Why have my hypo symptoms returned despite TSH dropping below range?

[Shenks]

Hi,

This is a follow up post because I have now taken a blood test with MonitorMyHealth.org to get TSH,T4,T3 and Vit D to add to my existing results.

Diagnosed with Hashimotos Hypothyroidism in June last year.

Original results:

TSH >100 (0.27-.42)

T4 1.3 (12-22)

Anti-thyroid peroxidase 98 (<34)

I gradually worked up from 50mcg of Levothyroxine to my current dose of 150mcg

By March this year my symptoms had gone away and I felt fine.

But in the last couple of months, some hypo symptoms have returned (very tired and cold).

I presumed that my TSH had gone up again, but the opposite has happened TSH is now below range.

Here are the latest results (Bloods taken early in the morning, pre-breakfast, 24 hrs since last levo and no supplements for a week)

TSH 0.03 mu/L (0.27 - 4.2) Abnormal (it was 0.04 last week)

T4 24.3 (12-22) Abnormal (it was 22.2 last week)

FT3 5.2 pmol/L

( 3.1 - 6.8 )

Vitamin D 99 nmol/L (MonitorMyHealth don’t show a range for this, but from graph it looks like 23-103. Above 103 is “Excess”)

Serum ferritin 264 (33 - 490)

Serum folate 16.0 (2.5 - 19.5)

Serum vitamin B12 484 (180 - 900)

I also had a Full Blood Count - all normal apart from these two:

Red blood cell (RBC) count 4.42 (4.50 - 6.00) last two results were normal but previous 8 results were also under range .

Neutrophil count 1.21 (1.5 - 8.0) First time this is abnormal.

Why have Hypo symptoms have come back?

I’m worried that the doctor will reduce my Levo dose and my symptoms will get even worse.

BTW I’m Male, late forties, normal weight BMI 22.8 & resting heart rate 50bpm

.

[Lalatoot]

You need to test Ft3 as well. You are only looking at part of the picture if it is not tested. You need to l check how efficiently your body is converting t4 to t3.

[Shenks in reply to Lalatoot]

FT3 5.2 pmol/L

( 3.1 - 6.8 )

[jrbarnes]

I agree about the T3 levels. My GP said my T4 and TSH levels were fine but it was the T3 levels that were not okay. If you felt fine in March then can you not go back to that dose? High T4 and sub optimal T3 will result in hypo symptoms, at least it did in my case. I'm not a professional but I've read a few articles online that state higher amounts of Levothyroxine can slow down conversion of T4 to T3. It's something to think about.

[Shenks in reply to jrbarnes]

FT3 5.2 pmol/L

( 3.1 - 6.8 )

[jrbarnes in reply to Shenks]

It looks like your GP is filling you with loads of T4 but it's not making you feel better. What matters most is where your FT4 and FT3 fall and if you feel normal. I wouldn't feel good unless my FT3 was at the top of the range but every person has different needs. I also wouldn't feel good if my FT4 and FT3 were simultaneously and significantly higher than the reference range. I'd feel alright if my FT4 was at the very top of the range and slightly over only if my FT3 was also at the top of the range. You have to find out what works for you. It's a real balance between T4 and T3 levels. There are more therapies than Levothyroxine only, although it's the most convenient. Life would be easy if only you could get the amounts of T3 you need from a reasonable dose but it's not like that for everyone and will save you a lot of time if you figure it out from the start. I finally went to a private practitioner to get help, which I understand is not always possible. Most Doctors practicing inside of any system are reading from a script, although there are some small exceptions. When it comes to Levothyroxine(T4) many brands have different percentages of the acitve ingredient Levothyroxine, which can affect how you feel right off the start. One brand I could barely get out of bed. If you don't feel well on one then try another and use it as your base to build upon and don't change brands once you get stable on it. The tiniest change in potency can affect levels and have debilitating symptoms. Same time every day and don't ever skip a dose. My boyfriend has hypo and often skips a dose and complains that he's tired! We're also in our 40s. I'm in the US and it's easier to get T3 here but it may be what you need if you are still not feeling well. Dropping down a dose in T4 and adding some T3, but I understand in the UK that is very difficult. The best approach you can take is to educate yourself and know what you're talking about so you can persuade the GP. It's like a skill you develop as a thyroid patient, ha. good wishes and good luck!

[Shenks]

Sorry, I forgot to put my T3 result. That was the whole point of this repost.

(I'll add brain fog to my returning symptoms)

FT3 5.2 pmol/L ( 3.1 - 6.8 )

I've just figured out how to edit my original post, so I've put my T3 results there too.

[Cooper27]

I've been a bit like this too - I was nervous about running my thyroid panels in case it brought bad news!

I think we have to start considering whether other things are behind it. My vitamin D levels had dropped a bit below optimal again, my folate had room for improvement too. I dialed back on processed foods again too.

