So after my successful win with the GP regarding reducing my levo based on my TSH result where she agreed I was right that this can’t be done and I should stay on 125mcg instead of reducing to 100mcg
I have just received a letter from that same GP who says she was left confused after our conversation and has since spoke to an Endo who has advised that they should be basing my levo dose on my TSH result and not on T3/T4. As such she said they are over treating me and I need to reduce as it is not good for my bone health having a TSH so low even tho my t4 and t3 were in range I can’t believe it
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Wilky21
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Suggest you get FULL Thyroid and vitamin testing NOW before being forced to reduce
Most likely endocrinologist is diabetes specialist
For full Thyroid evaluation you need TSH, FT4 and FT3 tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common,
Ask GP to test vitamin levels
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose 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)
Is this how you did your tests?
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
guidelines on dose levothyroxine by weight might help with your argument ...depending on how much you weigh
Some people need higher dose than guidelines due to malabsorption...rare to need less than guidelines
Even if we don’t start on full replacement dose, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until on full replacement dose
Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.
Traditionally we have tended to start patients on a low dose of levothyroxine and titrate it up over a period of months. RCT evidence suggests that for the majority of patients this is not necessary and may waste resources.
For patients aged >60y or with ischaemic heart disease, start levothyroxine at 25–50μg daily and titrate up every 3 to 6 weeks as tolerated.
For ALL other patients start at full replacement dose. For most this will equate to 1.6 μg/kg/day (approximately 100μg for a 60kg woman and 125μg for a 75kg man).
If you are starting treatment for subclinical hypothyroidism, this article advises starting at a dose close to the full treatment dose on the basis that it is difficult to assess symptom response unless a therapeutic dose has been trialled.
A small Dutch double-blind cross-over study (ArchIntMed 2010;170:1996) demonstrated that night time rather than morning dosing improved TSH suppression and free T4 measurements, but made no difference to subjective wellbeing. It is reasonable to take levothyroxine at night rather than in the morning, especially for individuals who do not eat late at night.
I take b complex. B 12. Vit a, c, e, selenium glucosamine calcium vit d and k spray and magnesium. I was intending getting them redone end of August. I don’t have coeliac. Already had that done. I don’t eat a lot of . Lactose free milk Gp retested my folate and that is now up again. I dont know what else to do
So you need to ensure that calcium and magnesium are four hours away from levothyroxine
Strictly gluten free diet helps thousands....the only way to know if that includes you is to try it. It does need to be absolutely strictly gluten free to be effective.
Essential to stop vitamin B complex a week before any blood tests
If you suspect you are lactose intolerant you would need lactose free levothyroxine...
Teva or Aristo
Recommend you get full testing BEFORE changing dose
these may help you make you own mind up about the risks......... everything has risks...... it's all relative .
Just because your GP has been 'leant on', it doesn't mean she was wrong to agree with you in the previous appointment, or that the endo she has spoken to is right.
It most likely means she didn't have the confidence to argue with a dinosour.
The type of doctor I'm linking you to is a 'real' expert and its no wonder he cannot take on any new patients (he's in the USA). This is what he states and what many of our endocrinologists knew before the 'guidelines' were introduced. Amongst the knowledgeable doctors were Dr Skinner and Dr Peatfield (both now deceased):-
"They are actually taught to ignore the patient's signs and symptoms and all the complexities of the endocrine system. They practice "Reference Range Endocrinology"; accepting any hormone level anywhere within the laboratory's reference range as "normal", meaning "no disease". They fail to understand that population ranges do not define what is optimal for our species, or for any individual. The laboratory ranges include 95% of a group of "apparently healthy" adults who were not screened for symptoms. They include almost everyone! Worse, physicians ignore a person's actual thyroid hormone levels and their symptoms and rely almost entirely on the wrong test, the TSH, to diagnose and treat hypothyroidism. This illogical TSH-T4 thyroidology makes them incapable of diagnosing or properly treating hypothyroidism. It has also corrupted the laboratory ranges for free T4 and free T3. Laboratories include physician-ordered
tests from hospital and clinic patients in their ranges--as long as the TSH was normal. Laboratories are reporting hypothyroid patient ranges!
