Latest test results - can you help - I am barking up the wrong tree?

[crabapple1]

Good morning, this if my first post here and I was hoping that someone could help with interpreting my test results and giving some advice as to what I can do next!

I had a somewhat disappointing consult with my GP this morning about my hypothyroidism. As a short history, back in early 2020 my hypothyroidism seemed to suddenly worsen and I was experiencing bad anxiety & depression, fatigue, migraines, weight gain, etc. etc. At that time (April 2020) my TSH was 17. My Levo was increased to 175mg/day and I did start to feel relatively better (I am still on this dose). But I feel I am now on a plateau where I am still experiencing the above symptoms, just not quite as severe, but additionally I have started to have (quite scary!) heart palpitations, have developed tinnitus, my anxiety is worse than before, and I just can't shift any weight.

I have been trying to follow a gluten- and dairy-free diet but am struggling with it (so hard to stick to and somehow makes me feel worse!) I am taking magnesium citrate before bed, selenium with breakfast and taking ferrous fumerate tablets too, about 1200mg per week.

These are my most recent test results, from 13/07/2022. The blood test was just after lunch and I didn’t take my Levo for 24 hrs beforehand:

Serum vitamin B12 level 233 ng/L [120.0 - 900.0]

Serum C reactive protein level 6 mg/L [0.0 - 5.0]

Haemoglobin concentration 118 g/L [115.0 - 165.0]

Total white blood count 5.1 10*9/L [4.0 - 11.0]

Platelet count - observation 271 10*9/L [150.0 - 400.0]

Haematocrit 0.36 L [0.37 - 0.46]

Red blood cell count 4.06 10*12/L [3.8 - 5.8]

RDW 14.6 % [11.0 - 14.8]

Serum TSH level 3.86 mu/L [0.3 - 5.0]

Serum free T4 level 10.9 pmol/L [7.9 - 16.0]

Serum free triiodothyronine level 3.2 pmol/L [3.8 - 6.0]

Serum follicle stimulating hormone level 8.8 u/L [> 3.9]

Additionally, back in March 2022, I convinced the GP to check my antibodies and this was the result back then (he would only do TPO):

ANTI THYROID PEROXIDASE > 1006 iu/mL [0.0 - 9.0]

The GP this morning said that he thinks my issues are not to do with my thyroid, he thinks that I could be perimenopausal and should see a “hormone doctor” (not sure what he means). He advised me to do some online CBT and said that he would refer me again to the Endocrinologist, but that it could be a 9 month wait (I know the Endo here, he won’t say anything different to the GP - been there before, he’s very old school and just looks at TSH). My CCG doesn’t prescribe T3 and the GP said he doesn’t think T3 would help anyway, that lots of the hypothyroid patients he sees have low T3 levels.

Where do I go from here? I feel like this is a dead end now. I can’t afford to go private and am thinking that maybe this is just the way I feel and to accept it...as you can probably tell, I'm feeling confused and a bit defeated at the moment. Any advice would be hugely appreciated.

[greygoose]

Your doctor is a muppet. You have Hashi's and your FT3 is below range. How can he possibly think your problems are not due to thyroid??? As to admitting that his other patients have low FT3, he should be damned well ashamed of himself! It's his job to make sure they have decent levels of FT3. But, I don't suppose he even knows what it is. Not many of them do. But this one knows absolutely nothing about thyroid.

The only thing I can possibly suggest, in light of this abysmal ignorance, is buying your own T3 and self-treating with it. It's the only way you're going to get well. ;(

[crabapple1 in reply to greygoose]

Thank you for your reply Grey Goose. Your muppet comment brought a smile to my face.

The GP I spoke to before this one also seemed to want to go down the perimenopause route, he did refer me to the Endo too - but the Endo replied a few days later saying there was no reason to see me and therefore the request was denied.

Maybe they are all muppets.

I feel quite scared about buying thyroid medication online.

[greygoose in reply to crabapple1]

They probably are all muppets, and you maybe had a lucky escape when the endo refused to see you. Endos are not the hormone specialists they're cracked up to be. They are, in the main, diabetes specialists, and do a lot of thyroid patients a lot of harm.

GPs will make any excuse to avoid correctly treating hypothyroidism. Claiming your symptoms are due to menopause is just one of their excuses. They are terrified of hormones and just don't want to be prescribing them. They are also very, very ignorant about thyroid.

As long as you have a recommended source for T3, there is minimal risk. I wouldn't recommend you buy off body-builder sites, that's asking for trouble. But, if you decide that's what you want to do, ask on here for people to PM you links to their trusted sources.

[SlowDragon Administrator]

Request/insist on 25mcg dose increase in levothyroxine

Results show you are under medicated

Which brand of levothyroxine are you currently taking

Do you always get same brand levothyroxine at each prescription

75mcg tablets are only made by Teva

Teva levothyroxine upsets many people

Approx how much do you weigh in kilo

Guidelines on dose levothyroxine by weight is approx 1.6mcg per kilo per day

If on higher dose, this suggests poor gut absorption and/or lactose/dairy intolerance

You need vitamin D tested

B12 is far too low

Are you vegetarian or vegan?

