Don't know what to do anymore

I am new and I am 32 years old. No idea what to do anymore, have up and down thyroid results and getting fed up with endo and GP moving my dose up and down. Considering stopping my medication of 150mcg Levo like my endo has said despite ongoing hypo symptoms because I have come to the conclusion that my endo and GP just don't understand how poorly I feel and only understand when my results are under active. Advice welcome.

Thank you in advance.

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  • Zara1213,

    What are your recent thyroid results and ranges?

  • TSH 0.02 (0.2 - 4.2)

    FREE T4 22.7 (12 - 22)

    FREE T3 4.0 (3.1 - 6.8)

    GP wants to reduce from 150mcg Levo to 75mcg

  • Well, your GP is obviously very ignorant. But, then, most of them are. For a start, you should only increase or decrease levo by 25 mcg at a time. A 75 mcg reduction will make you feel very ill. But, he doesn't understand that, I know.

    Secondly, your FT4 may be just slightly over-range - it will probably become under-range if you decrease to 75! - but your FT3 is too low. But, it's a rare doctor that understands T3! What you really need is a little T3 added to your reduced dose of levo (reduced to 125 mcg) because you're a poor converter. But we all know the problems in getting doctors to prescribe T3 at the moment. Would you be willing to buy it yourself?

  • Thanks only if I can get it cheaply enough. I have a low income.

  • I am an NT and would recommend to look into supplements to help the convertion. If your thyroid is not stable it’s probably due to autoimmune attack - how are your antibodies? Did they do the scan and used words such as ‘ lymphocytic infiltration ‘ or ‘ darkening of the thyroid’ , ‘ goitre’ ‘ swelling’ ? And yes, drastically changing hormones is not advisable especially if you are not under constant supervision but you are hyper atm. I would highly recommend to seek a qualified NT advice to help your body to support your thyroid naturally alongside with allopathic treatment. I went through difficult times myself with my thyroid but I got myself back and I truly believe you can feel better as well! It takes time and effort but it is worth it!

  • I have high antibodies

  • TPO antibodies >1000 (<34)

    TG antibodies 378.5 (<115)

    Ultrasound showed lymphocytic infiltration

  • Look into autoimmune protocols as your thyroid is constantly over attack hence it is not stable and just by adjusting your thyroid medications up and down won’t do a trick. Unfortunately,I don’t know your whole medical history so I am not able to give you a personal advice due to my lisence restrictions but I can guide you were to look into: Autoimmune protocol is a start, selenium and zinc is extremely important alongside vitamin D to help convertion as well as reduce autoimmune attack. Later on the line look into GI foods to stabilise blood sugar balance. Always go to sleep before 10pm - read more about cyrcadian rhythms ( there is a lot of research on that but it’s written in medical jargon). Look after your health from all perspectives: Nutrition, sleep, movement and relationships/ self loving. If money is an issue there are some Nutritional therapist who do pro bonus - worth to look into.

  • No, she is not hyper at the moment, her FT3 is not even mid-range. Her FT4 is slightly over-range, but that is because she is not converting well. That does not make her hyper any more than having a suppressed TSH makes her hyper.

    What is an NT, anyway? Not a thyroid specialist, obviously.

  • I am a Nutritional Therapist who is doing research on Hashimoto’s and PCOS link due to its autoimmune prevalence as well as oestrogen involvement in autoimmune conditions. Recent research was extremely interesting: a new discovery of pendrin antibodies in those with autoimmune thyroiditis - a possible link to tinnitus. Also, elivated androgens possibly acting as anti inflammatory mechanism. And of course zonulin in its glory. No, I am not a thyroid specialist.

  • Then please don't give misinformation by telling people they are hyper, when they are obviously not. :)

  • I simply do not. 🙂

  • But you did. You told Zara1213 that she was 'hyper atm'.

  • Let me try to to explain in a very easy english. TSH and T4 has to ‘ dance’ , shutting up TSH completly will cause other issues.If the thyroid is under constant attack it’s being destroyed by immune cells which then cause ‘ leeching’of T4 and T3 which then could be a cause of flatuations. So even though her T4 is not extremely high her TSH is very low. Hence my main goal would be going through autoimmune protocol and stabilising the immune attack as much as I could. I am not endo and I cannot suggest reducingdose by 25mcg but if I were I would for that particular reason.

