Seeking advice

[Pam80]

Hi all. I'm just looking for a bit of advice, and to find out if anyone has similar stories. I developed a goitre about 16 yrs ago ( I was 19) and I've had my levels checked on and off for years but they've always come back within normal range. Yes, there are antibodies, and my gland is still swollen, but everyone ( consultants/GPs alike) tell me there's nothing they can do until the gland fails. I also have low iron, and have been through some times of depression, anxiety and weight gain recently. To re-cap, all the usual tests come back normal; yet there's antibodies, a goitre and some symptoms of hypo. Does anyone relate to this? Would medication help? Dietary changes? Any replies welcome and appreciated in advance

[Saggyuk]

It's best to post your results so people can advise if they are normal or not. Most GPs wont medicate until your tsh goes over range so unlikely much you can do about it unless you want to medicate yourself.

You can certainly get your own tests done and have a more in depth look by looking at your T3 levels etc. Also worth getting all your main vits tested - Vit D, B12, Folate and iron and getting them to optimal levels as what they might consider as being okay is often not so also good to post results on here. Do you know why you're low in iron? Do you get enough in your diet or do you have any kind of stomach issues?

Many of us with autoimmune conditions and thyroid issues find going gluten free has a big impact on symtoms and can lower antibodies etc. It's made a huge difference to me so well worth giving it a proper try but has to be 100% gluten free and for at least three months

Hope you get better soon

[Pam80 in reply to Saggyuk]

This is really helpful thank you. I'm gluten free right now; it made a difference to how I felt almost immediately. I've only been doing it for 4 weeks, but I'll continue.

I've just had bloods taken, so once I get the results I'll post them.

My ferritin was 7 just before Christmas ( lab range started at 15) and the heamaglobin was 115 ( lab range started at 120)

B bits were within range but towards the lower end.

I appreciate your detailed reply.

[Saggyuk in reply to Pam80]

B12 can cause problems if under 500 for some people so well worth supplementing yourself if you have any any symptoms of B12 deficiency. It is a water soluble vit so not so much a problem with this one if you take too much as you will just wee it out lol.

Just post again separately if you want advice on what to take for this.

Make sure you read up on cross contamination of gluten from coeliacuk website - things like changing your toaster etc to ensure 100% gluten free. It can take a few months to start helping your symptoms. My tsh takes three months to go back to normal once I've had a few weeks on gluten for example. I was always very anaemic before going GF and still am a little but only low ferritin levels, my blood count has been fine since so has improved this.

Although you may not be able to reverse your thyroid antibodies, it may help to reduce them and keep it functioning longer and help with all other associated issues. With your dietry changes, it's important to get a proper look at your intake of things and ensuring you are getting enough of everything and have a quick check to see if getting the right amount of iodine too.

Hope you feel better soon

[Pam80 in reply to Saggyuk]

Thank you.

[SlowDragon Administrator]

You can get full private testing done (GP unlikely to be able to test all these due to budget restrictions )

thyroiduk.org.uk/tuk/testin...

Many of us here have to get our own tests. Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. £99 DIY finger prick test or can pay extra for blood draw at local clinic

Both companies often have money off offers on- Medichecks run "Thyroid Thursday " offers

If you have raised antibodies this is Hashimotos. Very many of us find strictly gluten free diet helps.

You can either ask Gp for coeliac blood test first, (notoriously unreliable) or just try it for 3-6months )

[Pam80 in reply to SlowDragon]

This is such a help, thank you.

My ent specialist told me I don't have Hashimotos, as they'd only call it that if the hormone levels are off.

My tsh/t4/t3 are all normal range.

But, knowing I have antibodies, and being told it's very likely I'll develop ( their definition of) Hashimotos is concerning...

Currently GF and DF and it's working well.

Also trying build up iron through diet.

I'll investigate private tests thank you.

[SlowDragon Administrator in reply to Pam80]

Medichecks have good offer on today as its World Thyroid day

[SlowDragon Administrator]

Also this page on Thyroid UK discusses wether we should receive treatment if have high antibodies but normal TSH, FT4 & FT3 and have symptoms.....the obvious answer is yes

thyroiduk.org.uk/tuk/about_...

You say you have low ferritin, B12 & folate. Best check your vitamin D too.

All are commonly low with Hashimoto's

Glad to hear going GF is really helping.

[blondpalomino]

Hi, I'm surprised they didn't want to whip it out.How big is the goitre? I had mine removed 16 years ago,it was pressing on my throat,but they didn't wait until it failed before removing it.They said it was best to remove it once and for all. Someone else I knew who had one decided to wait (her choice), then it got really big and was more difficult to remove.

[Pam80 in reply to blondpalomino]

Thank you for your reply. I think they would take it out, if my levels started to change. Regardless of levels; I KNOW I'm not feeling great, so it's frustrating to be told the levels are fine...

I'm looking for a way to reduce the antibodies, I suppose. I guess that's the holy grail...

[eureka74 in reply to blondpalomino]

I've had a goitre since before Christmas, even though it presses on my windpipe and is uncomfortable, they say it isn't big enough to do anything about .

[blondpalomino in reply to eureka74]

Hi eureka, maybe things have changed since I had mine out.They don't seem to want to do many operations now unless it's an emergency.They aren't doing hips and knees at the moment,at least in my part of the country.

[Silver_Fairy]

Didn't the GP offer a blood transfusion/injections due to your low iron?

[Pam80 in reply to Silver_Fairy]

No; just over the counter pills and dietary changes. It wasn't until I started seeing a personal trainer, with a keen interest in nutrition, that I've started to look into this further. Changes to my diet ( going gf/df, upping iron and protein) have helped enormously so far. I've got some energy back!

[romy55]

My Thyroid levels were always normal but i developed a goiter, this was removed but thyroid levels still ok. A further goiter developed and i has this removed and because of size thyroid removed last August. Wished I'd found this site earlier. I now take thyroxine have some bad days but generally good since my dose increased and my neck is back to normal and scar healing well also since dose increased. Would I do it again, yes but I'd ask more before the operation