My thyroid problem!

[Guest guest]

Hi all, I am suffering from the following symptoms - fatigue, occasional

palpitations,weight gain, constipation, memory problems, brain fog,

muscle pain/weakness, hair/eye brow loss, frequent urination( no

diabetes) tinnitus,ear pain,swollen painful joints,blepheritis,( dry

eyes, dry mouth-got an appointment about this soon.) Very swollen

scalloped tongue, numb toe, numb finger, yellow soles of feet, dry

skin,low body temps. 34-36c. The list goes on!

I have a multi nodule goitre(found in ultra sound) normal take up

scan(12 months ago). My mum and her sister both had goitres removed both

suffered ill health for years but neither where on thyroid medication.

Endocrinology said thyroid normal (TSH 1.2 ,TT4 93), (results at that

time),symptoms were suggestive of CFS, That was almost 12 months ago. I

have also seen a thyroid specialist, at that time I had slightly hyper

results but the next set of results came back' normal'

here are all my thyroid results 6/11 TSH 1.02 TT4 93

7/11 TSH 0.74 TT4

107 G.P. no ranges

9/11 TSH 0.05 (0.30-

6.00) FT4 24.4 (8.0-22.0) FT3 6.3 (3.6-6.4)TT4 118(60-150).

1/12 TSH 2.1

(0.30-6.00) FT4 16.3 (10-22)

All the doctors I have seen have said your thyroid is ok. Am I barking

up the wrong tree (even with all these symptoms) or playing a waiting

game for levels to rise enough for treatment. Sorry for the long post

hope you folk can help. Liz.

[Guest guest]

Hello Liz,No, I don't think you are barking up the wrong tree. Do ask your GP for a full thyroid antibody check . He needs to write out TPO, TgAB and TSI. The TPO and TgAB are checking for Hashimotos, the TSI are checking for Graves ( just in case). Simply writing 'thyroid antibodies' will not do as the labs will then only do TPO. He should question Hashimotos and Graves on the blood form.I guess you are seeing a rheumatologist for dry eyes and mouth to check for Sjorgens syndrome ?With best wishes and good luck,

[Guest guest]

Hi all, ( thanks for replying). Should of mentioned in my post ( 1st one so just finding my feet), when I had the hyper labs, TRab (graves) came back negative, I didnt get the actual numbers. Tpo was done awhile ago - negative - didnt get those numbers either. Dont think I have had any other antibodies done. Had bloods done yesterday, thyroid/cholesterol, last two cholesterol readings have been high (7.9, 6.3 ish ) even though I eat very healthily. Had the bloods done early yesterday 7.30am, earlier the better I believe. Thanks again, Liz.

[Guest guest]

Hi all, you asked me if I was seeing a rheumatologist for dry eyes and mouth, no actually I am seeing an eye specialist for the first time in a few weeks time. The eye dryness was noticed by a clinical nurse at my local eye unit, (which I went to one day when my eyes where very sore with the blepharitis). I told them that my mouth was very dry also, I was asked if I had arthritis which I said I had so it was suggested I should see an eye specialist in the eye unit, ( my GP has referred me). I also have terrible eye twitches and muscle twitches, drives me mad! Liz.

[Guest guest]

> Hi all, you asked me if I was seeing a rheumatologist for dry eyes and mouth, no actually I am seeing an eye specialist for the first time in a few weeks time. The eye dryness was noticed by a clinical nurse at my local eye unit, (which I went to one day when my eyes where very sore with the blepharitis). I told them that my mouth was very dry also, I was asked if I had arthritis which I said I had so it was suggested I should see an eye specialist in the eye unit, ( my GP has referred me). I also have terrible eye twitches and muscle twitches, drives me mad! Liz.

Hmmm - do ask about Sjorgen's syndrome, Liz - I don't know what an eye specialist will or can do, but you should get a full rheumatology check with those symptoms.... don't be palmed off with some eye drops and a pad on the back .....

http://www.medicinenet.com/sjogrens_syndrome/article.htm

Love,

[Guest guest]

> Hi all, ( thanks for replying). Should of mentioned in my post ( 1st one so just finding my feet), when I had the hyper labs, TRab (graves) came back negative, I didnt get the actual numbers. Tpo was done awhile ago - negative - didnt get those numbers either. Dont think I have had any other antibodies done. Had bloods done yesterday, thyroid/cholesterol, last two cholesterol readings have been high (7.9, 6.3 ish ) even though I eat very healthily. Had the bloods done early yesterday 7.30am, earlier the better I believe. Thanks again, Liz.

In the olden days hypothyroidism was diagnosed and treated on the basis of high cholesterol .... no such luck nowadays, although nothing has changed as far as cholesterol levels go.

