Sick of going around in circles

Hi, im hoping someone will message me with info on where I can buy t3 on line? I'm at the end of my tether and so fed up of not being able to find any info. Ive begged my endo to test my t3 levels and even trial me on the meds but his reply was ' your levels are normal'! ( how many of us have been told that?) I'm over weight despite halving my calorie intake and exercising, which then leaves me really tired afterwards and Im no use nor ornament, I have brain fog so bad I dont like talking to people as its too much effort, I dither & shiver from the cold and Im loosing my hair along the hairline and scalp. There are other symptoms but I CBA to list them all... its soul destroying. Im so completely sick of Drs not listening to me I want to have a go at self medicating...but I want to do it as safely as possible. If anyone can give me any tips or useful websites Id be very grateful. Thanks

25 Replies

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  • I think before you start the journey its good to know the point you are starting from and the things you need to improve. If you can afford it maybe order a test like this bluehorizonmedicals.co.uk/T...

    Your vitamin levels are just as important to be optimal.

  • Thanks for your reply.Ive had so many blood tests recently, my endo tested me for everything ( except t3) Im deficient in vit D so take 2 aviticol tablets once a month.All other tests, including Bvits were 'normal'. If you know of any sites where I can buy t3 Id be very grateful.

  • Please post these results. Normal doesn't mean anything g, numbers and ranges are what's needed.

  • I got mine online a few days ago. PM me if you want details.

  • Welcome :) I CBA to respond because I'd like to help but the forum needs to know what your bloods are like; post your latest tests and ranges, tell us what meds you're currently taking, complete your profile and tell us a little about your thyroid issue, have you tried NDT for example ? Are you hypo or hashi's or don't you know ?

    You have to help yourself and just accepting that your bloods are normal is never good for a thyroidie; you must have a copy and see your levels for yourself. There is lots more info here thyroiduk.org.uk/tuk/index.... and I would suggest that a careful look through is your next step. You can feel better but you have to take ownership of your condition and control of its maintenance.

  • Ive been underactive for 20 years. 51 now.Origionally it took.2 years to diagnose me as 3 separate blood tests over 18 months stated I was 'normal'.the 4th test showed my tsh level was 93! I was only awake about 6 hours a day. At first meds made me feel better.I was taking 150mg. This has been dropped to 100 &125mg every other day. Recent tests show negative coeliac antibodies, normal serum ferritin at 97ug/l. Normal thyroid function: free T4 16.6 pmol/L and TSH 0.64 mui/L. Thyroid peroxidase antibodies are positive 1300 iu/ml, blood count normal. Renal function normal. Deficient in Vit D and take prescribed supplements. My base line temp every morning ranges from 35.6 to 36.5. I eat an extremely healthy diet, no.processed foods, sugars ( except fruit) or fatty foods. I am concious of my energy levels & exercise when i can. My mum and daugher both have underactive thyroids, aged 70 & 23. We all have exactly the same symptoms, mum suffering them the least & my daugher the most.

    Thanks for your reply, Im very new to this and hope this is what you meant by posting my info.Im not really sure what you mean by taking ownership of my condition though?

  • I'm not really sure what you mean by taking ownership of my condition

    Usual process when we're feeling unwell and have exhausted over the counter medications and changes in diet / hydration etc -

    Call on GP, explain symptoms, GP gives prescription take these for a week/month come and see me if you don't feel better / have a blood test in six weeks, repeat until you feel well again.

    Process when we are hypothyroid

    Call on GP, explain symptoms, blood test, only if out of ranges that are too wide does GP give prescription take these for a week/month come and see me if you don't feel better or have a blood test in six weeks, repeat until you feel well again or GP tells you hurrah ! You are in range! Go home and rejoice ! An Endo might equally well adopt the same approach and both will probably tell you it's all in your head and offer your anti depressants if you remain symptomatic.

    In this instance your GP/Endo is ignorant of your condition. Instead of handing the problem over to him, you have to take ownership and find a solution for yourself. I know, crazy isn't it ? But many of us on the forum you have joined today have learned here that this is a condition where we can't rely on the UK medical profession to always 'make' us well.

