Thyroid hormones ....

Sorry guys, this isn't strictly HPT related but it fits in the bigger picture....

Nelly and Edwin, I know you're both whizzes when it comes to thyroid issues and understanding the science, which confuses the heck out of me, so I was wondering if I could pick your brains.....? I had a thyroidectomy way back in '96 for Graves', I've since been on ever increasing doses of Levothyroxine, currently on 200mcg daily. Over the years my (idiot) GP has only ever tested TSH values, insisting that there's no point in doing T3 and T4 as I no longer have a thyroid (well, my understanding is that 9/10ths of it was removed). When I last saw my endo Miles Levy a few weeks ago he did a full blood panel including T3 and T4; I had a copy of the results just before we left for our hols which showed them to be elevated, and today I received a letter from Dr Levy (I'm seeing him again on 14th Aug) stating that there is a slight abnormality with my pituitary MRI, although nothing to worry about, but there is a subtle rise in my thyroid hormones which doesn't fit the clinical picture which we will discuss when I see him next week.

Any thoughts? Could it be related to abnormal pituitary function?

Jasmine x

Have you got those results Jasmine ? not easy to comment without the numbers. 200mcg is quite a hefty dose so if your T3 and T4 are elevated and above range it could just mean you are on too much Levo.

You do need free T3 and T4 tested so your GP is an idiot, testing T4 & T3 will show if you are on too much Levo

TSH comes from the pit gland so Mr Admin says that if you have an anomaly in your pituitary then TSH result alone could be unreliable.

If you have the numbers and want us to take a gander then do post and we might be able to help more.

Nelly

Hi Nelly

Thanks for your input, much appreciated.

Just looked at the results again and he didn't test T3 as I thought (grrrr! Brain fog ...) it was Free T4 and TSH:

Free T4 - 26.17 (range 12-22)
TSH - 0.580 (range 0.270-4.2)

I also got some gonadotropin results which I can't make head or tail of so will have to wait until I see him.

Jasmine x

Do you have any hyper or hypo thyroid symptoms?

I am thinking of two possibilities:

a) you could be hyper on 200mcg, in which case you are likely to experience feeling jittery and palpitations, or

b) you could be hypo on 200mcg if you are not converting T3 to T4, in which case there are many symptoms including: feeling inner cold/shivering, brain fog, difficulty concentrating, tiredness (especially in the afternoon), dry skin.

Your FT3 and FT3 blood results are so important when a "normal" dose of Levothyroxine (typically in the range 75mcg - 125mcg) does not seem to be working.

Your GP should have been suspicious of your TSH results if they indicated a need for such a high dose of Levothyroxine.

Edwin

Jasmine2 wrote:Hi Nelly

Thanks for your input, much appreciated.

Just looked at the results again and he didn't test T3 as I thought (grrrr! Brain fog ...) it was Free T4 and TSH:

Free T4 - 26.17 (range 12-22)
TSH - 0.580 (range 0.270-4.2)

I also got some gonadotropin results which I can't make head or tail of so will have to wait until I see him.

Jasmine x

Hi Jasmine

Your Free T4 result is definitely too high, indicating too much Levothyroxine and you are likely to have hyperthyroid symptoms, unless you have a T4 to T3 conversion problem (which is relatively rare).

One thing to bear in-mind is that any change in Levothyroxine dose takes up to 6-weeks to take effect, so any blood test within this 6-week period is unlikely to give a meaningful result.

Edwin

I have a lot of hypo symptoms Edwin as they are very similar to hyperPT so it's hard to distinguish. Re hyper, I never did have many of the usual symptoms of Graves' originally, apart from anxiety and exophthalmos and lid lag in one eye, and it was really that plus bloods that made the original diagnosis. Similarly now, I do get the irritability, tiredness, palpitations etc but it's hard to tell if it's thyroid or parathyroid as my calcium and PTH are still up. I've been on this dose of Levo for a couple of years now.

Thanks for your input Edwin, it will be really helpful to have this little bit of understanding when talking to my endo next week.

