Thyroid UK
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GPDetermined to lower medication

I have not been here for a while. I would be grateful if someone would help to explain my latest blood test, which is as follows;

Thyroid function test_(MEH)_hyperthyroid_apt for rv

serum free T4 level. 22.8. pmol/L. 12.00_ 22.00pmol/L

serum TSH level. 0.27. miu/L. 0.27_ 4.20miu/L

I have Hashimotos and I take 100mg levothyroxine

I am concerned that this female GP insists my thyroid blood levels are too high and states she intends to lower my medication dosage.

when in fact I do not feel that great on the dosage I am taking

unable to lose weight ( I am 2 st overweight and at the rate my hair is falling I will be bald in no time.

if anyone can advise I'd be grateful.

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Margaret

The problem is that your GP doesn't understand hypothyroidism /test results/Hashi's very well.

First of all, your TSH is just in range, albeit at the bottom, and your FT4 is just a fraction over range. This doesn't mean you are overmedicated because there is no FT3 result and you can only be overmedicated if FT3 is above range (and you can't suddenly change from being hypOthyroid to hypERthyroid). 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 at tukadmin@thyroiduk.org print it and highlight question 6 to show your GP.

With Hashi's the antibodies fluctuate meaning that test results and symptoms can fluctuate. Your TSH may be quite low at the moment, a further test could show it quite high.

Are you addressing the Hashi's by being strictly gluten free and supplementing with selenium l-selenomethionine 200mcg daily to help reduce the antibodies?

Hashi's can cause gut/absorption problems which can result in low nutrient levels and deficiencies so it would help to have vitamins and minerals tested, they need to be optimal for thyroid hormone to work properly

Vit D

B12

Folate

Ferritin

It's also possible that you may not be converting T4 to T3 well enough and testing TSH, FT4 and FT3 at the same time will tell you that.

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Timing of testing is also very important. If you take thyroxine in the morning and then take your blood test of course it will be high. You are measuring the tablet which just moved into your bloodstream and it not yet absorbed into your body tissues. You should not take a tablet on the day of the test but arrange an early test for that day and take your tablet after the test. Assuming you take your tablet in the morning, that means you blood will be tested 24hrs after your last tablet. You will get a better, more accurate result.

Blood tests are unreliable. What is in your blood is less important than what it in your body tissues and organs. That is what determines how you function. The true guide is how you feel and your body symptoms. We also measure our body vitals - pulse, blood pressure and temperature as indicators.

I am on T3 but others here can tell you more about blood tests - both timing, T3 and rT3 which are missing from your results.

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T3sortedme

Is your reply meant for me, as you have actually replied to my post? If so then I am well aware of timing of meds before blood testing and quote it frequently.

If your reply was meant for Margaret, the original poster, then you should reply directly to her post.

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No, it wasn’t for you at all. I thought your comment was excellent and intended a separate thread to suggest importance of test timing. Apologies for confusion.

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Thank you T3sortedme

I appreciate your advice I never take my tablet on morning of blood test.

I actually have never sat in front of any of the GPs at my surgery and explained how awful I feel, the mood swings, skin problems, allergic hives/ itchy rashes, hair loss, gut problems, I find it hard to communicate with medical people who give me the vibes they couldn't care less. I believe I was told the GPs at my surgery don't as for T3 to be tested, they think it unnecessary.

I may have to go private, but as I said to SeasideSusie, they rubbished the previous private blood tests.

It is all an uphill battle, isn't it.

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SeasideSusie, thank you so much for your response and your valuable info

My problem at my surgery is that I'm never given an appointment with the same GP twice in a row and each different GP has a different opinion of my blood results, when I was put back to 75mg a day the dosage proved too low so it was agreed between myself and another GP to go back to prescribing 100mg and that I should tweak the dosage by scraping a fraction from the tablet, this brought the readings back to their satisfaction, but not necessarily mine, as I found I was falling into a "coma" sleep by 7pm every evening and my hair falling out more than ever.

What really upset me at my recent surgery appointment was the level of pure punitive attitude leveled at me, this GP even followed it up by leaving an agressive/passive message on my voicemail with the gist she is going to reduce my medication whether I like it or not.

I will definitely download Dr Tufts article, somehow I have the feeling his expertise will be rubbished at my surgery like they rubbished the results of private blood tests I had done a few years ago, I have the feeling at my surgery they are of the mind any thyroid condition a woman has is somehow caused by mental illness, I.e. a symptom of mental illness have you ever cone across this attitude?

I have another appointment next month, up till then I will be doing some extra tweaking with my meds. I will run my blood tests results then, by you for your opinion.

