Still having symptoms of hypothyroidism despite medication - any advice?

[melissa-b]

I wondered if anyone could please share their thoughts on my situation. I was diagnosed with subclinical hypothyroidism around 8 years ago, but didn’t have any symptoms (apart from some fatigue).

Then, after contracting COVID in 2020, I began to have symptoms like 30-35lb weight gain (unexplained), thinning brows, thinning hair, no libido, and extreme fatigue. I have been diagnosed with POTS and long COVID since (and MCAS, hEDS)

I tried 25mcg levothyroxine in April 2020, got COVID again lol, then started taking 50mcg in August 2022.

Although my TSH is now in range, I still have all the same symptoms (weight gain - mainly around the stomach and under my chin, thinning brows and hair, fatigue, etc). Should I ask my GP if I can take 75mcg or something, to see if it helps?

I tested negative for all antibodies. I was low in ferritin, vitamin D, and B12, but I’ve treated all of these and they’re optimal now (or almost optimal), thanks to everyone's advice last time.

I’m also on the mini pill Cerelle but I’m too scared to come off of it right now (periods will make my POTS symptoms hell if I do!)

At one point, both my T4 and TSH were high (out of range) at the same time, but they said they couldn’t do any other investigations (or test T3 etc). All of my T4 and TSH results are in my profile, but I can copy them into the comments if that helps.

The latest results are:

11 Sep 2023 Serum free T4 level 14.4 pmol/L [7.9 - 14.4] Normal

22 Nov 2023 Serum TSH level 3.73 mIU/L [0.38 - 5.33] Normal

Here are photos of my eyebrows, the amount of hair I'm losing, and my weight gain - imgur.com/a/xFMGN5E

Thank you, any advice or similar stories are appreciated!

[GlowCoach Administrator]

With a TSH of over 3 plus only on 50mcgs Levo then no wonder you still have symptoms.

Your GP may be looking at your FT4 which appears to be top of range.

How are you taking the blood test? Recommended protocol:

Test at 9am (or as close as possible), fasting, last levo dose 24hrs before the 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 falsely elevated result and your GP/Endo might change your dose incorrectly as a result.

Taking Levo just before the blood test will show a false high level due to what you have just taken.

How are you taking your Levo?

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.

You clearly need an immediate increase of 25mcgs. 50mcgs is just a starting dose. The idea is to take for 6-8 weks, retest and increase the dose until TSH is at or just below 1.

We do need to be a little pushy sometimes regarding getting our levels more optimal. GPs are often content to leave us just within the middle of the range and its down to us to persuade them otherwise.

Well done on getting vitamins more optimal. Keep that up.

[melissa-b in reply to GlowCoach]

Thank you so much - you're right, the GP said I couldn't go higher because my T4 was too high!

I usually do the tests in the morning (as I was advised this before), but last year I had a very bad seizure (vasovagel seizure and faint) from trying to have a test done in the morning whilst fasting, and it was very, very traumatic... I was unwell vomiting for days after the test, as well, unable to eat or leave my bed. So the November test was in the afternoon (I took the levo after the blood test is done), the previous ones were ones that I requested to have early morning and fasted. I would be unable to fast anymore after having the seizures, but I probably could have an early morning test again (so long as I eat and drink!)!

I take my levothyroxine in the morning on an empty stomach, and set an alarm for 30 mins, shower, and then eat and drink... Maybe it's not long enough? Due to my POTS I find it hard to not eat for long periods of time, and I take a lot of my other vitamins/minerals in the evening to help me sleep (high dose magnesium - I don't take anything with biotin in).

I'll ask the GP to retest my T4 and TSH (early morning one)... They might not let me raise my dose as they did say my T4 was too high, which is frustrating, but I'll see what the next results are! Thank you so much for your help. It's a nightmare to get to the bottom of!

[GlowCoach Administrator in reply to melissa-b]

If you're not taking Levo just before the test then the other reason your FT4 is high compared to TSH is the way you take your Levo.

Someone here recently had issues with drinking peppermint tea not long after taking their Levo. Levo just doesn't like it and won't work well unless you leave a full clear hour after taking it, drinking just water. Taking Levo at Bedtime works well for many.

Really you need to leave an hour after taking Levo before anything other than water.

If you have hEDS/POTS/MCAS I would recommend a good quality omega 3 supplement but that can take a long time to make a difference.