Jasmine x

Symptoms of overmedication can be the same as undermedication so it is oh so common for people to think they are hypo and need more Levo when actually they are hyper and need less Levo.

Been there and got the t-shirt. I was on 150mcg and convinced i needed more but i am now on 100mcg and no problems.

Nelly

Thanks Nelly, all good info to make a note of for my appointment. Really appreciate your wisdom....

J

You may well find on a lower dose some symptoms go away as they could well be non hpth related.

With thyroid levels many people do better with a TSH around 1 T4 in the upper half and T3 around mid range. Of course we are all different so need different doses.

This might be a really stupid question but is it possible to get Hashimoto's thyroiditis even though you've had a subtotal thyroidectomy, with just a small piece of thyroid left in place?

Jasmine x

Hashimoto is inflammation of the thyroid caused by antibodies so I guess if you have a tiny bit of thyroid left then it could become inflamed but it is possible that what you have left has shrunk to nothing. I had partial surgery in my teens and the surgeon couldn't feel any thyroid at all.

The antibodies you have with Graves will still be there and they can become active again if triggered.

I always know when my antibodies are active because I get itchy eyes.

The symptoms are the same as non hashi thyroid disease as is the treatment. 

What makes you think hashi ?

Nelly

I don't know really Nelly, I think I'm just clutching at straws. It's thrown me a bit suddenly having thyroid thrown into the mix after all this time, and I just want to get it resolved so I don't have anything muddying the waters in trying to get the persistent pHPT sorted. Because there is such an overlap in symptoms I don't want the medics blurring the lines and fudging on the pHPT and saying "weeeell your symptoms could be thyroid related (which some of them may well be) particularly as they seem to want to pin the FHH badge on me which I'm certain it can't be as my calcium and PTH are still well up. Mine is such a complicated case and I think 'they' would be well happy to be able to attribute my debility to something not requiring a surgical cure.

Sorry Nelly, that seemed like a bit of rant - well it was a rant I suppose. I'm just so afraid of being fobbed off now that raised thyroid hormones are in the mix.

Jasmine x

Some of your symptoms may well be thyroid but they can't attribute high calcium and pth to that. 

I was in similar situation before i knew it was hpth, i was putting symptoms down to thyroid and the endo started going down that road but with thyroid levels "normal" and cal and pth still over range she had to admit it wasn't thyroid.

If your endo wants you to lower your levo dose it will take around 6 weeks for levels to change, by then you should be able to notice some changes in symptoms BUT it can take months for levels to stabilise and TSH can lag behind for a while.

Easy to say but i would try not to worry, see what he comes up with and go from there. Unfortunately thyroid things can be a slow process. Hang in there and if you want to run anything by us please do.

Nelly

Thanks Nelly, really appreciate your support.

Jasmine x

Sorry things have gotten even more complicated for you, Jasmine! Geez, were they not complicated enough before?!!

Just from what I have learned about thyroid issues, I would also agree that it seems you might be taking too much thyroid medication. I hope you can get that all straightened out, so you can at least stop dealing with that issue!

And it is very strange that you posted this today. I will be posting very shortly regarding my nephrology appointment today, and you will soon learn why I think it is so strange that you posted about thyroid issues today.    I will post on my thread for those who are following my case. It would just be easier for them to follow that way.

Audrey

Aw Audrey, I'm so sorry I completely forgot you had your nephro appointment, and I didn't wish you well! Look forward to hearing all about it on your thread.

Jasmine x

Hi Jasmine
I know nothing about Thyroid so I can't be of any help but I'm sorry you are having to deal with all of thus, it must make your brain hurt just trying to get it to make some sense. Hope you get some answers soon.
Audrey really interested in how your Nephrology appointment went I'm looking out for your post to see.
Lots of love Amanda xxxx

Jasmine
Ditto what Amanda said. Your high pth and calcium doesn't have anything to do with your thyroid although I have heard that thyroid problems can raise calcium slightly. I do think symptom are confusing when you have both issues going on. I hope you feel better soon. I give you some of Tigerlily cats           Kathi