I’m here again, please comment : As some of you... - Thyroid UK

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I’m here again, please comment

sarajuarez2912 profile image
12 Replies

As some of you all are familiar with my diagnos and my Specialist just called and said my TSH level was 6.11 and I know that’s hypo because of the level, well she said to go in next month for another blood work on my TSH level and if it stays again at the same level or hypo level then she will prescribe me medication for that, I’m wondering if I just might stay hypo and be treated for it with medication, but what about Graves? Could I still have the chance of going Graves? Thanks for reading, and Happy New Years!!!

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sarajuarez2912
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12 Replies

I am sorry not familiar with your diagnoses but I presume from what you have been saying you have hashis. Do you have symptoms of being hypo as well as having a raised TSH. It seems a shame that you need to wait another month for treatment.By Specialist did you mean an endocrinologist. I would rarely describe an endo as a thyroid specialist, most of them are only interested in diabetes. I dont think someone with hashis actually gets Graves but as your thyroid with hashis deteriorates you will produce varying amounts of thyroid hormone and there will be ups and downs.Hopefully others will correct me if I am wrong.

You may want to try an gluten free diet and when you go for your next blood test do so first thing in the morning before food.Also ask for your vitamin D, folate,ferritin and B12 to be taken.You also might want to try to get them to take your T3 as well as your T4 but good luck with that.

Rmichelle profile image
Rmichelle in reply to

Hiya mandy you can have both hashi and graves antibodies...i have both, yes agree with you that they are not specialists...lol, sara is from texas so she calls her endo specialist. Xx

in reply to Rmichelle

Don’t you call endos and other tertiary doctors specialists?

Rmichelle profile image
Rmichelle in reply to

Yes you are right, the correct term for a endo is a specialist consultant etc but most people on the forum would not personally describe them as a specialist as they have little knowledge on how the thyroid works-as you are probalby aware most endos specialise in diabetes.

Rmichelle profile image
Rmichelle in reply to

I surpose we are downgrading endo's as most do a awful job.😕

in reply to Rmichelle

Any kind of tertiary doctor is called a specialist here, though often you'd say "cardiologist" or whatever in conversation. Specialists are a different case as you typically need a referral from a GP to see one.

SlowDragon profile image
SlowDragonAdministrator

Do you only have Hashimoto's ?

Or have you also tested positive for Graves antibodies? You need TSI or TRab antibodies tested for Graves

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower antibodies

Ideally ask GP for coeliac blood test first

amymyersmd.com/2017/02/3-im...

chriskresser.com/the-gluten...

thyroidpharmacist.com/artic...

scdlifestyle.com/2014/08/th...

drknews.com/changing-your-d...

With Hashimoto's Levothyroxine dose should be enough to lower TSH to be under 1.5 and FT4 in top 1/3 of range

Rmichelle profile image
Rmichelle

Hi sara long time no speak eh, you have been fighting this for ages like me but again your specialist is failing to request your frees aswell, are you telling her your other symptons and how you are suffering? Do you still have to have a tsh of 10 in usa or is it over 3 like other countries? you can still get graves but not at the same time as hashimotos, i know ypur antibodies were postive for graves but did you also test for hashis? You cannot have graves when you are hypo at present but in the future possibly if your levels rise up much higher again. Im sure more experienced users will comment. Nice to hear from you lady.xx

ShootingStars profile image
ShootingStars in reply to Rmichelle

You can be positive for both Graves and Hashimoto's antibodies. It's rare, but you can have both Graves and Hashi's at the same time. The only way to know if you have both is by testing antibodies for both and if you have positive antibodies for both. Having both can cause the thyroid to swing back and forth between hypo and hyper, but not always.

