Advice needed re test results

[Morgan0103]

Hi everyone,

Apologies in advance for a fairly lengthy account but I am hoping for some advice as you all seem to be so knowledgeable.

I have discovered this forum within the last few months and it has proved to be a veritable goldmine of info which I have been so grateful for. I was diagnosed with subclinical hypothyroidism in December 2023, having had symptoms for maybe a year to 18 months before that. (I can tick off about 48 of the symptoms checklist on the Thyroid UK website.)

I underwent various tests in September 2023 and the only thing that was found to be a problem was that my TSH was too high (7.44). I was told that this level would not warrant treatment (despite all the symptoms) as it was under 10, but that I should return for a repeat test within 3 months, which I did in December. The level at that test was 5.94.

What I now know (from this forum), but which I did not know then, was that this should have warranted me being offered treatment (NHS guidelines) but instead the response from the GP was a very indignant, "We cannot treat you if you are not ill!" I said that I understood that, but then, if not hypothyroid, then what was wrong with me? He replied, "Maybe you're depressed." (Insert eye rolls here!!!) I was told to come back again in the summer for repeat tests.

As an aside, I have a terrible needle phobia so, suffice to say after the attitude I received, I never bothered to go back and I have continued to suffer in silence. I take a vitamin D supplement, as well as B12 and low dose selenium. I eat low carb mostly but not gluten free (celiac test was negative) but I feel much better when I go no carb. (I also suffer with primary lymphedema so retain a hell of a lot of water!)

Anyway, I've reached a point now where I'm so sick of feeling rubbish (the weight gain in particular is destroying all of the little self confidence I once had - I genuinely have to drop to 600-800 cals a day to lose anything), and having read the extensive advice on this forum, I have just ordered a Blue Horizons full thyroid panel blood test (i think it was the "Gold" one) which I should hopefully get done within the next week or so. I will post my results here once I get them, but for now I will post the previous results I had (with lab ranges in brackets). Both tests were done before 9am having drunk nothing but water.

I guess I am just looking for any advice or words of support from others who have been there and done that! As well as guidance on how to broach the subject again with my GP. (Assuming of course that the Blue Horizons results come back indicating there's still a problem with my thyroid. If not, I guess it'll be back to square one!)

September 2023:

TSH - 7.44 (0.35 - 5)

Free T4 - 11.7 (9 - 20)

Ferritin - 54 (20 - 275)

B12 - 204 (180 - 914)

Vit D - 121 (50 - 150)

Folate - 7.5 (2.7 - 34)

December 2023:

TSH - 5.94 (0.35 - 5)

Free T4 - 12.8 (9 - 20)

(Nothing else tested)

Thanks in advance and well done to anyone who managed to read all the way down to here!!

[humanbean]

I eat low carb mostly but not gluten free (celiac test was negative)

I got a negative coeliac test nearly 15 years ago. As a result I carried on eating gluten for several more years before eventually going 100% gluten-free as an experiment.

I got benefits within a week. I wish I'd done it sooner.

(Sadly I have relapsed, and am struggling to go 100% gluten-free again, although I don't eat gluten a huge amount. But without being ruthless about avoiding gluten I am doing myself no favours at all.)

I would suggest that you try going 100% gluten-free for 3 - 4 months and seeing what happens. If you get no benefit then go back to eating gluten again. You may find you feel worse if you do. But if nothing nasty happens when you start eating gluten again, just carry on eating it.

[Morgan0103 in reply to humanbean]

Thanks for your advice humanbean ! Yes, I definitely feel better in myself when I remove all carbs (aside from salad veg like cucumber, peppers, lettuce etc), but it's hard, isn't it?! I could live my whole life never eating pasta, rice, beans lentils, potatoes... but bread!!! God it's lovely! I will definitely take your recommendation on board, however. Thanks so much for taking the time to help, it's really appreciated!

[greygoose in reply to Morgan0103]

Not all carbs contain gluten. There's no gluten in beans, lentils and potatoes. And you do need some carbs to convert T4 to T3. So, no-carb is not really a good idea because it will make you more hypo.

Unfortunately, the average doctor knows nothing about thyroid. And that quip about not treating you if you're not ill just goes to show how little your GP knows about it. Given that an 'normal' (euthyroid) TSH is around 1, a TSH over 5 is pretty hypo! Not surprising you had symptoms. Insisting that the TSH should be over 10 before treatment is a medical ruse to diagnose as few people as possible with hypo. Because the last thing they want to do is diagnose hypothyroidism. Ask your GP what the point of having a range is when they just blatantly ignore it and insist the TSH has to go up to 10?!?

B12 - 204 (180 - 914)

Folate - 7.5 (2.7 - 34)

Your B12 is dangerously low. It should be at least over 550. You risk permanent neurological damage with a B12 that low. Your doctor should be testing you for Pernicious Anemia. Such a low B12 will doubtless be causing a lot of symptom.

Your folate is also low, but don't start supplements until you've had your test for PA or it will skew the results.

