Has anyone else had levothyroxine dose reduced because slightly tipped into hyperthyroidism, only to have symptoms come back within a week?

[FutureTeff]

blood tests have recently shown I have very slightly become hyperthyroid.

[waveylines]

Can you post the results with ranges. What were you taking, how much and what has it been reduced to. What were your symptoms before reduction, what are your symptoms now. Difficult to say without. Sorry.

[FutureTeff in reply to waveylines]

Hi Wavylines, thank you for your response. My latest blood test was free t4 of 22.6 and TSH OF 0.02

I’d been taking Levothyroxine for 6 months and on 100mg for the last two of that and had recently seen an improvement to my symptoms, less tired, more energy, some weight reduction due to less water retention.

Following bloods, my endocrinologist reduced the dose to 75mg and within a week I have noticed a significant increase in my symptoms again.

Any advice would be appreciated.

[waveylines in reply to FutureTeff]

Can you pop the ranges on too? They are the figures in brackets & vary from lab to lab. It look like your ft4 is likely to be at the top of the range based on my labs ranges. Endos generally don't like a suppressed TSH, especially on levothyroxine.

Why not try alternate days of 75/100?

Did your endo check the Ft3. This is the useable form of thyroid hormones Some people don't convert well resulting in feeling unwell even if ft4 is high in range.

Secondly have you had blood tests fir: folate, ferritin B12 & vit D? Commonly low in hypothyroidism and we need them optimal (not just in range) to feel well and to make best use of the thyroid hormones. Your GP can check these. Always get copies of all blood tests. You are entitled to them.

Lastly always test fasting, no levo foe 24,hrs before, preferably around 9ish in the morning when TSH is at highest.

[Jaydee1507 Administrator]

Welcome to the group.

What you mean are that you have become over replaced. Its not possible to be hyperthyroid if you are hypo.

Do you have a copy of your latest blood results that you can share with us? You are legally entitled to a printed copy of your results, ask at GP reception. In England you can get the NHS app and ask for permission to see your blood results on that by asking at GP’s reception.

Did you do the test as per the protocol recommended here? Recommended blood test protocol: Test at 9am (or as close as possible), fasting, last levo dose 24hrs before the blood draw, last T3 dose 8-12 hours before blood draw & no biotin containing supplements for 3-7 days (Biotin can interfere with thyroid blood results as it is used in the testing process)? Testing like this gives consistency in your results and will show stable blood levels of hormone and highest TSH which varies throughout the day. Taking Levo/T3 just prior to blood draw can show a falsly elevated result and your GP/Endo might change your dose incorrectly as a result.

It's ideal if you can always get the same brand of levo at every prescription. You can do this by getting GP to write the brand you prefer in the first line of the prescription. Many people find that different brands are not interchangeable.

Always take Levo on an empty stomach an hour away from food or caffeine containing drinks & other meds. Many people find taking it at bedtime works well for them.

When hypo we get low stomach acid which means we cannot absorb vitamins well from our food, regardless of a great diet. For thyroid hormone to work well we need OPTIMAL levels of vitamins. Have you recently or could you ask your GP to test levels of ferritin, folate, B12 & D3? Private tests are available, see link for companies offering private blood tests & discount codes, some offer a blood draw service at an extra cost. thyroiduk.org/help-and-supp...

[pennyannie]

Hello Future Teff and welcome to the forum:

Looking at you bio you write that you have Hashimoto's Auto Immune thyroid disease so are liable to erratic own thyroid hormone production which can cause ' swings ' in hyper/ hypo type symptoms as when this swings swings back your thyroid is left further damaged and with you likely needing more sup any increase on your thyroid hormone replacement- T4- Levothyroxine.

It is essential that you are dosed and monitored on your Free T3 and Free T4 readings as a TSH reading, seen in isolation is very limited and generally misinterpreted once on any form of thyroid hormone replacement.

You may like to read around Hashimoto's and healing the gut and looking at food intolerances a necessary step to try and optimise well this AI disease and the ability of the thyroid hormone replacement to be absorbed well in the gut and convert to T3 - the active hormone that runs the body.

No thyroid hormone replacement works well until your core strength vitamins and minerals . those of ferritin, folate, B12 and vitamin D are up and maintained at optimal levels.

thyroidpharmacist.com

[tattybogle]

Just be aware that any dose reduction . whether it is correct or not , may well leave you feeling a bit undermedicated for the first few weeks until the body adjusts to the lower dose. So you really need to give it a few more weeks to settle in , and then get bloods tested at 6 weeks , to see what is going on.