  • 'leeching of T4 and T3'? I'm sorry, but I don't think you have the first idea what you're talking about.

    And, perhaps you could explain - in simple English, of course, because I'm obviously an idiot! - what 'other issues' you think 'shutting down' the TSH causes? No, don't bother. I can guess.

    Do you actually have a thyroid problem yourself?

  • I have to stop right here unfortunately. I am here to give me educated opinion and not head into the debate.

  • Wow!

  • Hi

    You are not a specialis and greygoose is correct you did say hyper which is totally wrong and misleading. It is impossible to be under active and then over active.

    You can be over Med cated which is not the case here.

    I agree t3 is needed as there is a poor conversion and it would be wise to check vitamin and adrenal levels.

    Please could i ask if you are not authorised to give correct info you don’t give any.

    Kind regards

    Helena

    Ps sorry my screen has gone small.

  • Educated opinion- i think not. Docs, endos, Nds all the same, this site is a godsend and gives good levelheaded advice from people who have been there and understand when the medical profession dont understand or give the wrong diagnosis and its left for this site to pick up the pieces.

  • Unfortunately, most endocrinologists seem as ignorant...

  • True. :(

  • Zara1213,

    It's those large dose changes which cause fluctuations in thyroid levels. Dose should be adjusted in 25mcg increments at 6 week intervals when necessary. I don't think you need a dose reduction, TSH is suppressed and FT4 is only mildly over range. FT3 is quite low in range so you are not overmedicated.

    Read Treatment Options in thyroiduk.org.uk/tuk/about_... Email dionne.fulcher@thyroiduk.org if you would like a copy of the Pulse article to show your GP.

    Ask GP to leave your dose unchanged at 150mcg but if s/he insists on reducing dose you must insist that it is not reduced more than 125mcg/150mcg alternate days to bring FT4 <22.0.

  • Similar & Your results are a bit like mine and endo is recommending I can go to 100mcg from 75mcg. Seeing the GP tomorrow

  • Zara

    Stopping your medication will achieve nothing except make you very ill, so just because your GP and endo don't understand there's no point in cutting off your nose to spite your face, it will be you that suffers not them.

    I think there are more doctors and endos who know next to nothing about thyroid than there are that do know something, and the combined knowledge of experienced patients here will probably explain more than your doctors have ever done. So you need to learn as much as possible so you can help yourself.

    Let's start with your test results. Post what you have, with their reference ranges (very important as they differ from lab to lab). Ideally we need

    TSH

    FT4

    FT3

    Thyroid Peroxidase antibodies

    Thyroglobulin antibodies

    Vit D

    B12

    Folate

    Ferritin

    If you haven't got them all, ask your surgery for a print outnof anything you can get, and any tests not already done ask GP to carry then out or we can recommend labs that you can use to do a home fingerprick blood test.

    It would be very helpful, when posting your thyroid results, to say what dose of levo you were taking at the time, whether the dose was changed and if so what reason was given.

    My immediate thought is that you have positive antibodies confirming autoimmune thyroid disease aka Hashimoto's which causes test results (and symptoms) to fluctuate, and this very common cause of Hypothyroidism is very poorly understood by doctors.

  • TSH 0.02 (0.2 - 4.2)

    FREE T4 22.7 (12 - 22)

    FREE T3 4.0 (3.1 - 6.8)

    GP wants to reduce from 150mcg Levo to 75mcg

  • What about the other things I asked about?

    Those results just tell us that you don't need your dose reduced. Your GP is dosing by TSH which is wrong. It's suppressed because you're taking thyroid hormone so your pituitary isn't sending the signal (TSH) to your thyroid to make any hence your TSH is low. Your FT3 is in range, in fact it is very low in range, so you're not overmedicated. See thyroiduk.org.uk/tuk/about_... > Treatment Options:

    "Dr Toft states in Pulse Magazine, "The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.

