Approach with GP

[EclipseMoon]

hi all,

I have an upcoming GP phone appointment (28th) following my latest abnormal results shared on this thread:

healthunlocked.com/thyroidu...

I’ve been trying daily to get an appointment sooner, but I’m told my GP has no availability and has specifically asked to speak to me but marked it as non-urgent.

I’ve been feeling much worse recently, it has affected my work ability, my social ability and more. I cried this morning as the chilblains are back on one of my hands, after only finally subsiding in June. I’m in my thirties and suffering from something my 85 year old grandmother gets., it’s upsetting and means I have to work with gloves on. They’re incredibly painful and I’m told can be caused by hypothyroidism.

Only two of my recent blood tests were performed correctly pre 9am, fasting, my GP never guided me on this, I took the advice from this forum and thankfully saw the results clearly show my elevated TSH. My bloods have been showing elevated TSH of over 5 for more than ten years, I have struggled with pretty much every single text book symptom of hypo. The brain fog, joint pain, fatigue and a constant feeling of a lump in my throat/feeling hoarse being the worst of late.

Over the years I’ve seen rheumatologists, chronic pain specialists, been to acupuncture you name it. Each time I’m told I’m perfectly healthy and have I considered that my symptoms may be in my head caused by stressful life events (such as losing my parents). Of course I considered the stress element, took up meditation, exercise, therapy all completely fine, relaxed and considered normal on the mental health side of things. The symptoms are still here. I used to frequently go to my GP from a teen due to abnormal and irregular periods, I was even hospitalised at one point because I bled so much in a short space of time I collapsed. No one ever treated me to helped, I was just told to take the pill and get on with life. Apparently perfectly normal for a woman! I could rant on…

Anyway, I’m at my wits end and want to have a productive discussion with my GP on the 28th. I don’t want to be palmed off by being told to do another blood test, I’m hoping there’s something I can say to convince them to start me on a trial dose of levothyroxine, in my mind if I trial it and see absolutely no improvement in symptoms even when my TSH etc falls in line, then I’d be willing to consider the symptoms are caused by something else. I find it so upsetting having to fight to be taken seriously, always being told im not urgent, which is true, but the symptoms are horrendous for me. Im getting married in March and im dreading being how I am now, hair and nails look terrible, in pain and falling asleep by 8pm.

Thanks for reading!

[SlowDragon Administrator]

Results show you should be starting on 50mcg levothyroxine

You will need GP to add note to prescription saying lactose intolerant and needs lactose free levothyroxine

Are you now taking daily B12 supplement. Have you added daily vitamin B complex yet

Need to test vitamin D

Test twice yearly via NHS private testing service when supplementing

vitamindtest.org.uk

Vitamin D mouth spray by Better You is very effective as it avoids poor gut function.

There’s a version made that also contains vitamin K2 Mk7.

One spray = 1000iu

amazon.co.uk/BetterYou-Dlux...

It’s trial and error what dose we need, with thyroid issues we frequently need higher dose than average

Vitamin D and thyroid disease

grassrootshealth.net/blog/t...

vegetarian and low ferritin…now supplementing

You need full iron panel test 3-4 times per year on iron supplements

[EclipseMoon in reply to SlowDragon]

Thank you. I’ve ordered a private test anc I am now taking the supplements mentioned. I had a vitamin D test a while ago which was ok in range but I’ll look into the sprays.

Surprisingly my doctors surgery called me a few moments ago and I spoke to a doctor I’ve never met. He kept telling me my TSH was slightly above range and T4 normal but on the low side, so he’ll write a prescription for 25micrograms…I feel like they just wanted to stop me asking!

I have to go back in 6 weeks for a follow up test. I’m highly doubtful that the tiny dose will do anything at all.

I’ll be doing another private test first which is a full thyroid function, t4,t3 TSH, antibodies etc then I’ll take it and see. I can share those private results here and with my GP

[SlowDragon Administrator in reply to EclipseMoon]

Standard STARTER dose is 50mcg

However you have been hypothyroid a very long time so you may need to start slowly

Dose will be increasing slowly upwards in 25mcg steps over 6-18months

guidelines on dose levothyroxine by weight

Even if we frequently start on only 50mcg, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or near 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.

Also here

cks.nice.org.uk/topics/hypo...

pathlabs.rlbuht.nhs.uk/tft_...

Guiding Treatment with Thyroxine:

In the majority of patients 50-100 μg thyroxine can be used as the starting dose. Alterations in dose are achieved by using 25-50 μg increments and adequacy of the new dose can be confirmed by repeat measurement of TSH after 2-3 months.

The majority of patients will be clinically euthyroid with a ‘normal’ TSH and having thyroxine replacement in the range 75-150 μg/day (1.6ug/Kg on average).

The recommended approach is to titrate thyroxine therapy against the TSH concentration whilst assessing clinical well-being. The target is a serum TSH within the reference range.

……The primary target of thyroxine replacement therapy is to make the patient feel well and to achieve a serum TSH that is within the reference range. The corresponding FT4 will be within or slightly above its reference range.

The minimum period to achieve stable concentrations after a change in dose of thyroxine is two months and thyroid function tests should not normally be requested before this period has elapsed.

[EclipseMoon in reply to SlowDragon]

Thanks- I’m thinking of using the private test next week as a baseline then starting this 25mg dose and seeing how I feel after a while. I suspect it takes some time for there to be any change, so maybe at the 6 week retest I can see if I feel any better/worse

[SlowDragon Administrator in reply to EclipseMoon]

Yes retest 6-8 weeks after each increase

thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

[EclipseMoon in reply to SlowDragon]

Glad for the advice here so I can get things tested correctly! 🙂