I think the thyroid nightmare is about to get worse

Feel free to discuss any topic of general interest, so long as nothing you post here is likely to be interpreted as insulting, and/or inflammatory, nor clearly designed to provoke any individual or group. Please be considerate of others feelings, and they will be considerate of yours.

Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh

Post Reply
User avatar
LindyLou
Adélie Penguin
Adélie Penguin
Posts: 182
Joined: Tue May 31, 2011 5:20 pm
Location: New Baltimore, MI

I think the thyroid nightmare is about to get worse

Post by LindyLou »

Good morning everyone! 8 years ago, right around the time I was diagnosed with MC I was also diagnosed with hypothyroidism. I now have a new diagnosis of hashimotos. I am so frustrated with just about every doctor (GI and Endo) I have seen it makes me want to scream!: I've been being treated by my GP for thyroid over all this time, however for the past year, my thyroid has been all over the place so he referred me to an endocrinologist. Before my first meeting with her, I not only filled out her extensive questioner, but also expanded on all the yes answered questions as I also have another AI disease - microscopic colitis and I am not sure which symptoms are attributed to which disease. She spent a total of 20minutes with me. Asked a couple of questions, did a cursory feel of my thyroid and said she didn't feel anything and attributed my symptoms to menopause. She didn't even bother to read my addendum to the questionaire. Then she had my blood drawn, gave me a new prescription for Tirosint and told me to come back in July. Well, my blood tests came back - the results are as follows.

T4 Free. 0.88. (0.73-1.79) ng/dl
T3 Free. 3.6. (2.3-4.2) pg/ml
TSH 3rd generation. 5.88. (0.350-5.50) uiu/ml
Anti Thyroid Peroxidase 4243.6 (0.0-59.9) U/ml
Anti Thyroglobulin <15. (0.0-59.9)

I called the office and asked doesn't the doctor want to do any follow up testing since my AntiTPO came back so high and was told no but we will retest in 6 weeks (TSH and T4 only). This hasn't set to well for me so last Monday I went back to my GP to tell him what has transpired. It didn't set too well with him either so he ordered an ultrasound and more blood work to be completed. Looking at pth, pituitary, calcium, and probably 5 or 6 other things that my foggy brain cannot recall at this time but they actually drew 8 vials, and he also said that he felt lumps in my thyroid. When I went for my ultrasound on Wednesday, in talking with the tech, although she said she couldn't tell me specifics she left the screen in full view for me to see and did point out the anatomy I was seeing. Anyway after taking the overall measurements of my thyroid, she started measuring areas within the thyroid (right side). It appeared there were six nodules on the right. She also showed me a vascular view which were red in approx 4 of them. Not sure what the left side looked like as my head was turned away from the screen however I did see a vascular view which showed 2-3 red areas. I also asked her to show me a side by side comparison view which shows the rh thyroid quite a bit bigger than the lh side. I'm trying not to freak out at this point as the results haven't been passed to my doctor yet but of course my mind is going to dark places. I like my GP. When he first diagnosed me as hypo, he stated that he doesn't treat by labs alone. I'd like to stay with him for treating me however I don't know if that would be in my best interest.
I have also had to have extensive periodontal surgeries as for some reason I'm suffering with extensive bone loss and need 4 teeth extracted. We started this phase with the first tooth extraction and when I went for my surgical follow up with him I brought these recent blood test results with me. After he read them he said "We are going to stop all treatment until they kill my thyroid." This disease has had such a large impact on my life. I had a dream career that I left in February because my analytical thinking went into the toilet (yes, pun intended) and mentally I felt like I was shattering into a million pieces!
I posted on the thyroid boards my results and from the senior member of their board she replied

"Good thing you pressed for it at high titers such as your can suggest cancer."

Great huh? I'm having a really pissy day today and needed to vent.
I am just so fortunate I have a husband that supports me and try's to help me in so many ways. I don't know what I'd do without him. I apologize for the length of this post, I just had to get this off my chest.
Thank you for listening,

Linda
User avatar
tex
Site Admin
Site Admin
Posts: 35067
Joined: Tue May 24, 2005 9:00 am
Location: Central Texas

Post by tex »

Hi Linda,

That endo must have found her certificate for her specialty in a box of Cracker Jacks. What a pathetic performance. I doubt that you have thyroid cancer, but if that should turn out to be the case, you seem to have valid grounds for a malpractice suit against her. I don't know what she charged for that consultation, but whatever it was, it was just plain robbery, since her advice was totally counterproductive.

You are fortunate to have a GP who is helpful. Experiences such as yours are the main reason why I haven't bothered to try to see an endocrinologist for my thyroid issues — too many of them seem to be dysfunctional and unhelpful for complicated cases.

Best of luck with this.

Tex
:cowboy:

It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
User avatar
suzieq
Adélie Penguin
Adélie Penguin
Posts: 220
Joined: Sun Jun 19, 2011 6:48 am
Location: South Carolina

Post by suzieq »

Linda,

I hope that you are feeling better soon.

My former Endo was not familiar with the term Microscoptic Colitis or Collangeous Colitis. I don't go to him anymore because insurance changed, I go to my GP now. I was also diagnosed within a few months of each other with fibromyalgia, hypothyroidism and CC.

Feel better, good luck to you.

Susanne
tnelson
Adélie Penguin
Adélie Penguin
Posts: 93
Joined: Fri Feb 17, 2012 3:08 pm

Post by tnelson »

I had a similar visit to an endocrinologist. What a waste of time! But I have found a good one. I had to visit SIX doctors before finding "the one."

The doc I have now is a consultant and sounding board for the course I'm planning to pursue. The relationship works for me. I don't like doctors who issue decrees. Others might need a different kind of doctor, so it's definitely a matter of match making.

--T
User avatar
LindyLou
Adélie Penguin
Adélie Penguin
Posts: 182
Joined: Tue May 31, 2011 5:20 pm
Location: New Baltimore, MI

Post by LindyLou »

I've been giving it a lot of thought and have pretty much made up my mind that if I have to have either RAI or surgery or actually whatever course of treatment I end up going on that I'd like my GP to manage that care. He and my periodontist are the only two doctors that actually would take the time and listen and consider what course of treatment I want. Any specialist I have seen so far whether GI (been through 4 already) or now 1 Endo have been pretty useless. I should be getting some results back probably mid week. I'm feeling ok today and that's what's important.

Linda
Post Reply

Return to “Main Message Board”