Low FT4, Normal TSH, Fluctuating FT3

[Amy_O]

Hi everyone,

Would massively appreciate some advice as my GP & Endocrinologist are not giving me answers to why my Thyroid has been underactive. All they have done is say I should take Levothyroxine 25mg. Before I do I want to try create a holistic treatment plan alongside the medication & to do that I want to get to the root cause.

Firstly a quick background, I'm a 30 year old paramedic who has suffered with a slipped disc (2016), IBS (2018) & a couple episodes of sinusitis in which one of them was query viral meningitis (2020), but otherwise fit & well!

For the past year I have started to have debilitating fatigue being unable to work, suffering migraines, rapid weight gain of 5 stone, menorrhagia & only had 4 periods in 15 months. This has led to lots of blood investigations & scans.

TSH has fluctuated from 1.04 - 5.8 (REF 0.35-5.5)

FT4 has fluctuated from 7.4 - 8.9 (REF 7.8-14.4)

FT3 has been 1.3 & 5.0 (REF 3.8-7.0)

All Thyroid Antibodies Negative.

Prolactin initially elevated at 563 but now 455 (REF 82-524) - informed would be very high if a Prolactinoma?

MRI head scan clear.

Sex hormones within normal range but Progesterone low (not ovulating, periods averaging 3-4 months) - pelvic ultrasound clear.

No vitamin or mineral deficiencies.

Liver ALT 88 (REF 8-45)& AST 73 (REF 10-32), Fatty on ultrasound since weight gain.

ESR 44 (REF 1-20) & CRP 7 (REF 1-10), GP assumed inflammation due to disc herniation.

I have a clean diet, log my calorie consumption at 1500kcal & take supplements like multivitamin, omega 3, vit D yet still have piled on the pounds.

Non smoker. No alcohol. Inactive lifestyle now due to the weight gain & fatigue.

What do we think is going on then? I have been researching like crazy & have some theories but want to hear from anyone who has been in similar situation or is well educated on the matter.

Many Thanks in advance!

Amy

[SlowDragon Administrator]

Have you had BOTH Thyroid Peroxidase antibodies and Thyroglobulin antibodies tested

NHS normally only tests TG antibodies if TPO are high

Significant minority of Hashimoto’s patients only have high TG antibodies

20% of autoimmune thyroid disease patients never have high thyroid antibodies

An ultrasound scan of thyroid can be helpful

IBS extremely common hypothyroid symptom, especially autoimmune thyroid disease …..low stomach acid, bloating, acid reflux etc

Have you had coeliac blood test done

If not GP should test

Multivitamins are never recommended on here …..most are at best waste of money…..but also most contain iodine not recommended for anyone with thyroid issues unless tested and found deficient…..even then iodine can exacerbate situation

Suggest you stop taking multivitamin and retest in 6-8 weeks

ALWAYS test thyroid levels early morning around 9am

High prolactin linked to being hypothyroid

[Amy_O in reply to SlowDragon]

I've had a lot of my tests done privately & I am currently under a private Endocrinologist. I've had TPO, TSI & Anti-TG tested & all negative.

Anti-Tissue Transglutaminase Antibody was negative for coeliac disease. I also had a faecal calprotectin test which was normal for investigating IBD so put abdo pain, loose stools & excessive wind down as a Irritable Colon.

I only started to take a multi-vitamin last week as was recommended to by a nutritionist but she isn't trained specifically for thyroid conditions. I take vitamin D regularly.

Every thyroid test has been taken at 8am on a empty stomach.

The private Endocrinologist said he wants to start me on Levothyroxine 25mcg. I am waiting for his letter of recommended treatment to then approach my GP for a prescription. I have not yet been given the medication. He did state 25mcg not 50mcg.

I've had full iron panel checked including ferritin & foliate.

I've also had a dexamethasone test for cortisol to rule out Cushing's Disease.

Bone profile, electrolytes, full blood count, vit D, vit b12, copper & caeruloplasmin, immunoglobulin, lipids, hbA1c & fibrosis 4 index all well within range.

My main question is what is causing my T4 to be low. TSH isn't responding well to the T4 dropping so I assume it's a pituitary issue? I had a head MRI & told it was clear but I'm chasing details of what exactly is clear. They scanned me due to the migraines so I'm wondering if they examined the pituitary in detail?