    In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l. Most patients will feel well in that circumstance.

    But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

    This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."

    Dr Toft is past president of the British Thyroid Association and leading endocrinologist. You can obtain a copy of the article by emailing dionne.fulcher@thyroiduk.org print it, highlight question 6 to show your GP.

    Those results show that you could actually benefit from the addition of T3 to a slightly reduced dose of Levo.

    All Levo dose changes should be done in increments of 25mcg, not reducing by 75mcg in one go.

  • TPO antibodies >1000 (<34)

    TG antibodies 378.5 (<115)

    Ferritin 4 (15 - 150)

    Folate 1.3 (2.5 - 19.5)

    Vitamin B12 135 (180 - 900)

    Vitamin D 34.4

  • Zara1213,

    Thyroid peroxidase and thyroglobulin antibodies are positive for autoimmune thyroid disease (Hashimoto's). Hashimoto's can cause fluctuations in thyroid levels and TSH.

    There is no cure for Hashimoto's which causes 90% of hypothyroidism. Levothyroxine treatment is for the low thyroid levels it causes. Many people have found that 100% gluten-free diet is helpful in reducing Hashi flares, symptoms and eventually antibodies.

    chriskresser.com/the-gluten...

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

    Your ferritin, vitamin D, B12 and folate are severely deficient. What treatment is your GP prescribing?

  • Nothing prescribed for vitamins and minerals

  • Zara1213,

    I'd change your GP too! Very unlucky to have such ignorant doctors.

    See another GP at the practice or change practice.

    Vitamin D is very low but not deficient. Your GP should refer to local guidelines or the NICE CKS recommendations for treating vitamin D deficient adults cks.nice.org.uk/vitamin-d-d... My sister's GP prescribed 2 x 20,000iu D3 per week for vitD 40. Don't accept a prescription for 800iu which is a maintenance dose to be prescribed when vitD is >75. Vitamin D should be taken 4 hours away from Levothyroxine and T3.

    Ferritin is deficient and this may indicate iron deficiency anaemia. Your GP should do an iron panel and full blood count to check. If you are prescribed iron it should be taken 4 hours away from Levothyroxine and T3.

    B12 and folate are deficient. B12 injections should be initiated 48 hours before you start 5mg folic acid daily and your GP should investigate whether pernicious anaemia is causing the deficiencies. Symptoms listed in b12deficiency.info/signs-an... healthunlocked.com/pasoc are the experts on PA, B12 d and folate deficiency if you want further information.

  • Zara

    TPO antibodies >1000 (<34)

    TG antibodies 378.5 (<115)

    That's at the heart of your problem. Your high antibodies confirm autoimmune thyroid disease aka Hashimoto's which is where antibodies attack the thyroid and gradually destroy it. The antibody attacks cause fluctuations in symptoms and test results. You can help reduce the antibodies by adopting a strict gluten free diet which has helped many members here. Gluten contains gliadin which is a protein thought to trigger antibody attacks. Supplementing with selenium L-selenomethionine 200mcg daily can also help reduce antibodies as can keeping TSH suppressed.

    **

    Ferritin 4 (15 - 150)

    Folate 1.3 (2.5 - 19.5)

    Vitamin B12 135 (180 - 900)

    Vitamin D 34.4

    What has been said about these levels? Are you supplementing?

  • Oh my goodness Zara, your Vit D and ferritin and B12 and folate levels are horribly low - what’s your doctor said about those?

  • Nothing been said about the low vitamins and minerals

  • But but but...

    Honestly, I’m appalled on your behalf. Even if your thyroid tests were perfect, the likelihood is that you would still feel awful. You almost certainly need B12 injections and probably an iron infusion. Your doctor is negligent, there’s no other word for it. :(

    Please, please - see if there’s another doctor in the practice you can see. The one you have will cheerfully let you suffer...

    Big hug.

  • Zara1213

    You are going to have to be assertive here. Make an urgent appointment with your GP and preferably take someone in with you. We tend to be treated better when there is a witness.

    **

    Ferritin 4 (15 - 150)

    Low ferritin can suggest iron deficiency anaemia so ask for an iron panel and full blood count.

