Hi I’ve had what I thought was plain under active thyroid for 20+ years. I’m fairly sure it’s actually Hashimotos, I have two other related autoimmune diseases and so do a lot of family members. I’d never heard of Hashimotos until recently. I take 100mcg/day of Levothyroxine.
I have many symptoms, the worst being tiredness and chronic insomnia for over a decade. I’ve been reading up a lot recently about vitamin and celiac testing plus going gluten free, and I intend seeing my doctor shortly about this. I’m determined to sort my health out and enjoy life to the full again.
Please can someone tell me what they think of my readings prior to my doctors appointment.
You should ask for thyroid antibodies to be tested. Some doctors think that it doesn't matter if we have antibodies or not but if we do have them we can try to reduce the attack on the thyroid gland which can be done by going gluten-free.
If you've been hypo for 20 years, it is time you re-assessed your blood tests. GP probably wont do them but might surprise you and request them but sometime the lab doesn't do them if your TSH and T4 are in range.
We have two private labs, Blue Horrizon and Medichecks and both do home pin-prick tests. You need and it should be done as early as possible (fasting) and allow a gap of 24 hours between your last dose of levo and the test and take it afterwards. This procedure allows the TSH to be at its highest as that seems to be the only result doctors take notice of and maybe T4 as well.
We need TSH, T4, T3, Free T4, Free T3 and thyroid antibodies.
Your GP should check B12, Vit D, iron, ferritin and folate as all have to be optimal to enable thyroid hormones to work.
Always get a print-out of your results and make sure ranges are stated. Labs differ as do the ranges and it makes it easier for members to respond.
I am not medically qualified but my view on your test results :
T4 14.8 (9-19)
TSH 1.8 (0.35-4.94)
Are that your T4 could be higher and your TSH lower.
Many doctors are content when their patients TSH and T4 are in range but that doesn't always mean the patient doesn't have clinical symptoms, so if you ask for an increase in levothyroxine to bring TSH to 1 or lower and it should also increase your T4.
Not many people can afford private consultations but by reading and asking questions you will soon learn how to go about things to get back to some symptom-free life.
You also need the doctor to check B12, Vit D, iron, ferritin and folate and all should be optimal otherwise symptoms could occur if these are low.
If you feel well your levels are fine. If you are still symptomatic there is scope for a small dose increase to raise FT4 and reduce TSH.
The goal of Levothyroxine is to restore the patient to euthyroid status. For most patients that will be when TSH is 0.3 - 1.0 with FT4 in the upper range. FT4 needs to be in the upper range in order that sufficient T3 is converted. Read Treatment Options in thyroiduk.org.uk/tuk/about_... Email dionne.fulcher@thyroiduk.org if you would like a copy of the Pulse article to show your GP.
Having a confirmed diagnosis of Hashimoto's will not affect your treatment. 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.
Just don't tell them why you have to have a fasting test. My surgery lets me choose the time and don't tell me I cannot have one. People who have to go to work have to have blood tests before they go to work. Ignorant people are not willing to learn or willing to help patients recover their health. TSH is from the pituitary gland anyway and I don't think they know that either.
Make a blood test several weeks ahead and get the earliest test possible. It is nothing to do with the receptionist. You can say you have an appointment elsewhere if they say anything.
If they cause a problem tell them that you are now a member of an NHS Help group Healthunlocked Thyroiduk.org.uk which is approved by NHS and that is the advice you've been given in order to help you recover your health.
If you happen to see your doctor - enquire of him does the TSH have a diurnal range.
Doctors and endocrinologists seem to be unaware that the TSH is variable throughout the day (it is the only one they appear to take notice of) and the earliest is best as TSH is highest then and drops throughout the day. So if we get blood tests later in the day, our TSH will be different to what it would be at 8 or 9 a.m and may mean the difference of getting an increase or not in levo.
Don't tell them you need an early a.m. test for thyroid because they don't understand the tests anyway. They think that a fasting test is only for cholesterol levels but if hypo we will usually have a higher cholesterol as it is one of the many clinical symptoms and would reveal if we were on an insufficient dose as our cholesterol would be raised. An optimum dose helps cholesterol to reduce naturally.
Thank you very much everyone for all your advice. I’ve got a doctors appointment on a Friday, so hope to get things sorted out x
I’ve printed off Dr Tofts paragraph 6 from Pulse to show my doctor. Can someone please tell me what Pulse is and who Dr Toft is. Just want to be fully armed with as much info when I go. Thank you.
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.
All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results
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