The doctors cant even help can anyone please help me?

[TattooGurl]

I've been suffering from Hypothyroid for over a decade now and I've been on the Synthroid since they found it. It helped mostly I never felt %100 again but it was a lot better then how I was feeling before. Back in 2010 things began to change again the symptoms all came back but even worse this time I put on over 100lbs in less then three months my hair, nails and skin dried out so badly I started losing them hair and nails I mean and my skin was so dry it was splitting open because I was gaining so much much weight and my skin was so dry it couldn't handle it now I'm covered in major scars. I've seen nearly half a dozen doctors since because they kept sending me to see one doctor at one clinic then they would send me to see this other doctor at this other clinic they even sent me to see a doctor in another city 3 hours away and had more tests then I can count.

One day everything seems "normal" the next day my cortisol and ASTH are not even detectable and my prolactin levels are sky high then by the next blood tests everything is back to normal light nothing it wrong My TSH and T3 and T4 levels never change no matter how low or high they change my Synthroid dose to and lastly my Insulin levels are around 720 with a normal fasting glucose.

I have had 3 MRI's which showed no masses on the pituitary gland I do however have three large nodules on my thyroid which do cause a lot of pain horse voice and choking that are apparently not in the way according to my last surgeon even tho I feel like I'm being stabbed in the neck all the time.

I'm always tired, weak, sore, lazy, grumpy, dizzy, confused, sweaty, constipated, cold, dry hair skin and nails and I always have  massive headache. I take my synthroid and metformin every day I'm Canadian so I can walk in to any doctors office any time and get as many tests as I like for free if anyone can give me any insight that me or my last 6 Endocrinologists haven't thought of I would be forever in your dept.

[TattooGurl]

I read it and it sounds annoying for her but my problem is rather different for one I'm not on the Armor I was back in 2006 for about a year I heard it was better for you to be on the natural thyroid hormones then the synthetic one. It really had no change from the Armor to the Synthroid except almost a $50 difference in the cost so I switched back to the Synthroid and I have been on and off the Metiformin since my diagnosis and to be honest with or without the metiformin I feel no different. The only reason I take it is so I won't get Type 2 Diabetes and it's more then my thyroid hormones that are off it's my dang pituitary as well. All my hormones fluctuate wildly through out the day but I'm never ever Hyper I am always Hypo. I will talk to my doctor about Thyroid Hormone Resistance. I cant take this much longer is 76 degrees in my house and I'm wearing a big sweater and have a blanket on me and I'm still cold.

[goolarra]

You might also check out grantj's story (in her post of 8/27/11) regarding her experience with metformin and thyroid meds:

http://www.medhelp.org/posts/Thyroid-Disorders/Getting-Armour-out-of-your-system-how-long/show/1582177#post_7187955

[goolarra]

Lots of us are on T4-only meds, like Synthroid.  When the drugs are "doing their job", your levels are optimal, neither too high nor too low.  For FT4, that's usually about 50% of range; for FT3 50+%.  Since your FT4 is at 71% of range, we'd really expect your TSH to be much lower than it is.  That's an inconsistency, so it might be a place to start digging.  Many of us would have hyper symptoms with FT4 that high.

You might look into THR (thyroid hormone resistance).  People with THR have to have FT3 and FT4 levels very high in order to eliminate hypo symptoms.    

[TattooGurl]

I'm on Synthroid so of course my levels are going to be higher just the drugs doing their job and the last antibody test was in 2008 so I cant get the results online only my most recent but I have been told many times that Hashimoto's is not the cause of my thyroid problems we've been trying to find out the cause of it for years since none of my blood relatives have ever had it.

I was diagnosed with my thyroid problem in 2004 in 2002 I was diagnosed with the insulin resistance I was on the metiformin till 2005 when my insulin levels got normal again I then stopped taking the metiformin.

In 2009 I quit smoking everything was fine for months then in 2010 I started gaining weight, losing my hair and everything went wrong it wasn't until 2012 I started taking the metiforin again with my insulin levels at 720 of (15 - 20) and no there is nothing else I can take I've already asked since the metiformin makes me violently ill most of the time.