[Morgan0103 in reply to greygoose]

greygoose wow! Thank you so much for your reply. It certainly pulled me up rather short when I read it! I shouldn't be surprised but I'm honestly shocked by your comments surrounding B12. Sure enough, when I googled it, I am seeing that anything between 200-300 should warrant further testing. Of course this was never mentioned!! This lack of care and neglect of thorough investigation really is disgraceful. We really are just left to fend for ourselves.

I believe B12 is included on the private blood test I have ordered so I'll be interested to see what my current level is. As you have said, if it remains on the low side, I will be sure to obtain a test for pernicious anemia. I have a feeling the next few months are going to push my needle phobia to its limit!

Also thanks for letting me know that no carb is a bad idea and can exacerbate hypo symptoms. That is hugely useful to know. I'm aware that beans, lentils and potatoes aren't an issue due to gluten - I just tend to avoid them as they usually give me a horrible stomach ache. My digestive system can't seem to cope with them over a couple of bites so I generally steer clear. Also my lymphedema is much improved on a no carb diet, so I guess I am going to have to find a happy medium on this issue!

Thanks so much again. I really appreciate your response 😀

[greygoose in reply to Morgan0103]

It's never mentioned because doctors just don't know. They get no training on nutrition in med school, and very little on the endocrine system - of which the thyroid is just a small part. And they are not trained to interpret blood test results. For them, anything within the range just has to be good, even right at the bottom.

Your digestive system can't cope with beans and lentils because your stomach acid is more than likely low. Most hypos have low stomach acid due to low levels of T3. Have a look at this article:

healthline.com/health/hypoc...

[Morgan0103 in reply to greygoose]

greygoose is there anything you don't know?! This is super interesting, as is the article. I suffer so much with bloating and indigestion. I never would have known this could be due to having low stomach acid and in turn be linked to an underactive thyroid.

In theory, if the Thyroid issue is addressed (and potentially the B12/anemia issue), should the body naturally resume making sufficient stomach acid, or would that also need separate treatment?

[greygoose in reply to Morgan0103]

Well, it should, yes. But whether it will or not remains to be seen.

Oh, also make sure you get enough salt! Low-salt diets can also lower stomach acid.

And, yes, there's a hell of a lot I don't know!

[jgelliss in reply to greygoose]

SPOT ON GG.

[SlowDragon Administrator]

I take a vitamin D supplement, as well as B12 and low dose selenium

B12 - 204 (180 - 914)

Folate - 7.5 (2.7 - 34)

In addition to daily B12 you should add a separate vitamin B complex

once your serum B12 is over 500 (or Active B12 level has reached 70), you may be able to reduce then stop the B12 and just carry on with the B Complex.

If Vegetarian or vegan likely to need ongoing separate B12 few times a week

Low folate

supplementing a good quality daily vitamin B complex, one with folate in (not folic acid)

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

Difference between folate and folic acid

healthline.com/nutrition/fo...

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

thyroidpharmacist.com/artic...

B vitamins best taken after breakfast

Igennus B complex popular option. Nice small tablets. Most people only find they need one per day. But a few people find it’s not high enough dose and may need 2 per day and/or may need separate methyl folate couple times a week

Post discussing different B complex

healthunlocked.com/thyroidu...

Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule) Thorne can be difficult to find at reasonable price, should be around £20-£25. iherb.com often have in stock. Or try ebay

IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 3-5 days before ALL BLOOD TESTS , as biotin can falsely affect test results

endocrinenews.endocrine.org...

In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg) and continue separate B12 if last test result serum B12 was below 500 or active B12 (private test) under 70

[Morgan0103 in reply to SlowDragon]

Thank you so much SlowDragon for such a comprehensive run down of vitamins and levels. That is so helpful! Really appreciate you taking the time to reply!

[Lottyplum]

The first thing I would say is that your GP needs a slap!! Might shake up what brains he has - as regarding thyroid issues, he hasn't got many!! I will leave the rest to our wonderful Admins!!

[Doris11 in reply to Lottyplum]

Gp Incompetent I’d say! Just awful 😞 What is wrong with these GPs! Do they not read and update themselves? When I was nursing I had to do research (updates) otherwise I they wouldn’t put me on the register! 🙈

[Morgan0103 in reply to Doris11]

Totally agree Doris11 . My mum worked in nurse education for years and she always said she would rather put her faith in what a nurse told her over a doctor - exactly as you say, because nurses are required to keep their training and professional development up to date whereas doctors can continue spouting the theories they picked up in medical school, even if that was 50 years ago! I look forward to returning to my GP and giving him a few pointers!

[Doris11 in reply to Morgan0103]

🙈🙈🙈🙈🙈🙈🙈🙈 It’s so wrong!

Take some photocopies of the NICE Guidelines with you to show the Gp! I did ☺️

1. Thyroid Guidelines

2. B12 Guidelines

My B12 was 221! So could be deficient! I asked for some B12 injections and my Gp refused! There like £2 each! I even said I will inject myself and she still refused 😔😔 bear in mind I’d been taking B complex tablets for over a year! So they are not absorbing clearly! But I’m vegetarian and have a Gastric band! (Which can affect absorption).I inject myself monthly.

