Normal Thyroid Labs but extreme hypothyroid symptoms

[Steve-H]

Hi, i would just like your thoughts on normal thyroid labs but extreme hypothyroid symptoms. For this reason it took me about 2 years longer than it should have to recieve a diagnosis those 2 years of my life i will never get back, and who knows how long them extra two years have added onto the time it will take me to "recover" and lead some what of a normal life.

2 Possible reasons that i would like you to answer please.

RT3 was "blocking" the cell receptors so not allowing the T3 into the cells. I had extremely high Rt3 blood tests which i had to have done privately as the NHS do not recognise this. This would show normal TSH FT4 and FT3 but would give extreme hypo symptoms.

It has been proven (i will be able to post references to studies later if needed, im a little short on time at the minute) that the pituarty is able to function normally when other tissues in the body are lacking T3. So if there is not enough T3 in all of the tissues causing hypo syptoms but the pituarty is able to function as normal, it would throw out a normal TSH even though the person is extremely hypo and all the other tissues are actually lacking T3.

Thank you for your time.
Steve

[Dr Petros Perros]

Dear Steve, I was interested to hear your story. It is difficult to comment on what may be a complex problem, but I have to say if a person has unexplained symptoms and the clinical examination is normal and a full thyroid profile (by that I mean serum TSH and FT3/FT4 levels) is entirely normal, it is extremely improbable that there is thyroid disease. This scenario would prompt consideration of other explanations for the symptoms. You have brought up an important issue, that the measurement of serum TSH alone is not always enough to exclude hypothryoidism, in a tiny proportion of cases pituitary disease can be missed.

[Steve-H]

Dear Steve, I was interested to hear your story. It is difficult to comment on what may be a complex problem, but I have to say if a person has unexplained symptoms and the clinical examination is normal and a full thyroid profile (by that I mean serum TSH and FT3/FT4 levels) is entirely normal, it is extremely improbable that there is thyroid disease. This scenario would prompt consideration of other explanations for the symptoms. You have brought up an important issue, that the measurement of serum TSH alone is not always enough to exclude hypothryoidism, in a tiny proportion of cases pituitary disease can be missed.

Thank you for taking the time to asnwer Dr Petros Perros, if you do not mind me asking may i ask; How old you are ? and when did you do the majority of your endocrinology training ?

Could you answer or give to some explenation then if the full thyroid profile is normal, but now that i am on T3 thyroid replacement(92mcg) on a higher dose of your reccomended guidlines of 40-60mcg that 90% of my symptoms have subsided and my overall health has improved from about 1 out 10 to about a 7 out of 10 (1 being unwell, 10 being well).

Steve

[supressedtsh]

I have proved doctors and endocrinologists wrong who told me that I was NOT hypothyroid and that my symptoms were down to .... well you wouldn't believe me if I told you!! but they were all W R O N G because I am hypothyroid and do not have any of the debilitating symptoms that I had - voila and three cheers for me who did a bit of research and diagnosed myself!

[Steve-H]

Could you please also answer the following questions.

I agree with you about the importance of the issue i have raised. I expected that from a Panel of thyroid experts, i would have received a more considered response. If my scenario prompts consideration of other explanations for my symptoms, what blood, urine, saliva tests would you recommend and what further investigations would you then do. Could you list these please for people in a similar situation in the future. Alot of fellow suffers are sent away from their doctors when there labs are within range but have alot of symptoms but without further investiagtion.

Have you ever considered anything of these when

Thyroid function blood test results can be influenced by many factors, any of which should be taken into consideration, e.g.
· Labelling errors
· Bacterial contamination
· Yeast/Fungal contamination
· Clotting
· Sampling errors
· Sample preparation errors
· Sample storage errors
· Thermal cycling
· Antithyroid antibodies (any)
· Antibodies from any other cause
· Presence of specific ‘toxins’ in the blood
· Presence of pharmaceutical drugs (interferences) within the blood
· The method of analysis being carried out eg radio-immune assay (RIA)
· ‘Systematic’ errors in analytical equipment or methodology
· Composite errors <> pre-analysis (not mentioned above)
· MCT8 mutations

It is also known that thyroid function tests will be normal also in patients who have a proven carcinoma. The T4 and TSH value can be misleading in such cases.- I could link to sutdies if needed.