    Ferritin needs to be at least 70 for thyroid hormone to work, preferably half way through it's range. Yours is so far below range you need an urgent iron infusion so ask for one.

    You can also help raise ferrritin by eating liver regularly, maximum 200g per week, and include lots of iron rich foods in your diet apjcn.nhri.org.tw/server/in...

    If prescribed any iron tablets then take each one with 1000mg Vit C to aid absorption and help prevent constipation, take iron 4 hours away from thyroid meds and 2 hours away from other medication and supplements as it affects their absorption.

    **

    Folate 1.3 (2.5 - 19.5)

    Vitamin B12 135 (180 - 900)

    You need to go and post these results on the Pernicious Anaemia Society forum for further advice healthunlocked.com/pasoc

    Also mention your ferritin level and iron deficiency anaemia information if you already have that. Also include any signs of B12 Deficiency you may be experiencing from this list b12deficiency.info/signs-an...

    You will need intrinsic factor antibodies testing, you may have Pernicious Anaemia, you may need B12 injections, you will need folic acid for your folate deficiency but that shouldn't be started until other investigations have been carried out and B12 started.

    **

    Vitamin D 34.4

    You are just 4.4 away from needing loading doses but I think all you will be offered is 800iu D3 which will never raise your level. If so, please come back and we can tell you what you need, the dose and Vit D's important cofactors that will be needed.

    **

    Best thing is to see a different GP, get appropriate treatment sorted, then give serious consideration to making a formal complaint for negligence against this GP. Ignoring these results is very serious and beyond negligence.

  • Sorry been on D3 for 5 years at 800iu and complete blood count showed MCV 77.1 (80 - 98) and MCHC 387 (310 - 350) Iron was low and so was transferrin but both in range

  • 800iu Vit D isn’t enough to raise your levels when you’re deficient. That’s why it’s not making any difference. In order to get the numbers to rise you probably need 5000iu a day

    And that low MCV means your red blood cells are tiny - which shows your iron levels are low, even if some of those results are in range.

    And if we know all this, isn’t it strange that your doctor doesn’t? But unfortunately, yours is a very common story around here - increasingly so, in fact. I’d echo everything SeasideSusie has said (I’m so glad she’s seen this post :) ).

  • It is strange. All my GP has written against the low MCV and high MCHC is not clinically significant

  • It’s your GP who isn’t clinically significant...

  • Heehee, I spurted out laughing when I read this :)

  • Zara1213

    For your Vit D, again your GP has been negligent if he started you on 800iu D3 five years ago, you would most likely have been less than 30nmol/L at that time which means you should have been given loading doses.

    So just take charge here and buy your own D3 and take 10,000iu daily for 4 weeks which gives 280,000iu which is the loading dose (280,000 - 300,000iu is the amount given for loading doses. Then reduce to 5000iu daily. Then retest 3 months after starting, you can do this with a home fingerprick blood spot test from City Assays vitamindtest.org.uk/index.html

    When you've reached the level recommended by the Vit D Council, which is 100-150nmol/L, then you'll need to find your maintenance dose which may be 2000iu, may be more or less, it's trial and error so we need to test once or twice a year to keep within the recommended level.

    When taking D3 there are important cofactors needed 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 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 helps D3 to work and comes in different forms, check 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...

    Check out the other cofactors too.

    **

    For the iron deficiency anaemia (confirmed by low MCV/high MCHC) here is the NICE Clinical Knowledge Summary for treatment cks.nice.org.uk/anaemia-iro...

    Print off the relevant part and show your GP then ask for the appropriate treatment

    "Treat adults with iron deficiency anaemia (including pregnant women):

    Treat the underlying cause, if appropriate to do so in primary care.

    Treat iron deficiency anaemia with ferrous sulphate first-line and advise about diet.

    How should I treat iron deficiency anaemia?

    Address underlying causes as necessary (for example treat menorrhagia or stop nonsteroidal anti-inflammatory drugs, if possible).

    Treat with oral ferrous sulphate 200 mg tablets two or three times a day.