Luckily my Gp helped me with Hypothyroidism but I had to beg her practically to get tiny increase 💕💕💕💕.

Good luck Morgan0103 in your endeavours ☺️☺️ this site is amazing and I’m am so glad I found it 💕

[Morgan0103 in reply to Doris11]

Thanks again Doris11 . It seems a common theme that we have to fight for treatment that should be freely offered. You're very brave injecting yourself! Just the thought of it makes me go a bit lightheaded.

I will definitely take printed copies of the Thyroid and B12 guidelines with me when I return to my GP; that's a good idea. Have my Blue Horizons test booked for 30th April so will be back on here to update once I have the results.

Have a lovely Bank Holiday weekend!

[Doris11 in reply to Morgan0103]

And you 💕

[Morgan0103 in reply to Lottyplum]

Haha thanks Lottyplum , very well said! I'm sadly already well versed in having to be an "expert patient" with regards to my primary lymphedema as noone has the first clue about that...I had hoped something as "mainstream" as hypothyroidism might be a different story, but clearly not. Makes you wonder what GPs do actually know....?!

[Lottyplum in reply to Morgan0103]

They don’t know much! That’s why I do my own private blood tests and pay for my own T3! They don’t even know what T3 is for most times!!

[jgelliss in reply to Lottyplum]

It's very unfortunate how LITTLE DR'S KNOW about THYROID ISSUES. I will let GreyGoose comment with her Great chosen words. But this is not only shamefull but out right Tragic. It sounds so familiar for weight loss weight exercise more etc. Been there and Done that all to well. For years Dr's strung me around. Wishing you best wishes to find a decent Dr that is sympathetic and Cares.

[Pauchi55]

Sympathise, my GP was typically the same, within normal range so wouldn't refer and "Don't treat symptoms"

Tried private and had over 2 years with all sorts of tests and theories, T4 not converting, put on HRT, on T3 medication, iron supplements etc. Last suggestion was referral to fatigue clinic! Still no change to symptoms. Eye problems have developed.....Back to GP care and have found one that is listening and sounds bothered. Having more regular testing and tweaking the levothyroxine dosage.

Medichecks tests are useful as they do test T3 at least and comment on the results.

Good luck! ....but shouldn't be down to luck should it!

[Morgan0103 in reply to Pauchi55]

Pauchi55 I am so sorry to hear that even with medication you are still continuing to suffer with symptoms. How unbelievably disheartening. No, getting a solution to our health problems should most definitely not be down to luck. (Nor having to spend hundreds on private tests!)

Thanks for taking the time to reply and I really hope that things start to improve for you soon. ❤️

[Growlady]

Hello, so sorry you’re struggling to get help. It sounds exactly like how I felt! Even the weight I was in a deficit too and it just made my symptoms worse. I rolling my eyes with you at the antidepressants.

Tsh is such a spectrum I wish more doctors took this into account, because if there is someone walking around at the top the range (3 in your case) they might feel great but if they were at 5 they would feel awful so surely if your outside the bottom end of the range that’s enough to get symptoms to be taken seriously what if your normal is 3?

On my nhs tsh range it’s (0.5-4)

Are you able to see a different doctor maybe a second opinion?

[Morgan0103 in reply to Growlady]

Growlady yes I totally agree! The value of TSH is surely only one small piece of a very large puzzle. Like you say, someone could feel absolutely fine at a level of 3, but for someone else they would feel awful. It's not a "one size fits all" situation and I really don't understand why symptoms aren't given far more significance than they are. It's as though GPs think we are all desperate to be diagnosed with a lifelong illness!! Nothing could be further from the truth. I've already got one of those and would much rather not add to the collection.

Once I have my new test results I'll be returning to my GP but I will be insisting on seeing a different one and giving a very detailed explanation as to why the last one wasn't fit for purpose, in no small part due to the fact he chose to go against NHS guidelines with no valid reason! (I can only assume antidepressants are cheaper than levothyroxine.)

Assuming you are now being treated, have you seen any improvement in your symptoms and have you been able to lose any weight?

[Otto11]

Just a quick note about the importance of Bitamins. At the beginning of lock down my GP’s stopped giving B12 injections. I had been having them every 3 months for about 12 years. By 2021 all my Vitamin levels had halved. I had no idea why. By 2022 they had halved again & because I was so unwell I was admitted to hospital without being seen I might add but had the forethought to take those results in with me. They admitting Consultant stated I needed urgent referral to Endocrine & asked my GP to refer & re instate my B12 injections. He refused twice but eventually caved in & the rest is history. I’m still being seen by Endocrinologist & still trying to balance the figures. But it was the Vitamin levels that started the ball rolling. That’s how important they are & how useful my GP’s are too. Thank goodness for the help from this group. They are amazing. Good luck.