[melissa-b in reply to GlowCoach]

It's tricky! Are you also meant to take levo on a completely empty stomach, if you take it at night? I always eat something small at night as well otherwise I get migraines in the morning (no clue why, guessing it's to do with blood sugar). I'll try leaving it for a full hour in the morning and hope it helps, and hope my POTS doesn't get worse as it's quite untreated at the moment! Is it okay to take Cerelle one hour after taking levothyroxine?

I've been taking Together Natural Algae DHA Omega for 3-4 months but not seeing a big improvement, so if you know of any veggie ones I'd be interested in knowing what they are! Thank you

[GlowCoach Administrator in reply to melissa-b]

It will probably take 6 months to begin to show a difference with omega 3.

You also need to be taking a high enough dose and what you have is on the low side.

Bare in mind you likely need 2g omega 3 a day with a good amount of EPA and DHA.

This one looks better. vegetology.com/supplements/...

You might get fewer migraines of you take Levo at night, worth a try. It should be on an empty stomach so have your snack a little earlier?

Can you take the Cerelle a little later in the day? Evening even? Its just its another hormone and probably best to keep it well apart from Levo.

[HealthStarDust in reply to GlowCoach]

Do you really think a increase is required given that T4 is already at the very top of the range?

[GlowCoach Administrator in reply to HealthStarDust]

I think there might be a reason other than being optimally replaced on Levo that has caused the FT4 to be top of range on 50mcgs Levo.

melissa-b can I ask your approximate weight in kilos? Your imgur doesn't seem to be working.

[HealthStarDust in reply to GlowCoach]

I do too and I responded to Melissa below regarding this.

[melissa-b in reply to GlowCoach]

Yes sorry - I've posted photos now under the comment with my Imgur link. I'm 5'7 and 67kg now. Thank you for the link to the tablets as well, they're similar to the ones I'm taking but I only take one (whereas their serving is two per day), and it works out a bit cheaper which is great! I could try taking levo and Cerelle opposite ends of the day. I'm also taking my high dose antihistamines at night (i have mast cell activation syndrome), as well as the omega, magnesium, ferritin/iron, vitamin D, K2, hopefully it'll be okay. I'd feel a bit gutted if it's really down to patient error (all of my symptoms).

[GlowCoach Administrator in reply to melissa-b]

So by weight (which is only a guide but likely somewhere near the final calculation) you would need around 107mcgs Levo. That means you're probably on around half the dose you need to be at the moment.

A word about the cost of supplements. I know we are going through tough times financially with the cost of living crisis. Your body doesn't know this though and still needs as much of a supplement as it did before we were all a bit more cash strapped.

If you're only taking half a serving of a supplement then in many ways you are wasting your money (unless you have tested and found you only need half a dose) and almost may as well not take it at all. You might be saving money, but your body will be missing out on what it needs to be well.

Supplements improve health issues.

[melissa-b in reply to GlowCoach]

Thank you, I'll mention this to the GP after I get retested!

Thanks again for the recommendation on the Omega-3 supplement. I wanted to clarify my comparison was about the dose per capsule, not the total daily dosage or the cost. Each capsule of my current Omega-3 provides almost the same amount of Omega-3 as one capsule of the supplement you mentioned. The main difference is the serving recommendation—mine suggests 1 to 2 capsules a day, while yours recommends two for the effective dose. That's why I was just taking one, as it was the suggested dose (not half a dose). My point was to highlight that on a per-capsule basis, our supplements are very similar, but the ones you linked to are cheaper than the ones I take (which is great!). I wasn't taking one of the capsules to cut costs. I hope this clears up the confusion!

The Levo dose calculation is included in the NICE guidelines which your GP should be following but yoou need to sort out the reason your FT4 is possibly looking higher than it should be.

nice.org.uk/guidance/ng145

[GlowCoach Administrator in reply to melissa-b]

Bare in mind you need around 2mg a day total of omega 3. It gets confusing because omega 3 is broken down into components like DHA & EPA which your body uses differently.

The whole Omega 3 supplement market is tricky to navigate as some are just cheap junk that won't make you well, they don't have preservatives (trocopherols) that mean the oils will go off before you even take it, and there is no standard certification.

You do need to be spending around £20-30 a month on Omega 3 to get a decent product. You do get what you pay for.

I also found this product that has a high amount of DHA : nutravita.co.uk/products/ve...