I have seen research on how some patients may have Hashimoto's but not have serum antibodies detected. A scan of the thyroid would give a better picture to see if there is any damage of antibodies present on the thyroid. Could this be a possibility? I have autoimmune conditions within my family of type 1 diabetes, rheumatoid arthritis & my grandad had a underactive thyroid but I don't know the root cause.

Also I have a history of viral infections could this have been the trigger for T4 to drop?

Thank you for responding, massively appreciate it!

Amy

[SlowDragon Administrator in reply to Amy_O]

There’s two thyroid antibodies implicated in autoimmune thyroid disease

Thyroid peroxidase antibodies

Thyroglobulin antibodies

You would need to test privately via Medichecks or Blue horizon

20% of Hashimoto’s patients never have high thyroid antibodies

Private ultrasound scan is approx £100

Many many Hashimoto’s patients have sluggish TSH, that doesn’t respond to low Ft4/Ft3

Only 5% of Hashimoto’s patients test positive for coeliac, but approx further 80% find strictly gluten free diet helps, often significantly or is essential

Similarly approx 60-70% find dairy free is beneficial

So it’s always worth trying……initially gluten is easier to cut out

What were your most recent vitamin results and ranges

vitamin D

Folate

Ferritin

B12

[Amy_O in reply to SlowDragon]

I have a medichecks venous sample being taken for all these blood tests on 20th so will update my results to you then & would appreciate your input. It includes a full thyroid with antibodies so I assume it will include both that you have mentioned. Thank you so much for your advice.

Amy

[SlowDragon Administrator in reply to Amy_O]

yes it will include both antibodies

[SlowDragon Administrator in reply to Amy_O]

When hypothyroid we frequently have low stomach acid, this results in poor nutrient absorption and low vitamin levels

Low stomach acid makes gut infections more likely

hypothyroidmom.com/hashimot...

Have you been tested for H pylori, SIBO, gastris, EBV, etc

[Amy_O in reply to SlowDragon]

For not think I've had these tested. It's a fight getting my GP to do any tests. Where can I get these tests done?

[Amy_O in reply to Amy_O]

Sorry that first sentence doesn't make sense... brain fog & a migraine kicking in!

[SlowDragon Administrator in reply to Amy_O]

See what Medichecks tests show first

Test 6-8 weeks after each dose increase

Only do private testing early Monday or Tuesday morning, just before 9am and last dose levothyroxine 24 hours before test

Work on improving low vitamin levels

And get levothyroxine dose increased slowly upwards over next 6-12 months

Guidelines on eventual dose levothyroxine required is approx 1.6mcg per kilo per day

[SlowDragon Administrator]

Standard starter dose levothyroxine is 50mcg unless over 60 years old

Which brand of levothyroxine are you currently taking

Starting on too low a dose can make symptoms worse…..so don’t be surprised

Taking levothyroxine everyday without fail, always on empty stomach and then get full thyroid and vitamin testing done 6-8 weeks after each dose change or brand change in levothyroxine

Dose levothyroxine is increased slowly upwards in 25mcg steps, retesting 6-8 weeks after each increase. Typically takes 6-12 months to get up to high enough dose and stable with optimal vitamin levels essential

Frequently necessary to supplement vitamin D and a separate vitamin B complex.

Some people will initially need separate B12 too.

Possibly iron. Never supplement iron without getting full iron panel test for anaemia including ferritin first - another reason to avoid multivitamins

[SlowDragon Administrator]

pathlabs.rlbuht.nhs.uk/tft_...

Guiding Treatment with Thyroxine: 

In the majority of patients 50-100 μg thyroxine can be used as the starting dose. Alterations in dose are achieved by using 25-50 μg increments and adequacy of the new dose can be confirmed by repeat measurement of TSH after 2-3 months. 

The majority of patients will be clinically euthyroid with a ‘normal’ TSH and having thyroxine replacement in the range 75-150 μg/day (1.6ug/Kg on average).

The recommended approach is to titrate thyroxine therapy against the TSH concentration whilst assessing clinical well-being. The target is a serum TSH within the reference range. 

……The primary target of thyroxine replacement therapy is to make the patient feel well and to achieve a serum TSH that is within the reference range. The corresponding FT4 will be within or slightly above its reference range.

The minimum period to achieve stable concentrations after a change in dose of thyroxine is two months and thyroid function tests should not normally be requested before this period has elapsed.

