Thanks for replying. I live in Hertfordshire but will travel to see the specialist. I am diagnosed with under active thyroid about 30 years ago. I take 75 mcg or 125 mcg of thyroxine depending on the result. But it fluctuates quite a lot specially for the past two years. Not sure what's causing it to fluctuate so much. I have seen an Endo in the past but not much help! So would like to have investigated thoroughly. As I believe there must be a reason.
Any help would be grately appreciated. Also looking for endocronoligist for my 23 year old daughter who suffers from PCOS which means her periods are every 3 to 4 months and is getting hair growth on her face which is quite embarrassing.
Thanking you,
Meena
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I would imagine it's fluctuating because your doctor is dosing by the TSH - a very bad thing to do and will never give you stability. He needs to dose by the FT4 at the very least, but the FT3 would be better.
First thing is, do you have any actual blood test results?
if not will need to get hold of copies.
You are legally entitled to printed copies of your blood test results and ranges.
UK GP practices are supposed to offer online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need enhanced access to see blood results.
In reality many GP surgeries do not have blood test results online yet
Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up. They can no longer charge for printing out, rules changed after May 25th 2018
Can you add most recent results and ranges for TSH, FT3 and FT4, plus have you also had TPO and TG thyroid antibodies tested
Some of your symptoms sound like low vitamin levels, extremely common with hypothyroidism especially if you have autoimmune thyroid disease also called Hashimoto's diagnosed by high thyroid antibodies
Have you had vitamin D, folate, ferritin and B12 tested. Add results and ranges if you have them
Ask GP to test them and both thyroid antibodies if not been done
Assuming it is Hashimoto's (likely as your daughter has a PCOS which is very closely related)
About 90% of all primary hypothyroidism in Uk is due to Hashimoto's
Essential to test vitamin D, folate, ferritin and B12. Always get actual results and ranges. Post results when you have them, members can advise
Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels. Low vitamin levels affect Thyroid hormone working
Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten.
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies
Just dosing according to TSH, or TSH and FT4 is completely inadequate
For full Thyroid evaluation you need TSH, FT4, FT3 plus TPO and TG thyroid antibodies and also very important to test vitamin D, folate, ferritin and B12
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or 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 money off offers.
All thyroid tests should ideally be done as early as possible in morning and fasting. When on Levothyroxine, take last dose 24 hours prior to test, and take next dose straight after test. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)
Getting full testing is first step. Improving low vitamins next and then getting Levo dose correct. Plus many Hashimoto's patients find strictly gluten free diet helps or is essential
But only make one change at a time or add one supplement at a time
Come back with new post once you have results and ranges on all these
Meanwhile Email Thyroid UK for list of recommended thyroid specialists, some are T3 friendly
Thank you so so much for such detailed input. I will for sure go for all the tests you mentioned. It's eye opening! I was unaware of all this.I only have thyroid test done and on this basis my Gp changes the dose. Will get all the vitamin tests done too.
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