I have an under active thyroid - hypothyroid & have been so for about 22 years now. I was started on 25mcg then moved up yo 50mcg then 75mcg & 100mcg & now I am on 100mcg &125 mcg on alternate days. 100mcg I am told is too low &125mcg is too high & I have been on these for roughly 4 years to date. My GP does to monitor me as a matter of course. I have to ask for tests when my symptoms start playing up but I am always told my readings are fine even though the symptoms are visible. When I query the symptoms I am told they must be due to other reasons but with no further explanations. I do my best to keep to healthy eating with lots of Seaweed, Iodine rich foods, exercise, lots of volunteering to keep active & putting smiles on other people's faces thereby getting lots of smiles too. I have bad days when I just don't want to get out of bed, feel tired, hair all over my pillow, etc but GP says all is fine. I do listen to him as what is the alternative? I am almost 70 years old so feel I have coped Okeyish under the circumstances!!!
100 mcg &125 mcg On Alternate Days: I have an... - Thyroid UK
Why are they saying that 125mcg is too high for you? Is this based on your blood test results? That is very typical, I believe thousands of patients are receiving similar 'treatment'. What were your latest test results? If they are not listening to your symptoms, have they at least offered you a more detailed thyroid test (not just TSH) ?
Hi First always ask the receptionist for a print out of all blood tests + ranges, all vary.Our blood results are not always what the GP says are OK. Make sure you always have TSH, T4 and Free T3 tested, may be you now need T3 together with T4, If T4 and Tsh high in range, FT 3 on the low side ,in range , then you probably do need the T3 too. It can take all the difference to all symptoms. On T3 you need to take it split into 2, about 12 hours apart( tiny tabs).Then retested 3 tests after 4 to 6 weeks to check levels or adjust.Normally when stable and oK GP tests a minimum of one a year.
Make sure you have also had Vit D test, hormonal, if low corrected calcium before treating, then retest both in 3 months. Glucose,diabetes is hormonal and autoimmune with similar symptoms of thyroid disease to begin with, must always be tested,iron/Ferritin common to be deficient, B12 and Foliates well in range, autoimmune, hormonal. These tests are repeated annually.
I hope that helps. Thyroid disease normally does get worse with age.
Not sure if you know but to reply to post, so that we know , click on "Reply to this" under that post.
Hi, My GP lowered my dose from 125mg per day to 100mg and 125mg alternate days, a year a go. Due to the new 'guidelines! I was then working and I could tell the difference immediately between the 2 days. I tried for 3 months and then saw my GP and just said that my quality of life was so much worse on the 100mg days. I was very lucky that my GP continued to prescribe sufficient for me to revert to 125mg. I also have suffered for over 20 years, but count myself lucky at having a good medical practice.
I have asked for a letter of referral to Dr S so hopefully will get that next week as I find the latest symptom of breathlessness the last straw, I hate using an inhaler prescribed after a vey severe chest in fection
Strange my GP recently reduced my 125mg medication to 100mg and 125 alternate days. I am monitoring my feelings. What intrigued me was the words "due to the new guidelines". Can you tell me what you mean by this please meki?
Hi There, I might have been reading my own profile.... all that you have experienced & do is a carbon copy ...except Im 75, Im not happy with the alternating days, would prefer to revert to the higher dose permanently but if you disobey your doctor it will surely show up in your next blood test.
Also I admit to being a little scared of argueing with doctors....wrong age I guess ....
It makes me sad to think of older people being scared of doctors. It is our age (I'm 72) We have reasons of course, we used to respect doctors when they were real clinicians and had to actually diagnose what was wrong with us, we trusted and thought of them as very special people, in those days they were. Nowadays they are "Tick Box" doctors and allow some lab technician, who has never set eyes on us, decide if we are ill or not. Those lab technicians know nothing about the symptoms that go with our blood results and probably don't care either. Not their fault as they are doing their job, it's the doctor who isn't.
Don't be scared Sam, do your homework with books and places like this wonderful site. Be prepared to be able to ask questions in a knowledgeable way when you know in your heart that what you are being told is rubbish.
You and I survived WW11 ! We should certainly be able to sort out a pip squeak of a doctor You can do it!
I have to say I changed my surgery because of bad doctors and now have a lovely one who listens to me and works with me...probably scared the **** out of him!
I find it rather difficult to be assertive with my lady doc as she is actualy very sweet, just doesent know enough about thyroid problem, although she tells me her mum is hypo...it is difficult to know which to blame for the aches & pains plus memory loss.....is it mostly the aging process....just gonna listen to my old body a bit more, and do what I think best. I didn't mean that I was actualy scared of her, just like you I was brought up to respect doctors and people who studied hard to achieve....me I was a hairdresser....piece of cake in comparison
If you average out the doses, there is a LARGE difference between 125mcg/day and alternating (I've been there...) hence why you feel crappy again.
