Noobie Hypo struggling with dose/GP and ‘feeling well’

[Regenallotment]

Hi, I’m new. Any advice and guidance would be much appreciated. I started feeling dreadful in 2018, (although on reflection having excessive sweats all my life, sleeping through my A Levels in the 90s all add up) was put on HRT for 3 years. It stopped working, felt worse and different GP at the practice sent for blood tests May 2021 and TSH came back 5.5, Aug 2021 4.8 GP reluctant to prescribe re-tested after 3 months finally prescribed 25mg in Aug 2021. Also Transexamic acid for heavy bleeding. All symptoms as you would expect, night sweats, brain fog, memory problems, constipation, period flooding, pain all over, anxiety and depression. Next test Nov 2021 TSH 2.3, told to review in 12 months. By March 2022 all symptoms returned, decided (rightly or wrongly I’m big on agency over my own body) I upped carefully by 1 tablet every o second night and started to feel a bit better. Then had flu and tonsillitis and after 3 weeks was in such a fug of pain and time off work went up a dress size (I’ve been the same size all my adult life, eat well, always preferred gluten free, exercise when I don’t hurt too much) so I decided to double up to 50mg daily taken about 5.45am - wow, felt 10 years younger. Just incredible, oodles of energy, pain gone, bowels to normal, appetite reduced, weight gain halted but not reversed. Have been lightly anxious about upping the dose and also prescription running out. Can’t get GP appointment because local practice is overloaded, managed to wangle a blood test after asking for an repeat prescription and TSH still 2.2. But practice refusing to dispense to me as I’ve used up my meds too quick and results are normal. They aren’t listening to ‘I feel better’ on 50mg. What would you recommend next ? At 50mg I have 2 weeks Levo left I’d really appreciate all and any advice. Thanks sorry for the long post, I’m so delighted to find this forum, been reading for an hour and feel validated and not a hypochondriac after all.

[SlowDragon Administrator]

Standard STARTER dose levothyroxine is 50mcg and dose is increased slowly upwards in 25mcg steps typically over 6-18 Months

GP clearly clueless

Can you see different GP

Alternatively Email Thyroid U.K. for list of recommended thyroid specialist endocrinologist and doctors

[e-mail]

Always test thyroid levels early morning, ideally before 9am and last dose levothyroxine 24 hours before test

Dose levothyroxine should be be increased slowly upwards in 25mcg steps until TSH is around or under one and most importantly Ft4 and Ft3 are at least 50% through range

Just testing TSH is totally inadequate

ESSENTIAL To test TSH, Ft4 and Ft3 together,

plus test thyroid antibodies at least once to confirm if cause of your hypothyroidism is autoimmune thyroid disease.

About 90% of primary hypothyroidism is autoimmune thyroid disease

If left too long on inadequate dose levothyroxine then vitamin levels are likely low

You need vitamin D, folate, ferritin and B12 levels tested

Unless extremely petite likely to eventually need to be on around 100mcg levothyroxine

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...

gp-update.co.uk/files/docs/...

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.

BMJ also clear on dose required

bmj.com/content/368/bmj.m41

healthunlocked.com/thyroidu...

jamanetwork.com/journals/ja...

See also at approx 16 mins into this YouTube clear info of dose levothyroxine

youtu.be/8Xy5i2pMtNA(Not working as expected?)

[Regenallotment in reply to SlowDragon]

Thanks SlowDragon for all this helpful advice. I’ll work my way through this and try again to get a GP appointment.

When consulting alternative/private GPs and using online companies for testing are the meds still via NHS? Looking at all the testing etc I’m trying to figure out how much this is all going to cost us. The free NHS prescription card is very helpful. I’d never have known if it wasn’t for the Asda pharmacy staff.

Thanks again

[SlowDragon Administrator in reply to Regenallotment]

Try different GP at surgery first

Ludicrous to leave you on half the standard starter dose levothyroxine

Levothyroxine doesn’t top up failing thyroid, it replaces it

You should have been started on 50mcg in August 2021

Heavy periods are common hypothyroid symptom and obviously tend to result in very low iron/ferritin

Did GP test iron and ferritin in Aug21

First step is to get FULL Thyroid and vitamin testing

Make appointment with different GP and request they test iron/ferritin, B12, folate and vitamin D plus thyroid antibodies

Explain you have increased levothyroxine to 50mcg and that you need prescription updated to this and thyroid levels retested in 6-8 weeks after increase

Come back with new post once you get vitamin results

On levothyroxine we need OPTIMAL Vitamin levels

Vitamin D at least around 80nmol and around 100nmol maybe better

Serum B12 at least over 500

Folate and ferritin at least half way through range

GP should increase dose levothyroxine

TSH should be under 2 as an absolute maximum when on levothyroxine

gponline.com/endocrinology-...

Replacement therapy with levothyroxine should be initiated in all patients to achieve a TSH level of 0.5-2.0pmol/L.

NHS England Liothyronine guidelines July 2019 clearly state on page 13 that TSH should be between 0.4-1.5 when OPTIMALLY treated with just Levothyroxine

Note that it says test should be in morning BEFORE taking levothyroxine

Also to test vitamin D, folate, B12 and ferritin

sps.nhs.uk/wp-content/uploa...

Graph showing median TSH in healthy population is 1-1.5

web.archive.org/web/2004060...

Aim is to bring a TSH under 2.5

UK guidance suggests aiming for a TSH of 0.5–2.5

gp-update.co.uk/SM4/Mutable...

Persevere - have all guidelines printed and be ready to quote them

healthunlocked.com/thyroidu...

[SlowDragon Administrator]

It should not be difficult to get levothyroxine dose increased slowly upwards in 25mcg steps over coming months

GP should test thyroid antibodies, but often they don’t bother.

If not been tested yet, request antibodies tested alongside vitamins

GP should test vitamin levels at least once.

You will probably need to retest privately as they won’t retest very often. Should be tested at least annually, more frequently if levels are low and improving by supplementing

Improving low vitamin levels can significantly improve symptoms and help get next dose increase in levothyroxine

Thyroid is often necessary to get testing done privately in order to test more than just TSH.

Testing TSH, Ft4 and Ft3 via Monitor My Health 6-8 weeks after each dose increase in levothyroxine

Just testing TSH is totally inadequate and you must get full thyroid and vitamin testing done before considering booking any private consultation

If forced into Seeing an endocrinologist privately

Vast majority of endocrinologists are diabetes specialists and useless for thyroid

Email Thyroid U.K. for list of recommended thyroid specialist endocrinologist and doctors

[e-mail]

[Regenallotment in reply to SlowDragon]

Thanks so much for all the advice, very reassuring. I feel well armed for when the appointment line opens on Monday. I will try again, and this time with evidence. Much appreciated 🦋