Endo assessment next week

[whisperit]

I'm hoping for some pointers as to what I should ask/clarify at my first appointment with an endocrinologist next week.

Briefly, my history is that I was diagnosed with Undifferentiated Connective Tissue Disease nearly 2 years ago and I started on hydroxychloroquine and steroids. After a few months of treatment, I developed daily episodes of sweating, shaking, nausea and severe fatigue. I queried a thyroid problem, but as my TSH remained within normal limits, this has been dismissed by my rheumatologist. The symptoms became so persistent and severe that I had to take ill health retirement a year ago. My rheumy attributes this to fibromyalgia on top of the UCTD (although I have no pain symptoms).

Doing a medichecks thyroid test recently, I get a TSH of 7.08 (range 0.27 - 4.2) and thyroglobulin antibody 824 (range 0 - 115). Other results are within range.

Combined with my ongoing extreme fatigue (I have become almost housebound), this seems to me to suggest a possible thyroid problem, and I am keen to explore this with the endo.

I have 2 worries. One is that he may dismiss my concerns and leave me with no treatment options - so I will remain housebound etc. The other is that I have a constantly high pulse - despite being on beta blockers. What to make of this?! Does it argue against hypothyroidism? Does it make treatment options problematic?

Any thoughts welcome

[Clutter]

Whisperit,

TSH 7.02 indicates primary hypothyroidism. It would be useful to see your other results. It's as important to see where in range results are as to know they are in normal range. I'm not sure why your GP hasn't diagnosed hypothyroidism and started you on Levothyroxine with TSH over range.

Thyroglobulin antibodies are positive for autoimmune thyroid disease (Hashimoto's). There is no cure for Hashimoto's which causes 90% of hypothyroidism. Levothyroxine treatment is for the low thyroid levels it causes. Many people have found that 100% gluten-free diet is helpful in reducing Hashi flares, symptoms and eventually antibodies.

chriskresser.com/the-gluten...

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

Pulse may be high because you have untreated hypothyroidism. It should improve after you are optimally dosed.

[whisperit in reply to Clutter]

Thanks, Clutter,

My thought was that it looks like Hashimoto's too. A previous TSH done in hospital one afternoon after I had been admitted with the same symptoms several months ago was in normal range. One thing I don't understand is why I would have a high pulse - doesn't hypothyroid cause a slow pulse?

Incidentally, my other medicheck results are:

FREE THYROXINE 16.8 pmol/L (range 12.00 - 22.00)

TOTAL THYROXINE(T4) 78.0 nmol/L (59.00 - 154.00)

FREE T3 4.39 pmol/L ( 3.10 - 6.80)

Thanks

[Clutter in reply to whisperit]

Whisperit,

Not every hypothyroid patient has low pulse. My heart rate and pulse were high until I was optimally dosed.

Free Thyroxine (FT4) and Free T3 (FT3) are good partly due to high TSH stimulating the gland to produce hormone.

TSH between 5-10 with FT4 and FT3 in normal range is called subclinical hypothyroidism. Some doctors won't treat subclinical hypothyroidism unless the patient is symptomatic. In the presence of positive antibodies most doctors treat when TSH is over range. Read Dr. Toft's comments in thyroiduk.org.uk/tuk/about_... Email [e-mail] if you would like a copy of the Pulse article to show your GP.

[whisperit in reply to Clutter]

that's really helpful. Thank you again, Clutter x

[whisperit in reply to Clutter]

One other question - my symptoms seem severe (I struggle to get out of bed in the morning, and have steadily deteriorated from full time work and mountain biking every weekend to early retirement and finding walking to the end of the road hard work in 2 years.) Yet my thyroid hormone levels are OK - so how could that be the problem (TSH overproduction notwithstanding)???

[Clutter in reply to whisperit]

Whisperit,

TSH is high because the pituitary is not sensing enough T4 and T3. The TSH is flogging the thyroid to produce the T4 and T3 you have. TSH will continue rising until you have Levothyroxine replacement.

[Angel_of_the_North in reply to whisperit]

If you are hypo and untreated, the body tries to compensate with adrenaline which can cause a fast pulse, and even sweats and anxiety type symptoms. So it is quite possible to be overtly hypo and also have a fast pulse

[whisperit in reply to Angel_of_the_North]

That would make sense of my symptoms. What is interesting is that when I first experienced these symptoms, I described them to a friend as feeling as if me body was somehow trying to "jump start" itself - as if the sweats, shakes etc was my body trying to turn the engine over but it wouldn't "catch"! I am sure it's one of those situations where I "know" what is wrong well before the medics have worked it out. The problem has been trying to persuade them of that! Thanks for that x