Ok, so the nightmare is threatening again. The prescribing consultant for T3 is buggering off to another hospital in another area and is not answering any emails from either me or his secretary as to if he will accept me as a client when he moves (if my GP refers out of area, of course) or if I will have to go privately, which is a stretch, to be truthful.
If he won't answer and my GP continues to prescribe T3 as she has been doing since this so and so was advising, how long before a blood test should I stop the T3 and sit around in drooling semi-consciousness, in order to prevent the, "AAAGHHH! Your TSH level is non-existent...we must stop medication!!" shrieks from the GP - or the next consultant, assuming they will even agree to continue to prescribe the T3?
What the leaving-mouth doesn't realise is that I have not taken the 50mcg of Levo + 10mcg T3 in the morning, plus 5mcg T3 lunchtime and 5mcg T3 afternoon as he prescribed, but 1grain of NDT at 5am, 10mcg of T3 at around 11am and 5mcg T3 around 5pm. LONG story, but suffice to say that consultation with this man, although it yielded some supportive prescribing, was like facing a Bren gun of words, like "yadayada heart attack, yadayada stroke, paralysis, crumbling bones, suppressed TSH, not on guidelines . . . " for 95% of the time with 5% interspersions of mine saying, "quality of life, suppressed TSH normal with T3, dying now, feeling so ill..." You get the drift.
And if I have to go it totally alone (currently get my own NDT, but may have to obtain Cytomel), then same question. How long before the bloods are taken should I hold off the T3? Or all the meds?
Advice gratefully received.
Written by
Schenks
To view profiles and participate in discussions please or .
The ability to reply to this post has been turned off.
20 Replies
•
This is the dilemma that we find ourselves in when no doctor will help and it's totally unreasonable - we self medicate "and die" according to them, or we pay attention to them and have no life anyway. This might be of interest to you and your GP at some point:
""Some women are told to be wary of taking thyroid medication because it can leach the calcium from bones. This assumption is now outdated. The research on people taking extremely high doses of thyroid hormone is mixed, but it is now known that thyroid pills in appropriate doses are good for your bones. Moreover, it has recently become apparent that the fairly common situation of undetected and untreated low thyroid is the cause of bone calcium depletion. Dr. Richard and Sharilee Shames
In the 1970’s and 1980’s, many faulty studies were published that led to the erroneous conclusion that TSH-suppressive dosages of thyroid hormone decrease bone mineral density in most patients. Some conventional endocrinologists wrongly extrapolated from these studies that TSH-suppressive dosages lead to osteoporosis and increased risk of bone fracture. Among our patients who have used TSH-suppressive dosages of T3-containing preparations from 1-10 years, bone densitometry has shown that their density is HIGHER than other men and women for the same age.
The finding of higher bone density among patients taking higher-end dosages of thyroid hormone suggests that under-treatment with thyroid hormone can contribute to lower bone density. The lower bone density is likely to result from patients being unable to engage in weight bearing exercise due to low motor drive and decreased metabolic capacity. Hypothyroid patients using T4 replacement dosages commonly lack the drive to engage in weight bearing exercise, indicating that replacement dosages are often tantamount to gross under-treatment. Dr. John Lowe, Boulder Colorado (119)
Optimising the serum dialysis free T4 and T3 levels in all my patients has not contributed to osteoporosis at all (on the contrary, serial DECCA scans have usually shown dramatic increases in bone density despite my never prescribing any drugs for osteoporosis but using nutritional and metabolic corrective approaches instead); and cardiac arrhythmias are taken care of by making sure there is no functional deficiency of the pertinent minerals in the appropriate fluid spaces (RBC/packed cell levels in the case of magnesium and potassium). Not doing these things, and assuming that a “normal” TSH always means normal – even optimal – thyroid hormone function, is causing vast under-diagnosis and under-treatment in millions of patients in the US and around the world. Surveys of patient satisfaction with treatment, and websites devoted to this topic, invariably show deep distrust of the adequacy of their treatment, Dr John Dommisse, Tucson, Arizona
