Do I have Hashimoto's?

Wow, I'm new to this forum and I'm liking what I'm reading! I wish I had come here a long time ago!

I'm going to tell my story and I'll try to make it brief. I do realize that it's hard to find a doctor who understands 100% what's going on with your body, or as my husband says "what's going on with my body isn't gravely serious and that's what the doctors think." I live in Spain, although I was born in the states, and medicine here isn't as preventive as it is in the states. They deal with the problem when it shows definite signs and then things could be too late!

As I stated before in another question, I'd been having muscle aches during most of 2007. I saw several doctors and a few rheumatologists (because my rheumatoid factor was a bit high), but to no avail. I finished the year taking antidepressants for about 3 months because my psychiatrist friend thought that would help because I wasn't sleeping well. In Jan. 2008, after a cold, I was sooooo tired that I couldn't really do anything! I went to see if I was anemic. My results showed my platelets being high (which they have been since I was pregnant in '94), my "whole" iron at 47 ug/dL, my ferritin at 2.32 ng/mL, my ind. of transferrin saturation at 11.84%, and my Total T4 at 54.19 nmol/L. Those are the things that were off...everything else was normal. I started looking into the thyroid and hypothyroidism and was sent to an internal medicine doctor ("a female, so that she'd understand me better" the GP said). Well, I was put on iron for 2 months, told to stop for a month afterwards and then do another test. She had also looked into other things and the only things that turned out as positive or "off" were the IgG antibodies for Epstein-Barr (Mono?), IgM at 248 mg/dL and anti-thyroglobulin at 0.5 U/mL. In the mean time I had all kinds of weird syptoms (symptoms)...major brain fog or confusion, muscle aches, stomach problems, swollen stomach, weight gain (only 10 pounds), cholesterol higher than it's ever been, out of breath, muscle weakness, wrist pain, sole of feet pain, etc. I found a doctor on line who lives and works 440 km. from me. I wrote him an email and he claimed that he understood me and that I should go see him. He's a 70 yr. old man and he knew about Mary Shoman and other doctors. He did all kinds of tests and the results were TSH at 2.4 mcU/ml, Free T4 at 1.4 ng/dl, Thyroglobulin antibodies at 84 UI/Ml and TPO antibodies at 72 UI/ml. So my antibodies were both above range and he said that I had a discreet interticial infiltration and little granules were seen in the ultrasound. He put me on 25 mcg of Levothyroxine but I had heart palpitations that bothered me so he told me to start out with 1/2 the tablet.

The end of May I did another blood test for the iron and my whole iron was at 42 and my ferritin at 17. I was told to take it again for 2 months. I really didn't start feeling real well until June and as my husband said, I didn't look as swollen. By August I was running again! Although several hours afterwards I would be dead tired and didn't have any energy! I stopped the iron treatment after 2 months and in Sept. the doctor said that my blood test was perfect with my ferritin at 22 and my whole iron at 63. She said that I didn't need any more iron and that I definitely didn't need to be treated for any thyroid problem (she had said that from the beginning when I should her the other doctor's report).

In November I started getting the muscle aches again and I was feeling real tired. My TSH and Free T4 tested normal and my ferritin was at 12 and my whle iron at 78. The internal medicine doctor said that I didn't need any iron that maybe some antidepressants would be good. The endo 440 km away said for me to up my dosis to 37.5 mcg. I tried but I don't feel comfortable with my heart. I am now taking 25 mcg of Levothyroxine.

This last week I went to a GP and he said that my blood tests from November were fine and that my ferritin level at 12 had no importance. He suggested doing a psychiatric evaluation since he saw that I got emotional and tried to tell him that my ferritin was low. I did get him to prescribe me iron, although he told me to take it only 3 times a week.

I don't know if I'm doing the right thing or not! It's so frustrating trying to find a doctor who will at least listen to you! I also want to look into doing a diet for Candidiasis (yeast infection) since I always seem to have yeast infections. I figure that I don't have anything to lose giving it a try. I've read that Candidiasis also has the same type of symptoms as hypothyroidism and low ferritin. Who knows what's going on?! I'm determined to find out!    

[stella5349]

You certainly went into a long history - that is good - you are following your treatment!

You question on Hashi is difficult - You do not have any testing on the antibodies - so it's hard to say for sure.

You need those tests. What is your TSH and T4 levels? I do not know the procedure for testing in Spain - but it should be the same as here in the states.

Can you have them test your TSH - Free T3 and Free T4's with a TPOab and a Thyroglobulin test? Those last ones should indicate Hashimoto if you have it. These Free Testings are pretty important and in some cases if your Free T3 is low - THEN you know why you feel pretty bad.

You are experiencing classic symptoms of Hypothyroidism - yet these symptoms can be a combination of other things too. You need to pin point it as you said you are following through with doing.