Thank you again.

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Margaret

I could have written your post, the part about the doctors at your surgery, their attitude, and the fact that one doctor says one thing and another doctor says something different. I have exactly the same problem. I am too old to be piggy in the middle of such nonsense, tell one that the other was fine with my result and dose of medication, only to be dismissed with a very sharp "I would reduce your medication" to which I replied "And I would refuse".

I am sick to death of their couldn't care less attitude, was recently told that "As a GP our role is to rule out anything serious or life threatening, that is all". Well, now I know why concerns are dismissed, referrals refused, investigations refused, but it does puzzle me how they can rule out anything serious without further investigation or referral. They fob you off with repeating blood tests already done umpteen times and come back normal, I suppose blood tests are cheap compared to other investigations though. So heaven help me if I have what is considered a "trivial" problem that needs treating but isn't life threatening. No wonder people who are patients at this surgery hate going and put it off.

As you have probably gathered, I do my own thing with thyroid. I take my prescription for Levo, have it filled, take less than they prescribe and add T3. Suits me. They don't know and I don't intend to tell them. I am not advocating that everyone should do this, but eventually we sometimes have to take things into our own hands if we actually want to live some kind of life.

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I also suspect that you aren't converting well. Chances are your FT4 is high in range but your FT3 is pretty low so you have excess FT4 as you aren't converting to the T3 which you need. I would refuse to lower the dose until FT3 is tested and explain why. Getting the Vits etc SSS has talked about optimal can reverse the problem but you need the breathing space to let it work and lowering your dose to lower your FT4 reading will also lower your FT3 even lower so at the moment your doctor is going to make you feel even worse. So get Vits tested and then optimal which will turn this around but you doctorcneeds to know that it needs time to let it work and dropping your dose won't help you to feel any. Ether, quite the opposite in fact.

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Some years ago this happened to me. My GP started to lower my thyroxine prescription. With the help of HealthUnlocked and Thyroid Uk I went ( privately) to an Endocronligist who was very supportive and put me on my present path to getting treatment for my complex health problems. He wrote a long letter to my GP and explained that my thyroxine should NOT be reduced. I remember when the reduction was happening to me I was in a terrible state and asked my GP if I could go to rehab to cope with the withdrawal. I even looked into going privately. It was something like £3000 a week. That shook my GP. There are doctors/specialists who can help you and this site and those who post on it are amazing. I have never forgotten the love, support and help given. You are not Alone. Big Hug and lots of love .

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Thank you Rose_holly, it is all very daunting isnt it,! I am going to muster up the courage to ask a GP to refer me to a sympathetic endocrinologist

with the hopes I will be lucky.

Why the medical profession has uncaring attitude towards Thyroid sufferers astonishes me, I find it more uncaring as much as ignorance of the condition and symptoms, after all they have spent 5/7 years training to become GPs

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Your results are all within range allowing for the confidence interval of the test. As you are symptomatic it’s highly unlikely that your dose is too high and as others have said your Free T3 may be too low due to a difficulty converting T4 to T3.

It’s an ongoing battle with many GPs who rely on biochemists to interpret test results instead of considering the symptoms of the patient sat in front of them. They have allowed themselves to be deskilled regarding thyroid disorders

For many years (about 20!) I increased my Levo so that tsh was suppressed to 0.01 or below and T4 just above the range. This was enough for me to feel well. And by the way - I didn’t develop heart disease, osteoporosis or any of the other scary things they suggest will result.

I chose my GP with care and made sure I always saw the same one. Reluctantly GP agreed to ‘overtreatment’ as my better well being was obvious on the higher dose. However eventually I have had to take T3.

Don’t let your GP choose your dose for you! That is my advice. When you start adjusting according to how you feel, you develop an instinct and can adjust until you feel well. You will never get well otherwise. The tests should only be used to check your ‘set point’ - your chosen place in the range, that at which you feel well.

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Thank you Aurealis

I agree with your every word. The GP who agreed I should tweak my dosage is no longer at my surgery so I have to contend with those I described in my post, in fact, I only tweaked my dosage because when it was lowered to 75mg it proved far too low hence reason I was put back on 100mg and the tweaking was suggested.

As regard my heart beat on either 100 mg or 75mg it is barely throbbing

because I am 2st overweight for my slight build and height, I try to do the sort of exercise that is suppose to work up a sweat, but I have to work so hard just to get my heart beating even slightly rapidly.

Before I developed a thyroid problem I was a very active person, I jogged every other day, rode my bike 18 miles to work per day.

I'm no spring chicken but I find it so hard to deal with the lack of energy.

