to be disappointed with normal blood test results?

[Cambam2010]

Underactive thyroid runs in my family. I show many of the symptoms of having an underactive thyroid - always cold, always tired, foggy head, carpal tunnel, weight gain, constipation, aches and pains throughout my body.

Whenever I have a thyroid function test the results come back normal and my GP will not carry out a thyroid antibody test because everything else is normal (despite a previous test many years ago showing I had thyroid antibodies). I feel so down about this so I paid for a private blood test that included antibody testing. The results have all come back within the 'normal' range.

I'm now disappointed because although I don't want to be ill, I was hoping for a diagnosis and treatment to make me feel human again and now I have no more ideas as to why I feel so bad.

HP
My cycle is 100% regular. The day my period is due it arrives. Same pattern month after month even with the level of flow. I do not use any contraceptives as my partner has been sterilised. I do not get hot spells.

Roon - other symptoms generally are the aches and pains. I feel very weak in my arms (it's a struggle to carry bags or to stir a cake mix), white finger, bad memory, dry eyes, stiffness, painful joints,

I sympathise OP. I have an underactive thyroid (Hashimoto). Your symptoms sound very familiar. I remember being absolutely knackered all the time pre diagnosis. I'm also suspicious regarding the definition of "normal levels" in this country. I don't feel right if my TSH is over 2. (It was much higher at times, but I'm definitely symptomatic at 4.5 or whatever the upper bound of "normal" is).

Could you see another GP and maybe get a referral to endocrinology? I was abroad when diagnosed, saw an endocrinologist and had ultrasound scans done of my thyroid. Turns out it was 1/3 of the normal size for a female. Since then I've had to change the dose of thyroxine a few times, but overall I'm feeling much better.

I really hope you get to the bottom of what causes your symptoms.

I'm in exactly the same boat as you OP. I did try Thryoxine for a while but it only made things worse

Jellybean This is the second time in a couple of days, I've seen you give out really poor 'advice', without much thought, to an ill poster on here.

I do hope you're not really a gp and if you are, then you are a bad one.

I've been there, and wanted to wring the neck of the GP who saw normal blood test results and stopped listening to how I actually felt and how badly I actually functioned.
According to her , all I needed was positive thinking and more excercise - when I was telling her that some days I was in so much pain I felt like hurling myself against a wall because it would not make things worse, and if I managed to knock myself out, might temporarily give me a break. And other days I was so fatigued that I couldn't walk.

But no. My blood tests were normal, so clearly I was healthy.

So I went to a different GP, and this one listened. Did some more tests, they also came back normal, and thid led to diagnosis of fibromyalgia. If my main symptom was fatigue, not pain, and I didn't gave the diagnostic tender spots, it would have been CFS.

So I know.how.you feel. It's not the "hypochondriac" oh woe is me, I am healthy, how dull. No, it's knowing you are ill, but lack of diagnosis making it impossible to know how to get better.

"Be positive and exercise more" is never bad advice, but in some cases, when you are asking for help to get into a state where you are capable of implementing this advice, it's positively insulting. It's like telling someone with severe depression to "cheer up".

Go back. See a different GP .List all yout.symptoms and severity of them on the worst days. Keep gong back and listing all the symptoms until you are heard and taken seriously.

I was not chuffed to hear that I have a chronic condition that is purely understood and had no cure. But knowing what I was dealing with, and being at least prescribed treatment.for symptoms, made it possible for me to carry on.

Good luck !

I'd recommend getting your vitamin D rechecked. It's taken a year of me taking 10,000iu a day to raise my levels enough. You should also tasks K2 and magnesium with vitamin D for maximum absobsusion. Be aware that the vitamin D Council is currently reviewing how much we should all take as they thing the calculations are out by a factor of 10 which means of you only take the standard 800iu recommend dose it's not enough.

Also while a level over 50 is not considered deficenet, optimum levels should be closer to 200.

Yanbu. I had a blood test for menopause and it came back normal despite having no idea where I my cycle I was (hysterectomy) and no idea of my normal. So I just feel like I'm going insane because apparently there isn't a problem .

I have an underactive thyroid.

I don't have any of the symptoms you list (although I am on 125mg of thyroxine) but I do feel ill if I don't exercise.

Maybe try that and see if it helps?

Have you been tested for coeliac disease? The symptoms you mention can be caused by that too - and it is apparently common for a tendency towards autoimmune conditions in general to be inherited (not necessarily just the same specific disease )

I think jellybean may have been my original GP ! I heard those exact words from her "I hear this all the time". " I could make.those same complaints myself".

Well, Doctor, that's not a reason to stop listening properly. Many of us do not actually go to the trouble of bothering our GPs until we have exhausted every other option ourselves, and the situation becomes long term and intolerable.

I understand coeliac can be an bugger to test for. My consultant was sure I had it but couldn't get two different tests to be positive. However after suggesting I go gluten free my stomach and bowel problems stopped.

Cambam, the weak arms - do you also "lose your grip" without warning, and have things slip out if your hands ? Do you ever feel dizzy and faint ? Any urinary problems ( frequency ir pain ) ?