I've had my dose reduced a few times.. both when it WAS needed (because i was genuinely over replaced , with symptoms to match ...... and also when it WASN'T needed, (i felt fine , but bloods showed High T4 and low TSH, so GP insisted on reduction )

Both times ,for the first few weeks i did feel undermedicated , with some hypo symptoms re-appearing in the first week or so .. (eg constipation/ tiredness /cold ).

When i did need the reduction, these hypo symptoms improved over a few weeks and by about week 5 i felt ok on the lower dose ., and i continued to improve over the next couple of months .

When i didn't need the reduction /or the reduction was too big, the hypo symptoms continued to worsen after 5 weeks .,and the dose had to be put back up a bit.

When we see your results that led to to this reduction we can help you figure out why it was reduced and give you an idea whether it really needed to be reduced or not.

Some GP's are too heavy handed , making large dose reductions when often a very small reduction was all that was needed ... how much was your dose reduced by ?

[FutureTeff in reply to tattybogle]

Hi Tattyb, thank you for your reply. I’d been on 100mg of Levothyroxine for two months, having previously been on 50mg for 4 months, without seeing any improvement to my symptoms. I had finally started to see a drop in my weight which had stubbornly remained the same for two years, no matter what I did. Water retention is one of my biggest symptoms.

My endocrinologist has now reduced my dose to 75mg and in a week I have put on 7lbs and can’t get my ring off again. I feel heavy and unbelievably tired. (I also have sarcoidosis which adds to the fatigue). My tsh is 0.04 and my T4 is 22.6.

I have Hashimoto’s and do everything I can through diet to eat to reduce inflammation.

Any advice you can give would be so grateful, feel like I’m going backwards.

[tattybogle in reply to FutureTeff]

personally with those results , i'd ask for a compromise ... try 87.5mcg for 6 weeks ,rather than 75mcg .

12.5mcg adjustments are better than 25mcg's when you are somewhere near the right dose

You can get 87.5mcg/day by taking 75mcg / 100mcg on alternate days ,, its quite common for GP's to prescribe like this ..(a few of us notice the difference between higher/ lower days , but we cut a 25mcg in half and then take the same dose each day )

TSH is below range, is it 0.04 or 0.02 ?

That is why they have reduced your dose .... they are concerned about risks for osteoporosis and atrial fibrillation increasing with supressed TSH ,.. BUT there is good evidence that TSH 0.04 or over (in patients on levo ) had no higher risk than having TSH in range .

Evidence is in this post here, very useful for 'low TSH' arguments with doctors. .. healthunlocked.com/thyroidu... useful-evidence-that-tsh-between-0.04-0.4-has-no-increased-risk-to-patients-on-levothyroxine-updated-new-study-does-show-small-risk

Also this one: healthunlocked.com/thyroidu.... tsh-is-just-the-opinion-of-your-pituitary-about-your-dose-but-your-pituitarys-opinion-is-a-bit-warped-once-you-take-thyroid-hormone.

However the fT4 result does also look to be high / over range .

Do you have the lab range used for that fT4 test ?

(it should be after result in brackets .. might be [12-22] or [7-14] or something else)

There are also some possible risks of having higher fT4 levels (details in the post i linked to above )

So ideally if you can fine tune dose to keep TSH over 0.04 and fT4 within range , and still feel ok , that is better than having T4 over range and TSH totally supressed.... but not everyone can manage this. some need TSH to be lower before they feel well , and some may do better with a bot less T4 and the addition of a bit of T3.

How many hours before the test did you take the last dose of Levo ?

What time of day did you take the blood test ?

[jgelliss in reply to tattybogle]

I'm very happy that you mentioned this experience . I too experience symptoms raising or lowering my thyroid dose even if only by 12.5 mcg T4 . I too realized that it takes my body time to acclimate to the new dose changes . I learned with my TT journey that patience is a virtue when it comes to thyroid meds. Slow and Steady wins the race. Thank you for sharing your experiences. I'm not alone.

[FutureTeff]

thank you for the links, they make really interesting and helpful reading. Yes sorry 0.04.

The tests were done without following the protocol and were done in the afternoon 11 hours after taking my levo and not after fasting.

Following advice from everyone on here, I’ve booked a private blood test for first thing on Monday morning and will follow the advised protocol and see what the true picture is.

Thank you for all your help, it’s so reassuring to have advice from someone who has been through it and knows their stuff.

All the best

[tattybogle in reply to FutureTeff]

You're welcome