Probably not thyroid related but I'm desperate

[Cece_flower]

I don't know if this has anything to do with thyroid, but I don't know where else to post or what direction to go into for help - for 3years I have had a constant low grade fever of about 99.5F. Initially thought it was linked to chronic headaches I was having at the same time but recently using a nasal moistening spray seems to have helped them after many other things failed. My temperature has recently started to creep up to just over 100F in some mornings now. This is a big worry to me and the GPs are just dismissing other than lots of blood tests that come out normal so they leave me to it. Even just being pointed in direction of a more relevant forum would be helpful, this is impacting my life and mental health hugely now.

[SlowDragon Administrator]

Looking at previous posts, are you on levothyroxine?

How much and which brand

Do you always get same brand levothyroxine at each prescription

Have you had thyroid antibodies tested?

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.

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

Low vitamin levels are extremely common, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis) diagnosed by high 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.

In U.K. medics never call it Hashimoto’s, just autoimmune thyroid disease (and they usually ignore the autoimmune aspect)

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

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

Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins

List of private testing options

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test

bluehorizonbloodtests.co.uk...

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code

thyroiduk.org/getting-a-dia...

monitormyhealth.org.uk/

NHS easy postal kit vitamin D test £29 via

vitamindtest.org.uk

[Cece_flower in reply to SlowDragon]

Thank you so much for that information. I've never even heard of some of those thyroid tests! I actually stopped my levothyroxine out of desperation about 4days ago and my temperature seems to have dropped somewhat. Can't see why so probably a coincidence. I'll look into all those and get onto all those tests.

The brand is accord, 100mcg, and it's always been that one as far back as I can remember.

I did a blue horizon test some years ago, don't know if I can find the results anymore though. Antibodies were OK back then. That was before current issues though. My mother has Hashimotos, my great grandmother had goitre but I've not got goitre or tender thyroid gland.

[SlowDragon Administrator in reply to Cece_flower]

No point testing until been on constant unchanging dose and brand of levothyroxine for 6-8 weeks

Stopping levothyroxine for 4 days will alter results, unless you add back in the missing doses over next few days

Suggest you get vitamin D tested now

Or test vitamin D, folate, ferritin and B12 now

Come back with new post once you get results

[Cece_flower in reply to SlowDragon]

I had ferritin etc tested on your advice the other week. So should I start back on thyroxine then do the tests you recommended?

Where on earth would a low fever come into any of it though I've not a clue.

.

[SlowDragon Administrator in reply to Cece_flower]

Will flag these iron and ferritin results up for humanbean or SeasideSusie to comment on

Look at increasing iron rich foods in diet

[Cece_flower in reply to SlowDragon]

Ok, thank you for all your advice. I will do, I have known for long time I need to eat better.

[SeasideSusie Remembering in reply to Cece_flower]

Cece_flower

Optimal iron panel levels according to rt3-adrenals.org/Iron_test_... are:

Serum iron: 55 to 70% of the range, higher end for men - yours is 37.18% so on the lowish side

Saturation: optimal is 35 to 45%, higher end for men - yours is 29.91% so a tad low

Total Iron Binding Capacity (TIBC): Low in range indicates lack of capacity for additional iron, High in range indicates body's need for supplemental iron - yours is on the lower side of the range, approx 1/4 of the way through

Ferritin: Low level virtually always indicates need for iron supplementation; High level with low serum iron/low saturation indicates inflammation or infection; High level with high serum iron and low TIBC indicates excess iron; Over range with saturation above 45% suggests hemochromatosis.

Your ferritin level isn't dire but could be better. Some experts say that the optimal ferritin level for thyroid function is 90-110ug/L.

Personally, I wouldn't suggest iron tablets at this stage but would try to raise my levels through diet. You can help raise your level by eating liver regularly, maximum 200g per week due to it's high Vit A content, also liver pate, black pudding, and including lots of iron rich foods in your diet

bda.uk.com/resource/iron-ri...

everydayhealth.com/pictures...

apjcn.nhri.org.tw/server/in...

It takes a long time to raise ferritin so if you can stick to eating liver, etc, weekly then maybe retest in a few months - no earlier than 3 months but maybe longer to see a difference. If your levels haven't improved much by then you could possibly look at taking some form of iron supplement but I can't advise on that as iron is so complicated.

[Cece_flower in reply to SeasideSusie]

Wow, so much to take in. I have started to add tuna, salmon and sardines into my diet very recently (after the recent iron blood test) as I don't eat red meat, or much of any meat. I'd definitely prefer to avoid supplements. Thank you for your help

[SlowDragon Administrator in reply to Cece_flower]

High percentage of autoimmune thyroid disease in N Europe is Ord’s thyroiditis where thyroid shrinks and shrivels up

en.wikipedia.org/wiki/Ord%2...

ada.com/conditions/thyroidi...

As your Mum and Grandma have autoimmune thyroid disease it’s virtually guaranteed your thyroid disease is also autoimmune

Low vitamin D, folate and B12 very common

Confirming autoimmune thyroid disease with thyroid antibodies test and/or ultrasound scan of thyroid

20% of autoimmune thyroid patients never have raised antibodies…..scan can diagnose in these cases

5% of autoimmune thyroid patients are coeliac, but approx further 80% find strictly gluten free diet helps or is essential

You should have coeliac blood test via GP done BEFORE considering trial on strictly gluten free diet

Come back with new post once you get results

[Cece_flower in reply to SlowDragon]

I'd never even heard of Ords. I'll have a look into it, and definitely bring all this up with my gp as she's as baffled as I am with it all. She's the only one that's tried to help but I think she has no clue what direction to go. She mentioned a lupus test a while ago.