Request testing for Pernicious Anaemia by GP before starting on B12 and daily vitamin B complex

[crabapple1 in reply to SlowDragon]

Thank you so much for your detailed reply, SlowDragon.

Answers to your questions:

Which brand of levothyroxine are you currently taking - Bit of a mix. My 25mcg and 50mcg tablets are Northstar. My 100mcg tablets are Accord. But I notice that I'm currently halfway through a pack of 25mcg tablets that are Teva, from my last prescription.

Do you always get same brand levothyroxine at each prescription - I've no idea now!! I've never looked at the brands before, or noticed which ones I'm getting.

Approx how much do you weigh in kilo - ~80kg. I am 5'6". I've gained 10kg without much effort in the last 2 yrs.

Are you vegetarian or vegan? - Not for the last 8 years. I was vegetarian between the ages of 10-32, with intermittent periods of veganism in my twenties and early thirties.

[SlowDragon Administrator in reply to crabapple1]

So your dose is higher than guidelines would indicate …..so that might mean you have poor absorption and gut issues or lactose intolerance

Get dose increase to 200mcg …and take note as to which brand(s) of levothyroxine suit you

If your on lactose free diet…..you should have lactose free levothyroxine

That’s either

Aristo (100mcg only)

Teva (contains mannitol and upsets many people)

New lactose free option

Glenmark

[SlowDragon Administrator in reply to crabapple1]

Bit of a mix. My 25mcg and 50mcg tablets are Northstar. My 100mcg tablets are Accord. But I notice that I'm currently halfway through a pack of 25mcg tablets that are Teva, from my last prescription.

for some people (usually if lactose intolerant, Teva is by far the best option)

Teva, Glenmark or Aristo (100mcg only) are the only lactose free tablets

Most easily available (and often most easily tolerated) are Mercury Pharma or Accord

Mercury Pharma make 25mcg, 50mcg and 100mcg tablets

Accord only make 50mcg and 100mcg tablets

Accord is also boxed as Almus via Boots, and Northstar 50mcg and 100mcg via Lloyds ....but Accord doesn’t make 25mcg tablets

25mcg Northstar is Teva

List of different brands available in U.K.

thyroiduk.org/if-you-are-hy...

Posts that mention Teva

healthunlocked.com/search/p...

Teva poll

healthunlocked.com/thyroidu...

Once you find a brand that suits you, best to make sure to only get that one at each prescription.

Watch out for brand change when dose is increased or at repeat prescription.

New guidelines for GP if you find it difficult/impossible to change brands

gov.uk/drug-safety-update/l...

If a patient reports persistent symptoms when switching between different levothyroxine tablet formulations, consider consistently prescribing a specific product known to be well tolerated by the patient. If symptoms or poor control of thyroid function persist (despite adhering to a specific product), consider prescribing levothyroxine in an oral solution formulation.

[PurpleNails Administrator]

Full replacement dose is roughly 1.6mcg per 1kg of weight.

Is 175 about right for your weight.

Do you have stomach issues?

Most feel well if TSH around 1, and FT4 & FT3 in top 3rd of range. Your levo could be increased.

Your FT3 is below range.

Most GPs are taught if TSH in range thyroid must be ok, but to know he has many patients with low FT3, and doesn’t think it matters is a huge concern.

Can you see another GP?

Poor Nutrients can lower T4:T3 conversion.

Test Folate, ferritin, & Vitamin D. If these aren’t optimal Levo won’t work well.

Your B12 is low.

Optimal is not same as in range which is acceptable to GP.

Your Haemoglobin is low, what has doctor done?

Has GP referred you to a “hormone doctor“? Usually GPs deals with thyroid & with menopause symptoms. Sometimes a GP has extra training in menopause hormone did they mean another doctor in practice? Referrals outside specialist remit will often be declined.

In theory an endocrinologist can commence T3 (although it’s made virtually impossible).

Getting adequately replaced and optimising nutrients first step.

Do you test as recommended (book draw for morning, fast overnight, delay dose until after draw)

Avoid biotin week before.

Do you always have same brand? Do you take dose away from other medication & food except water?

Private testing might be fastest option.

[crabapple1 in reply to PurpleNails]

Thank you so much for your reply too, PurpleNails.

Answers to your questions below:

Full replacement dose is roughly 1.6mcg per 1kg of weight. Is 175 about right for your weight. - No, using this calculation I should be on 125.

Do you have stomach issues? - I struggle a lot with bloating and constipation.

Can you see another GP? - I have been considering changing to a different GP surgery for some time now, for various reasons. Maybe this is my push to do so!

Your Haemoglobin is low, what has doctor done? - In March 2022 I was prescribed 630mg of ferrous fumerate per day. I never take that much because it really upsets my stomach if I take that much for extended periods. Nothing has been done by GP since then; GP this morning didn't even mention my iron-related results and I had to point out to him that I guessed my anaemia was no better.

