Nosebleeds and thyroid / blood test query / going private

[Fweb]

Hi there

You were all so helpful when I was first diagnosed with hypothyroidism last year, and I was hoping I could trouble you all with another question.

- My levothyroxine was raised to 75mg a day in February based on my NHS blood test (TSH 5.91 mU/L, free T4 15.8pmol/L).

- Not really sure if it's linked or not, but since then I've been getting fairly regular nosebleeds, culminating in a 10 day period a couple of weeks ago where I was getting daily, very intense nosebleeds that eventually led me seek help from 111 who booked me in an appointment with my GP last week.

- GP begrudgingly cauterised my nose, but only after I got so frustrated trying to explain why these nosebleeds were concerning to me (he was very much of the 'why are you even here' energy) that my nose starting bleeding in front of him haha. I tried to explain that I'm still experiencing a lot of symptoms I'm assuming are related to my thyroid, and nosebleeds on top of that is really taking it out of me. He said I 'could have some blood tests if you really want' which I asked for.

- Results have come back today, apologies it's quite long:

-- TSH 3.73mU/L (normal)

-- Free T4 14.8pmol/L (normal)

-- Prothrombin time 13.2 seconds (above reference limit)

-- Partial thromboplastin time 34.7 seconds (above reference limit)

-- Erythrocyte sedimentation rate 9mm (normal)

-- HbA1c 31mmol/mol (normal)

-- Serum potassium 4.9 mmol/L (normal)

-- Serum sodium 141 mmol/L (normal)

-- Serum creatinine 54umol/L (normal)

-- eGFR >90mL/min

-- Serum albumin 42g/L (normal)

-- Serum bilirubin 7umol/L (normal)

-- Serum alkaline phosphatase 54 U/L (normal)

-- Serum alanine aminotransferase 24 U/L (normal)

I've had a text from another GP, basically telling me everything is fine other than the clotting time tests but (I quote) "they could just be a red herring". I replied that while I've only had one nosebleed since the cauterisation, I'm still experiencing a lot of other symptoms (tiredness, low mood, constipation, being constantly 'ill' with colds etc and cold sores etc), does this mean my levothyroxine needs to be higher again. The response was that my thyroid is controlled now, but they can retest in 4 weeks "if I want" (I hate this constant thing of me being annoying by 'wanting' help!!!!) which I have booked in for. They also said I should be taking vitamin D (which I already am).

Sorry this is very long but I think this boils down to 3 big qs:

- Has anyone else experienced nosebleeds like this, is is a hypothyroid thing or possibly a levothyroxine side effect thing? I also get heavy periods.

- From what I can tell from reading this forum, my TSH being below 5 does not necessarily mean I'm not underdosed on levothyroxine. Is there a level I should be 'pushing' for?

- Does anyone have any advice on what to go 'armed with' for an endocrinologist appointed? I have decided to go private as I'm at a point I'm so fed up of being dismissed by the GPs - completely get they have a tough job but I'm at a point of accepting they will just not be able to help me, and I just need to throw money at the problem. Hopefully that will be happening in the next few weeks - does anyone have any advice what I should go armed with? I've ordered myself a Monitor My Health kit so I can go prepped with more in detail, up to date blood tests than the NHS ones. But any advice would be great, I don't want to waste the opportunity to maybe feel a bit better.

Sorry this is long and thank you

[SlowDragon Administrator]

TSH 3.73mU/L (normal)

Free T4 14.8pmol/L (normal)

What’s the range on Ft4

Was test done early morning and last dose levothyroxine 24 hours before test

With TSH over 2 you need next dose increase in levothyroxine to 100mcg

Retest 2-3 months later

TSH should be under 2 as an absolute maximum when on levothyroxine

gponline.com/endocrinology-...

Graph showing median TSH in healthy population is 1-1.5

web.archive.org/web/2004060...

Comprehensive list of references for needing LOW TSH on levothyroxine

healthunlocked.com/thyroidu....

onlinelibrary.wiley.com/doi...

If symptoms of hypothyroidism persist despite normalisation of TSH, the dose of levothyroxine can be titrated further to place the TSH in the lower part of the reference range or even slightly below (i.e., TSH: 0.1–2.0 mU/L), but avoiding TSH < 0.1 mU/L. Use of alternate day dosing of different levothyroxine strengths may be needed to achieve this (e.g., 100 mcg for 4 days; 125 mcg for 3 days weekly).

[Fweb in reply to SlowDragon]

Thank you for responding - range for FT4 was 10.5-21.0 pmol/L

Yes I've always booked the tests as early as poss (8:30am). Thank you for all these refs, I'll definitely push for that then after the next test.

[SlowDragon Administrator in reply to Fweb]

Free T4 (fT4) 14.8 pmol/L (10.5 - 21) 

Ft4 only 41.0% through range

So very much in need of next dose increase in levothyroxine

Most people when on adequate dose levothyroxine will have Ft4 at least 60-70% through range minimum

Likely low vitamin levels as direct result of being on too low a dose levothyroxine

is your hypothyroidism autoimmune?

