Hashimotos

[VidPid]

I have recently been diagnosed with Hashimotos. My doctor then sent me for a scan on my thyroid and apparently it looks like I have Graves from the scan? My thyroid is definitely under-active though, does anyone know if this is normal?
Also, he's now sending me to see a endocrinologist. Do they always send you to see a specialist after diagnosis? I'm just trying to figure out what is normal, they won't give me any medication until after this and I'm really struggling at the moment.

Hi VidPid. It's scary isn't it? I have Hashi's, but I know a few folk with Graves. You can have both at the same time apparently, but I don't think one can tell that from a scan, I may be wrong though. They're usually diagnosed by the presence of particular antibodies.

Hashimoto's is an autoimmune disease where you produce antibodies that specifically attack your thyroid, and will continue doing so until they destroy it. This isn't good news for anyone as the thyroid is involved with so many of our body's systems, but it's pretty common, especially in older women (but can occur in far younger people too). Graves and Hashi's are opposite ends of the thyroid spectrum. Hashi's goes with an underactive thyroid (but you can experience flare ups where you can exhibit hyper symptoms), and Graves is an overactive thyroid. It's important to be clear which you have, as I said, antibodies need to be tested and they're very specific. Treatment is different depending on that, so you need to know.

Not everyone is sent to an endo, depends very much on your circumstances. If you do have a more complex condition (such as Hashi's/Graves together) then a GP may not feel they're experienced enough to treat it.

If you'd like more moral support and explanations I recommend the Thyroid Patient Advocacy forum, the people there are very experienced and will help you understand what's going on, and what questions to ask and so on.

Thank you so much @CrunchyCarrot.

They have tested my antibodies and said they were 'very high' but didn't say what illness they pointed to. Yet they also said my thyroid levels were only slightly under active.

I'm only 22 and I've been ill for about six years. I'm hoping they can give me medication soon

Aww that's rough to have it at 22 yrs old. Thyroid levels can swing about a lot during antibody attacks, unfortunately doctors are fixated with lab values and less bothered about going by how a patient feels. Lab values don't always express just how poorly a person can feel. I felt dreadful yet was diagnosed 'subclinical' which makes the condition seem mild!

I hope you get a decent endo to oversee your treatment.

Thanks again @CrunchyCarrot, your support has really helped. I don't really have anyone in my life who has this!

I had antibodies of 180, TSH nearly 8, and because my free thyroxine was just in the normal range my GP wouldn’t treat me. Luckily I had access to private treatment but now I am pregnant it’s back to stupid NHS guidelines. I feel so awful now they are letting my TSH levels slip back. Felt amazing when I was at the 2.3 mark.

That's dreadful @Teddybear45, you should have been immediately started on a trial of Levothyroxine. Doctors are so ignorant when it comes to thyroid matters! I feel at least fortunate to have been diagnosed with a TSH of 4.95 with normal T3/T4 levels, based on my antibodies and the fact my mother had Graves'. Honestly I despair over the state of health treatment for thyroid illness in this country.

I'm so sorry this is happening to you. I had symptoms from my teens but no dr would take me seriously until I was 30!!!!

In my 20s I had a lot of panic attacks which in hindsight were as a result of the burn out the thyroid can suffer when under attack.

I believe in the early stages of hashis you can also have symptoms of graves. Can lead to some awful symptoms.

Best advice I can give you is

• always get a copy of your blood test results and plot them into your own tracker

&

• read up on your disease so you can be your own advocate.

Stop the thyroid madness and hypothyroidmom are both great websites and blogs. Also link to others worth reading. The root cause by Isabella weiz is also a great book and blog.

Also consider joining the U.K. thyroid patient advocate group - TPUK - think you can find it via healthunlocked forum.

Best of luck. If you feel crap push for treatment. And always remember tsh is not the only number to be aware of. Stop the thyroid madness has some good information on what "optimal" is and how it differs to the dr's "normal" and what you should be looking for.

Also check out your vitamin d levels and consist a supplement. I also take magnesium. Helps me sleep!

Oh and medichecks is a great resource. They do blood tests. Every Thursday they have "thyroid madness" offers on their thyroid blood tests. I use them so I can track my own health as my dr does not do all the tests I need to keep track of how well I am.