I'm looking to get some advice/help to deal with the situation.
My 13 years old daughter is on 75 mg of levothyroxin and terribly suffering with body pains for the last couple of days. She had severe headaches last week to start of with , then pain in her thighs and arms now all over her body. She also has sever pain in her throat (feels like a ball is stuck)making it hard to swallow. No temperature and no tonsillitis. Any help would be much appreciated
See GP and arrange new blood tests
She’s perhaps ready for next increase in dose
Roughly how much does she weigh in kilo
Which brand of levothyroxine is she taking
Is it always the same brand
When were vitamin D, folate, ferritin and B12 levels last tested
What vitamin supplements is she taking
Important to maintain GOOD vitamin levels
GP should be testing at least annually
Is her hypothyroidism autoimmune
Has she had thyroid antibodies tested
And coeliac blood test
Bloods should be retested 6-8 weeks after each dose change and retested again in a further 8 weeks to check if levels are stable
Ideally also retested 6-8 weeks after brand change in levothyroxine
For full Thyroid evaluation she always needs TSH, FT4 and FT3 tested
Also both TPO and TG thyroid antibodies tested at least once to see if 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)
NHS only tests TG antibodies if TPO are high
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)
Low vitamin D will cause joint and bone pain
Thank you very much for taking time out to explain everything. Her levothyroxin brand has recently been changed. Prior to that she always had the same brand. Plus all her blood tests have been done by the endocrinologist and everything seemed normal according to him. He did suggest that she will need higher dose now as she is going through puberty (haven't increased the dosage yet) but this sever pain started from Friday night, making her cry with every slightest movement. So worried what is happening.
She is taking vitamin D and iron supplements.
Thank you for the tip for giving bloods early morning, I didn't know that as we have always guy looks when she had had her levothyroxin. On e again thank you very much
Which brand of levothyroxine is she now taking
What brand was she on previously
Did symptoms start when changing brand
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 Vencamil or Teva
Vencamil is lactose free and mannitol free. originally only available as 100mcg only, but 25mcg, 50mcg and 75mcg tablets became available Sept 2024
Prior to March 2023 Vencamil was called Aristo
Vencamil often very well tolerated/best option for many people
How to get Vencamil stocked at your local pharmacy
healthunlocked.com/thyroidu...
Posts discussing Vencamil
healthunlocked.com/thyroidu...
healthunlocked.com/thyroidu....
Teva makes 12.5mcg 25mcg, 50mcg, 75mcg and 100mcg
Many patients do NOT get on well with Teva brand of Levothyroxine.
Teva is lactose free, but 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
Helpful post about Teva
healthunlocked.com/thyroidu...
Posts that mention Teva
healthunlocked.com/search/p...
Teva poll
healthunlocked.com/thyroidu...
Relatively new ……Hillcross brand
This is a box, rather than a brand. 50mcg and 100mcg are Accord brand….but beware 25mcg is Teva brand
Helpful post about different brands
healthunlocked.com/thyroidu...
List of different brands available in U.K.
thyroiduk.org/if-you-are-hy...
Once you find a brand that suits her, 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
all her blood tests have been done by the endocrinologist and everything seemed normal according to him
You are legally entitled to copies of actual results and ranges
She is taking vitamin D and iron supplements.
So how low was vitamin D before starting
Has level been retested and how much is she taking
If it’s a pill or gel this must be at least 4 hours away from levothyroxine and best taken with high fat meal, so that’s usually dinner
Test vitamin D twice year
Extremely easy to do
NHS private testing service
Vitamin D mouth spray by Better You is very effective as it avoids poor gut function.
There’s a version made that also contains vitamin K2 Mk7.
One spray = 1000iu
amazon.co.uk/BetterYou-Dlux...
NHS Guidelines on dose vitamin D required
panmerseyapc.nhs.uk/media/2...
GP will often only prescribe to bring vitamin D levels to 50nmol.
Some areas will prescribe to bring levels to 75nmol or even 80nmol
leedsformulary.nhs.uk/docs/...
GP should advise on self supplementing if over 50nmol, but under 75nmol (but they rarely do)
mm.wirral.nhs.uk/document_u...
It’s trial and error what dose we need, with thyroid issues we frequently need higher dose than average
but this sever pain started from Friday night, making her cry with every slightest movement.
Suggest you get GP appointment
I will take her tomorrow. She was using accord brand For50 mg and then there three different brands have been given for 25mg
Mercury pharmaceutical,Teva and wockhardt ltd. Recently she had been taking Teva.
Teva causes a lot of issues for many people
Get new prescription for 25mcg
I will do thanks alot. Don't know how to help her through the night. Let's see what does the doc say tomorrow.
Hi there and welcome to the forum. My heart goes out to your poor daughter. Puberty is an awful time for youngsters and having thyroid issues on top must be absolutely dreadful at times.You will get great advice and help here, SD is worth her weight gold for knowledge along with so many others.
Do you have a thyroid issue yourself or is this your first time having to learn as much as you can?
I'm sorry I haven't any advice but felt the need to reach out, having gone through a rough time with my son when he was the same age.
We never found out what he was going through as after 14 months it went as quickly as it came. I think puberty can exacerbate symptoms and disrupt whatever is already going on.
This is a difficult time for your daughter and likely difficult for yourself too, seeing her suffer.
You will learn so much from the forum and will be confident to push for tests and results to get your daughter on the right doseage and optimal vits and minerals.
Thank you very much for your kind words ❤️
low iron/ferritin
GP or endo should be doing FULL iron panel including ferritin at least every 4 months if on iron supplements
iron supplements should be at least 4 hours away from levothyroxine and at least 2 hours away from other supplements
Low iron/ferritin common when hypothyroid
Or is she vegetarian or vegan
Essential to test B12 and folate too and maintain good levels
She's possibly low in zinc. A lot of hypos are and that causes muscle pain.
Hi mama! I have an 18 year daughter and have seen her through that last 5 years and my heart is with you. My daughter is not (diagnosed/treated) hypo (yet?!) but we are managing lots of symptoms for years - including chronic headaches. In fact last night she called me with terrible and sudden lower back pain, which is no better this morning!
It is so hard to watch your child suffer. So I send you all the hugs, and strength and wisdom you need, as you do the hero work of a mother.
You have excellent replies above.
I just wanted to weigh in and reiterate that low thyroid hormones indeed can cause muscle aches, frozen back, frozen shoulder, legs that feel like they are so heavy and filled with lead, etc etc.
Thyroid is complex and a delicate balancing act especially through hormonal changes of puberty (and menopause bug the way, which one can describe as puberty in reverse!)
All the symptoms you note are definitely reason for follow up with her GP, and considering all the advice above.
But wanted to reply one mom to another. It’s hard, and your daughter is lucky to have you.
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