don't no what to do or think about my results or what comes next!!!!

I am a 38 year old female and new to this site and would appreciate if anyone could read my post and comment with any knowledge they have. I first started getting symptoms in 2011; swollen stomach, heavy periods, feeling really down, insomnia and generally feeling unwell. I went to my doctors and had my thyroids checked as I had informed them that I have a strong family history of thyroid problems, 2 aunties had thyroidectomies my grandma also suffered with her thyroids.

the thyroid test were done and I was told they were normal and no explanation or further investigation as to why I was feeling so ill. A few months passed and the swelling in my went down but the feeling down continued but due to been told your test results are normal I never pursued it with my doctor. Although I do not have the results to hand I do know that the are very similar to my current tests: TSH level- 0.29miu/L [0.2 -4.0] FT4 level 12.4 pmol/L[10.0 -20.0].

In the past 2 years my younger sister as been diagnosed with hypothyroidism and my older sister as been diagnosed with Graves disease.

In 2015 I went to see my doctor with carpel tunnel type symptoms and was referred to physiotherapy I had slight improvement but still had symptoms. I was offered injection but I choose not to have these.

I then developed a pain in my shoulder I didn't go to the doctors until it came back again but worse. it started with a pain under my arm pain in my shoulder, shoulder blade and chest just below my shoulder. it was also painful to take deep breaths. I was unable to lift my arm due to the pain i have a swelling under my arm, a feeling of weakness, joint pain and tingling and numbness in my hands and fingers. I was sent for a x-ray which showed no abnormalities and the test for arthritis were normal and the thyroid test were as above. this went on for three weeks and then I started to develop a visible swelling on my neck which I could feel putting pressure on my windpipe so my doctor referred me for a ultra sound scan which says:

US Thyroid

The thyroid gland is enlarged with multiple nodules within both lobes and isthmus. No retrosternal extension. Wide range of nodules demonstrate. Within the isthmus there Is a 9mm nodule with complete rim calcification. Within the right lobe there are spongiform nodules, colloid cysts and nodules with coarse calcification. within the left lobe there are large cystic nodules the largest has mobile internal echoes suggestive of haemorrhage with incomplete rim calcification. No significant vascularity demonstrated in any of the nodules.

No lymphadenopathy seen in either side of the neck.

Comments: Appearances are of a multi nodular goitre. None of the nodules demonstrate any overtly sinister features. Note is made of strong family history of thyroid cancer. referral to thyroid clinic is suggested.

since this I have developed a swelling in my jaw going up to the back of my ear the severity of the pain is intermittent. It feels as though it as got bigger and I have a constant feeling of feeling as though I could be sick and I have been sick on a number of occasions, when coughing it is a choking cough and hoarseness to my voice. I am now functioning on 2-3 hours sleep a day and a severe loss of appetite along feeling cold.

these results came in three weeks ago and I was told then by my doctor that the referral had been sent and on checking yesterday no referral had been sent. This has now been done but would just like a little help/advice before my referral comes though.

thankyou

9 Replies

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  • Hi peejay77,

    I'm sorry to read you are so unwell. Did you ever get Vitamin B12 and Folate levels checked. Pins and needles, weakness and joint pain are symptoms of a deficiency.

    Lots of Thyroid patients have B12 deficiency and Pernicious Anaemia.

    Take care

    J

  • This is a link, archived, so some links within the topics may not work. Carpal Tunnel will interest you.

    web.archive.org/web/2010103...

    This is a list of symptoms:

    thyroiduk.org.uk/tuk/about_...

    This is an Interpretation of blood tests:

    thyroiduk.org.uk/tuk/testin...

    I see they've done a FT4 test but an FT3 would be more benefitical. We cannot function without T3, the active thyroid hormone and if it is very low we will feel bad. FT3 should be towards the Upper range, not middle or lower.

  • I think you forgot to put in the first link, shaws. :)

  • Thanks - your right HB :)

  • Your blood tests suggest all is ok, primarily because the TSH is low (0.29). Ft4 is lower in the range however (12.4).

