Can someone please have a look at my levels?

[Tiredtoday]

Dear All,

I have lurked a little but I was wondering if I may ask someone more knowledgeable to have a look at my blood results and let me know what they think, please?

I was diagnosed with an underachieve thyroid in mid 2022. I had asked for bloods as I was worried about hormone issues (very very heavy periods, long and unpredictable cycles) I took medication for it, but it never really sorted out the problem and tbh I didn't refill the prescription when my life got very busy (probably the end of 2023). I do not think I was on a high enough dose of levo - only 50 a day. I do not have access to my old results on the ap, but I remember the GP (phone consult) said my TSH levels were only just above normal at 5. something, so they wouldn't increase the dose.

I had a significant and very unexpected and traumatic close bereavement in the summer of 2024, and the wheels started to fall off the cart. I gave it a few months, as I assumed it was 'just' grief. But by the autumn I was very depressed and tearful all the time, no interest or enthusiasm for anything, absolutely and completely exhausted every day but trouble sleeping/insomnia. My hair was falling out. I was dizzy, lightheaded, POTS, tingly fingers and wrists, I have had raynauld's for a few years but it was much worse. I was constantly freezing. My short term memory and ability to concentrate was shot. The period issues were much the same- I was pretty much housebound for at least a day, if not two due to the heavy flooding.

I had a telephone consult with the GP and said I thought there must be something wrong. They agreed to do bloods. These were the results for November 24:

Haemoglobin estimation: 115g/L

Serum Ferritin: 5ug/L

Serum Folate: 2.9 ug/L

Serum Vitamin B12: 292ng/L

TSH: 12.7mu/L

Serum free T4 level: 12.3 pmol

I was put on 50mg levothyroxine again. The GP offered iron tablets but I have been given them previously and know they gave me a lot of abdominal issues, and took months and months to make any difference to my numbers so decided, as I was drowning in feeling so ill that I was unable to function normally, that I wasn't prepared to go down that route again.

He also conceded to give me tranexamic acid to see if that could help with the periods (I had been refused in 2022, and told I could only go on the pill, there was nothing else they could do). It has helped a bit.

I went privately to get an iron infusion in mid December. I had 1200mg of monofer. As my b12 levels were on the lower side of normal, the Dr asked if I had ever been tested to find out if the thyroid was autoimmune. I hadn't. He said that autoimmune conditions often come in groups and it cold be that my b12 wasn't optimal because I wasn't absorbing it properly due to another autoimmune issue. I was tested and came back positive for hashimotos and parietal cell antibodies. I have been, under his instructions, self injection b12 since then.

My symptoms did improve quite a lot within the first few weeks after the infusion. It is difficult as both the thyroid, low ferritin//folate and b12 all have overlapping symptoms. However, from the middle/end of February the POTS has definitely come back, with the exhaustion (although not as extreme) and some lightheadedness. My mood has dipped again, but it is not as bad as before.

I had the follow up bloods at the end of last week and the results this morning.

Ferritin: 113ug/L (range 10-291)

Serum Folate: 8.9 ug/L (3.4-12.2)

Serum total 25-OH vit D : 100nmol (no range)

Vitamin B12: >2000 (291-911)

TSH: 4.5 mu/L (4.78-0.55)

Free T4: 15.4pmol/L (9.5 —22.7)

The GP has noted all of them as 'normal no action required'. The only note was re the b12 results. I had said to the nurse at the blood tests that I thought guidelines said not to retest once you were on injections as they would be crazy high but she said it was fine, they'd just note I was on them. Anyway they have come back with a ? saying reduce frequency.

I am not convinced re the thyroid results. I thought the BTF said 4 was the upper limit, and I'm sure I'd read elsewhere that when being treated that it should be less than 2.5? But I can't find that anywhere official. Does anyone have a link to anything official that I could show the GP to say, no, it should be lower, I want you to up my levothyroxine? I think I have also read on here that it is better to be higher in the reference range for the T4 when you're being treated? But again I can't see anything on anything official that I can use to provide evidence to the GP.

I'm not convinced with the GPs reference ranges based on the previous experience where he said that my hb was fine when NICE says 120+ and that ferritin of 10+ is fine when NICE say 30+ is the minimum.

So I would be very grateful if anyone could please let me know what they think of the results and if you could point me in the direction of being able to find info.

Thank you!

[tattybogle]

Hi ... regarding the TSH ~ correct, 4 is still to high for optimal treatment on levo

Use these to push for dose increase to 75mcg :

NHS thyroid treatment guidelines : nice.org.uk/guidance/ng145/...

"1.4 Follow-up and monitoring of primary hypothyroidism

Tests for follow-up and monitoring of primary hypothyroidism

1.4.1

Aim to maintain TSH levels within the reference range when treating primary hypothyroidism with levothyroxine. If symptoms persist, consider adjusting the dose of levothyroxine further to achieve optimal wellbeing, but avoid using doses that cause TSH suppression or thyrotoxicosis.

