TSH levels

[BubbleMonkey]

Hi guys. Just wanted to get some quick thoughts. I will be seeing my doctor obviously, but it's going to be a while till I get an appointment and I'd like to have an idea how it will go.

I am taking levothyroxine for hypo and it's been a couple of years now fiddling with dose. In that time I've also been diagnosed with another AI condition and I suspect another one is lurking (that or my last diagnosis was a bit off). Bloods have just been done including thyroid cos I'm due for it and hyper would match some of the symptoms I'm getting (although I don't think it actually fits).

Anyway my tests came back TSH level 0.35 mIU/L which appears to be within normal range so am I safe to assume that thyroid is not a likely culprit for issues I am experiencing?

Doctors notes say no action required and it appears in range from what I can tell so I think I already know the answer, but I want to be prepared cos I'm kinda pushing for investigations for what I expect is causing stuff and I don't want to be blind sided and delayed by an off thyroid result. Just want a bit of confirmation so I don't spend the next week or so worrying for no reason.

TL;DR is TSH 0.35 normal or would it be likely to cause symptoms of hyper?

Thanks

[Jazzw]

Well, TSH isn’t really a whole lot of help when it comes to trying to decide if you’re on a sufficient dose of levothyroxine. Ideally, you need an FT4 result, and even more ideally, an FT3 result.

Plus if you’ve been hypothyroid for a while, it’s likely you have low B12, low ferritin, low Vit D and low folate - one or all of those!

How much levothyroxine are you currently taking? With a TSH of 0.35 it’s unlikely you’re overmedicated. Underactive symptoms can be very similar to overmedicated.

What symptoms are you experiencing?

[BubbleMonkey in reply to Jazzw]

Hi. Thanks for responding. It's nice to be able to talk through all this a bit.

I'm already on supplements for B12, D and ferrous sulphate and all appear to be in range from my recent tests. I also know I have had a mild deficiency of folic acid before, but I was taken off that medication, I believe after a blood test.

My symptoms include joint aches/ pains (the main foundation of my rheumatism diagnosis), occasional side/ back pains, fatigue, some sort of skin issues including redness and what presents as mild eczema, itchy/ stinging hands on and off, greying hair, some form of dizzy/ uneasy feeling on and off, something akin to hot flushes, sensitivity to heat/ sun/ light, some sort of visual disturbance (made worse by light).

Although I'm aware a lot of these could be related to thyroid I don't buy it in my case. They were never an issue until recently while my thyroid has been up and down for years now. Even the fatigue (the one common symptom) is somehow different this time around.

These symptoms all started around the same time which led to my rheumatism diagnosis, but some of them were only just starting up so didn't really come into things and I now suspect that it's actually a different AI condition starting up and settling in.

[Jazzw in reply to BubbleMonkey]

Could be. Hope not, but autoimmune diseases do seem to hunt in packs...

You mentioned that your vitamin and mineral levels were in range. Often, “in range” is a long way from optimal. Were they high in their ranges? B12 deficiency symptoms (some of which are ones you describe) can appear as levels fall below 500 (per the serum B12 test). And falling vitamin and mineral levels seem to be a feature of hypothyroidism, even when on paper it appears well medicated.

[BubbleMonkey in reply to Jazzw]

I think the ferrous levels were on the low end. I guess I'll ask my doc if I should be on a higher dose of anything. Can't exactly hurt to make sure I'm on the high end of everything.

[Jazzw in reply to BubbleMonkey]

I’d recommend getting a copy of your blood test results and posting them here for comment. I’m afraid that some doctors aren’t as knowledgeable as you might expect about vitamin and mineral levels, so you may well be told they’re “fine” when they really aren’t.

[BubbleMonkey in reply to Jazzw]

Serum vitamin B12 level 645 ng/L [197.0 - 771.0]

Serum ferritin level 12 ug/L [13.0 - 150.0]

Serum folate level > 20.0 ug/L

Vitamin D wasn't done, but I'm on a pretty high dose so I doubt that's an issue anyway.

[Highland49 in reply to BubbleMonkey]

As you've been supplementing with b12, you can't let obtain an accurate result but it is possibly still low for someone who has been supplementing. The optimum is 1000+ especially as you are hypo.

Your aches and pains may still be caused by vitamin D deficiency. The level should be 125+ and ideally 250 with thyroid problems. Vitamin D should be taken in softgel form as it's fat soluble and to ensure that it is absorbed by your bones and not soft tissues and arteries, you need to take k2 alongside plus magnesium to help absorption. Unfortunately, GPs know little about nutrition and the correct use of supplements.

With your folate being that low, your body will struggle to use the b12.