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Since she has not bothered to test free t3 she has zero clue why you are not well and still putting on weight

Levothyroxine is T4 and has to be converted into T3 which every body cell needs to function

Hence my suspicion is that for whatever reason you cant convert

Usual susoects are

Ferritin

Folate

B12

Vitd3

Are below the requisite halfway in their ranges

Ask for abive 5 tests and come back with results then we will know

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Thank you reallyfedup123

I asked for t3 test and was told NHS don't do it as it is found to be unnecessary, I will ask for those tests to be done, thank you

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Could you get the T3 test done privately and bring her the results? If the pressure were off her financially from the NHS and you were willing to get your T3 done yourself, and purchase the medicine, then if she has any willingness to treat patients decently maybe she will work with you. Seems to me she is afraid of annoying the NHS and finds it easier to blame you. If you indicate you are willing to work with her and she still refuses to help get you what you need to feel well then IMO it's time to let her go and move on. BTW if I were making this request I wouldn't "ask', I would use a firm statement like "I may have a solution that would work for both of us." This takes the conversation out of the adult/child mode and puts you on an equal adult/adult footing with her. When we "ask" we give people permission to say no. You are not asking her permission to do anything. You are telling her you have a possible solution. The ball is in her court. If she doesn't agree then you know what you have to do. (A little psychology 101 for dealing with difficult people!) If I were a doctor under the financial bureaucratic gun and had a patient trying to find a win-win solution for both of us I would be grateful. This suggestion will tell you where she really stands regarding her concern for her patients. I might even say something like "I know your hands are tied but let's try to find a solution that works for both of us?" But maybe not- if her attitude tells me her head is still stuck in the sand. Then I would definitely find a way to get her out of my life. She is a toxic caregiver for you. Hopefully whatever you do I hope you find a way to get the care you need and feel better soon. BTW, it's good to have an extra "pair"! LOL. I do- mine are brass and I keep them in a drawer and bring them to all medical visits! 😀 LOL. Take care. xx irina.

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Thank you Irina

Your advice is sound and appreciated, unfortunately for me I did have a GP at my surgery who would work with me and we had a system going whereby if my T4 levels rose I would tweak the dosage till it got to an acceptable level, that GP moved on to somewhere else and I am left to deal with obstinate GP who treat me like I'm the stubborn one who must be cowed and put in place. the battle goes on.

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Hi Margaret, I'm sorry you have lost a good doc only to be replaced by an unhelpful one. I'm going thru something similar myself right now. For years I had a wonderful PCP/GP but he retired several years ago. The doc who replaced him didn't exactly inspire confidence but I decided to give her a chance. After ignoring my thyroid situation til it became critical recently (am now with a good endo and on the right path). But it didn't have to come to this level. I also have some other medical problems that I've lately discovered she could have paid more attention to. So am now looking for a new PCP. This whole situation has me down right now and I'm mostly angry at myself for tolerating this treatment for so long. I usually am able to really stand up for myself but the things she ignored weren't that critical and I was busy focusing on my a fib tx. Once that was under control and going smoothly I began to look at other situations. Anyway sometimes I just get tired of having to spend so much time advocating for myself-like pulling shark's teeth. I just wish doctors would do their job. (Magical thinking!) Sorry to be so negative today. Things aren't helped by my living situation. I live in a senior living building- beautiful and upscale but I hate it. We are treated like children who can't do anything on our own. This is not a nursing home it's retirement living.IMO I have all my faculties including more than some of the staff. Looking around for another place to live but undecided. I don't even really like Atlanta-too big, too busy, too crime-ridden. I have advice for seniors: 1) Stay in your own home as long as you can and 2) it's better to live in an efficiency independently that in a castle where other residents and staff are always watching you and telling you what you should do because they think they know best; and 3) independence is everything when we are older. To me well-meaning people who want to limit it in order for you to be taken care of by their standards is not quality of life to me. I hate it here-lots of gossipy old women, bossy staff, and the feeling I'm living in a gilded cage. Thanks for listening. irina Sorry about such a 'downer post.'

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Typical stupid stupid NHS refusing to face the fact that t3 is the active hormone and the only way to tell whats going on

If you have Central or Tertiary Hypothyroid they have to do it

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Print off both Dr Tofts latest response

And the brilliant piece by Dr Midgeley

Both are on forum somewhere ...try a search

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Many of the replies to this (and many other posts) are knocking GPs as incompetent, deskilled or just plain uncaring. But give them a little sympathy. My GP told me she isn't allowed to request a T3 test. She is barred by protocol (whatever that means). I suspect the reason is the exorbitant price charged for T3 by the only drug company making it in the UK. Rather than charge the drug company with fraud for increasing the price out of all proportion to the manufacturing cost, or seeking other worldwide sources for it, the Dept of Health finds it easier just to encourage GPs (and consultant endocrinologists too) to bury their heads in the sand and aviod finding the problem, on the bogus grounds of cost. I fear the only solution ultimately will be to go privately and source your own T3 from foreign sources.

