# help - Struggling with diagnosis



## Debrowe72 (Mar 21, 2010)

Hi - I wonder if anyone can help me with some advice.

For the last 8 yrs I have had extreme tiredness (10 hrs plus sleep/night and I am still tired), constipation, flaky peeling fingernails, swollen glands in my neck, joint pain, weight issues (to lose 1-2lbs per week I have to reduce calorie intake to 800 calories and run 10K per day) and if I stop this the weight piles back at speed. In the last 12 months I have added heart palpitations and vertigo to the never eding list of not feeling quite right.

I previously put this down to having had glandular fever when I was 18.

My sister has just been diagnosed with Hashimoto's disease and having read the list of symptoms I thought it a little coincidental.

My GP was not impressed with me going in with a potential self diagnosis but eventually agreed to get some tests done. T3 & T4 normal range, TSH 4.3 (UK GPs using 0-4.0 as acceptable level) and antibodies came back at 228 (ok level 35). I was told this was acceptable and I should just have another check up in 6 months.

I have done a lot of reading and am concerned I am being fobbed off by an inexperience practitioner as the antibody level is the key factor. I asked for a referral to a endocrine specialist but that has proved to be unfufilling too. I have expressed that in the future my husband and I may wish to have a family and that Hashi's can lead to fertility issues and subsequent risk of miscarriage/baby health issues and the specialist just questioned me on whether i was in a relationship and for how long - not sure how this was relevant but took pleasure in advising I had been with my husband for 7 years.

Anyway the joy continued further when he advised me that my tests were normal and all my symptoms were down to me being 'way too heavy'. I know I am heavy at the moment as this is the heavy part of my 'diet then give up to to joint pain/stress of starving' repetitive cycle that I endure. I have never felt so worthless. He focused on me being overweight and not on the symptoms which I experience when I am not at my heaviest. I do not think he believed me. He agreed to do further tests but advised that even if they come back with same results (high antibodies slightly raised TSH) he will do nothing. He did say that he expects me to get Hashi's in the future which I found odd?

Am I wrong to be concerned? Can anyone give me advice on how to speak to my specialist? I have sent him an email with a link to show that high antibodies is an indicator combined with my symptoms. My thyroid is not swollen (yet) but i do get lumpy swallowing 1-2 time per week. it would be nice to not feel so exhausted all the time.

Any advice would be most appreciated.

D


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## prettynikki5 (Dec 9, 2009)

Hello and welcome!
It sounds to me like you definitely need a referral to an Endo, somehow-if your GP won't do it, can you go to a different GP? I knwo the healthcare situation is a bit different there in the UK than it is here in the US.
All your symptoms and the high antibodies along with the pretty high TSH does suggest Hashi's from what I know of it. I have a recent diagnosis of Hashi's and those were alot of my symptoms too. My doctor also says that my symptoms cannot possibly be a result of thyroid malfunction (my TSH is 1.75 and I have a swollen thyroid w/ nodules). You know your body and when something is not right, I think most of us felt pretty much normal before, then at some point we started having all these strange symptoms, it is not that you are "way too heavy" of course that too, can make you feel like crap. But no matter how much you excercise, if your thyroid is not working properly, it is all pointless. I really don't get doctors, are they not paid enough anymore?! Some want to listen and really treat you, others just want you to go away it seems. I hope you can this all sorted out quickly and be feeling better really soon


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## daisy_ysiad2002 (Aug 17, 2009)

Hashi's is definately family related...your chances of getting it are almost definate one doctor told me. You are not imagining these symptoms. Its part of the disease or virus or whatever you want to call it. My antibodies were close to 800 few years ago and now they are around 260ish. My doctor said its not significant yet the LAB report said anything above a certain range (I think it was 40ish) is ABNORMAL. ? HELLO....there's a reason they give lab ranges. So I argued and told my doc that obviously they have lab ranges for a reason. My 2nd doctor said he treats based on symptoms and not always based on lab tests. So it depends if you have a doctor that is just lab test oriented or not. My mom and sister both were diagnosed in the last 2 years which helps MY CASE. We compare notes and I get info from what their doctor told them regarding symptoms and such. It helps/support wise. Its like a LONG TERM VIRUS in your body that never goes away, just depends how active it is and when it dumps those antibodies. Its like you feel like your 'going to get' sick but never really get over it like the flu or cold. I find vit D helps , Vit C and the selenium in blackstrap molasses mixed with tea * 1 tsp* helps with antibodies in making its full blah symptom attack. Those of us also with thyroid issues are deficient in selenium and magnesium too.