This doctor has to work with you no matter what - or find a new one.

As for the psych stuff - I am not buying that - it sounds like the doc is trying to sway off from looking for something really wrong.

Let us know what you find out.

[marilis]

Sorry about boring everyone to death! I just wanted to see if anybody can relate to what I've been going through.

Yes, my thyroid antibodies are  higher than they should be, although my TSH amd Free T4 are normal.

[anca77]

You mentioned you have EBV (Epstein Barr Virus). I do have EBV, Hashimoto and Hypothyroid and I believe it’s a connection between these, if you have EBV you can develop Hashimoto, as both are autoimmune disease, and Hypothyroid.

My symptoms were similar with yours. I got better once I start the treatment for the Thyroid.
You should talk with your doctor and see what he recommends as a treatment for the hypothyroid.

My doctor’s recommendation was that my TSH needs to be close to the lower range, because of the Hashimoto, and he was right. Even when my TSH was in the upper range I was still having strong hypo symptoms.

You can also check the forums for EBV and for the Fibromyalgia/CFS as you can develop Chronic Fatigue Syndrome once you have EBV.

[marilis]

That's really interesting! I didn't know that there could be a link with EBV. The funny thing is that I don't know when I got it!

It's also nice to know that somebody else's TSH needs to be in the lower range. That's what my endo insinuated.

Thanks!

[anca77]

One mort thing I did not mention, I start taking all kinds of vitamins, like Coenzyme B Complex, B12, Selenium, Magnesium, Vit C, Calcium, D3, Code Liver Oil, Borage Oil. I was taking vitamins before, but in the form of multi, now I take each one by itself and I alternate them.

[Barb135]

I see your TPOab at 72 - what was the range used by the lab?  The upper end of the range on mine was 35 - and I do have Hashi's.  It would appear that you might also - what did your endo say? Was that his dx?  Would be good if you could get current TSH, Free T-4 and Free T-3.  

You might also want to have your vitamin B-12 levels checked.  I have pernicious anemia and some of the symptoms are similar to hypothyroidism - mainly the fatigue, etc.  

I don't buy the pshychiatric dx either - sounds like another way to lump all your symptoms into one neat little bundle and it just doesn't usually work that way.  

Is there any way that you can sort of stay with just one doctor?  Sounds like each one of them is telling you something different, which must be very difficult to keep up with.  

[estrelinha]

EBV isn't an autoimmune disease, it is caused by a virus ( herpes family) and it affects B-cells but there is evidence associating the Epstein–Barr virus (EBV), to systemic lupus erythematosus (SLE), rheumatoid arthritis (RA), and primary Sjögren's syndrome (pSS).
You have positive tyroid antibodies, looks like your developing an autoimmune diasese of your thyroid. First you should had seen if your TSH (it was 2.4, which is normal) was raising before taking meds (that's why you become hyper)., but now perhaps things are different, you're becoming hypo and may be you need adjustment of your medication. With a high titer of EBV IgG, means you had  mononucleose (past or recent past) and the positive IgM means recent (have you tested for liver enzymes?). Some of your symptoms can be related to the EBV infection (Chronic Fatigue Syndrome)  and anemia, your ferritin is still low (what about your hemoglobin?, full blood count and smear?)
In my oppinion you should continue to take iron supplements, it takes months for your ferritin to be 50 (not a rule, but a good number), ferritin of 12 is to low (low normal range). You should check for other autoimmune diseases, you said your Rf was positive, so you must look at it again.  At the same time find a good ENDO (for your thyroid disease).

[marilis]

I am be treated with 25 mcg of Levothyroxine which I'm supposed to raise gradually to 37,50 mcg (I say gradually because it gives me heart palpitations). I'm also trying to regulate my ferritin. I do take a B complex vitamin and I tried Selenium briefly in the past but thought that it might not work out well with the Levothyroxine. How much do you take of each vitamin and mineral and how often?

Do you have any possibility of having Fibromyalgia and/or CFS? I'd rather stay as I am than get either of those!!!!  

[marilis]

My TPOab was at 72 UI/ml and my Thyroglobulin ab was at 84 UI/ml. Both of these said that the range was up to 50. My endo says that I am just starting with Hashimoto's. My TSH and free T4 are normal and always have been, although during the process of blood tests and trying to get a diagnosis the TSH was gradually going up. Is it normal for a TSH to fluctuate up and down?

Nobody has checked anything like the B12.

