Need help about blood tests as I have no energy

Last September I asked for blood tests and found out my thyroid was over active. I then had my bloods done in October and November and my thyroid had changed to underactive. I had a thyroid scan as I was finding it hard to swallow and was told it was enlarged but my new bloods showed my thyroid was almost normal but because I was having so many symptoms I would take 25mg levothyroxine. My bloods have come back normal this week but I am still so tired, unable to concentrate, unable to concentrate. I haven't been at work this year as I am tearful, emotional, no energy, get blurry vision, losing hair, cold, hot, sleeping through out the day and night, weight gain, major anxiety and my brain can't remember anything. I am fed up of only having energy for an hour or so and then needing to sleep as I have run out of energy. I told my doctor this and because I started crying she said do you think you have depression! It can't be your thyroid as your blood test is fine. I have heard that T4 readings can be fine but you can still have all the symptoms, is this true? I need to go back to the doctors with information and a plan, otherwise I will get told it's in my head. I am so fed up of having no energy and need to get back to work. What blood tests should I be asking for? Please can anyone help?

29 Replies

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  • Good luck hunni

  • Thank you, I hope you're doing ok too

  • 1lackingenergy Have you had thyroid antibodies tested? The NHS rarely do them, then only one type - Thyroid Peroxidase (TPO) but there is another type - Thyroglobulin (TG), which I think may only be done by an endo.

    Ask for:

    TSH

    FT4

    FT3 (unlikely to be done)

    TPO antibodies (you may be lucky)

    TG antibodies (unlikely)

    Also ask for the following vitamins and minerals to be tested

    Vit D

    B12

    Folate

    Ferritin

    Those are all involved and need to be optimal for thyroid hormone to work, our own as well as replacement.

    If you can't get them all done by your GP, it's possible to get them done with a home fingerprick test so let us know if you want details of that.

    If you've got any of your previous test results, post them and we can see what's going on. You are legally entitled to a print out of your results so ask your surgery for them.

  • I will go to the doctors Monday and ask for all the test I have had done and then I will get back to you. I have seen twp different endocrinologists, the first was rude and very dismissive. The second one was ok but didn't explain much to me. I am having to do research so I don't get palmed off any more. One minute I have bipolar, then thyroid and now they say depression. I've just had enough now. The doctor has signed me off for another two weeks but said she can't put down fatigue or thyroid as that is fine. In other words go to work but I can't concentrate, think, remember or stay awake, it's just so frustrating. I have the endocrinologist in June but need this sorting now. Sorry for the rant. I'll write back when I have all my results from the blood tests. Thank you for your response

  • If I was a betting woman - I'd put a large sum down that your doctor is wrong.

    She hasn't taken FT4 or FT3 and FT3 is the most informative and most important.

    Blood tests for thyroid gland have to be at the very earliest possible, fasting (you can drink water). If you were taking thyroid hormone replacement you'd allow 24hours between last dose and test and take afterwards.

    The tests you need (probably wont) but we have private labs who will do the necessary.

    TSH, T3, T4, Free T3, Free T3 and thyroid antibodies. GP may not do all and some labs wont if TSH is 'normal range'.

    GP should do. B12, Vit D, iron, ferritin and folate as we can have symptoms and are usually deficient.

    Always get print-out of your blood test results and post with the ranges. Ranges are important as labs differ. Even if you get the results of the test and put on a new post for answers. I shall give you a couple of links and you will be surprised, I'm sure. The fact that you will then know far more than your GP as they know none at all. They've been told to diagnose upon the TSH alone. If you have thyroid antibodies, you'd have an AutoimmuneThyroid Disease called hashimoto's but eventually become hypo.

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

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

  • Hi 1lackingenergy.

    Have you looked up Hashimoto's?

    Your scan showed it was enlarged, so is your GP refering you to an Endocrinologist?

    If not, have you thought of asking her to refer you?

    X

    ps

    Did the Consultant Radiologist who did the scan say anything?

    pps

    Know what your going through - Best Wishes in your battle to get an accurate diagnosis. Why does it have to be so difficult?

    XX

  • I have recently been reading about Hashimoto's but I am getting so confused with all the information. The radiologist said nothing to me during the scan and I have seen an endocrinologist who just said it is enlarged. He said that being on the thyroxine will sort the thyroid out which will mean the thyroid should then shrink back to normal. Thank you for your response and I hope you are well

  • Hi again 1lackingenergy

    I don't know when you last saw Endo, but have you thought of calling the secretary and asking if you can see Endo NOW as you're not coping and June is too far away. If not, could she at least ask Endo to phone you (not the first one you saw but the other). Have your list of questions and symptoms written down ready for when they call back. Tell him/her you fear for your job.

