So the saga in my life continues. My primary has been steadfast in his position that nothing is wrong with my thyroid for over 2 months now and I miserable. As I have posted my TSH was at almost 9 and that was in August, but t3 and t4 normal. I have been fatigued even more the last week and even breathless and very weak at times. When I called today to find out what endo he would be sending me to his MA said he will talk with you about this at your next visit, which is April14! My insurance requires a referral from the primary or they won't cover. An endo visit and blood work are expensive. Primary sent me for a brain MRI and the tech noticed my eye brow which is more than halfway gone and she asked about it and was angered he had not referred me. Any ideas? I guess I could call an endo and ask what the appointment and bloodwork might cost me and see if I could try to cover it. My hair is now fogging out, but not usual hairs, these little tiny what looks like minituarized hairs and I don't know why. I take spironolactone and I haven't had hair loss from androgens in many years...why now? My only thought is my thyroid must be causing hormonal issues all over. Is this possible? So sorry for posting so much negative, just very tired of everything and loosing hope.
Hi trc, a TSH of 9 is definitely hypothyroid, which would make most people feel fatigued without taking thyroid replacement hormones. I know a lot about hypothyroidism, because I had my diseased thyroid removed several years ago. Even with levothyroxine, I still suffered from hair loss and now I take spironolactone which has helped reduce the hair loss plus some acne that I was having issues with.
It seems unusual that a primary would not refer you to an endo with a TSH reading that is as high as a 9. Yes, a thyroid that is out of whack can cause all sorts of physical ailments. The problem is that once we start collecting all of these chronic diseases/conditions, it is really hard to decipher which is causing what.
I would insist that the primary care doc refer you to an endocrinologist. I would not try to pay for the visit out of pocket, because the fees for just a doctors visit and labs would be astronomical. You certainly don't need to be sorry, because we all know that dealing with chronic illness is exhausting. Please don't lose hope...there is a doctor out there who will get to the bottom of what is causing your issues...just be persistent. Take care.
Thanks
LadyDi. My parents said I should be allowed a second opinion by my insurance company and I am going to check asap. I could then make an appointment and get someone else to take a look at me and my labs. I wont give up, I just feel discouraged and am glad to have a place to complain!
Hi Tracy,
I was made to believe I was a hypochondriac by many different physicians concerning hypothyroidism too! My hallmark symptoms were deadly fatigue (even holding a book was too strenuous on my arms) and always feeling freezing! (the cold would penetrate my bones). Yet no dr would prescribe medication because my TSH, T4 and T3 were always 'within range'.
After a naturopath determined a T4-T3 conversion problem through 24 hour-urine test and put me on natural thyroid meds I almost immediately felt heaps better. A lifesaver !!
Only recently - after an almost 20 year battle with mainstream physicians - my FT4 suddenly showed up low in a blood test, taken me totally by surprise. Maybe it's showing up now because I'm nearing menopause?
That being said I think the thyroid blood tests are FLAWED ! Obviously blood testing is not reliable in many cases. My money on the naturopath is well spent... !
I would get rid of this primary care physician. There is no debate you are hypothyroid and to make you wait to see endocrinologist is ridiculous. My daughter was depressed and exhausted when her levels were at 5.
Best to you.
Anna
hi mcccourt.
Can your rheumy step in and speak with your primary dr.
about your TSH levels??
My TSH levels had steadily gone up for years and my GP didn't
do anything about it and so I just ignored it as well.
Then when I got diagnosis from rheumy of sjogrens and RA, he noticed
a high TSH level 2 lab draws in a row. Each time he forwarded results
to my GP. At one follow up visit my rheumy asked if anything has been done
with my TSH results. I said no. So he then faxed a note to my GP
and said that my TSH needs addressed. That little note got my
GP's rear in gear and I got meds.
You can't successfully treat sjogrens fatigue if the problem also
goes beyond that....as in.....anemia , low vit D...or low thyroid.
Don't be afraid to ruffle feathers.....it seems you have to have outside help (rheumy)
shelly
Thanks for the comments, they are appreciated. My rheumy said my TSH was mildly elevated and might bear watching in the future. I am getting a second opinion even if it means I have to hound the insurance company and we will go from there. I am suspecting my ferritin is low, I struggle to keep B and D high enough with absorption issues so I take them sublingually. The truth is I just want to sit at home because I feel overwhelmed by how I feel and the fight with the doctor. Plus my flushing and dermatitis is quite bad and I am maxed out from school by the weekend. I am going to get a diagnosis though and work through this.
First of all if you are in the USA you are free to find a new primary doctor as far as I know. Also, your rheumy may be the one who will have to save you at this time. Keep on complaining and telling them your symptoms, I am astounded at your primary doctors reaction to this TSH count. If you are able down the road you may want to file a complaint with the clinic he is with. With his attitude it would be wonderful if you could get documentation from some other doctor and be placed on thyroid meds. I am not, by any means, referring to a lawsuit cause that is not something that anyone wants to go through. I do think it would be nice to maybe give him a jolt so that he is more careful about how he handles his next patients with higher TSH.
