Symptoms back

[bellsjet]

I have been on levothyrixine for years 50mg. My last tsh was 4.9 I am due test next week I have lost most of eyebrows again and I'm really worried about memory I am 61 years old but forgetting how to do things I do all the time do you think my medication could be problem.

[SlowDragon Administrator]

50mcg levothyroxine is only the standard STARTER dose

You should have had dose increase years ago

On levothyroxine the aim is to increase the dose slowly upwards in 25mcg steps until TSH is around or under 1

Make an appointment to see/speak with GP

Request next increase to 75mcg daily

Which brand of levothyroxine are you currently taking

Thyroid levels should be retested again in another 2-3 months

Likely to need further increase to 100mcg at next test

Meanwhile get vitamin D, folate, ferritin and B12 levels tested by GP

Highly likely to have vitamin deficiencies as direct result of being left inadequately treated for years

Please reread my reply in your previous 3 years ago

healthunlocked.com/thyroidu...

And similar information to your post 5 years ago

healthunlocked.com/thyroidu...

[bellsjet in reply to SlowDragon]

Levothyroxine 50mg brand Teva. When I read back 3 years ago I had forgot my memory was bad then (proof I'm getting worse) reading all my replies thank you very much to everyone I am determined to make sure when ring for results not to be fobbed off

[SlowDragon Administrator in reply to bellsjet]

Your brain and your heart need lots of thyroid hormones to function well

You have been badly let down by your GP leaving on far to small a dose levothyroxine

Many people find different brands of levothyroxine are not interchangeable

Teva brand upsets many people

Have you always had Teva ?

Teva is only brand that makes 75mcg tablets

If you prefer a different brand ask for 25mcg tablets to add to 50mcg tablets

Mercury Pharma (Advanz) or Wockhardt make 25mcg tablets

increase in levothyroxine

As you have been left far too long on too low a dose….it can then be difficult to increase…you need to do so SLOWLY

Initially suggest you take 50mcg and 75mcg alternate days for first 3-5 weeks, before increasing to 75mcg every day

Retest 6-8 weeks after getting on 75mcg daily

Likely to need further increase(s) after that

Update us on your progress with GP,

Also

Come back with new post once you get vitamin results, then members can advise on what vitamin supplements you need

[SlowDragon Administrator]

Comprehensive list of references for needing LOW TSH on levothyroxine

healthunlocked.com/thyroidu....

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

gponline.com/endocrinology-...

NHS England Liothyronine guidelines July 2019

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

Page 9

Test for Deficiency of any of the following: Vitamin B12, Folate, Vitamin D, Iron

See page 13

1. Where symptoms of hypothyroidism persist despite optimal dosage with levothyroxine. (TSH 0.4-1.5mU/L)

Graph showing median TSH in healthy population is 1-1.5

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

How much do you weigh in kilo

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.

[SlowDragon Administrator]

You might find this post helpful too by Sneedle

healthunlocked.com/thyroidu...

If you can before appointment

write in requesting 25mcg dose increase in levothyroxine

including copies of relevant guidelines

include tick list of symptoms here

Symptoms of hypothyroidism - tick all that apply

thyroiduk.org/wp-content/up...

if you get a face to face appointment take along a supportive witness (preferably male)

Also request in writing that GP test vitamin D, folate, ferritin and B12

[FancyPants54]

Yes, your medication is a problem. You are not taking anything like enough of it to be well.

Great advice above from SlowDragon. Please take it. Act on it.

You must realise that you have to take charge and drive your GP for what you want. Not wait for them to realise their mistakes. Don't take no for an answer. If one refuses to increase your dose (although I doubt they will if you tell them how unwell and worried you are) then book to see another one immediately.

Don't let them fob you off. Tell them you want to increase your medication slowly until your TSH is 1 or below to see how well you feel then.

Good luck. We've all been there. I'm just surprised you lasted years on it being so low. You are not alone though, my friend has been on 25mcg for years. She won't listen. She has terrible weight and health problems. That 25mcg is doing her more harm than good.

[Sparklingsunshine in reply to FancyPants54]

I think a lot us ( and I was one myself) have a belief that GP's know best and will make us well. I was in the same boat, started on 50mcg of Levo, had a blood test a few weeks later and because my TSH was now in range, that was good enough, according to my GP.

It wasnt until I joined this forum that I realised just how proactive we have to be, in terms of dosage, timings, other supplements and lifestyle factors. The onus is really on us to manage our health, which is something of an eye opener.

And to realise that doctors dont know what's best for us, dont always act in our best interests as they dont have to walk in our shoes and put up with feeling crap everyday. I'm very grateful I found this forum and have learnt a lot 😃

[FancyPants54 in reply to Sparklingsunshine]

You are dead right! I wasn't terribly trusting to start with, but it's still been an eye-opening experience. Now I have Afib too and I don't trust them on that either.

The same friend I mentioned has had a bit of a shock recently though, so who knows, she might start to think differently. Her dad is 86. Always active and engaged he suddenly sat in a chair and stayed there when he was 80. So out of character for him, and at the time he was caring for his wife too, that he went to the GP and was diagnosed hypothyroid. They put him on Levo, wound his dosage up and he was back to normal.

For some completely unfathomable reason, a GP recently took him off Levo completely. Cold turkey! At 86!! My friend said he has hardly been able to get out of bed, let alone look after himself. Turns out, when the practice finally noticed there was something wrong, his TSH was 88!

So now he has to continue to suffer the long, slow process of getting back onto the medication and getting his dose back up where it needs to be.

I don't know about you, that I think that's gross malpractice and negligence. He's such a bright and lovely man. As soon as she told me about this last week I went into "transfer of information" mode. I've advised her how and when to get his bloods done and what not to accept etc. Maybe this will make her rethink her own hypo meds situation.

[Sparklingsunshine in reply to FancyPants54]

Yes that is shocking, if the NHS ignores you you get worse, however if they insist on you having a blood test and then fiddle about with your dose because your TSH is too low, you get worse. Frankly they're a blooming menace. Hope your friend's dad feels better soon.

[SovietSong]

Absolutely shocking by your GP.Don’t let them fob you off by giving you antidepressants or painkillers.Do not leave the surgery without them increasing your dose to 75 and then as the others say retest in 6-8 weeks where you will probably need another increase to 100.Most people need somewhere around 100-150 daily to feel well.I wonder how many people have been living under medicated for years only to be told by their doctor “it’s fine your numbers are in range”.My doctors exact words to me were “your thyroid levels are beautifully balanced” and when I kept complaining about constant headaches/stomach pain was told “they are much of a muchness” and recommended I take paracetamol.Completely clueless.

[Sparklingsunshine in reply to SovietSong]

I had exactly the same experience. As soon as my TSH dropped to around 4.5 or so on 50mcg of Levo I was allegedly cured, hallelujah.