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What you're saying is right. But, under those circumstances, the GP should not be trying to reduce the dose. They should know that they don't have all the evidence to make a decision. The fact that they don't know that they don't have all the relevant facts to make a decision shows that they are incompetent and don't have their patients interests at heart. This is what they're paid for. Why shouldn't we insist they do their jobs and criticise them when they don't?

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Thank you Greygoose

I agree with you, I mean, this female GP had the attitude " don't you dare contradict me" even to the point of leaving me a voicemail message to drive home the messages I was not going to contradict her"

I can see I am going to have to " grow a pair" and stand my ground and defend myself, when I think of the very negative impact this condition has had and is having on my quality of life.

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Well, you certainly have to stand up for yourself, anyway. :) It really is time doctors stopped behaving like gods!

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I agree greygoose. If they don’t have the evidence and can’t get the evidence they need to refer on to someone who can help the patient. They are supposed to listen to their patients.

I was put onto T3 without T3 ever being tested as GP couldn’t get the test done. Once taking T3 it’s possible to get test done.

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It's a rediculous situation.

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Thank you geoffharry

I had GP tell me they don't do blood tests for T3, just because NHS refuse to pay over the top for the drug shouldn't mean that they shouldn't also refuse to do the BLOOD test for T3, or does that cost a fortune as well.

Hands tied or not I find there is no excuse for the attitude of some GPs towards Hashimoto/thyroid sufferers.

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I think someone here discovered that a free T3 test was about 95p.

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Sadly geoffharry many GPs are unfortunately behaving in incompetent deskilled and uncaring manners to thyroid patients.

Private sourcing of T3 is not a solution for those who do not have opportunity and financial resources to do so. Remember, when you self source, you will need it for life, many of us will not have pensions large enough to maintain this through the years.

Hypothyroidism is a condition for which a prescription exemption certificate is provided, so how can it be that the nhs is not providing us with our essential medication?

The nhs have made some bad decisions, but GPs are professionals, trained at the tax payers expense, who should be protecting us and supporting us to get essential treatment. While working, we are even paying National Insurance payments as well as financing private endo appointments,T3 tests and T3. It isn’t good enough, and it isn’t fair!

Sorry, but I don’t feel any sympathy towards GPs. My sympathy is for the numerous thyroid patients whose lives are blighted by Thyroid conditions and can get no professional advice or financial support to get essential treatment.

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Hi again, I couldn't agree with you more and I have to say I believe it also has to do with a bad attitude towards women as it seems women are more inclined to suffer with thyroid issues than men.

I have read a document somewhere, I forget where, sorry just remembered it was in my own medical records( I had accessed them) where it was stated " I'm not suprised she has a thyroid problem, given her past history", I'm still waiting to hear from them an explanation as to what this " past history" is suppose to be that would effect a persons thyroid I.e. I don't have history of mental illness or treatment for such neither do I have history of illness. I have been healthy till I developed hashimotos after severe bout of throat infections.

I am convinced the medical profession in the NHS think they have a right to say whatever they like about you and put it on record where it stays to follow you wherever you go, and it is those notes that determine how your GP perceive you from then on.

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I just gave a loud whoop to your answer. Yes our taxes are paying their salaries. My gp refused once to do t3 test and i caused such a stink and refused to leave his office till he phoned the lab and told them to retest the sample, never had a problem getting t3 done twice a year ever since.

It is my understanding of fund holding gp surgeries that they are given a very large sum beginning of each year as well as their salary. It is up to gp surgery how they spend that money or if they keep it as an end of year bonus. It is worth asking, is your surgery fund holding, if they are, every test, referral, out patient service etc comes off this large sum reducing what they consider 'their' money not that it is for the patients....makes me angry

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Hi endomad - I have a different problem where I live. My GP requests T3 blood test.....but hospital lab refuses.....saying it is against guidelines. They only do the test if your T4 is slightly over range and/ or TSH is, by their standard , low. It infuriates me. !!

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tbh that is just excuses, it can be done if gp insists as his surgery are paying for it. If he puts you are taking t3 they will have to do it. The gp pays the lab for the service. Put a formal letter in writing and say it has to go on your medical records that the lab is refusing and name the lab head/manager who is over riding your gp but lab mngr is not your medical advisor. Once it is on your records that why put the cat among the pigeons, i will bet they will do it then x

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Good thinking endomad ....I may just have to try that. Maybe everybody else should do the same. Thank you.

