Wanting a diagnosis

I have finally just got my Dr to refer me to an endrocologist after trying for 5 years. I have had weight gain, brittle nails, cold sweats, nausea, adrenalin surges, enlarged tongue, extreme fatigue, and waves of depression on and off lasting from weeks to months at a time. The symptoms are always worse in the winter months. I have no control over the symptoms they just start. I am new to this site and wondered if any of you were/are worse in the winter months? Also what tests are the endrocologist likely to do? Many thanks.

Hi all following on from above I had private testing done last year and my results were as follows;

TSH 0.52mIU/L 0.27 - 4.2 (low)

T4 96nmo1/L 59 - 154

Free thyroxine 13.8pmo1/1 12.0 - 22.0 (low)

Free T3 3.8 pmo1/L 3.1 - 6.8 (low)

thyroglobulin antibody 13.5IU/mL.

0-115 (negative)

Thyroid peroxidase antibodies 5.0 IU/mL 0-34

The result letter said I should b treated with having 3 low levels? Can anyone with good understanding of the results tell me what they think? Thanks

Last edited by

32 Replies

oldestnewest
  • You may need to see a rheumatologist if the endocrinologist can't help. These are fairly general symptoms that could apply to many conditions including autoimmune/ connective tissue diseases, but hopefully an endo will help you.

    My symptoms are usually worse in the winter months but I've got RA and Raynaud's as well as hypothyroidism. My friend with Addison's has similar sounding symptoms to yours and also has secondary Sjogrens. Be sure to write and take with you a bullet point list on one sheet of all the symptoms and how they impact on your life - starting with the most prevalent.

    Most consultants, in my experience, have been more helpful when I've taken a close friend or my husband in with me. They believe me more readily because these people are there as witnesses if you like. Good luck.

  • Thank you for your reply yes I've wrote a list and I'm taking my friend too. I also have M.E had it long time but last two years a lot of these symptoms are not normal M.E? I wake up with adrenalin, cold hands and nausea. Can feel so ill with it and can't function?

  • I have had an underactive thyroid for 32 years and I can assure that all of your symptoms are 'normal' I think it can be worse in the winter months, I have seen an endocrinologist just once. I was sent for a scan on my thyroid, I have never had the results. As I recently discovered there are other things to be aware of. Diabetes which has a lot of these symptoms as well, often goes hand in hand. I have never heard of this until it was too late, so you might want to ask for Blood Glucose check I am now diabetic and underactive, its a bit of a double whammy but I am getting there.

    I am not sure how much help they can give you I regret to say that it is a condition we very much have to live with. I have found though that my new low carb, no sugar has helped, I think with both conditions and I have lost weight, may not help you but it might be worth a try. I wish you well.

  • Thank you I can't tolerate sugar at all, if I have it I fall asleep, so know what you mean.

  • reading your reply is like reading my own history.

    I have been Hypothyroid for nearly 20 years and in January this year was diagnosed Type 2 Diabetic .

    The reason I wanted to respond to your reply is to draw attention to another related condition that is rarely considered.

      In addition to the usual symptoms we all share I  also had such extreme fatigue I requested that my Adrenals and Testosterone were tested and the Endocrinologist found that my Testosterone was 2 which is practically off the bottom of the reference range . Further tests discovered that the low testosterone was due to an over production of prolactin and guess which gland produces that ?  the Pituitary.!

    So it looks like it has been my  pituitary problem which  is responsible for my Hypothyroidism ( low TSH) and Diabetes and Adrenal fatigue, stress..hyper tension ,... carpal tunnel syndrome. and heaven knows what else. My Doctor and I assumed all my symptoms were due to my thyroiditus

    i would recommend that anyone who is hypothyroid and is suffering a range of symptoms without a diagnosis of the cause should get their pituitary checked . Its not known as the 'master Controller' for nothing.

  • Thank you that is really helpful to know x

  • My hypo symptoms are worse in the winter.

    I suppose the tests the Endo is likely to do will depend on what you have already had tested by your GP. If you have the results, please post them with the ranges and people here can advise you.

  • Ok thank you I will.

  • Hi,

    It does seem that you have an under active thyroid. The blood tests you need are TSH, free t4, free t3, reverse t3 and TPO. Often they only do TSH and free t4 but this is no good if you have a problem converting t4 to t3 but common medical consensus is that if there is adequate t4 then you should be converting it to enough active t3. Make sure you get as much information as possible before your appointment so you're not fobbed off. Look at thyroid UK website and Dr Peatfield Durant's book for good, sound information.

    Good luck.

    TT xx.

