Hi I've been on 150 of levothyroxine for about 2 1/2 years ,ever since I had my thyroid removed now my doctor wants to lesson my dose by 25 ,I don't know what to do as I am physically doing well on my original dose ,what will happen if it's to little x
Doctor wants to lower my thyroxine : Hi I've been... - Thyroid UK
Doctor wants to lower my thyroxine
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susanclark
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Hello susanclark,
Why does he want to lower your dose when you are feeling so well?
I have Hashimotos and had this fight with my endo who eventually gave me carte blanche to medicate on what dose I wanted to. He was worried about atrial fibrillation but my heart actually danced about more when I reduced meds as I was undermedicated.
If your endo is worried about oesteoporosis, offer to have a bone scan and calcium & Vit D blood test. I spoke with Dr P about osteoporosis and a suppressed TSH and he claims that as long as your T3 is in top quadrant of range, you will not be at risk.
Do not be bullied. You could end up feeling very unwell if you reduced your meds and ended up undermedicated.
Flower007
susanclark• in reply to
Thank you for your reply ,I have some anxiety,but that's nothing unusual for me and he said my blood test came back showing that my levels were fairly high I don't understand the technical stuff he was on about but I'm realy not wanting to cut my dose unless the advice came from an endocrinologist as unfortunately this Dr practice was the one that miss diagnosed me for years and years x
• in reply tosusanclark
Over medication can cause anxiety but then undermedication can too.
You can post your results complete with ranges (numbers in brackets) for members to comment and you could ask for an endocrinologist referral.
Flower007
If they insist, susan, can you go to a different practice? They may feel your TSH is too low but even if it is .40, it doesn't matter. Find out if your T4 is over the top of range and see if that is the reason. That also may not matter if you don't have symptoms of hyperthyroid. If you can get a free T3 test, that would be more indicative of something.
Worse comes to worse, if they will not fill your current dose, you would do better to order what you need to keep yourself at the dose that agrees with you.
Thank you for your reply ,I think my doctor has kind of left it up to me wether I take less levothyroxine ,but I have always suffered depression and anxiety and I'm also going through the menopause,so to mess about with my medication might not be the best solution,I'm so confused ,and also a bit worried about asking for a copy of my blood test I feel they may think I'm questioning them ,I live in a tiny village in the north east of Scotland,it's very different here to the great outsiDe world we all know each other still if it's my right then I should ask ,thank you your all very kind to take the time to help me x
• in reply tosusanclark
For piece of mind, if you would like your test results analysed but don't want to appear questioning, you could always have a private thyroid profile and post results here. Some members have excellent experience and probably know more about the thyroid than most GP's anyway. Details on ThyroidUK website.
If you are not that bothered, know what dose is right for you and have the confidence to just carry on taking, even if you have to buy it yourself.
I totally agree that being menopausal is not the time to start messing with thyroid hormone doses.
If you feel your dose is right but your meds aren't quite working as they should, ask your doctor to check your Vit B12, VitD, Folate and Ferritin as thyroid meds require optimal levels for utilisation.
Another possibility is too high or low cortisol levels caused by stress (anxiety) but also by a poorly managed thyroid disorder. Again normal cortisol output is required for maximum thyroid med utilisation. It may be that you might benefit from a slight dose reduction and a little adrenal support.
It is a huge subject with lots to learn and good reads are "Your Thyroid and How To Keep It Healthy" by Dr Barry Durrant Peatfield and "Adrenal Fatigue, The 21st Century Stress Syndrome" by Dr Wilson.
Flower007
As suggested elsewhere, if you can have a private Free T3 blood test it will show you exactly where it is in the range. We need T3 in all of our receptor cells and if it is low we cannot saturate our cells so that we can function normally. Also T3 is used for depression too soa small dose might be very helpful to you. Some don't convert levothyroxine into sufficient T3.
Susan, I also live in the N/E Scotland on a country estate.
I ask for, and get a print of my blood results (with ranges). They will give them to you, actually they have to.
If you wish to see an endo I see a very good one at Ninewells. He listens to you, discusses your treatment and is quite agreeable to prescribing T3. I will pm his name if you would like me to. You can ask to see a named endo and I am assured you can go out of your area. I assume you are either Aberdeenshire or Tayside. I am just into Tayside.
Barb x
Musicmonkey• in reply to
Flower I just wondered if you are able to say more about Vit D. I have had the GP concerned about my level of Thyroxine and wanting me to reduce it for fears about my heart and osteoporosis.
As a result I agreed to another battery of tests which did show low Vit D.
The GP prescribed me a very small dose of Vit D3, but I am taking more (2400 daily until my order of 5000 arrives when I will take 10,000 for a few weeks then reduce to 5000) and also Vit B12 Complex and Folic acid.
• in reply toMusicmonkey
Vit D is extremely important for thyroid issues and strong bone health. There is plenty of reading available but here is a link to get you started.
goodhormonehealth.com/Vitam...
And for slightly easier reading stopthethyroidmadness.com/v...
