Hi guys new here, looking for advice please :) - Thyroid UK

Thyroid UK

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Hi guys new here, looking for advice please :)

Rosie2m profile image
33 Replies

Hi! I’ve been suffering with hand pain, my periods have been significantly reducing my last one lasted only 2days and are becoming further apart when my ‘normal’ periods normally last 4-5days, I keep forgetting basic things, peoples names excetra and am suffering with mood swings and low mood not to mention tiredness, sleep disruption and in the last few days I’ve now starting getting pain in my feet too. I’m currently recovering from Labrynthitus too (could this be linked?) When I first presented with hand pain the gp ordered bloods and the only thing that came back was slightly raised TSH - (7.11) I believe and he said there’s no way that would be the cause and to retest in 6months, after requesting to see a different dr I managed to get one in 3months and apparently the TSH results have come back again slightly raised again all other tests apparently look fine and gp has no note for further action. The receptionist won’t tell me the level and I’m now having to wait until the 2nd December just to have a phone call with the gp. I have no access to look at any of my blood results but how likely do you guys think that my symptoms are down to this TSH? And if so how likely am I to get started on any form of treatment? Tia xx

33 Replies
SlowDragon profile image
SlowDragonAdministrator

Highly likely

You are legally entitled to printed copies of your blood test results and ranges

Important to see exactly what has been tested and equally important what hasn't been tested yet

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies

Ask GP to test vitamin levels and thyroid antibodies if not been done

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 .

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins

thyroiduk.org.uk/tuk/testin...

Cheapest option for just TSH, FT4 and FT3 £29 (via NHS private service )

monitormyhealth.org.uk/thyr...

But if not had vitamins and antibodies tested then you need thyroid including antibodies and vitamins

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

Come back with new post once you get copies of results

Rosie2m profile image
Rosie2m in reply to SlowDragon

Thankyou Slowdragon, after looking at my online gp service I’ve now requested access to ALL of the records available but I also managed to snag a last min cancellation appt today at 4.40! Apparently they did test antibodies but they were all fine 🙄 I fear the appt won’t lead to anything as it’s the same dr I saw last time who is very blasé about everything I’ve ever spoken to her about. I’m wondering whether to print out the symptoms list and highlight everything I have? Not sure she will listen tho. I will definitely request a print out tho if this weeks test result and the last one. Xx

SlowDragon profile image
SlowDragonAdministrator in reply to Rosie2m

NHS refuses to test TG antibodies if TPO antibodies are negative. Many Hashimoto's patients only have raised TG antibodies

So you need to test privately

20% of Hashimoto's patients never have raised antibodies

Perhaps push for ultrasound scan of thyroid

healthunlocked.com/thyroidu...

Politely but firmly ask that vitamin D, folate, ferritin and B12 are tested as these are often low if hypothyroid

Also cholesterol test ...high cholesterol levels are linked to being hypothyroid

Yes take in hypo tick list

Rosie2m profile image
Rosie2m in reply to SlowDragon

Ok fab, will do :) I will also look into doing my own test although what are the chances of the dr actually listenening to the results of it? X

SlowDragon profile image
SlowDragonAdministrator in reply to Rosie2m

Thousands on here forced to get full Thyroid and vitamin testing privately in order to make progress

See what you can get GP to test first

BadHare profile image
BadHare

Perhaps ask to have prolactin levels tested.

Rosie2m profile image
Rosie2m in reply to BadHare

Oh I’ve never heard of that before, is this something they don’t test for ordinarily? I can’t see my dr giving me any tests that she doesn’t deem absolutely necessary 😔

SlowDragon profile image
SlowDragonAdministrator in reply to Rosie2m

High prolactin can be linked to autoimmune thyroid disease (Hashimoto's)

medscape.com/answers/120937...