    If ferrous sulphate is not tolerated, consider oral ferrous fumarate tablets or ferrous gluconate tablets.

    Do not wait for investigations to be carried out before prescribing iron supplements.

    If dietary deficiency of iron is thought to be a contributory cause of iron deficiency anaemia, advise the person to maintain an adequate balanced intake of iron-rich foods (for example dark green vegetables, iron-fortified bread, meat, apricots, prunes, and raisins) and consider referral to a dietitian.

    Monitor the person to ensure that there is an adequate response to iron treatment."

    If necessary ask for a referral to a haematologist.

  • I was just going to go along with what my GP and endo have been saying. Endo wants me to stop medication and GP wants me to reduce.

  • So causing yourself possible long term damage and making yourself extremely unwell is going to help you how? I understand your distress at your poor treatment but the answer is to empower yourself and take control. Do you have recent blood results that you can post? Do you have hashimoto’s hypothyroid ? Has your gp tested for peroxidase antibodies? In hashimoto’s disease it is not unusual for the thyroid to be unstable and TSH levels to swing between suppressed and underactive. Hypothyroid is also often associated with iron deficiency anaemia and vitamin deficiencies so it is worth getting these tested as well. Please post any results and hopefully the knowledgeable people on here can help you to take control of your own health. Please don’t let the medics grind you down. Goodluck

  • Endo suggested I stop medication and GP wants me to reduce. I was considering going along with what the endo was suggesting

  • Another idiot. Your ft4 is slightly over range but ft3 only just in range. It is worth asking endo why this is. Could you have a conversion problem would liothyronine ( synthetic t3) help? You need to read and learn more. It is hard but worthwhile to regain your health.

  • Thanks previous endo said I have a conversion problem and said I could do with adding T3. Was prescribed this and it helped my thyroid levels. New endo refuses to accept T3 ever helped me and will not reinstate it.

  • Zara1213,

    Ask to be referred to a different endo. Preferably someone who knows something about thyroid.

  • There are so many endo's apparently 'specialising' in diabetes, they should not be let lose on Hypo / Hashi's patients. You have been treated so badly, but I am not surprised, sadly

  • You MUST take charge as you are living with this chaos, they are not,

    Who do you trust most, them or you?

  • TSH 0.02 (0.2 - 4.2)

    FREE T4 22.7 (12 - 22)

    FREE T3 4.0 (3.1 - 6.8)

    GP wants to reduce from 150mcg Levo to 75mcg, endo wants me to stop medication

  • TPO antibodies >1000 (<34)

    TG antibodies 378.5 (<115)

    Ferritin 4 (15 - 150)

    Folate 1.3 (2.5 - 19.5)

    Vitamin B12 135 (180 - 900)

    Vitamin D 34.4

  • So have your docs offered vit b12 injections as it looks like you have pernicious anaemia? What have they said about your ferritin and folate? You won’t be able to convert t4 to t3 with these deficiencies. I would suggest you ask for these to be sorted before changing your dose.

  • Nothing been said about vitamins and minerals

  • Your Endo does not understand the most basic facts about thyroid thsts for sure

  • Zara1213

    Also, I forgot to mention this earlier but your Hashi's is responsible for your low nutrients, along with having your T3 removed.

    Hashi's and gut/absorption problems go hand in hand and low nutrient levels are often the result. Thyroid hormone can't work I less nutrient levels are optimal, and your nutrient levels can't I!price u til the absorption problem has been addressed.

    SlowDragon has links and information to help. Sorry SlowDragon, I'm on my tablet just about to go to bed, and the link to your post I often give is on my PC.

  • I don’t think you should stop talking your meds. You could request a new doctor to see what they would do for you. Sometimes we don’t absorb it. There are certain foods that stop absorption of the meds such as oatmeal and almonds because they have high consentrations of round up or weed killer. You may want to google it. It also stops absorption of vitamin D. How is your D?