125 = 125/day over a month
100/125 = ~113mcg/day over a month
100/125/125 cycled = ~117mcg/day over a month
100/125/125/125 cycled = ~118mcg/day over a month
I felt 200times better on 125 daily but my T4 went up very high - I was alraedy borderline too high anyway and it only went up to 27 so 6 above normal; (strangely my T3 went up too from rock bottom) but because of this 'spike' I was told to get off it immediately and go back to my old dose. I persuaded them to let me try 100/12/125 and again after 2 weeks of feeling like crap on the old dose. I had a spike in T4 BUT after 3 weeks my T4 was actually LOWER than it had been on 100/125 and T3 higher. I think if I'd been allowed to continue 125daily the same might have happened.
I've recently been put onto alternating dosages (mine is a higher dose tho; 225mcg and 200mcg on alternate days). Me and my GP came to this compromise cos she said the blood test showed I needed a lower dose, but my Endo said not to touch it! 200 left me almost comatose with a previous GP and the Endo tore a strip off of him! I've just had bloods done to see how that's working, but I've been feeling pants so I guessing it isn't working too well!! Definitely don't take no for an answer from your doctor - if you're not happy, make sure they listen to you!!
Afterthought - it's your right to request a referral to see an Endocrinologist at the hospital. A GP is all well and good, but they only know a little about a lot of things, whereas the Endo knows a lot about Thyroid disease
Hi My doctor put me on 125 mcg every day apart from Mondays and Fridays when I take 150mcg. It works well for me. I don't experience major hair loss or feel I can't get out of bed in the morning, although there are days when I do feel more tired than others depending on what I'm doing that day or how much sleep I've had. I'm 50 yrs old and a lot of my symptoms are typical for my age as I speak to friends of the same age who have no thyroid problems. I think it's important to study what others are experiencing at that age before blaming everything on the thyroid or it's treatment I'm not saying that there are no problems with it because I've experienced them myself and still do, especially the aching muscles, joints and the short memory. I just think that we and our GPs need to look at the over all picture. I guess I'm lucky because my GP is very up on these things and listens and acknowledges that anything is possible.
I have had an underactive thyroid for nearly 20 years, I took thyroxine for the first 7 years and had similar problems GP's just increasing the dose. I was finding that the increases just didnt make a difference. I also controled my diet and made sure I was eating healthy foods and took plenty of exercise. However I chose alternative medcines with a fully qualified chinese herbalist who had also qualified in western medicine. She got me back on track within a year by drinking herbal teas made specialy for me dependant on my condition and symptons at the time and also eventualy with acupuncture. For the last 4 years I have just controlled it with acupuncture (2-3 sessions 1 every 6 months) and feel absolutely great I am coming up to 55 years of age and I find I am full of energy to carry out my fulltime work, ski, swim, cycle just about every day. Its not for everyone alternative medcine but its worth a shot.
Hi maminaelsie, I'm so sorry to hear you're not doing well. But, you know what, all that iodine might be part of the problem. Why did you start taking kelp? Were you diagnosed iodine deficient? If not, taking extra iodine can be a very bad idea.
We know that iodine is necessary to make thyroid hormone. T4 has 4 molecules of iodine. And you are taking 100/125 mcg of T4 a day. So what happens to that iodine in the thyroid hormone? When T4 is converted to T3, one molecule of iodine is released into the blood stream and is taken back to the thyroid. When T3 is converted to T2, same thing happens. When T2 is converted to T1, same again. So you are getting lots of iodine in that way. And then you are taking extra on top? That makes for an awful lot of iodine. And you only need a tiny amount in your whole life because it is continually recycled in the body in that way.
So what do you think your thyroid is going to do with all that iodine? Obviously, your thyroid is failing and not making enough hormone for your needs, or else you wouldn't be taking thyroid hormone replacement. That means that is wasn't able to handle the amount of iodine it naturally had, without the extra. Giving it extra building materials is not going to make it well again, it is just going to stress it and, eventually make it worse. Too much iodine is as bad - if not worse - than too little. Why not give it up for a while and see if you feel any better?
Agree with skibumhb,about acupuncture. I had an excellent therapist & had the treatment to reduce sweats & flushes. It worked in the end. Sometime later I discovered why they had got soooooo bad --- thyroid medication!!! Can't take T4 at all, trialled T3 & am have to come off that too for a while at least because of nasty dise effects are raising their ugly heads again inc sweating & flushing. Regrettably one of the side effects of T3 is an intolerance to excrcise which I had on T4 but it got worse. It is also a strong sign/symptom of adrenal fatigue. So suggest that adrenals should be be checked. Google Dr Wilson adrenal fatigue the 21st century syndrome. Lots of tests listed that you can do AND a lengthy questionnaire. They cost nothing except, of course, a saliva test. Good luck.
If our health felt normal whilst on thyroid gland hormone replacements, there would be no need as forums such as this as we would be busy getting on with our lives/families/work. There are now over 8,500 members!!!
If you are not well on levothyroxine, they can add some T3 to a reduced T4.
They should be able to prescribe T3 alone, any of the natural dessicated thyroid hormones and let the patient tell them when they feel well. If the patient took a bit too much, it is easy to address by either missing the next day's dose or reducing it.
