Still on the bus....just! Need advice please. - Thyroid UK

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Still on the bus....just! Need advice please.

Caffeinefreezone profile image
11 Replies

Thankyou for you invaluable advice last time. Currently on 50mcg levo since June. Felt improvement for 2-3 weeks. Now feel shot with the tranquilliser dart, and depressed, gaining weight again etc.Latest bloodwork:

TSH 1.9 (.27-4.2) prev test 3.39

FT4 17.1 (11.9-21.8) prev 15

FT3 4.6 (3.9-6.8) prev 4.8

My HDL cholesterol increasing 1.88 (1.15-1.68) Overall now 5.6 (3.7-5.2)

And not sure what Eosinophils indicate but mine are 0.51 (0.02-0.4)

Vit D 128 (50-200) much improved!

Ferritin 82 (15-300)

Healthy pescatarian diet. 30kg weight gain since symptomatic 6 years ago .😔

All advice gratefully received🙏

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11 Replies
TiggerMe profile image
TiggerMe

Time for an increase... have they checked out your ferritin, folate, B12 and Vit D levels?

TSH 1.9 mIU/L (0.42 - 4.2) 39.2%

Free T4 (fT4) 17.1 pmol/L (11.9 - 21.8) 52.5%

Free T3 (fT3) 4.6 pmol/L (3.9 - 6.8) 24.1%

T4:T3 Ratio 3.717 

Caffeinefreezone profile image
Caffeinefreezone in reply to TiggerMe

Thankyou - that's reassuring and thankyou for doing the numberwork-I can barely add single numbers at the moment!

SlowDragon profile image
SlowDragonAdministrator

make an appointment and request next increase up to 75mcg

which brand of levothyroxine is your 50mcg

Ideally don’t change brand when increasing to 75mcg

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 

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)

Aristo (currently 100mcg only) is lactose free and mannitol free.

March 2023 - Aristo now called Vencamil

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.

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).

Discussed here too

healthunlocked.com/thyroidu...

Caffeinefreezone profile image
Caffeinefreezone in reply to SlowDragon

Thank you for all that info SlowDragon. I will read it slowly & try to get a handle on it all. I've only had Teva, so I don't really know if it suits me best. But I will try to be consistent. Endo appt later this week so will hopefully be on a higher dose. Really appreciate your posts. So helpful.

SlowDragon profile image
SlowDragonAdministrator

Levothyroxine doesn’t “top up” failing thyroid….it replaces it

So once we start on replacement almost everyone will eventually end up on full replacement dose

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.

humanbean profile image
humanbean

There are lots of causes for high eosinophils. This link is a good one :

labs.selfdecode.com/blog/eo...

Physiogran65 profile image
Physiogran65

Hi caffeinefreezone,I honestly don't know what to suggest other then asking GP for ans increase in meds and a referral to the endocrine clinic..

I just know the feeli g of fatigue never really goes away.. but u kinda just push on.. I dri k lots of water that helps when eating a healthy diet to help reduce and keep weight under control.

I am on a cracking dose of levo and I have days where I feel ok, but also days when I am exhausted.. ans motivation has just about gone .as hard as it is u have to be really honest with ya gp and don't be fobbed off.

Caffeinefreezone profile image
Caffeinefreezone in reply to Physiogran65

Thankyou for that. Lots of good advice. I've always had a careful diet (because of what I assumed was a slow metabolism). Spoke with endo today, who is satisfied with my bloodwork and recommends I stay on 50mcg Levo only. I feel beyond disappointed. I never lack motivation; just energy & wherewithal. I think I'll have to try for a second opinion. It's taken me two weeks to have the arm strength to wash my hair. I'm not really ready to accept that this is as good as it gets...

I’m afraid that you may have to if you follow this endo’s advice. 50 mcg Levo is not enough.

You may find that even when you’re optimally medicated you always have elements of fatigue.

Are your vitamin levels optimal?

Caffeinefreezone profile image
Caffeinefreezone

Thankyou. Yes all vits now optimised. It's just this gallstone attack that's really thrown me on top of everything else. It just feels like there's something new and unpleasant every week! Hey ho....

SlowDragon profile image
SlowDragonAdministrator

Get next dose increase in levothyroxine asap

vast majority of endocrinologists are diabetes specialists

List of thyroid specialists and endocrinologists

healthunlocked.com/thyroidu...

no B12 or folate results

ALWAYS test thyroid early morning, ideally before 9am, only drinking water between waking and test and last dose levothyroxine 24 hours before test

Have you had both TPO and TG antibodies tested?

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