  • Ferritin 4 (15 - 150)

    Folate 1.3 (2.5 - 19.5)

    Vitamin B12 135 (180 - 900)

    Vitamin D 34.4

  • Hi Zara!This is what I had btw iam new here too and new for thyroid issues too.I hade hypothyroidism as my gp said I started Levo 50mcg and in two weeks my thyroid went shy high and I had terrible side effects from it after a months my hair was falling in patches my muscles and joint were hurting so much ;( puffy eyes headaches etc I name it.Went back to gp tik him I found private endo and he also lowered my dose on to 25mcg.I stopped medication all together as I suffered from palpitations and ended up in Hospital.Finally I went to endo and he told me from previous blood tests that my ferritin is 24 which is low and I should include iron rich foods and I should keep my vitamin d supplements all the time.Also went I spoke to him he explained that I have thyroiditis (fluctuation of thyroid up and down) and I do have hormonal imbalance.So he sent me for Ultra sound of ovaries and testosterone checks also TSH free4 and LH and Some other I forgot.So you better get checked all your hormones and also check probably all vitamins and minerals.I will start my medication course (not levo or any other ) just metformin to control my insulin and Spironalocton.He said in my case in order to treat thyroid I have to balance my hormons.Good luck x

  • TSH 0.02 (0.2 - 4.2)

    FREE T4 22.7 (12 - 22)

    FREE T3 4.0 (3.1 - 6.8)

    GP wants to reduce from 150mcg Levo to 75mcg, endo wants me to stop medication

  • Zara my darling I think you should listen to endo as endo is a specialist in this matter and she or he knows what is best.in your case I think you have enough slightly over t4 and you don’t need any otherwise you can have lots of side effects and it won’t do you good.Have they checked ferritin/iron all vitamins specially vitamin D?Have you asked your endo to do it?Also antibodies and hormones are important to check!I have had endo who specialises (but I have a private one as it would ow cost me to wait 3months to see nhs which I can’t afford )in diabetes hormonal imbalance and vitamins minerals thyroid issues etc .Maybe you have exactly the same problem as me which is thyroiditis means ur thyroid is flactuating up and down and you don’t need medication at all.I would urge you to check vitamins n minerals plus hormons and if possible Ultra sound of ovaries because it can produce certain hormons way too much or too less which causes imbalance in hormons and thyroid issues.i agree it’s a bit complicated but if you have a great endo who listens to you and does all the checks he will definitely roll out the depth of you problem.i am going throughtt exactly the same thing so endo stopped my medication and now I need to do three weeks blood tests (one week left to do) and I did already my Ultra sound of ovaries (results should be this week) .Now iam on nothing till I get all results and I have flattering heart palpitations at times sleeping less droopy eyelids headaches eyes are in pain blurred vision dizzy etc.Iam just beeing patient in this matter that is all what I can do...I have stopped going to work again because of that.

  • Respectfully Ari, most of the respondents on this thread completely disagree with “listen to endo”. Do please read all of the responses to see why.

  • I mean if endo is a very great and is doing all propa checks etc that is why it is called endocrinologist who is specialist in thyroid issues.I do agree it depends of person how he treats patients and what checks he does but what iam saying is that mostly GPs don’t have this time 10min appointment time to roll out all the causes of thyroid issues.I am putting here only my opinion like everyone else is doing (including you)there is no right or wrong opinion as we are not doctors or specialists.Iam just trying to help person like everyone does!But I do respect your post :) Thank you !

  • Actually there are some right and wrong answers Ari. It’s called science.

  • Also agreed if facts are approved by scientists:)

  • If I had heeded my doctor and Endo I would still be feeling very ill and still crawling along the floor.

    Instead I join this site asked for help and am now self medicating and feeling extremely well.

    If I were you I would take Seasidesusie's brilliant advice and you will soon be feeling well again.

  • But that endo is obviously not a thyroid specialist. Probably knows less than my chiropodist.

  • Lol maybe but I will never understand why do endos specialise in this subject if they are not interested in helping people !? :( that is sad indeed :(

  • Money and power.

