tsh results and rash: I’ve been on 50 microgram... - Thyroid UK

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tsh results and rash

Ozzy77 profile image
30 Replies

I’ve been on 50 microgram tablets since March 2024 previously was on 25 microgram for a year. Just had tsh done and it’s level 4.4. Ferritin 168. Both marked as normal. I’ve been suffering with an itchy rash on neck and scalp since June. Had prescription steroid creams, lotions, anti histamine tablets. Nothing works. Could this be connected to thyroid. Pic took beginning of July. Still no better. In fact looks worse. GP first said eczema, a few weeks later went back and said psoriasis, went back and said eruption. It’s waking me up at night and I am really fed up with this. The other thing is I have noticed is when I exert myself exercising (sweat) I come out in hives on my stomach, back, arms. Nothing in lower body. These do disappear once cooled down. This started the same time as the neck and scalp itchy rash. Any advice welcome. Thanks.

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helvella profile image
helvellaAdministrator

A TSH of 4.4 is NOT "normal" - for anyone. And especially not when on thyroid hormone treatment.

Most of us would expect to be below 2, possibly around 1, or lower, even below the lower end of the reference interval (range).

It is also wrong to base dosing on TSH. You really should have Free T4, and hopefully Free T3, also done.

Have you ever had an antibody test? Thyroid Peroxidase antibodies (TPOab) and Thyroglobulin antibodies (TGab).

What make of levothyroxine do you take? Has this changed since you started? Or when you changed dose?

There have been many posts here about hives - and few really good, clear answers. But you might find reading through some of these previous posts gives you some ideas:

healthunlocked.com/thyroidu...

This is a link to a very good article in the British Medical Journal discussing what the 'normal range' really is. Very readable.

The normal range: it is not normal and it is not a range

helvella.blogspot.com/p/the...

tattybogle profile image
tattybogle

Hi Ozzy , if your TSH is as high as 4.4 after a couple of months on 50mcg , it indicates dose should be increased, see these multiple recommendations for GP's to keep TSH below 2/ 2.5 in all patients on levo :

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

(increasing Levo dose will raise the fT4 level , and as a result , lower the TSH)

explanation of why TSH 'in range' is not the same as 'optimal for the individual patient' : 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

SlowDragon profile image
SlowDragonAdministrator

very likely low vitamin D, folate and/or B12 as you have been left ridiculous length of time on only standard STARTER dose levothyroxine

request 25mcg dose increase in levothyroxine to 75mcg

Which brand levothyroxine are you currently taking

bloods should be retested 6-8 weeks after each dose change or brand change in Levo

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).

For full Thyroid evaluation you need TSH, FT4 and FT3 tested

Also both TPO and TG thyroid antibodies tested at least once to see if your hypothyroidism is autoimmune

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

Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease

About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high TPO and/or high TG 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.

Significant minority of Hashimoto’s patients only have high TG antibodies (thyroglobulin)

20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis

In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)

Essential to test vitamin D, folate, ferritin and B12

Lower vitamin levels more common as we get older

For good conversion of Ft4 (levothyroxine) to Ft3 (active hormone) we must maintain GOOD vitamin levels

What vitamin supplements are you taking

Also VERY important to test TSH, Ft4 and Ft3 together

What is reason for your hypothyroidism

Have you been tested for Autoimmune?

Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test 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

Post all about what time of day to test

healthunlocked.com/thyroidu...

Testing options and includes money off codes for private testing

thyroiduk.org/testing/

Medichecks Thyroid plus BOTH TPO and TG antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes BOTH TPO and TG antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Only do private testing early Monday or Tuesday morning.

Link about thyroid blood tests

thyroiduk.org/testing/thyro...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Symptoms of hypothyroidism

thyroiduk.org/signs-and-sym...

Tips on how to do DIY finger prick test

support.medichecks.com/hc/e...

Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee

Ozzy77 profile image
Ozzy77 in reply toSlowDragon

Just going to look up my last vitamin test. This is my full blood count test marked as normal, although I’m a bit concerned about the eosinophil level. I’m waiting for tpo, t3 test results.

