I have been on levothyroxine since the late 80's and am now having heart problems and diabetes because my metabolism is so slow. Over the last10 years GPs and endos have repeatedly reduced my dosage from 125mcg to 100because of my high TSH. As this turns me into a Cretin (a 19th century term for a person who lacks thyroid hormone, otherwise known as an idiot) the dose is always quickly reversed, but each time it takes a toll on my general health.
Now I've found a source of T3 and want to start self-medicating, as all doctors are refusing to prescribe it for legal reasons. I intend to start at the lowest dose and work upwards slowly until I reach the right level. So I'm looking for somebody who will (examine me and) prescribe. Do you know anyone who could help me? By the way I had a partial thyroidectomy in 1973 by a doctor who had never done the operation before. As a result I've been without any thyroid or parathyroid glands for the last 45 years. I'm very pleased to have discovered and joined your website in the last two years. It was a very different world before it appeared. Keep on keeping on!
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Over the last10 years GPs and endos have repeatedly reduced my dosage from 125mcg to 100because of my high TSH
If your dose is being reduced because of high TSH then your doctors don't know what they're doing, and unfortunately you may not understand either. A high TSH indicates you are becoming more hypothyroid, so Levo is increased, not reduced. The aim of a treated hypo patient generally is for TSH to be 1 or below or wherever it needs to be for FT4 and FT3 to be in the upper part of their respective reference ranges when on Levo if that is where you feel well.
How do you know you need T3? T3 is only indicated when there is poor conversion of T4 to T3, and this would be suggested by a high FT4 result and a low FT3 result. Have you had these tests done? If you take T3 when you don't need it you open yourself up to further health problems, primarily with the heart.
If you would like, members of the forum can look at your test results and suggest where they may be a problem.
To get a full picture we need to see results and reference ranges (because ranges vary from lab to lab) for
TSH
FT4
FT3
Thyroid antibodies - TPO and TG
Vit D
B12
Folate
Ferritin
The vitamin results are necessary because thyroid hormone can't work unless nutrient levels are optimal.
So before you even consider going down the T3 route and paying a shed load of money to see a private doctor, please post results for all those tests so that members can help you.
If you haven't had them all done, and your doctor wont do them all (your GP wont be able to get FT3 done, may do TPO antibodies but unlikely to be able to do TG antibodies, and may or may not do the nutrient tests), then consider doing a private home test with one of our recommended labs either by fingerprick or venous blood draw if you prefer.
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You're right about my TSH - I just typed in the wrong word! I am waiting for a Medichecks blood test with all the features you mentioned and will let you know when I have the results, which may be after Christmas. Thanks for your valuable advice.
In case you don't know, when you do your test then do it as early as possible in the morning, no later than 9am, take your last dose of Levo 24 hours before you do the test then take that day's after the test. Also fast overnight - have your evening meal/supper the night before as normal then no food until after the blood draw, also no coffee, tea, etc, just water before doing the test.
"reduced my dosage from 125mcg to 100 because of my high TSH" - do you mean because of your LOW TSH, rather than high? A high TSH would be reason to raise your dose rather than reduce it.
There is no legal reason why an NHS Dr cannot prescribe T3, if you are being told there is, you're being told porkies. A GP is an independent contractor to the NHS, so has to work within the terms of his contract, but that does not "legally" include what he can and can't prescribe other than in general terms. NICE Guidelines for instance are that in general, Drs should first prescribe licensed on-label drugs before turning to off-label or unlicensed drugs, but even that is a guideline only, not a rule. A GP is regulated by his relevant professional bodies, and law, and presumably to a degree, by his insurers, not by the CCG; and if he thinks a patient needs T3 and will benefit from it, he is free to prescribe it; whether that gets up the nose of his CCG or not. Unfortunately some GPs (such as mine) find it easier to bow to CCG pressure to withdraw it or refuse to instigate it, but it isn't a legal requirement to do so. If I look at national prescribing data for my own CCG, I can see that even though my T3 was withdrawn on the alleged say so of the CCG, there are still 40c prescriptions being given by GPs on a monthly basis.
Given the lack of understanding and antipathy about T3 and its effects as evidenced by blood test results, I'm not sure that there's a benefit in being examined and monitored by a Dr in order to take T3. Many of us who are prescribed it or who self-source, find its more useful to have private blood tests and discuss them here, than run the all too common gauntlet of "Aaargh, your TSH is life/heart/bone threateningly too low so stop the T3 right now".
Thanks for your very useful and practical advice, which is a true reflection of my experiences with GPs and endocrinologists.After many years of trying to get doctor to understand my condition I'm concluding that I am the only one who understands my problems and the only one who can solve them. However I can't find a doctor who will prescribe T3, so any help would be greatly appreciated. I have a Medichecks Thyroidcheck ULTRAVIT ready to do, but it probably won't be done till after Christmas, and I'll come back to you then.
