Advice needed please.

[Fourjays]

Hi everyone, I'm new here but not new to thyroid problems.

I went to see a gp yesterday for meds review and to mention a slight swelling in my throat. I knew he'd say it was a goitre but was shocked when he said I had the eye swelling signs as I'd not noticed this.

He seemed to think I am suffering Graves' disease but I'm being treated for hypo not hyper thyroid. I have more symptoms of Hashimotos disease when searching online.

I'm off to have bloods done and a chest X-ray today to see whats happening. Got to wait for a ultrasound scan on my neck.

I really want something sorted as I'm struggling to cope with everyday life due to tiredness and depression. I'm 37 but feel like 67. The old dears I work with have more energy than me.

[helvella Administrator Thyroid UK]

Welcome.

People can have Graves and Hashimoto's at the same time.

People can have Graves but at this time be hypothyroid. One of the more obvious times this occurs is when someone has had a thyroidectomy or radio-active iodine ablation but still has the antibodies characteristic of Graves.

It is not unusual for people to go from hypo to hyper and back repeatedly.

People can have Thyroid Eye Disease, Graves Orbitopathy, Graves Ophthalmopathy, or whatever other name you like, whether they are hyper, hypo or have never had any reason to question their thyroid hormone levels in their lives.

Not trying to push you elsewhere, but this site has more about TED/GO than does Thyroid UK:

tedct.co.uk/

Rod

[Jackie]

Hi It sounds as if you are having the right tests, for now. Make sure you have a tSH, T4 and Free T3 tests done, there other desirable tests too. I have hashimotos, it has been for many years. I t is normall to have an ultra sound and for the thyroid to be very enlarged with nodules ( like mine)biopsy by a radiologist under ultra sound. if needed. that is routine, and quite common I have had thyroid eye disease for any years, I see a good eye surgeon ( they are all surgeons). It has improved with the correct thyroid treatment but no treatment as such for it. but she tells me ,is a quite different disease, with an unfortunate name from when it was first discovered, She has lots of medical info stating this from eminent docs.. Also I would be sure to ask to see a good endo for the best treatment and they will do all the other tests. Types of thyroid disease never used to be defined but as long as the correct treatment to feel Ok and bloods Ok ,that was enough. Years ago no blood tests it all went on how the patient looked and felt.Your Gp sounds Ok but make sure by investigating about the endo before referral, often docs choice would not be yours. Like all walks of life there are good and bad.

You will get better but will take a while with a few bad times on the way.

With best wishes,

Jackie

[Fourjays in reply to Jackie]

I have no idea what my levels of anything are, always been told they were either normal or high. What should they be?

[Jackie in reply to Fourjays]

HI If you have the bloods done through the GP , ask for a print out from the receptionist. Make sure you ask for ranges too as they vary. The receptionist usually checks with a doc but normally routine. If a hospital then phone the consultants secretary and ask + ranges A lot of Labs vary.If you are not having the tSH , T4 and Free T3 done, you can pay through TUKthyroiduk.org.uk/tuk/re My NHS Lab will not longer do FT3 ( it must be Free T3 ,as there are others). My endo and i know FT3 is essential. I use Blue Horizon, on line, very easy, venous blood, which someone needs to draw for you,( details on thyroid site or main site) or finger prick. They are the same Labs ( TDL) who all the private hospitals use which is important as if you show them to a doctor for treatment they will want to know the Lab. If you quote TUK 10 for a discount for the intermediate test ( the 3) I pay £61.

I hope that helps. It always takes a while to be on the correct treatment and unfortunately some times a battle but you have to look after yourself.

Best wishes,

Jackie

[Heloise]

So you are already on thyroid meds when you say meds review? It's too late for me but when I started out as you, instead of putting me directly on a suppressant like PTU which later became full blown hypothyroidism, they should have tested whether I was iodine deficient or had autoimmune disease with which antibodies, or goiters which can also be internal from what I've read. But at least they are testing now. Don't take thyroid meds before your test unless you want to show a lower TSH.

[Fourjays in reply to Heloise]

Yes it was to review my dose age of thyroxine. Been on it for about 8 years.

Was increased to 125mcg in Oct due to one of my levels being high.

Mentioned that might throat had been swollen last couple of days and he said he thought it was because I was suffering Graves' disease.

My neck used to swell in my teens around time of the month, then it stopped, then I lost weight rapidly and had a 24hr urine test. Nothing was found.

After my last baby I suffered severe depression and one of the GPS noticed my throat and diagnosed me with under active thyroid.

Had my blood test but worried because I took my daily dose on the morning of the test. I have never been told too take it on an empty stomach, avoiding indigestion/calcium or not to take it before blood test.

My throat isn't to bad today but I'm really tired and emotional.

[Heloise]

This website has a lot of articles. I keep it handy: thyroid-rt3.com/backgrou.htm

Well, try to get a print of your latest tests. Your TSH must have been high for your meds to be increased. I think the website above has links to what the tests should be and where you should fall in the ranges with your symptoms. I think Thyroid disease is the scariest because it can change from day to day and so complex so you can be both hypo and hyper which leaves you in a total state of confusion. Try to hang on, there are some answers even if your doctor doesn't have them but maybe he will.