    Take your pick of 'Topics' on the right hand side. You have to be *rsed to read through the posts which chime with the way you're feeling. Take ownership of your condition :)

  • I have books and Ive been on lots of sites, read up on hypothyroidism & read discussions on chat forums.I meant I CBA to list all my symptoms because Im tired ( physically & mentally) not that I CBA to read othe sufferers symptoms. Please believe me that I understand that my sympoms are the same as countless other people with this disease & I try everything to stay healthy & knowledgeable ( taking ownership?) and wanting to self medicate is the last option...I dont know what else to do!

  • Please send info on how I can I find a solution

  • Hi Kerrylb

    I think what Rapunzel means by taking ownership of your condition is becoming very well informed on every aspect of your hea!th that influences the way you feel. Form knowing your test results and the ranges ( which you have omitted ) and all the applicable nutrient levels.

    I am similar to you in that I'm at the start of my journey regards improving the way I feel. I have stupidly ( but understandably when under medicated ) spent my life believing doctors when they have said things like normal test results to me. And gone along with diagnosis of depression ect.

    I was diagnosed at 18 and was ok ish on levo for most of my twenties. In my early thirties I had a full hysterectomy and I've really struggled since then. Always blaming other things like my menopause symptoms ect. To make things worse the 'wonderful' doctors decided to lower my dose 5 years ago. I was going through tremendous stress at the time and have had ever since. So as I felt worse there was always something else to blame.

    The thing that started my journey was seeing the 'trust me I'm a doctor' programme about t3. And I thought I must need that as the docs kept saying my levo meds were fine ( as it happens they are not ! ) I started to read about t3 and read medical research papers and the like online before ordering from an online body builders site. DON'T DO THAT ! That was before I found this site and started on a steep learning curve. Not long after finding this site I ordered t3 from a source recommended by other members. But since doing that I have realised I really need to get a full bloods check. I am on the sick so it seemed a real financial stretch. But a very very necessary one. I've just ordered my test kit today and can't wait to get the results.

    I'd recommend reading reading and reading some more. Read as many posts and the answers as you can. Click on the links and read all the material people recommend that could possibly relate to you. I've started making notes and keeping links to read again as I learn more and things that didn't make much sense at first will as you become more informed.

    Use the link Colin put and get your private bloods done as soon as possible. I've just gone for plus 11.

    Good luck and don't hesitate to ask for more help 😊

  • Thanks, Ive read posts, discussions, papers, reports, watched that tv prog...& still feel like im going around in circles! everything Ive seen/ found out basically says the same. Lots of us feel ill on levo, have the same or similar symptoms and dianosises. GPs wont/cant give us t3 or armour & dont or cant take any notice of new evidence/findings. If I do take the bloods/vitamin test u mentioned how would that benefit me? Ive tried taking vits & minerals before & I didnt feel any better. I doubt GPs and endo would take any notice of any results either? Can you tell me the name of the source for t3 ypu used please?

  • It will help because you can post the comprehensive results on here and knowledgeable people like the administrators, SeasideSusie Rapunzel and many more will be able to advise you on the way forward. The private tests will tell you your free t3 and if you need to add t3. There is also a more comprehensive test which includes reverse t3 which can play a part in how you feel.

    As Shaws says there's always NDT. But I believe most people start with t3 & levo and see how it goes. I felt like you, sick of feeling sick and just so desperate to get my hands on some t3 after hearing you can feel so much better on it. The tests have been a big financial stretch but Ive felt its the best road to go down.

    Once you are fully informed of your starting point then you know what gaps in medication and nutrients to plug to become as optimal as possible. Then if still not improvement, then perhaps try NDT. I believe regular testing is best so you can see your progress related to how you feel

    Hope that helps and I do know how you feel 😊 Sick of being sick 😕

  • Kerrylb

    "Ive begged my endo to test my t3 levels and even trial me on the meds but his reply was ' your levels are normal'! "

    So you have to start taking some sort of control here or your endo is going to keep you ill.

    You have to ask:

    "Can you give me my test results please"

    And if the answer is that they're normal then you reply:

    "Even so, I would like my results please"

    You don't have to give a reason but if you want to you could say that they are for your own records, nothing more is needed.

    If the answer is still no then you say something along the lines of:

    "You are probably aware that it is my legal entitlement under the Data Protection Act 1998 to have my test results,and I am sure that you wouldn't want to break the law".

