Hi when can I expect to feel better on 50mcg Levo. Diagnosed 2012 and have symptoms of joint pain, difficulty swallowing, dry sin, heavy periods, tiredness, broken sleep, pins and needles, puffy eyes, dizziness and loss of balance especially when on a period (guessing from lack of iron?) feeling cold and having cold hands and feet. Felt better on much higher doses. Endo says she does not adjust dose and GP told me my TSH has only just crept up a little bit from 4.3 a month before so no adjustment needed. Thankyou
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Amber556
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Hi amber556, I'm new here but I couldn't help but respond to your post, I'm not an expert just a thyroid sufferer that was diagnosed with fibromyalgia/chronic fatigue syndrome in 2006, that was put on levothyroxine in 2008, spent 13 years with almost all the symptoms you mentioned. I noticed your T3 is low and I found out in the beginning of 2017 that my T3 was low and also my magnesium(caused ringing and hunming in my ears and muscle spasms)...I stopped taking Levo and went on Nature Throid-a natural desiccated thyroid replacement therapy and my depression and pain went away! Yes gone! I also found out I have adrenal fatigue and went on cortisol replacement therapy because the NDT caused a high reverse T3 hormone level in my lab work and my symptoms started coming back due to the active T3 not getting into my cells. Now after being on the cortisol replacement the NDT is doing its job and my fatigue is almost non existent and I feel absolutely wonderful. Good luck to you
Thankyou so glad things have worked for you. I felt better on T3 but this was removed despite it helping me. Now feel like I am back to square one again with what the GP has been doing with my dose.
That is what happened to me, felt great when started on NDT then felt bad again and my Free T3 went down to 2.4 from 4.0 and my Reverse T3 was high at 19, was told it was due to cortisol issues (adrenal fatugue) now still on NDT but Lower dose and put on hydrocortisone (low dose steroid) and that's when I started feeling great again. Waiting for thyroid labs to see if NDT is converting. It must be helping because I have been able to go done on my hydrocortisone dose and still doing good, no depression, (no depression meds anymore) no more pain in my hips and feet (no more fentanyl pain patch after 10 years) no more fatigue. Best of luck to you
Amber556 Both your endo and GP have no idea! Your TSH is out of range for goodness sake! What are they thinking? Also your FT3 is below range and your FT4 barely scraped in! You need an immediate 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 when on Levo.
According to the BMA's booklet, "Understanding Thyroid Disorders", many people do not feel well unless their levels are at the bottom of the TSH range or below and at the top of the FT4 range or a little above.
Booklet written by Dr Anthony Toft, past president of the British Thyroid Association and leading endocrinologist. It is published by the British Medical Association for patients. Available from pharmacies and Amazon for about £4.95. It might be worth buying, highlighting the relevant section to show your GP and Endo in support of an increase in Levo.
Also -
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)."
Email louise.roberts@thyroiduk.org for a copy, print it and highlight question 6 to show your GP and endo in support of an increase in Levo.
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I'm assuming that you know that your high antibodies mean that you are positive for 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.
These fluctuations can cause you to swing from hypo to hyper - this happens when the antibodies attack the thyroid and the dying cells dump a load of hormone which causes the hyper swing. This can give symptoms and results of overmedication. However, the swing is temporary, things will go back to normal and you'll become hypo again. Dose adjustment can be made when this happens and readjustment when things settle again. The dose adjustments should never be a massive reduction though.
You can help reduce the antibodies by adopting a strict gluten free diet which has helped many members here. Gluten contains gliadin (a protein) which is thought to trigger autoimmune attacks so eliminating gluten can help reduce these attacks. You don't need to be gluten sensitive or have Coeliac disease for a gluten free diet to help.
Supplementing with selenium l-selenomethionine 200mcg daily can also help reduce the antibodies, as can keeping TSH suppressed.
Read and learn about Hashi's so that you can help yourself, your doctors obviously aren't going to -
Some of your symptoms are indicative of low nutrient levels, which tends to go hand in hand with Hashi's due to gut/absorption problems. Have you had the following tested, if so please post results with reference ranges for comment and say if you are supplementing and what with plus dose. If not ask for them to be tested:
Well that was stupid and shows how ignorant your doctors are. If FT3 is in range you can't be overmedicated.
The doctor who prescribed the T3 should also know how it works (simply because he is prescribing it). Taking T3 generally lowers TSH and often suppresses it.
Doctors should also know, but very few seem to, that TSH is a pituitary hormone. The pituitary looks to see if there is enough thyroid hormone available. If not then it sends a signal to the thyroid to produce some, that signal being TSH (Thyroid Stimulating Hormone). In this case the TSH will be high. When taking thyroid meds the pituitary detects there is enough thyroid hormone available so it doesn't need to send the TSH signal, hence TSH will be low. It's hard to believe that these people who are supposedly meant to understand hypothyroidism and how thyroid medication works, can be so ignorant of this information.
There seems to be an epidemic of this ignorance that we are reading about on the forum lately. I really, really don't know how we can educate them
You are allowed to object, you know. Silence is taken as consent, so let them know how you feel about the dosing you by the TSH. It is wrong. No two ways about it. And it's the best possible way to keep the patient sick.
Your doctors are not there to dictate to you. They are there to advise you. But how the hell can they advise you if they have no idea what they're doing? They can't. And you have the proof that they are just making you sicker. So, I'm afraid it's down to you. Do your research, learn about your disease, take charge and put your foot down. It's the only way you're going to get well, I'm afraid.
Ha ha! They should be on the stage! What duo! So, what do you say? I am already ill because you keep changing the doses? I would. Call their bluff. Ask for the proof in black and white. Where does it say that they should be changing to dose according to the TSH? Where's the science that says a low TSH means over-medication? Because there's a lot on here that says it doesn't! Try looking at the post and responses of diogenes, on here.
You are appallingly under medicated. Your endo (and GP) are totally mismanaging your Hashimoto's
Hashimoto's very often affects the gut, leading to low stomach acid, low vitamin levels and leaky gut.
Low vitamins that affect thyroid are vitamin D, folate, ferritin and B12. Important to test these.
If they are too low they stop Thyroid hormones working.
Have these been tested, if not ask that they are. Always get actual results and ranges.
As you have Hashimoto's then hidden food intolerances may be causing issues, most common by far is gluten. Changing to a strictly gluten free diet may help reduce symptoms. Very, very many of us here find it really helps and can slowly lower antibodies.
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