1.4.2

Be aware that the TSH level can take up to 6 months to return to the reference range for people who had a very high TSH level before starting treatment with levothyroxine or a prolonged period of untreated hypothyroidism. Take this into account when adjusting the dose of levothyroxine.

Adults

1.4.3

For adults who are taking levothyroxine for primary hypothyroidism, consider measuring TSH every 3 months until the level has stabilised (2 similar measurements within the reference range 3 months apart), and then once a year.

1.4.4

Consider measuring FT4 as well as TSH for adults who continue to have symptoms of hypothyroidism after starting levothyroxine."

healthunlocked.com/thyroidu.... my-list-of-references-recommending-gps-keep-tsh-lower-in-range

healthunlocked.com/thyroidu... /explanation-of-what-*high-tsh-is-telling-us-when-our-ft4-level-is-normal-on-levothyroxine-the-shoe-size-analogy.-*-over-2.5-3-ish

[Tiredtoday in reply to tattybogle]

Thank you very much for your help and for sharing that info.

[Blue_Lagoon]

I agree, I think you should try and push for an increase to 75mcg. I think TSH is meant to be around 1 when adequately replaced. There is a thyroid patient booklet which you can get from some pharmacies written by Dr Anthony Toft who used to be president of…(perhaps someone can correct me if I’ve got this wrong) … the British Thyroid Foundation, and they wrote some important guidelines at some point I think. Anyway Dr Toft says in this book that doctors should aim to get TSH to around 1 when on thyroxine.

In terms of raising your fT4 to being high in range to feel better, everyone is different. This does work for some patients but for others they suit a lower fT4 level. We are all unique and unfortunately, unless you are very lucky and just happened to have a full thyroid panel done before you developed hypothyroidism and when you were well, you won’t know what fT4 level you are supposed to be aiming for to suit your own body. Which is why it is so important to take symptoms into consideration as well as blood test results when you are raising your levo dose. If you begin to feel worse as your fT4 goes up with each does increase then maybe you are someone who suits a lower level of T4. Or perhaps a different medication entirely… but that’s for another post!

Hope this is helpful!x

[Tiredtoday in reply to Blue_Lagoon]

Thank you too for your help and advice

[SlowDragon Administrator]

TSH: 4.5 mu/L (4.78-0.55)

Free T4: 15.4pmol/L (9.5 —22.7)

The GP has noted all of them as 'normal no action required'.

That’s incorrect

On levothyroxine TSH should ALWAYS be below 2

See GP

List all your hypo symptoms and request “trial “ increase in levothyroxine to 75mcg daily

Which brand of levothyroxine are you currently taking

Don’t change brand while increasing dose

Only change one thing at a time

Guidelines of dose Levo by weight

approx how much do you weigh in kilo

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 somewhere near full replacement dose (typically 1.6mcg levothyroxine per kilo of your weight per day)

cks.nice.org.uk/topics/hypo...

bnf.nice.org.uk/drugs/levot...

nhs.uk/medicines/levothyrox...

Adults usually start with a dose between 50 micrograms and 100 micrograms taken once a day. This may be increased gradually over a few weeks to between 100 micrograms and 200 micrograms taken once a day.

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

TSH should always be below 2 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).

sciencedirect.com/science/a...

The optimal daily dose in overt hypothyroidism is 1·5–1·8 μg per kg of bodyweight, rounded to the nearest 25 μg. I

[Tiredtoday in reply to SlowDragon]

Thank you for your replies and all of your advice.

[SlowDragon Administrator]

As you have B12 injections it’s recommended also to supplement a good quality daily vitamin B complex, one with folate in (not folic acid) may be beneficial.

This can help keep all B vitamins in balance and may help maintain B12 levels between injections

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 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)

[Tiredtoday in reply to SlowDragon]

Sorry I forgot to mention in my original post, the consultant who advised the vitamin b injections also gave me folate tablets to take, 5mg.

I presume they are the reason my folate level has risen.

However, I did not stop the folate tablets in advance of the bloods just taken. I knew about biotin (which I'm not taking so it didn't apply), but not anything else.

Thanks for taking the time to help and advise

[SlowDragon Administrator]

Lastly

Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels

Low vitamin levels affect Thyroid hormone working

Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances.

Most common by far is gluten.

Dairy is second most common.

A trial of strictly gluten free diet is always worth doing

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 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...

Recent research in China into food intolerances with Hashimoto’s

healthunlocked.com/thyroidu...

More interesting Chinese research on Hashimoto’s and leaky gut

nature.com/articles/s41598-...

[Tiredtoday in reply to SlowDragon]

I'll look over the antibodies/autoimmune tests he did. There were a few things on there. I only really paid attention to the thyroid ones and parietal cells, the others were negative so I didn't really pay attention.