New to this forum - sadly not new to Hypothyroidism

New to this forum - sadly not new to Hypothyroidism

Been hypothyroid for 15 years - was on Levothyroxine Sodium 250mcg for a good 10 years but then began to develop adverse symptoms so reduced dose radically down to 100mcg and during this period the "fun" started. I am fighting like billy-o to get NDT which I was prescribed for a while in 2013/2014 - this made a world of difference to me and I now believe I am suffering some pretty nasty adverse effects from T4 synthetic drugs. Information out there is confusing - I see now that what works for one may not work for another but I am listening to my body and know what I need - I just need to find someone who will help me. I cannot face the next 30 - 40 years of my life feeling like this .....

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  • JadisFox Do you have your thyroid results to share, with reference ranges?

    This sounds quite similar to what happened to me, I was up to 200mcg Levo at one time and still having hypo symptoms but very over range FT4 (TSH always suppressed). Doctor was clueless but happy to keep increasing Levo until my FT4 reached 34 (range 11.8-24.6). That's when the fun started for me!

    Now, years later and doing my own research and testing, it's obvious the whole picture isn't being looked at by doctors.

    Ever increasing dose of Levo inevitably caused reverse T3, I had low FT3 to go with that extremely high FT4. Conversion was poor. Vitamins and minerals were all deficient with the exception of B12, sex hormones were on the floor and adrenals had started to struggle.

    So first of all you need further testing - TSH/FT4/FT3 (antibodies too unless you already know if you have Hashi's). Vitamins D, B12 plus Folate and Ferritin. Vitamins and minerals have to be at optimal levels (not just in range) for thyroid hormone to work.

  • Hi Susie - thank you for your prompt reply. I am currently still reeling from a recent consultation with an endocrinologist who basically said that all my symptoms were psychosomatic and that the benefit I had derived (totally transformed my life for the better in EVERY way) whilst on NDT were merely "anecdotal". I went off piste a bit by way of reaction to this very negative meeting and stopped taking my T4 (I do not EVER recommend anyone does this) and tried something I managed to buy on line here in the UK ..... I have been through hell and am going back to see my GP in 8 days time (first available appointment) to ask for full bloods - all the thyroid tests and also thyroid antibody tests - I shall let you know how I get on! I cannot remember ever feeling so ill in all my 56 years ......

  • Grrrrrrrrrrrrrrrrrrrrrrrrrrr....if I hear one more person being told their symptoms are psychosomatic I'll do my nut!!! Has the Endocrinologist actually read the report on the quality review of levothyroxine by the MHRA in the UK??

    If not, they should read it and if they've read it they should NOT be telling you your symptoms were/are psychosomatic as very probablly you were affected by the lack of quality of levothyroxine and now they're making out there's something wrong with your judgement!!! They're the ones that are NUTS. Makes me so, so mad!!!

    In the 2013 report below, you will see that some levothyroxine was ineffective and none of it was assuredly bioequivalent and some of it simply was not adequately bioavailable. Levothyroxine was incorrectly classified as a stable drug showing very poor chemical knowledge on the part of the Commission for Human Medicines who are responsible for the quality of medicines in the UK. In addition, the dissolution tests were not adequate and the quality controls in the factories were insufficient for an unstable drug. It's no wonder you felt better on NDT.

    Problems were being reported from 2008 onwards and it was not resolved fully until 2015 by which time all manufacturers had to comply with the new legislation and there was adequate supply of levothyroxine to meet demand. However, it remains to be seen whether the changes have adequately improved the quality of levothyroxine.

    See 2013 report on UK levvothyroxine below.

    webarchive.nationalarchives...

    I hope it makes you feel better to know that your symptoms were/are not psychosomatic and that levothyroxine has caused problems for people which has resulted in improper management of their conditions and reluctance to take UK manufactured levothyroxine.

    Probably now, you are lacking in vitamins and other essential nutrients due to your hypothyroidism being improperly managed but if you follow SeasideSusie and others good advice you'll get back to good health again.

  • Thank you! It is nice to know that I am not the only angry hypothyroid under-treated person out there! I take responsibility for my health and wellness - I WILL get myself sorted out ....... life is for living not living like a bleedin' zombie!!

  • You will get back to being the person you are, I thought I would never be me again but I am.