Has GP referred you to a “hormone doctor“? Usually GPs deals with thyroid & with menopause symptoms. Sometimes a GP has extra training in menopause hormone did they mean another doctor in practice? - I've no idea, he didn't say. I am going to follow up and see what he meant.

Do you test as recommended (book draw for morning, fast overnight, delay dose until after draw) - I try to, very hard to get morning appointments here. I always get the earliest appointment I can, and I don't take that day's Levo dose until the next day.

Do you always have same brand? - As I said to PurpleNails, I don't know now! I have a mix of three different brands on the go at the moment, I've never tracked what brands I've been given before. What is the relevance?

Do you take dose away from other medication & food except water? - Yes, I take it at 5am each morning on its own.

[PurpleNails Administrator in reply to crabapple1]

Can’t add much more to excellent advice from others. Stomach issues could mean low absorption of levo & of nutrients.

If lactose & particularly Gluten an issues it tend to be all or nothing, tiniest amount of gluten can be a issue.

Being hypo can also cause low stomach acid which would result in bloating ect.

Finding brand which suits and staying with best brand for you might also make difference. If a certain brand doesn’t make a right dose buy a pill cutter and split pills.

By the sound of it your GP referred you to an endocrinologist not for the low FT3 which might make sense but for menopausal symptoms. That’s in the GPs remit surely, why hasn’t he treated. It seems as I predicted the referral was declined.

As you mentioned you have a few things to look into & work on improving and it will take a bit of time to work through and make slow steady changes.

Try to leave a week or two between starting a new supplements or changing doses so you can tell if you are reacting to a certain item.

[crabapple1 in reply to PurpleNails]

Thank you so much, I hugely appreciate your time and insights. It really has made a difference to my overall outlook this week and I'm really grateful!

[SeasideSusie Remembering]

crabapple1

I absolutely agree with Greygoose, enough said!

However:

Serum vitamin B12 level 233 ng/L [120.0 - 900.0] -ng/L is the same as pg/ml

This is a dire result.

According to an extract from the book, "Could it be B12?" by Sally M. Pacholok:

"We believe that the 'normal' serum B12 threshold needs to be raised from 200 pg/ml to at least 450 pg/ml because deficiencies begin to appear in the cerebrospinal fluid below 550".

"For brain and nervous system health and prevention of disease in older adults, serum B12 levels should be maintained near or above 1000 pg/ml."

Please check for any signs of B12 deficiency here:

b12deficiency.info/signs-an...

b12d.org/submit/document?id=46

If you have any then list them to discuss with your GP and ask for testing for B12 deficiency and Pernicious Anaemia. Do not take any B12 supplements or folic acid/folate/B Complex supplements before further testing of B12 as this will mask signs of B12 deficiency and skew results.

Folate should have been checked as it works with B12.

CRP is raised, this is an inflammation marker and it could be raised due to your Hashi's (confirmed by raised thyroid peroxidase antibodies).

Haemoglobin is near the bottom of the range, Haematocrit is below range - suggesting possible anaemia.

RDW is top of range, this could be due to nutrient deficiency (B12?).

Serum TSH level 3.86 mu/L [0.3 - 5.0]

Serum free T4 level 10.9 pmol/L [7.9 - 16.0]

Serum free triiodothyronine level 3.2 pmol/L [3.8 - 6.0]

TSH too high, FT4 too low, FT3 below range. All points to undermedication and the first thing to do is increase Levo until TSH is down to 1 or below then look again at FT4 and FT3. If FT4 has increased into the upper part of it's range but FT3 stays very low then that's poor conversion of T4 to T3. Optimising all nutrients may help but if all optimal then it could mean that you need to add T3 to your Levo.

Optimal nutrient levels:

Vit D: 100-150nmol/L according to the Vit D Council, Vit D Society and Grassroots health.

B12 - top of range

Folate - at least half way through range

Ferritin - half way through range although some experts say that the optimal level for thyroid function is 90-110ug/L.

[crabapple1 in reply to SeasideSusie]

Thank you so much, SeasideSusie - this info about B12 is eye-opening. All the symptoms I am currently struggling with are on the deficiency checklist.

I didn't know about optimum B12 levels and had never considered pernicious anaemia. It would make sense, as various GPs have failed to get to the root of why exactly I have been anaemic for so many years. I have never had my B12 checked before.

I am going to try to test and then optimise all nutrients as you suggest, and also try to stick with my GF and dairy-free diet, if indeed absorption issues are a problem causing my apparent undermedication.

I started the day off feeling really deflated but now I feel like I have a plan for the next few months. Thank you all so much.

[eeng]

There's a new version of iron called ferrous bisglycinate, which is supposed to be better tolerated and absorbed. It might suit you better than ferrous fumarate.

[crabapple1 in reply to eeng]

That's really good to know - I have noted this in my list of things to discuss with the GP. Thank you so much!