Flower007
Musicmonkey• in reply to
Thank you for the links Flower - much appreciated.
Don't forget to take Vit K2 with high dose Vit D3, to make sure it goes to your bones and not arteries,
Re. B12 and folic acid supplementation. I notice from past posts that your B12 level was low. There is not probably not enough B12 in a B complex with folic acid to correct a deficiency. You need at least 1000 mcg. a day. I take Jarrows 5000 mcg sublingually. This excellent film gives good info and advice on B12 and folic acid:
Polaris - After I bought 6 months' worth of a combined Vit B12 and Folic acid I had advice from Clutter and have now bought a sublingual B12 Complex that gives me 1200 mcg and a also bought separate Folic acid.
My D3 has arrived and I will now take 10,000 of that. Should I take that in two separate doses, or all at once?
I didn't know about VitK2. What more can you tell me about that?
Sorry if I am hijacking your thread SusanClark.
Sorry MM - that seems fine !
I take my 5000 D3 with K2 in two separate doses.
K2 is in butter, cheese, egg yolk, cod liver oil, etc. - more info here and in the book by "K2 - The Calcium Paradox - How a Little Known Vitamin could save your life" :
This is a link by a scientist and because nowadays doctors are poorly trained in hypothyroidism, it is all a guessing game and we are more likely to develop heart problems with too low a dose than by too high a dose. The reason being if we were taking too much we would feel so awful with symptoms that we'd reduce it ourselves.
web.archive.org/web/2010103...
If GP wants to reduce levothyroxine due only to your TSH result, refuse and say you feel fine. Also say you can be sent for a heart check-up if he's worried.
Thank you I will do that have a good night x
Susan, ask for another blood test but don't take your levo before the test which should be as early in the am as possible. Just take your levo after the test and you will be fine.
Jo xx
NEVER let your doctor reduce your dose based on blood tests alone!! You have the right to say NO!! If you are feeling well then employ the broken record method - just keep repeating you are fine on your current dose, till your doctor backs down and they will!!
If it's too little you won't feel well. Tell him you are fine on that dose. If he wants to reduce it then ask for a little T3 to replace it.
They will follow up with a routine blood test which will show if it's too low for you. Discuss any concerns with your GP - they should listen, offer help and explain things to you.
Thank you all you have helped me a lot I will follow your advice and stick to my dose as I'm physically ok apart from putting on a lot of weight but I was no light weight before x
Then that probably means that your dose isn't high enough! Weight-gain, anxiety and depression are all symptoms of Under-dosed hypo. And you were probably 'no light weight' before because you were hypo.
Hypothyroidism doesn't start the day they diagnose you, it starts years and years before, with the symptoms gradually appearing, weight gradually increasing and hair gradually getting thinner. Nothing is rapid in the thyroid world. 
How to raise FT3 to upper quadrant? Mine is currently 4.8 (2.8-6.8) so I need to raise it to 5.8. I'm taking 125 mcg Levo. Is there a supplement or is a prescription required.
It dépends how well you are converting. And to know that, you need to compare your FT4 and FT3 results from blood taken from the same sample. If you have both results, then post them here and we'll be able to tell you.
But in order to be able to convert well, you need to optimise all your vitamins and minerals. For a start, ask your doctor to test :
vit D
vit B12
folate
iron
ferritin
and post the results here. We'll then be able to advise you what needs supplementing and how to do it.
Thanks greygoose.
My TSH and FT3 and FT4 results have been:
- TSH: most recent 0.45 (range 0.3-4.2). Previous results were: 5.28, 25.94, 2.79, 0.017, 1.09, 4.44.
- FT3: 4.6 (2.8-6.8). Previously 3.9, 3.5, 5.76, 3.96
- FT4: 17.13 (12-22). Previously 9.16, 10.46, 20.3, 14.86.
My other results were:
- B12: 626 (211-946). Previous 861, 1134. Severe 150-200. Bad 200-220.
- Iron: not tested this time. (6-35). Previous 21, 11, 9
- Ferritin: not tested this time. previous was 68 and 69 (20-250)
- Folic: was 33 (7-45)
Would appreciate and welcome any thoughts or suggestions.
I cannot imagine why he wants to lower your dose, your TSH isn't even blow range. It's just nice for most people. But your FT3 is below mid-range, and your FT4 is only just above mid-range. You're not converting terribly well, but even so, you could do with an increase in dose, rather than a decrease. Your doctor obviously doesn't know very much about thyroid!
Ask him to explain why he wants to reduce it, and if he starts muttering about osteoporosis and heart attack, tell him that it has been proved, scientifically, that TSH has nothing to do with osteo and HA, it's high FT3 that causes those things, and yours isn't high enough to be make you well, let alone cause problems of over-dosing. See what he has to say to that! But you must tell him you Don't agree, because if you say nothing, he'll take that as consent.
Your B12 could be higher - optimal is 1000. Your iron/ferritin a bit low. Are you on any suppléments? Vit D should be tested, as well.