Ok
Ozzy77 profile image
Ozzy77 in reply toSlowDragon

Vitamin D in September 2023 was 83 normal. T4 was 17.5. Folate was 5.6. B12 was 525.

SlowDragon profile image
SlowDragonAdministrator in reply toOzzy77

Vitamin D needs retesting. September is too long ago

How much vitamin D are you taking

please add ranges on Folate and B12

Folate looks low

Low folate

Suggest start 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

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 5-7 days before ALL BLOOD TESTS , as biotin can falsely affect test results

endo.confex.com/endo/2016en...

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)

Post discussing how biotin can affect test results

healthunlocked.com/thyroidu...

helvella.blogspot.com/p/hel...

Ozzy77 profile image
Ozzy77 in reply toSlowDragon

Folate was 5.6 (2 - 18.7)

Serum B12 level 525 (197 - 771)

Vitamin D 83 (<25)

Ferritin 168 (20 - 260)

I don’t take any vitamins.

Ozzy77 profile image
Ozzy77 in reply toSlowDragon

Would this be ok to take.

Ok
Jaydee1507 profile image
Jaydee1507Administrator in reply toOzzy77

That only has 250mcgs folate.

B complex suggestions: Slightly cheaper options with inactive B6:

amazon.co.uk/Liposomal-Soft...

Contains B6 as P5P an active form:

bigvits.co.uk/thorne-resear...

healf.com/products/basic-b-...

Explanation about the different forms of B6:

helvella.blogspot.com/p/hel...

B complex comparison spreadsheet:

healthunlocked.com/thyroidu...

Ozzy77 profile image
Ozzy77 in reply toJaydee1507

Thank you. I’ll take a look.

SlowDragon profile image
SlowDragonAdministrator in reply toOzzy77

what’s the range on Ft4 ?

Was this most recent test

Was test early morning and last dose Levo 24 hours before test

Ozzy77 profile image
Ozzy77 in reply toSlowDragon

T4 17.5 (11 - 23)

This was last September. Still waiting for latest TPO, T3, T4.

SlowDragon profile image
SlowDragonAdministrator in reply toOzzy77

Free T4 (fT4) 17.5 pmol/L (11 - 23) 

Ft4 only 54.2% through range

You need 25mcg daily dose increase in Levo up to 75mcg daily

Retest in 8 weeks

Ozzy77 profile image
Ozzy77 in reply toSlowDragon

Sorry just relooked I had tsh level in May this year it was 3.5. Was checked 8 weeks after going on 50mcg. So it had come down but now gone back up. Both early morning tests. No tablet before.

Jaydee1507 profile image
Jaydee1507Administrator in reply toOzzy77

Insist on next 25mcgs dose increase. If one doctor refuses then keep going back and asking different doctors.

Ozzy77 profile image
Ozzy77 in reply toSlowDragon

I’m beginning to wonder if I’m taking too much Levothyroxine. I’m always get hot sweaty really quick during the day and night. Never suffered with hives or itchy neck scalp rash when I was on 25 mcg. Reason I got put on was tiredness, hair loss, restless nights, and tsh levels always borderline, top end of normal or slightly above. Plus my mother has under active thyroid

Jaydee1507 profile image
Jaydee1507Administrator in reply toOzzy77

Believe me low thyroid levels can make you hot and sweaty, not able to tolerate heat etc

If your TSH is well above 1 then you're a lot under replaced.

SlowDragon profile image
SlowDragonAdministrator in reply toOzzy77

Plus my mother has under active thyroid

So cause of your hypothyroidism virtually guaranteed to be autoimmune also called Hashimoto’s

Autoimmune thyroid disease runs in families. It has strong genetic links

once we start on levothyroxine it’s essential to be on high enough dose to bring TSH down….ALWAYS below 2

Most Hashimoto’s patients will have TSH below 1 when on adequate dose levothyroxine

Levothyroxine doesn’t “top up” your own thyroid, it replaces it

Most people will need Ft4 (levothyroxine) at least 70% through range and ideally Ft3 not far behind

Assuming your antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).