One thing that is important is to try to spend some time outdoors each day too - our bodies need the natural light to regulate their circadian rhythm. A blast in the morning and a blast in the afternoon may help

[Purpledreamer in reply to Cooper27]

Completely agree, sometimes I realise I’m spending so much time cooped up indoors. But when I’m forced to go out I feel so much better to be outside.

[tattybogle]

As Ft4 is rising and TSH is falling i would suggest trying a small reduction of 12.5 mcg. I know you've been on lower dose before , but fine adjustments are needed to get things just right.

It would be better to have an FT3 to go with these results and then you could be clearer what was going on , but FT4 and TSH would suggest dose is a bit too high.

You're right , GP will probably want to reduce dose due to over range FT4 ,and low TSH, and you've got zero chance of an increase on these results.

You may be able to stay on 150 and get a re test in 6 mths if you are persuasive. But don't rule out the idea that it is possible that a small reduction may feel better than you do now.

Having said that, i'm currently on very over range Ft4 and TSH 0.05 , because i agreed to reduce dose slightly and it left me constipated, so GP has extremely reluctantly put it back up.

But it's early days for you still and you were VERY hypo to start with, body has a lot of rebalancing to do when you first replace hormones, so it's just possible you really don't need 150 anymore.

[Shenks in reply to tattybogle]

I already posted my FT3. can you not see it?

[tattybogle in reply to Shenks]

Oops My mind wandered off ,so it took me an hour to finish writing that . Crossed with your Ft3 in cyberspace

OK , so , FT3 only a bit over 50% through range, in which case if GP want's to reduce and you don't, you can use this to argue that you're not actually overmedicated .

[SilverAvocado]

Hi Shenks, these results look like a textbook case of someone who needs T3 in addition to the T4 in Levothyroxine.

Your freeT4 is over the top of the range. This is the storage form of thyroid hormone and is what Levothyroxine contains, so this gives a good measure of how the tablets are raising your levels.

But then when we turn to your freeT3 it is only halfway through the range, which is too low for most people. When taking a T4-only hormone replacement your body has to convert that storage hormone into the active form of T3. Doctors will assume this happens automatically, but for some of us, particularly when we're ill, our bodies aren't always great at doing that. That is the case here.

T3 is the active hormone needed by every cell and organ in your body. The reason you're still having symptoms is because it's on the low side. Most people will need it in the top third of the range to feel well.

Now how to get access to T3 treatment is the more difficult question, as doctors are notoriously stingy and put under enormous pressure not to prescribe it

[SlowDragon Administrator]

Was this test done as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test?

What vitamin supplements are you currently taking?

If taking any supplements that contain biotin it’s important to stop supplementing a week before ALL BLOOD TESTS

As you have Hashimoto’s are you on strictly gluten free diet?

[Shenks in reply to SlowDragon]

1. Yes, as per post

2. Daily a-z Multi Vitamins although I have added Vit B complex since my blood test, on the advice from my post last week. due to B12 not being optimum.

3. Yes, as per post

4. I eat gluten. what is the connection between Hashimoto's and Gluten?

[SlowDragon Administrator in reply to Shenks]

Multivitamins are not recommended with Hashimoto’s

Most contain iodine, best avoided with Hashimoto’s

You are getting plenty of iodine in levothyroxine

Better to only supplement what’s required

Posts re Multivitamins

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

[SlowDragon Administrator in reply to Shenks]

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

Low vitamin levels affect Thyroid hormone working

Poor gut function with Hashimoto’s 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

While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first

healthcheckshop.co.uk/store...?

Assuming test is negative you can immediately go on strictly gluten free diet

(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)

Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse

chriskresser.com/the-gluten...

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

thyroidpharmacist.com/artic...

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

restartmed.com/hashimotos-g...

Non Coeliac Gluten sensitivity (NCGS) and autoimmune disease

ncbi.nlm.nih.gov/pubmed/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

ncbi.nlm.nih.gov/pubmed/300...

The obtained results suggest that the gluten-free diet may bring clinical benefits to women with autoimmune thyroid disease

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.

You don’t need to have any obvious gut issues, it’s ALWAYS worth trying strictly gluten free diet.....you might be astonished

[SlowDragon Administrator in reply to Shenks]

Do you always get same brand of levothyroxine?

You might consider reducing dose very very slightly, down to 125mcg once or twice a week

Only make one change at a time

[Shenks in reply to SlowDragon]

Thanks for the posts SlowDragon.

I read the two posts about multi vitamins. Point taken

There was lots of advice about what not to take, but not specific advice about what to take?

as a recap:

Vitamin D 99 nmol/L ( 23-103 approx)

Serum ferritin 264 (33 - 490)

Serum folate 16.0 (2.5 - 19.5)

Serum vitamin B12 484 (180 - 900)

I've just bought

Vit B complex with 450 ug methylcobalamin

and vit D100ug

HLAB35 suggested I take

methylfolate - What dosage?

p5p which looks like adiferent form of Vit B6 than the one in my Vit Bcomplex

Is there anything else I should take if I'm dropping the multi vits?

