Am I hypo?

[Tamzin27]

Hi! My name is Tamzin. I have been reading all the messages in desperate need of some answers. I had a partial thyroidectomy in 2009 a couple of months after giving birth to my daughter. I had multiple nodules that came back as benign after the operation. Apart from being tired, I never needed any medication. And I always put my tiredness down to having beta thalassaemia trait. Since February of this year(2016) I have felt more and more unwell. Both my kids had a bad chest and ear infections in February. I had a faint earache too. All my problems started during that time. After taking my kids to the doc, he checked my ears and said I an ear infection & prescribed antibiotics. Antibiotics didn't work, so he gave me a second different lots. During that time, the right lobe of my thyroid became more prominent & very sore. I was sent for an ultrasound and multiple nodules were found on my right thyroid. My TSH was then 2.1 and T4 12.0. My GP referred me to an endocrinologist and ENT specialist at my local hospital. ENT consultant has put a camera down my throat and he couldn't find anything wrong. He thinks that my symptoms are more thyroid related. I have been waiting to see an Endo from Feb and my appointment is next week (June). No FNA has been done yet. I requested for another blood test this month. TSH is now 4.1 and T4 11.0. Out of desperation, I sat down and did a graph and it shows that my TSH is going up and T4 going down. My TPO is 0.6 ( normal). I will post the graph in a bit.

Symptoms are:

Lump in throat, very very sore thyroid

Recurrent earache or infection

Very tired all the time, no energy

I have put on at least a stone & can't lose

Joint pain (wrists, knees, shoulders)

Numbness & tingly sensation in my right face and arm/ fingers

I'd like to know what you guys think. I will post a picture of the graph for you to have a better idea. Sorry for the long post. I am feeling desperate. Thank you

[helvella Administrator Thyroid UK]

That graph is exactly what you need.

It shows, beyond doubt, a steady progression in one direction: towards hypothyroidism. So very much more obvious than a column of figures.

I did exactly that with my TSH results. They started at about 2 and rose to just over 5. It was the graph that helped the GP be sure. Even then, he got another TSH test just to be sure (it was a teeny bit higher still).

Can you plot FT4 as well?

Maybe you could do a spreadsheet and then create a graph and print it out? (What you have done is fine - very clear - but it you add FT4, it will likely be less clear in pen and ink.)

I do not know anything useful about beta thalassaemia trait. But don't miss that you could be low in iron and B2 - just I wouldn't know where to start regarding any blood test results given that trait.

For me, starting levothyroxine and building up to what appears a sensible dose for me has helped with numerous symptoms - some of which you only notice when they go! Some are relatively silly things like hard, dry skin on the tips of my elbows.

[Tamzin27 in reply to helvella]

Thank you so much Helvella for your response. Yes, I have done the same for T4, but for some reason the website wouldn't let me add 2 photos. I will take the graphs to the Endo next week. Being a nurse myself, I'm feeling very let down by the NHS. I have been waiting for 5 months to see an Endo and I thought any nodules would have been biopsied by now. In 2009, everything happened so quickly, I didn't have a chance to think. I was seen by a consultant on a Friday and had surgery 2 days later. Noone ever explained anything to me. Guess I was naive and didn't know much about the thyroid. Now, that I am well clued up, I am ready to argue my points. I just feel like it's such a battle to find a doctor who will listen. I will try post my T4 graph but it's certainly going down.

[helvella Administrator Thyroid UK in reply to Tamzin27]

I know that statistically, we should have lots of nurses here. Nevertheless, we have had a surprising number who seem to feel as you do.

You cannot post two pictures on one thread. And putting it on another thread sort of loses the link - people have to jump between the two.

I suggest putting TSH and FT4 on the one graph?

Everyone is naive about thyroid until they realise they need to look further.

[Tamzin27]

I will put both TSH and FT4 on a graph. Thanks for your advice. I'm hoping for an FNA first thing, and hopefully Thyroxine. The best I've ever felt was when my TSH was around 1.0. So, I will aim to bring my TSH down and increase my T4. If only GPs could do the basic tests in the first place, it would save the NHS a lot of resources, money and time. And people like us would get a better treatment. Very simple! It's all about budget here. Anyway, I'll stop the rant now. Will do my graph and update my post. Thank you for listening.

[K1k1_belle]

Hi Tamzin, have you been tested for Hadhimotos Thyroiditis? It's sound as though your remaining thyroid gland is under attack!

[Tamzin27]

Hi! I thought so, but my Thy. Peroxisomal Abs came back as 0.6 IU/ml. No other tests were done. My GP said he has no budget for this. I hopefully will see the endocrinologist next Friday. I will push for more tests. My T3 hasn't been done yet. My Vit D is low, so now on Vit D 3200 IU a day.

[greygoose in reply to Tamzin27]

TPO is just one antibody test. There's also Tg AB. That just isn't done on the NHS, but some people - me for example - have high Tg and TPO in range. Worth getting it done.

[Tamzin27 in reply to greygoose]

Hi! Funny you mentioning this. I actually emailed the Consultant Endocrinologist I am seeing on Friday for the first time. After doing my own research online, I asked her to send me a blood form for the following:

TSH, FT3, FT4, TT4, TPO, TgAb

Reverse T3, Vit B12 (not active B12), Vit D (25 OH)

AND SHE DID! plus she's added LDH and Electropheresis.

I'm so pleased she's even read my email and posted the blood form. I'm going to have my bloods done early in the morning. Hopefully, should get the results for my appt with her on Friday.

By the way, I've updated the picture I added to my original post. TSH going up, FT4 down on the graph. I'm hoping she does an FNA on the nodules when she sees me.

Thanks for your advice. Great community.

[greygoose in reply to Tamzin27]

Very well done! Hope you have a productive appointment!