    If absolutely necessary you can make a Subject Access Request.

    So you need the results of your tests along with their reference ranges (these are important as they vary from lab to lab).

    And as ColinK has said, vitamins and minerals are important, they have to be at optimal levels, not just in range, for thyroid hormone to work properly. If you have had them tested, post the results, if not you could ask. Or the quickest and easiest way is to do the test Colin has linked to.

    Once you know your levels, and we can see where FT4 and FT3 lie which will tell us if you are converting well enough, then we can give you some guidance on whether you need an increase in Levo, whether you would benefit from the addition of T3, whether you have any nutritional deficiencies and what supplements to take if you have.

    T3 is proving quite difficult to get at the moment even from our reliable suppliers as there seems to be a shortage, so there are delays in orders arriving. By the time you've got your test results things might be back to near normal and if T3 is going to help you then we can point you in the right direction.

  • Don't forget that there is also what is called 'natural dessicated thyroid hormones and there are a number of them. These are based on the very original thyroid hormone replacement invented in 1892. Before that hypothyroid people had a horrible death.

    NDT contains all of the hormones a healthy gland. Of course, again, false statements have been made about it due to the fact they are more expensive than levothyroxine and many people do not recover on levothyroxine alone.

    Big Pharma will be poorer if people switch and who may also need fewer prescriptions for their remaining symptoms when on NDT.

    NDT was all that was available before the introduction of levothyroxine.

    I think, if the patient is still suffering when on an optimum dose of levo,(not when the TSH is somewhere in the range) that options should be offered in a compassionate manner.

  • Thanks, yes I agree, I asked my endo for this too & got nowhere. My husband attended my last appointment with the endo to support me and back up how crap I feel but to no avail. I'd buy it my self if I knew where to get it from.

  • Put up a new post and ask for a Private Message to be sent to you with information on how to source NDT.

    It used to be freely prescribed and it can still be in the UK if the doctor is willing and it has to be under a 'named patient' basis.

    There is a non-prescriptive NDT and it was invented by one of our Advisers who has since died. I shall give you this link as it is non-prescriptive and is allowed on the open forum.

    naturalthyroidsolutions.com/

  • Kerrylb

    Ferritin at 97ug/l. - this is a good level. Is this without supplementing?

    **

    Deficient in Vit D and take prescribed supplements - what is your actual level?

    You say you are taking 2 x Aviticol once a month. Is this the 20,000iu capsules? If so that is 40,000iu monthly, so the equivalent of approximately 1300iu daily. If you are 'deficient' then I expect your level is 30 or less. Unfortunately, the amount of D3 you are taking is insufficient and it will take a very long time to increase your level.

    Most Health Authority guidelines for the treatment of Vit D deficiency state that Aviticol should be 40,000 WEEKLY for 7 weeks, followed by a maintenance dose.

    This is from Netdoctor:

    "Aviticol - For adults, the recommended dose to treat vitamin D deficiency is two capsules taken once a week for seven weeks. This is followed by a maintenance dose of two or three capsules a month."

    From Mims (the doctor's prescribing bible):

    "Aviticol - For adults, the recommended dose to treat vitamin D deficiency is two capsules taken once a week for seven weeks. This is followed by a maintenance dose of two or three capsules a month."

    From Leeds Primary Care NHS (you can search your own area)

    "WEEKLY REGIMES

    Colecalciferol 2 x 20 000 units capsules each

    week for 7 weeks (licensed products available)"

    So you can see your GP isn't following guidelines for treatment of Vit D deficiency.

    You can do one of two things - take it up with him and ask for the correct treatment, or just buy your own. If you give us your Vit D level we can suggest what you can buy and how much to take.

    Your GP won't have told you, because they are not taught nutrition, bit there are important cofactors needed when taking D3 vitamindcouncil.org/about-v...

    D3 aids absorption of calcium from food and K2-MK7 directs the calcium to bones and teeth where it is needed and away from arteries and soft tissues where it can be deposited and cause problems. D3 and K2 are fat soluble so should be taken with the fattiest meal of the day, D3 four hours away from thyroid meds.

    Magnesium comes in different forms, check here to see which would suit you best and as it's calming it's best taken in the evening, four hours away from thyroid meds naturalnews.com/046401_magn...