There have been a few sad cases of people who have been misdiagnosed as having Graves when in reality they had Hashimoto's. Some doctor just didn't understand what can happen through the course of Hashimoto's, where in the beginning, some people are hyper for awhile. Their thyroid was just in the process of struggling with Hashimoto's and was having a surge of hormones at the time, which dropped their TSH to a very low point. In these sad cases, people have been mistakenly put on methimazole, which killed off their thyroid all too soon. Then they are forced into premature hypothyroidism, instead of allowing Hashi's to take it's course and slowly reduce thyroid function over time.

Rmichelle profile image
Rmichelle in reply to ShootingStars

I agree totally, i have both antibodies and also one of my other friends-they cannot run together at the same period of time though as it happens seperatley...still a pain in the ass though. Yes there are alot of misdiagnosing around by idiot endo's who will not test-i was one of those patients until recently when my endo said i had graves without being tested but it turned out he was right when my tsi was tested by another endo, luckily enough i had my tpo for hashis done at the request of gp but so many people here do not have the tests.😊

ShootingStars profile image
ShootingStars

Hi sara. Happy New Years, to you, too! Sorry, I am not familiar with your diagnosis either, so I went back and read some of your posts. It looks like over 2 years ago you were diagnosed with both Hashi's and Graves? Both are autoimmune diseases that cause thyroid disease. Each has their own specific antibodies. What were all of your antibody results and lab ranges for both Graves and Hashi's when you were diagnosed showing that you had both diseases, and what are your current antibody results?

You were put on the anti-thyroid medication, methimazole, for how long? I believe in previous posts that your TSH went way up almost two years ago, so you have been hypo ever since? Treatment for Graves is Methimazole. It basically kills off your thyroid and makes you become hypo, as you have discovered. If you have antibodies for both Graves and Hashimoto's, you can still have the antibodies for both diseases, but your thyroid will be rendered useless by the methimazole and you will be hypothyroid. In other words, you will go from hyper Graves and treatment for Graves, to hypo Hashimoto's and treatment for Hashimoto's. The only treatment after methimazole when it eventually makes you hypo is to take thyroid hormone replacement. After methimazole, some people need both T4 (levothyroxine) and T3 (liothyronine), not just T4.

Your TSH has been consistently high, right? If so, then you are now hypo and being hyper from Graves is probably a thing of the past. However, you can still have those Graves antibodies. Both Graves and Hashi's are autoimmune diseases and they both follow the same protocol: eliminate inflammation in the body to help reduce the change of autoimmune response. This is done by following a strict anti inflammatory diet. The autoimmune diet is gluten free, and going dairy and soy free is also recommended. Gluten, dairy and soy are all inflammatory foods.

Have you been taking levothyroxine at all for the last two years since you went hypo? According to your other posts, you've been consistently hypo with elevated TSH for almost that long. You should have been put on levo a long time ago once your thyroid slowed way down and your TSH went way up.

What is your doctor waiting for?? Why does she want you to wait another month? Your lab results show you've been hypo for years! Your TSH has been left too high for too long. Being left untreated for years is completely unfair, cruel and uncalled for. It makes no sense at all!

sarajuarez2912 profile image
sarajuarez2912 in reply to ShootingStars

Thanks so much, I certainly agree with what your saying. It’s been a long road full of trials with this sickness. Going on 3 years without working because the Endo or whatever she is specialist... wrote out papers stating I’m disabled for 6 months or until there is a change, but she did those notes if questioned by anyone I needed to turn paperwork into, really thanking God because it’s a miracle I’m still here with a roof over my head. It’s been hard, and sad that she questioned me asking how I’m able to have Medicaid to see her if not many women in my position have to he Medicaid I have to see her.... hmmmm I guess she is cruel in her little ways, since she has a good reputation as the best for anyone suffering with thyroid issues, now really, there’s no one here in this town who has the patience with you to try and save your thyroid as this Endo does, but I’m guessing she must not like me to help me as so many have stated, and no I tell you the truth many outer towners come here to go under her care, as she is the best their town and close cities don’t have Endos like her, she has been around since my Grandmom was alive, that was her diabetes doctor and her Endo. Thanks so much for the help, I really appreciate it.

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