increase in levo

hi has anyone increased there levo without a gp say so? I am on 75mg and have been for 9 months it was like pulling teeth to get that much!! I have a couple of hours where I have a lot of energy then its back to everything being an effort I want to try 100mg to see if it would give me more of a constant flo of energy throughout the day without this flagging

am seeing the gp tomorrow was just interested in other peoples thoughts thank you in advance oh yes my last bloods were normal lol

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  • welly1 What's 'normal'? Post your results with reference ranges and members can comment whether you would benefit from an increase. The aim of a treated hypo patient generally is for TSH to be 1 or below or wherever it is needed for FT4 and FT3 to be in the upper part of their respective reference ranges. Is that where your results lie?

  • will get a copy of my results tomorrow but whe is it so bloody hard to get them to at least let you try an increase they don't have to live with you every day and have no idea what its like we all know ourselfes better than anyone sorry just frustrated with it all thanks for the reply x

  • welly1 It seems to be such a battle for so many hypo patients. Doctors really don't know enough to treat us properly, many endos don't either, all they see is a number and if it's within the range then you're symptoms must be due to something else. It's very sad. No wonder so many of us take things into our own hands.

    Ask for a print out so there's no inaccuracies with the receptionist giving you wrong information, and ensure the reference ranges are included. If you've had vitamins and minerals tested too (Vit D, B12, Folate, Ferritin), and antibodies then get those as well. Post all the information and members can comment.

  • thank you suzie I will tomorrow when I get them but gps just don't listen would be easier to be a diabetic! they listen then lol thanks again and I will post them tomorrow

  • Before the blood tests were introduced, our doses of NDT were around 200 to 400. One doctor (not an Endo) tried to enlighten the Endocrinology Depts that nowadays we're given too low a dose to enable us to get well. They wouldn't listen of course. Dr Skinner has now died so the World Thyroid Register is closed. There is still one page and you can read what he said if you cursor down just after the email address of Afshan there is an excerpt which is worth a read.

    worldthyroidregister.com/Go...

  • You may be able to negotiate an increase by suggesting an extra 25 mcg, every other day, and saying you'll pull back to your previous dose if you experience any symptoms of over substitution.

  • Have you any symptoms? They may not directly be down to lack of Levo but the other things that help your Levo to work better. SeasfeSusie has mentioned those so get those tested and again post your results and ranges for comments. Again many doctors think if they are in range then you are fine but again where in the range are important. My GP admits she dmhasnt a Clyde and it Happy for me to go elsewhere for help. When I first had my folate tested it was under the range and she prescribe medication. It did rise but barely in range and she was quite happy to give me another course of treatment once I pointed it out so I sometimes think they are so busy they only look for the Lab writing H or L beside results, another good reason to get a print out of your results!

  • Hi there

    To begin with, I'm sure you mean 75mcg & not mg !!!

    Have you seen an Endocrinologist? Have you had an Ultrasound scan of your Thyroid?

    What is your diagnosis?

    I have AutoimmuneThyroiditis (Hashimoto's) & Hypothyroid.

    So I can only speak from my own experience. Everyone starts on a lower dose then it is later increased. The way it works is quite complex and can only be explained by the medically qualified.

    I was started on 50mcg and eventually increased to 75mcg. I asked the Endocrinologist if I would be increased to 100mcg but was told 'no' as one of the side effects it might cause is osteoperosis.

    In my opinion Levothyroxine is not something we can self-medicate with. Your Dr will go by your most recent blood results to decide your dose. If they are happy with your blood tests now you are on 75mcg why do you want to increase?

    I don't think you will get the result you are seeking from a higher dose anyway.

    I suffered for many years and was not diagnosed until 2011.

    Hashimoto's is not curable, it is the Underactive Thyroid which is causes that is treated.

    I hope this has been of some help.

    My advice? Please keep to the dose you are prescribed.

    Thinking of you.

  • Hi - actually no, you will find that most "medically qualified" people are totally UNABLE to explain how the thyroid works as they simply don't understand it. And yes you absolutely can self-medicate and, if you ever read posts on here, you will find that many, many people do as that is the only way to regain and maintain their health, having usually spent many years being mis-treated by those very medical people that you seem to have such faith in.

    Have you never read the multiple posts on here that show doctors being happy with "in range" results yet the patient still having multiple, debilitating symptoms?

