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Thyroid Disorders
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Posted 10/23/2013 4:03 PM (GMT 0)
Hi my name is Jo. I'm a 28yr old girl and this is my story.

Back in November 2011 a blood test showed my TSH was high at 5.2 (normal range 0.2-4.2). Doctor does nothing about it.

A month later the front of my neck swelled, my voice went hoarse and I couldn't swallow without pain. I didn't see a doctor as I thought it was a very bad throat infection. The swelling goes down within 3 or 4 weeks.

In March 2012 I was told by a nurse at an A and E that I had a goitre and to go back to my doctor for more thyroid tests. Doctor refused to test.

I develop very bad pains in my leg and it hurt no matter if I was using it or not. A nurse at another health centre diagnosed me with hypothyroidism and suggested I see my doctor for more tests. When I told her that the doctor hasn't been wanting to test me again she wrote up a letter and sent it to them, requesting them to test my thyroid function. Doctor ignored this letter and did not answer to it when I asked them. Again no test.

I'd gotten fed up at this time so I changed doctors in January this year and asked for an antibodies test. They came back raised with the A-TPO at 84,000 (normal range below 34,000 I believe) and my TSH at 0.69. (normal range 0.27-4.2). Doctor I saw wanted to keep an eye on the TSH as it could change.

I felt worse within 4 months and my thyroid was retested. TSH came back at 22 and my FT4 at 10.9 (normal range 11-23). I was put on thyroid medication Levothyroxine at 25mcg but gradually building up to 75mcg by the time my next test was due.

I went back for my follow-up in August for the results of the next blood test and my TSH was at 4. The doctor looked at me weird and said to me, "strange question, but are you taking your medication as I instructed you to?" And I said "...yes." I didn't know what he was getting at. It was within range and he said it was but it was almost as if he was suggesting it was still high.

And none of my doctors have explained to me what it is I've got. They've gone as far as to say it's autoimmune and that the really high TSH showed I was hypothyroid but that was it. I've been told by my support group I have Hashimoto's but why can a doctor not give it that name?

I've done really well with myself lately. I had very bad constipation some time ago but since increasing my fruit and water intake it did improve but has since come back. It's so annoying! Not only that but the dark circles and heavy bags have reappeared under my eyes and it makes me feel like I've gone back to square one again.

I feel very alone with this as I've gone to great lengths to explain to my grandparents about my illness and how it makes me feel but they seem more concerned about why I haven't got a job yet. I left my previous employer due to how rubbish this is all making me feel, you see.

Any support/advice/help would be greatly appreciated.

Thanks

Jo
Posted 10/23/2013 5:35 PM (GMT 0)
Jo, you have a classic profile (symptoms and labs) for Hashimoto's autoimmune thyroiditis. It sounds as if you made a good choice in changing doctors. I do hope your current doctor is rechecking you every six to twelve weeks, as it can be really difficult to stabilize the dosage of medication.

Have you seen a good endocrinologist? I would try to get a referral; most PCP's can manage stable thyroiditis but aren't always so good at getting you to a stable point.

I have Graves rather than Hashi's, so hopefully some of our members with it will be along in a bit to give you the benefit of their personal experiences.
Posted 10/24/2013 2:25 PM (GMT 0)
Hi there. If you have antibodies, you almost certainly have Hashimoto's.
Gosh, if your TSH was THAT high you must have been feeling positively awful!
Bear in mind that it is common for Hashimoto's to sometimes cause people to be hypothyroid then swing to being hyperthyroid. Either way it's no picnic.

It's very common to have digestive problems (80% of our immune system is in the gut) and as a result of that absorption of many vitamins and minerals can be compromised.
Many people are low in iron (your mention of dark circles under the eyes makes me wonder - but that can also be due to food and other sorts of allergies)
Being low in iron will cause fatigue.
You could also be low in magnesium, definitely vitamin D, B12.
It's a good idea to be getting all those things checked.
Basically you have to be as healthy as you possibly can be and really focus on diet. Gluten free is almost the standard advice with Hashimoto's. At the very least try and reduce gluten from your diet as much as possible as it can cause inflammation.
Eating regularly is a must....you have to stabilise your blood sugar levels as this too can affect thyroid function. Don't skip meals and try not to binge on sugary foods.

