Thank You: I am so grateful to you all for your... - Thyroid UK

Thyroid UK

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Thank You

setapart profile image
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I am so grateful to you all for your encouraging responses to my first post. The plethora of advice and information you have shared will help me improve both my vitamin levels and my chances of having my dose increased from the current 25mcg I am taking. I am already taking many of the supplements mentioned and will be adding to them after reading your recommendations. I omitted to mention in my first post that I take Warfarin daily in order to thin my blood after 3 episodes of DVT in my 40s. I was also prescribed Felodipine in recent months for high blood pressure.

After reading advice on this website, I will fast for my next blood tests in April and will delay taking my Levothyroxine that day until I've had my tests. I will make sure I see a different GP at my surgery in the hope that a more in-depth and sympathetic approach is used but if my dose is still not increased, I may have to go back to the private endochronologist I saw recently and be more specific about the thyroid levels I wish to achieve for optimum health; he was merely concerned with keeping my TSH 'in the lower half of the range' during my last visit. I am also considering undertaking private blood tests just before my NHS blood tests in April, in order to have access to the full range of thyroid tests results, rather than the minimum offered at my GP surgery.

However, the main reason I posted yesterday was for advice regarding Levothyroxine dosage. My current 25mcg is too low, said a couple of my responses, which is what I suspected. It has been extemely frustrating and disheartening trying to persuade my doctor and endochronologist to increase my dose for optimum health. I feel they were merely trying to appease me by prescribing such a small dose of Levothyroxine and see no reason to increase the dose, especially now that my TSH has improved, decreasing from 5.19 to 2.14 (0.10 - 5.00) after treatment. The fact that T4 increased from 11 to 12 and is now just inside the normal range (12 - 23) is enough for them, irrelevent of many ongoing symptoms. Can anyone give me a rough estimate of what my current dose should be, based on the above results? I need to have an idea of what to aim for. I hope to have 25mcg increases until I stabilise. I will once again be asking for an increase in my dose in order to bring my TSH down further and to increase my T4 so that it is near the top of the reference range but this has proved difficult, as the GP and endochronologist think they've done enough. This aspect of my illness has been the most challenging for me as I do not wish to come across as the 'expert patient' that most doctors dislike intensely but equally I find their dismissive attitude to my concerns difficult to cope with, feeling worthless.

I thank you all once again for the time and effort afforded me. I wish my doctor had even half the knowlege and compassion I've experienced from you all.

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setapart
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4 Replies
Fruitandnutcase profile image
Fruitandnutcase

Well done for getting this far. I found that the NHS just don’t go in for ‘fine tuning’, anywhere within, what to me is quite a broad range is good enough, regardless of how well you are feeling.

shaws profile image
shawsAdministrator

If the Endo is more concerned with " he was merely concerned with keeping my TSH 'in the lower half of the range' I think I'd avoid him altogether.

This is an excerpt from an Adviser to TUK before his accidental death. It is not to advertise Thyro-gold which he invented so that people didn't need prescription and his widow now deals with this. Far more important is what he states in the following:

" I feel especially outraged over the suffering of British patients from the recent diagnostic and treatment recommendations of the British Thyroid Association and the Royal College of Physicians. I say "especially outraged" because I fully expect that the recommendations will cause even more widespread suffering than already afflicts so many British hypothyroid patients.

As I reflect back over my years of clinical practice, I see countless faces of hypothyroid patients. Most of the patients had long suffered due to the endocrinology specialty's dictates.

"No More Begging and Pleading with Misguided Doctors:

Liberation through Self-education, and Action on Your Own Behalf"

web.archive.org/web/2010103...

He also wrote to the BTA et al before his death about their untruthful Rebuttal about NDT and he never got a response, despite three yearly reminders before his death. NDT had always been prescribed - withdrawn. T3 prescribed - now withdrawn.

setapart profile image
setapart in reply to shaws

Hi

Many thanks for sharing such a fascinating article. I think every hypothyroid patient should read this. Dr. Lowe must have been an amazing doctor. I, too, am tempted to self medicate if my 25mcg Levothyroxine dose is not increased after my next TSH test in April.

I am saddened by the amount of patients who are suffering through insufficient medication and are literally begging for the treatment they so obviously need. I could certainly identify with some of the tired and tearful patients mentioned. I hope other forum users will read this compelling article written by a compassionate and caring doct

shaws profile image
shawsAdministrator in reply to setapart

In the UK we, too, have had good and humane doctors that have their Licences removed if they did as they were taught as medical students.

They now have to follow the 'line' even if they don't agree, such as not being able to diagnose upon clinical symptoms alone but to wait till TSH is 10. Not being able to prescribe alternatives to levothyroxine if patient isn't improving. We used to get prescribed NDTs (the original replacement) which prevented people developing really awful symptoms such as myxedema coma but we seem to have gone backwards and the withdrawal of NDT was made through False Statements about it by the Professionals Organisationand, again, Dr Lowe wrote to them but they never did respond and Dr Lowe died. It seems to me that they are working for the Pharma companies in that the smaller companies that produce NDT lost lots of business and I know of one UK doctor who was pursued relentlessly because he treated patients' symptoms and without blood tests. He was called before the GMC more than once and it wasn't his patients who reported him so who did? How many doctors like Dr Lowe and Dr Skinner and Dr Peatfield lost their livelihoods? Dr Skinner - when he appeared - once again - before the GMC there were 10,000 testimonials from grateful patients whose lives 'he saved' (the patients' words).

We used to be prescribed NDTs - there were a number of them - then levothyroxine, or liothyronine. Now we get T4 alone whereas NDT has T4, T3, T2, T1 and calcitonin from cows or sheeps thyroid glands. The most recent was the removal of T3 without notice and left many desperate, mainly women. That's why many have to source from abroad which is a ridiculous situation.

jacewellness.com/articles/R...

I am going to put up a new post re Dr Lowe.

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