your main meals should have half the plate full of veg. This actually includes pulse e.g. lentils, chickpeas and butter beans which small amounts help feel you up. Also stop eating low fat products. If you want to start looking a diets without refined carbs have a look at the forums on diabetes.co.uk There is loads of other stuff on this online but don't be afraid to come back, start a new thread and ask for ideas.
2. Folate - your folate level while in range is too low. You need to supplement that. As it is in range you need to self-supplement as tyour GP and the NHS won't help you. Take a methlyfolate supplement either Jarrows or Solgar which you can get on Amazon. When you retest the level should be mid-range or higher.
3. Vitamin B12 - this level is too low. You need to supplement but again your GP and NHS won't help you as you are in range. Take a methlycolbalamin lozenges either Jarrows or Solgar which you can find on Amazon. Retesting is a waste of time once you are supplementing vitamin B12 but when you do restest your level should be at or above the top of the range.
In term of retesting - folate and vitamin B12 are water soluble so taking them without having another test will not harm you unless you have kidney problems therefore when you retest your ferritin level get a test that includes them e.g. Blue Horizon Plus 10.
Do you have high antibodies??? I am sorry I know how you feel literally...how are your vitamin levels???? If you have low d or low b12 or are low iron .. these can make you sick...
Thank you for your reply, which antibodies should I have tested? I don't think my vitamin levels have been checked recently. My next Endo appointment is a month away and I want to be prepared with as much ammunition as possible. I am considering self medicating on NDT can anyone tell me if it would likely help me and if so, could someone email details of best place to buy and how much it cost and how much supply to get in etc.
TPO is the one test I am familiar with it tells you if you have hashimotos...there is another one too maybe someone will chime in with it..I know you are on UK? I am in US. I didn't ask for these tests they just gave them to me.. I know you have to ask right? I am praying your antibodies are normal...maybe you just need some vit d or b12...when all of this began I was totally blown away by it. Please let know how it goes..
When you post results we need the ranges. Go to GP and get a copy of your results with ranges ( they will print them all out) for when you were on combo and now that you are off. Also ask what dose you were on for combo and how long this is important. Then post again laying out this information with ranges and asking for help. There is no quick fix, but there are other options, but things often take time to improve.
Ps I'm assuming the results u have given us were when you were on combo as tsh suppressed, they must test you again before you see endo, we need up to date results too. Arrange a blood test if you haven't already.
Overwhelming isn't it when suddenly lots of people are listening and want to help 😊 you have had great advice and I imho would get all the tests slowdragon mentioned from blue horizon via thyroid Uk. You can do it at home via a finger prick if you prefer ( I'm a Woos when it comes to needles so the microtainer is great for me as I do it myself at home) then post the results on here. It paints a picture and then the knowledgeable folks who have been there and invented the t shirt can help you take control of your health😊 IF it does come to you needing to self medicate then you ask where people get NDT or T3 and you will get pm telling you where to buy.
So smile, you've started the journey to better health
If you were supplementing B12 when the GP re-tested - it would have been a very skewed/artificial result. Docs do not have a clue. So because the result was good - due to you supplementing - he told you to stop. WRONG. The result is from the blood only and does NOT tell you what can reach the cells where it is needed. In fact only 20% is available to travel to the cells.
Hence you need a B12 result around 1000 and certainly over 500 to prevent neurological symptoms creeping in.
I would keep up a maintenance dose at all times and ALSO take a B complex as B12 works with B9 in the body. Also the other B's are VERY important for brain/nerve function.
To find out the things you need to know there are thyroid tests you can do privately which can be ordered off the internet without the interference of a doctor, nor do you need a doctor's permission.
The first test package linked above can be done as a microtainer test or a vacutainer test.
The second test package linked above can only be done as a vacutainer test.
Microtainer : Finger-prick test. Spring-loaded lancets are sent to you to allow you to prick your fingers. Little vials are sent for the blood to be dripped into.
