Could anyone supply me with the name of a private endocrinologist in the Midlands, as we feel that we are coming to a complete dead end with our GP with regard to my wife's thyroid problem.
My wife has been struggling to get adequate treatment for the past two years and failed. She still suffers from a list of distressing symptoms.
GPs just argue and say my wife's symptoms have nothing to do with hypothyroidism and inevitably ask if l am depressed.
Dear ihb3goto, please, if you receive some answers, would you pass them on to me? I am in the same situation, GPs saying my hypo symptoms are nothing to do with hypothyroidism, that I have ME and fibromyalgia and refuse to refer me. I am just starting a series of escalating letters which will culminate in pointing out that leaving me as I am is neglect but that's not a path I wish to go along.
Quite a few people on this forum end up buying their own NDT (Natural Dessicated Thyroid). You can start with half a grain and see whether it helps. You do need to familiarise yourself with symptoms of overmedication because you will have to, in effect, be your own doctor. In fact if your thyroid levels are not bad enough for the doctor to treat you could get hold of something like thyro-gold or the nature-throid version, which are of bovine source and weaker than the pig thyroid the other types of NDT contain. Then you have less chance of over-medicating yourself. If you find it works then you can move onto the stronger pig thyroid tablets if you need a higher dose (it's cheaper!). If you are self-medicating it is advisable to get a test from somewhere like Blue Horizon, once a year or so to make sure your levels of everything are healthy, because if your ferritin or B12/Vit D levels are low you won't make good use of the NDT.
You need to read the labels on Natural Thyroid support supplements, because many of them don't actually contain any hormones, just herbs and iodine, which probably won't help you.
Also read up on this and other forums about Hypothyroidism and peoples' experiences with NDT.
Apparently in the past, before blood tests, doctors would start their patients on NDT, increase the dose until the symptoms of overmedication began to appear (sweating, loose bowels, fast pulse, anxiety etc) and then decrease the dose slightly.
Best of luck!
Have they tested her t3 and t4 and tsh? What are the results? If not pay to get them tested privately, private endo's won't necessarily say any differnt if bloods still fit NHS guidelines.
It is good that you are trying to assist your wife in her illness. You are not the first husband to have the worry because they know their wives so well and want to understand but doctors/endos have no interest in solving the problem. Which should be easy when on the correct thyroid hormones for that patient.
The GPs hands are tied because the guidelines state that T4 (levothyroxine) only is to be prescribed. GPs who say, if the person is hypo, that symptoms are nothing to do with the illness are completely unknowledgeable about how our metabolism is fed with proper hormones and T3 is king.
I am assuming your wife has been diagnosed with hypothyroidism and given levothyroxine. (probably too low a dose) and has recurring symptoms which are being diagnosed as 'something other than thyroid' which is rubbish of course.
I was far more unwell when, finally, given levothyroxine that it was a complete mystery why!
Through Thyroiduk.org.uk (no HU then) and I found my way through to goodhealth.
I have also paid for Private consultations and I should have saved my money. Some members have had good Endos but they appear to be few and far between.
If you email louise.warvill@thyroiduk.org.uk and ask for her list of recommended doctors. You can then select a couple and put up a new post with their names and ask for information to be sent to you by private message. No info is allowed on the forum without the expresss permission of the doctors especially if they 'think outside the box'.
When your wife has a blood test for thyroid hormones it should be as early as possible and don't eat before it although you can drink water. If on thyroid hormones allow 24 hours between the last dose and the test and take levo afterwards. This keeps the TSH at its highest and may prevent the GP adjusting hormones unnecessarily so.
The doctors don't have to live with very unwell people due to the stupid regulations which state the blood tests alone are the diagnosis not the symptoms (they don't know any clinical symptoms but treat with another medication rather than a decent dose of thyroid hormones). The addition of T3 is often very helpful. I am fit and well on T3 only now and was also good on NDT (natural Dessicated Thyroid Hormones which contain all of the hormones a healthy gland would produce) instead they assume that most of us can convert levo (T4) to sufficient T3 (the only active hormone required in our receptor cells). Some people also have a gene defect and that result means that they cannot convert T4 whatsoever but doubt any doctor has heard of that.
thyroiduk.org.uk/tuk/testin...
If your GP hasn't tested Free T4 and Free T3 you can have these tested through a recommended lab and I'll give details:
thyroiduk.org.uk/tuk/testin...
Get a print-out of the results with the ranges and post for comments We can get well and I am one of those but it was a journey but successful in the end.
This is an archived link and there are other topics at the top of the page but the info is good. Dr Lowe died of an accident but was very humane for the suffering we undergo and unnecessarily so for many.
Thanks reallyfedup but I've already done this and am now trying to find a knowledgeable endocrinologist.
I paid privately to see an Endo in Solihull. Cost me a for tune even though I had private medical insurance through work just to be fobbed off by him to. I then ended up self sourcing t3 hormone from abroad. I thought same as you go see a specialist they will help. They can all be seen on nhs, so you get the same speel sorry
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