I grew up in the US and was diagnosed with hypothyroidism when I was about 13... I was on synthroid .025mg or Levothyroxine for my entire life ... until I moved to the UK at the age of 30. My first test out here the Dr said my results were normal and there was no need for medication. 13 years later... I still have all the symptoms ... have had about 6 tests all coming back in normal ranges. Can this just go away or do I need to find a new GP?
Background: my entire family, both sides, all have hypothyroidism.
And I have another autoimmune blood disease called APS.
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butlertammy
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Sorry I never replied I completely meant to and forgot.
Yes I found it very frustrating for all my pre-existing conditions when I first moved here... I couldn’t get my migraine medicines and it took years to find another brand that worked... I had to be retested for my APS which takes months and then was never referred to a rheumatoid specialist as my GP decided he would manage it...
So my thyroid issues fell to the bottom of my pile as I got sick of feeling like I was just some spoiled private health care American who was moaning about nothing and wanting free care. Which is SO not the case.
I’m ordering a private test and I’ll post the results.
Yeah I know, I held off on it just so I wouldn’t look to be an immigrant who moved here for free healthcare... vs because my (now ex) husband was British.
Normal means nothing in the UK I'm afraid because of NHS guidelines. Do you have your results to share with us? We need the TSH, T4 & T3 and any antibody results you might have. Also any vitamin results like B12, Iron & Ferritin, Vitamin D and Folate. People who have hypothyroid always have low vitamin levels and they need to be optimal if you have the disease and are taking Levothyroxine. I don't think hypothyroid can go away in my honest opinion.
Getting FULL thyroid and vitamin testing essential
Likely you do need levothyroxine
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 ESPECIALLY if under medicated...or in your case zero medicated
Ask GP to test vitamin levels
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 .
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Is this how you do your tests?
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
Thank you everyone. I thought I’d give my GP one last go so had him do a “full blood work up” last month. I’ve asked for a copy of the results... all he said was my iron was extremely low & I was anaemic, so put me on iron tablets.
I’ll send off for a private test this week as I’m tired of getting the same answer and no solution to all my symptoms.
I’ll follow up one I have those results.
Assuming they come back with hypothyroidism showing do I just take that back to my GP or should I get a referral to a specialist?
Not a good idea to ask the doctor for your results, they'd rather you didn't know. Ask the receptionist for a print-out. It is your legal right in the UK to have one.
You are legally entitled to printed copies of your blood test results and ranges.
The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results
UK GP practices are supposed to offer everyone 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.
Important to see exactly what has been tested and equally important what hasn’t been tested yet
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
When hypothyroid the first thing that frequently happens is vitamin levels drop very low due to low stomach acid from being hypothyroid
Low vitamin levels tend to lower TSH
Essential to get actual results and ranges on vitamin D, folate, B12 and ferritin
Low iron and/or low ferritin frequently linked to hair los
Heavy periods are classic sign of being hypothyroid and will lead to low iron and ferritin ask for full iron panel testing for Anaemia
Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption
This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.
That is all very helpful & interesting... especially your comment on stomach acid... I’m now on my 2nd stomach ulcer in 2 years 😣 ... and had to have a Mirena coil fitted because my periods were so heavy... dry skin... headaches (migraines monthly)... heart racing... I’m always cold... hair loss is about the only symptom I don’t have!
Levothyroxine doesn’t “top up” a failing thyroid....it replaces it
Standard starter dose of levothyroxine is 50mcg and most people need to increase dose slowly upwards in 25mcg steps until on full replacement dose
guidelines on dose levothyroxine by weight
Even if we don’t start on full replacement dose, most people need to increase levothyroxine 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.
Traditionally we have tended to start patients on a low dose of levothyroxine and titrate it up over a period of months. RCT evidence suggests that for the majority of patients this is not necessary and may waste resources.
For patients aged >60y or with ischaemic heart disease, start levothyroxine at 25–50μg daily and titrate up every 3 to 6 weeks as tolerated.
For ALL other patients start at full replacement dose. For most this will equate to 1.6 μg/kg/day (approximately 100μg for a 60kg woman and 125μg for a 75kg man).
If you are starting treatment for subclinical hypothyroidism, this article advises starting at a dose close to the full treatment dose on the basis that it is difficult to assess symptom response unless a therapeutic dose has been trialled.
A small Dutch double-blind cross-over study (ArchIntMed 2010;170:1996) demonstrated that night time rather than morning dosing improved TSH suppression and free T4 measurements, but made no difference to subjective wellbeing. It is reasonable to take levothyroxine at night rather than in the morning, especially for individuals who do not eat late at night.
Starting, and remaining on too low a dose can make it extremely difficult to increase dose. It’s enough to reduce your own thyroid output, but too little replacement hormone.
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