How do you take 96mcg Levo: Hi I have no thyroid... - Thyroid UK

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How do you take 96mcg Levo

NadeNud profile image
12 Replies

Hi

I have no thyroid gland due to surgery. I am taking a dose of 100mcg, which was first prescribed after the operation in 2011. For the first two years I had a constant TSH level of around 2.0.

However, over the last year my TSH has been 0.08 which has had the GPs slightly baffled. This has resulted in one doctor cutting my levothyroxine dosage to 50 and sending my TSH level to 24!! I expressed fear ('I am afraid') but she was so determined that I complied...Anyway, that brought me to this forum.

Thanks to member posts, I learned that the treatment for people without a thyroid should be calculated on body weight as there is no suplementary hormone produced in the body. Then I realised that I had lost 12 kilograms over the last 2 years so the rise in my TSH would be a logical consequence.

At present, I am 60kg which should give me a dosage of 96mcg. How should I take this dosage as that exact amount is not manufactured in a tablet. I have been shown a list of values which include 25, 50, 75, 100, 125, 150...

I would be grateful for member's advice.

Many thanks :)

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12 Replies
shaws profile image
shawsAdministrator

I would take the nearest dose, 100mcg. I don't think 4mcg is neither here nor there. I don't know if there is an accurate way, i.e. weight v improvement of symptoms for dosing.

As you have no thyroid at all, I would think that 10mcg of T3 and 50mcg levo might make you feel much better and maybe your GP will prescribe.

Adjusting doses of thyroid hormone according to the TSH level is wrong. When you get blood tests done, have them at the earliest possible appointment not having taken your medication until afterwards. If you take your medication at bedtime, miss this dose and take after blood test.

Always, from now on, get copies of your blood tests, with the ranges, for your own records and so that you can post if you have a query.

NadeNud profile image
NadeNud in reply toshaws

Thanks for the reply.

With the consultation of another GP, I took a dosage of 88mcg which sent me into hypothyroidism for a second time so I think my body is very sensitive.

I will be seeing an Endo in a few weeks so I am hoping for more complex blood work and hopefully a more helpful treatment.

helvella profile image
helvellaAdministrator

Bodyweight is NOT the way to calculate your replacement requirements. All that approach does is give you a hopefully reasonable starting pointing which is unlikely to overdose.

I created a spreadsheet based on several published approaches to calculation dose. Available here:

dl.dropboxusercontent.com/u...

The very fact that your get as many answers as there are formulas rather hints at the imprecision!

There is some evidence that while increase in body mass by adding fat will not alter requirements for thyroid hormone as much as when the mass is added by muscle.

So immediately after a thyroidectomy, use a formula. Thereafter use a combination of how the patient feels and all clinical evidence including blood tests. That is, there is no way of getting to required dose by calculation.

There are ways to achieve very small adjustments in dose. Add up what dose you want to get to would be for a week, get to the nearest 25mcg, then take as even a dose as can be achieved. That is, 7 times 96 gives 672. Round up to 675. You can get there by taking 100 for six days and 75 for one day. Or 100 a day for five days and 87.5 for two days - e.g. Monday and Thursday.

Rod

shaws profile image
shawsAdministrator in reply tohelvella

Great reply, Rod.

in reply tohelvella

Thanks Rod. It took me so long to type my reply below on my phone that your post arrived in the meantime!

helvella profile image
helvellaAdministrator in reply to

And yours is obviously from hard-won experience.

Very useful for the original poster, I hope.

Rod

Hi Nadenud, I think the weight dosage link is for initial dosage, but I agree that when I lost weight I needed to reduce dose, based both on blood results and symptoms. A drop from 100 to 50 is a big change, so not surprising you were undermedicated. You might be better on 75 mcg.

Like you I find small changes make a big difference. I 'fiddle' by adding an extra 25 mcg every so often and averaging it out. Eg, 75 mcg daily, with an extra 25 mcg 3 times over 14 days works out at 80 mcg on average. I find that changes as tiny as 5 mcg do make a difference. It's very much trial and error and it can take 4 - 6 weeks or longer to notice the effect.

Hennerton profile image
Hennerton

I am not convinced that basing dosage on body weight always works. I have had thyoidectomy and weigh very little (less than 48 kilos). On that basis I would be on 76.8 Levo and would be climbing walls on that dose, if I could even manage to get out of bed. I think you must allow for different bodily absorption rates and forget TSH. Better to have free T3 and free T4 tested to see how much is actually reaching your cells and just go by how you feel and what symptoms you have. Easier said than done, I am afraid, with our current system of dosing by TSH but you can try to fight the system like the rest of us here.

By the way, the rise in your TSH would mean you were very under medicated on 50 mcg Levo. A loss of 12 kilos might mean you were over medicated or simply that your body is now getting back to a normal healthy weight after the problems which caused you to have TT. Are you now underweight? If so, you and must be rare people who have lost weight after TT and not gained it.

NadeNud profile image
NadeNud in reply toHennerton

Hi

Thanks for the reply.

In answer to your question, I was overweight by about one stone/12kg at the time of my thyroidectomy after having babies and allowing myself more cake than I should have! I then put on a bit more weight which probably could have been related to the Levothyroxine....I just thought it was too many calories...

I then reduced my weight but it got very difficult after a certain point last year when I was unknowingly slightly hypothyroid (around 6.0). I think that level may have been due to over exertion and (stupidly) combining my Levo with a very milky cup of tea (I didn't realise that milk in the tea could inhibit absorption).

I now realise the importance of being educated on this condition...I just thought that one pill a day wasn't so bad...I never anticipated fluctuations and the bodily discomfort of hypothyroidism...

Clutter profile image
Clutter

Nadenud, the weight/dose ratio is only used to calculate the initial dose after thyroidectomy. Thereafter the dose should be tirated until the patient's hypothyroid symptoms are resolved. Unfortunately, too many doctors treat the lab results and not the patient resulting in dose and TSH yo-yoing as they try to dose to force the TSH into a range.

100mcg is a relatively small dose for someone without a thyroid but if you have no symptoms it is fine. TSH 0.08 is low but not suppressed and your doctor was quite wrong to reduce your Levothyroxine (T4) by 50mcg to raise it as demonstrated by your TSH rising to 24.

I'm also thyroidless, weigh 49kg and am prescribed 100mcg T4 plus 40mcg Liothyronine (T3). My TSH is suppressed <0.01, FT4 and FT3 are high in range.

NadeNud profile image
NadeNud

Thank you all for your hard gained knowledge and advice. Very much appreciated!

Helenabc profile image
Helenabc

As someone who probably has no thyroid function, I just want to say that, for me, changes in daily dosage as little as 6mcg have a profound effect on my health and quality of life. The fine adjustment matters very much.

Doctors are so wrong to think in terms of 50mcg up or down!

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