Hi: Hi I am a newbie, 27 years old. I feel really... - Thyroid UK

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Luna1991 profile image
12 Replies

Hi I am a newbie, 27 years old. I feel really unwell, no idea what my symptoms are. I have been told by my endo they are not thyroid related and I will not be getting a dose increase.

Dry mouth, nose/skin/eyes

Scalloped and beefy red looking tongue

Breath catching in chest

Weight gain

Memory loss

Depression

Ears ringing

Joint pain

Fatigue

Low pulse

Heaviness in legs and arms

Heavy periods

Eyelashes falling out

Increasing lack of concentration

Please could anyone advise. I really don't know for how much longer I can put up with making any more silly mistakes at work due to how foggy I feel. Thank you.

December 2017 (175mcg levothyroxine)

Serum TSH *5.90 (0.2 - 4.2)

Serum Free T4 14.7 (12.0 - 22.0)

Serum Free T3 3.6 (3.1 - 6.8)

Thyroid Peroxidase antibodies *1500 (<34)

Thyroglobulin antibodies *375 (<115)

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Luna1991
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12 Replies
Nanaedake profile image
Nanaedake

Scalloped tongue, ears ringing and memory loss may be caused by low B12.

Heaviness in arms & legs,, eyelashes falling out and heavy periods may be low iron levels.

Fatigue, low pulse, weight gain are likely due to being undermedicated.

Aching joints could be low Vitamin D.

Have you had vitamin levels tested? You do need an increase in Levothyroxine while you get nutritional levels sorted.

Luna1991 profile image
Luna1991 in reply to Nanaedake

Yes

Dec 2017

Total vitamin D 49.2 (25 - 50 supplementation is indicated)

Ferritin 33 (30 - 400)

Folate *3.7 (4.6 - 18.7)

Vitamin B12 220 (190 - 900)

GP looking into why my bones are weak. Taking 800iu D3, 3x ferrous fumarate

Nanaedake profile image
Nanaedake in reply to Luna1991

Has your GP ruled out pernicious anaemia? B12 although in range is low. Pernicious anaemia society advocate levels above 500 or near top of range to ensure sufficiency as you have symptoms of know B12.

Ferritin needs to be 70 or mid range for thyroid hormone to work properly.

Folate is low and will contribute to symptoms but you need to address low B12 and then folate. Post results on the HealthUnlocked Pernicious Anaemia forum for best advice on B's. Are you supplementing for your vitamin D deficiency? You need to aim for levels mid-range or around 100nmol.

Edited: just seen you've added vit D supplements. 800 iu isn't enough to treat a deficient mouse. Were your levels below 30 when diagnosed? If so, and in UK GP should have given loading doses.

Luna1991 profile image
Luna1991 in reply to Nanaedake

Haven't had pernicious anaemia ruled out, I take 800iu vit D.

Thanks

Nanaedake profile image
Nanaedake in reply to Luna1991

See my edit.

Luna1991 profile image
Luna1991 in reply to Nanaedake

Level was below 30 yes

Nanaedake profile image
Nanaedake in reply to Luna1991

800iu of vitamin D won't help a deficient mouse let alone someone with levels below 30. In the UK there are guidelines your GP should follow and as your vitamin D was under 30 your GP should have prescribed loading doses of vitamin D and then an adequate maintenance dose. You need to aim for a level around 100nmol. Ask your GP for the correct treatment according to the NICE guidelines or local CCG guidelines. Local CCG guidelines will be similar.

cks.nice.org.uk/vitamin-d-d...

The vitamin D Council gives some advice about levels to supplement if your GP cannot prescribe sufficient amounts of vitamin D3.

You may wish to take magnesium and K2-MK7 with vitamin D3 in order to absorb the vitamin D effectively. Magnesium citrate is ok but there are other choices for magnesium.

naturalnews.com/046401_magn...