  • Many thanks I'll look at that x

  • Have you had thyroid blood tests???

    Ask GP receptionist for a printout which you are entitled to.

    The thyroid has to work harder in the winter months.

    Ask for your thyroid antibodies to be tested if they haven't already been.

    Read as much information as you can, there is a lot on thyroiduk.org

    Sue

    thyroiduk.org

  • Dr just done the TSH one and antibody one as well as bit D and calcium and said they were all ok, I not seen them but I will ask for a copy. Had private tests done last year and they were on low side I will get them out and post them for people's advice thank you.

  • Never accept ok, sounds like your tsh is high but not got to 10 yet!

  • Some people with hypothyroidism even find they need slightly more medication during the winter months. It is very common for the symptoms to get worse.

    Hope you get some help soon.

  • Thank you.

  • It might help if your endocrinologist also checked VitD, and Vit B12 levels. My thyroid symptoms are always worse in the winter months, we don't cope very well with cold weather.

  • Thank you often wondered why I went down in winter every year! I'm always worse of a morning too is that normal?

  • Well I've never been a very bright person in the mornings, but definitely worse now.

  • Yes, it is normal. Get your B12 levels checked too.

    Karen

  • My endo refers to it as a "seasonal change" and has his patients up meds in the fall and reduce in the spring (based upon how each patient is feeling of course).

    I always feel worse in the winter. I'm only newly diagnosed (June 2014) so I'm still getting the hang of it all and currently working with my endo to get to optimum dosing of levothyroxine for me. I have tried adding in T3 but that only may me feel worse.

    I also have lupus (SLE) and Sjogrens. I also recommend you get tested by a rheumy. You could have your GP send you for an ANA test to get things started.

    Good luck!

  • Thanks

  • since your TSH is low and your t4 and t3 are also low it very much point to CENTRAL /PITUARITY hypothyroid however I also suspect that your

    B12 is low

    as may be

    ferritin

    folate

    vit D3

    Ask your GP to also test them and cholesterol

    that will give us a better idea of how to help you

  • Thanks my D3 was fine but not had others done yet. Is severe nausea a normal symptom of this? Really struggle to eat until evening with bad nausea and when I do eat I go cold and have heart palpitations?

  • my guess is low stomach acid ...commom in hypothyroid ...try pepsin or betaine

    or pernicious anaemia which masks as Hypothyroid and why B12 should be tested

  • Ran it through our diagnostic tool (Isabel Diagnostic Decision Support) and following are the results - did not have your age, so used 30 - 39 or gender, so used Female. Listed by most probable first. Hope this helps:

    Query Details

    Age: adult (30 - 39yrs)

    Gender: female

    Pregnancy: Not specified

    Region: North America

    Query Text: weight gain| brittle nails| cold sweats| nausea| adrenalin surges| enlarged tongue| extreme fatigue|waves of depression|adrenalin| cold hands|nausea|decreased tsh|decreased t levels|decreased t

    Hyperthyroidism ENDOCRINE SYSTEM (red flag)

    -Graves Disease ENDOCRINE SYSTEM

    Iron Deficiency Anemia HEMATOLOGY (red flag)

    Hypothyroidism ENDOCRINE SYSTEM

    Pulmonary Edema RESPIRATORY DISORDERS (red flag)

    Megaloblastic Anemias HEMATOLOGY

    -Vit B12 Deficiency HAEMATOLOGY

    -Pernicious Anemia HAEMATOLOGY

    Postural Orthostatic Tachycardia Syndrome NERVOUS SYSTEM DISORDERS

    Renal Failure NEPHROLOGY (red flag)

    -Chronic Renal Failure NEPHROLOGY (red flag)

    Cardiogenic Shock SHOCK STATES (red flag)

    Rhabdomyolysis NEPHROLOGY

    Babesiosis INFECTIOUS DISEASES

    Sepsis and Shock SHOCK STATES (red flag)

    Heart Failure / CHF CARDIAC DISORDERS (red flag)

    Ectopic Pregnancy OBSTETRIC DISORDERS (red flag)

    Hodgkin Disease NEOPLASTIC DISEASES

    Hypovolemic Shock SHOCK STATES (red flag)

    Pituitary Neoplasms ENDOCRINE SYSTEM

    -Cushing's Disease ENDOCRINE SYSTEM

    Depression PSYCHOLOGIC DISORDERS

    -Major Depression PSYCHOLOGIC DISORDERS

    Hashimoto's Thyroiditis ENDOCRINE SYSTEM

    Lyme Disease INFECTIOUS DISEASES

    Antiphospholipid Syndrome RHEUMATIC DISEASES

    Chronic Fatigue Syndrome NERVOUS SYSTEM DISORDERS

    Ovarian Neoplasms GYNECOLOGICAL DISORDERS (red flag)