The reason for all the different doctors is because nobody would listen to me where I live (in a town of 55.000 people and where I don't trust the medical professionals at all!) so I found this endo online and went to see him. He is 440 km. away but permits me to get bloodtests and then call him so we can talk about any type of ajustment in the medicine, how I feel, etc. I need to have a doctor where I live in order to get the bloodtests done and to deal with something like taking iron (my endo said to just take iron since my ferritin was low! I think it's a bit more serious than that!) So, with some things I kind of have my doubts about him! However, the endo is the only one who has listened to me and didn't think I was psychotic!

[marilis]

My hemoglobin and hematocrites have always been fine. I've never had a blood smear and I don't know if I've had a full blood count. I'm not sure if I've been tested for liver enzymes but no tests special tests were asked for after getting the other results back.

As of last spring my Rf was in the normal range.

I agree to keep taking the iron, although I don't know if it will help taking it 3 times a week. I do want to find a good doctor, but I don't even know where to start! My sister-in-law, who lives where I do, has an obvious thyroid problem and has been treated in the past and then her doctor said she was fine and stopped her treatment! There aren't any decent endos where I live!

[Barb135]

I guess I'm not sure what he means by "starting Hashimoto's" - I thought you either had it or didn't, but then I'm still relatively new at this whole thyroid thing so I could be wrong.  If your TSH was creeping up, you could be becoming hypo and if you are currently on levothyroxine, that should help keep it in check, but it bears watching closely.  A lot of doctors, mine included, adjust meds based on just the TSH levels, but you also need to get Free T-4 and Free T-3 as well.  If you can't tolerate the levothyroxine, there might be alternatives - check with you doctor.  

I'm not familiar with the iron problems you have, so I'm sorry I can't comment on that.  It would seem, though, that there should be some type of medical supervision when your levels are off like that.  

I'm told that selenium can help with Hashimoto's and that it will affect your med, but I know that some vitamins need to be taken several hours apart from thyroid med as they inhibit the absorption.  I've tried selenium and it did seem to calm things a bit for a while.  

I'd still recommend that you get B-12 levels checked if possible.  

[estrelinha]

You can take the recommended those everyday until your ferritin gets higher, but you must regulary control your ferritin levels (every 3 months). Have you tested for C reactive Protein? It's time for you to test your TSH, free T3 and free T4 to see how are you doing with your medication, what were your last TSH and free T4 (in November)?

[anca77]

This is what I take - after lunch: Selenium 200 mg, b12 1000 mcg, Coenzyme B Food Complex, Chromium Picolinate 500 mcg, CoQ10 400 mg and before bed I take Vit D3 1000, Calcium 12000, Magnesium Asporotate 400 mg and sometimes I take Iron.
Except for the vit. D and Calcium, which were recommended by my doctor, the rest are my decision.  
I know the Calcium and Iron should not be mixed with the Thyroid medication, it’s way I take them at night and also I realized Magnesium is helping me sleep better.
There are days when I take Norwegian Code Liver Oil (Carlson - not the pill) and Borage oil, morning and night.

I use to take all these in a daily basis, now that I got better there are days when I skip taking them, however I still try to take the vit D and calcium regularly.

Before I used to be on Levothyroxine 75 mcg, it did not work for me. My new doctor switched me to Synthroid, he somehow trusts more the brand name medication vs the generic. I also used to take the vitamins in the morning, close to the thyroid medication but I switched to avoid any interference.

One more thing, you should not eat for one hour after you take the thyroid medication.

I told you I also take Armour but as I take it sublingually, it does not interfere with any other medication of food.

[estrelinha]

For the best absorption of both iron and calcium, it is recommended to take your calcium supplement 2 hours before or after your iron supplement. You should not take them at the same time.

[anca77]

Thanks for the advice, I did not know the calcium/iron restriction.

[marilis]

Hi. Just to get back to everyone, considering that we come to these forums when we feel bad and maybe forget to tell about the positive things.

I just wanted to say that I've had a wonderful year this year and I feel great! A year ago Mary Shomon recommended going to see a few doctors and I ended up going to one in the states. It was wonderful because she listened to me and understood my frustration (she herself is hypothyroid). She added to my levothyroxine: T3, vit B12, vit D, Zinc, a multivitamin, low dose iron, magnesium and progesterone for 1/2 of each month. I feel real good! My muscles don't ache, I have a lot of energy, I've been working out, I've been able to work 2 jobs plus the house, etc. and I feel happy!

I do have to say that since Sept. I am feeling a bit more tired. The doctor told me to try and raise the T3 so we're in that process, seeing I how feel with it and to see how the blood work comes out. However, I think that I'm also dealing with perimenopause at this point plus several external high emotion factors going on right now.

All in all, though, I feel good!!!!! :-)

[redheadaussie]

Hi marilis! I just wanted to say , thanks for coming back to the forum and posting how you are now. It really does help people who are thinking that there is no hope.
It is fantastic that you found a doctor who understood your problems and dealt with them.
I hope you stay well!
Cheers!