  • I should think you were raging with Endo's response. they just haven't one clue how we feel when inadequately medicated. They treat us as if we were children and do not know what is best for us.

  • Quite - but fear not .... I was politeness personified when I firmly told him he was WRONG in everything he said .... think I must have made quite an impression - not his usual grateful grovelling patient who was prepared to bow down and kiss his feet - so much so that he actually rang me from his personal mobile phone two weeks later to ask how I was .... now THAT was an interesting phone call as I had left his office telling him that not only was he wasting my valuable time but I was obviously wasting his - I stood up, shook his hand and walked quietly out of his office ....... never to be seen again ......

  • Welcome Jadisfox, I'm sorry you are not feeling well but you've come to the right place. Everyone helps each other here with their experience and knowledge.

    Usually when people first arrive, it's suggested that they post their latest blood test results. People with experience can give much better help if they can view the factual information. Remember to include the laboratory ranges as lab ranges vary.

    You might need to ask for your results from the doc if you don't already have them.

  • Thanks Nanaedake - this is in hand now!

  • Welcome to our forum and your picture is beautiful. If you can copy and paste your post above onto your Profile so that members can refer to it instead of asking you repeat questions.

    Many of our members have sourced their own NDT. They will send you a private message as no information is permitted on the open forum but it is recommended that you post your up-to-date results with the ranges.

    A red dot will appear next to your name on the heading, click on this and you will see 'message' press and it will take you into it. It is private between you and the respondent.

  • Thank you so much for this information (Tree pic was taken when I lived in Cambridge last year!) I need to source my own NDT so will will do as you suggest. Thank you for your help.

  • Welcome to the forum, I am relatively new to here as well but it is helping me navigate this thyroid minefield!

    I had total thyroidectomy in January and am on levo all I can say is I have never felt so ill on a medicine in my life.

    Fatigue, bowel issues muscle pain, vertigo etc. I am seeing new endo in October to try and get other treatment if she doesn't agree I will source it myself. I encourage you to keep going you can get your health back on the right hormone. This site is invaluable stay strong.

  • My personal opinion and I do have my thyroid gland, is that people who have had a thyroidectomy should be given T4/T3 combination. Even researchers agree that most feel better.

    I feel sorry for you as I have my gland but levothyroxine made me feel 100 times worse than having a TSH of 100 when finally diagosed.

  • Thank you for encouraging words my life has come to a standstill since surgery. Will not give up until I get other treatment, appreciate all your advise in here. Unless you experienced this illness one could not understand the devastation it causes physical, mental and emotional. I feel like my soul was removed when they took my gland I am a totally different person!

  • It is really pitiful that patients are left to get on with it- on their own with seemingly unknowledgeable doctors - some who whip out the gland and then you are passed on to others who know nothing about symptoms and who believe that if the patient's results are 'anywhere' in the range they are on sufficient hormones.

    God help us. The suffering which occurs is worldwide.

    Thank goodness for the internet as it has opened up the ineptness of some of the medical profession.

    Just recently (I don't know if you are in the UK) they withdrew suddenty T3 and patients were left high and dry with no resource to get it. I think they should just make all thyroid hormones to be sourced 'over the counter' and it would save everyone a lot of anxiety.

    If you are in the UK you could sign the Pinned Post on the right-hand side i.e. Thyroiduk.org.uk launches T3 campaign.

  • I have already signed it! Yes I agree - they should make them all available over the counter but then big pharma would lose their icy grip ........... Thank you for your words - at least I am far from alone in this living hell .....

  • Hi shaws I am living in Ireland, had a wonderful surgeon who preformed the thyroidectomy, he told me it can be a very difficult thing to get the balance after surgery.

    He also acknowledged the lack of good endocrinologist in Ireland.

    But I was unprepared for the ignorance on gp side, as well as an endo I saw in april. He told me I was in menopause and he would see me again after Christmas!!!

    I have researched and have found endo in Dublin who treats with ndt. I see her in October hope I am not disappointed.

  • Thank you Johnjoe 123 - I have banged my head against so many brick walls I think I have smashed my brains out by now .... I think the only option to have a life worth living again is to try to source on-line - I am so angry with the Consultant I saw most recently - I feel let down by the NHS and this illness is utterly horrid - no-one can see how ill you are and many medics simply don't believe your symptoms - it is hell ..... I want my life back - I want to save my marriage - I want to feel well and be able to work again and be a functioning member of society again (I was a high functioning one once upon a time!) I wish you well with your recovery and all the luck in the world and a sympathetic Consultant ..... God knows some of us need that!