    **

    TSH 0.64 mui/L.

    FT4 16.6 pmol/L - what is the reference range? We need to see where in the range you lie.

    FT3 is also needed to see if you are converting well enough.

    **

    Thyroid peroxidase antibodies are positive 1300 iu/ml, - this is a problem. You are positive for autoimmune thyroid disease aka Hashimoto's. This is where antibodies attack the thyroid and gradually destroy it. Hashi's isn't treated, it's the resulting Hypothyroidism that is. You can help reduce the antibodies by adopting a strict gluten free diet. Gluten contains gliadin which is a protein thought to trigger antibody attacks.

    Gluten/Thyroid connection - chriskresser.com/the-gluten...

    Supplementing with selenium L-selenomethionine 200mcg daily and keeping TSH suppressed also help reduce antibodies. Selenium also helps T4 to T3 conversion.

    Hashi's information:

    stopthethyroidmadness.com/h...

    stopthethyroidmadness.com/h...

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

    **

    B12

    Folate

    Have you had these tested?

    **

    Once all vitamins and minerals are at optimal levels then thyroid hormone has a better chance of working.

    **

    It is important to have FT4 and FT3 tested at the same time so that we can see how your conversion is and see if you need to add T3 or try NDT.

  • Wow! Thanks! My vit D test says 54 nmol/L with adjusted calcium of 2.4 mmol/L & yes it is 20,000 ui tabs.

    FThyroid peroxidase antibodies are positive 1300 iu/ml ( actually has a 'less than' symbol next to it but i dont have that on my fone. There are no reference ranges for ft4 & tsh on my notes, sorry. The ferritin level is without supplements.

    Ive tried gluten free before for 3 months, didnt feel any better. I dont tend to eat a lot of carbs ( except porridge) but I will give it another go so thanks for that too. Ive had all B vit & folate levels tested & the GP said all normal.She didnt give me actual levels though so I will ask for these. I'll.also get some selenuim. I do think ive other auto.immune diseases going on, my hair loss for one.

    Ive asked for t3 blood test, with the GP & Endo at St James. Neither will give me it. He also stated may be discharged back to GP at my next appointment.

  • Kerrylb

    OK, so as far as Vit D is concerned, with a level of 54 then that is 'insufficient' not 'deficient'. The recommended level is 100-150nmol/L. The dose that would be best at the moment is approx 5000iu daily. Now, you can continue with your prescribed supplement and add some of your own to make the equivalent of about 5000iu daily. If you want to do that then my suggestion is to buy some of these bodykind.com/product/2463-b...

    This is what I would do:

    Week 1 - 1 x Aviticol (20,000iu),

    Week 2 - 5000iu Drs Best D3 daily (35,000iu)

    Week 3 - 1 x Aviticol (20,000iu)

    Week 4 - 5000iu Drs Best D3 daily (35,000iu)

    Total = 110,000iu ÷ 28 days = 3928iu daily

    You could add in an extra one or two of the Drs Best to increase this if you wish.

    Retest in 3 months' time. You can do this privately with a fingerprick blood spot test for£28 from City Assays vitamindtest.org.uk/index.html

    When you've reached the recommended level (100-150) then a maintenance dose of 2000iu daily or maybe 5000iu alternate days should be enough, maybe less in the summer. Retest once or twice a year to stay within the recommended level.

    For K2-MK7 this is a decent one and is important for directing the calcium to bones and teeth as mentioned - amazon.co.uk/Jarrow-Formula...

    **

    Gluten free may take a while but it's not about you feeling 'better', it's about reducing the antibodies so it's worth giving it a good go. We know 1300 is vastly over range for TPO antibodies, so don't worry about the range for that, you've been told they're positive and that is good enough.

    **

    Find out the levels of B12 and folate. Doctors love the phrase 'normal' but it doesn't mean anything other than it's in range. Take the range for B12, we frequently see something like 140-770. So 141 is normal, so is 769. However, it's guaranteed that if you had a level of 141 you would feel vastly different from how you'd feel with a level of 769. At 141 you could very well have Pernicious Anaemia. This is why it's so important to ask for results and ranges.

    **

    Ferritin of 97 is fantastic for someone not supplementing, many of us here will be envious!