Have you had thyroid antibodies tested

And coeliac blood test too (linked to nose bleeds)

Even if we frequently start on only 50mcg, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or near full replacement dose

pathlabs.rlbuht.nhs.uk/tft_...

Guiding Treatment with Thyroxine:

In the majority of patients 50-100 μg thyroxine can be used as the starting dose. Alterations in dose are achieved by using 25-50 μg increments and adequacy of the new dose can be confirmed by repeat measurement of TSH after 2-3 months.

The majority of patients will be clinically euthyroid with a ‘normal’ TSH and having thyroxine replacement in the range 75-150 μg/day (1.6ug/Kg on average).

The recommended approach is to titrate thyroxine therapy against the TSH concentration whilst assessing clinical well-being. The target is a serum TSH within the reference range.

……The primary target of thyroxine replacement therapy is to make the patient feel well and to achieve a serum TSH that is within the reference range. The corresponding FT4 will be within or slightly above its reference range.

The minimum period to achieve stable concentrations after a change in dose of thyroxine is two months and thyroid function tests should not normally be requested before this period has elapsed.

Some people need a bit less than guidelines, some a bit more

[Fweb in reply to SlowDragon]

Thank you for this! Yes I've been doing my own testing through Monitor My Health too (the 'full one' which includes thyroid plus vit D, folate etc) as all my GP was doing was TSH and FT4, and increased the amount of vit D I'm taking based on. The TPO antibodies on my last test were 600 IU/mL so pretty clear its auto-immune.

Coeliac blood test I haven't had but will look into!

[SlowDragon Administrator]

I've ordered myself a Monitor My Health kit so I can go prepped with more in detail, up to date blood tests than the NHS ones. But any advice would be great, I don't want to waste the opportunity to maybe feel a bit better.

Hopefully this includes testing vitamin D, folate, ferritin and B12

If not cancel and reorder full test

Can see from previous post your hypothyroidism is autoimmune

Did GP do coeliac blood test at diagnosis. If not, ideally get that done BEFORE trialing GF

Only 5% of Hashimoto’s patients test positive for coeliac but a further 81% of Hashimoto’s patients who try gluten free diet find noticeable or significant improvement or find it’s essential

A strictly gluten free diet helps or is essential due to gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and may slowly lower TPO antibodies

While still eating high gluten diet ask GP for coeliac blood test first as per NICE Guidelines

nice.org.uk/guidance/ng20/c...

Or buy a test online, about £20

Assuming test is negative you can immediately go on strictly gluten free diet 

(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially) 

Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse

chriskresser.com/the-gluten...

amymyersmd.com/2018/04/3-re...

thyroidpharmacist.com/artic...

drknews.com/changing-your-d...

Non Coeliac Gluten sensitivity (NCGS) and autoimmune disease

pubmed.ncbi.nlm.nih.gov/296...

The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported

nuclmed.gr/wp/wp-content/up...

In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned

restartmed.com/hashimotos-g...

Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.

Similarly few months later consider trying dairy free too. Approx 50-60% find dairy free beneficial

With loads of vegan dairy alternatives these days it’s not as difficult as in the past

Post discussing gluten

healthunlocked.com/thyroidu...

[Fweb in reply to SlowDragon]

Ah sorry just seen this one too! Yes I've ordered the full MMH test kit

I haven't done the gluten test, but I have been generally trying to reduce gluten/dairy/soy given advice from here before (~4 months, but I have definitely not been perfect with it, I'm vegetarian and sometimes just not been options that avoid!). In that case, maybe I will reintroduce and see how things go, and look into the gluten test in a few months time.

Thank you for all the links, I really appreciate you taking the time to share and lots of reading for me

[SlowDragon Administrator in reply to Fweb]

So if already on low gluten diet, not much point testing for coeliac

Though test is only £20 online

Gluten free diet does need to be absolutely strict gluten free to be effective

[Wua13262348]

This may be totally irrelevant, but have you taken turmeric, curcumin or Vit A, retinol palmitate lately?I believe that both of these have caused bleeding problems for me, one of which was nose bleed . I coughed up blood before the nose bleed.

[Fweb in reply to Wua13262348]

Sorry just seen this... I don't think I have taken any of these other than putting turmeric in curries! And use retinol palmitate in terms of skin care... hmm something else to think about!

[Margo]

I had many nosebleeds when my iron levels were low, once on a decent dose of iron they stopped. I would recommend you have a ferritin test. Good luck

[Fweb in reply to Margo]

Thank you for this - I ended up doing a Monitor My Health home test before I went to my endo appointment, and my ferritin was 33 ug/L (so I guess low for normal). I do take an iron supplement already though, so I guess it should be higher considering that. Definitely another thing to consider, thank you.

[Kimmi01]

hello, I just wanted to say that when I was started on levo at 25mg I had a spate of nosebleeds very much as you described, lasting about 20-30 minutes each time and I asked my gp and then later my endocrinologist consultant if it could be connected with the thyroid in any way, both said no. The gp referred me to ent, eventually ent decided since it was so long since I’d had the last nose bleed that it wasn’t worth cauterising unless it happened again. Luckily it did stop.