  • hi thanks for your reply yes have read many posts on here I still cannot understand why the medical profession do not understand about thyroid illness that's why I feel I could take care of myself better to a point

    I asked to be put on ndt as it has less additives in it and the gp said whats that!!!! nore did any gp I have seen knew what thyroid s was its shocking! was thinking of going abroad where they DO understand about thyroid problems just to get sorted out to me it would be worth it

  • Hi - oops sorry for misunderstanding, my comment wasn't aimed at yourself. It was aimed at the previous commenter Mary-intussuception who says basically trust the doctors and obey whatever they say. That is totally at odds with the experience of this group.

    I can't add anything to what has already been said, but I hope you feel better soon.

    Gillian xx

  • Dear Gillian

    If you read my post you would know that is not what I said. I know all about medical neglect.

    I was helping Welly with some points she might wish to raise with the Dr depending on her symptoms and diagnosis to date if any.

    She has not yet replied so I don't know her symptoms/diagnosis.

    After years of medical neglect I phoned a woman on a Thyroid helpline. She was a teacher who'd retired early in her mid 50's as she couldn't cope with the tiredness. Her GP fobbed her off with 'it's The Menapause' well, they're not allowed to say that now are they? She lost a large amount from her pension.

    She has Hashimoto's.

    She diagnosed me by simply listening to me explain all my symptoms over the phone. She said I have Hashmoto's and told me to ask my GP for an Ultrasound scan of my Thyroid. I didn't have the courage to for a long time and after more suffering.

    I had to be careful which GP to ask. The consultant radiologist was a good one. The scan results were faxed/emailed immediately and I was referred to the Endocrinologist. The one I saw was OK.

    I have had many bad experiences with NHS and so have members of my family and friends. I don't know where you are but I am in UK. Unless you can afford to pay for Private Doctors you have to keep on at the NHS - it's not easy. Can wear you down, you rest, get up and start again. I recommend anyone with my symptoms to ask for an Ultraround scan of the Thyroid. The TSH range is different with Hashimoto's.

    I am a Christian. I pray for and when I can, help others. However I am ill and writing takes me a long time and gives me pain (which is quite severe now).

    Through prayer and another helpline my husband's eyesight was saved. He had a rare condition and was severely medically neglected and wronged but that' s another story. I lost our baby at 16 weeks, he had died I was in labour. He was still alive when I was admitted a month previously, but he was very small, not growing. radiologists decided I was only 7 weeks. Reducing the length of the pregnancy to fit the size of the baby on their scan. Apparently simple daily aspirin may have helped.

    Medical errors & neglect? I could write a book about it - sorry a Library.

    By the way, my eldest brother died of medical neglect aged 55.

    Let me assure you no judgmentalism or offence was intended.

    You are precious, we all are.

    God Bless

    X Mary

  • Mary-intussuception,

    An ultrasound scan will determine the size and condition of your thyroid gland and will show whether there is atrophy and damage or nodules and cysts. It won't indicate whether you are optimally medicated.

    There isn't a different TSH range for Hashimoto's hypothyroidism.

  • I did not say that an Ultrasound scan shows whether or not you are optimally medicated so I don't understand why you feel the need to say this.

    I asked for my scan to find out if I had Hashimoto's.

    The following day in the GP's I was given a prescription for the starting dose of 50mcg as well as referal for Endocrinologist. I chose not to take the tablets until after I'd seen him. I'd suffered and waited so long for this, I thought I'd wait another month. He was surprised that no one had told me 3 yrs earlier my bloods revealed Hypothyroid. Because I hadn't started the tablets he did a range of blood tests (which GPs don't do -AS FAR AS I KNOW -) He was also able to arrange the test to check my adrenal glands first (Synacthen - or something like that). He contacted me when he had all the results to OK my starting the Levothyroxine. My dose was increased to 75mcg. On my third visit I said I thought I would be increasing to 100mcg (because of what I learned researching this) I was told 'no, because one of the side effects of Levothyroxine is Osteoperosis '.

    My TSH was now on target.

    My Target TSH is much lower than the low end of the normal range of TSH. As you know there is no cure for Hashimoto's.

    The aim is to treat the Hypothyroid and protect the Parathyroid Glands from over secreting TSH.

    Mary

  • Mary-intussuception,

    I felt the need to say that about ultrasound scan because I thought you were suggesting it would show whether Welly1 was optimally medicated on 75mcg.