Hi, I have been pretty steady as far as doseage of thyroxine goes taking 100g for 5 days and on Mondays & Thursdays taking 125gm,,, feel well andDr in Scotland says levels ok but monitors annually. I have been tested in Portugal and they say my levels are too high and I should drop to 25g from now ( end June till August ) where I will have another blood test and also have my Thyroid checked ? Please can you advise if this large reduction will cause issues? My blood test shows T4 Livre -FT4 = 1.69ng/dL and TSH = 0.076. I am afraid of feeling unwell and also gaining weight and thinning hair! Should I continue with what Dr has asked or seek second opinion? Thank you x
Dav, it really would be better if you posted a new question of your own, giving all the details. Very, very few people are going to see this question, tagged onto an old thread.
Just click on the green 'write post' button at the top of the page, and follow the instructions. And put the range for the FT4, please. The result on its own means nothing, so it's impossible to answer your question right now.
I had mine removed 14 years ago and was also on 150mcg for years. During that time I had many problems which I now see was probably linked to the highish dose of levo, including a hip replacement (substantial reduction of bone mass in both hips) carpal tunnel, leg pains ... I could go on. However the dosage was reduced to 125 and now I am on 5 x 100 and 2 x 125. My endo has said she would like me on 100mcg daily only, however that dosage makes me sleepy and prone to putting on weight, so I insisted I stay at present amount for now. I think there is some evidence of bone loss and also heart problems on highish doses of levo taken for a long time. Perhaps discuss this with your doctor (sadly, often they really don't know what they are talking about when it comes to thyroid probs, I have found from experience), but your endo should be the one to make the suggestions, not your doctor.Finally how you feel is very important, but I would say when my dosage was first reduced I felt very sleepy but my body seems to have adjusted to it.
Thank you for your help ,I do have hip problems also ,but they just tell me it's wear and tear,I have a pill phobia at the best of times so I'm obsessed with taking my thyroid Med at the right time and a good time before food etc I'm so confused ,I don't have an endocrinologist,prob to expensive or we don't have one round here ,I've been going to docs for years with severe pms and never been offered to see one ,they even forgot to put me on the thyroid register ,until I asked how would I know to come back for blood tests ,still I could go on about the way I've been treated for a very long time 😁xx
Susan you may actually feel better on the lower dose, I was on 150 for years and doing well but reduced to 100 on Endos advice and I'm doing just fine on it.
Thank you for your reply ,what I can't understand is if we have no thyroid at all how do we get away with such a small dose ,as I think the dose goes up to 300 I'm very amateur at all this x
Preferably, if you have no thyroid gland at all, the addition of T3 would be more helpful. They should never, ever reduce thyroid hormones according to your TSH result as it varies throughout the 24 hours in each day.
If you are feeling fine, resist the change as it will probably cause you problems.
I agree with you, susan, as it is hard to believe 100 mcgs. would replenish what you need. I know sometimes other organs try to replicate the loss but hardly as much as you need. Maybe she converts ALL of her total hormone into free T3 which would also be amazing I think.
I was asked to lower my dose several weeks ago from 125mcg to alternating 100/125mcg as my T4 went slightly over range and I feel really, really unwell now. I wasn't back to health before to be honest but I felt better than I do now! My endo and his team are unhappy about Reinstating it now as my results are in range and will not discuss an increase again until the middle of August when i have my next set of bloods. I would advise making the GP absolutely promise to reinstate your dose if you become symptomatic again before agreeing to trial a lower dose. I'm really cross with myself for agreeing to a decrease as I'm suffering for it now.
Louise x
• in reply to
Always try to stock pile meds incase of this situation Louise80.
You could always buy some.
Flower007
Once again I'm very grateful to you all for your advice x
They are not allowed to decrease your dose without your permission if you are feeling ok on the dose you are on, I stood my ground and they kept me on the original dose
Hi all. I was diagnosed with underactive thyroid at age 22 although had been symptomatic for years before that and undiagnosed. I have been taking 250mcg for 2-3 yrs and found out about a year ago I have celiacs disease which is also autoimmune (I have a very strong family history of autoimmune disorders) which may explain why I have needed such a high dose. My gp has been saying for about a year n half that he wants me to reduce my levothyroxine as my tsh was low. I have always argued against this as in the past every time i reduced I would get symptomatic with lethargy and depression. I finally gave in and took 225 mcg which I have been on since Sept. I now feel really not right...I am having severe lethargy in the mornings which takes almost all day to half resolve. It is getting to the point where I am worried I could have an accident as I am so tired when I'm driving my partner to work in the mornings. Gp has agreed to write to my endo but that doesn't help me in the here and now...could be ages to get a reply. I am worried there is something else going on as my b12 and folic acid was also low and I take vit d as I was severely deficient when I was diagnosed with the Celiacs which I put down to non absorption with the celiacs...but the answer is I don't know... I currently take 3000 units vit d and high dose b12 and folic acid tablets - I'm told these are now normal range...feels like all I ever do is pop pills and everytime I reduce the thyroxine I get worse. Not sure what to do!
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