Im new here

[ruthchance]

Hi, I'm new here. I'm having problems with my body absorbing my levothyroxine. My first TSH level was 374. The next one after my dosage was upped was 46. Then 2 months later it was 65. Im confused as to why my levels are up and down then up?

[Marz]

Do you have Hashimotos ?

How do you take your levo/T4 and how much ? When were you diagnosed ?

B12 - Folate - Ferritin - VitD - all need testing and ned to be OPTIMAL for thyroid hormones to work.

You also need results for FT4 & FT3 along with TPO & Tg anti-bodies.

You have given very little information making it difficult to help. 😊

[The_will_of_Jill]

welcome ruth! hang in there 🦋

[SlowDragon Administrator]

We need dose increased in 25mcg steps until TSH is around one and FT4 towards top of range. Retesting 6-8 weeks after each dose increase

How much are you currently on? You are ready for next dose increase

Essential to test vitamin D, folate, ferritin and B12 plus thyroid antibodies.

If antibodies are high this is Hashimoto's also called autoimmune thyroid disease.

Add results and ranges if you have them

[jimh111]

Your doctor should have started you off on close to a replacement dose of levothyroxine, around 100 mcg, unless you are elderly. How do you know your body is not absorbing levothyroxine, you would meed an fT4 result to confirm poor absorption. What dose are you taking at the moment?

[ruthchance in reply to jimh111]

400mcg now

[ruthchance in reply to jimh111]

I have hyshimoto's. I was diagnosed in my early 20's and I'm 54 now.

Everything was fine...I was on .125 mcg for 20 yrs. Until a year ago. Then my TSH levels went extremely high ?????

[jimh111 in reply to ruthchance]

In this case they should look into why you are no longer absorbing the levothyroxine (assuming your fT4 is not really high). Could be you have changed when you take your levothyroxine or are taking it with other medications or coffee? Also, possible you have developed a gastrointestinal problem that is affecting absorption. They need to measure your fT4 and fT3 to confirm you are absorbing the levothyroxine and that you are converting T4 to T3. Just whacking up the dose is not appropriate when you have been fine on a much lower dose for so long.

[jimh111]

Guidance to start patients on a low dose and slowly titrate upwards is out of date, although many physicians stick to their old methods. The UK GPnotebook recommends starting on a full replacement dose gpnotebook.co.uk/simplepage... . This is also recommended by the American Family Physician aafp.org/afp/2006/0401/p127... based on this study jamanetwork.com/journals/ja... .

Starting low and titrating up slowly just delays recovery. ruthchance has a TSH of 374 so we can assume the fT4 was low, not marginal hormone deficiency. Also, I attended a talk in Cambridge a couple of years ago where an endocrinologist was asked about patients who can’t tolerate levothyroxine. She said she had come across this but when she started patients on 100 mcg they never had tolerance problems! (Perhaps low dose levothyroxine lowers TSH but there is too little levothyroxine to compensate for the reduced thyroid output).

So, in patients without cardiac issues who are not elderly it is beneficial to start them on a full replacement dose. This only applies to patients conventionally diagnosed with primary hypothyroidism, it doesn’t apply to a therapeutic trial of thyroid hormone in patients with ‘normal’ hormone levels.

[helvella Administrator Thyroid UK in reply to jimh111]

GP Notebook's reference for starting on "full replacement dose" is that infamous 2006 document:

Association for Clinical Biochemistry (ACB), British Thyroid Association (BTA), British Thyroid Foundation (BTF) 2006. UK guidelines for the use of thyroid function tests

Their link to it does not work.

The document its else says it should be reviewed - it wasn't.

The document has an a blatant error in it. And I have been unable to get it corrected.

If that is the basis of their recommendation, well, quite honestly, GP Notebook ought to be ashamed of themselves. Grossly unsatisfactory on numerous levels. Indeed, using a guideline document that is self-admittedly out of date smacks of unethical practice.

[jimh111 in reply to helvella]

The gpnotebook also reference this document bmj.com/content/337/bmj.a80... . I have a copy of the full paper so here is the relevant section: -

Levothyroxine is the treatment of choice for hypothyroidism.8 Although levothyroxine is commonly titrated upwards from a starting dose of 25-50 μg daily, a randomised controlled trial has shown that this approach is not necessary for most patients and is likely to be wasteful of resources.16 So for most patients a full replacement dose of levothyroxine should be started. The exceptions to this are patients aged more than 60 years or those with ischaemic heart disease. The requirement for levothyroxine depends on lean body mass, and a daily dose of 1.6 μg/kg body weight will render most patients euthyroid.17 This dose equates to 100 μg daily for the average sized woman (60 kg) and 125 μg daily for the average sized man (75 kg). When giving a trial of levothyroxine therapy for subclinical hypothyroidism, it is worth starting with close to a full replacement dose (75 or 100 μg daily), on the basis that it would be difficult to be sure if the symptoms might not be caused by hypothyroidism, until a therapeutic dose of levothyroxine has been tried.

The last sentence is very encouraging. However, you are correct the 2006 document is pretty awful. Documents like this contain good and bad points, this really isn't acceptable, when publishing guidance documents extreem care should be taken to make them high quality. Unfortunately, these comments tend to also apply to those who we might consider 'friendly' to our cause, they too can provide good and bad advice (I exclude Skinner and Lowe from these comments). It's really difficult being a thyroid patient - trying to sort out what is good and what is bad advice whilst having a brain damaged by hypothyroidism. I try to work from the original research and ask common sense questions.

[jimh111]

The 100 mcg starting dose applies strictly to patients diagnosed with primary hypothyroidism with an elevated TSH and low fT4. I believe a large number of patients have other forms of hypothyroidism that is usually missed, these need different treatment. Patients with a down-regulated axis (mild central hypo), full central hypothyroidism and other conditions such as endocrine disruption will not get well with levothyroxine only treatment. I won't go into this as I'm drifting a long way off ruthchance's topic.

[jimh111]

Around 2% of UK population, they get diagnosed and treated on this basis. Unfortunately, I suspect some patients with marginal TFT results get misdiagnosed with primary hypothyroidism and are then treated for the wrong form of hypothyroidism.