I have come to hate doctors. Which is sad because they are supposed to be here to help us. I started with issues in January, mainly vertigo and severe head colds, sinus issues. It was to the point I could not work. So they docs thought I had Meniere's and told me to lower my salt intake (they did not say to what levels) So I did, I got my levels to about 500mg a day. I kept asking my doc if that was ok. She kept dismissing me. I dont think she believed that I could get it down that low. (but you can) So about a month later they said NO I dont have Meniere's but about 4 days before that my throat swelled up. The glands on both sides of my throat are enlarged, very sore. So the doc dismissed me again. I couldn't handle the pain so I went to another doc. She was good at first. She sent me to a sleep study. i do have sleep apnea. I went back to her because again I couldn't handle the pain. She tested my thyroid. Said it was normal, I begged so she ran a antibody test, the results were<10 and the other number was 1.01 not sure what it means. She is a specialist in the field. She called for a ultrasound. She said I have a small goiter, but doesnt think it is anything to deal with at this time. So I went back very upset because I cant work. I cant get up and move around much becauseI get winded and it makes my throat swell worse. The pain is awful. She said that there is nothing really wrong with me and sent me to a phyciatrist. She gave me some meds for severe depression. Which are helping with my mood but not my throat She keeps saying nothing is wrong with me but if you LOOK at my throat you can see the swelling and I can tell you I have no quality of life at all.
What do I do now???
You are being treated like crap and I'm really sorry you're going through this. It really infuriates me when a patient with obvious goiter and extreme pain is turfed off to a psychiatrist. It does sound like thyroiditis and any half-wit doctor should be able to figure this out.
I think you need to keep looking for a good doc and in the meantime at least try to get your thyroid hormone levels checked: free T3 and free T4. I assume you've had both Hashimoto's antibody tests, TPO-Ab and TG-Ab? They should also have checked your vitamin D and B12 and ferritin. If you have any of these labs that were already done please post with the ranges.
Are you taking any anti-imflammatory meds and are they helping at all? They might help with the inflammation somewhat until you can get this figured out.
I asked them to send me all my numbers and I have not seen them yet. 3 months ago my Vitamin d was 19 and now it is 42.
The ibuprofen doesn;t work anymore. The pain is better if I stay away from bread. But it hurts all the time. The doc said the goiter is not big enough to deal with. But I hurt from into my jaw all the way down to my collarbone.
Sorry there is more.
My new doc is an endo. but she isn't much better then my old doc who is a gp. She made a comment in passing that I may have had subacute thyroiditis but it must have passed because my numbers are within normal ranges. I said 'but the pain is so bad' she said 'well i ran the tests what more do you want'
I did see an ENY and he scoped my throat and said whatever is going on is in the neck not inside the throat, like that helped me at all.
I will try to get all the lab results, no one explained the numbers to me or what they mean. So I have no idea...
Your FT4 isn't too bad, at about 65%. But you need a Free T3 to verify if you're hypo or not... I don't remember you saying if you had hypo symptoms, just pain from the thyroiditis?
Which antibody test did they run? There are two for hashimoto's: TPO-Ab and TG-Ab. One could be pos and the other neg so need to run both. You also need to keep supplimenting D3 as you're still low, should be well up over 50 and some say up to 80 or so. You also need to test for ferritin and B12.
Unfortunately all you can do is try to get more of the tests and see if you need thyroid meds. Even if your antibody tests come back neg you still might have Hashi's as they are not terribly sensitive tests. I suggest you keep trying to find a doctor who will test and treat you appropriately.
They ran the TPO AUTO AB which was <10 They did not run B12 or ferrin. They didn't run the TG test either. My husband cant figure out why they wouldn't run the tests. But the Doc told me it was a waste of money. Would not even talk about it. They refuse to run the free T3 test as well. i just don't understand.
I do have symptoms, I am tired all the time, My muscles hurt, I cant sleep, no matter how much I diet I am gaining weight... I just feel like crap all the time. But the worst has been the pain in my neck...
I'm sorry but if it were me I'd be searching for another doctor. It doesn't have to be an endo, in fact most of us here have had bad luck with endos. You need a doc who will work with you and get the proper testing done and who has a freakin' clue. IMHO the free T3 is the most important test of all because T3 is the active thyroid hormone that actually goes into the cells and regulates your metabolism. If you don't know those levels you don't know where you're at.
I know this is hard when you're feeling so crappy. Most of us have had to slog along and keep turning over rocks to find a doc who works for us. Try posting forums for a recommendation in your area.
I've corrected my math on figuring your Free T4 and it's actually up at 96% so that's where it should be in range. I'd be curious to see a Free T3 to see if there is a big gap there but one thing you should do is get these labs tested regularly, especially the free Ts and your antibodies. With thyroiditis you need to keep monitoring. If you keep running into issues you do have the option of ordering your own lab tests online. Feel free to PM me if you want sources.
I would love sources.. I live in the Burien area (right outside of Seattle, WA)
My husband and I can not figure out why she wont just run the tests. It makes no sense what-so-ever.
I stopped eating bread 4 days ago and that made a big difference. This all started in Januaury with the vertigo. I kept asking my docs if 500mg of sodium a day was enough and they didn't seem to be interested. There is a type of Thyroiditis brought on by improper diet. My current doc thought I was joking when I said 500mg. So I showed her my log books. She said no, its not enough and to take in 1500-2000mg a day. It been 6 months of the bad symptoms and pain and years of other symptoms. Like I exercise 5 days a week, I have job that I never sit still and I diet all the time and NEVER lose weight. I am fit but not thin.
Your claim to feel better without bread is significant. Look into getting tested for Celiac disease. It is a huge growing problem now and I would strongly suggest you try going gluten-free for a couple of months and see if you feel better. Celiac can give many of the symptoms of hypothyroidism.
I have trouble eating bread too. I limit myself to 2 slices of whole wheat bread or 1 oz spagetti. I find toasting the bread helps until it gets very hard. My main symptom is becoming very tired so I usually only eat bread type products before I take a nap. That way I can sleep it off. Fam
I was sent to a new Endo and he re-tested my tsh which is now .73
In February it was 1.12
May 28th .91
July 7th .49
July 30th .73
He pulled up the ultrasound of my goiter and it is just under 1cm. So he says that until it is 1cm there is nothing they can do. But I have to go back in 4-5 months for another ultrasound. If the goiter has grown they will do a biopsy.
I still feel bad all the time. I am tired, i am now having trouble breathing. I can breath it just feels like its not enough. No bread helps, if there is anything else I can do to feel better I am all for it.