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## Debrowe72 (Mar 21, 2010)

Can I just say a really big thank you to you both for responding.

I have felt like i am going a little mad. Thankfully I have a lovely husband who has been with me through the ups and downs. Sadly the specialist i saw is an endo - but I have found out his specialism is diabetes so i suspect that was why he was a little harsh on me being overweight.

I am waiting for them to come back to me as I have shared research with him about new TSH levels etc.

Again - big thanks and hope everyone keeps having more of the good days.

I have a follow up meeting on 28th April and will post the outcome.... Fingers crossed!


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## Andros (Aug 26, 2009)

Debrowe72 said:


> Hi - I wonder if anyone can help me with some advice.
> 
> For the last 8 yrs I have had extreme tiredness (10 hrs plus sleep/night and I am still tired), constipation, flaky peeling fingernails, swollen glands in my neck, joint pain, weight issues (to lose 1-2lbs per week I have to reduce calorie intake to 800 calories and run 10K per day) and if I stop this the weight piles back at speed. In the last 12 months I have added heart palpitations and vertigo to the never eding list of not feeling quite right.
> 
> ...


Welcome D!! Sometimes it is rough going in the UK but it can be done. You might raise an eyebrow at this but if it were me, I would start screaming cancer. And might I add that this "really" should be ruled out or ruled in?

Then I would file appeals. I am helping a friend right now who lives in the UK who was turned down for a breast reduction while this has been difficult, we getting attention and some action.

In any case, it sure sounds like thyroid disease. I presume the antibodies are TPO (antimicrosomal?)


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## Debrowe72 (Mar 21, 2010)

Andros - thanks for your reply.

it would appear that writing to the boss of the endo professor I met has had some influence.

Today I have recieved a note confirming my test results (they had told me i needed to wait 6 weeks for them so just shows what happens when a few feathers are ruffled!)

In summary he has advised:TSH is again mildly elevated at 4.2 and the freeT4 whilst in the normal range is at the lower end of normal (13.2) ie compatible with the raised TSH. Your auto-antibodies are again elevated at 193

He has now advised he wants to treat me with 4 month course of 50ug of thyroxine. I am pleased at this now what he originally agreed - he was going to leav untreated. Not sure if this is the best but feeling so bad i will try anything.

If you have any other recommendations please advise as the experience i have had to date shows I need to be armed with all of the facts before I see them - thank you again


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## Andros (Aug 26, 2009)

Debrowe72 said:


> Andros - thanks for your reply.
> 
> it would appear that writing to the boss of the endo professor I met has had some influence.
> 
> ...


Good for you for appealing right off!

Here is some info w/ credible references.

Thyroid Antibody
Acronym Present in When ordered Other Facts 
Thyroid peroxidase antibody
TPOAb Hashimoto's thyroiditis; Graves' disease When patient has symptoms suggesting hypothyroidism; when a doctor is considering starting a patient on a drug therapy that has associated risks of developing hypothyroidism when thyroid peroxidase antibodies are present, such as lithium, amiodarone, interferon alpha, or interleukin-2 Has been associated with reproductive difficulties, such as miscarriage, pre-eclampsia, premature delivery, and in-vitro fertilization failure

Also

What does the test result mean?

Mild to moderately elevated levels of thyroid antibodies may be found in a variety of thyroid and autoimmune disorders, such as thyroid cancer, Type 1 diabetes, rheumatoid arthritis, pernicious anemia, and autoimmune collagen vascular diseases. Significantly increased concentrations most frequently indicate thyroid autoimmune diseases such as Hashimoto's thyroiditis and Graves' disease.

http://www.labtestsonline.org/understanding/analytes/thyroid_antibodies/test.html

Considering this,it would be good to at least have a sonogram. I prefer a radioactive uptake scan because it picks up the small stuff. But,In the UK, you would do well to get sonogram.

Glad you have a follow-up on 4/28. My fingers are crossed also. Let us know how you feel on the 50 mcg. of thyroxine.


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## Debrowe72 (Mar 21, 2010)

Thanks Andros - I'll you know how it goes


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