These are some links which will give you information. We have to learn and read unfortunately in order to get better. Is there any other auto-immune disease that has the same problem?
Synthroid is the USA equivalent of levothyroxine.
This is an extract from the next link
There are two potential sources I know of for people feeling awful when they are on T4-replacement. One source is the extremely low dosage that doctors typically prescribe nowadays. A low dose of T4 can effectively reduce TSH secretion. The lower TSH can in turn lower the thyroid gland’s output of thyroid hormone. At the same time, low-dose T4 may not compensate for the thyroid gland’s reduced output of thyroid hormone. The patient then has too little thyroid hormone to properly regulate the metabolism of most of her body’s tissues. She then ends up with abnormally low metabolism and troubling hypothyroid symptoms. I’ve written about this before on drlowe.com.
The second possible reason for your bad reaction to Synthroid is that T4-replacement simply won’t work for you. It doesn’t work for many hypothyroid patients. In a recent study in the United Kingdom, for example, T4-replacement left 50% of patient suffering from hypothyroid symptoms (Saravanan, P., Chau, W.F., Roberts, N., et al.: Psychological well-being in patients on ‘adequate doses of L-thyroxine: results of a large, controlled community-based questionnaire study. Clin. Endocrinol. (Oxf.), 57(5):577-585, 2002.) Unfortunately, through faulty reasoning, these researchers concluded that a much smaller percentage of patients suffered from symptoms despite being on T4-replacement. They are mistaken about the percentage. The evidence is overwhelming that T4-replacement is the lousiest approach to thyroid hormone therapy. I’ve documented the widespread failures of the approach in two critiques:
An extract from Dr S
A World Thyroid Register has been formed to address the parlous situation of patients who are hypothyroid and have yet not been diagnosed and indeed patients who are being managed with an unacceptably low level of thyroid replacement. The situation has significantly worsened in the last one year pursuant to pronouncements in the United Kingdom from the Royal College of Physicians and the Royal College of General Practitioners who inter alia have suggested that patients should not be diagnosed with hypothyroidism if the TSH is <10.0 and moreover that Armour Thyroid is a 'bad' preparation because the proportions of T4/T3 may not reflect the human proportions while contemporaneously suggesting prescription of T4 alone; this makes no sense at all.
A year ago my doc changed my prescrip of Levo too 100 and 75 alternate days, I have been Hoshimotos diagnosed since 99. My father and sister have same condition.
I was on 125 and Im 56 now
It has been awful not having the full dose.
I will be asking for a copy of my last two blood tests so I can be sure im not being duped
Why wont they take notice of how we are affected by cutting doses? x
ps. I love reading everyones experiences too x
As a follow up, my GP said we do not have half doses in the UK as they have in some other countries, so while 100 mcg is too low, 125mcg is too high. The idea is to trick my body I am told. By the time my body realises that 100mcg is too low I will have taken 125mcg the next day & by the time my body starts to feel that 125mcg is too high I will have taken 100mcg the following day & so on! Hummmmmm Why don't the Pharmaceutical companies produce smaller doses as there are lots of people on alternate doses if the GPs are right? . I am very happy that I joined HealthUnlocked as I am gradually realising that: I am not alone & I am learning daily about my situation from reading about other people's experiences, problems & the sharing that is going on. I now have another lovely family- my co-thyroid sufferers. Thanks every member & contributor!
someone in the NHS needs to read this forum.... they would learn a lot!
I was diagnosed Hypothyroid after the birth of my first child when I was 25, although I believe that the onset was at age 18.
I am now 71.
I was originally on ELTROXIN until the late seventies. Throughout those years I was up and down like a yo yo, rarely stable and suffering from all the symptoms experienced and described by others on this forum. Eventually I took things into my own hands, saw Dr Skinner, went on to ARMOUR, was refused treatment by NHS Endo as a result and continued to suffer.
At 60 I decided to go back to NHS - same Endo - and also have a very supportive GP who herself has undergone Thyroid surgery as a young woman.
During the last year, in consultation with my Endo, I have now settled on 100 + 25 LEVO one day and 100 the following day plus the extra 25 split in two for Saturday and Sunday. This means that I am taking 800 mc per week.
I can report that both my tests and more importantly MY BODY now show and feel as normal as I have ever felt in fifty years.
I also have VITILIGO since age 6/7 yrs and ALOPECIA TOTALIS, very little body hair throughout adulthood and total loss of ALL hair ten years ago.
All of these Auto Immune conditions are chronic. And for some, extremely difficult to manage and control. Knowledge and practice has improved massively throughout recent decades.
Patient participation, used intelligently, and with sensitivity, can and does improve the situation for all concerned.
In this world of expectation of 'perfection', some of us have to accept that our bodies are not perfect, and never will be !
Hi! how are your numbers with this regimen. TSH- T4
AND HOW DO YOU TAKE IT?
IF I TAKE 112 MY T4 IS LOW AND TSH GOES UP.
IF I TAKE 125 MY T4 GOES UP AND TSH GOES DOWN
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