The discovery of MCT8 mutations explains laboratory discrepancies e.g. cases in which the lab results didn’t fit a particular pattern. It also explains how thyroid hormone resistance can cause TSH to appear normal even with a low FT4. In many instances only the TSH test is performed. If the TSH result is normal, and symptoms of hypothyroidism are observed, tests for FT4, FT3 and T3 should all be performed.
None of these types of error are ever shown as being part of the reference range, but they all add to the unquantifiable ‘unreliability’ of the final number that appears on a lab report; stated to be within/outside a reference range. The labs expect, but often don’t get, notification of antibodies found by other labs or by investigations showing antibody activity, to enable proper screening (dilutions) for likely errors. e.g. vitiligo, alopecia, ongoing autoimmune symptoms specific to such as lupus, autoimmune attacks on specific organs, histology samples, haematological examinations. A search on Pubmed shows 126 such cases.


All of this ontop of my previous post shows just why it is un-reliable to rely ONLY on blood tests when giving a diagnosis of thyroid disease.

Please reply when you have a moment.

Steve

[talkhealth]

Hello Steve-H

Thank you for your posts which are all very interesting and clearly relevant.

However, our expert panel are really here to answer personal thyroid questions rather than comment on laboratory tests and some of the concerns you have. For this reason I hope you understand that the experts will be focussing on individual patient queries first and foremost.

[touchofclass]

Hi i am the same the say my lads tests are normal i am on 50mg but still have following problems
Cold Feet
Dry Skin
Hoarseness
Muscle Aches and pain
Frequent cold
Throat clearing

Surely my medication needs to go up i am on 50mg at the moment

[Steve-H]

Hello Steve-H

Thank you for your posts which are all very interesting and clearly relevant.

However, our expert panel are really here to answer personal thyroid questions rather than comment on laboratory tests and some of the concerns you have. For this reason I hope you understand that the experts will be focussing on individual patient queries first and foremost.

Ok i understand, please answer my post below relating to my individual patient query relating to my original post when you have a moment. Thanks

Dear Steve, I was interested to hear your story. It is difficult to comment on what may be a complex problem, but I have to say if a person has unexplained symptoms and the clinical examination is normal and a full thyroid profile (by that I mean serum TSH and FT3/FT4 levels) is entirely normal, it is extremely improbable that there is thyroid disease. This scenario would prompt consideration of other explanations for the symptoms. You have brought up an important issue, that the measurement of serum TSH alone is not always enough to exclude hypothryoidism, in a tiny proportion of cases pituitary disease can be missed.

Thank you for taking the time to asnwer Dr Petros Perros.

Could you answer or give to some explenation then if the full thyroid profile is normal, but now that i am on T3 thyroid replacement(92mcg) on a higher dose of your reccomended guidlines of 40-60mcg that 90% of my symptoms have subsided and my overall health has improved from about 1 out 10 to about a 7 out of 10 (1 being unwell, 10 being well).

Steve

[Tillytan]

Talk about evading an answer on blood tests which are what Doctors have become relient on as a means of diagnosing anything.This was not the case years ago as Doctors examined their patients.

[Essexness]

I concur with everything Steve H has said tho sadly I have NOT been successful in regaining my full health & quality of life as I have been denied a trial of T3 based on lab tests alone. I have Hashimotos & according to one endocrinologist resulting 'mild' hypothyroidism (which I wouldn't wish on my worst enemy). I gave up a well paid job as I could no longer function & my deterioration had been noted by my boss. Although my mental acuity & memory have improved (possibly due to a less stressful job )I still have many of the symptoms which resulted in the diagnosis 5 years ago namely tiredness (worse after exertion) numb hands at night, inability to lose weight despite good effort & many more. I have had every test going which has probably cost the NHS enough to fund proper treatment. Yet the is no check on 'adrenals' except for a short syncanthen test which made me very unwell & is apparently only of use in diagnosis of adrenal failure . I am now supposedly on 100mcg and 75mcg of levothyroxine on alternate days but cannot function on this so take 100mcg daily ( endo did say some people need to be at the higher end of normal to feel better). I despair of ever getting my quality of life back despite having written to my GP to express my dissatisfaction with a system that leaves people to 'live with the remaining symptoms' - a phrase one endocrinologist actually used to me. Not one has done a clinical examination or actually listened to my symptoms preferring to believe blood tests alone. How I wonder did people ever get diagnosed (or well again ) before we had blood tests let alone the wonder drug thyroxine (& yes I am being sarcastic about the one size fits all panacea that is thyroxine)!