The Endo doctors are not undertaking the necessary tests they tend to concentrate on TSH and FT4 not providing the whole picture.
I have no problem if they want to limit the testing to TSH and FT4 but for me it is not good enough, I have my own blood tests done privately this way I can see exactly where I am with TSH FT4 FT3 Antibodies etc. for Graves Disease
It does not cost the earth to take matters into your own hands.
Why would I want to beg to see my test results when I can have them within 3 to 4 days at a fraction of the cost - it is empowerment to challenge the Endo doctors
Written by
Angel20
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Even though I have been suffering with Graves' Disease for over 10 years I still only get my TSH tested. My GP has requested T4 and T3 but the lab refused when they see my TSH is in range. As for antibodies ... I might as well whistle for them because the lab won't test those either because my TSH is in range. That is why I have just paid over £90 for a blood test to be carried out by Medichecks. I have actually showed my GP my high antibodies on my Medichecks results and he has said that he cannot accept them because he has to use the NHS lab who will only test the TSH. It is all very frustrating and that is why I won't bother to show him my next results but I will post them on here for other members to advise me. I have lost confidence in my GP and the NHS when it comes to treating my Graves' Disease as they originally kept me ill for over 2 years with a suppressed TSH of 0.002.
I get the feeling most endocrinologists or doctors that treat thyroid issues have never even had any thyroid related illnesses 😄. Surely if they have, they would understand the frustration of ongoing symptoms and dealing with people who are so ignorant on the topic and would, or at least should, think twice before assuming there’s nothing wrong.
I took my husband to one of my Endocrinologist's appointments and he spent all the time chatting to him instead of me. If I hadn't felt so ill I would have said that I was the patient not my husband! so stop asking him all the questions about me when I am actually sitting here!!
Trust me, I know what you’re talking about. Almost all the male doctors I have had the misfortune of dealing with were sexist, arrogant and prejudiced (for no good reason) and did not take me seriously from the get-go. The few of them that did, I could count on 1 hand. One of them (a psychologist) even tried to imply I might be neurotic just from 1 session with him, which mostly consisted of him talking about himself and his achievements. So many times I have wanted to just smack some of them for being so rude and smug...but I had to just sit there and pretend to be calm because there is no point in arguing with deluded idiots 😄.
I agree ... my GP who has a bald head sat infront of me and said "It's only hair" when I told him my hair was shedding hundreds a day. I did actually tell him that he didn't seem to mind having a bald head because he shaved his. He then gave me a referral letter to see a dermatologist privately which cost me £150 and she told me I had female pattern balding when my TSH was suppressed at 0.002. I am not bald 10 years later it is all to do with my thyroid which several Doctors did not spot for over 2 years.
My hair still falls out drastically until this day and my thyroid symptoms started showing intensely around 12 years ago. Sometimes, it will fall out less but those periods don’t usually last long and the hair loss eventually gets really bad again. I have noticed it helps a little to keep my hair really short but not so much that I’d think it’s worth it to keep the same haircut.
I know there are other factors that can contribute to hair loss (like water high in chlorine concentration or unfiltered water with high levels of minerals, rust and sediment) but, even then, a healthy scalp doesn’t actually shed as much hair as ours do in such situations. I have not gone bald either but my hair is a third of what it used to be before it started falling out. I used to have a lot of hair that barely shed but now it falls out when I’m just sitting and not even moving or doing anything to it. Showering and brushing it is so depressing because of all the hair that falls out so I can honestly understand how others in the same situation feel.
Thank you for bringing this subject up hair loss. Many are on Carbimazole or other tablets, no one is talking about the real side effects, which one of them is HAIR. It is the tablets that are causing hair loss due to the dosage of the anti thyroid tablets, this balancing act is difficult for the Endo's to do. I said to the Endo a couple of days ago less is more, start from low and see what happens not the other way around.
For me, it’s trying to get the right dosage for my hypothyroidism symptoms to go away. Sometimes I end up having a hyper swing and my hair falls out even more, any way 😄. It’s extremely hard to find the sweet spot, especially when each of us require a different dosage and most doctors prefer to cut corners and go by the text book rather than delve deeper to find what matches each patient’s personal needs.
Its because they go by the book, and depending how severe symptoms are. Even with a low dosage there are still side effects unless one starts with a min of 1.5 per day and see how the body responds and only raise it if its not doing it.
I believe one needs to have knowledge in order to be empowered to effect change.
This is all very well when one is able to take on the knowledge and understand the implications of one's health issues.
When unwell and in a state of flux many people are unable to understand their situation, let alone know what to do, and so go to the doctor, as the first step in their understanding.
It is dependant on the doctors one sees as to how things proceed and like any organisation the abilities within will be mixed.
I was diagnosed with Graves in 2003 and sadly very little information was forth coming.
I was advised at the outset I was to have RAI in 15 months time, although I was fine on the Carbimazole, and I still do believe my treatment at 56 was age dependant.
I deeply regret this treatment option but was offered no choice and in my defence, being dyslexic simply trusted the system.
Since becoming very unwell some 6 years ago and finding no help within the NHS I have managed to turn things around for myself, thanks to this amazing site and a couple of books.
The NHS work to guidelines and until these regulations are amended, we all fall into line to be moved through the system as quickly and as cost effectively as possible. I haven't worked full time since age 57 and live alone on a single person's pension in a shared ownership property - I have paid into the NHS for over 40 years and I do resent paying privately for thyroid blood tests that should be mandatory.
My new Endo was initially reluctant for me to have a thyroid scan and he was also reluctant to do blood test for antibodies stating that the lab may not do them
What nonsense is he the doctor or not !
Why should the lab ignore the request from doctors or is it because they want to save money at our expense.
From our prospective as a patient we have the right for additional tests if the doctors refuse do them private and stay on top of things.
Kings College Hospital which is under the NHS do private blood tests why would any doctor working for the HSH dismiss the blood test results.
Empowerment is taking responsibility for one’s health do not rely totally on the doctors
We know what the range is and we also become much more educated on thyroid issues and also gain knowledge from our friends in this forum
The NHS has always been struggling. I actually worked for them for many years and there has always been problems. My husband was a hospital manager and he could see that bad management was the cause. He left and retrained in the law because after 20 years he could not see a way of making the service work. Hopefully Boris might do something but to be honest I doubt it. I however still think the NHS is one of the best health services in the world because it treats rich or poor people and nobody has to pay for it unlike other countries where some people cannot afford health care.
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