I found out today that I have Hashimoto's. I had never even heard of it before now so don't know too much about it apart from what I've googled. I don't want to google anymore because it was making me more worried. Would rather talk to other people in the same situation.
Apparently, it is not bad yet. I don't have any symptoms. I only discovered it through a blood test because we are TTC. My results today were:
Not really sure what those numbers mean except that there are antibodies attacking my thyroid, so my thyroid is having to work extra hard, but my thyroxine levels are still ok ATM. Right? The Dr said that I wouldn't need to go on medication yet, if I wasn't TTC. So she has given me the medication (50mg every second day).
I'm just a bit confused now. I asked if I would have to take medication for the rest of my life and she said no. But then later said that there's no cure and it will just keep getting worse??
I also asked if there was anything I could change that would help, i.e. diet, lifestyle, etc. She said no but I have read that a gluten free diet can help. Gluten does make me feel sick and I feel better off it so maybe that contributed and I could try going gluten free.
I just feel annoyed and angry and upset and worried now. Not really sure what it means for the future. I don't want to take medication forever!!
That is what I have, and my sister has too - yes I take thyroxine every day and will forever most likely - but it has no other effect on me.
I take 100mg every day and 150mg twice a week, I see the endocrinologist prob every six months to monitor my levels (so just have a blood test prior to seeing her) - we haven't quite worked out a maintenance level yet, is more difficult when breastfeeding as my weight is changing so it is more likely to vary.
Gluten won't have caused it, as far as I am aware it is genetic, an auto immune condition (my sister and I have this and my brother has Crohns - also auto-immune) and I would be surprised if there is a direct linkage between the two things at all.
Taking thyroxine every day is not so bad really, and really don't think of it as a medication but as a synthetic hormone it is just replacing what your thyroid is struggling to make - it is different to a medication really. I know some people take other natural forms of thyroxine (harvested from pigs I think) but that is a more expensive way of doing it I think.
A friend of mine had it and was on Thyroxine for a year or so and managed to get off it and levels have been ok.
She is a Coeliac and was told there was a link.
She is now preg with her 1st and levels are still ok.
I'm on 50mg one day, 100mg the next.
Appears I only have gestational thyrioditis at the moment, BUT I have since learnt an aunt had it when she was younger and now 40 years later has developed coeliac's and type 1 diabeties.
My mum also has bi polar from severe PND (different side of family to aunt) but all very interesting, as now my endo dr will prob keep me on the thyroxine and then more tests after baby is born.
My symptoms were:
Hair loss
Diarrhea
Racing heart
Tiredness
Insomnia
Dry skin
2 blighted ovums
Long menstrual cycles - 33 days plus
Appears mine went hyper then hypo.
Currently levels are good.
Try not to google too much, but it can help to write down symptoms daily.
Also the nature of it is a little different from low thyroid although that is the normal manifestation - so levels can flutuate moving you through being hypo thyroid and hyper thyroid. I can now tell if I am taking too much or too little thyroxine by how am feeling - but as is still shifting around 4 years after diagnosis dont think I will ever get off the thyroxine. The other thing the endo checks is my neck to check thyroid is not enlarged, and also reflexes using a hammer thing.
The Dr told me it is usually genetic too. Haven't found anyone in my family with thyroid issues yet though.
I guess I just don't like the idea that my body is not doing it's job properly and I will have to take this forever. That it will just get worse until my thyroid is completely wrecked and doesn't do anything. No cool thyroid, harden up!! LOL.
I have had problems with Gluten, not as bad as celiac, but it makes me sick and very bloated so that was in the back of my mind like maybe I triggered it by continuing to eat gluten anyway. I have read that it's usually a genetic predisposition and then may be triggered by environmental factors.
Have also read there have been some studies into different vitamins and minerals that found they reduced the amount of antibodies and improved thyroid function. Think I'll do a lot of research before I get checked again and then talk to the Dr about it, and my acupuncturist as well. Might be something I can do to help it a bit.
My TSH just came back today at just under 5. Lab wrote primary hypothyroidism. My endocrinologist has put me on 50mg thyroxine daily.
When I did an ivf cycle in Nov/Dec, a different specialist put me the same dose when my level was just under 3 (some FS like it as close to 0 as possible when TTC). I took it for about 3 months then stopped when I was hospitalised in mid-Feb (for other stuff).
Anyhoo, I was wondering what is the difference between hypothyroidism and Hashimotos?
Eta - interestingly, my mum is hyperthyroid and is wheat intolerant, my DD is currently being tested for celiacs.
Hashimotos is where you have antibodies attacking your thyroid, the last bit of Heavens results so your thyroid can be producing enough but then the antibodies attack it so has to make more - is something like that anyway. I think the two different antibodies they look for one is related to Graves and one to Hashimotos. Graves is worst from what I have read. I think most hypothyroidism is caused by Hashimotos. If you Google it there is a question on About asking same thing (that might get terminology right too) apologies I am on phone.
Yes, n2l, what wysiwyg said. Some people can just have an underactive Thyroid, if you have Hashimoto's the reason it's underactive is because your body is making antibodies that are attacking your thyroid. You are also more susceptible to other autoimmune disorders like celiacs. Did they test your T3 and T4 levels, and antibodies too n2l?
I saw my Acupuncturist last night and he thinks he can help. He says he has seen lots of people with Hashimoto's and underactive thyroid and has improved it a lot for them. He is working on my immune system to try and fix it up. I have also in the last few months started getting hayfever and a rash under my wedding ring. He thinks it's all related and my immune system really needs some work. Acupuncture usually works really well for me with most things so fingers crossed it can help here too.
Yay that's great news! I have a wacky thyroid with a multi mofular goiter on both sides and very low tsh but still normal. Pg always changes things for me too and my goiter grows (yuck!)
I have hypothyroidism/Hashimoto's. I was diagnosed when I was 17. I'm now 26. I was on 50mg but since being pregnant, I take 100mg everyday. Before this pregnancy I hadn't taken my tablets for months (then didn't want to just start again without knowing the correct amount). My levels were: TSH: 17 (normal levels between 0.5 - 5.5). T4: 2 (normal levels between 4.5 - 12.5). There was another one too which was ridiculously out of the range. I just have blood tests to make sure my levels are fine and readjust meds when necessary.
I posted a couple of years ago that I was slightly hypothyroid. I went on 50mcg thyroxine and all was good. However, late last November, I had my levels tested and they were terrible :/
My TSH went from 3.3 (in April) to 18.1 My T3 and T4 both fell to well below range. My cholesterol and triglycerides also shot up (a side effect of hypothyroidism apparently ). My hair was falling out and I was exhausted.
Anyway, My GP upped my thyroxine dose to 75mcg and I went to an endocrinologist for further investigation. I had blood taken last week. Good news is pretty much everything is 'normal' again....TSH, t4, t3, trigs, cholesterol. I also came back negative for thyroid antibodies (so I guess I don't have Hashimotos).
What confuses me is why my thyroid is acting up so badly if I don't have Hashimotos?
Hashimoto's
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My T3 and T4 both fell to well below range. My cholesterol and triglycerides also shot up (a side effect of hypothyroidism apparently ). My hair was falling out and I was exhausted.
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