This was not unexpected by any means. My doctor was rather easily encouraged by me, to refer me. I saw a copy of most of his letter online and I was pretty much sure I was ‘set up’. A mention in the letter re: my refusal to take an increase in Levothyroxine. I don’t think I actually refused but I would certainly have been wary. My obesity is conveniently used against me when it suits. “It’s your age. It’s your weight. It’s your posture” and this is one of the ‘good guys’. My muscles are not improving. I refused statins. The list is boring and long. Much of what everyone else is putting up with. A fear that basically I am making no further improvements. This is it. I can’t even honestly describe myself as static or level. I have noticed no real improvement since moving on to 75 mcg. Now at 100mcg. My T4 looked fairly healthy. If I add more T4 and continue with poor conversion I feel like I will be wasting time but maybe that is what you will advise.
The letter.
I consulted the …….hospital Thyroid Consultant and have received the following reply.
“Thanks Dr …… you can just let her know TSH is the sensitive marker for primary hypothyroidism and she just has to trust you to titrate thyroxine dose further. Free T4 level will fluctuates and affected by the timing of levothyroxine ingestion vs time of venepuncture whereas free T3 is a markers that could fluctuates during acute illness. Free T4/free T3 are not a useful marker for thyroxine titration outside the context of central hypothyroidism. TSH has always been the most sensitive markers for primary hypothyroidism. Hope this helps.”
Quoted grammatical errors and all. I do not know if this was the surgery translation of the letter from the hospital or a true copy from the hospital.
However now I must deal with the next step. I have agreed with myself to have a full thyroid test including the vits and minerals on or about 12th September. My ferritin is being checked by the surgery in September too - at my request.
Can I presume I go back cap in hand for an increase in thyroxine? I don’t think I want to increase it until I get a look at the private test results in September having taken all the supplements you all have advised.
Your comments would be appreciated.
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arTistapple
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Of course, what the endo says about FT4/FT3 not being useful markers is complete twaddle, but we're saying that every day here, it's just a shame doctors don't have more understanding of how to treat hypothyroidism.
If I add more T4 and continue with poor conversion I feel like I will be wasting time but maybe that is what you will advise.
Why would we? Looking back at a previous post I said you had poor conversion and said
Your problem is low T3 so if/once all nutrient levels are optimal (levels given above) if you still have such a low FT3 compared with your very decent FT4 level then it would be T3 that you need.
You know part of me was teetering. Thank you for picking this up again for me. I will wait and do the tests in September, clean sheet and all that. Plus time to check out results of supplementing and the very dodgy ferritin result.
When I was first given levothyroxine after I diagnosed myself when GP had phoned to tell me that my blood tests were fine and I had no problems.
As my TSH was 100 !!!! what kind of GP's training did he posses!!!
Thanks to Thyroiduk.org.uk I got onto the right path and was so very fortunate to consult with the final two fully - qualified - doctors who were sought by many of us who had no diagnosis by the 'modern trained' GPs.
Dr Gordon Skinner and Dr Barry Peatfield - whose patients recovered their health were pursued by the 'auhorities' for so doing and were threatened with the withdrawal of their Licences.
Dr Peatfield resigned but 'advised' patients who travelled all over the UK for his advice and to recover their health. He died due to age but was badly missed.
Dr Skinner's staff - were devasted with his demise when at work but they have collated all of their scientific evidence that they did over the years and want to publish it. They need sufficient monies to do so and I hope they are able to do so.
Thank you shaws for your support/info/experience etc. It’s very valuable. I would love for this research to be made available. Is there a fund? I don’t think it will hit the medical community in my lifetime, going on what we see and experience on this forum but it surely worth making the attempt.
This is a link that is informative. I do hope there was sufficient £££s. His staff stated that their collection of evidence would l 'shake up all of the professionals'.
Dr Skinner attended as did Lyn Mynott (who began Thyroiduk.org.uk)- attended the investigation by the Scottish ParliamDent about this one woman whose life was saved by finding this forum. She had already told her son and husband that she could no longer continue and was going to take her own life.
Dr Skinner had a clinic in Glasgow although his main one was in Birmingham and I consulted with both Dr P and Dr S and was very fortunate indeed to talk to doctors who were actually knowledgeable about how unwell we can and that was through their training as doctors.
After reading the letter from the Endo, I think you’ve had a lucky escape - he’d more than likely make you worse, he’s no thyroid expert. Follow your plan and once you have all your test results you can hopefully move forward.
I was far more unwell on levothyroxine than I was when I was finally diagnosed with a TSH of 100 (and GP had phoned to tell me I had no problems at all!)
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