Hi all, I hope you all had a really nice bank holiday weekend
A month I noticed a sudden hyper pigmentation all over my body. Addison's disease has been ruled out. I have Hashimoto's. I experienced the change in pigmentation once the doctor asked me to reduce my levothyroxine from 125mn to 75mg as my TSH was really supressed. My TSH is within 'normal' range but my T3 was not tested. My T3 was 3.1 when I was on 125mg.
I am really lost. I went to see an endocrinologist and he said he doesn't think it's hormonal whereas I strongly believe it is.
Can someone please advice?
Written by
sarahger
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I don't know if there's any connection between your change in pigmentation and your thyroid, but your GP doesn't know very much about thyroid, does he. He is dosing by the TSH, and that is wrong. He should at least look at the FT4. The TSH is more or less irrelevant once you are on thyroid hormone replacement, unless it goes high. A suppressed TSH does not automatically mean you are over-medicated. You are only over-medicated if your FT3 is over-range. Also, he should not reduce your dose by more than 25 mcg every six weeks.
Can you change your doctor? This one is going to keep you sick!
Thank you so much for your response! I saw a few different doctors who work at the same clinic and all of them thought TSH alone was sufficient, which I argued against. I even went to see a private endo who has been reviewed to be an expert but was far from it. He also said that my hyper pigmentation had nothing to do with my thyroid. He also just based everything on my TSH alone. I am at loss now. I have spent so much money and have seen different doctors and they all refuse to see that there is something seriously wrong.
I will have to change my GP but really worried that due to budgeting they are not looking into T3 and T4.
That's true. They're not. They don't. And they don't really have any clear idea what they're doing.
Apart from taking over the control of your treatment - buying your own hormone and doing your own tests - I don't know what to suggest. They just do not have the knowledge or the expertise to deal with anything out of the ordinary.
Pathetic, isn't it. You would think they would revel in the 'odd cases' because it gives them something to get their teeth into. But, they only seem to want the easy, every day, boring old cases. I don't understand.
Doctors who adjust dose according to the TSH (as they appear to do) know little about thyroid diseases. If one is hypo/hashi's the aim is a TSH of 1 or lower, not adjust doses according to the whereabouts of the TSH. They should treat and relieve the clinical symptoms (but they know no symptoms). The skill doctors had before the introduction of levo and blood tests has disappeared and the result, for many, is difficulty in recovering and relief of symptoms.
Thank you for your response! I haven't been diagnosed with anything in regards to my skin. The doctor and the private endocrinologist who I saw both acknowledged that there is hyper pigmentation but both didn't know what could be the cause. I did argue all the points you mentioned but they pretty much completely dismissed me. I said I had concerns as my T3 was on the low end of normal when i was taking 125mg levo so surely reducing my dose to 75mg would have an impact on my T3. They laughed at that comment
Ignorance is bliss, so they state, but for people who are supposed to be the 'experts' have ruined many lives for the want of studying all of the possible thyroid hormone replacements that make people have a symptom-free life as well, and most important, clinical symptoms.
That's why many on the forum have 'done it themselves' and improved their health. Why accept nonsense from those we have 'helped' towards their medical certificate when they cannot realise the person in front of them is anxiously awaiting for them to solve the disabling cinical symptoms. It can be done but they aren't interested.
I have researched a lot to help my symptoms. I also have a pretty low cortisol and the doctors and 'expert' didn't suggest anything for it. I had to do my own research to see how i can help myself.
Surely, when we are struggling health wise we should be able to rely on doctors and experts who have studied for years to help us or even care.
Big Pharma lays down the rules of 'how to' 'what to do'.
One of our doctors (deceased) was up against the whole of the Endocrinology one of whom stated to his patient 'we've got him now' unaware the patient was also seeing the other doctor. It was not by chance that the deceased doctor had 10,000 testimonials from grateful patients "whose lives they saved" and who also appeared at the GMC where he appeared.
How many doctors/endos would have had so many testimonials of support.
He was Dr Skinner who ran the Vaccine Research Foundation but was being sent patients by other doctors as the patient had 'mysterious diseases' (probably the TSH didn't rise high enough). He found that they were hypo due to symptoms and he did state that people were in a Parlous Situation due to the modern method.
That is very true. At the end of the day, it's business for them.
He sound like he was an incredible doctor who truly cared about his patients. I tried to research Endos who are considered 'top doctors' in London and found an average of 5 reviews per doctor. I have also noticed many GP reviews are extremely poor.
Even going privately really doesn't make any difference. They all have the same non-nonchalant and dismissive attitude.
If only there were more doctors with real care for patients and also consider root causes rather than just symptoms.
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