    -Ovarian Follicular Cysts GYNAECOLOGICAL DISORDERS

    -Ovarian Cancer GYNAECOLOGICAL DISORDERS (red flag)

    Cardiomyopathy CARDIAC DISORDERS (red flag)

    -Restrictive Cardiomyopathy CARDIAC DISORDERS

    Hyperparathyroidism ENDOCRINE SYSTEM

    -Primary Hyperparathyroidism ENDOCRINE SYSTEM

    Hypertension in Pregnancy CARDIAC DISORDERS (red flag)

    -Pre-eclampsia CARDIAC DISORDERS (red flag)

    -HELLP Syndrome CARDIAC DISORDERS (red flag)

    Premenstrual Syndrome GYNECOLOGICAL DISORDERS

    Celiac Disease GASTROINTESTINAL DISORDERS

    Diabetic Nephropathy NEPHROLOGY

    Myocarditis CARDIAC DISORDERS

    Endometriosis GYNECOLOGICAL DISORDERS

    Heavy Metal Intoxication TOXICOLOGY

    -Lead Toxicity TOXICOLOGY

    Meningococcal Disease INFECTIOUS DISEASES (red flag)

    Myasthenia Gravis NEUROMUSCULAR DISORDERS

    Pancreatitis GASTROINTESTINAL DISORDERS (red flag)

    -Acute Pancreatitis GASTROINTESTINAL DISORDERS (red flag)

    Adrenal Neoplasms ENDOCRINE SYSTEM (red flag)

    Dengue Fever INFECTIOUS DISEASES

    Osteitis Fibrosa Cystica ORTHOPEDIC DISORDERS

    Primary Adrenal Insufficiency ENDOCRINE SYSTEM (red flag)

    -Addison's Disease ENDOCRINE SYSTEM (red flag)

    Drug Overdose/Poisoning TOXICOLOGY (red flag)

    -Lithium Carbonate Toxicity TOXICOLOGY

    Thiamine Deficiency NUTRITIONAL DISORDERS

  • The comment about winter months makes me wonder: how are your nutritional levels, and esp. D3? There is a whole set of supplements you should probably be using, including D3, iron, folate, trace minerals (esp. selenium & iodine), and others. You should be able to find a summary of that on this site. Don't depend on anyone with "MD" after their name to advise you on nutritionals.

    I am assuming you have not had exposure to Lyme.

    Your TSH is NOT low. Don't let an endo browbeat you about that, since endos seem to be obsessed with TSH. TSH in the 0.1-2.0 range is good. Your FT3 is obviously too low, you should be at mid-range (~5.0) or better. Many people say FT3 in the upper quarter of the range is best. Your FT4 (free thyroxine) should be mid-range if that does not make you feel jittery, say ~17.

    Unless your endo is progressive, he won't prescribe you T3. You may have to purchase it off the web, if you want to see what higher FT3 will do for you. T3 is the best anti-depressant around, much better than SSRIs or tricyclics; don't let an MD push conventional anti-depressants off on you, before you find out if boosting FT3 will do the job.

  • Many thanks. Just having a major panic attack, they come from nowhere!! Not even stressed that's the annoying part!! I take D3 so will look into others thanks.

  • How are your adrenals? Have you ever had a 4- or 5-sample saliva test?

  • No not had one of them? Don't know if something wrong with them 2 ? It just comes on? Thanks for advice.

  • Hypothyroidism puts stress on the adrenals, so it's a good idea to check up on your adrenal rhythm and level. Adrenal output of cortisol should be high in the morning, decrease throughout the day, be low at night, and fall within an optimum band over each 24 hours.

    Sufficient T3 is helpful to the adrenals. On STTM, lookup "T3CM" and Paul Robinson.

  • Hi Brownie65

    I have similar blood tests results to you and I took thyroxine T4 felt worse then natural Desicated thiroid felt slightly better(a lot who can convert T4 to T3 well get better on NDT), now I take T3 only and feel a lot better, I have read Stop the thyroid madness and Paul Robinsons books and I am a member on his face book group, I have gained a lot of knowledge on health and thiroid. I also think its important to be trying T4, NDT maybe T4 and T3, T3 only in that order, often met with a lot of igneance from doctor who sometimes say your normal it's all in your head.

    But you may need the boost of you metabolism for your organs and hormones to work better.

    I hope this helps good luck

  • Many thanks for the advice xx

You may also like...