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 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...

Jaydee1507 profile image
Jaydee1507Administrator

Have you tried an elimination diet to see if any foods are triggering your rashes?

webmd.com/allergies/allergi...

Certainly it would be worth trialling eliminating gluten from your diet because that can be an issue for some people with Hashi's.

crimple profile image
crimple

Ozzy77 what brand of levothyroxine are you taking? Do you always get the same brand?

Ozzy77 profile image
Ozzy77 in reply tocrimple

No it’s normally 2 different brands. Teva is the one I’m prescribed this month. I can’t remember what the other brand is.

SlowDragon profile image
SlowDragonAdministrator in reply toOzzy77

Teva brand upsets many people

Many people find Levothyroxine brands are not interchangeable.

Most easily available (and often most easily tolerated) are Mercury Pharma or Accord

Mercury Pharma make 25mcg, 50mcg and 100mcg tablets 

Mercury Pharma also boxed as Eltroxin. Both often listed by company name on pharmacy database - Advanz

Accord only make 50mcg and 100mcg tablets. Accord is also boxed as Almus via Boots, 

Wockhardt is very well tolerated, but only available in 25mcg tablets. Some people remain on Wockhardt, taking their daily dose as a number of tablets 

July 2024

Crescent levothyroxine. Dosages: 12.5, 25, 50, 75, 100

(Not yet known if all approved dosages are or will be available).

Excipients: lactose monohydrate, maize starch, croscarmellose sodium, gelatin and magnesium stearate.

Lactose free brands - currently Teva or Vencamil only

Teva makes 25mcg, 50mcg, 75mcg and 100mcg

Many patients do NOT get on well with Teva brand of Levothyroxine.

Teva is lactose free.But Teva contains mannitol as a filler instead of lactose, which seems to be possible cause of problems. Mannitol seems to upset many people, it changes gut biome 

Teva is the only brand that makes 75mcg tablet.

So if avoiding Teva for 75mcg dose ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half

But for some people (usually if lactose intolerant, Teva is by far the best option)

Vencamil (currently 100mcg only) is lactose free and mannitol free. 25mcg and 50mcg tablets hopefully available from summer 2024

March 2023 - Aristo now called Vencamil

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

How to get Vencamil stocked at your local pharmacy

healthunlocked.com/thyroidu...

Helpful post about different brands

healthunlocked.com/thyroidu...

List of different brands available in U.K.

thyroiduk.org/if-you-are-hy...

Posts that mention Teva

healthunlocked.com/search/p...

Teva poll

healthunlocked.com/thyroidu...

Once you find a brand that suits you, best to make sure to only get that one at each prescription.

Watch out for brand change when dose is increased or at repeat prescription.

Government guidelines for GP in support of patients if you find it difficult/impossible to change brands

gov.uk/drug-safety-update/l...

If a patient reports persistent symptoms when switching between different levothyroxine tablet formulations, consider consistently prescribing a specific product known to be well tolerated by the patient.

academic.oup.com/jcem/artic...

Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).

And here

pharmacymagazine.co.uk/clin...

Discussed here too

healthunlocked.com/thyroidu...

crimple profile image
crimple

Ozzy77, you need to know that each brand has different fillers/excipients. The chemist may well tell you they are all the same!! The only thing that is the same is the levothyroxine in the tablet. I cannot tolerate TEVA due to acacia powder in the fillers. Had terrible digestive problems. Hives are likely a sign your body doesn't like you meds fillers!

Some tablets contain lactose (no good if you are lactose intolerant)some contain mannitol which upset some folks.

It is always advised on here that you stick to one brand. Perhaps ask for Vencamil (Aristo)or Accord . As far as I am aware TEVA is the only company that makes 75mcgm tablets. If your dose is increased ask for 2 packets of 50mcgm and cut a 50 in half to get 75mcgm dose. Pill cutters easily available at chemist or on line. @helvella has a paper with info on different brands of thyroid meds. Hope your hives soon go away. You will learn from here that we often have to fight for what we want!!