    Failing that, you could ask your GP what your Diagnosis is?

    My experience: I was seen 3 times. Had more blood tests (that GPs don't do) and test arranged to check adrenal glands. Then was started on 50mcg Levothyroxine & increased at subsequent appointment.

    I requested copy of my hospital records (we don't have to pay here if we ask within 40 days of last being seen - don't know if that's changed - was 5 yrs ago)

    I read in Endo' s letter to GP:

    ' ...... Diagnosis: Hashimotos Autoimmune Thyroiditis and Hypothyroidism.'

    He'd also written '- was overtly Hypothyroid in 2008 .'

    Well, no GP ever apologised for not telling me - they don't, do they?

    You rant away all you need & don't apologise. It's that 1st endo and that GP who should be apologising to you.

    At least there are lots of people on this site who understand and genuinely care.xxx

    Mary

  • lackingenergy,

    Welcome to our forum.

    Fluctuating thyroid hormone test results and an enlarged gland would indicate Hashimotos Auto Immune Disease.

    Ask your GP to test TPOAb & TBAb and also folate, ferritin, Vit B12 and vit D. When GP's are uncooperative members use private labs. Post results complete with ranges (numbers in brackets) for members to comment.

    .

    Getting A Diagnosis

    thyroiduk.org.uk/tuk/diagno...

    .

    Hashimotos

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

    .

    Private labs testing

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

    .

    The importance of vitamins and where they may be obtained.

    thyroiduk.org.uk/tuk/treatm...

  • I have learnt if you wait for GPs/Endo's to help sort this out for you, you'll stay sick for a very long time. If you can afford it, do the bloods privately especially the antibodies, you'll know what you are dealing with in a matter of days. You can then get help to understand them here. I lost two years of my life with subclinical hypothyroidism & uneducated doctors...sometimes you have to take control of it & with brain fog it is a big ask.

  • Not sure whether I am reading this correctly. Are you taking 25 mcg Levo? If so I hope you have been told to go back in 6 weeks to be retested. 25 is a low starting dose just to get you used to the drug. It is unlikely to make you feel any better, some say it made them worse but it takes 6 weeks to build up to the full dose as it increases slowly so then the retest where you should be due for an increase then start the sequence again until your bloods are good and you are feeling better but all this takes time and you can't speed it up, trying to may send you back to the beginning so be patient.

    Anyotger important point is that often doctors say you are fine because your results are in range but that doesn't mean you feel good! Feeling good is when your medication is optimal and that's often high in the range for FT4 and FT3 if you can get that tested though not everyone will do it. Always ask for a copy of your results and the ranges and post them so others an comment as to what is happening the ranges are important as they differ from lab to lab so without them comments are guesswork

    There is loads of info on the Thyroid Uk site about how to take it properly and a list on does and don'ts and many other things I'm sure you will find interesting. Should out if anything you don't understand.

  • firstly i susoect you have Hashimotos and the original overactive phase was part of it

    its vital you start a file and always get a copy of your actual test results as far too often they do not test correctly

    its also vital to arrange the test fir early morning fasting after dinner and only water to drink and most important of all never never take the levo in the 24hrs before the test

    go back to your GP and request that

    thyroid antibodies

    TSH

    free t4

    freet3

    ferritin

    folate

    b12

    vit d3

    are all tested because they are all interelated and unless the last 4 are all at least halfway in their ranges the body cannot utilise the levo which is T4 and convert it into T3 which every cell in your body needs to function

    many doctors do not understand this and they also do not understand that TSH must be 1.0 or below and free t4 and free t3 in balance and near top of their ranges if you are to be well

    theres too much focus on saying "in range"

    your symptoms are clearly hypothyroid and whatever you do dont take anti depressants or anti anxiety pills or lanzoprazole or PPIs

  • Hi reallyfedup123

    May I just comment on the last sentence of your post, from my own personal experience.

    I suffered acid damage to my throat (benign). I didn't know I had a hiatus hernia. I understand that untreated rising stomach acid can cause more serious conditions.

    Lansoprazole saved my throat.

    I suffered many years with undiagnosed Hashimoto's.

    When I finally plucked up the courage to ask a GP for the Ultrasound scan. He did not hesitate refering me to Endo when he had results (next day).

    For a GP to have a scan result with abnormality and not refer is bad, especially with the bloods history AND all the Hashimoto's symptoms.

    I'm sure we're all agreed on that!