Rosie2m profile image
Rosie2m in reply to SlowDragon

Slowdragon I’ve managed to get my results up on line, my tsh has increased to 9.7 but I don’t understand anything else. How do I put photos in here or can I send them to you please? X

SeasideSusie profile image
SeasideSusieAdministrator in reply to Rosie2m

You can add one picture to your opening post in this thread, that's all that this type of forum allows. You can edit that post by clicking on the downward arrow V next to the word MORE beneath your post then click on EDIT then SUBMIT A PHOTO, upload your picture then click to repost your message.

Other than that, type the results in as: test name > result > (reference range):

TSH: XX (YY - ZZ)

FT4: XX (YY - ZZ)

etc

Rosie2m profile image
Rosie2m in reply to SeasideSusie

Ah fab, thankyou! Xx

Rosie2m profile image
Rosie2m in reply to SeasideSusie

I’ve uploaded my most recent results, this is all I have available to see but I don’t really know much except the tsh level which was 7.11 end of August and is now 9.7 if anyone of you lovely people can see anything else that doesn’t look right please let me know. Thankyou x

SeasideSusie profile image
SeasideSusieAdministrator in reply to Rosie2m

Rosie2m

Your full blood count results are all in range and appear to be fine.

CRP is nice and low - it's a non-specific inflammation marker and would be high if there was any inflammation or infection.

Vit D at 74nmol/L (29.6ng.ml) could be better. The Vit D Council recommends a level of 125nmol/L (50ng/ml) and the Vit D Society recommends a level of 100-150nmol/L (40-60ng/ml). If you'd like to improve that level then to reach the recommended level from your current level, based on the Vit D Council's suggestions you could supplement with 3,700iu D3 daily (nearest is 4,000iu)

vitamindcouncil.org/i-teste...

Retest after 3 months.

A good D3 supplement is an oil based softgel, eg Doctor's Best, just two ingredients (D3 and extra virginolive oil to aid absorption), best price seems to be from Dolphin Fitness.

When you've reached the recommended level then you'll need a maintenance dose to keep it there, which may be 2000iu daily, maybe more or less, maybe less in summer than winter, it's trial and error so it's recommended to retest once or twice a year to keep within the recommended range. You can do this with a private fingerprick blood spot test with an NHS lab which offers this test to the general public:

vitamindtest.org.uk/

Doctors don't know, because they're not taught much about nutrients, but there are important cofactors needed when taking D3 as recommended by the Vit D Council

vitamindcouncil.org/about-v...

D3 aids absorption of calcium from food and K2-MK7 directs the calcium to bones and teeth where it is needed and away from arteries and soft tissues where it can be deposited and cause problems such as hardening of the arteries, kidney stones, etc.

D3 and K2 are fat soluble so should be taken with the fattiest meal of the day, D3 four hours away from thyroid meds if taking tablets/capsules/softgels, no necessity if using an oral spray.

Magnesium helps D3 to work. We need Magnesium so that the body utilises D3, it's required to convert Vit D into it's active form. So it's important we ensure we take magnesium when supplementing with D3.

Magnesium comes in different forms, check to see which would suit you best and as it's calming it's best taken in the evening, four hours away from thyroid meds if taking tablets/capsules, no necessity if using topical forms of magnesium.

naturalnews.com/046401_magn...

drjockers.com/best-magnesiu...

afibbers.org/magnesium.html

Check out the other cofactors too (some of which can be obtained from food).

Ferritin at 43 (12-250) is on the low side. It's recommended that ferritin be half way through range. 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

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

It would be helpful to have B12 and Folate tested (these work together).

Obviously your TSH is a concern. It is rising and is just under the threshold where Primary Hypothyroidism would be diagnosed (it needs to reach 10).

Did you do your test early in the morning, no later than 9am, after an overnight fast and drinking water only before the test? This will give the highest possible TSH which is needed for diagnosis. If FT4 can also be tested, if this is low or below range with a high TSH then this should sway the doctor to diagnose and prescribe Levo.

In some countries hypothyroidism is diagnosed when TSH reaches 3 so you can see that you are actually hypothyroid but haven't yet met the strict criteria that UK guidelines require.