There is no correlation except at extremes between the signs and symptoms of thyroid problems and the TSH. This is clearly stated by Dr. Anthony Toft of Edinburgh (1991). Hence why are we following a test which has no correlation with clinical presentation? The thyroidologists by consensus have decided that this test is the most useful for following treatment when in fact it is unrelated to how the patient feels. The consequences of this have been horrendous. Six years after their consensus decision Chronic Fatigue Syndrome (M.E.) and Fibromyalgia appeared. These are both hypothyroid conditions. But because their TSH was normal these patients have not been treated. The TSH needs to be scrapped and medical students taught again how to clinically recognize low thyroid conditions. Dr.David Derry, Victoria, Canada, BMJ, 1999
Blood tests are measuring the hormone level in the bloodstream. Hormones don’t perform in the bloodstream. They act on the tissue level at their target sites. For complex reasons, the amount in the bloodstream does not always reflect the amount that exists at the site where the hormone will be needed. Far better is to have a testing method that actually measures the amount of hormone at the tissue level. Some blood tests are excellent, such as a red blood count revealing anaemia, a white blood count revealing infection, or a liver function test revealing hepatitis. On the other hand, standard blood tests for adrenal, thyroid, and sex hormones are very overrated, because of the blood level-tissue level dilemma. Dr. Richard and Sharilee Shames
As to your current dilemma there may be others on here who can advise on this better than me as my daughter uses only her symptoms as guidance. She is monitored by phone by her doctor in USA, and hasn't had a TSH test in over 10 years.
Sorry, but I had to laugh at your lovely post. I am in the same position and will look forward to your replies. My new Endo considered my current doses of T4/3 to be "far to high". He then did a blood test that showed everything only a tiny bit over range, so I am supposed to be doing a small tweak on two days a week. I tried it and felt all the old symptoms returning, so have continued with my previous doses but the blood test is looming. I am faced with the same dilemma. How can I fiddle it to produce acceptable figures? I think the TSH will be my undoing. It never lies!
It's going to be interesting to find out how to tweak to keep the numpties happy! In the end, I am going to use that ancient adage as a homage to common sense. I'm going to sod-'em!
Thank you, Jane. It does strengthen my courage and resolve to read this king of refutation - if I have to go it totally alone, I shall. What I would really like is for the T3 to be prescribed - the strain on finances from being too ill to work, let alone trying to maintain the supplements and beginning to look at using Blue Horizon for private tests is not inconsiderable! Can you tell me where I can print off these references to take to the GP, please? I have just joined Thyroid UK, but I have to say, I do get bamboozled by all the info. I am trying to read Paul Robinson's book, but haven't managed to get past the chemistry yet! However, I feel less anxious with knowing that doctors are beginning to point out the errors of the ways of their profession!
Hi Steph, Some are from books (the Shames') - I bought A LOT of books when this thyroid thing raised its head - I have a shelf full! Dr. Dommisse is one of TUK's advisors, and so was the late Dr. Lowe. They have both written at length on the subject and I will have got their quotes online. The Dr. Toft (Werner and Ingbar's "The Thyroid" in 1991) referred to is one of BTA's own men so his quote should be quite acceptable to any GP. Dr. Derry was a doctor in Canada. All of the quotes are from legitimate doctors who have made their hypothyroid patients well by treating them as individuals and not as numbers in a test tube. Jane x
Thank you - although at the end it does say that lower TSH levels are ok but that suppressed TSH levels (like mine, >0.04) increases all the risk factors. Hmmm.
Do you feel well on your current dose? If you do, maybe you could tweak it ever so slightly...to bring the TSH up a little....? 2.5 mcg reduction every other day or something - NOT that I am necessarily advocating the TSH dosing thing...if you feel better with a completely suppressed TSH that should be up to you of course - in the face of the evidence, it should be up to you to make an informed choice. There is always a disclaimer - you could ask to sign one - make it in relation to your TSH to absolve the GP of any responsibility - that's always an option...