What can be taken together vs spaced out?

[janeroar in reply to Shenks]

Magnesium and selenium. Definitely worth adding in.

[SlowDragon Administrator in reply to Shenks]

No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap.

Some like magnesium or vitamin D should be four hours away

(Time gap doesn't apply to Vitamin D mouth spray)

Vitamin D mouth spray is good as avoids poor gut function too. There’s one available that includes vitamin K2

Magnesium must be four hours away from levothyroxine. Best taken afternoon or evening (time depends if you take levothyroxine at bedtime)

Calm vitality magnesium powder is cheap and easy to use. Good for constipation. Best to start on low dose as too much can cause diarrhoea

good quality daily vitamin B complex, one with folate in (not folic acid) may be beneficial.

This can help keep all B vitamins in balance and will help improve B12 levels too

Difference between folate and folic acid

chriskresser.com/folate-vs-...

Many Hashimoto’s patients have MTHFR gene variation and can have trouble processing folic acid.

thyroidpharmacist.com/artic...

B vitamins best taken after breakfast

Igennus Super B is good quality and cheap vitamin B complex. Contains folate. Full dose is two tablets per day. Many/most people may only need one tablet per day. Certainly only start on one per day (or even half tablet per day for first couple of weeks)

Or Thorne Basic B or jarrow B-right are other options that contain folate, but both are large capsules

If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before any blood tests, as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

Low B12 symptoms

b12deficiency.info/signs-an...

Might need separate B12 supplement as well as a B Complex (to balance all the B vitamins) initially for first 2-4 months, then once your serum B12 is over 500 (or Active B12 level has reached 70), stop the B12 and just carry on with the B Complex.

B12 sublingual lozenges

amazon.co.uk/Jarrow-Methylc...

cytoplan.co.uk/vitamins/vit...

Selenium supplement once or twice week might be good idea

[McPammy]

Your T4 is too high causing your TSH to be suppressed. You need to lower your T4 Levothyroxine and bring it down. Then your TSH will stop being suppressed hopefully.

Reduce by a small amount to begin with. Taper it down. Or alternate days you reduce to begin with. Your T3 looks good so you seem to be converting well T4 to T3.

[FancyPants54 in reply to McPammy]

His T4 is 123% through the range. His T3 is only 56.76% through the range. That's a big gap between the two results and T3 is pretty low there.

[Shenks]

So why my Hypo symptoms are returning?

[Clairewalker751 in reply to Shenks]

You're not highly overeducated as per your T3 however for me hypo symptoms are very similar to being slightly overmedicated, I your shoes I would drop my dose slightly and see how that feels, remember a healthy thyroid would deliver what we needed on demand just banging in the same amount everyday may mean some days were a bit low and some days a bit high? Finding your sweet spot can be a challenge and you may find it for a couple of years and things may change again?

[tattybogle in reply to Shenks]

When i got to the point you are now , after a year and a half on increasing dose of levo (up to 150 with some periods of feeling better but they didn't last, then increase and feel better for a few months etc )

I then increased to 175 ish and got FT4 over-range and TSH 0.001, but i didn't feel any better with that increase and gp freaked at numbers and reduced dose to 150. From that point on i believed them that my fluctuating energy had nothing to do with thyroid dose, and got sent off to see the CFS/ME folk, thinking i must have developed that in addition to my hypothyroidism.

With hindsight i would have done better to not believe them and try and get my FT3 level higher than the 50% it was at on >100% levo. Some folk would say surely that's good enough for FT3, but i now know that healthy people have very individual ratio's for FT4 /FT3 and probably half have FT3 equal to or even higher than FT4. So perhaps those who get to 100% Ft4 with 50 %Ft3 on Levo are still not at the right ratio for them.

I'm on the (long)road to get some T3 out of NHS now and see if adding a bit to a lower dose of Levo improves how i function. Quite likely you might need to try the same , and if you can afford to do it without waiting for the NHS to agree to try some, i'd say think about doing it yourself, and monitor your own bloods. There is enough knowledge, experience and sensible advice on this site to be safe going it alone if you choose to .

[HLAB35]

Slow Dragon is spot on re: gluten and multivits. Gut issues get in the way of b12, iron, zinc, magnesium and selenium absorption (all needed for conversion). It's worthwhile investing in a B Complex with methylcobalamin, methylfolate and p5p.

[HashiFedUp]

Your symptoms are probably a result of having too much t4 so don’t worry if you reduce your T4. I would recommend lowering your t4 but only by a little bit at a time and then retest.

Aim for t4 and t3 being 75% up through the ranges and tsh under 1.0 or even between 0.2 - 0.6.

If your vitamin D has improved it will speed up your metabolism which will improve your bodies ability to absorb your Levothyroxine hence why your body now has too much.