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.
tsh results and rash: I’ve been on 50 microgram... - Thyroid UK
tsh results and rash
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...
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
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
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
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.
Vitamin D in September 2023 was 83 normal. T4 was 17.5. Folate was 5.6. B12 was 525.
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...
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.
Would this be ok to take.
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...
Thank you. I’ll take a look.
what’s the range on Ft4 ?
Was this most recent test
Was test early morning and last dose Levo 24 hours before test
T4 17.5 (11 - 23)
This was last September. Still waiting for latest TPO, T3, T4.
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
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.
Insist on next 25mcgs dose increase. If one doctor refuses then keep going back and asking different doctors.
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
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.
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
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.
Ozzy77 what brand of levothyroxine are you taking? Do you always get the same brand?
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.
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
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!!
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 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.
Teva 75mcg tablets are currently more expensive than 25mcg and 50mcg tablets
So it’s not more expensive to prescribe separate tablets
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.
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