I also should have said I started getting Hypothyroid symptoms in 2002 had the TSH tests a few times and they all come out normal. It wasn't until two years on the metiformin and my insulin leveled out they were able to find the thyroid problem. This is why I'm here because even the highly trained Endocrinologists can't figure it out.

[goolarra]

It's interesting that you have hypo symptoms, yet your FT4 looks actually a little bit high at 71% of range (50% is the target), and your FT3 is at 67% of range, right at the lower end of the upper third.  It's kind of surprising that with both those numbers on the high side, your TSH is also high.  Apparently, your pituitary wants your levels higher.

Metformin does cross the blood/brain barrier and accumulate in the pituitary.  So, with TSH, ACTH and prolactin all doing odd things, I'd have to wonder about that first.  Is there something else you could take?

Quitting smoking can precipitate hypothyroidism.  Do you have the antibody test results with reference ranges?  

Your FNA should have been able to determine definitively if you have Hashi's or not.  

[flyingfool]

While some people are gluten sensative or allergy, and cutting back or eliminating gluten make them feel better.  There is little to no scientific evidence that suggests that gluten has any affect on thryoid levels at all.  There is some limited evidence that cutting back gluten may, may reduce the antibodies numbers for Hashimoto's.  But even that is inconclusive.

That being said. If youcut out gluten and you feel better then by all means go for it!  It is certainly worth the try with little to nothing to lose.

[Klaraj7]

Hi. I have the same issue with my thyroid. It is very hard but if there are a lot of ways you can help your system work better. The most important thing is diet change. A lot of people who have hypothyroid have a severe gluten allergy. You don't have to be completely gluten free, but you should try as best you can. Also one thing that has helped me a lot is Cortisol. I take half a pill in the morning and it evens out my hypothyroid so I am not tired all day and up all night. I have taken Synthroid and dozen of other meds and it only makes the problem worse. Also there is a naturual supplement called Lola. It helps detox you and regulate your hormones. It is a naturual mineral and has no bad preservatives. It also helps with inflammation and stabalizes your body. Good luck.

[TattooGurl]

I don't really eat gluten or soy, no sweetes, fast food, no coffee I don't drink or smoke and being Canadian a lot of those "natural supplements" are illegal here.

[goolarra]

Please start by posting recent thyroid labs with reference ranges.  Ranges vary lab to lab and have to come from your own lab report.

Do you know if you have Hashi's, i.e. have thyroid antibodies been tested?

What are you taking for thyroid meds?  Did the return of symptoms occur at about the same time you started metformin?

How large are your thyroid nodules?

[TattooGurl]

Last results were, AM cortisol 59 of (120/620) nmol/L, Free T3 5.5 of (3.5 - 6.5) Free T4 18.9 (9.0 - 23.0), TSH 3.85 of (0.20-4.00), ACTH 5 of (10 - 46) Prolactin 28.5 of 25 ugl,  those were the only recent ones I could find in my records. Problem is that the numbers from one week the the next can be totally different one week my levels are 100% normal the next there way out of control. Yes I have had the Hashi's test came out "inconclusive" but 6 different Endo's agree that there is no Hashimoto's. I've also had testing from for Addison's again negative my adrenal glads are functioning as they should be even tho I have low cortisol it's due to the patuatiry and my ACTH.  My thyroid is thickened and enlargened by 6mm on the right lobe only there is a 12mm by 10mm by 10 mm and one 8 x 8 x 7 and the therd is 13 x 11 x 12 last biopsy was December 2015 no cancer found, Had a MRI the same month no deformity's seen on the pituitary . I have been taking the Metiformin for two years longer then the Synthroid my Insluin resistance was found before the Hypothyroidism. I take the standard Levothyroxine at 0.075mg I have had it as lot as 0.025mg and as high as 1.50mg with zero changes to my TSH, T3 and T4 the symptoms started out of nowhere the only thing anyone can think of was I had quick smoking 5 months before. Hope that answers your questions.