Higher TSH level and difficultly conceiving?

[Holmcross]

Hi!

I had a blood test a few years ago which showed serum TSH level as 5.1. They said not clinically relevant unless symptomatic and to repeat in 12 months. Unfortunately I forgot. I had a recent blood test which showed 4.16 which is only just under the upper limit of normal, 4.2.

I know that from googling studies, for best chances of conceiving it should be under 2.5. Has anyone had experience of this? I have doctors appointment for early April but I’m not really sure if they’ll do anything as it’s not classed as hypothyroidism even though it’s likely to affect chances of conceiving?

Thank you!

Ah, absolutely same re ADHD in my experience, hashi's can totally present as ADHD. It makes sense because the hypothyroidism is just slowing your whole system down, everything is firing on half a cylinder, brain included.

Your symptoms and experiences suggest that even though you are subclinical, you'd benefit from some medication. Do you have any other odd hashi's symptoms - excess earwax, really scaly dry knees, outer third of your eyebrows disappeared, a bit of a feeling like you have something in your throat, acid reflux...?

If it helps to know, hypothyroidism comes along with a host of potential vitamin and mineral deficiencies due to the impact it has on your gut. It might be worth asking GP to check B12, do a full anaemia panel, vit D, folate, etc.

If you're at the stage where you might want some supplements advice, do ask. I've tried 'em all!

@Lotsofworries That’s so weird about the ADHD thing, it does make sense.

I do have dry knees but I think always been a bit like that, my hands are very dry over colder months but don’t think that’s that unusual, and again always been like that. Think eyebrows and earwax are normal! I did have a month period of acid reflux for about 6 months or so ago which was weird, though fine now.

I also have IBS / issues with gut which have been going on quite a while, but have been worsening last few years. Food intolerances probably but not sure what, need to do fodmap to work it out.

I’ll ask GP do those other blood tests - B12, do a full anaemia panel, vit D, folate, are there any others? I was a bit deficient in folate & had to take supplements a few years ago. In 2022 my serum ferritin was 30 ug/L and B12 was 309. Not sure if this means anything! Any thoughts appreciated! May be asking for supplement advice after docs!

Oops sorry didn’t realise had attached so many photos 😁

Acid reflux is common with hypothyroidism (caused by low stomach acid) but if yours was a short spell, maybe not connected.

Gluten intolerance and celiac (which I can see you've been tested for and don't have) has a strong connection to Hashimoto's. It's to do with gluten proteins triggering the immune system. Have your IBS / gut issues been worsening in a way that would fit in with the way your TSH has been rising over the last decade?

Your B12 is on the low side. 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."

You can check for any signs of B12 deficiency at https://www.b12info.com/signs-and-symptoms/. If your B12 levels are low and your TSH has been stable for the last few years, it's possible that it's also the B12, not just the hypothyroidism, that's causing some of your symptoms.

Your ferritin is roughly same as mine currently. I'm receiving 6-monthly iron infusions to address my previously very low levels (my ferritin was 4 at its worst) BUT (this is relevant to you) - they are trying to get my ferritin to 50, as a foundation, and told me it should really be above 70, and ideally 100, for it to be optimum and for me to be feeling much better.

All in all, from what you've said, I just think you're teetering on a precipice. All of your symptoms could be down to something else, and that's how subclinical hypothyroidism is left to worsen in the vast majority of cases. GPs and our own selves just sit and wait until our thyroid goes completely kaput, and then we try to shut the stable door.

My best advice is to: get more tests done and address any vitamin or mineral deficiencies (full TFT, full blood count, B12, folate, serum C reactive protein, TPO / TPa antibodies, vit D). Try going gluten free for 3 months and see if your feel different. Reapproach your doctor and explain that you want your TSH levels to be in a better place, seeing as you're TTC (apologies if you've already had that convo and got nowhere - keep pushing).

Supplements I really like and that have made a difference to me are myo-inositol, chelated magnesium, a high dose vitamin C supplement that also has probiotics and selenium in it, Saccharomyces boulardii, and a high dose D3 + K2 spray.

Also rest, eat well, and be kind to yourself. Accept that your body is not all that well right now and that your mental health symptoms, along with your fatigue, are big indicators of that - it needs compassion from you because it's trying really hard to keep up. Once you conceive it's going to need more help than before.

Hugely sorry for the essay. I hope at least a bit of it is helpful! ❤️

You are so kind and thank you for taking the time to type all this out for me.