  • The 'authorities' went after 'good doctors' and one in particular invited every Endocrinologist to a Conference (he was a Virologist who was getting the left-overs who weren't being diagnosed) to discuss the Parlous Situation for thyroid patients when all the empasis was upon the TSH only. One by one they all refused. In the meantime the Virologist was told to appear before the GMC for treating people he deemed hypo according to symptoms as well as TSH.

    The strain on this doctor to appear about 7 ? times I believe before the GMC and always found that he treated patients properly.

    Unfortunately for us patients he died of a stroke. At his last appearance before the GMC there were 10,000 testimonials from his grateful patients whose lives 'he saved' their words.

    He was the last of the old school who were trained in the 50's/60's upon clinical symptoms only. Before blood tests and levothyroxine were brought in and everyone was given NDT (since 1892) up until it was withdrawn after False Statements were made about it.

    Dr John Lowe was also an Adviser to Thyroiduk.org.uk before his death and he sent the following to the BTA and RCoP and despite three yearly reminders they never had the courtesy to respond!!!

    thyroidscience.com/Criticis...

  • If I wasn't so polite there are lots of words I would like to type right now at this point ...... all other words fail me ..... genuinely - I am shocked and horrified. I KNOW that the NHS is at breaking point, I KNOW how hard it is in the current financial climate but I am not asking for a fancy new drug - far from it - take me back 50 odd years to when NDT was the only option - long before Big Pharma and huge profits got involved - now there's the rub .......

  • One of his admirers did a calculation about how many times he was called before the GMC and the odds were 4 million to 1. !!! I am sure that's right but obviously his website was removed so I cannot confirm.

  • Shocking .......

  • Dr Peatfield is another 'old school' doctor who also had similar experience but he resigned his licence so that he could still advise people but couldn't prescribe. I think he must be near his 80's now. So I think there has to be others.

    Also it makes others fearful to go against the guidelines.

  • I will keep you posted, best of luck.

  • Welcome to the forum, JadisFox. That is a gorgeous tree! "[...] what works for one may not work for another" is so true and listening to your body is so important. With regard to finding someone to help, the admins and members here are a great resource. Do you mean you are seeking a physician or other type of practitioner? If you could be more specific as to what kind of help you're seeking, I'm sure you would get some helpful replies. Wishing you the best!

  • oops, I hadn't seen any replies when I posted the above. See, helpful replies already. ;)

  • :-) - yes thank you wellness 1 - I am just trying to pin my original post to my profile ..... bear with!

  • I am working on it!

  • Just wondering what year you started to have problems with Levothyroxine. If in the UK, there were major problems with Levothyroxine bioequivalence and manufacturing from 2008 until 2015.

  • Blood tests for thyroid hormones have to be at the earliest possible, fasting (you can drink water) and allow a gap of 24 hours between last dose and test and take it afterwards, This keeps the tSH at its highest as doctors are apt to only take notice of TSH and T4.

    p.s. we have two recommended labs who do home pin-prick tests and you can use either if GP or lab wont test

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

  • Thanks - I had read this information in an earlier post and will act upon it.

  • Make sure tests include thyroid antibodies

  • Oh trust me I will - and also for liver function tests as these have all gone out of whack at the moment too ....

  • Latest email sounds good! Worth asking for adrenals to be tested ?

    Those of us with Hashimoto's often blame our thyroid for the many signs and symptoms we experience.

    Hair loss? Thyroid!

    Weight gain? THYROID!

    Fatigue? It's gotta be the thyroid!

    Treating hypothyroidism without treating the adrenals is one of the biggest reasons people continue to feel exhausted despite receiving treatment with thyroid hormones.

    Patients may initially report feeling more energetic after starting thyroid hormones, but this is usually followed by feeling worse and worse until they are right back to where they were before they started the thyroid medications. They will go back to their physicians to check blood work and will be told that everything is normal.

    The patient begins to feel crazy … but that’s when another layer of what is broken in Hashimoto’s becomes unraveled. Many symptoms of hypothyroidism actually overlap with symptoms of underactive adrenals, however, physicians don’t routinely check adrenal function in those with Hashimoto’s.

