I’ve been on 25mg of levothyroxine since 1st march. My TSH level was 5.38 and for fertility reasons I needed it to be 2.5. Levothyroxine has done the trick and I’m now 2.45.
I have recently developed a raised rash all over my body that is so itchy. Does anyone have any experience of this or solutions?
I need my thyroid to be at this level throughout ivf but can’t handle this rash/itchiness throughout
welcome to the forum
Just testing TSH is completely inadequate
It’s highly unlikely 25mcg levothyroxine is final dose you will need
Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine
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)
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
hives suggests your hypothyroidism is likely autoimmune
Kalover which brand of levo are you taking? Teva brand is often not well tolerated. The fillers in tablets such as acacia powder can cause problems. Check the PIL, patient info leaflet that should be with your tablets.
it says it’s wockhardt. I have read elsewhere that vitamin supplements along with meds can effect things? So stop taking vitamin c supps? Have you heard this
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A TSH of 2.45 is only just with the 2.5 limit - and that limit is very arbitrary. Most of us feel better with TSH closer to 1, or even slightly below. And given thyroid levels are affected by pregnancy you could so very easily be just over 2.5. Even a different time of day or lab could make that small difference.
Therefore, I wonder if your dose really is adequate. However, I am NOT qualified. SO take this as a suggestion to ask further, to read further, and to satisfy yourself all is good.
Wockhardt is very often regarded as well-tolerated. But my UK medicines document lists every UK thyroid hormone medicine and its excipients for you to consider.
helvella's medicines documents (UK and Rest of the World) can be found here:
helvella - Thyroid Hormone Medicines
helvella has created, and tries to maintain, documents containing details of all thyroid hormone medicines in the UK and, in less detail, many others around the world. There is now a specific world desiccated thyroid document.
I highly recommend viewing on a computer screen, or a decent sized tablet, rather than a phone. Even I find it less than satisfactory trying to view them on my phone.
helvella - Thyroid Hormone Medicines - UK
The UK document contains up-to-date versions of the Summary Matrixes for levothyroxine tablets, oral solutions and also liothyronine available in the UK. Includes descriptions of tablet markings which allow identification. Latest updates include all declared ingredients for all UK products and links to Patient Information Leaflets, etc.
dropbox.com/s/bo2jzxucgp9hl...
helvella - World Desiccated Thyroid
Contains details of all known desiccated thyroid products.
dropbox.com/scl/fi/gx6dmz5i...
helvella - Thyroid Hormone Medicines - RotW
Contains details of all levothyroxine, liothyronine and combination products - excluding desiccated thyroid products. Details available vary by country and manufacturer.
The link below takes you to a blog page which has direct links to the documents from Dropbox and QR codes to make it easy to access from phones. You will have to scroll down or up to find the link to the document you want.
Sorry, I don't have a solution but it might be good to know that you're not the only one with this problem. I only have a few at a time, currently five dotted around my body, and they normally disappear after a week and then appear again randomly but enough to drive me mad because they are so itchy. I use Anthisan.
my understanding is that your tsh should not be over 2.5 but can go below that for you to feel well. At 2. 45your thyroid is still struggling. Jo xx
Hi Kalover,
One way to find out whether the excipients or the levothyroxine itself is causing the issue is to try custom compounded pills from a compounding pharmacy. Not sure if it's any different in the UK, but in the US around where I am, they're typically made with just a gelatin capsule, and levothyroxine sodium cut with microcrystalline cellulose. (I think you can also substitute the cellulose with sugar or another inert ingredient, if you're not positive you have no reaction to MC.) If you continue to get hives on the compounded pills, you likely have an allergy to levothyroxine, which is rare but has been documented in literature (thanks to helvella for sending me those links years ago!).
I had a long-standing allergy to liothyronine (no reaction to levothyroxine, curiously) and was able to resolve it by taking high dose antihistamines daily for about four months. The way my allergist explained it was something to the effect of if you tamp down the response long enough, the mast cells kind of "forget" their reaction to the allergen over time. It's been five years and I can't remember exactly how he explained it, but it was something along those lines. The key is to not let your body have even the slightest response for an extended period of time, as any breakthrough allergic response would render the process moot.
For me that was an easy and relatively benign resolution to a major problem, and worked like a charm after a year of suffering through body-wide hives on liothyronine. (I actually first discovered the allergy many years prior to that, but having no resolution, had given up on taking T3 at that time.) I took double dose Loratidine or Cetirizine daily, though my allergist said I might need to triple the dose if double wasn't enough to fully suppress the hives, and said it was perfectly safe to take higher doses (he stated some people need to take high dose antihistamines lifelong). Another renowned allergist he referred me to (news.virginia.edu/content/m... suggested H-2 blocking antihistamines like Ranitidine would work even better for this purpose, however, since I have a history of digestive, possibly low-acid issues, I didn't want to go that route. I've been taking T3 continuously since then for five years now without any recurrence of hives. If I ever stopped, it's possible that I could be re-sensitized to liothyronine and have to go through the process again.
Hope that helps; would love to hear how you get on over time.
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