[melissa-b in reply to GlowCoach]

Ah I see! Thank you so much for the link, they look really good as well. It is confusing looking at supplements (especially as there's so many out there and it's not all very clear). Also, I did think the MyProtein algae supplements looked quite good, but when they came they were as big as horse tranquilisers and I couldn't take them 😭

[melissa-b in reply to melissa-b]

Thank you for the edits moderation team - I'll see how my next blood test goes and try to get to the bottom of things! <3

[HypoAnna in reply to GlowCoach]

Good information. I'd like to add that le levothyroxine has got a narrow therapeutic dose that means that 25mcg of the dose adjusting can be too much for some. In addition, some people may only benefit from 25mcg levothyroxine in the case of subclinical thyrodism and small body weight.

[SlowDragon Administrator]

Absolutely get retested

50mcg is only standard STARTER dose

Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine

For full Thyroid evaluation you need TSH, FT4 and FT3 tested

Also both TPO and TG thyroid antibodies tested at least once to see if your hypothyroidism is autoimmune

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum

About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high TPO and/or high TG thyroid antibodies

Autoimmune thyroid disease with goitre is Hashimoto’s

Autoimmune thyroid disease without goitre is Ord’s thyroiditis.

Both are autoimmune and generally called Hashimoto’s.

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

20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis

In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)

Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease and if left on inadequate dose levothyroxine

Request/politely insist GP test ferritin, folate, B12 and vitamin D

Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip

[melissa-b in reply to SlowDragon]

Thank you, I'll ask my GP to retest me - hopefully they will! They said they do not and will not test T3, though... Only TSH and T4

My TPO and TG thyroid antibodies have been tested 3-4 times, and I do not have Hashimoto's

My ferritin, folate, B12, and vitamin D were tested and are all almost optimal now (apart from ferritin which is at a very good range, but just takes forever to raise it!)

I'll ask for an early morning appointment, and I do take my levo after the blood test - but I do have to eat and drink otherwise I pass out and have seizures... Are there any certain foods I can stick to, on the morning of the blood test? Thank you so much

[melissa-b]

Edit: Sorry the Imgur link didn't work! Here's one that works - imgur.com/a/P0vGcpB - showing my eyebrow and hair loss, and a photo of my weight gain from the NHS app

[melissa-b in reply to melissa-b]

So sorry, not sure why Imgur isn't working! I'll reply with the photos here, briefly.

NHS results

[melissa-b in reply to melissa-b]

Hair loss

Hand held out showing hair loss

[melissa-b in reply to melissa-b]

Eyebrow hair loss/thinning (without plucking them)

Eyebrow hair loss comparison

[HealthStarDust]

Hi Melissa,

Too many weeks have passed to make a judgement on your January results. I would recommend private testing as your GP can’t/won’t do FT3 and also ask your GP to be referred to endocrinologist as your TSH is quite high for top of a range FT4. I wonder if your high TSH may reflect a non thyroid illness or stress or some other factor that may have affected result.

So, irrespective of the TSH result, which usually can be trusted to increase dose, since your FT4 is quite a high as it is, those results need a closer investigation. Perhaps your pituitary or sex hormones needs looking at.

FYI I recently discovered vitamin C effects blood test results so I stop taking them a few days before my test. Did you have your blood test as suggested on the forum

Perhaps rule out pregnancy if possible as those results are funky.

[melissa-b in reply to HealthStarDust]

Hi, thanks for commenting! Which January results?

I did have a private test via Medichecks (which showed just a high TSH and everything else normal), but my GP at the time refused to acknowledge the blood test. They also said it's impossible for me to be sent to an endocrinologist (I sent a letter in to the practice manager as well).

I do have a lot of other things going on at the moment - postural orthostatic tachycardia syndrome, hypermobile ehlers-danlos syndrome, mast cell activation syndrome, PTSD, depression, anxiety, ADHD, etc. I also had an abnormal sleep study (take home oximetry test) and I'm waiting to have an in depth sleep study in hospital, so not sure what's going on there. Could be any of that, I guess! My T4 has been elevated at exactly 14.4 since March 2023.

I had some of my pituitary hormones tested back in 2021 (I think), as I was bleeding non-stop for months, but they were normal. My GP wanted me to come off the mini pill for 3 months to be able to test my hormones, but I tried and it was unbearable, especially exaggerating my depression and my POTS symptoms (more fainting/seizures etc) - so a bit stuck there!

No chance of being pregnant. The blood test earlier in 2023 was in the morning, fasted, no levo, and the latest one in November wasn't a fasted one, nor in the morning (just levo taken afterwards), as I had a severe vasovagal response and fainted, had a seizure, etc, during a morning blood test and was told to make sure I eat and drink beforehand to prevent another seizure.