Allergra - thank you for your response. You sum it up very well when you talk about not having the energy etc to follow the good advice of exercise more.

I have been going to my GP for many years with these symptoms and just seem to hit a brick wall. My next appointment is with the surgerys lead GP so I am hoping that she will be a bit more willing to look for answers.

My previous GP visit led to a response of "if your blood test show normal then you need to consider lifestyle changes". Well I've lost 4 stone over the past 3 years, I don't smoke, I rarely drink, I eat healthily, I try to do moderate exercise when I can. I work 30 hours a week in an office environment, I get a decent level of sleep (when not disturbed by pain).

Bravo - I was tested for coeliac about 4 years ago when my son was having digestive issues and the results came back as negative.

Allegra - I just feel that I have no strength in my arms. I struggle to open cans with a can opener as I don't have the strength to turn the twisty thing. I cannot carry things up high (ie not hanging down beside my body as in carrier bags) as I just feel that my arms are going to give out and drop them.

I often feel dizzy on standing but I have always put this down to having a low blood pressure.

Take a look at this. If all the blood tests keep coming back normal, it's likely a possibility:

en.m.wikipedia.org/wiki/Fibromyalgia

You don't have to have all the symptoms, different people are affected in different ways, both in range and severity.

Look up healthunlocked and join the forum under the Thyroid Uk section. There are many of us out there and the guys on the forum are super helpful and knowledgeable. Start a post with your full blood test figures with ranges. As some other posters have said TSH needs to be very low in some individuals in order to 'function' - mine is sub 1.
It is a good idea to avoid gluten but be careful not to go too low carb, this can be counterproductive if you have an underactive thyroid.

There is, I think, a second B12 test that is about how the B12 is used

The active B12 test, it tests how much B12 is active in your system. It's called Holo-transcobalamin or HoloTC for short. It's a private test and can be carried out at St Thomas hospital in London or via a home test kit. You will need a referal from your GP.

There's also Serum MMA - (methylmalonic acid) & Homocysteine (tHCY). These are not routine on NHS, but GP's will add them on if needed, sometimes you have to make a good case for them to do so, i did.

These are all available privately via home testing kits.

You can also get a full range of thyroid tests done privately via home testing kits.

Although some GP's can get a bit huffy if you walk in with a bunch of private blood test results, they will ultimately end up getting you retested by the NHS and their local labs if any are out of range.

Hang on... Anti TPO was 29 and they say you have no issue? That's just incorrect.
I work in clinical research (I am not a medic, I'm a scientist just to make that clear!) and we often have problems with standardising trial data because of this. Medics in the uk will accept TSH of up to 4 while in the USA you'd have treatment of you we're symptomatic at a lower level.

But anyway. You have anti TPO roughly three times the limit of normal. What did your GP say about that? Any thyroid antibodies with normal TSH and free t3/4 tend to indicate someone who is in a state of pre-disease. However, there can also be cross reactivity with this test. I think it can react if you've taken a vitamin B supplements in the previous 24 hours (the biotin I think.) it can also be positive of you have other autoimmune disorders or pernicious anaemia (which is why your doc checked your folate and b12.)

I suspect something low level and inflammatory going on. It may not actually be your thyroid. It the thyroid may be a knock on effect. I'd advise a lifestyle overhaul but you don't smoke or drink so it seems you're doing ok. Getting some inflammatory bloods done (CRP, sedimentation etc) could show there's inflammation but won't tell you why. Unfortunately this is a bit of a grey area diagnostically. Lots of people are given the fibro label which I'm not sure is hugely helpful - they obviously have pain and symptoms but it's quite a catch all diagnosis...

Skipton

I haven't yet shown my GP the private blood test results but the paperwork from the company shows my Anti TPO as 29.5 and the range as

We use

I sympathise OP.
I have no doubt that I am hypothyroid. I've been waiting 4 years for my TSH to reach levels that my GP will respond too. My hair is falling out. I'm exhausted. I'm cold. My hands go numb. I've gained weight. I fall asleep in the afternoons.
I had my blood tested privately recently. TSH has now risen to 4.9. The privae lab flagged this up, but I haven't bothered taking the result to my GP. It will be dismissed. I wait. I'll repeat the test in the future and hopefully it will have risen further.
I hope you get diagnosed soon.

At 4.9 you have a problem! Go back and be pushy.

TSH

Constant tiredness for me is usually sinus related. Tiredness and sometimes headaches are the only symptoms I get - no blocked nose or anything. Maybe try some nasal sprays and see if that relieves the symptoms. Also re tiredness -- it does build up, so you may need a holiday and extended period of 10+ hours of sleep a night. You also might just be someone who needs loads of sleep. I agree with others that the weight thing sounds normal sadly. I'm a similar height but weigh a bit less, but if I eat "normally" I gain weight. It's why people put on weight in their 30s and beyond. If you eliminated the tiredness the only symptom is poor circulation yes? So maybe ask the doctor how this could be improved?

Sorry to Hijack Cambam - but can anyone help me with my blood test issues?