I am undergoing tests for suspected Sjogrens, am due third set of blood tests at end of June. Symptoms are dry eyes, blurred vision( some of the time) dry mouth, burning skin predominantly in legs ( occasionally just burning in random places) all symptoms much worse after exposure to sunlight! These symptoms are not with me all the time, is this common with Sjrogens. Fatigue hits me and I have to sleep, fortunately I feel better after a good nap. I was also diagnosed with an underactive thyroid in 2005, I have always been on 25mc never had an increase! Is it worth just having the Lip biopsy to get a definite diagnosis!
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Maloo19
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I don't know anything about Sjogrens so can't help there, but if you've been on 25mcg Levo since 2005 then something is very seriously wrong. Please post your current thyroid test results, with their reference ranges, and let's see if we can help you.
What are the reference ranges, they vary from lab to lab. It's essential for the FT4 result to be able to interpret it and see where you are through the range. Do you have FT3 and thyroid antibody results?
Presumably these ranges are from your own GP results. I ask because they are used by the private labs and frequently shown on the forum, we can't use any ranges except those that come from the lab which did our test.
So assuming they came with your results:
TSH. 1.06. (0.27-4.2)
T4 14.9 (12-22)
The aim of a Hypo patient on Levo, generally, is for TSH to be 1 or below with FT4 and FT3 in the upper part of their reference ranges.
You have a nice low TSH but your FT4 is also low at only 29% through range and this is rather strange.
When did you take your last dose of Levo before the test?
What time did you take the test?
Did you eat or drink anything but water before the test?
These are the only tests they seem to have done for the last 17 years!
Have you been having annual tests?
Protocol is that we are started on Levo (normal starting dose is 50mcg, the 25mcg dose is for children, the elderly and those with heart problems), then retest 6 weeks later to check levels and increase dose if necessary. If dose is increased then 6-8 weeks later we should be tested again.
OK so yes I am tested every year, I take my thyroxine about 5 am in the morning, usually blood tests are about 9 am, only ever have water. I have always taken a thyroxine on the morning of test. I only realised there might be a problem with it after coming on this site initially for suspected Lupus now suspected Sjogrens, amazing the things you learn when deviating away from General practice so to speak!
Well, if those are your latest tests I would present your doctor with the following and ask for an increase in your Levo, pointing out that you have been in touch with the charity ThyroidUK (don't mention internet or forum) and they have told you that 25mcg is a starter dose and sent you the following information:
Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine (the magazine for doctors):
"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l. In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l. Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l. This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l).*"
*He recently confirmed, during a public meeting, that this applies to Free T3 as well as Total T3.
You can obtain a copy of the article by emailing Dionne at
tukadmin@thyroiduk.org
print it and highlight question 6 to show your doctor.
You need your FT4 much, much higher than it's current level.
You probably realise now that by taking your Levo at 5am then testing a few hours later is giving you a false high FT4, so goodness knows how low your FT4 would be if tested with the advised 24 hour time gap.
Strongly recommended you get FULL thyroid and vitamin testing
Just testing TSH and Ft4 is is completely inadequate
Always get tested as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies and/or especially if been left too long on ridiculous small dose levothyroxine
Ask GP to test vitamin levels and thyroid antibodies
You may need to get full Thyroid testing privately as NHS refuses to test TG antibodies if TPO antibodies are negative
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
If TPO or TG thyroid antibodies are high this is usually due to Hashimoto’s (commonly known in UK as autoimmune thyroid disease).
About 90% of all primary hypothyroidism in Uk is due to Hashimoto’s. Low vitamin levels are particularly common with Hashimoto’s. Gluten intolerance is often a hidden issue to.
Standard starter dose of levothyroxine is 50mcg (unless over 65 years old).
The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many patients need TSH significantly under one) and most important is that FT4 is in top third of range and FT3 at least half way through range
NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.
Many thanks for your reply..... I think I will definately get a full Thyroid evaluation, At least that way I will know exactly where I am at, who knows all these symptoms could just be due to not being medicated properly! 😊
Also ....guidelines by weight might help push for dose increase
Even though we often we don’t start on full replacement dose, most people need to increase dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until on full replacement dose
Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.
Yes...all of those symptoms could be Sjögrens. I had it confirmed by blood tests and symptoms combined, rather than a biopsy. However, I have since had 2 lip biopsied as was involved in a clinical trial. I found them really uncomfortable and not something to have unless it was going to make a difference to diagnosis or treatment. A high Ana, the ss autoantibody and a very dry schirmer test should be enough? Good luck. 😊
Yes...have been on it for about 6 years now and so far it has been enough. However, symptoms getting worse so rheumy has suggested others...am thinking about it!! I would really try not to have a biopsy unless they need it to diagnose. It does t hurt...just really uncomfortable.
I will avoid it at all cost, at the moment am suffering really badly with burning in my legs, dont get to see Rheumy until 14th July.... have no idea what to take to allieviate the symptoms . 🤷♀️
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