I could ask the GP to retest my TSH and T4 levels, and have a morning (non-fasted, though) test?

Thank you for taking the time to reply <3

[HealthStarDust in reply to melissa-b]

The test results you posted are before January this year?

[melissa-b in reply to HealthStarDust]

Yes that’s right - you said “your January results” pertaining to the results being in January, which was why I was confused!

[HealthStarDust in reply to melissa-b]

Ah. I missed the ‘before’ in my orginal post.

Making a judgement on your dose or next steps based on such old results is not a good idea. Perhaps you TSH was high due to illness or stress. It’s best to check again.

[melissa-b in reply to HealthStarDust]

Ah I see! That’s true, I’ll definitely ask to get retested. All of my previous results are on my profile and my TSH has always been elevated, although the lowest it’s been is 2.3 which isn’t bad. Maybe it isn’t my thyroid then after all; not sure what else can cause weight gain, thinning hair/eyebrows and fatigue but I’ll have to look into it

[Breadsauce1]

Hi Melissa. I'm the same as you. I'm on medication but still gaining weight, my eyebrows have virtually disappeared. I also have terrible aches and feel very tired and cold all the time. I've been told I'm on the correct strength of meds so don't know what else to do. Take care.x

[melissa-b in reply to Breadsauce1]

I’m so sorry that you can relate it’s absolutely horrible and so frustrating. I hope you can find answers soon ♥️

[Breadsauce1 in reply to melissa-b]

And you x

[Jellyfish83]

Hi Melissa,

I'm so sorry to hear you're struggling such a lot and getting inadequate support from your GP, who sounds terrible. I'd recommend looking into changing your GP practice or perhaps your GP within the practice you're in - maybe asking friends about their GP's and seeing if there are any outstanding ones. I switched a couple of years ago on the advice of a friend and it's made an absolute world of difference - my GP is really thoughtful and kind and interested and the practice as a whole is brilliant.

Have you looked into supporting your adrenal glands? Particularly because you have PTSD and it sounds like your body has been struggling for a while, they might need some attention. Dr Barry Durrant-Peatfield talks about this in his book (Your Thyroid and How to Keep It Healthy - available online for a few quid second-hand) - he emphasises that in order for the body to process and use T4, the adrenals need to be working well. If they're not, the T4 can remain unused and build up in the body, potentially becoming toxic. Since your T4 and TSH are both high and you're having hypothyroid symptoms, perhaps your body isn't converting the T4 to T3.

I'd definitely recommend giving Barry's book a read - there's a lot in there and his overall goal is to empower you as a patient with information and ways to understand both your condition and what you can do to help yourself.

I'd also recommend looking up Dr Michael Lam, who specialises in adrenal fatigue and has some brilliant articles about the links between thyroid and adrenals, and thyroid, adrenals and ovaries.

Wishing you the best, Melissa ❤️

[melissa-b in reply to Jellyfish83]

Thank you so much for your reply, it’s greatly appreciated! I had my adrenal glands tested as well (cortisol) and it was all completely normal.

My GP is really fantastic, I’m sorry that I made it sound like she isn’t - I think it’s more the practice itself and it’s regulations as to why I can’t get T3 tested or see an endocrinologist. The GP I’m seeing is the only person who took me seriously, sent me to the long COVID team where I was finally diagnosed with MCAS and POTS (despite being told previously everything was in my head), got me on B12 injections when other doctors denied this, made sure to test and keep testing my ferritin, folate, vitamin D, referred me to cardiology, rheumatology, sleep studies, chest X-rays, spirometry tests, autism referral, mental health referral, and did further testing like an autoimmune panel, allergy testing, etc. She’s been a lifesaver compared to the GPs I’ve seen before! If anything, I’ve probably just thrown too many things/problems at her. If I ask her for a thyroid blood test and go from there, it might work better.