Hi Slow Dragon, I'm in East Sussex, but have only just moved here. None of the doctors that I knew in the Midlands would prescribe T3. Is it different here? I really hope so. I've sent the email to Dionne and will let you know what happens. Thanks again.
But first you MUST get full Thyroid and vitamin testing as listed above by Seasidesusie.
All thyroid blood tests should ideally be done as early as possible in morning and fasting. Do not take Levothyroxine dose in the 24 hours prior to test, delay and take immediately after blood draw. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Come back with new post once you have results and ranges
Meanwhile read as much as possible on here, other websites, members profiles on here etc etc
If you only had partial thyroidectomy, it would be very unusual to have all four parathyroid glands removed
The partial thyroidectomy was done because I had an over-active thyroid gland during the first three months of pregnancy when I was 22. The operation took place on 10th September 1973 in Wordsley Hospital, West Midlands, when I was five-and -a-half months pregnant. It was performed by a long-serving General Surgeon whom everyone put on a pedestal. Twenty-five years later I discovered that he was doing it because he wanted to write a medical article about the first Partial Thyroidectomy on a pregnant woman, and that he had never previously done any thyroid operations. During the operation whilst cutting off too much of them, he accidentally cut off the blood supply to my two thyroid glands , and consequently destroyed them.
As my four parathyroid glands shared the same blood supply, they were also completely destroyed. As a hypOparathyroid I insist on Vitamin D tests around 2 or 3 times a year, particularly when the level of sunlight changes. If you can advise me about anything to do with parathyroid treatment I'd be very grateful, though this is not my first concern. As far as I know there are only about 280 patients with parathyroid problems in the whole of the UK. Thanks for the websites.
I'll tell you my test results, but probably after Christmas. Thanks again.
In the UK Liothyronine sodium is prescription-only, whether NHS or private prescription. (An NHS Dr can issue a private prescription if he is unable to prescribe within the NHS because of CCG pressures). That isn't the case elsewhere in the world. It is perfectly legal to purchase T3 sufficient for one's own need & use, in a country where it can be purchased over the counter.
An NHS GP is extremely unlikely to give a private prescription for T3. Though a very few will.
GP's are no longer allowed to initiate prescribing T3 on NHS
Referral must be to endocrinologist for NHS 3 month trial. But it's virtually impossible to be allowed T3 during pregnancy. Though several on here have found T3 may have helped with conception
Are you on adequate dose of Levothyroxine?
Is TSH under 1.5 and FT4 towards top of range
I see you have PCOS and Hashimoto's
Are you on strictly gluten free diet for Hashimoto's
And PCOS often responds to low sugar diet
Vitamin D at least around 80nmol- 100nmol
B12 and most importantly (for TTC ) folate towards top of range
Ferritin at least half way in range
If all this is in place and still not well, ask for referral to endocrinologist
Thyroid Uk has list of recommended thyroid specialists
New NHS England Liothyronine guidelines November 2018 clearly state on pages 8 & 12 that TSH should be under 1.5
My GP for the most part is quite empathetic and at least listens. He didn't want to refer to endo because he thinks we can manage thyroid together and for the most part I agree (!)
I have all my vitamin deficinies under control now I believe -havent checked vit D though but I have taken 1_3000 IU per day since loading doses.
Yes I was thinking if I do get pregnant I will ask for referral to endo anyway. All my thyroid tests have always shown poor t4 to T3 conversion.
I am maxed out on t4 and vitamins and still have a way to go.
I do feel generally quite good ! But could be so much better
We are awaiting my IVF results - I guess plan of action will depend on pregnancy
I will write a separate post detailing my latest results
I am controlling blood sugar's but not completely gluten free. I was last winter and can tolerate it a lot better now. My TPO antibodies have not changed in 2 years.
having read both your posts, would the endo who suggested you needed T3 be the one to monitor you ?
Yes, I've been where you are - we read of the possibility of acquiring NDT through the Nhs but there appears to be a ' blanket deafness ' and denial of the named person only prescription procedure.
Once you have your blood test results, others, more knowledgeable than me will be able to pick up your next posting.
Well done for getting this far, you're in the right place now , this site is amazing and you've
made this first step in what's going to be a longish road and a massive learning curve.
Book at bedtime to get you started ? Best Christmas present I got for myself -
Your thyroid and how to keep it healthy - I know, you don't have one, neither do I !!!!!
Not all Drs will monitor patients who out of desperation for their genuine health condition, self-source their thyroid meds, which is understandable when you think that they can't guarantee the safety of the source etc etc ...... Until you remember that they happily and persistently treat illegal/street/recreational-drug users who are the ultimate in self-sourcers, without any problem of conscience, medical science, or insurance, whatsoever.
Don't do it. I tried that, for the same reason, and synthetic T3 made me feel terrible. The solution you want is a full spectrum natural desiccated thyroid supplement. Only thing that works for some of us.
I've been thinking about that for some time. How can i go about finding out which is best, T3 or full spectrum natural dessicated thyroid? I believe I used to have this on prescription in the 'seventies. How do I compare them?
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