Newly diagnosed: Hello, after 3 blood test... - Thyroid UK

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Newly diagnosed

Macp17 profile image
10 Replies

Hello, after 3 blood test results which were all fluctuating my GP has decided that due to having Thyroid antibodies and lots of symptoms I am going to develop underactive Thyroid so has put me in a trial starter dose if Levothyroxine (25mg) and bloods being retested in 8 weeks. My TSH was 3.55 (range 0.35-4.94). Ferritin had been low last test so had 3 months ferroess, now 54 (range 15-100). However, my Vit D (which they hadn’t previously tested) was completely out of range at 37(range 50-350) so am on a very high dose for 7 weeks. My question is, will 25mg be enough to reverse numbers and get rid of symptoms? I am 53 and also on HRT; Dr said she wanted to start at lowest dose which makes sense, but from majority of answers on here, I thought that was 50mg? What sort of level of TSH can I expect in 8 weeks and what should I be aiming for to be as symptom free as possible?

Sorry for long post!

Thanks

Fiona

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Macp17 profile image
Macp17
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tattybogle profile image
tattybogle

yes ,, it is usually 50mcg . (unless over 65yrs old and / or heart problems, then it's 25mcg)

However , this guideline is for people who are 'subclinical' hypothyroid, (which means TSH over range with fT4 in range) ~ the presence of over range thyroid antibodies and symptoms are used to guide the decision whether to start Levo or not, in subclinical hypo.

You GP has decided to treat 'early' (before TSH is over range), due to several TSH that are relatively high + raised antibodies + symptoms. So they are already stretching the guidelines. Many would not treat at all unless TSH was over range. So the low dose of 25mcg maybe reflects the GP's nervousness about starting a life long treatment without solid 'evidence' to back up their decision. But they seem fairly on the ball (ie knowing that TSH over 2.5 is a indication that there is probably something wrong, and deciding to trial Levo early.)

So there's perhaps not much point pushing GP to start @ 50mcg just now since GP is already 'ahead of the game' in prescribing when TSH is in range.

To be honest, the chances of 25mcg making you feel much better are pretty slim ,in fact it's possible you could feel worse... but at least they have started the process . Be careful how you describe how you feel at next review .. if you say it made no improvement whatsoever , they may stop the trial. (that is what guidelines suggests) What you want is for them to continue and increase to 50mcg then 75 etc

As for timelines... realistically , getting to the right dose and feeling consistently better is always going to be quite a long term proposition . even if we start at 50mcg . You can be looking at several moths to a year to get to a full dose and then several more moths to tweak it to just right for you. Every dose increase needs 6-8 weeks to settle before assessing response. adjusting by 25mcg at a time ( sometimes less ,once near full dose ) until hopefully symptoms stay gone . When starting a new dose we often feel 'nothing much' for a week , then 'improved' for a week or so , then 'a bit less good again' as body adjusts to dose. In my experience , as doses were increased , the periods of feeling better lasted longer each time.

Hope that's some help .

tattybogle profile image
tattybogle in reply to tattybogle

months .... not moths :)

Macp17 profile image
Macp17 in reply to tattybogle

Thank you, very helpful. So if my TSH is less than 2.5 at next blood test, sounds like they’ll assume that’s fine and keep me at 25mg? (Which if I feel better is great, but is that enough for long term symptom relief?) Been 2 days and no negative side effects so far….roll on a bit more energy!🤞🙏🏻😊

tattybogle profile image
tattybogle in reply to Macp17

if GP is a twit they might .... but fight that battle when you come to it.. there is evidence you can use to push for increase if that happens . but i wouldn't worry too much .. if this GP was a complete twit , they wouldn't have even started you on levo yet,

greygoose profile image
greygoose in reply to Macp17

On such a low dose your TSH might even go up a bit. It has been known.

SlowDragon profile image
SlowDragonAdministrator

Have you had B12 and folate levels tested yet?

Or coeliac blood test

High thyroid antibodies confirms autoimmune thyroid disease

Low vitamin levels are extremely common when hypothyroid.

It will take at least 2-3 months to improve low vitamin D, longer for low ferritin

Meanwhile, as tattybogle says…..it’s going to be 6-12 months to get dose levothyroxine slowly increased upwards in 25mcg steps until on correct dose

Levothyroxine doesn’t top up failing thyroid, it replaces it. So virtually everyone ends up on full replacement dose after about a year

Meanwhile working on improving low vitamin levels should improve symptoms

Strictly gluten free diet often beneficial, but GP should rule out coeliac disease first before considering trial on strictly gluten free diet

Macp17 profile image
Macp17 in reply to SlowDragon

Thanks. And yes, was tested for coeliac and that’s come back clear. It’s a new GP who does seem to be on the ball which is great. What should my TSH be as a guide when on optimal dose of Levo? I know it’s all in consideration with F3and F4 (still don’t really understand what the ratios mean after 6 months of being on here!) but she said they don’t routinely test that.

SlowDragon profile image
SlowDragonAdministrator in reply to Macp17

looking for both Ft3 and Ft4 at least 60-70% through range

TSH is frequently below one when adequately treated

Initially after a dose increase TSH will reduce. As your body gets use to increased dose, and metabolism slowly improves TSH will slowly increase

Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels 

Low vitamin levels affect Thyroid hormone working 

Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common. 

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link) 

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies 

As your coeliac result is negative, consider Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse

Perhaps consider starting in New Year

chriskresser.com/the-gluten...

amymyersmd.com/2018/04/3-re...

thyroidpharmacist.com/artic...

drknews.com/changing-your-d...

Non Coeliac Gluten sensitivity (NCGS) and autoimmune disease

pubmed.ncbi.nlm.nih.gov/296...

The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported

nuclmed.gr/wp/wp-content/up...

In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned

restartmed.com/hashimotos-g...

Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.

SlowDragon profile image
SlowDragonAdministrator in reply to Macp17

B12 and folate results?

Macp17 profile image
Macp17

Thanks. B12 was 365 (range 180-640) & serum folate 12.3 (range 3-20). I’ve got next thyroid test in Jan; do you think they will check F3 and F4 as part of this as it’s specifically looking at how the Levo is affecting me, or is it still just TSH levels they’ll look at. Only asking as I may do a Monitor my health test if it wouldn’t routinely be done.

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