    Suppressing TSH below range reduces stimulation of thyroid cells which is helpful in reducing Hashimoto's flares and recurrence of cancer in thyCa patients. It's not a separate Hashimoto's range.

    The pituitary gland produces TSH to stimulate the thyroid gland to produce thyroid hormone. Parathyroid glands do not secrete TSH. The 4 x parathyroid glands are responsible for producing parathyroid hormone to regulate calcium and phosphorus.

  • It' a long time since I looked at my notes. I'm sure you know what I mean. All I did was reply to someone who asked for peoples thoughts.

    I' m tired - which is not surprising. -

    I got my terminology mixed up.

    I never said this morning that Welly1 should ask for a scan to show her levels. She said herself her bloods were normal.

    I think the best thing for Welly1 would be to sit down with a specialist and discuss her symptoms and have thorough investigations.

  • Mary-intussuception,

    Inaccuracies need to be corrected because not everyone will know what you meant.

    Normal is a very broad range which is why we ask to see results and ranges. TSH 0.28 and TSH 4.19 can be in the same range 0.27 - 4.20 but a patient will usually feel better with range 0.27 - 1.0 than higher. It really doesn't matter if TSH is below range as long as FT4 isn't too far over range and FT3 remains within range.

    Hypothyroidism is usually managed in primary care. There's no reason why Welly1's GP shouldn't trial a higher dose to see whether it resolves his/her symptoms. A referral usually means 3-9 months wait for a consultation with an endocrinologist IF the endocrinologist will accept the patient.

  • That's not my experience.

    If my GP had put me on Thyroxine from the Hypothyroid Blood Test Results I may never have been diagnosed with Hashimoto's.

    As I have already stated I can only speak from my personal experience.

  • Hi - I did read your post and that is exactly what you said. I am also in the uk and have never seen a private doctor, but I have done a couple of private tests and taken control of my own treatment in partnership with my (NHS) GP. If, as you say, you have had bad experiences, then why are you advising others to repeat your mistakes? Maybe you should read a few more posts! I don't mean to be rude, but I think we should leave this here as I don't believe anyone will gain anything by continuing.

  • No you have misquoted me.

  • You have seriously misquoted me and caused confusion. You know I did not say as you say 'trust the doctors and obey whatever they say'

    I have helped many people in the past who did not get the right or adequate medical attention. You shouldn't make sweeping generalisations.

  • Mary-intussuception,

    Your post appeared to suggest that Welly1 should accept what his/her GP said. Startagaingirl isn't causing confusion or making sweeping generalisations.

    I'm closing this thread to replies now.

  • Welly1,

    NDT isn't licensed for UK use so there's no reason why UK doctors should know anything about it. If you said Armour or Erfa some doctors may have heard of them even though they may not be willing to prescribe medication they know nothing about.

  • There is no scientific evidence that a low TSH from medication causes osteopososis (or heart disease) BTW. Rotterdam study. The only evidence for thyroid and osteoporosis is from patients with Graves or other HYPER thyroidism, who would have very high T3 and T4 as well as low TSH. Many GPs don't even seem to know the difference between T4 and T3.

  • I am sorry to have to say, Mary-intussuception, if I had done what you are suggesting, and done what my GP told me, I would be dead. I had already begun to have mini strokes on an almost weekly basis. It was only a matter of time beforeI had a major stroke. The mini strokes were triggered by my GP insisting that my TSH indicated I was overdosed on 150mcg of Levo, and summarily reducing from 150 to 100. Without questioning, apart from feebly objecting that I did not feel overdosed and was only just coping on 150, I did as I was told.

    Eight weeks later my cholesterol had risen from 4.7 to 9.7 and I was having mini strokes. My asthma had increased dramatically and I was using my inhaler several times a day. In those eight weeks my weigh increased by half a stone. I became more and more ill, ended up on statins and blood thinners, two kinds of inhalers, yet my GP flatly refused to entertain the possibility that it coul be the reduced dose. Levo had never really suited me, but at least I could function. Now, I was even using a wheelchair to get about!

    I took matters into my own hands some five years or so later, first increasing my Levo. This did not work because, I realise now, so much damage had been done by the too low dose that there was a chance I might never recover, being already well into my sixties.