  • Yes :(

  • Ari3 I was left extremely ill, with suicidal thoughts, deep depression, agoraphobia and many mental health type symptoms, after seeing 4 Professors of Endocrinology, three Endocrinologists, hundreds of appointments with various GPs. I was first diagnosed Hypothyroid in 1981, and only discovered I have Hashimotos Thyroiditis in January 2017 by paying for a private blood test. I listened to endocrinologists for 34 years. Do you think I would listen to one now? The vast majority of them are liars, out to get as much money in their pockets as possible probably from the pharmaceutical companies, one told me I was a liar and had brought my illness on myself. Please read the desperate posts on this forum on a daily basis. People are absolutely desperate for advice and help to regain health. I had to read, read and read, research, research and research, in order to understand my own severe illness, and I myself along with this forum, after 35 years of being in a hellish place, have regained my health. It was NOT an endocrinologist who got me better

  • Thank you for your reply.I told to my private endo that I have suffered with anxiety and panic attacks for many years roughly 9 and gp put me twice on citalopram 20mg first time and than I went off from them and than I had A huge blown up panic attack 2,5yrs ago and was put on citalopram again .i went off from it this year roughly August and I felt extremely tired no concentration dizzy no energy pimples on my jaw line and acne everywhere on my upper back and shoulders etc headaches.Went to gp and they did thyroid checks on me and full blood count also ferritin etc All came normal as usually nobody told me if iam low in anything.Gp told me I have hypothyroidism and he started me on 50mcg .Some gps told me I need to do TSH retest after three months again to see if I need to go on medication.That gp put me on Levoxitorine l I felt a bit better for a short time like a week and than my muscles started to be so painful all over my body I felt so broken and old headaches every morning pimples and acne doubled up .I went back to gp and he said I will lower the dose.I stoped medication as I had a very big heart palpitations and ended up in hospital.They told me to go back to gp.So I went back and I found a very great endo private one as nhs would take ages.he agreed straight away.When I saw endo he looked at my previous last blood tests and he said that iam low in ferritin and need to increase iron plus keep taking vitamin d supplements as I used to be low in that in my past.I told him all my life story how this all happened anxiety and panic attacks and that my hairs were falling in past and had oily skin pimples .He told me that stress is the main factor which caused me this all(which is true I had terrible childhood and life) Accordingly from my all blood tests he said I have enough t4 and I don’t need it what I have is thyroiditis and hormonal imbalance which can lead to many things .So he said it can be treated .He ordered couple of blood tests first three I have to do weekly now including testosterone as main thing and some others and he sent me to do Ultrasound transvaginal of my ovaries also.He told me that one is the main thing before we start treatment.I have done it last Saturday and this week tomorrow is my third week of my last weekly blood test.Iam not using any medication at all coping with my symptoms.i have stopped going to work as I feel very weak dizzy flattering heart and palpitations at times (mainly flattering heart) headaches eyelids are coming on my eyes now.iam still waiting for my results to come this week about my ultra sound.I don’t know why he ordered that one but he said it is very important.He seamed genuinely great person listening to me all my problems .

  • Ari3 You yourself are still fighting to regain your health, you are not well. You haven't discovered yet what your body needs to recover. I don't wish to be rude but you don't have enough knowledge yet to give advice to newcomers on this forum. You will confuse them and they are already confused !!! I hope you feel better soon.

  • RESPECT!

  • I am not happy with endo since he took my T3 away despite me feeling well on it

  • Hi

    Yes definitely don’t listen to the endo. It’s mostly been covered v well with great information and steps to assist. If a new endo will not supply the t3 then yes like the rest of us you will have to buy it. If you would like options please message me.

    6 years ago the t4 range was 12-28.( labs depending )Have our bodies altered with the decrease? No of course not- it is sensible to see have people feel.

    Again with respect can people not give out misleading information.

  • Thanks was on T3 before and did well on it.

  • I have high antibodies and I have cysts on ovaries

  • Ferritin 4 (15 - 150)

    Folate 1.3 (2.5 - 19.5)

    Vitamin B12 135 (180 - 900)

    Vitamin D 34.4

  • What side effects are you going through at the moment?What do you feel yourself should you stopped it or should you decrease the dose what is your body telling you ?Does Levo make u good at all? How long are you on medication ?