    **

    FT4 of 16.6 - well that's difficult to say where it falls within the range. Some ranges are 12-22 so you'd be quite low in that range. I think my NHS area's range changed to 7-17 a while back so you'd be quite high if your range was that. So you can see why it's important.

    As you have your vits and mins more or less sorted (but do check your B12 and folate results), and you know you have positive antibodies, then you could do do just a basic thyroid check for TSH, FT4 and FT3 with Blue Horizon or Medichecks and that would cost less than the full test including vits and mins.

    bluehorizonmedicals.co.uk/P... - £49

    medichecks.com/thyroid-func... - £39

    I would do this test and then let's see where to go from there.

    **

    By the way, hair loss can be caused by Hypothyroidism, low levels of ferritin (not​ in your case though), low zinc, low Vit C, low Vit A, stress, so there are many causes.

  • Thank you for all your knowledge and help! I really appreciate. Ive already started gluten free ( but tbh I dont have alot any way) and am ordering the vit D and selenium today. I will contact my GP/ Endo and ask for the ranges/ levels asap. Once again, thanks 👍

  • Hi, Ive contact my endo departmemt and the ranges for fT4 are 10.0 - 20.0( Im 16.6, THS range is 0.02 - 4.0, Im 0.64...so yes I can understand why my endo says my bloods are normal.But thats on paper, he just wont listen to how I feel. Going for MRI scan now because my tinnitis is getting worse.Im sure if they gave me the proper medication this would improve! Thanks for your help.

  • Honestly everyone wants to , and will help you, but for thyroid meds to work whether it be t4, t3 or NDT everything else needs to be optimum, not just okay, fine, in range but optimum which with b12 can be over range.

    Just getting t3 and self medicating without first sorting all other issues first could leave you worse even than now.

    If you do not have or cannot get your test results, with ranges, for

    B12

    FOLATE

    FERRITIN

    vitamin d

    then you need to get them, before starting on t3

    TSH

    T4

    T3

    Antibodies

    results also needed. When you have these including ranges do a new post and then the wonderful knowledgeable people on here who have been where you are now can help you, one step at a time :)

    ColinK gave you a link to one company you can get these tested privately for less than £100 and this really is well worth it. Its an investment in your future.

    There are other sites, like medichecks and its worth comparing both as they do special offers now and then. I will give you the link on private testing via THYROID UK and you really should read and learn from this wonderful website.

    thyroiduk.org.uk/tuk/testin...

    Getting to be as well as you can is a long slow process, a marathon not a sprint and trying to skip the basics will just mean you take longer to get there.

    Imho you have just taken the first step by posting on here.

    Good luck

    ((hugs))

    Linda xxxx

  • Kerrylb, you sound exactly like me. I'm at the beginning of the journey of getting myself well, after realising the most UK gp's literally show no interest of how we are feeling. I too am sick of being told my tests are normal. I'm going to order a full set of Thyroid tests privately and put the cost on my credit card. I'm also going to add adrenals to the tests I order. You say you've read lots on this subject, have you read Isabella Wendy's recent book -Hashimoto's Protocol? She is a pharmacist , who was diagnosed with Hashimoto's, and like us was struggling with symptoms despite being on t4. I'm going to buy it and conquer this disease, if it kills me.

  • You have had SUPERB advice and I can only confirm that having GOOD levels of nutrients is vital. Think of them as the building blocks of a healthy body - a strong foundation on which to build for the future.

    I have been on this forum a long time and have read so often about people wanting T3. Without following the advice given they are soon back saying T3 doesn't work ......

    You can click onto the names in a post and read of their journey - only takes a minute - but it does help to understand that the good people here have had quite a time finding wellness and know their stuff 😊

    I wasn't diagnosed with Hashimotos until I was 59 back in 2005 - after a lifetime of complicated illnesses - some of which caused serious vitamin deficiencies. I too had lots to read and learn but am now feeling good having taken the advice of others who know more than me 😊 Reading my Profile will tell you more .

    Hope you will soon feel stronger.

  • It's by prescription only so, you have to convince your doctor to let you try it. I am on both T3 and T4 but take an additional 1/2 tab of T3 but, I have low T3 syndrome. These meds are for thyroid disease and not meant as a diet pill. It will harm your heart if it is not needed. Hope this helps.

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