[Mermaid238 in reply to Highland49]

I am nervous about taking Vit K I had strokes and I am on Asprin to make sure I dont clot - any info please

[Angel_of_the_North in reply to Mermaid238]

It's not vitamin K1 - the one that affects blood clotting, but vitamin K2 that you need - it discourages calcification of the arteries so should actually help with stroke and CVD, and you don't need a high dose. Don't expect a GP to know anything about vitamins, though.

[Mermaid238 in reply to Angel_of_the_North]

Thank you - I know they don't they more than likely will kill us if we don't take care of oursleves

[BubbleMonkey in reply to Highland49]

I'll talk to my GP about a higher dose of B12 and ferrous sulphate. I don't think my Vitamin D will be an issue though. That was one of my first issues and I saw a consultant for it. I'm on 3,200ui each day and my levels have been tested multiple times since. GPs would have put me on a maintenance dose by now, but have been told this dose is permanent by consultant. That's about the one thing I'm completely confident with.

[Highland49 in reply to BubbleMonkey]

There's a good Facebook page, Vitamin D Truth + More that lists good quality vitamin D, minus the fillers that are often present in prescribed vitamin D. It's good that the consultant has prescribed vitamin D but they won't be aware of the need for k2 and magnesium.

Regarding the b12, do you have your blood result from before you started supplementing? If you have an absorption problem, you would need injections, not tablets. Unfortunately, you would need to be off supplements for at least 4 months before checking for pernicious anaemia and to get an accurate reading.

Have they referred you to ENT about your dizziness? When I was low in b12 and only on supplements which didn't get to cell level, my main symptom was balance problems and a swimming head, like I'd come off a roundabout.

[BubbleMonkey in reply to Highland49]

Thanks. I don't suppose there's any sort of multivitamin that will give me all the things I need to help absorption?

Haven't seen anybody about dizziness yet (it's not quite dizziness actually- it's some odd feeling like it though). It's a pretty new thing so I've only just started discussing it with doctors.

I currently suspect that lupus or something similar is the cause cos it matches all my issues and the timeline. I want to be sure I've ruled out everything I can though cos lupus isn't an easy thing to diagnose. Also even if it is lupus I don't want anything else contributing.

[Highland49 in reply to BubbleMonkey]

I find it so hard to know what symptom is definitely related to which disease. I read that being hypo can give you dizziness and feeling of being lightheaded but b12 can too.

Hopefully your GP is on the ball with checking out lupus and referring you to the right consultant. Perhaps someone on HealthUnlocked has experience and could recommend a consultant in your area? Too many endocrinologist seem to specialise in diabetes. I know very little about lupus, what specialist would you see? I hope you can quickly either get a diagnosis or rule it out.

If you take a multi vitamin, they won't have the right doses of each vitamin and mineral that you need so always best to take separately. Having said that, I like to take a multi once a week just to make sure I'm having all my b vitamins to help with absorption.

When I realised I needed b12, the methyl version made my balance worse so it was suggested by the B12d charity that I tried hydroxocobalamin which is used in the injections. This really helped and now I self inject every other day. Sublingual tablets are better for absorption but if you have pernicious anaemia, you need injections. A lot of people on a b12 Facebook group New Beginnings recommend the Solgar or Jarrow b12 methyl sublingual tablets.

[Highland49 in reply to BubbleMonkey]

Are you taking vitamin c with your ferrous sulphate to help absorption? Your ferritin must have been extremely low if it's now only 12 after supplementing. Ferrous glycinate is a good form that is easy on the stomach.

[BubbleMonkey in reply to Highland49]

Okay you seem to have a pretty good idea of all this stuff. Why would my ferretin levels go down from 18 may2017 to 12 just recently with me on ferrous sulphate supplements?

[Highland49 in reply to BubbleMonkey]

Your body may have been using the ferritin to help absorb the b12 and folate as all three are needed together to work together. When you first supplement with b12, firstly knowing your iron, ferritin and folate are important and then the levels can be raised with supplements to ensure good absorption. The optimum for ferritin is 80 so unfortunately you have a long way to go. I wonder if your vitamin D supplements have used up your ferritin but I've no idea if vitamin D works in this way?

Are you a lady who has heavy periods?! That can regularly make you anaemic. I didn't realise until recently that heavy long periods can mean hypo, whereas short periods are overactive thyroid. If only GPs realised this instead of suggesting IUDs for heavy periods, which they receive financial bonuses for.

[BubbleMonkey in reply to Highland49]

Okay so definitely need to talk about more ferrous sulphate then.

I don't actually have periods any more- been on contraceptives to stop them since early on cos of pain and irregularity.

