Hashis AND Graves!

[Traveldreamer]

So, I've just had a wonderful chat with my endocrinologist and thank goodness this forum exists is all I can say.

I developed a goiter and was told I was quite severely hyperthyroid in May/June last year. By September I was very hypothyroid and put on levothyroxine. I do eight-weekly blood tests and always ask for my printed results. Thanks to you lot I've been informed enough to demand antibody tests, vitamin tests etc.

Anyway I spoke to the endo in July and again today (March!!!) She was so apologetic as I should have been seen in September and I wasn't, then they cancelled my December appointment and postponed to April. (I moved it forward and decided I couldn't get stressed about this any more and decided on a plan to get regular blood tests.) She was impressed how I dealt with it all despite not getting the support I'd been promised. She was also annoyed with my gp being so ignorant to offer antibiotics for tonsillitis and statins for my high cholesterol.

Anyway I am waffling, but the long and short of it is I have antibodies for both graves and hashimotos. I am a rare case but not unheard of. Is anyone else in this strange situation and do you have any advice?

[Buddy195 Administrator]

Yes there are other forum members with antibodies for both auto immune conditions.

I first presented as hyper and then became hypo, but antibodies only show Hashimotos. More unusually I have TED (Thyroid Eye Disease) with Hashimotos, whereas most who present with this condition have Graves. I’ve learned so much from this forum and it certainly helps to reach out to others who understand & have similar experiences.

[Traveldreamer in reply to Buddy195]

Yes it does, especially when the GPs are clueless. It was so nice to talk to someone who knew stuff, anything, instead of me having to ask for certain things.Can I ask? Apart from the TED what other symptoms would you say you have with this magical combination? My moods swing like an ape through the trees and I wondered if this was a part of it.

[Buddy195 Administrator in reply to Traveldreamer]

Hypo symptoms- cold extremities, loss eyebrows (now growing back), aching limbsHyper symptoms- increased anxiety, higher pulse, restlessness,

[Traveldreamer in reply to Buddy195]

Ah, yes I have all of those, although I get the aches when I'm hyper.

[Buddy195 Administrator in reply to Traveldreamer]

I think a lot of symptoms are common to both hyper and hypo that’s why it’s important to check your thyroid blood levels.

At the moment I’m baffling my Endo as my recent bloods show over range T4 (accounting for increased anxiety & tremor) but I’ve got cold hands and feet (hypo? Possible Reynaulds?) I’m just glad I’ve followed forum advice to add medication slowly, as I was prescribed 20mcg T3 and 150mcg Levo on a 3 month trial- members here told me to first reduce Levo to 125 and start adding T3 in x 5mcg a week at a time. Ive recently felt over medicated on 125Levo & 10 T3, so have reduced the Levo (again, following advice here).

[Traveldreamer in reply to Buddy195]

I've not had or thought about the t3 to be honest. I did mention that it hadn't been tested recently, so that being done on Monday.This forum is a literal lifesaver and I just feel ecstatic I actually spoke to someone who knew what they were on about yesterday!

[Buddy195 Administrator in reply to Traveldreamer]

Definitely agree that this forum is wonderful; I’ve had great advice & support. I always post my blood tests and follow advice of knowledgeable members. As many GPS don’t test T3, I test privately (as many others do). Medichecks thyroid tests/ thyroid vitamins are often discounted on Thursdays if you want to do this too.

[SlowDragon Administrator]

What’s the treatment plan being offered by endocrinologist

Block and replace ?

Important to regularly retest vitamin D, folate, ferritin and B12 levels too

[Traveldreamer in reply to SlowDragon]

Well, currently I'm on 75mcg and 100mcg levo, alternating each night. I have to go for bloods (I asked for vitamin levels too) on Monday and she's considering a move down to 75 every night. She'll let me know via the docs, so goodness knows what will happen. But because she felt guilty I now have a direct number for her secretary as opposed to a seemingly unmanned email address. So if it all feels wrong I can get in touch. In answer to your question, I have no idea other than reducing my levo.

[SlowDragon Administrator in reply to Traveldreamer]

Have you had coeliac blood test Are you now on absolutely strictly gluten free diet

What vitamin supplements are you currently taking

[Traveldreamer in reply to SlowDragon]

No, no and none.Surely if I had /was coeliac, I'd have symptoms of that??!!

