Advice on what to ask endo on Friday please

[dizzy864]

Hi Everyone,

I have a telephone consult with a private endo on Friday morning. I have been unwell for over six years. I'm sure I have Hashi's although I have never been able to get an official diagnosis. I've had years of months of being hypo when doctors have told me I'm hyper and need to reduce meds. If I'd known back then about hashi s I would have been a lot better. This year I constantly switch between hyper and hypo. It happens so quickly I can't react and vary meds. I've been very unwell since June. It started with my heart rate greatly increasing. It is now lower than it was but still too high. I'm out of breath all the time, very nauseaous, terrible muscle aches in my lower back and right hand. A near constant headache - always over my right eye. I have a lot of mouth / jaw pain always on the left side. I'm really tired all the time and get more so every day inspite of sleeping quite well for 9 and half hours each night. I have brain fog, no memory and very irritable!! I've also gained 11lbs since June as I'm too tired to do any exercise and I'm always hungry - and eating!! I think my thyroid is very swollen. I can't feel any bumps but it looks swollen when I look in the mirror.

I am unable to visit the consultant as he practices in a very high risk area so I've got a telephone consultation instead. I've not had any blood tests done since February - not able to get any new ones done as there is a supply issue with reagent at my doctor's surgery. I did consider private testing but felt I needed too many tests done - vitamins and minerals, anti bodies and thyroid for my budget. My doctor has said I can have them done as soon as they receive supplies. I did not want to put off speaking to the endo as I have been so unwell.

I was thinking of asking for my thyroid to be removed or killed but from what I've researched that brings different problems. Has anyone any suggestions on what I can do? What should I be asking the endo? How do I get well again ? I feel I have no life at all at the moment and haven't done since June. I've not had much of a life for the past six years. It's been really bad for so long. Any advice would be greatly appreciated.

[Anthea55]

May I suggest that you write down everything that you want to tell him. Do that soon, then have another look at it each day as you remember things you want to add and as your brain fog lets you do it. If you aren't sure whether it might be useful, put it in. It's all a jigsaw puzzle and it's better to have extra pieces that don't fit, rather than missing pieces - it's up to your endo to decide. I have what I call my 'medical CV' which lists as much of my medical history as I know with approximate dates, then I add to it whenever I need to. It's on my computer so I can print off another copy when I need to see someone medical. Some of them have said how helpful it is.

Then send your endo a copy in advance so that he/she can read it.

Keep fighting. Hope your endo is helpful.

[dizzy864 in reply to Anthea55]

Hi, thanks for replying.

However, I m ahead of you on that.

I ve kept a health diary this year as so much changes so quickly. I ve sent this and a letter with more info to the consultant.

What I m struggling with is what I expect from him. I don’t know what can be done. I ve been on T3 and T4 for many years.

I have read a lot recently about problems with Levo and wondered if lio only would be better.

[Anthea55 in reply to dizzy864]

Well done!

[dizzy864 in reply to Anthea55]

I just know how bad my memory has got!!

I ve twice forgotten to turn burners off on my stove and ruined two pans!!

[jrbarnes in reply to dizzy864]

I do the same thing! I left the house for four hours with it on. I put a pan on the stove and then go outside and forget.

[jrbarnes]

I try to be concise with Doctors. They have selective hearing. I state my symptoms and then state how it affects my life and that my goals are to get back to being able to clean house, exercise and work. For example, I cannot think therefore I cannot perform my work duties. I cannot walk normally and it affects my ability to engage in light exercise. My fatigue is severe that I cannot get out of bed. Keep it clear for them.

I can relate to not having a life and it started about four years ago with the worst debilitating symptoms. I spent this last Christmas and New Years in bed and my 40th birthday also in bed! Oh yes, and I'm still in bed. I have hypo due to a partial thyroidectomy. My heart goes out to you because I know flipping back and forth between hypo and hyper must be quite miserable. Good wishes for your consult.

[dizzy864 in reply to jrbarnes]

Hi, Thanks for your reply and kind wishes. I feel I've been fighting doctors all my life. Actually it's only most of the last 27 years. I first noticed hypo symptoms as I turned forty. I d been a full time mum to 4 children. My youngest was about to start school. I was really looking forward to going back to work. It never happened!! I had almost 4 years of sleeping 20 hours a day. I gained almost 4 stone. Every doctor I saw told me it was thyroid but tests came back as normal. I was given 10 different hrt tablets each making me more I'll! My GP was convinced I was having a premature menopause inspite of no family history.

Eventually a kind gaenocologist took pity on me and prescribed levo. Then I started a ten year battle for lio!! Then a 7 year battle for a dose increase.

I then had 6 years of really good health. Just constant argument s with doctors because my tsh is suppressed. When my battles started, I battles alone. Now at least there's the internet. I believe that my problems were mostly because I m female. I really don't believe a man would have been treated as badly as I have.

My daughter has just started self medicating. Nothing seems to change for us thyroid patients. It's disgraceful!!

I hope you feel better soon.

[jrbarnes in reply to dizzy864]

I try not to get miffed about all the research that goes into other diseases, illnesses and conditions yet no one talks about thyroid disease. It's clear no one in charge has a thyroid condition. I'm glad I reached out to the internet last year to educate myself or I would be disabled. Thank you and good wishes.

[dizzy864 in reply to jrbarnes]

If it were only no one talked about it, it would not be that bad. As you say there is always the internet. What I can’t understand is why there are so very few knowledgeable thyroid endos. I waited 7 months to see an endo at my local hospital. He was actually a very nice guy. He didn’t tell me my TSH is too low when it’s suppressed due to taking T3. He didn’t try to tell me I m depressed or that my problems are not thyroid related. Instead he was honest. He told me he was sorry but my problems were outside his field of expertise. He also confirmed that there was no other consultants there that could help me. Why is it near impossible to find an nhs endo that actually can help with thyroid issues. There’s certainly no shortage of patients with thyroid issues.

[jrbarnes in reply to dizzy864]

I'm in the US and just like the NHS the Doctors in our healthcare system have too many patients and no time to find a solution to health concerns, and most lack skills beyond the basic knowledge of thyroid care. If you don't follow the ABC 123 treatment it seems you are doomed. Many people here despite paying out of pocket for health insurance coverage are seeking out treatment from private pay Doctors and nurse practitioners because they want their lives back. Two different systems with the same problems. I would be upset after waiting 7 months to see a specialist only to hear they can't help. 80% of thyroid patients are women and the financial burden and added cost of resources used is down to the lack of knowledge on behalf of medical practitioners, and with levothyroxine being the third most prescribed medication it deserves its own area of specialty and specialists that specifically handle hard to treat thyroid cases. I'm not into conspiracies but the pharmaceutical companies are making millions off thyroid medications purchased. We deserve more research and special care for a good quality of life! Thyroid disease majorly impacts fertility in men and women, and with it on the rise that should be taken seriously. My hopes for the future of young people is that we can stop padding the pockets of pharmaceutical companies and find real cures for this growing epidemic. They're trying to cure cancers but not the slow death that thyroid patients experience? Well, I could go on all day about it!