Have you got symptoms of B12 deficiency because if so, I advise you to post your B12 and folate results along with an outline of your thyroid condition and symptoms, low ferritin etc on the HealthUnlocked Pernicious Anaemia forum healthunlocked.com/pasoc and ask their advice about what your GP should be doing. Really, it looks like you need further investigations to rule out pernicious anaemia. Your GP should check for intrinsic factor antibodies.

B12 symptoms of deficiency

b12deficiency.info/signs-an...

B12 The Guidelines Doctors follow

onlinelibrary.wiley.com/doi...

onlinelibrary.wiley.com/doi...

Ferritin needs to be at least 70 or mid-range for thyroid hormone to function properly. Have you had a full iron panel because if not, your GP needs to do one.

Iron deficiency anaemia NICE guidelines

cks.nice.org.uk/anaemia-iro...

The importance of vitamins and thyroid function

americannutritionassociatio...

If your bones are weak then long standing vitamin D deficiency will have contributed. Ensure you bring your levels up quickly and then find an adequate maintenance dose. You may also wish to eat 5 prunes a day to increase boron which may help to prevent against osteoporosis.

Luna1991 profile image
Luna1991

I just don't want to feel like a pest when I go to see the GP. I feel like a problem patient :(

Nanaedake profile image
Nanaedake in reply to Luna1991

You are not a problem patient. Other people go to the GP when they have a cold. You've had some quite severe deficiencies that have been inadequately treated for a while. In addition you are undermedicated with levothyroxine. You just have to keep returning to GP and be persistent and insistent that you are treated adequately.

Tell your GP that you've been reading about hundreds of other people with autoimmune thyroid disease who have become symptom free once they've optimised their vitamin levels, addressed gut dysfunction and increased their levothyroxine until they are on the correct dose and you intend to keep visiting the GP until you sort it all out now you've discovered it's possible to become well and symptom free and you're not giving up until you have your life back.

Clutter profile image
Clutter

Luna,

Change your endo. You are undermedicated to have TSH 5.90 on 175mcg Levothyroxine and you need a dose increase.

The goal of Levothyroxine is to restore the patient to euthyroid status. For most patients that will be when TSH is 0.3 - 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 or endo.

Thyroid peroxidase and thyroglobulin 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_...

B12 is low. If you have other symptoms in b12deficiency.info/signs-an... go to healthunlocked.com/pasoc for advice on how to approach your GP.

Folate is deficient. Your GP should prescribe 5mg folic acid for 2-3 months.

VitD 800iu is insufficient to replenish vitamin D levels. 800iu is a maintenance dose to be taken after vitD is replete ie >75. I would buy your own D3 softgel capsules and supplement 5,000iu daily x 6 weeks and then reduce to 5,000iu alternate days and retest in April. Take vitD 4 hours away from Levothyroxine.

3 x 210mg Ferrous Fumarate is the treatment for iron deficiency and will raise ferritin. Take each tablet with 1,000mg vitamin C to aid absorption and minimise constipation. Take iron 4 hours away from Levothyroxine.

silverfox7 profile image
silverfox7

Have a read on the Thyroid U.K. site who run this forum. You will find a lot of info to back up what you are saying plus a huge list of symptoms that are thyroid related. Please show these to you GP and point out that HealthUnlocked Thyroid section run by Thyroid U.K. is NHS Choices for thyroid disfunction. I'd like to see him argue against the NHS!

judburke profile image
judburke

I think you should ask your Dr or your endo why your ferritin and vitamins levels are so low. It could be that you have a gut problem going on as well as thyroid issues. Some of us with Thyroid issues also have Coeliac disease which means that nutrients cannot be absorbed properly leading to low levels of iron and vitamins. Take a look at Coeliac UK for symptoms and how to get diagnosed. Low iron/ferritin is a classic symptom. Many GP's don't think to test for it unless the person has toilet issues and has lost weight. I had the exact same list as yours and thought it was thyroid not being looked after but it was actually Coeliac that wasn't diagnosed for 3 years.

Most of your symptoms are caused by the nutrient deficiency. Low iron/ferritin causes hair loss, tiredness etc - D3 causes bone issues

Please ask your Dr to investigate why levels are low - it might not be coeliac but you need an answer

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