Vacutainer : Blood sample required from the crook of the elbow. A nurse or phlebotomist will have to take blood for you. All the equipment required is sent to you.
Once you have your blood samples they must be packaged up and taken to the post office where you must post the package asking for "Guaranteed Next Day Delivery By 1pm". Since you want the blood to be processed as soon as possible for greatest accuracy, only do blood draws on Monday - Thursday and post the samples as soon as possible. The lab isn't open at the weekend.
Timing : Take blood samples early in the morning, by 9am at the absolute latest.
Fasting : Don't eat or drink (except plenty of water) overnight or on the day of the test until after the blood has been taken.
Taking thyroid meds : Before blood is taken, levo should be left off for 24 hours, any meds containing T3 should be left off for 12 hours.
Supplements : Avoid these for 24 hours. For iron supplements, some sites e.g. STTM suggest leaving these off for 5 days before testing.
Whatever you do with regard to timing, fasting, stopping meds and supplements, take note, and be consistent from then on - always do tests the same way.
Phlebotomy for vacutainer tests :
People make their own arrangements for this. They may know a friend or relative who will take blood for them.
Some GPs will allow patients to make appointments with the surgery phlebotomist, either for free or for a price, some won't allow it under any circumstances.
Some NHS hospital phlebotomy services will take blood for private testing, usually for a fee. The size of the fee varies dramatically. Phone up in advance and ask whether they will do it for you and how much it costs. Remember to take your tubes away with you. If you have a few hospitals near where you live, shop around for the best response.
There are private phlebotomists, who might come to your house. They are expensive.
Some private hospitals may take blood for you, for a fee. But some insist that it can only be done if you are seeing one of their doctors, which is what you want to avoid.
Getting your results : These are returned to you via email.
I would get a print out from the GP of all blood tests you have had done (at least ideally last 2-3 years worth)
If you can afford it, order a Blue horizon thyroid plus eleven test -£99
This will check both thyroid antibodies. (Tell you if you have Hashimoto's
Vitamin D likely to be low (makes bones/muscles ache)
Folate, B12 & ferritin likely to be low too. Especially B12. (Read "Could it be B12?" By Sally Pacholok)
It might be worth also ordering at same time the active B12 test -£39
@Marz, or someone else with good B12 experience might you advise on that
The Blue Horizon, is an easy to do fingerprick test you do at home, post back and they email results to you couple of days later.
Usual advice on any thyroid test, (home one or on NHS) is to do early in morning, ideally before 9am. No food or drink beforehand (other than water) DON'T take Levo in 24 hours before (take straight after). This way your tests are always consistent, and it will show highest TSH, and as this is mainly all the medics decide dose on, best idea is to keep result as high as possible.
Yes If you have Hashimoto's then you may find adopting 100% gluten free diet can help - even if had negative test for coeliac - it is very unreliable test (I speak from experience, and definitely got the T-shirt. Read my profile for more. My gastroenterologist told me it gives wrong answer about 50% of the time!) )
Strictly gluten free may really help reduce symptoms, and lower antibodies too. Also supplementing selenium can help too.
Gluten hidden in lots of things, need to really check every thing to start with. No malt vinegar (made from barley) no normal beer or larger - barley used. No soy sauce, contains wheat. Nothing using wheat, rye or barley.
"The immune system recovery plan" by Susan Blum - she recommends ALL thyroid patients at least try gluten free, but definitely absolutely all with Hashimoto's or Graves
We have to look to treat the CAUSE, most often leaky gut, causing nutrient deficiencies.
Good websites -
Chris Kresser
Thyroid pharmacist
Amy Myers
You do need a thorough review of your meds and treatment and a test for fibromyalgia.
The people on here are brilliant and will guide you through what you need to do to get better. I don't feel I have any advice on levels and testing to add at the moment - you've got tons of information to process as it is. There are one or two things i'd like to offer, though.