[Rush2112]

I have both graves and hashi plus ted eye disease I to get up and downs funny when I’m hyper I think I prefer being hypo when I’m hypo I think I prefer hyper my consultant said eventually my graves would burn out my thyroid and I would have permanent hypo that was 5 years ago

[Traveldreamer in reply to Rush2112]

Interesting. Yes, mine was saying something about having radiation therapy or whatever it's called and being on permanently on levo (which to be fair I thought I was anyway) . I need to do research before I jump that way though. Oh I'm as confused as before.

[pennyannie in reply to Traveldreamer]

Hello Traveldreamer :

Please do not go down the route of RAI thyroid ablation which is what, I think, you just refered to :

Loosing your thyroid to an autoimmune disease is a very big decision as you will still have the AI disease and might likely compound your health issues even further.

If you haven't heard of the Elaine Moore Graves Disease Foundation website please dip in, read up, and know what the real consequences of treatment options can be :

It;s not as simple as the NHS might encourage you to think :

All treatments can have consequences :

Living without such a major important gland, as is the thyroid, with very little help in primary care, which you have already experienced, seems a current problem for many of us.

Despite having lost your own thyroid hormone production, routinely, the NHS do not prescribe full spectrum thyroid hormone replacement and you will be discharged back out into primary care, classed as hypothyroid, and prescribed T4 - Levothyroxine only.

[Traveldreamer in reply to pennyannie]

This is a very interesting and important point. Thank you so much. I have seen posts to similar affect. I don't think I'd will gly jump into it. Thank you.

[pennyannie in reply to Traveldreamer]

Good - forearmed is forewarned - and you do need to be your own best advocate :

Graves is a poorly understood and badly treated auto immune disease - and believe it's given a medical priority over Hashimoto's :

[PinkLizzie]

I have been diagnosed Graves' now told I have Hashimoto's as well.

I was underactive for about 18 months and went overactive for about 10 months. Found I had Graves' antibodies and prescribed propranolol to calm my heart had bloods done prior to treating on block and replace and found I had also got Hashimoto's antibodies.

Current treatment;

propranolol 20mg 3 times a day

carbimazole 40mg once

levothyroxin 50mcg.

Apologies but had to cut a really long 3 year story short.

[Traveldreamer in reply to PinkLizzie]

Oh, so you're on what I would say are opposing treatments. I might be wrong there but it seems odd. How do you feel in yourself?

[PurpleNails Administrator in reply to Traveldreamer]

Block and replace is a more stabilising method. eg block thyroid function with higher block but then replace levels. It’s used when levels don’t balance (eg FT3 dominant staying high even when FT4 low) Or levels fluctuating unexpectedly which can often occurs with hashis/ graves.

[helvella Administrator Thyroid UK]

Just checking:

TSH receptor antibodies come in three "flavours". Stimulating - which are what causes the hyperthyroidism of Graves', also called Thyroid Stimulating Immunoglobulin (TSI). Blocking - which can cause hypothyroidism. And neutral which don't usually have much effect.

We sometimes see people who have some sort of TSH receptor antibody but have not had it proved it is TSI.

[radd in reply to helvella]

helvella,

Is the 'neutral' a result of the blocking AB's actions cancelling out the stimulating AB's actions or is this an actual third antibody? If so what is it called?

[helvella Administrator Thyroid UK in reply to radd]

As I understand - and this is entirely fanciful just to try to explain the way I look at it:

If you did a test for TSH receptor antibodies (total of all that can be detected) you might get a result of 10.

Then test for Thyroid Stimulating Immunoglobulin, and get 5.

Then test for Blocking, and get 3.

You still have 2 to account for...

These are antibodies that count towards the total but are neither stimulating nor blocking.

I'd be more than happy to be corrected if anyone knows differently.

[PurpleNails Administrator in reply to radd]

From what I’ve read TSH receptor antibodies (TRAb) Combines the measurement for - Thyrotropin binding inhibiting immunoglobulins (TBII) (blocking) & Thyroid Stimulating Immunoglobulin (TSI) (stimulating or activating) & the “neural” which don’t have a name other than neutral or sometimes abbreviated to N-abs for short.

It’s known the neutral antibodies are higher in those with thyroid Autoimmune but their function remains unclear. The theory is they may be involved in prolonging the TSH receptor half-life.