I’ll definitely have a look at those resources, anyway - thank you so much again for helping ♥️

[Jellyfish83 in reply to melissa-b]

Ah, that's brilliant Melissa - sorry for jumping to conclusions! It makes such a difference to have someone in your corner and I really hope that between you you get it cracked! There's a world of information and interventions out there - there'll be a way for you to feel okay and it will be worth all the effort to find it ❤️

[melissa-b in reply to Jellyfish83]

Not at all - the GPs I saw before her were absolutely attrotious! She did at least retest my TSH in November, whereas the other GP said to leave it 6 months before I could test it. Thank you so much, it's such a frustrating situation to be in, hopefully it gets sorted soon, whatever it is. Thank you for your advice again <3

[Teddyandolive in reply to melissa-b]

Interesting to see in your replies many wondering whether your difficulties might stem from something other than thyroid issues. I too have elevated tsh with t4 at the top of reference range (whilst taking Levothyroxine) and remain symptomatic although somewhat improved since diagnosis. Private blood tests show t3 lagging way behind t4, but endocrinology rejected my GP referral saying just that - must be something else. I’ve had that many investigations over the years, nothing other than thyroid disease (I have Hashimotos) has come to light. Currently trialling HRT.

[melissa-b in reply to Teddyandolive]

Really! Have you tried taking T3? Bless you, it's so frustrating, isn't it? It could be my hormones as well, but I can't come off of the mini pill at the moment... I hope you get some answers <3

[Teddyandolive in reply to melissa-b]

Have recently introduced a teeny tiny dose of privately sourced t3 (seem to be super sensitive to everything) after a failed trial of NDT. It’s beyond frustrating!

[silverbelle51]

What is your Iodine Level? Could you have Reverse T3 . Then there is how much Soy in your diet , which is a hormone disruptor! Check out the site agutsygirl.com that will give you the many names and sources of Soy. I have come to the conclusion Hypothyroid is the most mis diagnosed issue and leads people's life into total chaos! It happened to me and I have great empathy with people who struggle with the "Hellish Roller Coaster" that a person's life that is diagnosed with Hypothyroid becomes !

[melissa-b in reply to silverbelle51]

I don't know that I've ever had my iodine levels tested, to be honest! What's Reverse T3? I'm vegetarian but I don't eat a huge amount of soy (more Quorn than anything else), but I'll bare that in mind - thank you! It is an absolute nightmare 😭

[silverbelle51 in reply to melissa-b]

It has been a learning situation for me. Only Naturopaths and Doctors who have Intergrated Practices check such things as Iodine levels and many Ins. Companies in the U.S. only pay for a handful of vitamin/mineral levels . I have researched signs and symptoms of deficiencies and too much and use that as a guide cause I just don't have the money or access to an Intergrated Practice . I follow the guidelines for dosage and quite honestly I pray a lot! Reverse T3 is when your thyroid hormone does not convert to the usable form in your body . Meaning you are producing the thyroid hormone, but your body isn't able change it to the useable form. I believe it is a shortage of Iodine that causes that. I have read a lot in the past about Selenium, but had not read about how frequently Iodine is usually the problem until this year. Most literature/ people assume Iodine is plentiful, but our foods are not as healthy as they once were with all these "Factory Farms" and short cuts and money saving methods of producing food. Soy is hidden everywhere a super good and helpful site agutsygirl.com . This person's site is a wealth of information about Soy. I read somewhere I can't recall where the healthiest Soy is fermented soy. When you get tagged with the "Hypothyroid Tag " it is a picnic for doctors and hell for you. Not all that sure doctors are all that smart about things like thyroid. I think they have" procedure manuals "and just follow along . Like it is all most a guarantee that once you are placed on thyroid replacement you will have an elevated BP within a year and after you are on BP drugs you will have some form of prediabetes or diabetes pretty soon. It is like the course it "plotted" for you! Here in the U.S. there are fewer and fewer general practitioner or as they were nicknamed "Gate Keepers" for the Insurance Companies who actually run Healthcare along with "Huge Pharma" . They make more money in specialties, but I do think many are sick of working so hard to get an M.D. and then being lead around by the nose sort to speak. By the time you make it to a specialist you are in fact a medical nightmare! I wish you well and always happy to share . Life and good health is precious to us all !

[melissa-b]

Here are my latest results, as requested -

Serum free T4 level 12.0 pmol/L [7.9 - 14.4] Normal 05 Apr 2024

Serum free T3 level 5.7 pmol/L [3.8 - 6.0] Normal 05 Apr 2024

Serum TSH level 4.61 mIU/L [0.38 - 5.33] Normal 05 Apr 2024

As suggested, I followed everyone's advice re the blood test, and also taking the levothyroxine earlier (leaving more of a gap before eating or taking other medications)

Should I ask to go up on my 50mcg dose? I have been feeling a lot more anxious lately so I hope it's not related! Thank you everyone