I think I'll have more of a look into all this vitamin stuff too. Right now though I'm prioritising all my energy on working out if I have lupus or not. Also don't want to overdo it with my GP and end up with nothing.

[BubbleMonkey]

That's what I've been thinking. I hate to do the whole looking online and deciding on a condition thing, but it would seem to fit.

I'll talk to my GP about increasing the ferritin.

[FancyPants54]

You've just written a description of menopause, i.e. oestrogen loss. Could this be your issue? If there is a possibility of it, talk to your doctor about that too.

[BubbleMonkey in reply to FancyPants54]

I very much hope not since I'm in my early 20s.

[FancyPants54 in reply to BubbleMonkey]

One hormone goes out of line and others often follow. It may not be menopause, but it could be hormonal imbalance. I'd ask your doctor if he can test your sex hormones for you to rule out imbalance. Check to make sure he knows what day of the month they have to be taken on.

[Eddie83]

TSH doesn't tell you all you need to know. First, 0.35 is not hyper; mine is 0.2 and I am very well. Second, TSH does not tell you where your FT3 is; sufficient T3 is what makes you feel well. Third, blood tests like TSH and FT3 don't tell you if your tissue levels of thyroid are sufficient.

[BubbleMonkey in reply to Eddie83]

So if I wanted to properly rule out my thyroid I'd need a FT3 test?

[Eddie83 in reply to BubbleMonkey]

FT3 is one of many things you need to check. For instance, adrenal function is another thing - adrenal fatigue can prevent you from getting good results from thyroid treatment.

[Eddie83 in reply to BubbleMonkey]

P.S. - many members of this and other thyroid forums will tell you that getting your FT3 at least 50% up in the normal range (and many suggest 75%) is important to feeling well.

[Marz]

Do you have Hashiotos ? Are you able to have tests done privately to ensure you get the correct tests ?

[BubbleMonkey in reply to Marz]

I have antibodies so I'm assuming that means hashis (never actually been told specifically by a dr). I'm looking into going back to my consultant and asking for all the FTs and stuff that people are suggesting needs doing.

[Marz in reply to BubbleMonkey]

TSH - FT4 - FT3 & the anti-bodies are TPO & Tg. Rarely tested in the NHS but both need doing - hence my suggestion you had private testing. Hashimotos could be the cause of many of your symptoms. Have you read up on it ? Check out Izabella Wentz. Being gluten free could help too.

thyroiduk.org

[BubbleMonkey in reply to Marz]

I have had testing through a private consultant when I first started getting hints of being unwell which confirmed antibodies. I believe that is what makes it hashis right? That's something I've had for a long time now (at least 5 years I think). More recently I've developed other symptoms which led to me seeing a rheumy and getting a rheumatism diagnosis, but changes to those symptoms mean that diagnosis no longer fits and I'm left wondering again what on earth is causing this stuff. RA has been ruled out my ultrasound and I'm awaiting ANA results which the consultant expects to rule out lupus.

I also believe I've had the classic GP tests for diabetes etc.

I didn't think it would make sense for my existing thyroid condition to suddenly start producing different symptoms, especially seeing as it's been relatively stable for years now. It's at least something I'll be looking into as a general check up/ potential contributor though. Especially given the current dead end I have reached.

I'll be trying to see that first private consultant again and request the full lot of thyroid stuff be tested (along with various vitamins since they seem out of whack too). I'm expecting that will be possible.

[Marz in reply to BubbleMonkey]

With Hashimotos the various conditions can keep appearing and ebbing and flowing. So if you know you have Hashi's then why not focus on healing the gut to reduce the anti-bodies and find wellness. Also you may well absorb the Iron better. How much Levo/T4 are you taking ?

Have you checked out Isabella Wentz ?

How do you know your thyroid has been stable for the last few years if they only test the Pituitary Hormone TSH ? Without the FT4 and FT3 it is impossible to know.

[BubbleMonkey in reply to Marz]

Honestly I'm reluctant to make any significant changes to my diet cos it's hard enough for me to feed myself appropriately as it is. I also don't appear to react to any types of foods which would mean I'd be starting on ground 0. Although I imagine that altering my diet could have a positive impact on my health and how I feel I think that at the moment it would be more challenging for me than it's worth so the gut side of things isn't something I'm looking into for now at least. That may well change in the future, but not right now.

No I haven't. I may look into her later.

When I say stable I mean how I've been feeling along with whatever tests I have been getting from GP. I've not experienced any symptoms like this in the years since my diagnosis or the time leading up to it and a bunch of symptoms some of which would not be explainable by thyroid all started at the same time. Even the type of fatigue I'm experiencing now feels different to before. That's why I suspect the thyroid issues are not the main issue (although they may well be contributing).