    Symptoms of poor adrenal function may include the following: feeling overwhelmed, feeling tired despite adequate sleep, difficulty getting up in the morning on most days, craving for salty foods (a.k.a. “I just ate a whole bag of chips syndrome”), increased effort required for everyday activities, low blood pressure, feeling faint when getting up quickly, mental fog, alternating diarrhea/constipation, low blood sugar, decreased sex drive, decreased ability to handle stress, slowed healing, mild depression, less enjoyment in life, feeling worse after skipping meals, increased PMS, poor concentration, reduced ability to make decisions, reduced productivity, poor memory … do any of these sound familiar?

    Stress is not your friend!

    Stress causes our adrenals to pump out extra hormones, and shifts our body from a relaxing, digesting, healing state to a fight or flight state. The body's energy is shifted from doing "useless" things like growing beautiful hair, metabolizing, making hormones, digesting and repairing itself, and instead, all of the body's resources are reserved to make cortisol and adrenaline that is pumped through our veins so that we can keep going.

    This mechanism comes in really handy when you are chased by a bear, not so much when the mechanism gets triggered by traffic or loud television shows.

    Eventually, we run out of nutrients that are required for proper adrenal function and we get to a state of adrenal fatigue. This is when our body is no longer able to heal itself and we feel drained.

    There are four types of stress that turn on our fight or flight response; mental/emotional stress, sleep disorders, metabolic/ glycemic dysregulation, and chronic inflammation.

    Recovering from adrenal fatigue

    Replenishing nutrients and using adaptogens, that balance out the adrenals can be helpful for everyone. I like to use the Daily Stress Formula from Pure Encapsulations. It contains nutrients and adaptogens.

    Stabilizing the blood sugar through diet is also important.

    Adrenal saliva testing can also be done to determine which stage of adrenal fatigue the person is in, and supplements can be used accordingly. I have a whole chapter dedicated to the adrenals in my book, and it is the longest chapter in the whole book, as matter of fact. I discuss testing, interpreting tests, what to do in each stage as far as supplements go and explain the who physiology behind the adrenals.

    But the most important strategy for combating adrenal fatigue does not involve dieting, supplements, medications or testing. This strategy however, is often the hardest to implement. That strategy is...stress reduction. It was probably the hardest lifestyle change for me to implement. I only had two settings "GO" and "SLEEP". I did not know how to relax, smell the roses, turn-off or unwind.

    I came up with this list of strategies to make myself more relaxed and shift my body into a state of relaxing, digesting and healing. I hope some of them will resonate with you, but many of you will need to come up with your own list. Many of these items may be really difficult to implement, especially for those of us with responsibilities like jobs, children, or elderly relatives who need our care, but somehow, you HAVE to schedule time for yourself. We often expect our doctors to heal us, but the healing comes from within just the same.

    No one else will do it for you. Put it in your planner if you must.

    Some strategies to reduce stress include…

    Read self-help books on relaxation, overcoming stress, etc. “How To Stop Worrying And Start Living” by Dale Carnegie is a great classic.

    Find one thing to be thankful for each day.

    Listen to books on CD while doing things you don’t enjoy. For example I despise traffic and cleaning the house. Listening to a book on CD keeps my busy mind engaged instead of worrying about the traffic or the house.

    Music: Try the Spa station on Pandora for instant relaxation!

    Meditation, yoga, and tai chi are all relaxing hobbies.

    Cut out toxic people ...

    Get organized and simplify your life.

    Consume less: turn off the TV, get off the Internet, stay out of stores.

    Take time for yourself … daily, weekly, monthly, yearly.

    Daily: Try a yoga class, hot bath, or closing your eyes for 15 minutes to meditate.

    Weekly: Schedule a day off from work—a day when you just do what you want to do. You are forbidden from running errands, doing chores, or work. Do you feel like reading all day? Do it! Do you want to stay in bed all day? Do it! Do you want to get a mani-pedi? Go for it. It’s your time, your body, your health. One strategy for those of us who are lucky enough to have time off from work is to “schedule” your sick days. Schedule work responsibilities around the planned sick day.

    Monthly: Schedule a message/spa day with the girls.

    Yearly: Schedule a beach vacation, schedule a staycation

    Control freaks … learn to let it go. You can’t rest the weight of the world on your shoulders. Retire from your position as CEO of the Universe. You will be much better off and surprisingly, the world will go on.