[Happytiredbunny]

Ashwaganda is a great natural supplement that can balance quite a lot of main body functions, thyroid included, have you had cortisol tested under the endo? I’m guessing as a paramedic you’ve been under tremendous stress over the last few years, having high cortisol levels for so long moves your systems further from homeostasis… I’ve recently qualified as a reflexologist and I’ve been amazed at what I can see and feel out of balance through feet, it’s great for resetting the stress response if you’re looking for complementary options to support you.

[Amy_O]

I've had 24 hour urine cortisol test that came back normal, more at lower end of reference range, had a cortisol blood test that was well within the reference range & a dexamethasome cortisol test which again was normal. This was done by two separate private endocrinologist as I wanted a second opinion so I think it is confident to say cortisol is unlikely cause. You are right about the stress though! I've been so unwell with this I've come off the ambulance & been redeployed within the service to a desk job at 111. Miss being out on the road...but don't miss standing in a hospital corridor for 10 hours! I've had reflexology a few times. Thanks for your advice! Might give it a go again 👍

[FAB-jellybean in reply to Amy_O]

Just a word of warning about Ashwagandha for people with potential autoimmune disorders, I tried it and it made me very poorly after about 6 weeks. See my post on someone else's thread below.

healthunlocked.com/thyroidu...

You might also find this thread about Ashwagandha useful:

healthunlocked.com/thyroidu...

I am also having issues with high prolactin 858-1370 mIU/L Range 102 - 496 and I can't make my mind up if the high prolactin is keeping my fT4 levels low or if it's the low fT4 levels that are keeping the prolactin high. Looking back at my hospital medical record results over the last 9 years (I'm still waiting on my GP medical records to get a better picture from my diagnosis in 2003), my levels have never been very stable, but it's probably a lot to do with the fact that I had no idea that biotin should be stopped 3-7 days prior to testing and that testing should be done around 9am with the last dose of levothyroxine 24 hours before (patient to patient tip that doctors aren't aware of and would probably scoff at).

You're unlikely to feel any better until your Ft4 and fT3 are at optimal levels for you. Your TSH levels are much less important when you are medicated with thyroid hormones. Dr Isabella Wentz (thyroidpharmacist.com/) and Dr Sarah Myhill (drmyhill.co.uk/wiki/My_Book... have both got great advice on holistically improving your health and thyroid function. Bear in mind that there is often a lag of 5-6 weeks or longer between a thyroid hormone dose change and you feeling the full and true effects of it. For example, you may feel a bit better for a week or 2 following a dose increase and then suffer a relapse because the dose isn't sufficient for you. Best of luck Amy.

[Hedgeree]

Hi Amy_O,

Very sorry....I deleted my reply as it was intended for someone else and possibly not relevant to you! Apologies!

Best wishes.

[Lovecake]

Hi, I don’t know if this helps, but I get bad migraines when my FT4 is too low (for me). I’ve worked it out over the years. Had several years of TSH being at top of range - 5 - and not told. So only put on levo when TSH was 9.9 and FT4 under range. Makes a huge difference with the migraines, fewer and more manageable.

Might be worth giving the levo a try to see if it helps calm your migraines down too because your body feels better.

You are a paramedic, you do an amazing job whether at a desk or not. So give yourself time to heal ☺️🧁

[Amy_O in reply to Lovecake]

Thank you so much for that advice. It's good hearing you have identified a cause of the migraines & the Levothyroxine has helped. Gives me some hope to give it a go. I'm currently taking 20mg Amitriptyline for migraine prevention which has reduced frequency from every day to a couple a week. The excessive sleeping from fatigue triggers them so hopefully Levothyroxine helps! Thank you your message is so kind & encouraging 💚

[Lovecake in reply to Amy_O]

obviously I’m only saying what happened to me and we are all different.

I was put on amytriptaline (when my thyroid was struggling but they ignored). It was ok for a bit, but after a while they wanted to up the dose. Then I put on half a stone in 6 months. As dieting causes migraines for me I wasn’t happy.

I have Imigran for when I think a migraine is brewing. I have other triggers like certain smells/perfumes, being over hungry, stressed, too cold………but the ones when my thyroid levels drop low are the worst. It still happens, but not like it was before.

I’m actually on levo plus T3 now. But I’m sure you’ll notice a difference once you are on some levo. Do lots of reading. Ask questions on here, fab bunch of people who can help. I also jot things down which helps me to remember. After a while it all sinks in ☺️