Rosie2m profile image
Rosie2m in reply to SeasideSusie

Thankyou for such a detailed reply. I did the test around 10.30/11am and I had had coffee a couple of hours prior although no food. I was unaware until researching on here today that this was a thing. Now I know for future :) although it begs the question as to what my level would have been earlier in the day. I will address everything that you have highlighted as best as I can. Thankyou xx

SeasideSusie profile image
SeasideSusieAdministrator in reply to Rosie2m

although it begs the question as to what my level would have been earlier in the day

Your TSH would probably have been higher, maybe even over the magic number 10. Here is a post which shows the daily rhythm of thyroid hormones, the top one is TSH and you can see it is highest between midnight and 3am, the next highest is 9am. Then it lowers throughout the day and starts to climb again about 9pm.

healthunlocked.com/thyroidu...

As we can't get a blood test in the early hours of the morning, then no later than 9am is the best time to do it.

BadHare profile image
BadHare in reply to Rosie2m

It’s a pituitary hormone. Excess can cause menstrual issues & infertility.

SlowDragon profile image
SlowDragonAdministrator

So TSH is significantly above top of range indicating you should be started on Levothyroxine

There's no FT3 or FT4 results

No thyroid antibodies tests either

Ask GP to test thyroid antibodies and to do FULL Thyroid testing...that's TSH, FT4 and FT3. Make sure to do blood test early morning before eating or drinking anything other than water.

Vitamin D is ok, just. But likely dropping

GP will only prescribe to bring vitamin D up to 50nmol. Aiming to improve by self supplementing to at least 80nmol and around 100nmol may be better .

Once you Improve level, you may need on going maintenance dose to keep it there.

etesting twice yearly via vitamindtest.org.uk

Vitamin D mouth spray by Better You is good as avoids poor gut function.

It's trial and error what dose each person needs.

Government recommends everyone supplement vitamin D from October to April

gov.uk/government/news/phe-...

Ferritin is quite low

Eating liver or liver pate once a week, plus other iron rich foods like black pudding, prawns, spinach, pumpkin seeds and dark chocolate, plus daily vitamin C can help improve iron absorption

No B12 or folate tested

Ask GP to test these

Rosie2m profile image
Rosie2m in reply to SlowDragon

Thankyou slowdragon, I’ve managed to get an appt today so will be taking all of this with me to address these points. And hopefully come away with something in place to help me. It’s very frustrating as I was told antibodies had been done and I just assumed it was just some of those that were on there x

SlowDragon profile image
SlowDragonAdministrator in reply to Rosie2m

Medics frequently think testing antibodies is irrelevant...they don't have anything to treat the high antibodies...only Levothyroxine for subsequent low Thyroid levels

But patients need to know if cause of hypothyroidism is due to autoimmune thyroid disease (Hashimoto's) as there's much we can do to help ourselves

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

Low vitamin levels affect Thyroid hormone

Don't expect GP to be aware of gut or vitamin connection

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.

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct 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 slowly lower TPO antibodies

While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first

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...

restartmed.com/hashimotos-g...

Non Coeliac Gluten sensitivity (NCGS) and autoimmune disease

ncbi.nlm.nih.gov/pubmed/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

ncbi.nlm.nih.gov/pubmed/300...

The obtained results suggest that the gluten-free diet may bring clinical benefits to women with autoimmune thyroid disease

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

Rosie2m profile image
Rosie2m in reply to SlowDragon

It’s bizarre that you mention this as I had a test for celiacs years ago even had the camera down the throat and told I was fine, was then put on a low fodmap diet which presented me with rashes when I ate gluten/wheat... the doctors weren’t interested and gave me antihistamines. I was then diagnosed with ibs but in all honesty I don’t know that I actually have that.. I’m more convinced it’s to do with the gluten/wheat. I’ve tried to cut it out but I just love bread and had no hard evidence that it was definitely a problem. Maybe I should teething this? X

