Why do doctors love levothyroxine?!

Hi Cindy. Yes I did some research to find the best endo in my area and I paid to see a private endo at the back end of last year. That's how the misdiagnosis came to light! So glad I did

Luckily he works on the nhs too and I'm seeing him for free next week

Hi 

That is great. Did you have any problems switching from private to NHS at all?

Hope that you do not mind my asking?

 

Hello

Would you mind my asking for this endocrinologist details?

I have a PM facility.

Many thanks in anticipation.

 

Hi Cindy,

I asked to get referred to an endocrinologist on the nhs and they put me on a 4.5 month waiting list as my problems were apparently non urgent. But my hair was falling out, my heart was crazy and I was so exhausted that I found this guy and booked an appointment with him in the interim. It was good to get his initial thoughts and treatment plan and told me that the tests were expensive so I might as well hang fire and get the nhs to do them for me. When I got to see someone on the nhs it was a different person and I explained I had seen this guy privately and could I be transferred to his clinic for my next appointment and it wasn't a problem. He isn't the best communicator, but he really does know his stuff when it comes to thyroid and looked at the whole picture to try and treat my symptoms (he even got my doctors to test for lymes disease which is totally unrelated, but it was to rule things out which I thought was excellent). He's based in Reading, Berkshire- I'll pm you his details

Thanks for the info.

This endo sounds brilliant because I have often wondered if I have or had Lyme disease. I certainly had the signs and symptoms.

I cannot believe that drs are  so indifferent.

Gratefully yours Cindy

Hi Cindy, Yes the symptoms can be similar to hypo symptoms and it hadn't even crossed my mind until he suggested it. They said it's very hard to test for, so they often give you a course of certain antibiotics and if you have the disease it will generally get rid of it

Hi caz, can I have his details too please? I'm trying a gastroenterologist first to see if I've got the parasite blastocystis hominis. After that I may well be looking for another viewpoint. Thank you.

Thanks. I did not know this.

How does one know if one has got rid of it anyway when the thyroid sreening can vary so much?y

Hi Cindy I assume the symptoms would subside (mine didn't, so they think I never had it). Im sure you could probably pay someone a lot of money (and I think it would be expensive) to have tests done and confirm, but I hear it is very difficult to diagnose

Hi Caz

I am sorry but I don't follow.

What were your thyroid levels at the time of diagnosis?

 

Sorry Cindy I thought you were referring to lymes disease. My t4 was within range and my Tsh was 5.5 (only borderline). So to be sure, they should have found out the root cause of this through thyroid function tests, hashimotos test, mineral panel blood tests, adrenal tests and ultrasound to check for structural problems in the thyroid. Im guessing my levels would have gone back to normal eventually had they not treated me, but it is difficult to tell.

Hi Caz

Is it possible to communicate by private e mail address?

If not I will understand.

 

Hi lucy, unfortunately there arent any tests for cfs, which is why a lot of thyroid patients get this diagnosis in addition to hypothyroidism. The symptoms are very similar. It is usually diagnosed after all other conditions are ruled out. You will probably have a lot of blood tests and usually when they don't know whats wrong, this is usually what they tell you. Im not convinced I have it. Looking at these forums, I believe it's related to the medication I am taking (levothyroxine) as my symptoms were no where near this bad before I took it.

Hi

​Thanks for your reply. 

​Have you tried alternative thyroid meds at all?

​Lucy