Ozzy77 profile image
Ozzy77 in reply tocrimple

I didn’t realise that. I think it will be a hard fight to get them to prescribe me 2 x 50 per month if they up it to 75. I wonder if I could ask for it every 6 weeks on repeat if that the case. The hives come with with excessive searing on exercise. The itchy neck rash and scalp flares up for no apparent reason. All this has only been happening since mid June. I went on 50mcg in March upped from 25mcg.

Ozzy77 profile image
Ozzy77 in reply toOzzy77

I mean sweating on exercise.

crimple profile image
crimple

Ozzy77 the cost of 2 packets of 50 mcgm tablets will be less than £1 so they can't argue about cost if you need to trial a different med to see if it helps. It will be cheaper than all the lotions and potions you have had so far!

Have you had your antibodies tested? TPO and TgAb. I would strongly suggest you get a Medichecks blood test. They offer a discount on thursdays for those who use this site and you can get TSH, T4 and T3 +antibodies + Vit B12, D, ferritin and folate tested with a finger prick blood test. SlowDragon has given good advice re vits and testing.

I stumbled along for 5 years after diagnosis before finding this site in 2012. Over the next 3 years I recovered my health. I would still be on the sofa if I hadn't found this site. It is shocking but true that we have to educate ourselves with help from here and then advocate for our selves in order to get well again. Thyroidies are at the bottom of the pile in my opinion when it comes to being optimally treated. It is hard sometimes to get through the brain fog. Just keep asking on here and learning.

SlowDragon profile image
SlowDragonAdministrator

Teva 75mcg tablets are currently more expensive than 25mcg and 50mcg tablets

So it’s not more expensive to prescribe separate tablets

Ozzy77 profile image
Ozzy77 in reply toSlowDragon

Than you for all help. I’ll post results as soon as I get them. Going to make an appointment with GP once results come back. Will also start on the vitamins.

Ozzy77 profile image
Ozzy77 in reply toSlowDragon

I’ve now had my TPG result and it was 47 (<34) range . They also did my T3 which was 4.27 (3.1 - 6.8) range. T4 was 22.5 (11-23) range. My T4 has never been this high. They also re did my TSH which was only done 2 days earlier. This time it was 2.9, yet only 2 days earlier it was 4.4.

GP said not to increase the dose as this could make my rash and heat flushing worse. When I asked about distance in range of TSH, he said sometimes it does this. I’ve asked the pharmacy for Accord instead of Teva as GP cannot state not TEVA on prescription unless it a private prescription. I’ve had more bloods done mainly for different antibodies I think. Also for Coeliac. No results back yet from them.

SlowDragon profile image
SlowDragonAdministrator in reply toOzzy77

high TPO antibodies confirms autoimmune thyroid disease

Was checked 8 weeks after going on 50mcg. So it had come down but now gone back up. Both early morning tests. No tablet before.

Likely to see Ft4 drop

Free T3 (fT3) 4.27 pmol/L (3.1 - 6.8)

Ft3 is low at only 31.6% through range

Low Ft3 will result in low vitamin levels, poor nutrient absorption and poor gut function

Essential to regularly retest vitamin D, folate, B12 and ferritin

next steps

1) start taking daily Vitamin B complex

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

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 5-7 days before ALL BLOOD TESTS , as biotin can falsely affect test results

endo.confex.com/endo/2016en...

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)

Post discussing how biotin can affect test results

healthunlocked.com/thyroidu...

helvella.blogspot.com/p/hel...

2) Get vitamin D retested now

3) stick on Accord brand only - ideally start increasing dose Levo to 75mcg 2 days a week……or to 62.5mcg 4 days a week

4) assuming coeliac test negative start on strictly gluten free diet

5) Retest thyroid levels again in another 6-8 weeks - test before 9am and last dose levothyroxine 24 hours before test

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