    Mindfulness: Pausing, and being present and observant of how things are affecting you can be a great way to learn how to relax yourself.

    Avoid getting overtired and/or overexcited

    Laugh several times a day

    Enjoy life, get a pet

    Do your best to eliminate, simplify, delegate, automate.

    Be more resilient by being more flexible. Bruce Lee once said “Notice that the stiffest tree is most easily cracked, while the bamboo or willow survives by bending with the wind.”

    Do the things that you like.

    Orderliness and predictability are your friends. Plan your life that way when you can. Catch up on bills, checkbooks, and your long to-do lists. Keep your space neat and clean. Schedule times to clean the house and catch up on life, not just big events. Make sure you schedule down time as well.

    Avoid burning the candle at both ends.

    Massage, acupuncture, meditation or tai chi may help get you relaxed.

    Avoid multitasking. Do one thing at a time and keep your full attention on it before you move on to the next task. Take a small break in between tasks.

    Start a journal, make your own list, be mindful of what makes you feel better, what makes you feel worse.

    I wish you the best of luck in your healing journey!

    Warmly,

    Dr. Izabella Wentz, PharmD

  • Thank you Izabella - I have been on a health and wellness journey for several years now and I am already aware of a lot of your expertise - I perform Reiki on myself daily and meditate, I have detoxed my home and my personal care products - make my own magnesium oil and liposomal encapsulated Vitamin C (to avoid harmful fillers) - I even got rid of all my plastic cooking utensils using only wood or stainless steel and got rid of all my non-stick pans - it has been quite a journey; I have rid myself of toxic people and relationships and got to grips with the whole stress thing but of course - in the background - during all of this (I even stopped colouring my hair) every day I was taking a synthetic drug and my body has been reacting to it .... it has taken me years to work this out with little or no help from Endos or GP's but through it all I have listened to my body (our bodies are constantly seeking balance and communicating to us but most of us have learned to ignore this) and I now feel empowered enough to regain my health. When my poor body stops hurting so badly I fully intend to start Yoga and will achieve my goals ..... it will be a journey of that I am sure and I will have many more of "those looks" from doctors but it is my body, my life and I take full responsibility for it and possession of it.

  • Welcome to this great forum where everyone comes together with their own experiences and knowledge acquired through their thyroid journey . There are some but few who are on levothyroxine and do great . They are great converters T4 to T3 . However for those of us and most of us that had TT and can not rely on what once our own thyroids made it would be great if Dr's would give us T4 with some T3 added to the mix . Without having to fight for it . Not having the appropriate thyroid hormones further debilitates us with adrenal insufficiencies . Thyroids and adrenals work in unison . When thyroids meds are not optimal adrenals pick up the slack . After a while adrenals take the beating leaving us with a lot more issues then we bargained for . Nutrients play a tremendous factor too . Vit"D" Selenium (for conversions) B-12/folate , Iron (test for ferritin levels) Vit"C" supports adrenals as does B-5 . Having adrenals tested through saliva and DHEA-S is very useful . Most Dr don't know much if anything about adrenals . Journaling and familiarizing our symptoms and connecting to hypo/hyper symptoms is very helpful to achieve our optimal dosage . Wishing you your optimal well being real soon .

  • Thanks - yes I did ask for Adrenal testing a while back and was told that it was "not reliable due to the levels fluctuating throughout the day"!!!!! Can you believe that - how can a GP say that with a straight face???? Looks like a lot of people out there have to become their own specialists and I have now joined their rank ...... I have been on a health and wellness quest for five years now - I detoxed my life in so many ways - but all the time I was being poisoned by big pharma .....

  • JadisFox Dr DON"T KNOW ANYTHING about adrenals . I guess Medical Academia just never saw the importance of adrenals just like T3 . What will it take for them to have an awakening that adrenals are an important part of every human being even animals . We can not leave without adrenals . Adrenals are tested through saliva a few times a day because it fluctuates during the day . It just proves the ignorance of this DR .Are we going to need to seek out Dr's that themselves have adrenal insufficiencies just like Dr who dose with T3 or NDT to get scripts for ourT3/NDT ????

  • You've said it all. Absolutely no good comes of relying on gp for invisible disease. Show them a broken arm and they will refer you, no problem...

    Good luck. We all been there, we keep on with fight the good fight... no other way...

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