[SlowDragon Administrator in reply to Cece_flower]

About 90% of primary hypothyroidism is autoimmune thyroid disease

Probably the Majority is Ord’s

There’s approx 2 million people in U.K. on levothyroxine ……at least 50% ….probably more will be Hashimoto’s or Ord’s……so it’s definitely NOT rare

U.K. medics only every call it autoimmune thyroid disease, and ignore the autoimmune aspect completely

They just treat subsequent hypothyroidism

But there’s masses we the patients can do to manage the condition better

Maintain optimal vitamin levels

Trial strictly gluten free diet and/or dairy free diet

Fine tune levothyroxine dose and brand

[Cece_flower in reply to SlowDragon]

I can't see it being Ord's tbh as i can't see anything about low grade fever with it. I'll still be looking at everything you've posted though. I'm pretty much gluten free already, but not 100% - I'll sneak a random piece of pizza sometimes or a biscuit here and there.

[SlowDragon Administrator in reply to Cece_flower]

Takes 4-6 months for the gut to recover from eating gluten ….you can get Gluten free biscuits, cakes, pizza etc

Come back with new post once you get vitamin results

And thyroid results after 6-8 weeks on constant unchanging dose levothyroxine

Which brand of levothyroxine are you currently taking

Poor temperature control (too cold or too hot) can be issue with autoimmune thyroid disease

[Cece_flower in reply to SlowDragon]

Oh ok, so I'm messing it up a bit not being consistent. I'm on accord, always have been. I will restart them tonight. Thank you for all your help.

[tattybogle]

Well the most obvious relationship with 'raised temperature' is level of thyroid hormone replacement being slightly to high.Overmedication has similar symptoms to hyperthyroid, of which raised body temperature is one.

overmedication can lead to feeling too hot (and having headaches)

undermedication can lead to feeling too cold, (and still having headaches )

4 days without any Levo is long enough to feel a difference in thyroid hormone Levels, so it is possible that the fact you feel cooler now is related to your daily dose being a tad to high for you.

But it's not at all conclusive , symptoms of slight over and under medication are notoriously difficult to tell apart.

When stopping Levo totally (not advised ).. all sorts of odd things can be felt .. so you really need to look at blood tests on the dose you were on , alongside any changes in symptoms .

[Cece_flower in reply to tattybogle]

My thyroid blood tests over the several yrs I've had this ongoing low grade fever haven't been showing high levels though. I don't know if it's worthwhile without T3 but I've requested my thyroid blood test results for the last 3years. My regular gp is on annual leave atm so I can't discuss this with her. Quite frankly I'm very concerned she's not going to bother with any of this new info because she doesn't know what to do with it. Wondering if I should go straight to a private endocrinologist. Seems bit of coincidence with stopping levothyroxine. I'm basically having to investigate myself.

[tattybogle in reply to Cece_flower]

getting hold of them will still be informative , even without fT3 results.Unless fT4 was high in range /over range. and TSH was low in range /under range, then overmedication is unlikely to be the cause of temp rising.

To be honest . private endo route is probably just money down the drain at this point .. better idea at the moment to spent more time and less money on improving your own knowledge/understanding , and getting full private blood testing done for TSH /fT4 /fT3 / ferritin/ folate /Vit D /vit B12, and seeing what pointers the (free )experts on here can give you when they see those results.

[tattybogle in reply to tattybogle]

You should restart Levo though .. going off it completely will just confuse the picture of what's going on, and at some point (probably all of a sudden, after a period of feeling better ) will probably make you feel really dreadful.

[Cece_flower in reply to tattybogle]

My results two tests, two months apart were odd in that they had April '21 TSH 2.25 and T4 13 but then June '21 TSH 0.75 and T4 14.8.But yes, I agree private is pointless atm. I will get those tests sorted out but don't know if I should restart thyroxine first.....

[tattybogle in reply to Cece_flower]

That drop in TSH could be related to getting hotter. But not necessarily , can u remember if both test were same time of day ?

TSH is always highest early morning . falling to lowest in early afternoon .

[Cece_flower in reply to tattybogle]

I usually go morning tests. But I always forget to not take levo 24hrs before. I will do the blue horizon advanced thyroid as it encompasses all needed and necessary ones. How long should I do it after restarting my levo?

[tattybogle in reply to Cece_flower]

Do you know what the lab range is for the fT4 test ? usually in brackets after result.

[tattybogle in reply to Cece_flower]

Since you've missed 4 days of Levo..... that has messed things up a bit for accurate testing . Not sure what others will think is best here , but my opinion:

under the circumstances , I'd say you must leave AT LEAST three weeks after starting back on 100mcg , otherwise the fT4 level will not have had time to build back up again.

And unfortunately , if 4 days off was enough to make your TSH rise, then even 3 weeks might not be long enough to correct the TSH to show level it usually is on 100mcg . There's no way to know how much (if at all) your TSH level has gone up due to 4 days off.

To be absolutely certain that thyroid tests are accurate we need 6 weeks on constant unchanged dose , because TSH is slower to respond to changes in dose than fT4 is., and because T4 has a long half life of approx 7 days.