Yes my gut and IBS have been getting worse over last 10 years, particularly the last 5 I’d say where I think I’m developing lactose sensitivity.

I’ll definitely ask for all those tests.

I did have Serum C reactive protein level tested and it’s 1, unsure what it really means to be honest!

@Holmcross Serum CRP is a protein released by your liver. It rises when there is inflammation in your body, so they always check it when looking for autoimmune issues. Your result is low so that's good (mine was 6 when things were at their worst).

@Lotsofworries Thanks!

So I had my doctors this morning. She said my blood results generally looked fine from last time, she had a quick scan, I briefly talked about the symptoms I’ve been having over last few years (brain fog, memory, poor concentration, increased gut issues/IBS etc), she said based on my TSH being 4.16 they wouldn’t treat it with medication based just on that. I also mentioned my lower (but within threshold) ferritin etc tests from a few years ago and I had to take supplements for low folate.

However she said with TTC she is going to reorder the bloods, folate etc - have attached screenshot. I asked for the TSH antibodies one but I’m not sure if that’s included within the list or if it comes under the
Any idea?

She didn’t seem to have much expertise on thyroid issues as a GP but said given TTC when results are back she will check it with a gyno for advice. She said usually we wouldn’t order these tests just when starting to TTC it would be more at fertility clinics down the line if there are problems/can’t conceive, though she’s happy to do it because of the levels I’ve had in past.

Im not sure if those photos have come through properly!

That's really positive @Holmcross. Sounds like a standard GP reaction to subclinical hypothyroidism - they never want to do anything proactive at this point, so the fact that she has ordered all those tests is great.

The antibodies test isn't on there but I'm not surprised if she wasn't very knowledgeable about hypothyroidism, it's definitely a niche request! Maybe ask for it next time if you want to dig further, the proper name for it is a thyroid peroxidase antibodies test. The acronym used varies, mostly "TPO", sometimes "TPa" or "TPOAb".

Let us know how you get on with your tests. You're pretty much me 10 years ago, in terms of TTC and symptoms and results, and if I can use my experiences to help you then I would love to 😊

@Holmcross
The antibodies would help find the cause of your hypothyroidism - whether it is an autoimmune condition (Hashimoto) or perhaps caused by low iodine levels. The treatment is different, too, as Hashimoto patients do not need extra Iodine if they get L-Thyroxine medication. However, the baby needs Iodine for development. That's why it's good that your GP will consult with a gynecologist (if no luck, try another way to get good treatment), because the needs of mother and baby might differ and they need to find a balance.

Another point to keep in mind is that if you get medication, usually the medication starts with a lower than necessary dose (say you need 100 micrograms L-Thyroxine, you'd still start with 25-50) so that the body can adapt to it - and it will take at least some weeks, if not longer, to reach the dose you need - with blood tests in between, to see how it's working. If you start with a high dose from zero, you can get heart problems and other side effects, it's like going from skateboard to high-speed train.

Here's some more information about pregancy and also the brain fog aspect.
https://www.verywellhealth.com/hypothyroidism-treatments-3233290#toc-during-pregnancy

https://www.verywellhealth.com/do-thyroid-disorders-cause-forgetfulness-98837

https://www.verywellhealth.com/hypothyroidism-genetic-5323760

@Holmcross can you afford to see an endocrinologist privately. Probably £300 for consultation and follow up consultation and £500ish for full bloods. (Take your results from what the GP is doing to save some money).

An endocrinologist will advise what you need, copying your GP so they can pick up from there.

@Lotsofworries Thank you, I’ll ask if they can add on to the blood test script as will get them this week.

I’ve been taking vitamin D for the past month (and folic acid) so annoying that those will look better than they would naturally!

@Lotsofworries and I will let you know how it goes, thank you!

@ConstructionTime thank you that explanation is really helpful.

The GP was pretty clear that I don’t have hypothyroidism since my TSH is within normal range at 4.16 so I’m not sure how far I’ll get!

That is really tricky. Maybe you can get through to them with the pregnancy aspect, as it would be very helpful to know the cause or whether it's just temporarily higher or actual hypothyroidism with regard to the baby. But the results from few years ago as mentioned in your OP show already a history. Maybe that will work better with talking to the gyno.

One other aspect is that the next investigation step after checking for high antibodies could be an appointment at radiology for a scan of the thyroid (at least that's so in the country I live in, could be different in UK). I don't think you can do that while pregnant.