Hey there - have to say I'm sorry it didn't last but I'm not surprised :
This is why I 'm now self medicating :
I am now well enough to go back to the doctor and start Round 3/4 in trying to get better thyroid treatment for myself, I am living proof, of my own recovery and health.
However I know this will be futile, and I'll be the one on the mat, floored by a system heavily weighted against my being well, and taking NDT, and having a suppressed TSH and being relatively happy with " my lot " .
I'm not 100% but so much better than the NHS treatment I have received throughout my diagnosis of Graves, treatment with RAI, the resultant TED and hypothyroidism and lingering Graves that I now live with and manage myself.
The NHS employees follow the guidelines in place as that it is what they are paid to do, it's a job, and you are an appointment slot for 5/10 minutes, if you're lucky.
They recite dogma from a computer screen as actors reading a script, and with enough practice probably convince themselves as to the content. These rules and regulations are not fit for purpose, and I ask myself if I wish to jeopardise my health once again, as the stress of challenging the system is substantial and exacerbates my symptoms.
So, the answer is obvious, so I help on here, as this is why this forum and Thyroid uk exist as if " all was well with the system " none of us would be on here looking for answers and help and confirmation that we not all going mad !!!
P.S. I guess if you follow through my school of thought, I now don't need to see a doctor for my thyroid issues and have no need of further prescriptions or additional labelling for chronic fatigue, depression, stomach and gut issues, etc., and no need and keep going round and around various hospital departments getting nowhere.
True I may now not be having to pay for my prescriptions, as I'm now hypothyroid, whooppee, but Big Pharma gets paid irrespective.
Why would I need additional prescriptions, if the first diagnosis was treated properly, and why are we kept under medicated rather than optimally medicated, it certainly isn't for our own benefit, is it.
I think the NHS is in the process of becoming a business - it's already splintered and a two tier system and It is not the organisation that it once was, when we all grew up loving, respecting, and believing that it was " there for us ' in our time of need.
Yes, but that's the elephant in the room - can you see any Government being up front and spoiling the illusion - we are a minority of people in the overall scheme of things.
I don't have a pension paying a big enough whack to cover private medical costs :
Do I get a free ride for having paid in for over 40 years. or a refund ?
My opinion is totally biased as my only health issues are thyroid related :
Before blood tests were introduced along with levothyroxine, doctors used to know all symptoms and usually shook your hand when you came into his office as you sat down. This, in turn, would be helpful in diagnosing patient, i.e. is hand cold or clammy, plus all other signs or symptoms and we were given a trial of NDT to see if our health improved. If so we continued with NDT.
That's so true - and you have reminded me of my initial doctor's appointment.
I was with insomnia, dry gritty eyes and exhaustion and he looked at my bottom inner eye lids and thought my suggestion of anemia wasn't correct and said he would run some blood tests.
The following day he phoned at work and said I must come back in to see him, same day.
He asked me to hold my hands out, and then held them, and I thought, Goodness Gracious what's this all about, and then he mentioned Graves and said not to worry !!
Yes, he found a fine tremor in my middle finger and so happy as this physical display of symptoms, but after the blood test diagnosis, as initially, I think he was ready to brush me off, as was my usual experience of doctor's appointments.
That happened to me. After several years of different illnesses and tests and nothing I changed my GP. He shook my hand and asked me to hold both my hands straight out and there was a tremor in both and he looked at me and said I know what’s wrong with you. Sadly he has now retired hence the confusion in my thyroid levels now
How interesting - yes wish I was in that time wrap of doctors looking for and checking for physical symptoms rather than looking at a computer and just numbers.
They have replaced knowledge with blood test results alone and it seems they only take notice of the TSH and maybe T4. They do not take a Full Thyroid Check which is TSH, T4, T3, Free T4, Free T3 and thyroid antibodies. Neither do they ensure that TSH is around 1 or lower with both FT4 and FT3 in the upper part of the ranges.
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