SlowDragon profile image
SlowDragonAdministrator in reply to Rosie2m

So this strongly suggests you have autoimmune thyroid disease (Hashimoto's)

Vast majority of Hashimoto's patients are gluten intolerant not coeliac

So there's no easy available test....you just have to cut it out completely...as if coeliac

No cheating. Read ALL labels. Gluten hidden in all sorts of places

There's good gluten free bread options these days .....B-Free is excellent brand

IBS frequently improves significantly

Sounds like you have been hypothyroid a long time then.....ever since gut flared up,

Rosie2m profile image
Rosie2m in reply to SlowDragon

Oh this makes me sad :( Thankyou for so much info! I feel a bit better than I can go to the drs better equipped tonight x

SlowDragon profile image
SlowDragonAdministrator in reply to Rosie2m

Most GP's are completely unaware of gluten connection to autoimmune thyroid disease

Or that low vitamins are frequently the result of being hypothyroid

Rosie2m profile image
Rosie2m in reply to SlowDragon

Ok, update. Dr has confirmed that the antibodies results are not actually back- apparently she didn’t request them, the blood place automatically add them on if TSH hoes over a certain level 🤷‍♀️ she doesn’t seem to think in need to take any additional vitamins as obviously I’m technically ‘in range’ for everything BUT she has put me to have another blood test and she did say whilst she won’t treat me atm because my tsh level isn’t at the level guidelines say and the health risks to take before the level are too dangerous.... but if antibodies or the new blood test come back with anything abnormal she will start me on a low dose! As of the moment I’m suffering from subclinical hypothyroidism x

humanbean profile image
humanbean in reply to Rosie2m

she won’t treat me atm because my tsh level isn’t at the level guidelines say and the health risks to take before the level are too dangerous

What a load of tripe your doctor talks! The TSH level demanded in the UK before treatment is considered for hypothyroidism is TSH > 10.

In the meantime, healthy people are daring to walk around the UK's streets with a TSH of (on average) about 1.2.

Rosie2m profile image
Rosie2m in reply to humanbean

Yes I think they just want to treat as few people as possible, if I felt well I wouldn’t care but I feel awful!! Xx

SlowDragon profile image
SlowDragonAdministrator in reply to Rosie2m

You need a different GP

A TSH of 9.7 is easily high enough to start on Levothyroxine .....But ESPECIALLY with high antibodies

Guidelines say that Levothyroxine should be treat If TSH is 10 or high if not antibodies present

If thyroid antibodies are present and patients have symptoms then treatment with Levothyroxine should be started once TsH is over range (top of range on your test is 5)

thyroiduk.org.uk/tuk/testin...

Print out pages 5 & 6 and and highlight relevant guidelines

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

SlowDragon profile image
SlowDragonAdministrator in reply to Rosie2m

Obviously your GP hasn't even tested FT4 or FT3 so this must be done along with TSH

Rosie2m profile image
Rosie2m in reply to SlowDragon

Looking at the form for the blood test she is testing for ‘free T4, thyroid function TSH’ I shall definitely be doing this test as early as possible without having consumed coffee. No mention of testing FT3 tho 🤔 xx

SlowDragon profile image
SlowDragonAdministrator in reply to Rosie2m

Virtually unheard of these days to get FT3 tested on NHS

But if TSH is out of range (is over 5) FT3 should be tested....and absolutely definitely if TSH is over 10 (9.7 is so close to 10....splitting hairs )

Rosie2m profile image
Rosie2m in reply to SlowDragon

It’s so frustrating, what level does 9. Go up to before it turns to 10? I think I’m going to have to pay for one of those tests just to get some answers for my own peace of mind x

SlowDragon profile image
SlowDragonAdministrator in reply to Rosie2m

See what happens when you get antibodies test back

If TPO antibodies are negative then NHS refuses to test TG antibodies...so private testing would be required

Rosie2m profile image
Rosie2m in reply to SlowDragon

Ok, I will upload them when they appear ;) Thankyou xx

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