Thyroid UK
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Hi just registered but not for myself

I am very new to this, please bear with me. I am looking for advice regarding my 32 yr old daughter, she was diagnosed with hypothyroidism in 2011. Do I post results for her. She doesn't think she needs any help and that's why I am here. She felt awful on the 175mcg levo and was sick of taking it with ongoing hypothyroid symptoms despite her specialist saying her results were in range and a diagnosis of anxiety was added to her records. She has had results going up and down a lot, no one knows why. Our family history has a lot of autoimmune issues and her dad was hypothyroid as well. She has been very low, concentration is low, I am worried her mental status is very badly affected. Advice appreciated. Thank you

Serum TSH 4.65 (0.2 - 4.2)

Serum Free T4 14.7 (12 - 22)

Serum Free T3 3.3 (3.1 - 6.8)

She takes 25mcg levo

Serum ferritin 22 (15 - 150) She has iron deficiency

Serum folate 4.1 (4.6 - 18.7)

Serum vitamin B12 223 (190 - 900)

Total 25 OH vitamin D 51.1 (50 - 75 suboptimal) she takes 3000iu oral spray by Better You

10 Replies
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Welcome to the forum, Ayeshia.

If you post her thyroid results and ranges members will advise if your daughter is adequately dosed. If you have results for ferritin, vitamin D, B12 and folate post them too.

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Thank you, they have been added to the post

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Why is she only on 25mcg? She is very undermedicated. Her TSH should be below 1 and T4 and T3 in upper part of the ranges, they are right at the bottom.

What is she taking for her iron deficiency? She should be taking 3x210mg of ferrous fumerate.

She also needs a higher dose of vitamin D as the spray does not seem to be giving her enough. , I would personally take the deficiency loading doses which is 300,000iu over 8 weeks. I took 5000iu a day. You might want to combine this with k2 as there is some evidence that this protects against hypercalcemia and directs calcium to the bones.

Her vitamin b12 and folate are low too. Does she have any b12 deficiency symptoms? If so go to the Pernicious Anaemia forum to get advice before supplementing.

Her levels are probably fluctuating because if she has Hashimoto’s so she will get flares and this can cause thyroid levels to look “hyper” when they are not.

No wonder she feels terrible.

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Hi and thank you, she reduced her dose to 25mcg herself. She felt like giving up and her specialists have been advising her to change her dose about a lot according to the TSH and Free T4. She is taking nothing for the iron deficiency at all. She has B12 deficiency symptoms as well. She asked the specialist if she has Hashimotos and he told her no.

Thyroid peroxidase antibodies 508.5 (<34)

Thyroglobulin antibodies 376 (<115)

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She has got hashimotos from those results. She needs to see a new “specialist”!! I don’t think he knows what he is doing at all if he keeps changing her dose and dies think she has hashis! Wow!

Has she been on 25mcg long? If so, she needs to increase her dose gradually by 25mcg every 6 weeks. Ideally she should be retest every six weeks to check whether she needs an increase but probably isn’t necessary for the first couple in her case as she is increasing to a previous dose.

She needs to get on some supplements quickly. Supplements should be taken at least 4 hours away from levo. Levo should be taken on an empty stomach at about the same time everyday. I take it in the water with a glass of water 1 he before eating. If she has been varying the time of day she takes it or she takes it with food or tea or coffee this can also explain fluctuating results.

If she can’t see a useful doctor, it is possible to do it all yourself. You can get private tests (Medichecks or Blue Horizon are the usual ones people seem to use). And if needs be you can buy your medication. If you ask people to PM you they can tell you where.

Personally I am exhausting medical profs until I really reach a brick wall before considering self medicating but I have a good doctor who listens. It sounds like your daughter has someone who is doing her much more harm than good.

If you want to try someone else you can get a list of GPs and Endos (both private and NHS) who members have found helpful. The email address you write to has changed for this so hopefully someone will be along in a sec to provide the updated one. You can also get the Pulse article from which the text in my above post was quoted. This can be useful to show GPs etc if you need your treatment changed. I find it’s better to send it to them with a covering letter rather than turn up to an appt with that sort of info as in my experience they won’t look at it.

Good luck.

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Oh and you should never increase or decrease levo in big amounts like that, it will make you feel very unwell. You should go up and down 25mcg at a time.

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Ayeshia,

Who decided to reduce your daughter's dose from 175mcg to 25mcg and why?

Autoimmune thyroiditis (Hashimoto's) is one cause for fluctuating thyroid levels. Has your daughter had thyroid antibodies measured? The other cause is doctors adjusting dose to target TSH level.

Your daughter is undermedicated to have TSH 4.65 which is over range. She should ask for an increase to 50mcg.

The goal of Levothyroxine is to restore the patient to euthyroid status. For most patients that will be when TSH is 0.2 - 1.0 with FT4 in the upper range. FT4 needs to be in the upper range in order that sufficient T3 is converted. Read Treatment Options in thyroiduk.org.uk/tuk/about_... Email dionne.fulcher@thyroiduk.org if you would like a copy of the Pulse article to show your GP.

B12 223 is low in range. If your daughter has many of the symptoms in b12deficiency.info/signs-an... she should go to healthunlocked.com/pasoc for advice about B12 deficiency.

Folate is deficient. Her GP should prescribe 5mg folic acid once it is established she is not B12 deficient. If B12 injections are to be initiated they should be given 48 hours before folic acid is started.

VitD 51.1 is insufficient. Replete is >75 and optimal is 100-150. I would double dose to 6,000iu for 6 weeks and then reduce to 3,000iu daily and retest vitD in June.

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Hi and thank you, she reduced her dose to 25mcg herself. She felt like giving up and her specialists have been advising her to change her dose about a lot according to the TSH and Free T4. She is taking nothing for the iron deficiency at all. She has B12 deficiency symptoms as well. She asked the specialist if she has Hashimotos and he told her no.

Thyroid peroxidase antibodies 508.5 (<34)

Thyroglobulin antibodies 376 (<115)

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Ayeshia,

Your daughter needs to increase her Levothyroxine dose in 25mcg increments at 6 week intervals until TSH is 0.2 - 1.0. She needs to take iron with vitamin C to treat iron deficiency and get advice from PAS forum re B12 deficiency.

UK doctors are peculiarly unwilling to own to Hashimoto's. They prefer to call it thyroiditis, autoimmune thyroiditis or chronic autoimmune thyroiditis.

Thyroid peroxidase antibodies are positive for autoimmune thyroid disease (Hashimoto's). There is no cure for Hashimoto's which causes 90% of hypothyroidism. Levothyroxine treatment is for the low thyroid levels it causes. Many people have found that 100% gluten-free diet is helpful in reducing Hashi flares, symptoms and eventually antibodies.

chriskresser.com/the-gluten...

thyroiduk.org.uk/tuk/about_...

healthunlocked.com/thyroidu...

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Please get her to take her thyroxine (increase in 50mcg steps) and all her vitamins up to scratch. Injections sprays and high doses if need be.

Take 200mcg selenium with the thyroxine (made huge difference )

But I was almost bedbound with almost identical b12, and vit D results as your daughter. Suffering with all the symptoms.

once my vitamins were up I actually feel alive again - and have energy and health for once!

I also take magnesium and folic acid with my b12 and vit D.

And I take iron vit c and zinc at a separate time.

Honestly if you could see the difference in me now to just a few weeks ago.

Push the doctor to give b12 injections!

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