Eat foods rich in selenium as this helps thyroid function (found in brazil nuts) Much research is being done on the benefits of selenium.

Don't eat copious amounts of goitrogenic foods such as cabbage, broccoli, brussel sprouts and cauliflower - these if eaten raw can hinder thyroid function -cooking these foods makes them safer to eat for those with Hashimoto's.

Medication is tricky and for a while you can feel better, but then your OWN hormones can start working and affect the balance - these hormones are so complex and work together with many other hormones (female hormones would be worth having checked too) and in conjunction with a whole lot of other systems in the body.
From what I've read, and understand, it can be quite tricky getting them all into some kind of balance.

Good luck....find a doctor who doesn't just treat your thyroid, but actually recognises it as an auto immune disease. It's not as simple as just treating the thyroid.

Post Edited (Desertrose7) : 10/24/2013 8:35:58 AM (GMT-6)

Posted 10/25/2013 3:33 AM (GMT 0)
Hi Jo,

I struggle for 3 years trying to get my MD to listen to me about my s/s. Most medical MD do not know how to treat Thyroid disease even endocrinologist. I also have Hashimoto's. When I first noted confusion, difficulty concentration I was placed on medication for ADHD. One year later at a 2 week medical retreat health spa I was dx with Hashimoto's. Begin on Levothyroxine did not feel better increase dose etc check TSH (which was normal) but still horrible switch to Synthroid continued to have confusion, weight gain, Atrial fib, incr chol., and then LFT's increased etc. I was pretty sick and no one would listen. My MD wanted to just give me another pill for chol and fib. Finally after three years of feeling horrible and my MD not listening I decided to find my own answers. I stop taking Synthroid for a week and actually felt better. But new I need something. I went to a medical MD and got a prescription for Armour and after a couple of weeks I did not feel any better. I believe Armour has additives and preservatives now which it never did have.
Finally I went first to a Nutritionist in a Chiropractors office who practices wellness etc. I started on Vitamins from Medi herb (LivCo, Thyroid, Rehmania, Selenium and one other. She was able to refer me to a Primary care MD who KNOWS how to treat thyroid. My levels when i saw him for the first time were
My TSH 24, ABO > 1000, T4 and T3 very very low. Yes I was pretty sick by then.

My suggestion to everyone out there with Thyroid disease is find a doctor who knows how to treat thyroid disease - not many actually do even endocrinologist. Labs to monitor to adjust thyroid medication is T3 and T4 and TSH. Thyroid Antibodies level is a must lab value if you have Hashimoto's disease , Change your diet to GLUTEN FREE as much as possible. I am about 90% Gluten free. No Breads, No wheat etc.
After three months of treatment on Natures thyroid my TSH is 3.35, T4 1.5 and T 3 4.1 and antibodies still high 820 but coming down. I have also lost 19 of the 25 i put on without even trying.
Hashimoto's is an inflammatory process and antibodies attach your system.

I started on Natures Thyroid (prescription) which is a T3 and T4 medicine without additives. Natures Thyroid was a life saver for me.....I know have my life back, I am able to think, No longer sleep . 24 hours b/c I was unable to awake, no more heart palpations, No more body aches or itchy dry skin, hair falling out, night sweats etc.

Good luck there is hope, find a good medical doctor who will listen to you. This is the best I have felt in 4 years.!!!! I am referring all my friends who continue to have s/s on Synthroid to get off that med!!! Synthroid is not a natural thyroid hormone pill it is synthetic and only a T4. Thyroid ABO's causes inflammation of different systems in your body, If your gut is inflamed it can not break synthroid T4 synthetic drug to a T3 which the body needs to produce metabolism etc. Nature thyroid is from animal thyroid and contains T3 and T4 and other elements which your body can use etc.

RN
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