Good to know that TRab was negative - that's one less worry. Do ask your surgery for copies of all previous lab results inclusive of ref ranges for your own records - it is your right to get copies, they can't withold them. Negative TPO does not mean that you do not have a thyroid condition. Autoantibodies go up and down all the time... and TgAB has not been checked... so nothing is ruled out, other than (hopefully) Graves.

Perhaps the following might be worth to show your GP ?

http://www.hormoneandlongevitycenter.com/thyroidtreatments1/ - scroll down to -

Standard thyroid tests lack accuracy to determine proper dose of thyroid replacement The British Medical Journal 293:808-810Are biochemical tests of thyroid function of any value in monitoring patients receiving thyroxine replacement?

Fraser WD, Biggart EM, OReilly DJ, Gray HW, McKillop JH

Most physicians, including endocrinologists, rely on standard thyroid tests to determine their patients' "proper" dose of thyroid replacement. The evaluation of a patient's signs and symptoms to determine the proper dose has been reduced to the point of being unimportant to most physicians. This study demonstrates that it is improper to rely on standard thyroid tests to determine a patient's optimal dose of thyroid replacement and doing so will result in inadequate replacement for the majority of patients. Thus, it is of no surprise that a large percentage of patients continue to suffer with symptoms of hypothyroidism despite being on so-call "proper" doses of thyroid, which is compounded by the fact that T4 only preparations are most often used.

This prospective study of 148 hypothyroid patients investigated the role of monitoring thyroid replacement with standard thyroid tests and the accuracy of such tests to determine the proper dose of thyroid replacement. The authors measured TSH, free T4, free T3, total T4 and total T3 and used a battery of clinical parameters and an exam by clinicians experienced in thyroid disease. This study found that the TSH is a poor measure for estimating the metabolic severity of primary thyroid failure and/or proper thyroid dose.

The authors conclude, "Measurements of serum concentrations of total thyroxine, free thyroxine and TSH, made with sensitive immunoradiometric assay, did not, except in patients with gross abnormalities, distinguish euthyroid [normal thyroid] patients from those who were receiving inadequate or excessive replacement. These measurements are therefore of little, if any, value in monitoring patients receiving thyroxine replacement…The serum concentration of thyroid stimulation hormone is unsatisfactory as the thyrotrophs in the anterior pituitary are more sensitive to changes in the concentration of thyroxine in the circulation than other tissues…It is clear that serum thyroid hormone and thyroid stimulating hormone concentrations cannot be used with any degree of confidence to classify patients as receiving satisfactory, insufficient, or excessive amounts of thyroxine replacement…The poor diagnostic sensitivity and high false positive rates associated with such measurements render them virtually useless in clinical practice…Further adjustments to the dose should be made according to the patient's clinical response…Our findings emphasize the need for laboratories to make their users aware that the reference ranges for thyroxine, free thyroxin, and thyroid stimulation hormone concentrations in patients receiving thyroxine replacement are considerably different from the conventional ranges; they should also point out limitations of these ranges."

Most physicians, including endocrinologists, feel that a suppressed TSH is an indication that the does of thyroid should be reduced (except with thyroid cancer). While a suppressed TSH may be an indication the patient is hyperthyroid, this study found that was the case only 20% of the time. In other words, doctors who make the assumption that a suppressed TSH means over-replacement and decrease the dose based on the suppressed TSH will be wrong 80% of the time because 80% of the time a suppressed TSH was shown not to be an indication that the patient was hyperthyroid or receiving too much thyroid replacement. Unfortunately, most physicians, including endocrinologists, lack of ability or confidence to clinically evaluate a patient's thyroid status and lack of understanding of the limitations of standard thyroid function tests, which has resulted in the majority of hypothyroid patients receiving inadequate doses of thyroid replacement.

with best wishes,

[Guest guest]

Thanks , I will see what the eye specialist has to say and maybe he will refer me on, hope so, muscular pain is really getting me down, it is nearly as bad as joint pain. Liz. From: <christina@...> thyroid treatment Sent: Wednesday, 28 March 2012, 19:29 Subject: Re: My thyroid problem!

> Hi all, you asked me if I was seeing a rheumatologist for dry eyes and mouth, no actually I am seeing an eye specialist for the first time in a few weeks time. The eye dryness was noticed by a clinical nurse at my local eye unit, (which I went to one day when my eyes where very sore with the blepharitis). I told them that my mouth was very dry also, I was asked if I had arthritis which I said I had so it was suggested I should see an eye specialist in the eye unit, ( my GP has referred me). I also have terrible eye twitches and muscle twitches, drives me mad! Liz.

Hmmm - do ask about Sjorgen's syndrome, Liz - I don't know what an eye specialist will or can do, but you should get a full rheumatology check with those symptoms.... don't be palmed off with some eye drops and a pad on the back .....

http://www.medicinenet.com/sjogrens_syndrome/article.htm

Love,