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I did I put everything in writing I named names all on my records. I do a follow up email to every appt with my understanding of what was agreed. I put all test requests in writing and why I want them, I record all appts on my phone after a very bad endo appt who said even tho my thyroid removed she didn't think I needed any thyroid replacement and as I was obese my seriously low cortisol can't be as bad as it looks !!! I'm not joking wish I had recoded that appt as I took her all the way to the ombudsman.

Because everything is in writing it also helped me get my t3 reinstated on NHS after 10 months they didn't have a leg to stand on. My Dr records were quite poor but my recorded info is correct.

Every unreplied letter gets a follow up saying they haven't replied and I again ask for written confirmation. I spent 6 years being polite and messed about, now I am a bitch and I bet it says that on my notes. I learned that we have to be forceful as we are responsible for our health, the drs etc dont know enough and we are just a commodity to them. I say that from experience after doing 2 years of thyroid talks to final year med students.

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My GP surgery know I'm a bitch, and forceful now. I got messed about for decades whilst I was being polite and ladylike. Now I go in armed with my info, print outs etc. I managed to keep my T3 prescription, albeit from an NHS endo and not GP surgery, by knowing my rights, knowing what the BMA et al had stated. It's extremely tough on the brain though particularly when not optimally medicated. We should not be having to do this; these GPs are not working or researching hard enough for their salaries.

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If you can please have your FT3 tested also the vitamins and minerals as suggested,

then post the results on here. You can also source NDT online too. I take NDT and I am

well and have no thyroid I am not overweight either. I never bother to go to the doctors but just treat myself from the once a year private blood test and the answers received on here.

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thank you Bunnyjean

I may have to go down that road and source my own treatment in future

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Get your own blood test done, that includes FT3!

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Rather than reduce your dosage from 100, you could tell your GP you will TRY skippng it one day per week. That would give you a dose of 600mcg/wk divided by 7 days = a dose of 85.7 mcg. daily. Some endos prescribe it like this to keep bloodwork in range. It also keeps your own thyroid working a bit more and producing some TSH on the off day. But if you start feeling exhausted all the time, then it won't work and you're undermedicated.

I skipped one day every week when I was on 112 mcg. levo, otherwise my TSH went below .1. I felt fine on the off day. But if I took a lower amount every day, like 88 or 100, I felt lousy.

Most people (somewhat depending on size) don't feel good on less than 100 mcg. levo per day, I hear, with 112 mcg being a dose that many people feel good on.

As I got older I found it helpful to add natural dessicated thyroid hormone with T3. I now feel good on 50 mcg. levo per day and .30 mcg Armour natural thyroid. One of each pill taken daily in a.m. This is about equal to 100 mcg. levo based on conversion charts.

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Thanks Gates

I have tweak my 100gm dosage most days, I'm going to make sure I fo so when I'm due my next blood test as there is no way I could survive on a lower dosage, it has been tried before when I was lowered to 75mg per day, I simply couldn't function and my brain went gaga.

I actually dread going anywehere near my surgery but have to as I cannot afford to go private, it is a horrible catch ,22 situation to be in.

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100 mcg. is a very reasonable dose. These docs rely too much on TSH. It's fine to keep an eye on TSH for the first year or even two while the person is adjusting to thyroid hormone and still has quite a bit of their own production going on. But over time that lessens, and I hear most people only do well on total replacement. It's too bad there are so many uninformed M.D.'s out there who have never experienced it themselves.

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Some lines from both the Hippocratic Oath and the GMC's "Good Medical Practice" ........

en.wikipedia.org/wiki/Hippo...

“I will remember that I do not treat a fever chart, a cancerous growth, but a sick human being, whose illness may affect the person's family and economic stability. My responsibility includes these related problems, if I am to care adequately for the sick.”

“I will prevent disease whenever I can, for prevention is preferable to cure.”

GMC – Good Medical Practice

thyroiduk.org/tuk/NHS_Infor...

Good medical practice describes what it means to be a good doctor.

It says that as a good doctor you will:

•make the care of your patient your first concern

•be competent and keep your professional knowledge and skills up to date

•take prompt action if you think patient safety is being compromised

•establish and maintain good partnerships with your patients and colleagues

•maintain trust in you and the profession by being open, honest and acting with integrity.

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Thank you Marigold22

It really hits home when you actually see it in writing, pity some medical professions forget it all, it seems.

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