Severe issues

[Goldengirl69]

Hello, I'm at end of My Tether. I got severe neuropathy, chest infection constant, mucus throat, ear pain, heartbeat in ear. Cough, extreme red eyes. Headaches. Swollen cheeks. Foggy head. Nausea. Very dark pigmentation. Diareer , wee extreme . Can anyone know what it is ??

[SlowDragon Administrator]

previous post 5 months ago

healthunlocked.com/thyroidu...

Showed you were on inadequate dose levothyroxine

TSH almost 5 and on 75mcg dose levothyroxine

Did you get increase in dose to 100mcg

Which brand of levothyroxine

Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine

For full Thyroid evaluation you need TSH, FT4 and FT3 tested

Also both TPO and TG thyroid antibodies tested at least once to see if your hypothyroidism is autoimmune

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum

what vitamin supplements are you taking

Diarrhoea

Are you lactose intolerant

[Goldengirl69 in reply to SlowDragon]

Hi Low Dragon, thanks for geting back. No I haven't gone back to doctors yet. But I do take 100 mcg mostly anyway. I order more online. The make are Accord and Tevo. I just so Sick of the Doctors , sometimes they do say my Thyroid is low , and they don't care to Put up dose . I have blood tests now and then. They don't even give me results Sometimes. I do take ferritin, folate, b12 , calcium and vitamin d . I don't really know how often I should take them. I guess , it's now and again. I will try force myself to go Doctors Friday , and ask they raise it to 100mcg . I will mention I need an antibodies test to. I forgot to say my heart is slow to.

[SlowDragon Administrator in reply to Goldengirl69]

Request TSH, Ft4 and Ft3

Plus vitamin D, folate, ferritin and B12

If TPO and/or TG thyroid antibodies have ever been high at any test in past that confirms cause of your hypothyroidism is autoimmune thyroid disease aka Hashimoto’s

Make sure you test early morning ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test

Stop any supplements that contain biotin (eg vitamin B complex) 5-7days before test

Levothyroxine is an extremely fussy hormone and should always be taken on an empty stomach and then nothing apart from water for at least an hour after

Many people take Levothyroxine soon after waking, but it may be more convenient and perhaps more effective taken at bedtime

verywellhealth.com/best-tim...

markvanderpump.co.uk/blog/p...

markvanderpump.co.uk/blog/p...

No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap.

Some like iron, calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away

(Time gap doesn't apply to Vitamin D mouth spray)

If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test

If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal

[SlowDragon Administrator in reply to Goldengirl69]

The make are Accord and Tevo.

Teva upsets many people

Many people find Levothyroxine brands are not interchangeable.

Most easily available (and often most easily tolerated) are Mercury Pharma or Accord

Mercury Pharma make 25mcg, 50mcg and 100mcg tablets 

Mercury Pharma also boxed as Eltroxin. Both often listed by company name on pharmacy database - Advanz

Accord only make 50mcg and 100mcg tablets. Accord is also boxed as Almus via Boots, 

Wockhardt is very well tolerated, but only available in 25mcg tablets. Some people remain on Wockhardt, taking their daily dose as a number of tablets 

July 2024

Crescent levothyroxine. Dosages: 12.5, 25, 50, 75, 100

(Not yet known if all approved dosages are or will be available).

Excipients: lactose monohydrate, maize starch, croscarmellose sodium, gelatin and magnesium stearate.

Lactose free brands - currently Teva or Vencamil only

Teva makes 25mcg, 50mcg, 75mcg and 100mcg

Many patients do NOT get on well with Teva brand of Levothyroxine.

Teva is lactose free.But Teva contains mannitol as a filler instead of lactose, which seems to be possible cause of problems. Mannitol seems to upset many people, it changes gut biome 

Teva is the only brand that makes 75mcg tablet.

So if avoiding Teva for 75mcg dose ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half

But for some people (usually if lactose intolerant, Teva is by far the best option)

Vencamil is lactose free and mannitol free. originally only available as 100mcg only, but 25mcg and 50mcg tablets became available Sept 2024

March 2023 - Aristo now called Vencamil

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

How to get Vencamil stocked at your local pharmacy

healthunlocked.com/thyroidu...

Helpful post about different brands

healthunlocked.com/thyroidu...

List of different brands available in U.K.

thyroiduk.org/if-you-are-hy...

Posts that mention Teva

healthunlocked.com/search/p...

Teva poll

healthunlocked.com/thyroidu...

Once you find a brand that suits you, best to make sure to only get that one at each prescription.

Watch out for brand change when dose is increased or at repeat prescription.

Government guidelines for GP in support of patients if you find it difficult/impossible to change brands

gov.uk/drug-safety-update/l...

If a patient reports persistent symptoms when switching between different levothyroxine tablet formulations, consider consistently prescribing a specific product known to be well tolerated by the patient.

If symptoms or poor control of thyroid function persist (despite adhering to a specific product), consider prescribing levothyroxine in an oral solution formulation.

academic.oup.com/jcem/artic...

Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).

And here

pharmacymagazine.co.uk/clin...

Discussed here too

healthunlocked.com/thyroidu...

[Goldengirl69 in reply to SlowDragon]

Thanks so much for all the fab info you have given me here . I will get back to u on that tonight or Tommorow. I have a b8g worry my hands go Purple and I get very cold for ages at times. Do u kn9w what that 8s ?

[Goldengirl69 in reply to Goldengirl69]

I have to Confess , I do take levo all over the place and my mind is bad to severe neropathy and sometimes it possible I only take 50 mcg I got no-one to help me . I cant think straight

[SlowDragon Administrator in reply to Goldengirl69]

Both suggest inadequate dose levothyroxine……not surprising if last test TSH was almost 5

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 somewhere near full replacement dose (typically 1.6mcg levothyroxine per kilo of your weight per day)

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

bnf.nice.org.uk/drugs/levot...

Some people need a bit less than guidelines, some a bit more

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

gponline.com/endocrinology-...

Graph showing median TSH in healthy population is 1-1.5

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

Comprehensive list of references for needing LOW TSH on levothyroxine

healthunlocked.com/thyroidu....

onlinelibrary.wiley.com/doi...

If symptoms of hypothyroidism persist despite normalisation of TSH, the dose of levothyroxine can be titrated further to place the TSH in the lower part of the reference range or even slightly below (i.e., TSH: 0.1–2.0 mU/L), but avoiding TSH < 0.1 mU/L. Use of alternate day dosing of different levothyroxine strengths may be needed to achieve this (e.g., 100 mcg for 4 days; 125 mcg for 3 days weekly).

[Goldengirl69 in reply to SlowDragon]

Have a great night 🌙 🙂

[Goldengirl69]

Thanks so much again, I feel I maby need even more than 100. I'm nearly 14 stone .

[Goldengirl69]

Why are doctors so bad . I hear thos common Problem , where People underdosed.

[Rainbow-Lover]

Sorry. Only just noticed this post .

Dark pigmentation can be a sign of very low cortisol / Addisons

I know you’re tired of seeing doctors but you may need to go again and talk about this

healthline.com/health/addis...

Goldengirl69

[Rainbow-Lover in reply to Rainbow-Lover]

Edit

Compare your symptoms with this list. Ignore your weight gain (thyroid related)

Goldengirl69

nhs.uk/conditions/addisons-...