    Getting an FT3 blood test would be helpful. It can be that your FT3 is high and so the body thinks you have enough thyroid in the system, hence the low TSH reading. If the Ft3 is high it shows the body is not using the T3 very well, so it sits there in the blood.

    So you feel pretty bad, but the body thinks you have loads of thyroid hormones.

    Really you need to see what the FT3 figure is as it will complete the puzzle. The other possibility is that the FT3 is low so you actually don't have enough T3, but the Brain is not picking this up and so it isn't instructing the thyroid to make more T4. This is a brain signalling malfunction and needs treating.

    Your thyroid is getting bigger and it does this when it is trying hard to make more hormones.

    You certainly have thyroid issues and it just needs more investigation.

    You should also see if the thyroid is attacking itself. The antibody blood tests will tell you if this is happening. So get these tested as well.

  • thanks for your advice, im not sure if you saw my last post I forgot to add that my twin sister was diagnosed with thyroid cancer 6 years ago and this is my worry

  • Peejay77, I disagree with the above poster, your results do not look good. TSH, which stands for Thyroid Stimulating Hormone, is a nice low number, Which would indicate thyroid function is good. But fT4, which tells you how much storage hormone you have in your blood, is right on the floor. Ideally you want that to be in the top quarter of the range. So in this case 17.5+

    It's unusual to have these two results pointing in different directions, and suggests there is something a bit strange going on. However doctors nearly always base their analysis on the TSH, which is not a good idea, but is the reason you may be getting fobbed off. FT4 gives a clue about what hormone your body actually has to work with, and its low, which means you will be getting symptoms and feeling crap.

    Now, in terms of cancer I have 2 things to say. 1 is that I've had thyroid cancer, and sat on it without realising till my tumour was about 4x the size of yours, and I didn't have any of the more unpleasant symptoms you are talking about that sound like their to do with obstruction in your neck, like the jaw problems. Make of that what you will, as of course everyone presents with these things differently. But it may be a tiny clue that you might have something different.

    But the second thing about cancer is that thyroid cancer in itself it not that terrible. It is a huge nuisance, as you would end up having a whole round of treatment that can last several months. But after that you are really in much the same boat as any other person with thyroid problems. So at the moment its clear you've got something quite serious going on with your thyroid, but please don't worry too much about whether it's cancer in particular, because that is not nearly as bad as it sounds.

    The one nice thing about having had cancer is that at least you always have that one confirmed diagnosis to wave at doctors, and you will certainly get access to an endocrinologist. My heart always goes out to people who have many symptoms but don't have the blood tests to match, as they can go years with no treatment. If you find you don't have cancer you may be in that struggle yourself, as your results currently look ambiguous.

  • A final note, if you do reach a dead end in diagnosis and treatment, Louise Warvill at ThyroidUK keeps a list of recommended Endos and doctors, mainly private, and you can get it by emailing her. So an option to keep in your pocket is that you can go your own way to try to get a proper diagnosis if the NHS let's you down.

  • peejay,

    Welcome to our forum and sorry to hear that you are not feeling well.

    It is good that you have had your thyroid scanned as this is the start of much needed investigations. All your symptoms could be attributed to a thyroid condition.

    Your T4 result is too low and is usually accompanied with a higher TSH than yours.

    In order to gain a clearer picture it is important to get the T3 level tested and thyroid antibodies TPOAb & TGAb as this would determine Hashimotos Auto immune Disease which is common in hypothyroidism.

    Also ask your doctor to check Vit B12, Vit D, folate and ferritin as deficiencies in these are common in people with low thyroid hormone and can inhibit good thyroid function.

    If your doctor is uncooperative you can use private labs in the link below as other members have to.

    If your referral is unsatisfactory you can email louise.warvill@thyroiduk.org.uk for a list of sympathetic endos/doctors that members have had positive experiences with.

    I hope you feel better soon.

    Flower

    Private labs testing

    thyroiduk.org.uk/tuk/testin...

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    Disclaimer: I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

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