Any suggestions for how to get further answers to these health problems?

[Poshprof]

I have Hashimotos thyroiditis. I have been on levothyroxine 50mcg since diagnosis three years ago. I have gained three stone in weight, I am constantly fatigued, have sleep problems, IBS and the pain in my arms which I have also had since before diagnosis have never diminished. My GP diagnosed fibromyalgia which I don't believe and I have constant spasms in my legs which drive me to distraction. I have no idea where to go with this and get nowhere with my gp. Help!

[shaws Administrator]

Well, your phrase "I have been on levothyroxine 50mcg since diagnosis three years ago. " is shocking.

It is well-known on this forum that a number of doctors have no idea how to diagnose/treat a patient who is hypothyroid. So, on this forum, it is more of a 'Do It Ourselves' and many members are so knowledgeable that they deserve applaud for their help/advice.

If your GP is so smart as to diagnose 'fibromyalgia' I doubt he is an expert on the thyroid hormone T3. If he tested your Free T4 and Free T3 they will probably be low.

drlowe.com/thyroidscience/c...

Make an appointment for a new blood test. If GP wont do all you can have a private test and I'll give a link and if you decide to do this make sure you are well-hydrated a couple of days before and hands/arms are warm. Many members have done this.

The advice is to make your appointment several weeks before as you want the earliest possible blood draw:-

It is a fasting test and allow a gap of 24 hours between your last dose and the test and take it afterwards.

Request, Free T4, Free T3 and thyroid antibodies. If the GP/lab wont do all of these there are recommended labs that will do home blood tests:-

thyroiduk.org/?v=79cba1185463

Ask GP to also test B12, Vit D, iron, ferritin and folate.

Put your results, with the ranges, on a new post for comments.

[fuchsia-pink]

As shaws says, you have been kept on a "starter" dose of levo for 3 years - rather than 8 weeks [at which point you should have been re-tested and meds increased as necessary].

It is pretty well impossible to lose weight when hypo - you need your free T4 and free T3 to be nice and high in range.

You need to take control of your health - your doc obv isn't doing it for you. Get your blood results(and lab ranges) each time - don't accept bland meaningless words like "fine", "normal", "in range", "getting there". Read through posts and replies on here to learn more, and have a good read of helvella 's excellent glossary [pined on the right] to get to grips with the terminology.

Good luck x

[greygoose]

Sounds like you could have deficient nutrients - a lot of hypos have. So, the first step should be to get your vit D, vit B12, folate and ferritin tested. After you've got an increase in levo, of course! You should report your GP for medical negligence for having kept you on a start dose for three years!

When did you have your last blood test? Did you get a print-out of the results? It's your legal right to have one, but you have to ask - they will never just give it to you! Ask at reception. You need to know exactly what was tested, and exactly what the results were. But, I'm willing to bet that your GP is just testing the TSH - which is inadequate - and has no idea how to interprete the results.

[Heloise]

Hi Poshprof, I agree with shaws as to being in shock. Conventional doctors are stubbornly refusing to see the light. You need thyroid hormone in every cell of your body. If your thyroid were normal you might be producing around 300 mcgs of thyroid hormone and I'm certain your 50 mcgs are not fulfilling that requirement. What can your body do without sufficient hormone.........it deteriorates, but it can also heal. There are so many syndromes that develop with this insufficiency and so, then, to make things worse the "doctor" will give you pharmaceuticals to treat those. You must try to follow through with shaws recommendations.

[SlowDragon Administrator]

50mcg levothyroxine is only a starter dose

Guidelines are quite clear dose should be increased upwards in 25mcg steps as fast as tolerated

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 been left under medicated for three years

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 .

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)

Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins

List of private testing options

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus vitamins including folate (private blood draw required)

medichecks.com/products/thy...

Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test

thriva.co/tests/thyroid-test

Thriva also offer just vitamin testing

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test

bluehorizonbloodtests.co.uk...

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off if go on thyroid uk for code

thyroiduk.org/getting-a-dia...

monitormyhealth.org.uk/thyr...

[SlowDragon Administrator]

See different GP

Print out these guidelines

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

NICE guidelines on full replacement dose

nice.org.uk/guidance/ng145/...

1.3.6

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.

gp-update.co.uk/Latest-Upda...

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.

BMJ also clear on dose required

bmj.com/content/368/bmj.m41

bestpractice.bmj.com/topics...

Having been left on totally inadequate dose you likely have very low vitamin levels

Improving vitamins enables it to be easier/quicker to increase dose upwards in 25mcg steps....retesting 6-8 weeks after each dose increase

[SlowDragon Administrator]

Come back with new post once you get full thyroid and vitamin testing

[FuturistFi]

Oh how your story sounds like mine. It took 8 years to get a diagnosis as my blood tests were "normal" and even though I kept telling the GP that my mother had Hashimoto's. I too was diagnosed with fibromyalgia, along with ME, Chronic Fatigue and probably general malingering. I kept fighting and after two ultrasounds which showed a growing goitre, they checked my antibodies and found they were sky-high. I too was put on Levothyroxine and it did nothing for me - I could hardly walk on getting up, had terrible brain fog and ached so badly that anything other than eat; sleep; work was impossible. How I held down a job is beyond me. I went from 8.5st to 12.5st and was practically starving myself to keep further weight from going on. Finally I got a private appointment and was prescribed Liothyronine, which was wonderful, but that was taken from me when the NHS guidelines were changed. Since then, I've moved to NDT and feel like a new person. What I'm increasingly angry about is all those wasted years. You are not alone in this. Take the advice below and don't be fobbed off like I was. Keep fighting until you find something that works for you - it is possible.