  • No side effects. Was doing well on T3 before it was taken away. Have been on this particular dose for 3 months

  • I have just recently recovered fully from Hashimoto's Thyroiditis, after 35 years of feeling in a hellish place. You most definitely need to get your very low vitamins / minerals / blood quality sorted out and SeasideSusie always gives excellent advice.

    The way I got rid of the inflammation in my body due to the high thyroid antibodies was to cut out eating all grains, cut out as much sugar, and adding good fats like full fat milk, cream, olive oil, real unsalted butter, nuts, avocados, oily fish.

    You have been treated extremely badly (in fact negligently) by your GP and endo.

  • So sorry you are being left without proper care. Ok not many doctors are up to speed with thyroid problems and treatment but to send you for what are basic blood tests which show under range and then not act on it is unforgivable! Any literate person can see something isn't right but blood results are commonly done so a doctor not helping or giving advice his letting more than you down I suspect. He should be giving you a boost by medication and asking himself why this has happened and monitoring again in the future.

  • I would just like to say i have received valuable and knowlegeable advice from all on this forum and given the choicr i too would favour the advice here rather than my useless gp or even more equally useless endo.

    ZARA1213 ditch your gp and endo and find new ones and follow advice from experienced users here. No blah blah here.xx

  • I have recently stopped my Eltroxin as was going from hyper to hypo and fed up going to doctors. Have started taking zinc selenium magnesium and vitamin D resting more sitting in the sun and going for long walks and feel much better so fingers crossed it continues.

  • Zara1213 Most of us on this fab forum who have recovered have had to take our own decisions about our medication. Many many on here have gone the route of listening to endo's twaddle on about their ideas but they didn't get us well. In the end, in sheer desperation, we had to do it ourselves. If you know you need T3, you will either have to pay for a DIO2 gene test to prove it in black and white in order to get an NHS T3 prescription. Or buy it abroad on the internet. Or pay for a private prescription.

  • I do need T3, I have the DIO2

  • I was on T3 due to these results

    TSH 1.20 (0.2 - 4.2)

    Free T4 19.3 (12 - 22)

    Free T3 4.0 (3.1 - 6.8)

  • You need a new endo.

    Email Thyroid UK for list of recommended thyroid specialists dionne.fulcher@thyroidUK.org

    Also Thyroid UK are compiling list of patients who were doing well on T3 and then have it stopped with this typical disasterous crash in vitamins

    Email brief resume of this to Dionne

    Hashimoto's affects the gut and leads to low vitamin levels

    Low vitamin levels stop Thyroid hormone working

    Taking T3 away causes vitamins to nose dive as gut function collapses

    Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten

    According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

    But don't be surprised that GP or endo never mention gut, gluten or low vitamins. Hashimoto's is very poorly understood

    Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies

    thyroidpharmacist.com/artic...

    thyroidpharmacist.com/artic...

    amymyersmd.com/2017/02/3-im...

    chriskresser.com/the-gluten...

    scdlifestyle.com/2014/08/th...

    drknews.com/changing-your-d...

    Lots of posts on here about how to improve with Apple cider vinegar or Betaine HCL

    thyroidpharmacist.com/artic...

    drmyhill.co.uk/wiki/hypochl...

    scdlifestyle.com/2012/03/3-...

    healthunlocked.com/thyroidu...

    I have DIO2 gene as well. It has (with a fight) enabled me to keep T3.

    You need a new endo (and GP)

  • Endo's twaddle couldnt say it better myself-i have another appointment on 12th dec and i will get the BLAH BLAH BLAH. So glad you are great now!!💛

  • Hi again Zara1213 . I apologise but I haven't been able to keep track of what you have and haven't learnt about your illness. If you do have the DIO2 faulty gene, then do what I did - print out about 6 copies, take one to your GP and explain to him/her what it exactly means. GPs aren't really very clever at all. I did that. Then ask to see a different endo and give that endo a copy of your DIO2 results, and get ready to explain what it means. Endo's aren't always very clever :-) I saw an endo, gave her my DIO2 results and she gave me 6 months supply of T3 on the NHS.

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