The other option is to keep on going down hill and then show up in emergency room sometimes. Oftentimes these visits will result in people being referred to someone for further testing. You might be able to wrangle a referral out of ER doc for an Endocrinologist and get it in writing to give to your insurance company. I would only do that as a last resort. Just some thoughts. Health care these days can really give us a headache. Good luck. Irish
My primary just thinks he is right and he feels like he has gone the extra step and tested t3 and t4 and with both in range then no treatment. If I am understanding right, the TSH is a message from the pituitary to the thyroid to produce more. The hormones may have been adequate in August but I don't think they are now at all. I may have to resort to an ER visit if necessary and try and get a referral. I have been with my primary and he has been good until lately and suddenly he thinks I am a hypochondriac, or just depressed and I am neither. I just want help to feel better and return to the land of the living and not just surviving. Thanks for the support, it means very much.
There's nothing worse than a Doctor who ignores the genuine concern of their patient. I have proven my GP wrong on 2 occasions. Both times he considered his management to be correct (and it probably was by the text book) but I did prove him otherwise.
The first time was regarding my Thyroid.
I had been having symptoms for years but my TSH was always within the normal range (T3&T4 and antibodies were never tested) so I was told all was fine. A couple of years down the track (and still having symptoms) after another TSH normal result, I asked him to feel my Thyroid.... I had huge nodules. An ultrasound, biopsy and surgeons visit later I had a total thyroidectomy. Pathology results showed a Multi Nodule Goiter with Hurthle Cell Adenoma. All with a normal TSH.
The second time was regarding my Ankylosing Spondylitis.
I have suffered back pain on and off since my late teens but in my 40's it was becoming more of a problem. I'd seen on TV as story about AS and googled it. I could tick off so many of the symptoms I asked my GP about it. He did order the blood test for a particular gene that is used as indicator for AS but it came back negative, so I was told I did not have AS.
Many years of physio, osteopath, acupuncture visits later my GP said "I am not referring you to a Rheumatologist". I took myself to see a sports physician, who also ran some blood tests which showed I had an elevated CRP and he referred me to the Rheumy. MRI's and Xrays later I end up with a diagnosis of AS. It appears you can have the disease without the gene.
Like many other Auto-Immune Illnesses, you can have it without it showing in your blood.
The point to my rant is that you will probably need to be pro active about this. Ask your Dr if they can run a full Thyroid screen, TSH, Free T3 & T4 and antibodies. Also ask your Dr to physically examine your thyroid. It only involves feeling your throat area.
If you Dr is not willing to do this, it is time to find another Dr.
Wishing you all the best. Aussie Mum.
My TSH has always been high at times when I am symptomatic. My T3 and T4 have never been elevated. However in later years my TPO is elevated which means I have Hashimotos. Hashimotos is generally treated with levothyroxine. I would advise you to find another Family practitioner or an endocrinologist. The ER is a thought but I would not do that except if you are feeling very ill. Could backfire on you and not help and cost money. Good luck. Wish I had something I could do for you. Your doctor does not sound like he is worth keeping. Irish
My GP would not refer me to a Rheumatoligist. I should say my former GP. I brought my husband to my very last visit with her and he asked her to refer me to his Rheumatologist. She was much nicer and more attentive to me with him there with me. Of course she gave me the referral.
She had been acting like I was a hypochondriac and was really being dismissive to me to the point of being flat out disrespectful. I shouldn't have had to bring someone with me to my appointment just to advocate for me but this is the real world we live in. If my husband couldn't come with me, then my daughter was going to.
I got my referral and was finally diagnosed by my Rheumatologist. That was the last time I saw that GP. I have a new doctor now. One who will listen to me and take me seriously. If a doctor does not believe that you are sick then how can they help you??
I feel for you because I have been where you are at. No one deserves this kind of treatment. Keep this doctor until you can find another one. You deserve so much better than this!! Your situation makes me MAD! Hang in there and don't give up. Your health is worth it.
Let us know how this all works out. My advice is to bring an advocate with you to your next appointment whether it be family or a good friend. It would be really good if they had some kind of medical experience but it is not necessary. Good luck to you and hope you get your help soon!
Kathy
When I get a diagnosis from a new doc I like to send the results of my tests to the doctor who told me I had nothing wrong. I wait until after I get over being made at the inattentive doctor however. It makes a difference as to whether I do send the results and what I write in the note I send him/her.
I am not vindictive(yeah right) but I do like to let the doc know cause it might help prevent them from doing it to another patient. Good luck. Irish
Why are a lot of GPs like that? One of my former ones would not sent me to see a Nephrologist for my kidneys. My potassium was up and down. Her thoughts were that if she couldn't find what was cause neither could a nephrologist. She almost caused me my kidneys. But fortunaly I changed GPs and with one test my new GP sent me to a nephrologist and we found out what was causing it and were able to bring my kidney function back up.
I called my insurance and told them I was hoping to get a second opinion and they said "if your thyroid level is not correct the dr. can refer you to an endo." I told her the primary didn't think I needed to see an endo but I wanted to see one myself. She was quiet and then said "request again that you want an endo to rule out a thyroid issue." I am going to request again but when I see my rheumy on Thursday I will ask him to contact my primary and request a referral for me to an endo. Maybe that will help? I used to have great insurance that didn't force a referral from a primary and it sure was easier. Hopeful for Thursday!