First post as I feel I will not get support from GP
Diagnosed overactive March 2006 T.4 12.8 PTh 4.44 was on Thyroxine 75mg for years always felt exhausted etc etc
over years readings varied slightly in 2014 off my own back (because I felt so exhausted always) upped my thyroxine to 100mg day, changed my life felt so well. (note my Husband mobile at this time).
had routine thyroid blood test in April this year TSH 1.32
Recently all has changed have had tender neck, extremely hoarse voice, coughing fits, cold all the time, blood pressure really high, blurred vision, excruciating pain at night in my knuckles and finger joints, palpitations, mood swings, and extremely fuzzy headed, headache that rarely goes, and forgetful. visit to in May (month after routine thyroid test) to my GP (fasting blood test) done, sugars fine, cholesterol 4.16 TSH 0.79 other results also fine.
even though all my symptoms suggest I am underactive (big time) GP said I could be going overactive prescribed blood pressure tablets, another blood test later this month.
I told GP this happened to my Mother she was underactive for years but took no medication at age 64 (my age) she went overactive we only knew when her weight dropped from 19 stone to 8 in a few months and she almost died, eventually having to take radioactive iodine. When I asked GP if this could happen to me she didn't seem to take it seriously.
I wonder now should I lower my thyoxine I feel really really unwell and my blood pressure is not coming down. I have read so much on this site about taking other forms of medication, to stop feeling like this would consider anything as in the midst of this I am only carer for Husband who has dementia and Parkinson's disease my life is full on and exhausting as it is, he has poor mobility, lots of getting him into bed, chair, wheelchair etc, I cannot physically afford to be ill too.
Any wisdom greatly appreciated.
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To be able to interpret your test results, we need the reference ranges please. If you don't already have one please ask at your GP's surgery for a print out and the ranges should be on that, either at the side or in brackets, eg
TSH: 2.5 (0.2-4.2)
For a full picture we need to see results for
TSH
FT4
FT3
Thyroid antibodies
Vit D
B12
Folate
Ferritin
All thyroid tests should be done early morning (first appointment, no later than 9am), fast overnight after evening meal/supper (water allowed and breakfast after blood draw), and last dose of Levo should be 24 hours before blood draw.
Do you take any other medication or supplements? Do you leave at least 2 hours between Levo and these (some need 4 hours).
Thank you both, the more I am reading the more complicated everything appears, my surgery only do TSH testing as standard, I will contact to ask regarding reference ranges, as GP wants me to have another blood test in three weeks I will show her this reply and suggest a broader test. interestingly I mentioned a few years ago about my Mum's thyroid experiences but was assured by that particular clinician that thyroid problems did not run in families
It certainly does run in families. I was adopted and never meet my blood sisters until my late forties. Both my sisters have thyroid problems and have gallbladders removed, also my blood cousins.
Whenever I was asked questions about my family's health, or course I could not answer as I didn't know.
Ask your GP to test vitamin D, folate, B12 and ferritin
These all need to be optimal for thyroid hormones to work well
Very common to have low vitamin levels with hypothyroidism, but especially with autoimmune thyroid disease (Hashimoto's) which is what you most likely have
Low B12 is also extremely common as we age
Is it possible to get some private testing done?
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 Thyroid antibodies are raised
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw).
Is this how you do your tests?
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins
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 special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
Both Medichecks and blue Horizon offer nurse to your home to draw blood if you don't want to do DIY finger prick test. Obviously this is more expensive than going to clinic to get private blood draw
If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).
About 90% of all hypothyroidism in Uk is due to Hashimoto's.
Low vitamins are especially common with Hashimoto's. Food intolerances are very common too, especially gluten. So it's important to get TPO and TG thyroid antibodies tested at least once .
The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many need TSH under one) and FT4 in top third of range and FT3 at least half way in range
All four vitamins need to be regularly tested and frequently need supplementing to maintain optimal levels
NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.
Sorry, I'm a little confused, you say you were diagnosed overactive in 2006 and put on Levothyroxine.
What were you diagnosed with, as further on you speak of your mother's health and her drinking RAI - what was your mother diagnosed with , Graves Disease ?
I'm with Graves Disease diagnosed in 2003 and treated with RAI in 2005. and becoming very ill with what I believe are the long term consequences of RAI and being dosed and monitored on only TSH blood test results.
Prior to my diagnosis I believe I had hypothyroid symptoms for many years but it was never picked up and I just blamed it all on the menopause, and wasn't aware of thyroid disease and doctor's visits always inconclusive.
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