When I was on Levo my endo at the time kept my TSH suppressed all the time...none of my hypo symptoms went away at all...in fact over 5 years things got much worse. It all changed when I changed to pure T3 (at my request, well not a request actually I refused to take T4 anymore) - now the rules have changed too - suddenly they care more about the TSH thing. Its all nuts. No logic.
I know when I am optimally treated as I get palpitations fairly frequently if I am under or over dosed. At my current dose I don't have any. Zero. Zip....
But, they do what they want - they don't really listen in my experience...Maybe delay your T3 dose for over 24 hours. I am not sure I would want to do that - because I get symptoms and its unpleasant - but maybe as you are on combination treatment as I understand it (?) you could just take the Levo late the day of the draw and cut back on the T3 for a longer time...?
I am taking T3 at the moment. I am self-medicating, I've told my doctor what I'm doing and I've said I will monitor it myself. When she asked how, I said I would treat myself according to my symptoms. She already thought I was a hypochondriac and an idiot, so her opinion of me hasn't changed. But she can't stop me treating myself, and she can't force me to have blood tests. I suppose she could refuse to be my doctor, but there is no sign of her doing that - yet.
The sense of freedom from self-medicating still hasn't worn off - not having to beg any more feels amazing. Now I just get scared that the powers-that-be will make it illegal to import thryoid medication.
Blimey, you have my absolute admiration! I feel very nervous about alienating my GP - she's a good egg, mostly and she is very supportive, as far as she can be and her blinkers re: the TSH stuff is concerned. I'm going to pm you if that's ok?
I don't get my FT3 measured - they'd look at me as if I was mad! so even with a 20-22 hour withdrawal you are still below the supposed ok minimum for TSH. what on earth will you do next??
They say I have to reduce. I did that for a week. After 4 days I couldn't get off the couch so I put it back up. She is writing to the endo - I am hoping he wouldn't see my latest result as a problem, especially in view of my FT3 - I could maybe understand her logic if a) I had hyper symptoms b) my FT3 was in the upper limit of the reference range but its not....
I am going to wait to see what the endo says, delay the blood test and try and put some evidence together to support what I am saying. Fingers crossed that common sense will win the day!!
But I am not holding my breath!! Good job I still have a sense of humour!!
BTW any of you in worcestershire? Know of any meetings?
My TSH is supposed to be suppressed <0.1 post thyCa to prevent recurrence. Heart, stroke & osteoporosis risks have never been mentioned to me in relation to suppressed TSH and I doubt thyCa patients are immune to them.
It strikes me that this dosing according to TSH, FT4 and FT3 really is rubbish and leads to inconclusive and conflicting advice from medics who should know better. I felt best I've been since 2010 when I stopped meds in Nov 2013 and my TSH rose to 107.5 in Dec.
T4 monotherapy which I complied with for 2 years left me almost bedridden. T3 monotherapy was better but I still felt very unwell. T4+T3 is much better but there is still room for improvement so I shall be trialling NDT.
How I feel NOW is far more important than potential future risks which may or may not occur despite TSH being 'perfect'. I am not a Number.
I seem to remember last time I cut out the T4 for about a week before the test and the T3 for a day; T4 stays in the body so I don't think a day would be nearly enough.
I don't believe levothyroxine has much effect on me anyway, and cutting it out seemed to make little or no difference. Dropping the amount of T3, however, has an almost instant effect.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
I started a thread about this very thing the day before (I think) yesterday.Can't remember :-S
Good job I still have a sense of humour!! 
Slow Release T3 - How long to leave between intake and blood test?
Stopping T3 Cynomel - how long before suppressed TSH likely to increase?
Advice on taking T3 and Levo before a blood test
On T3 should you have blood tests for t3
Recent blood test after t3 was stopped. 