    X

  • Hi can I ask if your acid damage to your throat was coursed by the Hiatus Hernia or was it due to your thyriod? I suffer with Hashimos & mild Crohns, Ulcerative Colitis, M.E. Ulcer & two Hiatus Hernias. I really suffer sore throats like tonsilitus but I don't have any tonsils but it hurts to swallow & is red raw.

  • Hi that's a good question. I believe the ENT doc I first saw thought so. As he said he thought I have a hernia before it was even diagnosed. Can't remember the name of throat part just now but it's what holds the larynx. However larynx, they said, was OK. When I saw the Consultant later on I asked what caused the other damage (to the cricopharyngeus -which is permanent) and he said it was acid from stomach. I have Hiatus Hernia and GORD.

    I don't have any tonsils either and I had your symptoms. I used to sing in choir, it was painful. & painful to talk as well as swallow.

    I assume you had the Barium Swallow as you had Hernias diagnosed.

    So it should be on record if you had damage to cricopharyngeus.

    The consult said take Gaviscon after meals and before bed. But too thick for me. Peptac easier, though not on it just now.

    You could ask your GP to refer you urgent to ENT for a nasendoscope.

    I didn't get the Hashimoto's diagnosis till about 3 yrs later but had suffered many years off & on. In time between I saw Colorectal, General Surgeon, Gastroenterology and Rheumatologist (who missed the Hashi's).

    I only found out all I have by getting copy of hospital records.

    I still take Lansoprazole orodispersable (Zoton Fastab ) as with the capsuses the pain returned.

    I hope you get your throat sorted.

    X

  • I was diagnosed with Hashimotos accidentally due to an MIR scan on my head & neck from ENT for my nose. They found a mass & I was sent for a needle biopsy even had another as they thought it was Cancer. Was diagnosed from the biopsy with Hashimoto & Hypothyroidism. I had the lump removed & had to have a second opinion at Oxford but it turned out to be part of my thyriod had broken off. God know how it travelled further down my neck. Anyhow ENT just dismissed my sore throat last week & I never seem to get any answers but I am very persistent & the more I understand the more I can get them to keep referring back this time to a different Endocrinologist as the last one was useless. I was first diagnosed with M.E. back in 2002 & over the years every condition I have had was always blamed on my M.E. now I know different. I must of been suffering Thyriod problems for years this is why now we have Hashimoto thyrioditus. Thank you for your reply.

  • That must have been terrifying, what you went through.

    2nd appointment with first ENT I saw, HE was dismissive too. Though I am grateful for what he found. My tablets had run out and he just said 'see GP for more' My symptoms returned before I could, I was very upset. Then I had to fight to get the right ones.

    Could you phone the ENT Consult's secretary, tell them about last week and you're really upset with the symptoms and feel you need to be seen again? Like I did? Failing that you would need to get a new GP referal.

    You could also ask for copy of your Medical Records from admin.

    Getting seen by the right people and getting fully diagnosed is a very long, frustrating, wearying battle isn't it?

    It shouldn't be.

    All the best with finding out what's what's causing your throat problems.

    Thanks for your reply.

    X

  • Hi Allyson.

    The acid damage to my throat the first ENT specialitist found through the nasendoscope was to the:

    Arytenoids

    The diagnosis is:

    Laryngophayngeal Reflux

    This is when the stomach acid rises up to the throat and not just up to the esophagus . I think it 'pools' in the throat when lying down at night.

    It was a Gastro Doc who at some point diagnosed the GORD.

  • if hashimotos is diagnosed and treated correctly the accompanying Hiatus Hernia ( very common in hypothyroid) does not need to cause acid reflux ....my husband has a HH and only suffered acid reflux before he was switched to NDT ...on ndt he never has a problem

    the big problem is far too often hypothyroid is not diagnosed for years especially if thry insist on relying on just TSH because no way on this earth can TSH ever pick up Central hypothyroid ( yes my husband and daughter and grandaughters all have CH + Hashimotos )

  • Can you tell me what NET is? Thanks

  • I meant NDT.

  • Allyd68, NDT = Natural Desiccated Thyroid. Go here and scroll down the page until you see the heading Treatment Options. thyroiduk.org.uk/tuk/about_...

  • Thank you now I know. I have been looking into this & have read doctors plus Endocrinologists prefer to use synthetic. But I would rather the natural it's just a matter of working out the right dosage but like anything it trial & error. Thank you for your reply & the link much appreciated.

  • Many other abbreviations and acronyms can be found in my document created expressly for this forum:

    dl.dropboxusercontent.com/u...

  • Clicked on the link but states file not found.

  • Just found a problem and need to resolve it. Apologies.

  • Thank you x

  • NdT = natural dessicated thyroid =pigs thyroid gland

  • It would be really helpful if you explained this when you first mention "NDT".

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