How to be taken seriously?? Tsh 2.5 with high t... - Thyroid UK

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How to be taken seriously?? Tsh 2.5 with high thyroid antibodies.

Juliel666 profile image
10 Replies

Hi all, I'm struggling to get a doctor to take me seriously. I managed to get a thyroid antibodies test which came back positive but because My TSH is 2.5 and all other tests came back "normal" (i dont know the values for t3/t4 etc) they wont treat me, my symptoms are.

Chronic fatigue

Inability to lose weight

Brittle ridged fingernails

Dry skin

Hair thinning

Low heart rate as low as 54bpm regularly

Brain fog

Feeling low

Joint and muscle pain

Increased thirst

Cold hands and feet

Long family history of thyroid problems

Any suggestions on what i should do next???x

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Juliel666 profile image
Juliel666
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10 Replies
SeasideSusie profile image
SeasideSusieRemembering

Ask your GP surgery for a print out of your blood tests, it would be interesting to see what your FT4 is although I doubt that FT3 has been done.

As you have tested positive for antibodies you probably know you have autoimmune thyroid disease aka Hashimoto's. To help reduce the antibody attacks you should go scrupulously gluten free, many Hashi's patients find this is a great help. Some also need to be dairy free.

Juliel666 profile image
Juliel666 in reply to SeasideSusie

My gp didn't have my blood results she wanted to medicate me but protocol was to refer me to an endocrinologist who did all the other tests including b12 vit d, cortisol and many others everything had come back "normal" except my thyroid antibodies(positive) and CRP/ESR they were slightly raised. I had a thyroid ultrasound and all clear there so he decided to monitor my bloods 6 monthly for 2 years. First follow up was last month but only tested TSH. (2.5) I Do have a diagnosis of chiari malformation and currently going through a 2nd opinion for that to find out if it's secondary to a spinal fluid leak or i was born with it. But surely that shouldn't effect them treating my hashimoto's.

SeasideSusie profile image
SeasideSusieRemembering in reply to Juliel666

I'm not a Hashi's sufferer and there are members who know much more than me. However, they don't actually treat Hashi's, it's the hypothyroidism that is treated. The antibodies will fluctuate and eventually your thyroid will be destroyed. That's why it's recommended to go gluten free to reduce the antibody attacks.

I would ask for the results of your tests, normal doesn't mean anything. It's where you are in the range that matters. If your GP doesn't have the results of the tests the endo did then contact him/her and get them (with reference ranges). You are entitled to all your results under the Data Protection Act.

Your GP can, if he/she wanted to, treat you despite what the endo says. My GP disagreed with the way my endo was treating me (many years ago) and adjusted my medication to what we both knew was best for me. I never went back to the endo. With your list of symptoms and family history your endo is leaving you to suffer needlessly for the sake of a number on a computer.

Juliel666 profile image
Juliel666 in reply to SeasideSusie

I thought there was research suggesting that a small dose of thyroid medication when thyroid antibodies were present delayed the onset of hypothyroidism. That was what my doctor told me but the endo disagreed. I will have to get re-referred, just have such a lot going on with the brain condition and having to fight that i kind of hoped that would get sorted and this would settle down but i don't see that happening in a hurry. Thanks for your advice.

Treepie profile image
Treepie in reply to Juliel666

Get all your results and post them with the ranges for comment."normal" is not optimal. e.g B12 may have a range 310 -900 , 310 is normal but if hypothyroid needs to be near the top of the range.

You mention increasing thirst which can be a symptom of diabetes so might be as well to have that checked.

Juliel666 profile image
Juliel666 in reply to Treepie

Diabetes is checked every blood test (i think i have had every blood test on the planet lately lol) my last lot of bloods even the nurse said "wow" thats a lot of tests your doctor is being very thorough. Thanks for the advice tho. The increased thirst can correlate with my brain condition it's just sometimes hard to distinguish which symptoms go with which condition and this i think is why i have trouble getting treatment as the docs blame the brain condition for everything and pass the responsibility on. Like i said i have a loooong list of family thyroid history so I'm pretty certain it's not related to my chiari.

Is there an optimum time of day to have thyroid blood tests done? Only I've always had them done on morning I'm thinking would it be worth me having them done later in the day? (as thats when i feel worse)

SeasideSusie profile image
SeasideSusieRemembering in reply to Juliel666

The best time of day to have a thyroid blood test is as early as possible in the morning, the first one available. This is because your TSH will be highest then and it lowers as the day goes on. You need it to be as high as possible to get a diagnosis of hypothyroidism. Also, don't have breakfast before the test, it's best done on an empty stomach.

Juliel666 profile image
Juliel666 in reply to SeasideSusie

Thankyou...Ive always had them done around 11am after breakfast. I'll push for more bloods and go 1st thing.

joyce59 profile image
joyce59

iam not an expert but sounds as if your gp is sticking to guidelines rather than looking at your symptoms. Mine went on for 11 years without being treated and i wasnt even told the readings were out of range.

nk2671949 profile image
nk2671949

Hello, your hypothyroidism is very symptomatic, and whatever your blood tests, you have to be quickly treated. Hypothyroidism may be evident despite a normal TSH. Thus, a normal TSH does not exclude hypothyroidism. It is important to know your T4 and T3 levels. Auto-immune Hashimoto's thyroiditis is characterized by the presence in the blood of increased number of thyroid antibodies. I can tell you that your thyroid is failling or just about to be destroyded. Get in touch with me to have further information.

N.K.

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