    In the end, T3 only was the only solution, I have my life back now, I had help from Dr Peatfield initially, but now I am managing my own medication and having private blood tests to monitor myself. I am 72 now and healthier now that when I was 50. I do not have ANY asthma, it was entirely thyroid related. My cholesterol is 4.5 without statins, and my weight is stable. I am able to walk without problems and do all my own housework plus caring for a sick and disabled husband. There are a lot of other issues which have been resolved but it is too long already!

  • Marram

    I haven't suggested anything to you.

    So don't know what you are talking about.

    I haven't time to read your post now. Running late and in pain.

    Mary

  • "In my opinion Levothyroxine is not something we can self-medicate with. Your Dr will go by your most recent blood tests to decide your dose."

    I was not assuming you were advising me particularly, but I took that as a general statement, which thus applies to me as well as everybody else. As such, I was making my point that in my case, following this would have been disastrous. I have high Graves' antibodies despite a TT, and as a result my TSH is never very high. He was aiming at a TSH of 1.4 which, for me, is far too high.

    I do apologise if I did not express myself very well.

  • No, I wasn't generalising. I was speaking in reply to one person only with regards to one situation.

    We are all individual. I wasn't giving general advice to anyone.

    And I said I could only speak from my experience and in my opinion.

    Welly1 said she was seeing her Dr today and asked for peoples thoughts. I offered some thoughts which she may or may not consider. That's up to her. What she described, I have experienced. I felt for her. But she didn't say what her diagnosis is nor the time of her appointment. It's not even clear if she has seen an Endocrinologist.

    She said she was thinking of increasing to 100mcg from 75.

    She also said that her bloods were normal.

    What do you think? Do you think she should increase her dose?

    I think she should ask for an urgent referal to an Endocrinologist.

  • Hi marram

    Your story is very inspiring, you have really turned your health around.. thanks for sharing your story xx⭐️

  • Hi

    Having been in the same situation myself I went and had all my thyroid tests and vitamins tested through blue horizon- they were woefully low. I'd been in hospital and no one even mentioned my vit d deficiency.

    So in answer to your question you need seasidesuzie is right get everything tested and your tsh needs to be under1. Free t3 and free t4 near the top of the range or until you feel better. No sense in having a range and being half way along it and flagging. To achieve that you may well have to top up your own meds. I played it right when they said oh good results I replied oh I increased them and they've gone along with them.

    The saying it's easier to ask for forgiveness than permission definitely applies. It's your health so you've got to take the lead.

    Good luck and ps 75mcg is tiny.

  • I have the same problem. If your levels are within range then the doctor will not increase your dose as they follow the suggested levels.

    These do not work for me either and when I take an extra 25 mg (I take 175 mg) it makes a lot of difference. Talk to your doctor and ask him to increase under supervision to see how you tollerate a higher level. -JD

  • I would increase slowly and see how you feel. 25mcg increase for a couple of weeks, maybe even 6 weeks with Levo, before increasing more. I did it myself with T3 and after a few months went to request a blood test and "fessed up" to the doctor what I had done. As I was right at the top of the range, and feeling good, they were fine to up my prescription at that time. Definitely agree with asking forgiveness is easier than permission with this. Just keep a close eye on your symptoms and what your body is telling you, you don't want to go too far as I hear that can make you feel even worse (if that's possible!). Good luck!

  • Yes, I have increased levothyroxine myself. Didn't like having to do it but a new dr at our practice kept me on 75 mcg when my TSH was 2.4 and I did not feel well. I remember she said "That's enough". (I could not get out of a chair I felt so weak and had lots of muscle and joint pain).

    I increased it to 100mcg for around 8 weeks and then went to see her. I had to own up to what I had done and she sent me for a blood test. Long story short, I am now on 125 mcg with her blessing and feeling much improved. Only you know how you feel and I had to do something because she was effectively keeping me unwell and I felt disabled. I don't blame her because it is lack of knowledge but we must educate ourselves. Obviously I am one of those people who need to be at the lower end of the range. Last blood test showed I was 0.4 (perhaps borderline from the lab), but there is no way she is going to reduce the levothyroxine and keep me ill!

  • Welly1,

    Post your results and ranges (the figures in brackets after results) in a new post and members will advise whether they think you are optimally medicated.

    I do think it is legitimate to self medicate when GPs or endocrinologists are unco-operative and I self medicated for six months to fix myself.

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