The values which are set as upper TSH-levels also vary between countries and between specialists. Some family members have Hashimoto, and at their GP lab the upper TSH-level is 4 but at the lab for radiology the upper limit is 2.5.

https://thyroiduk.org/ might have more detailed information, too.

@ConstructionTime thanks! I’m not pregnant yet but just TTC and I don’t know it this could cause problems with conceiving (or potentially miscarriages or issues with development). I guess if I did get pregnant successfully would need to push for semi regular TSH tests during pregnancy to see if they are raised to even higher levels.

Thanks for info about scan too. Strange that the levels are so different.

I still don’t really understand that if you’re diagnosed as having hypothyroidism and on Thyroxine the NICE guidance is that if TTC the TSH level should be under 2.5 but not for anyone above that level but not diagnosed with hypothyroidism….

@Holmcross Yes, I understood that you are TTC, perhaps I worded it confusingly.
I mean to say that apart from the fact you wished to have a TSH under 2.5 in the first place, the investigations into whether you have an underactive thyroid (with or without Hashimoto's) and a possible introduction of medication are all easier done before becoming pregnant, if possible, which is why I mentioned the timeline for introducing L-Thyroxine.

I think the connection to pregnancy is that it reduces risk of miscarriages and that the baby needs thyroid hormones, too.

i have some blood tests back now so thought I’d update, and to@Lotsofworries as you were so kind!

As I said they didn’t put the antibodies test on annoyingly.

My vitamin D is 38 which a GP (not one I usually see) said “Your vitamin D levels are adequate, but could be better. Please ensure you are getting a good amount of sun exposure safely or consider some over the counter supplements.”
The normal range 50-74 so it doesn’t seem adequate! Particularly as I have already been taking daily supplements of 10 micrograms for 4 weeks before test so what was it before?! (I assume doctor didn’t see on record that I have already been taking)

My TSH was 5.55, and my Serum free T4 level was 18.3 so middle of normal.
GP on duty emailed “Your recent blood tests show that your TSH is higher than normal, but that your thyroxine level is normal. This is known as subclinical hypothyroidism. You require a repeat thyroid test in 8-12 weeks time, I have printed off the blood form or you to collect AND added on the TPO antibodies that you discussed with Dr X”

My B12 was good, 615.

Thank you for this reply too, sorry didn’t reply at time!

Any advice? I’m not sure whether I should push to get the antibodies now even if I repeat them all in 2 months. And I don’t know how hard to push on medication given my TSH result..

The GP has spoken to an endocrinologist who asked them to prescribe 50mcg of levothyroxine and then we will review bloods in about 8-10 weeks so I’m really pleased! I won’t start properly TTC until that TSH has come down, I think. How long have others found that takes?

She also recommended I take a 25 mcg vitamin D for 2-3 months to improve my levels as were low. Any recommendations for a specific one please let me know otherwise I assume just a standard one from Boots would be fine?

Hi OP, just saw your thread.
I have Hashimotos so wasn't in your subclinical position, BUT
the advice I got from a very senior endocrinologist at UCLH was
not to TTC until my TSH was 0.5-1 - that's what he called the "conception
sweet spot". Under 2.5 is the level for general health, for TTC it's lower.
He said that higher levels would definitely result in higher chances of
infertility and pregnancy loss.
So in your shoes I'd have that in your head as the magic number
and like a PP said, pay to see an endocrinologist if you can so that
they can write a letter to your GP with those numbers in and a suggested
dose of Levo - I take 150mcg as my maintenance dose now I'm no longer TTC
now, but when pregnant I needed more, think it was over 200 at one point!
Best of luck to you x

Hi, thanks so much for your reply.

That’s really interesting about the level advised 0.5-1 for conception thank you. Most places online seem to say between 1-2, or under 2.5, and then around 3 or under as normal generally.

What was your TSH level before medication if you don’t mind me asking?

I am not typical - mine was 40 at one point! And then dropped to 12, 8, then finally controlled at 0.8.

I was diagnosed after having DS1, then we chose to wait 2 years for the medication to get my levels down before TTC, but then DS2 was conceived in the first month of trying, even though I was nearly 40 by then.

We were very lucky basically, but I am also really glad that we got the good advice from the endo on record so that I never had to argue my case with the GPs, it was all on file from the specialist and they just kept upping my dose and ordering more bloods in 6 weeks time...

Wish you all the best

That is high! Thanks that’s helpful :) mine is low in comparison I guess!