First of all, this is no quick fix. You will indeed begin to feel better quickly but regaining your health will take a little time, so you are going to have to hunker down and be kind to yourself. And the first thing is, when you feel tired, rest. Easier to say than do, I know, but wherever you can, whenever you are tired, rest.
Secondly, when I got so much fabulous advice and guidance, because hypo people are cognitively compromised and being no different, I couldn't process it all. Don't be afraid to ask and ask again. You will find patience and kindness here.
Thirdly, I found it helpful to think things through in parcels. What we are dealing with is so critical to our health that we want to get it right, but the major problem that ignorant and useless doctors impose is that this is a complicated disorder, with many little tributaries running into a great big river of a problem and it's left to us to manage it. So I found working in parcels useful. The parcels of advice I would have found useful if I were you are as follows:
1. Thyroid numbers; these are a rough guide only, but they can be a guide. For example, your T3 looks a bit high and your T4 low. The T3 is likely to look high because you may have taken it too soon before a blood test. Either way, you may not be utilising it. You may feel better on NDT. Ask for a source if you haven't already got a reply and people will private message you. Forget the TSH level - it goes out of the window under different circumstances, and your inflammatory problem is a major TSH b*ggerer-upper and a major T4 and T3 usability b*ggerer-upper too.
2. Iron/ferritin and folate levels; yours are low. Supplement.
3. Vitamin D: you need to take a good 5000IU per day. You need to take it with Vitamin K2, so that the calcium released into your blood stream from supplementing goes back into your bones. Take it with a fatty meal. You can have a break from it periodically, and get it tested regularly.
4. Your B12 is low. You need to supplement; take a high dose, such as Solgar's 5000 mcgs of methylcobalamin, along with a supplement of methylfolate (Mk 7) to enhance your body's use of the B12.
I'm not trying to replicate the advice of others, just parcel it up because when I was so poorly I found that processing the complexity was difficult. The four points above are a synopsis of my 5 year journey on here; everything flows from these.
Lastly, cut out gluten. Seriously. You will have a problem with it as surely as the sun shines behind the clouds.
You will get better. It will take time. All the luck in the world to you.
Thank you for your reply, I am feeling quite overwhelmed by the amount of information, parcels if info are much better for me, I'm trying to organise my notes into sections but I'm not understanding a lot of the results stuff! But I am really appreciating all the help and support being offered x
It was overwhelming for me too. Don't worry about not understanding. It will come. My advice is to take the supplements for iron, vitamin D and B12, cut out wheat and gluten as far as possible and just concentrate on the thyroid stuff. You can trust the supplements to do their work for now until you get to grips with the thyroid info. Everything else can wait, then, until your head begins to clear and your understanding begins to take shape. And try not to worry - it'll just take time.
It has to be lower than 60,had my parents checked last week by a proper doc and not a GP (while i was in Greece for holidays) and the doc was suprised when he saw 70 and ordered more tests.As much i love UK i hate how the health system works,every time i get back here i bring medicines from home
It maybe but here you either follow what the NHS says or do your own research. If the research contains enough research papers from respected journals you can then show your GP.
Also when a liver function test produces a random result the test needs to be redone to confirm it is still a issue and not a one off.
Thank you everyone for your kind words and help, I have seen a GP this morning and he has agreed to all the tests I need, so, I will be seeing the nurse at 9.00 in the morning, fingers crossed, I will be able to start moving in the right direction! I will be only drinking Water before the bloods are taken and not taking meds until after! Will post results in new thread.
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). 
TSH tends to be suppressed on any amount of T3, be it 10mcg or 40mcg. You can't base dosage on TSH - it just doesn't work. It would have been interesting to know what FT3 would have been had you not taken T3 before the test. Never mind...
I can't seem to tolerate any meds anymore
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Tsh 0.2 to 8.1 within 2 weeks. Help please.
